I was in the car today on my way to my other campus with an old friend from Heald riding shotgun. I was showing her our campuses of which I am so proud and being in the same industry, I knew she would appreciate a tour.
The phone rang in the car and the conversation comes through the stereo speakers via Bluetooth. I recognized that it was a phone from Gary's hospice nurse, so I took it.
She greeted me and started talking about something that she was sure I knew about.....as she continued talking I realized that she was talking about something that had not been mentioned to me. I had trouble deciphering exactly what she was saying. Either Gary had been improperly touching the caregivers or he had been "touching" himself. They were recommending, after talking to his doctor, that he get an additional medication to help him relax and not fixate on his private parts.
I looked at my friend and we were both about to burst out laughing. Apparently, he is not doing anything unacceptable with the caregivers, but they have "interrupted" him at night and have to leave him alone to finish. I didn't know whether to be embarrassed or cheer him on! Thank heaven Debbie is an old friend who understands caregiving and we had a laugh.
During the same car ride, I shared with her that I had received a call from U.C. Irvine requesting that Gary again visit the neurologist. This seemed odd in that the last time we spoke the doctor shared that he did not need to see Gary again as "there is nothing I can do for him." His diagnosis is why we now have Hospice benefits. I had asked the calling secretary to ask the doctor if there was a mistake. While we were in the car, they called back to confirm that indeed the neurologist h confirmed he did not need to see Gary.
I shared with Debbie that I was glad that I did not need to take him out of Memory Care and drag him down to UCI for an appointment. On the other hand, the neurologist was confirming that there is no hope for him to recover. I knew that but it does not make the fact any easier. My husband is terminal. How sobering. The whole situation was uncomfortable.
I later visited Gary and fed him dinner. I took some new CDs that he and I have listened to multiple times. After dinner he was singing along to "Mack the knife: I Left My Heart in San Francisco" and other Grammy winners. Hearing him be aware of the songs made me feel better. At least for now, he appears okay. I will not say happy and I can't say sad....he just is.
So tomorrow he will be slightly medicated. I'm sure this is not the last adjustment we will have to make .....
When I think back over the day, I am grateful for friends. The reaction of someone sitting in that seat hearing about my husband's behavior in the Memory Care Unit could have been ugly....instead, it was accepted and the reaction came with acceptance. God sends what who we need when we need it....
Friday, July 29, 2016
Wednesday, July 27, 2016
Date Night in the Courtyard
After much inner debate last night, I decided to visit Gary after I finished another appointment.
When I arrived at Sunrise, there was a flood of people streaming out of Gary's Unit (called Reminiscence) headed toward the Assisted Living courtyard. They were headed to a Jazz Saxophone Concert. I ran into the Manager who said they were changing Gary and that he would be right out.
When he emerged from his bathroom in his upgraded wheelchair, he greeted me with a somewhat smile and really had no clue what we were doing. I wheeled him out to the courtyard and got settled.
We were sitting next to the make shift bar and he kept reading the wine containers aloud. I asked him to be quiet when the musician started playing but he continued. After a few moments, he realized the music and throughout the concert tapped his hands (to the beat, not like he normally does) and even sang a little. Several times at the end of a song he would comment "Beautiful. Just Beautiful."
As I sat there with him, I put my arm in his lap. He held my hand, stroked my arm and even kissed my hand a couple of times. At one point he picked up my arm and kissed it. It was very sweet.
At the end of the concert, I took him back to the living room at his Unit and said goodbye. I still don't like leaving without telling him so I have defaulted to telling him that I have to go check on Diva. He doesn't question me but really never says goodbye. I kiss him and tell him I love him and he responds in kind. It is always a bittersweet departure.
It felt like a date night......kinda cool.
When I arrived at Sunrise, there was a flood of people streaming out of Gary's Unit (called Reminiscence) headed toward the Assisted Living courtyard. They were headed to a Jazz Saxophone Concert. I ran into the Manager who said they were changing Gary and that he would be right out.
When he emerged from his bathroom in his upgraded wheelchair, he greeted me with a somewhat smile and really had no clue what we were doing. I wheeled him out to the courtyard and got settled.
We were sitting next to the make shift bar and he kept reading the wine containers aloud. I asked him to be quiet when the musician started playing but he continued. After a few moments, he realized the music and throughout the concert tapped his hands (to the beat, not like he normally does) and even sang a little. Several times at the end of a song he would comment "Beautiful. Just Beautiful."
As I sat there with him, I put my arm in his lap. He held my hand, stroked my arm and even kissed my hand a couple of times. At one point he picked up my arm and kissed it. It was very sweet.
At the end of the concert, I took him back to the living room at his Unit and said goodbye. I still don't like leaving without telling him so I have defaulted to telling him that I have to go check on Diva. He doesn't question me but really never says goodbye. I kiss him and tell him I love him and he responds in kind. It is always a bittersweet departure.
It felt like a date night......kinda cool.
Saturday, July 23, 2016
"They are letting us stay here tonight."
Sitting in the living room at Gary's Memory Care center is a real laughable experience. The residents have conversations with each other, with neither of them knowing what the other is talking about but they go along and it becomes comical.
For example:
One female resident picked up her purse to go to her room for the night. She stopped by our table and said goodnight to another female resident. Lets call them Martha and Irene.
Martha: "Good night my friend. We had a good day."
Irene: "Yes, we did. Did they make you work as hard as I did?"
Martha: "Yes, but lets look at the bright side. We must have done good work because we still have jobs and they are letting us stay here tonight."
Irene: "Yep. What did they make you do?"
Martha: "I had to put together that engine out of the car that broke down."
Irene: "They are tricking us. I put together the same engine. Have a good night. I love you."
Martha: "I love you too and I'm glad you are my friend."
Irene: "I love you, too. Now go to sleep. I'll check on you later."
I am quite positive that neither of them recall this conversation but it is amazing to me that they pick up on each others' memories. In my mind, Martha probably worked in a factory during the war (WW2) and really did put together engines. Irene, on the other hand, was probably raising children and knew nothing of the industrial life but knows of strife and labor. As a witness, it was fascinating and amusing.
Meanwhile, Gary is sitting next to me listening to this whole conversation. For those who have read my blog, he is a repeater. He repeats two to three times various things he hears. If its the answer to a question or an original thought, he says it once.
So his words repeated hearing this conversation was:
"Look at the bright side. We have jobs.Look at the bright side. We have jobs.Look at the bright side. We have jobs."
And then, "I love you too and I'm glad you are my friend."
As he looked at me, he only said this once. He told me he loved me and that I was his friend. Then he followed with, "I love you darlin'". It was an original thought.
Other examples of the importance of listening to the residents....
Today, I was sitting at the dinner table with Gary and three other residents waiting on their food. They had a choice of spaghetti and garlic bread or a hot dog and chips. One of the male residents....we will call him Bill, told the caregiver that he wanted a hot dog. His eyes lit up with glee until she brought the hot dog covered in ketchup, mustard and relish. He said very plainly, "Take it back, I don't want all that garbage on it." She heard that he did not want it but did not really hear him. She brought him the spaghetti and garlic bread...he just picked at it. After about 20 minutes, one of the supervisors who had not heard any of this came by and said, "Bill, you did not eat your food." He said, "No, I did not." I spoke up and asked if they could bring him another hot dog and to ask him what he wanted. They did. He only wanted mustard. He got his hot dog and was very pleased. He ate every bite.
I am not judging as I had the freedom to sit at the table and overhear and really actively listen to these people. If I had all the money in the world, I would hire an advocate for each of them to act as a personal assistant for them all to ensure that every conceivable moment is giving them what they want.
At the same time this was happening, one of the other caregivers was bending over backwards to prepare the Cobb Salads exactly like one of the residents wanted. When that resident spoke his preference, many of the others spoke up and wanted the same treatment. She made sure that his salad was prepared EXACTLY as he stated. The look on his face when she brought it to him was magical. Like a child in a candy store.
My point in this part of the conversation should be to thank all the caregivers in the world who are going above and beyond to make these people happy. They try to satisfy some small like or memory they have. The caregivers are angels who have a place waiting in heaven.
As I sit next to Gary and hold his hand, bring him a blanket, snip his fingernails, organize his closet, unpack the chair that finally arrived, and to rub his arms.....I think, " Lord, help me continue to be the wife he needs. Help me to help him have a good, comfortable life."
At this point in his Dementia....that is all I can ask for....so, I left and went out for lunch and had a manicure and a pedicure. I fell asleep in the chair while receiving a leg massage.
I awoke to the reality that my caregiver duties are really not over. I merely changed positions on the team.
For example:
One female resident picked up her purse to go to her room for the night. She stopped by our table and said goodnight to another female resident. Lets call them Martha and Irene.
Martha: "Good night my friend. We had a good day."
Irene: "Yes, we did. Did they make you work as hard as I did?"
Martha: "Yes, but lets look at the bright side. We must have done good work because we still have jobs and they are letting us stay here tonight."
Irene: "Yep. What did they make you do?"
Martha: "I had to put together that engine out of the car that broke down."
Irene: "They are tricking us. I put together the same engine. Have a good night. I love you."
Martha: "I love you too and I'm glad you are my friend."
Irene: "I love you, too. Now go to sleep. I'll check on you later."
I am quite positive that neither of them recall this conversation but it is amazing to me that they pick up on each others' memories. In my mind, Martha probably worked in a factory during the war (WW2) and really did put together engines. Irene, on the other hand, was probably raising children and knew nothing of the industrial life but knows of strife and labor. As a witness, it was fascinating and amusing.
Meanwhile, Gary is sitting next to me listening to this whole conversation. For those who have read my blog, he is a repeater. He repeats two to three times various things he hears. If its the answer to a question or an original thought, he says it once.
So his words repeated hearing this conversation was:
"Look at the bright side. We have jobs.Look at the bright side. We have jobs.Look at the bright side. We have jobs."
And then, "I love you too and I'm glad you are my friend."
As he looked at me, he only said this once. He told me he loved me and that I was his friend. Then he followed with, "I love you darlin'". It was an original thought.
Other examples of the importance of listening to the residents....
Today, I was sitting at the dinner table with Gary and three other residents waiting on their food. They had a choice of spaghetti and garlic bread or a hot dog and chips. One of the male residents....we will call him Bill, told the caregiver that he wanted a hot dog. His eyes lit up with glee until she brought the hot dog covered in ketchup, mustard and relish. He said very plainly, "Take it back, I don't want all that garbage on it." She heard that he did not want it but did not really hear him. She brought him the spaghetti and garlic bread...he just picked at it. After about 20 minutes, one of the supervisors who had not heard any of this came by and said, "Bill, you did not eat your food." He said, "No, I did not." I spoke up and asked if they could bring him another hot dog and to ask him what he wanted. They did. He only wanted mustard. He got his hot dog and was very pleased. He ate every bite.
I am not judging as I had the freedom to sit at the table and overhear and really actively listen to these people. If I had all the money in the world, I would hire an advocate for each of them to act as a personal assistant for them all to ensure that every conceivable moment is giving them what they want.
At the same time this was happening, one of the other caregivers was bending over backwards to prepare the Cobb Salads exactly like one of the residents wanted. When that resident spoke his preference, many of the others spoke up and wanted the same treatment. She made sure that his salad was prepared EXACTLY as he stated. The look on his face when she brought it to him was magical. Like a child in a candy store.
My point in this part of the conversation should be to thank all the caregivers in the world who are going above and beyond to make these people happy. They try to satisfy some small like or memory they have. The caregivers are angels who have a place waiting in heaven.
As I sit next to Gary and hold his hand, bring him a blanket, snip his fingernails, organize his closet, unpack the chair that finally arrived, and to rub his arms.....I think, " Lord, help me continue to be the wife he needs. Help me to help him have a good, comfortable life."
At this point in his Dementia....that is all I can ask for....so, I left and went out for lunch and had a manicure and a pedicure. I fell asleep in the chair while receiving a leg massage.
I awoke to the reality that my caregiver duties are really not over. I merely changed positions on the team.
Tuesday, July 19, 2016
Surreal Return
I returned to Anaheim yesterday from a funeral trip to Northern California. As I left the airport I was excited to stop by Gary's Memory Care facility to visit him after not seeing him for a few days.
As I drove into the parking garage of the place, it seemed surreal to me. My thoughts were confused. How is it at 53 years old that I am driving into a Memory Care facility to visit my husband of 30 years? My husband is also getting benefits from Hospice. Is this real? As the all to reality of the situation came to me, I sucked it up and went upstairs.
I entered through the double doors which are set on an opener. When you hit a button the door swing open and I walk through as if I am a Charlie's Angel making an entrance. (Gotta have fun where I can!) The lobby was set up with lots of chairs facing the piano and the Assisted Living Residents were starting to sit down for a concert. Then I noticed that some of the residents from Memory Care were also coming out to the concert. No Gary. So, I gained entrance into the unit and found him sitting quietly on the sofa watching a movie.
I had arranged to have his hair cut while I was gone and they did a nice job but did not trim his beard as requested. His hair was combed differently. "Let it go, Ada." I tell myself this a lot for sanity sake. Some things just aren't as important.
He seemed happy to see me. Not happy like in the old days (before dementia) when he would have risen, given me a big kiss and asked how I am. No, just a smile of recognition and an I-bend-down-to-catch-a-smooch kind of kiss. I sat next to him and held his hand and caressed his arms. He liked it. I did, too.
I noticed that his fingernails needed trimming but I had not brought the trimmer so one of the caregivers found an emery board and I started to work. Just filing someone's nails takes awhile....but I had nothing else to do. He seemed to like the attention and the human touch.
He was dressed in his jeans and a yellow golf shirt. A nice look that was more reminiscent of Gary. As I filed away, one finger at a time, I was thankful for the gift of having him alive. I thought of the wife of the man just buried and grieved for her.
During the filing session, Gary was served chocolate, soft serve ice cream. He ate it on his own with a spoon and seemed to get it all in his mouth with no spills....until the last bite. In recent months, he has developed a movement when eating that slams his spoon or fork repeatedly on the plate or bowl, as if he is frustrated. The last flick of the spoon sent ice cream all over the front of that yellow shirt.
So, I walked him back to this room and changed his shirt. These moments together might seem trivial to the casual reader but to me, each is precious. It was around 3:45 and I planned on staying with him through dinner and into the evening. Those plans were changed when I received a text from home that our dog had a problem and had relieved herself all over the rugs. I knew I would be carpet cleaning so I finished Gary's nails and said a quick but loving goodbye. I was angry that once again, life is not allowing me what I feel I need with him. I considered possibly going back later in the evening.
After cleaning the carpets, I prepared a box to keep in my car for Gary's needs. It has two different beard trimmers, fingernail clippers and a file. That way, I can just do what I need when he needs it. I did not go back for a second visit.
So, its 6:30 am and I was up earlier than normal. I feel slightly melancholy but hopeful that tonight's visit will be better somehow. I am not sure what I am expecting except for time with him. My day will be full of university happenings and will keep my mind busy and off my personal situation.
As I drove into the parking garage of the place, it seemed surreal to me. My thoughts were confused. How is it at 53 years old that I am driving into a Memory Care facility to visit my husband of 30 years? My husband is also getting benefits from Hospice. Is this real? As the all to reality of the situation came to me, I sucked it up and went upstairs.
I entered through the double doors which are set on an opener. When you hit a button the door swing open and I walk through as if I am a Charlie's Angel making an entrance. (Gotta have fun where I can!) The lobby was set up with lots of chairs facing the piano and the Assisted Living Residents were starting to sit down for a concert. Then I noticed that some of the residents from Memory Care were also coming out to the concert. No Gary. So, I gained entrance into the unit and found him sitting quietly on the sofa watching a movie.
I had arranged to have his hair cut while I was gone and they did a nice job but did not trim his beard as requested. His hair was combed differently. "Let it go, Ada." I tell myself this a lot for sanity sake. Some things just aren't as important.
He seemed happy to see me. Not happy like in the old days (before dementia) when he would have risen, given me a big kiss and asked how I am. No, just a smile of recognition and an I-bend-down-to-catch-a-smooch kind of kiss. I sat next to him and held his hand and caressed his arms. He liked it. I did, too.
I noticed that his fingernails needed trimming but I had not brought the trimmer so one of the caregivers found an emery board and I started to work. Just filing someone's nails takes awhile....but I had nothing else to do. He seemed to like the attention and the human touch.
He was dressed in his jeans and a yellow golf shirt. A nice look that was more reminiscent of Gary. As I filed away, one finger at a time, I was thankful for the gift of having him alive. I thought of the wife of the man just buried and grieved for her.
During the filing session, Gary was served chocolate, soft serve ice cream. He ate it on his own with a spoon and seemed to get it all in his mouth with no spills....until the last bite. In recent months, he has developed a movement when eating that slams his spoon or fork repeatedly on the plate or bowl, as if he is frustrated. The last flick of the spoon sent ice cream all over the front of that yellow shirt.
So, I walked him back to this room and changed his shirt. These moments together might seem trivial to the casual reader but to me, each is precious. It was around 3:45 and I planned on staying with him through dinner and into the evening. Those plans were changed when I received a text from home that our dog had a problem and had relieved herself all over the rugs. I knew I would be carpet cleaning so I finished Gary's nails and said a quick but loving goodbye. I was angry that once again, life is not allowing me what I feel I need with him. I considered possibly going back later in the evening.
After cleaning the carpets, I prepared a box to keep in my car for Gary's needs. It has two different beard trimmers, fingernail clippers and a file. That way, I can just do what I need when he needs it. I did not go back for a second visit.
So, its 6:30 am and I was up earlier than normal. I feel slightly melancholy but hopeful that tonight's visit will be better somehow. I am not sure what I am expecting except for time with him. My day will be full of university happenings and will keep my mind busy and off my personal situation.
Friday, July 15, 2016
Sickness preventing Visiting....
I have a head cold and a slight fever.....this is really inconvenient. It is a bad situation because I am supposed to travel tomorrow to a funeral in the Bay Area (am still going) but I don't feel right going to see Gary while I'm sick.
His body is at great risk and I can't risk him getting a cold or worse, pneumonia. I saw him for a short period yesterday and was there in time to feed him dinner. He ate voraciously and had a second piece of pie. I told him that I was starting to feel sick and that I might not come by for a few days....I am not sure if he understood or not.
I feel bad when I can't see him everyday. I love him even though he is a shell of the person from before the Dementia. Frequently he sparks up and has similarity to my Gary.
Being around him means more to me as I see other deaths around me. My friend Harvey died on Tuesday and another childhood friend died today in a motorcycle accident. As we age, this will become more prevalent but knowing this does not make it easier.
So, seeing my bibbed husband while I am feeding him his dinner is not such a bad thing. He is mentally, partially still here. I will hold on to that as long as I can.
His body is at great risk and I can't risk him getting a cold or worse, pneumonia. I saw him for a short period yesterday and was there in time to feed him dinner. He ate voraciously and had a second piece of pie. I told him that I was starting to feel sick and that I might not come by for a few days....I am not sure if he understood or not.
I feel bad when I can't see him everyday. I love him even though he is a shell of the person from before the Dementia. Frequently he sparks up and has similarity to my Gary.
Being around him means more to me as I see other deaths around me. My friend Harvey died on Tuesday and another childhood friend died today in a motorcycle accident. As we age, this will become more prevalent but knowing this does not make it easier.
So, seeing my bibbed husband while I am feeding him his dinner is not such a bad thing. He is mentally, partially still here. I will hold on to that as long as I can.
Tuesday, July 12, 2016
I forgot to do what?
Tonight provided a new experience in my life. A Dementia support group. After work, I headed toward Gary's place and spent less than a half hour with him before I joined my first facility sponsored support group.
I did not say goodbye to Gary, I only said that I was going to a meeting and that I would return. I was the next to last to enter the room so I sat through all the other participants sharing their stories about their loved ones. They are all at varying stages of coping with the horrible disease that has devastated the family units we know.
As the stories unfolded, I found myself listening intensely with no emotion coming to my heart. It was strangely cold as I sat there and saw people cry and pour out emotion. I have become way too good at suppressing my emotions.
After 1.5 hours, it was my turn. I don't know how long it was supposed to last but I found that I wanted to go home and felt the others did, too. I shared anyway and got a little teary eyed. I really don't recall what part of the story I shared but others seemed to listen and truly care. I knew when the talk turned to funny stories of events at the Unit that we were all done.
I had not had dinner and was tired and found myself in the parking garage. It was not until I was half way home that I realized I had not gone back and said goodnight to Gary. I was not so devastated but certainly bothered by my carelessness. During the session, it became apparent that it becomes easier to leave and to not go everyday to visit. Tonight proved the point. I am undecided if this is something I want to become accustomed to doing. He is my husband....shouldn't I want to see him everyday? After all, he still knows me.
For now, I will do what comes naturally. Every time I see him my heart still flutters as I love him so much. Every time I see him my heart breaks because I miss him so much. At least my heart is still functioning despite the changes in rapidity of the pump.
Thanks to all for your unending support. I think part of my not reacting in support group is because I have such great support from blog readers. Times may change as we get nearer to death, but for now....I'm okay.
I did not say goodbye to Gary, I only said that I was going to a meeting and that I would return. I was the next to last to enter the room so I sat through all the other participants sharing their stories about their loved ones. They are all at varying stages of coping with the horrible disease that has devastated the family units we know.
As the stories unfolded, I found myself listening intensely with no emotion coming to my heart. It was strangely cold as I sat there and saw people cry and pour out emotion. I have become way too good at suppressing my emotions.
After 1.5 hours, it was my turn. I don't know how long it was supposed to last but I found that I wanted to go home and felt the others did, too. I shared anyway and got a little teary eyed. I really don't recall what part of the story I shared but others seemed to listen and truly care. I knew when the talk turned to funny stories of events at the Unit that we were all done.
I had not had dinner and was tired and found myself in the parking garage. It was not until I was half way home that I realized I had not gone back and said goodnight to Gary. I was not so devastated but certainly bothered by my carelessness. During the session, it became apparent that it becomes easier to leave and to not go everyday to visit. Tonight proved the point. I am undecided if this is something I want to become accustomed to doing. He is my husband....shouldn't I want to see him everyday? After all, he still knows me.
For now, I will do what comes naturally. Every time I see him my heart still flutters as I love him so much. Every time I see him my heart breaks because I miss him so much. At least my heart is still functioning despite the changes in rapidity of the pump.
Thanks to all for your unending support. I think part of my not reacting in support group is because I have such great support from blog readers. Times may change as we get nearer to death, but for now....I'm okay.
Sunday, July 10, 2016
I'm married to a different man!
I woke up early again. I laid in the bed thinking of my day yesterday. I spent about 1.5 hours with Gary. That is not enough to me.
It is still awkward figuring out where I fit in there. When I arrived, he and the other residents had just returned from a "field trip" to the Assisted Living Side of the facility (about 200 feet away from his area). They had gone to a church service and all seemed to be in varying states of being. Gary was wide awake and seemed to be more alert and stimulated. Others were either in the same state or were starting to nap.
Gary was sitting in his new wheelchair and seemed comfortable and unaware of it. I turned him a little sideways, kissed him and made small talk. He kept reading the country on my blouse "Aruba". I told him that we had visited Aruba once together and showed him the turtle bracelet I wear that he bought me there. I asked if he remembered going there on a business trip with our then friend, Frank. He said no but smiled when he touched the turtles.
During my time there, we loved on the unit dog Annie. She is a six month old white puffy dog that has taken a liking to me. As she pounced at Gary's feet to be picked up he said, "Up Diva Gerl!" I explained that Diva Gerl was at my house and picked up Annie and let him snuggle with her. After about 15 seconds, she lost interest and wiggled away. He had a moment of a smile.
We watched part of a video on New Zealand. Though he did not watch the TV, he repeated much of what he heard. Like many other times at our house, I kicked off my sandals and put my leg over his lap. He instantly stopped shaking his leg and focused on my foot. He rubbed it, separated my toes and massaged it lightly until I took it away. He started shaking again. I put the other foot in his lap. Again, he stopped the body wrenching and focused on my foot.
We have to find a way to give him something to do tactilely more often. I could be wrong but it seems all that movement, uncontrolled would just wear on him.
When they started moving the residents around the room to seat them at their lunch tables I left. It is awkward sitting next to him. It is a horrible experience kissing him Goodbye and walking away. After leaving, I decided that I need to get over feeling awkward and sit next to him and be with him. I have NOTHING better to do. I am the one with the problem and as a healthy individual and his wife, I have every power to overcome my created issue.
So, today, after I go to church, I will attempt to stay there all afternoon. I miss Gary so much. But I also have to realize that the Gary I miss is not the Gary I visit. He is different. He still has feelings....I just have to look deeper.
On his chart yesterday I noticed that they have him labeled as Introverted and quiet. Wow! Certainly a far cry from the man of before the FTD. He was outgoing and certainly never quiet. But now...he is different. I now love a very different man.
After leaving, I came home and did laundry and other stuff. Our dog needed to go to the vet so we made a trip down the Anaheim Hills. After 45 minutes in the waiting room, Diva Gerl was shaking just like Gary does.....its all nerves.
She will need an echocardiogram as she has developed a heart murmur and after all shots, treatments etc....I had spent almost $400. In August, she will be boarded while I visit my family and friends in Virginia. While there, she will have a medical treatment. I have never before considered the cost when making decisions.
With Gary's housing and care costing around $6500 - $7000 per month, I have started living differently and making decisions based on "how long will the money last?" We are okay for now, but it is certainly a concern.
If you have the wherewithal, buy your family member insurance that will cover long term care while they are still healthier. The cost of long term care is astronomical if you do not have insurance and if you wait...it could be too late.
Thank God I have a good job and some savings.
For years, Gary worked at home. I so miss being somewhere else and picking up the phone to call him and hearing his signature "Happy Day!" when he answered the phone. For now, I wish you all a "Happy Day" from Gary and Ada. I intend to make it one.
It is still awkward figuring out where I fit in there. When I arrived, he and the other residents had just returned from a "field trip" to the Assisted Living Side of the facility (about 200 feet away from his area). They had gone to a church service and all seemed to be in varying states of being. Gary was wide awake and seemed to be more alert and stimulated. Others were either in the same state or were starting to nap.
Gary was sitting in his new wheelchair and seemed comfortable and unaware of it. I turned him a little sideways, kissed him and made small talk. He kept reading the country on my blouse "Aruba". I told him that we had visited Aruba once together and showed him the turtle bracelet I wear that he bought me there. I asked if he remembered going there on a business trip with our then friend, Frank. He said no but smiled when he touched the turtles.
During my time there, we loved on the unit dog Annie. She is a six month old white puffy dog that has taken a liking to me. As she pounced at Gary's feet to be picked up he said, "Up Diva Gerl!" I explained that Diva Gerl was at my house and picked up Annie and let him snuggle with her. After about 15 seconds, she lost interest and wiggled away. He had a moment of a smile.
We watched part of a video on New Zealand. Though he did not watch the TV, he repeated much of what he heard. Like many other times at our house, I kicked off my sandals and put my leg over his lap. He instantly stopped shaking his leg and focused on my foot. He rubbed it, separated my toes and massaged it lightly until I took it away. He started shaking again. I put the other foot in his lap. Again, he stopped the body wrenching and focused on my foot.
We have to find a way to give him something to do tactilely more often. I could be wrong but it seems all that movement, uncontrolled would just wear on him.
When they started moving the residents around the room to seat them at their lunch tables I left. It is awkward sitting next to him. It is a horrible experience kissing him Goodbye and walking away. After leaving, I decided that I need to get over feeling awkward and sit next to him and be with him. I have NOTHING better to do. I am the one with the problem and as a healthy individual and his wife, I have every power to overcome my created issue.
So, today, after I go to church, I will attempt to stay there all afternoon. I miss Gary so much. But I also have to realize that the Gary I miss is not the Gary I visit. He is different. He still has feelings....I just have to look deeper.
On his chart yesterday I noticed that they have him labeled as Introverted and quiet. Wow! Certainly a far cry from the man of before the FTD. He was outgoing and certainly never quiet. But now...he is different. I now love a very different man.
After leaving, I came home and did laundry and other stuff. Our dog needed to go to the vet so we made a trip down the Anaheim Hills. After 45 minutes in the waiting room, Diva Gerl was shaking just like Gary does.....its all nerves.
She will need an echocardiogram as she has developed a heart murmur and after all shots, treatments etc....I had spent almost $400. In August, she will be boarded while I visit my family and friends in Virginia. While there, she will have a medical treatment. I have never before considered the cost when making decisions.
With Gary's housing and care costing around $6500 - $7000 per month, I have started living differently and making decisions based on "how long will the money last?" We are okay for now, but it is certainly a concern.
If you have the wherewithal, buy your family member insurance that will cover long term care while they are still healthier. The cost of long term care is astronomical if you do not have insurance and if you wait...it could be too late.
Thank God I have a good job and some savings.
For years, Gary worked at home. I so miss being somewhere else and picking up the phone to call him and hearing his signature "Happy Day!" when he answered the phone. For now, I wish you all a "Happy Day" from Gary and Ada. I intend to make it one.
Friday, July 8, 2016
Holding hands with Gary.
Today while I was at work, I received an email from the coordinator at Gary's new home. It read:
"Hi Ada,
Just wanted to let you know about a couple great moments we had with Gary today.
Earlier today he was able to join in on a balance and strength building exercise class we held here at the community. This instructor is also our Zumba instructor and she loves to incorporate up beat fun music during her classes. Gary really seemed to enjoy himself and sang along to many of the songs she was playing during the class. At times he needed a little assistance with following the different exercise moves she was prompting the class to do but a care manager sat with him and at times would help him lift his arms up and guide the movements to follow the instructors example. For the most part he was able to follow along himself for a good chunk of the class and really seemed to enjoy the overall experience.
Also, this afternoon the residents were participating in a spelling bee activity. At first it seemed he many have some trouble participating in this so he sat listening and watching the other residents spell when prompted. Then we noticed after he would hear a word be given to a resident to spell, he would begin to quietly spell it to himself under his breath- he spelled the words quite quickly and was correct each time. We then encouraged him to participate in the spelling bee and he spelled each word he was given correctly.
Our staff is getting to know him better and better each day, and when small moments like this happen it really affirms why we all love what we do.
Just wanted to share these moments with you! Take care and have a great day/weekend J."
She did not have to send me this, but she did. I am so glad they are including me and thinking of me while he is getting excellent care.
This evening, after work, I stopped by to visit during dinner. He as sitting at a table waiting on his dinner of waffles, fruit and sausage. I sat and watched from afar. The aide put his food down (she did not know I was there) and said, "Here is your waffle and sausage Gary. I cut them in strips so you can pick them up in your fingers." He did not seem to understand at first, but picked up his sausage and took a bite. He picked up his fork and tried to cut the waffle and got frustrated and like the last few months, he banged his fork against the bowl while trying to cut it. I could not take it and decided to help him. I stood beside him and cut his food into smaller bites and assisted him in eating the rest of his dinner. I knew he was appreciative.
I talked to him and tried to engage him in conversation. I asked him if his teeth felt better since he went to the dentist and got a cleaning yesterday. He said yes and smiled so I could see his grin.
I looked at his face when he smiled. It was different smile. It was what I call a "courtesy smile" and he knew what he was doing. So, I chose to sit and hold his hand.
The entire time I was there, his legs were shaking as if tapping his foot to a song in 3/4 time. Non-stop. For two hours. It is worse than it was before so I took the opportunity to try to communicate with the Nurse and/or the doctor. The nurse introduced herself and immediately told me how much she and the staff love Gary. We discussed his medication and his new schedule. I indicated that his FTD has caused him to shake in the past few months but that his shaking is significantly worse.
I was surprised that she knew enough of him that she said he shakes less when he has something to do with his hands. She knew this and said she would share it with all the others. I was concerned that his body will wear out faster if he continues at this pace. All the staff responds with genuine concern. I really don't think I could have chosen a better place for him.
Tomorrow, I will visit him again. I love him so much and miss him so desperately. I not only miss the man with Dementia at home but I miss the man I married and lived with for 30 years. That man is still in his brain and his soul but I am fearful that the personality I truly loved will never be accessed again. It is in safe keeping until he gets to heaven.
I love my Gary!
Lately I have been rising (at least awakening) early. I'm apparently getting enough sleep.
Yesterday, I had a long day at work and knew I would not make it to visit Gary so I went to visit him about 7:30 am.
He had been showered and combed and was sitting in the dining room at a table all by himself waiting on breakfast. All the others in the room were doing the same.
I greeted him with a loving, "Hi, Garball." He said "Good Morning." He knew me. I had approached him from the left and sat next to him. I forgot that he doesn't really relate to things on his left and other than the time I moved his face toward me, he never looked at me. He talked and answered my questions but it was if there was a wall there. This distance is a function of his brain. I should sit on his right.
I stayed for about 45 minutes until breakfast was being served. I tried to get him to converse and he made it obvious that he just didn't have it in him. I caressed him and he liked it. I told him of my love and he responded in kind. There is a difference in when he is repeating what he hears and what is an original thought or emotion. If its his thought, he says it once.
I thought about him sitting in that chair as my day progressed. I don't obsess over it, but when I think of him, it saddens me. He is bent over and lost his zeal.
Jessica, his former caregiver, picked him up and took him to the dentist for a cleaning and to lunch. She noticed that his gait is still incredibly slow but no slower. She saw no degradation of his body or mind. Its hard to tell when one is near him everyday.
I'm not sure what each day brings. I am focusing heavily on my job and engaging with my associates. I have regained some professional UMPF that I had not realized was missing. I still have not found the new normal but I can only imagine it will take quite a while.
I love my Gary. I miss seeing him for long periods of time and just "being". Saturday is coming and I hope to spend more time with him. Hopefully, he will still know I'm there and I can get in some practice "being here now".
Yesterday, I had a long day at work and knew I would not make it to visit Gary so I went to visit him about 7:30 am.
He had been showered and combed and was sitting in the dining room at a table all by himself waiting on breakfast. All the others in the room were doing the same.
I greeted him with a loving, "Hi, Garball." He said "Good Morning." He knew me. I had approached him from the left and sat next to him. I forgot that he doesn't really relate to things on his left and other than the time I moved his face toward me, he never looked at me. He talked and answered my questions but it was if there was a wall there. This distance is a function of his brain. I should sit on his right.
I stayed for about 45 minutes until breakfast was being served. I tried to get him to converse and he made it obvious that he just didn't have it in him. I caressed him and he liked it. I told him of my love and he responded in kind. There is a difference in when he is repeating what he hears and what is an original thought or emotion. If its his thought, he says it once.
I thought about him sitting in that chair as my day progressed. I don't obsess over it, but when I think of him, it saddens me. He is bent over and lost his zeal.
Jessica, his former caregiver, picked him up and took him to the dentist for a cleaning and to lunch. She noticed that his gait is still incredibly slow but no slower. She saw no degradation of his body or mind. Its hard to tell when one is near him everyday.
I'm not sure what each day brings. I am focusing heavily on my job and engaging with my associates. I have regained some professional UMPF that I had not realized was missing. I still have not found the new normal but I can only imagine it will take quite a while.
I love my Gary. I miss seeing him for long periods of time and just "being". Saturday is coming and I hope to spend more time with him. Hopefully, he will still know I'm there and I can get in some practice "being here now".
Monday, July 4, 2016
How long does "New Normal" take to find?
Other than when he or I went on business trips, backpacking or visiting family, Gary and I were rarely apart for long periods of time. We always came home to each other. In 30 years, I never considered that Gary and I would be alive but NOT live together. It never crossed my mind.
My husband is alive and being cared for in Memory Care. In looking at the situation, he appears to be settling in and has accepted his new situation. I have visited him for an hour or two every day to try and be with him but not confuse him. Tomorrow, I go back to work and will only be able to see him at night. Its a short window from getting off work and his bedtime. I guess its not different than before when I would get off work and come home. We were only together a few hours and then off to bed. Somehow, it is very different.
As I walk through our home, I look at his belongings differently. What should I do with his shoes? He still has dress Italian loafers....he will never need them. What about all the sandals and tennis shoes? My goodness, he had lots of shoes and still MANY more clothes that he will never wear. Do I keep them? Donate them? Sell them? Or just leave them where they are? What is my hurry?
I feel as if I need to be doing something.....all the time. I have had a few days rest and am now restless. Should I buy new furniture to replace our well worn furniture from 1985? No, I might need the money down the road. His care is very expensive.
I have seen stories and heard of women who keep their husbands clothes because they smell like him. I rolled over in the bed last night and tried to smell his pillow to see if there was an aroma of him....nothing. Gary does not have a distinct smell and I recently washed the sheets so I cannot relate to that coping mechanism.
He has closets full of clothes. I never thought of our belongings as excess. Now, it seems weird and inappropriate. We just always had what we needed when we needed it.
I try to plan my mornings and evenings in the new life. This morning I awoke at 6 am....I never would have done that before due to exhaustion. What will be the best use of my time? Reading? Exercising? Walking the dog? I sort of feel guilty that I am free to do whatever I want or need to do. I am also intelligent enough to know that it is okay.
I think of Gary sitting in that parlor at Sunrise. His body is starting to wither and his mind is partially there. Today, I sat with him during a visit from Therapy Dogs. He liked touching them and being near them. I watched him not participate in the stretching exercise because he was not aware of what they were doing due to us being so far back in the room. I tried to get him to stretch with the others. He moved his hands a little but seemed to drift back to somewhere else.
At one point he said, "I have to pee." Rather than try to get him up and take him to the restroom, I made the conscious choice to ask one of the caregivers to take him. That is how this whole situation was sold, right? "All you have to do is visit and be the wife." So, I tried it. I'm not sold yet.
The guy took Gary to the restroom right off the parlor where everyone sits. Shortly thereafter he called for help as he needed pull ups and another pair of pants for Gary. I knew that meant that he probably missed and peed on himself because the guy did not know to tell him exactly what to do. If he does not receive extensive prompts, that happens. I just sat there and let the folks do their job. It felt as if I had abandoned my duties. He eventually came back to our seat, clean and relieved. I have to let go of the caregiver part.
When I first got there, I shaved him. They have not shaved him in 4 days. The Hospice nurse had given him a bath and brushed his teeth. I asked her why they had not shaved him and she said that he needs an electric shaver. So, I will see that he gets one. Apparently, they don't want to use a safety razor.
I also cut his finger nails and filed them. He said a hearty thank you. I will continue to do this as it is a good way to be near him and touch him.
While we sit in the parlor, I hold his hands and rub his arms. He likes the touch and gives me approval through sounds but not so much in words. If I ask him questions, he repeats the question and then usually answers. He has a far off look in his eyes.
When I left today he told me he loved me and when I said I would see him tomorrow after work he said, "Okay. Tomorrow after work." I know he has no concept of what time means. I have to look at the hearts of the people who are caregivers for him. They are giving their all to take care of those people and give them quality of life. My husband is one of those people. Who would have ever guessed?
I have to accept the fact that he will never be home. How long does the "new normal" take to find?
My husband is alive and being cared for in Memory Care. In looking at the situation, he appears to be settling in and has accepted his new situation. I have visited him for an hour or two every day to try and be with him but not confuse him. Tomorrow, I go back to work and will only be able to see him at night. Its a short window from getting off work and his bedtime. I guess its not different than before when I would get off work and come home. We were only together a few hours and then off to bed. Somehow, it is very different.
As I walk through our home, I look at his belongings differently. What should I do with his shoes? He still has dress Italian loafers....he will never need them. What about all the sandals and tennis shoes? My goodness, he had lots of shoes and still MANY more clothes that he will never wear. Do I keep them? Donate them? Sell them? Or just leave them where they are? What is my hurry?
I feel as if I need to be doing something.....all the time. I have had a few days rest and am now restless. Should I buy new furniture to replace our well worn furniture from 1985? No, I might need the money down the road. His care is very expensive.
I have seen stories and heard of women who keep their husbands clothes because they smell like him. I rolled over in the bed last night and tried to smell his pillow to see if there was an aroma of him....nothing. Gary does not have a distinct smell and I recently washed the sheets so I cannot relate to that coping mechanism.
He has closets full of clothes. I never thought of our belongings as excess. Now, it seems weird and inappropriate. We just always had what we needed when we needed it.
I try to plan my mornings and evenings in the new life. This morning I awoke at 6 am....I never would have done that before due to exhaustion. What will be the best use of my time? Reading? Exercising? Walking the dog? I sort of feel guilty that I am free to do whatever I want or need to do. I am also intelligent enough to know that it is okay.
I think of Gary sitting in that parlor at Sunrise. His body is starting to wither and his mind is partially there. Today, I sat with him during a visit from Therapy Dogs. He liked touching them and being near them. I watched him not participate in the stretching exercise because he was not aware of what they were doing due to us being so far back in the room. I tried to get him to stretch with the others. He moved his hands a little but seemed to drift back to somewhere else.
At one point he said, "I have to pee." Rather than try to get him up and take him to the restroom, I made the conscious choice to ask one of the caregivers to take him. That is how this whole situation was sold, right? "All you have to do is visit and be the wife." So, I tried it. I'm not sold yet.
The guy took Gary to the restroom right off the parlor where everyone sits. Shortly thereafter he called for help as he needed pull ups and another pair of pants for Gary. I knew that meant that he probably missed and peed on himself because the guy did not know to tell him exactly what to do. If he does not receive extensive prompts, that happens. I just sat there and let the folks do their job. It felt as if I had abandoned my duties. He eventually came back to our seat, clean and relieved. I have to let go of the caregiver part.
When I first got there, I shaved him. They have not shaved him in 4 days. The Hospice nurse had given him a bath and brushed his teeth. I asked her why they had not shaved him and she said that he needs an electric shaver. So, I will see that he gets one. Apparently, they don't want to use a safety razor.
I also cut his finger nails and filed them. He said a hearty thank you. I will continue to do this as it is a good way to be near him and touch him.
While we sit in the parlor, I hold his hands and rub his arms. He likes the touch and gives me approval through sounds but not so much in words. If I ask him questions, he repeats the question and then usually answers. He has a far off look in his eyes.
When I left today he told me he loved me and when I said I would see him tomorrow after work he said, "Okay. Tomorrow after work." I know he has no concept of what time means. I have to look at the hearts of the people who are caregivers for him. They are giving their all to take care of those people and give them quality of life. My husband is one of those people. Who would have ever guessed?
I have to accept the fact that he will never be home. How long does the "new normal" take to find?
Sunday, July 3, 2016
The Lord Works in Mysterious Ways
Its been three days since my husband of 31 years moved into Memory Care and out of our home. It appears we are both adjusting well.
I have spent some time around the house eliminating things that we don't need with Gary living elsewhere. I learned to disassemble raised toilets with handle bars. We are learning that we don't have to lock certain doors anymore. WHen one has been sitting on raised toilet seat for months and then the toilet seat is lowered, it is important to adjust the trajectory of sitting down.....it can be quite a fall.
I have visited Gary for brief periods everyday and getting accustomed to him being "in a different place". By that, I mean several things. The Hospice doctor (with my consultation) had taken Gary off some of the medications and nutritionals he was taking. The doctor studied Pharmacology at UC Santa Cruz and has an extensive background with naturals. I don't know whether Gary's slight change in behavior is environmental or medication related. His former leg motions have increased significantly and now moved to his arms. Its as if he is drumming most of the time. We sat next to Elsa today at lunch and while I fed Gary, I noticed that she noticed his constant movement. I asked if Gary's moving was bothering her and she replied, "No, he just has a lot of energy. Its good for him to get it out!" Sitting at the table with six Dementia patients puts the world into perspective.
The other difference in Gary is there is so much input in the room that it takes him a few minutes to zoom in on me being there. He still repeats what he hears and I have to filter his repetition of phrases with answers to questions I may ask. It challenges every bit of patience I have. However, when I am there it is my goal to "BE HERE NOW" and give him 100% attention.
I stroke him, rub his arms and hands and make sure he feels love. He tells me that he loves me, unprompted, and still smiles when I ask for a picture.
He is well dressed, has no odor and seems to be happy. He starts with music therapy this week so I took his bongo drums for him to play during the session. Apparently they go in a private room for that. Thank Heaven the other residents will not have to hear it!
In the main room where he spends most of the day, they have a cd player and a television. I glanced at their collection and felt sorry for Gary. No Pink Floyd, Grateful Dead or anything close to rock. On my way out the house this morning, I grabbed some Elvis and Fleetwood Mac to add to their collection. The workers loved it and immediately put on Fleetwood Mac for lunch. Many in the room were signing or tapping their feet while they had lunch and afterward. I also donated some old Johnny Carson dvds for when they get sick of watching "Chitty Chitty Bang Bang".
When it was time for bowling, I told Gary I was leaving. All the ladies in the room waived Goodbye. I talk to them and try to be sweet so I think they all like me. My community influence just increased! Who would have thought that my next assignment in life is to be sweet to a bunch of old people in Memory Care. The Lord works in mysterious ways.
I have spent some time around the house eliminating things that we don't need with Gary living elsewhere. I learned to disassemble raised toilets with handle bars. We are learning that we don't have to lock certain doors anymore. WHen one has been sitting on raised toilet seat for months and then the toilet seat is lowered, it is important to adjust the trajectory of sitting down.....it can be quite a fall.
I have visited Gary for brief periods everyday and getting accustomed to him being "in a different place". By that, I mean several things. The Hospice doctor (with my consultation) had taken Gary off some of the medications and nutritionals he was taking. The doctor studied Pharmacology at UC Santa Cruz and has an extensive background with naturals. I don't know whether Gary's slight change in behavior is environmental or medication related. His former leg motions have increased significantly and now moved to his arms. Its as if he is drumming most of the time. We sat next to Elsa today at lunch and while I fed Gary, I noticed that she noticed his constant movement. I asked if Gary's moving was bothering her and she replied, "No, he just has a lot of energy. Its good for him to get it out!" Sitting at the table with six Dementia patients puts the world into perspective.
The other difference in Gary is there is so much input in the room that it takes him a few minutes to zoom in on me being there. He still repeats what he hears and I have to filter his repetition of phrases with answers to questions I may ask. It challenges every bit of patience I have. However, when I am there it is my goal to "BE HERE NOW" and give him 100% attention.
I stroke him, rub his arms and hands and make sure he feels love. He tells me that he loves me, unprompted, and still smiles when I ask for a picture.
He is well dressed, has no odor and seems to be happy. He starts with music therapy this week so I took his bongo drums for him to play during the session. Apparently they go in a private room for that. Thank Heaven the other residents will not have to hear it!
In the main room where he spends most of the day, they have a cd player and a television. I glanced at their collection and felt sorry for Gary. No Pink Floyd, Grateful Dead or anything close to rock. On my way out the house this morning, I grabbed some Elvis and Fleetwood Mac to add to their collection. The workers loved it and immediately put on Fleetwood Mac for lunch. Many in the room were signing or tapping their feet while they had lunch and afterward. I also donated some old Johnny Carson dvds for when they get sick of watching "Chitty Chitty Bang Bang".
When it was time for bowling, I told Gary I was leaving. All the ladies in the room waived Goodbye. I talk to them and try to be sweet so I think they all like me. My community influence just increased! Who would have thought that my next assignment in life is to be sweet to a bunch of old people in Memory Care. The Lord works in mysterious ways.
Thursday, June 30, 2016
Mission Accomplished: Move to Memory Care Complete
Gary's move into Memory Care is complete.
I awoke around 4:00am and laid in the bed next to Gary just looking at him. I knew it was the last time.
Jessica was due at 7:30 to shower and dress Gary and keep him while Heather and I went to the new place and moved in the belongings. Instead, I showered and dressed Gary. This activity can be very stressful but today it was merely a labor or love. He cooperated fully and seemed to understand as I talked to him about "last times".
Heather took Xander to school which is right down the street from "The Happy Place" and met me there to start the move in process. We hung all the pictures, made the bed, hung his clothes, labeled his new furniture with its contents. When we felt it was complete, we went home to get him.
Here are some pics of the décor.
I awoke around 4:00am and laid in the bed next to Gary just looking at him. I knew it was the last time.
Jessica was due at 7:30 to shower and dress Gary and keep him while Heather and I went to the new place and moved in the belongings. Instead, I showered and dressed Gary. This activity can be very stressful but today it was merely a labor or love. He cooperated fully and seemed to understand as I talked to him about "last times".
Heather took Xander to school which is right down the street from "The Happy Place" and met me there to start the move in process. We hung all the pictures, made the bed, hung his clothes, labeled his new furniture with its contents. When we felt it was complete, we went home to get him.
Here are some pics of the décor.
When I got home, Gary was sitting on the sofa in a blanket watching television with Jessica his caregiver. At some point, I went over to him and once again explained that he would be moving away today to a place where he will be well taken care of and be happy. He had a glimmer of recognition of my words and then started reading the close captioning on the television. That was exactly what I needed as a premonition that maybe this would not be so bad.
Upon arrival, we walked into the unit and all the caregivers rushed to welcome him. We made our way to his new room and showed him the pictures which immediately received no recognition. He sat down on the bed and started to lay back....drained. We had him sit up just as his nurse came in the door with the unit Puppy named Annie. Six months old and all tongue, she introduced herself to Gary and he said, "My dog."
After a few minutes, we took him to the lunch room where he was introduced to his table mates and we left to go to lunch.
Jessica and I had great conversation at lunch and it appeared that Gary's caregiver was also on duty to serve the wife. It was nice to have someone who understood my angst.
We arrived back at the Happy Place to find Gary sitting in their living room at a table. I went to his room, checked on a few things and found that his bed was not working properly. They were dispatching Hospice to fix the bed.
Standing in his room was surreal. Gary will be LIVING there without me, without Diva. What a concept after 30 years of rarely being apart.
I decided it was time to go. I went into the room where he was still sitting and said, "I'm going home now. I will visit you tomorrow. I kissed him on the lips and he said goodbye. As I walked away, I turned and looked at him and blew him a kiss like I have a thousand times before when leaving for work. The trick is to "catch" the kiss and put it down the front of your shirt and pat over your heart as if the kiss is making your heart beat. In perfect form, he caught the kiss, made his heart beat and blew back a kiss with a smile. I caught it and made my heart "beat."
I could leave now....my work in transitioning him was complete and accepted.
I had envisioned that part of the day to be the hard part. I was wrong.
As I sat in the car in the parking garage, I became numb. I started the car and realized that I did not know what to do, where to go. For 2+ years, I have done nothing but go to work and take care of Gary. It was 1:30 in the afternoon. What does one do with free time?
Though it may sound silly, I was paralyzed. I saw that my friend Shirley had sent an email and I immediately called her. She was so gracious in taking my impromptu call and cried more than I did. We decided that I should get a pedicure and manicure at a new place where I knew no one. It would be easy as I would not have to answer questions, nor talk and could just chill.
I did. It was nice having time to myself but it also made me realize that I will have a lot of time to myself.
I came home, put out the trash. I eliminated every trace of incontinence....all the extra pads and diapers. I am done with that in the home.
I received an email from Gary's coordinator that said they had fixed his broken bed motor and he was sitting in the living area with other residents playing a trivia game. She said he had answered some questions and seemed happy.
For now, I will start seeking the new normal. Tonight's bedtime for Diva and I will be unusual. I hope we can sleep.
Monday, June 27, 2016
Preparing for the move to Memory Care
Gary will be moving into "Memory Care" in three days. So, in order to get ready, I had to do a few things that frankly, were very uncomfortable.
First, on several occasions I have attempted to tell him that he is going to live at "The Happy Place" where people can take care of him better than I can. The delivery has to be just perfect in that event that he actually understands. I certainly don't want the news to be flippant or insensitive. He still doesn't get it.
On Saturday, I spent the day looking at check lists and packing his belongings. Every piece of clothing had to be thought out to seek the perfect item. Pants have to preferably have elastic waist with no draw string. Shirts have to be hot water friendly and wrinkle proof. T-shirts have to be soft and not provoke too many questions as to make him uncomfortable if he can't answer. (This is my problem, not his). Every item had to be individually marked "Gary" or "G" if that is all that fits. Each sock, shirt, pants, robe, etc was labeled with a permanent marker that hopefully will not wash off after use.
I folded everything carefully, adding hangars where appropriate and labeling the box. What did I forget? I tried to realize that he is only 8 miles away and I am going to visit all the time and can take clothes as necessary.
I ordered the hamper for dirty clothes, replenished all the personal toiletries....the right shampoo, soap, toothpaste, toothbrush and deodorant. Labeled everything.
The picture frames came in today for the special photographs I had reprinted for his wall décor. I think they are perfect. I packed his favorite Bible plaque and added in "The Lord's Prayer". He still says it every night with prompting so hopefully, he will see it from his bed and maybe take the hint. I can't believe that after 30 years I will no longer be sleeping with my husband. I'm not referencing sex....I'm talking about rolling over in the night, touching his shoulder and telling him I love him. He always responds in kind. The thought of rolling over one night before I realize he is really away and trying to touch his hand or stroke his brow.....and he won't be there. My heart breaks.
Meanwhile, I have one of the second most important weeks of our year at the University. Tomorrow is a critical day in regard to preparing for our Reaffirmation. I have a caregiver coming at 7 am so I can get to work on time. He will not go to Adult Day Care tomorrow. His last day will be Wednesday. I stopped when I dropped him off this morning and told his social worker that he was transferring to Memory Care. She got big alligator tears in her eyes and did everything she could not to cry. She said, "We love having Gary, he is so sweet". I responded with the same emotion and she looked at me as if she could feel my despair. I managed not to cry....I had a conference video call a half hour later and could not risk the mascara and puffy eyes. There will be time for that after Gary is safely tucked into his new home.
This is all so unbelievable to me. It is unreal to many who haven't read the blog for a while and casually drop in to see how we are doing. I think Shock is a good word to describe it.
Tonight, as we sat on the sofa like every other night, he looked at me and said, "I want to lay down." I moved around the pillows, laid out the bed pad and made him comfortable. As I type, he is talking and reading the close captioning on our nightly dose of "MASH".
Then, there is the reality that my husband has a terminal illness that qualifies him for Hospice care. Really? Hospice? That means he will die. We all do......just not so soon. He may live two months, two years or more? No one knows what hell we might encounter before he joins his Lord. I just pray that he is spared pain....I have enough emotional pain for both of us.
First, on several occasions I have attempted to tell him that he is going to live at "The Happy Place" where people can take care of him better than I can. The delivery has to be just perfect in that event that he actually understands. I certainly don't want the news to be flippant or insensitive. He still doesn't get it.
On Saturday, I spent the day looking at check lists and packing his belongings. Every piece of clothing had to be thought out to seek the perfect item. Pants have to preferably have elastic waist with no draw string. Shirts have to be hot water friendly and wrinkle proof. T-shirts have to be soft and not provoke too many questions as to make him uncomfortable if he can't answer. (This is my problem, not his). Every item had to be individually marked "Gary" or "G" if that is all that fits. Each sock, shirt, pants, robe, etc was labeled with a permanent marker that hopefully will not wash off after use.
I folded everything carefully, adding hangars where appropriate and labeling the box. What did I forget? I tried to realize that he is only 8 miles away and I am going to visit all the time and can take clothes as necessary.
I ordered the hamper for dirty clothes, replenished all the personal toiletries....the right shampoo, soap, toothpaste, toothbrush and deodorant. Labeled everything.
The picture frames came in today for the special photographs I had reprinted for his wall décor. I think they are perfect. I packed his favorite Bible plaque and added in "The Lord's Prayer". He still says it every night with prompting so hopefully, he will see it from his bed and maybe take the hint. I can't believe that after 30 years I will no longer be sleeping with my husband. I'm not referencing sex....I'm talking about rolling over in the night, touching his shoulder and telling him I love him. He always responds in kind. The thought of rolling over one night before I realize he is really away and trying to touch his hand or stroke his brow.....and he won't be there. My heart breaks.
Meanwhile, I have one of the second most important weeks of our year at the University. Tomorrow is a critical day in regard to preparing for our Reaffirmation. I have a caregiver coming at 7 am so I can get to work on time. He will not go to Adult Day Care tomorrow. His last day will be Wednesday. I stopped when I dropped him off this morning and told his social worker that he was transferring to Memory Care. She got big alligator tears in her eyes and did everything she could not to cry. She said, "We love having Gary, he is so sweet". I responded with the same emotion and she looked at me as if she could feel my despair. I managed not to cry....I had a conference video call a half hour later and could not risk the mascara and puffy eyes. There will be time for that after Gary is safely tucked into his new home.
This is all so unbelievable to me. It is unreal to many who haven't read the blog for a while and casually drop in to see how we are doing. I think Shock is a good word to describe it.
Tonight, as we sat on the sofa like every other night, he looked at me and said, "I want to lay down." I moved around the pillows, laid out the bed pad and made him comfortable. As I type, he is talking and reading the close captioning on our nightly dose of "MASH".
Then, there is the reality that my husband has a terminal illness that qualifies him for Hospice care. Really? Hospice? That means he will die. We all do......just not so soon. He may live two months, two years or more? No one knows what hell we might encounter before he joins his Lord. I just pray that he is spared pain....I have enough emotional pain for both of us.
Wednesday, June 22, 2016
How did the word "Hospice" creep into my life?
Today's events:
Worked a full day at my job.
Decided on a move-in date for Gary's Memory Care.
Worked with Heather to order and buy Furniture and bedding for Gary's new room.
Got the TB test done.
Did intake with Hospice Coordinator and signed Gary into Hospice benefits immediately.
Signed a DNR for Gary.
Tomorrow consists of doing an intake with the Nurse from the Memory Care unit to give us final costs.
I don't think any commentary is needed.
Thanks to all who have offered incredible assistance. You guys are wonderful.....you know who you are.
Prayers are appreciated.
"For Better or Worse" has taken on a whole new meaning.
Worked a full day at my job.
Decided on a move-in date for Gary's Memory Care.
Worked with Heather to order and buy Furniture and bedding for Gary's new room.
Got the TB test done.
Did intake with Hospice Coordinator and signed Gary into Hospice benefits immediately.
Signed a DNR for Gary.
Tomorrow consists of doing an intake with the Nurse from the Memory Care unit to give us final costs.
I don't think any commentary is needed.
Thanks to all who have offered incredible assistance. You guys are wonderful.....you know who you are.
Prayers are appreciated.
"For Better or Worse" has taken on a whole new meaning.
Sunday, June 19, 2016
Today started normally....
Today started normally....no wait, it was not normal. Gary had peed overnight in his diaper but had not gotten up nor did a "bed wash" (when Gary is aware that he needs to pee, but is not aware that he is wearing a diaper and pulls out his penis and pees freely around the diaper, thus saturating his clothes and the mattress pad) all night. We were able to sleep.
While I looked forward to sleeping past 7:00 am, he started counting and reading the Bible verse on the wall. He read this over and over and counted in between. I begged him to be quiet and when he finally did, then DIva needed to go out. That requires arising, adorning glasses, going down a large flight of steps, harnessing the dog and going out while waiting on her to complete her good morning Beagle sniff and pee. Then back up the stairs which is just enough to get the heart rate going, wake up and have no prayer of going back to sleep. So, I made coffee and brought it and our morning vitamins and pills to our bedside.
Even though I have done this thousands of times over the years, Gary could not figure out how to manipulate his body to sit up, scoot his butt back against the large pillow and be prepared to swallow pills and coffee. That process was tiring, at best.
Once he had his coffee, I settled in next to him with my phone to post various Father's Day and Adventure pictures of Gary on Facebook. A while later, we had finished our coffee and I got Gary up to take showers.
Again, hundreds of times we have gone through the same process. (Post Dementia). I wash him, shave him, rinse him and he gets out to towel off while I finish rinsing. Today was different.
Next to our shower is a recessed Jacuzzi which is never used due to it being rather unsafe to get in and out of....so it houses a large Orange HOme Depot 5 gallon bucket, a mop and a long handle shower scrubber. In slow motion, Gary put the towel over his head, stepped backward either due to leg tremors or just unbalance and fell in slow motion backward into the recessed tub, past the home depot bucket and hit his head squarely on the brass component sticking out the side of the tub. Naked and wet, his eyes crossed and I said, "Gary, are you hurt?" Well, it was more like, "GARY, ARE YOU HURT?"
For those who now him recently he repeats everything he hears multiple times. So, when I said, "Gary, are you hurt?" one would expect him to say back "Gary, are you hurt?" Today he said, "Yes, I am hurt." So buck naked, I knew I needed help and grabbed the closest robe, donned it to cover my nekkkked ass, and screaming for Joshua and Heather to come.
As the three of us managed to maneuver Gary into position and Joshua pulled him out of the tub and onto the now towel covered floor, I saw that he had a huge purple knot on this head where the brass knob gouged him. He had a large hematoma starting on this side where he had hit the bucket and the mop.
We got him dressed....I'm sorry to Joshua and especially Heather for the nudity but it had to be....
I dressed, we got him down the steps and into the car and off to the ER we went. We checked into our normal room in the ER and said hello to the same doctor who saw us last time. An Xray and CT scan later encountered no head injury and a hairline fracture on the 9th rib. At 12:30 we left the hospital.
Prior to being discharged, I had the opportunity to tell Gary that I could no longer take care of him and that he needed to move into a "Happy Place". When Gary was attempting to start the Circle of Life Holistic Healthcare Center a few years back, he nicknamed it the Happy Place. He did not seem to understand but we went by for a familiarization tour.
He was very hungry so focused more on the Nectarine and cookie I gave him in the lobby. We walked around and said hello to residents, looked at his room and met the man who will now be his roommate. Of course, he didn't know it but was very out of sorts partially because he was hungry and was probably in pain. The unit manager picked up the Happy Place analogy and referenced the place immediately as just that.....he smiled.
We left and picked up fast food, went home and ate. I arranged for Heather to watch him while I went out to the pharmacy to get his prescription of Narcotic pain killers. I went to the store and found out that the prescription had not been called in.....frustrated, I called the Er and was told that I had the prescription in the discharge paperwork due to DEA regulations. I spent some wasted time with the ER operator suggesting improved patient service by notifying the patient of said fact......yeah, deaf ears.
Anyway, I went back to the car to retrieve the prescription...sure enough, there is was. I took it back to the Pharmacy knowing that I would have to wait. ..ok.
Then, I was told the Pharmacist was at lunch and because of DEA regulations (those people have much control) that the PHarmacist had to verify they had the prescription and that she was at lunch. It would be at least 45 minutes before she returned from lunch and then .....they would text me that it was ready. No one cares that I have substitute caregivers watching my Demented husband at home who have no tolerance for urine issues....
So, I went home and waited. I ordered several photograph prints off the internet for the wall in Gary's new room. I chose to put up pictures of us, family but mostly our adventures over the years. For now, they are all pictures he will recognize.
The phone buzzed signifying the prescription was done and I ascended back down the hill to retrieve the all important drugs. The poor woman who had received my wrath after telling me I had to wait on the Pharmacist to return before greeted me with a smile and trepidation for what my mood my throw upon her. I picked up the prescription and noticed that she was coughing horribly and sounded a lot like I did when I had pneumonia. I caught her offguard when I told her that understood and asked, "Don't you just hate it when you are hacking up a lung and can't stop to the point of gagging and then you squirt pee?" She was absolutely shocked and then started giggling.... it was a closely guarded secret and we now had something in common. At least I still have my sense of humor.
At home, I gave Gary his pain killer and watched him blissfully sit on the sofa for hours. He never twitched, wiggled or moved. The power of drugs.
So, during all that, I called the Memory Care facility and indicated that we need to accelerate his admission. I cannot keep him safe at home. So while he lay like a zombie on the sofa, I began the painful paperwork. 34 pages in all.....I could not finish it all as I was having an important historical conversation with my granddaughter Samantha...our first real talk ever and it was priceless to me, but that is a story for another day.
Thank you Lord for letting my Gary walk away with minor injuries. I take it as a sign that I need to move more quickly, despite my professional obligations for the next week. I can do all things through Christ who strengthens me.
While I looked forward to sleeping past 7:00 am, he started counting and reading the Bible verse on the wall. He read this over and over and counted in between. I begged him to be quiet and when he finally did, then DIva needed to go out. That requires arising, adorning glasses, going down a large flight of steps, harnessing the dog and going out while waiting on her to complete her good morning Beagle sniff and pee. Then back up the stairs which is just enough to get the heart rate going, wake up and have no prayer of going back to sleep. So, I made coffee and brought it and our morning vitamins and pills to our bedside.
Even though I have done this thousands of times over the years, Gary could not figure out how to manipulate his body to sit up, scoot his butt back against the large pillow and be prepared to swallow pills and coffee. That process was tiring, at best.
Once he had his coffee, I settled in next to him with my phone to post various Father's Day and Adventure pictures of Gary on Facebook. A while later, we had finished our coffee and I got Gary up to take showers.
Again, hundreds of times we have gone through the same process. (Post Dementia). I wash him, shave him, rinse him and he gets out to towel off while I finish rinsing. Today was different.
Next to our shower is a recessed Jacuzzi which is never used due to it being rather unsafe to get in and out of....so it houses a large Orange HOme Depot 5 gallon bucket, a mop and a long handle shower scrubber. In slow motion, Gary put the towel over his head, stepped backward either due to leg tremors or just unbalance and fell in slow motion backward into the recessed tub, past the home depot bucket and hit his head squarely on the brass component sticking out the side of the tub. Naked and wet, his eyes crossed and I said, "Gary, are you hurt?" Well, it was more like, "GARY, ARE YOU HURT?"
For those who now him recently he repeats everything he hears multiple times. So, when I said, "Gary, are you hurt?" one would expect him to say back "Gary, are you hurt?" Today he said, "Yes, I am hurt." So buck naked, I knew I needed help and grabbed the closest robe, donned it to cover my nekkkked ass, and screaming for Joshua and Heather to come.
As the three of us managed to maneuver Gary into position and Joshua pulled him out of the tub and onto the now towel covered floor, I saw that he had a huge purple knot on this head where the brass knob gouged him. He had a large hematoma starting on this side where he had hit the bucket and the mop.
We got him dressed....I'm sorry to Joshua and especially Heather for the nudity but it had to be....
I dressed, we got him down the steps and into the car and off to the ER we went. We checked into our normal room in the ER and said hello to the same doctor who saw us last time. An Xray and CT scan later encountered no head injury and a hairline fracture on the 9th rib. At 12:30 we left the hospital.
Prior to being discharged, I had the opportunity to tell Gary that I could no longer take care of him and that he needed to move into a "Happy Place". When Gary was attempting to start the Circle of Life Holistic Healthcare Center a few years back, he nicknamed it the Happy Place. He did not seem to understand but we went by for a familiarization tour.
He was very hungry so focused more on the Nectarine and cookie I gave him in the lobby. We walked around and said hello to residents, looked at his room and met the man who will now be his roommate. Of course, he didn't know it but was very out of sorts partially because he was hungry and was probably in pain. The unit manager picked up the Happy Place analogy and referenced the place immediately as just that.....he smiled.
We left and picked up fast food, went home and ate. I arranged for Heather to watch him while I went out to the pharmacy to get his prescription of Narcotic pain killers. I went to the store and found out that the prescription had not been called in.....frustrated, I called the Er and was told that I had the prescription in the discharge paperwork due to DEA regulations. I spent some wasted time with the ER operator suggesting improved patient service by notifying the patient of said fact......yeah, deaf ears.
Anyway, I went back to the car to retrieve the prescription...sure enough, there is was. I took it back to the Pharmacy knowing that I would have to wait. ..ok.
Then, I was told the Pharmacist was at lunch and because of DEA regulations (those people have much control) that the PHarmacist had to verify they had the prescription and that she was at lunch. It would be at least 45 minutes before she returned from lunch and then .....they would text me that it was ready. No one cares that I have substitute caregivers watching my Demented husband at home who have no tolerance for urine issues....
So, I went home and waited. I ordered several photograph prints off the internet for the wall in Gary's new room. I chose to put up pictures of us, family but mostly our adventures over the years. For now, they are all pictures he will recognize.
The phone buzzed signifying the prescription was done and I ascended back down the hill to retrieve the all important drugs. The poor woman who had received my wrath after telling me I had to wait on the Pharmacist to return before greeted me with a smile and trepidation for what my mood my throw upon her. I picked up the prescription and noticed that she was coughing horribly and sounded a lot like I did when I had pneumonia. I caught her offguard when I told her that understood and asked, "Don't you just hate it when you are hacking up a lung and can't stop to the point of gagging and then you squirt pee?" She was absolutely shocked and then started giggling.... it was a closely guarded secret and we now had something in common. At least I still have my sense of humor.
At home, I gave Gary his pain killer and watched him blissfully sit on the sofa for hours. He never twitched, wiggled or moved. The power of drugs.
So, during all that, I called the Memory Care facility and indicated that we need to accelerate his admission. I cannot keep him safe at home. So while he lay like a zombie on the sofa, I began the painful paperwork. 34 pages in all.....I could not finish it all as I was having an important historical conversation with my granddaughter Samantha...our first real talk ever and it was priceless to me, but that is a story for another day.
Thank you Lord for letting my Gary walk away with minor injuries. I take it as a sign that I need to move more quickly, despite my professional obligations for the next week. I can do all things through Christ who strengthens me.
Saturday, June 18, 2016
I must carry on.....
In the middle of the night, after 4 trips to the bathroom (two successful, one near miss and one bed flood), I came to the realization that I am near done and that I have made the right decision for Gary and myself that he go to Memory Care.
I was tired after a long week and when he grabbed onto the posterbed with a vice-like grip to refuse to put on his diaper/underwear, I just begged him to go along with me. He looked through me and did not change his behavior. I felt the angst, tears and frustration well up in my chest and move to my eyes. At that point, I gave up. Not on the situation of the diaper install but gave up on the whole situation. I would not be able to do this much longer without doing harm to myself or striking him.
It is a point in life I never thought I would reach. I came close after my grandson's Graduation ceremony this week. I started to cry in front of our new pastor and then realized that there were hundreds of people around.....so, in perfect Ada style, I compartmentalized my emotion, pushed it down and moved on to leave. Its a technique that I developed years ago in stressful situations.
In this life situation, I cannot use this technique any longer as it will cause me irreparable harm. When Gary goes to Memory Care and I have more time to heal, I will seek a good counselor to assure that I am dealing with the grief, anger, fatigue, confusion and responsibility.
In reality, I lost my husband a long time ago. His body and part of his mind is still here. I must carry on without him.
I was tired after a long week and when he grabbed onto the posterbed with a vice-like grip to refuse to put on his diaper/underwear, I just begged him to go along with me. He looked through me and did not change his behavior. I felt the angst, tears and frustration well up in my chest and move to my eyes. At that point, I gave up. Not on the situation of the diaper install but gave up on the whole situation. I would not be able to do this much longer without doing harm to myself or striking him.
It is a point in life I never thought I would reach. I came close after my grandson's Graduation ceremony this week. I started to cry in front of our new pastor and then realized that there were hundreds of people around.....so, in perfect Ada style, I compartmentalized my emotion, pushed it down and moved on to leave. Its a technique that I developed years ago in stressful situations.
In this life situation, I cannot use this technique any longer as it will cause me irreparable harm. When Gary goes to Memory Care and I have more time to heal, I will seek a good counselor to assure that I am dealing with the grief, anger, fatigue, confusion and responsibility.
In reality, I lost my husband a long time ago. His body and part of his mind is still here. I must carry on without him.
Wednesday, June 15, 2016
What is a GOOD wife?
I am struggling with the concept of living apart from Gary. Did I say that I am struggling with living apart from my husband of 30 years? This is going to be way harder on me than him.
I have to think through getting him the right furniture, taking the right clothes, décor and every detail. I am so busy at work that I am struggling with time to make Doctors' appointments, calling Hospice, etc. The new facility says they can help with this......ok. I will try that route or it will not get done.
I have to do this to preserve myself, my sanity, my job and every other aspect of being a good wife. What is a good wife?
A loved one told me today that I will never recover from the guilt of making the decision to take him out of the home for 24 hour care. "Could I have done something else?" I can see that. However, that guilt will be less than something happening to him here because he may not have the right care. I can live with that a lot better.
Gary is my soulmate. I know and have lived "For better or worse" even though we actually never said those words. Instead, our vows said, "when we are separated, only by death, we will be self actualized that so that one can continue independently...." Wow, how powerful were my thoughts at age 22. I sometimes think that 22 year old was wiser than me at 53. Then again, maybe not.
Life has changed so significantly that I'm not sure how to react. I am preparing to live life without my husband. While I know I am more than capable, it is still terrifying.
Every day is a new adventure. Today, we had a substitute caregiver. When I walked her to the door, she turned and looked at me. She said, "You have a lot to deal with. I am sorry for you." I let him know that everyday is a new adventure.
Right now, I'm genuinely tired. After a full day at work and very little sleep last night, I am shaky. Lets hope Gary is just as tired so he sleeps rather than talks tonight. I don't want to have to say "Please be quiet! Please?" tonight....after all, it does No good.
Sleep well, my friends.
I have to think through getting him the right furniture, taking the right clothes, décor and every detail. I am so busy at work that I am struggling with time to make Doctors' appointments, calling Hospice, etc. The new facility says they can help with this......ok. I will try that route or it will not get done.
I have to do this to preserve myself, my sanity, my job and every other aspect of being a good wife. What is a good wife?
A loved one told me today that I will never recover from the guilt of making the decision to take him out of the home for 24 hour care. "Could I have done something else?" I can see that. However, that guilt will be less than something happening to him here because he may not have the right care. I can live with that a lot better.
Gary is my soulmate. I know and have lived "For better or worse" even though we actually never said those words. Instead, our vows said, "when we are separated, only by death, we will be self actualized that so that one can continue independently...." Wow, how powerful were my thoughts at age 22. I sometimes think that 22 year old was wiser than me at 53. Then again, maybe not.
Life has changed so significantly that I'm not sure how to react. I am preparing to live life without my husband. While I know I am more than capable, it is still terrifying.
Every day is a new adventure. Today, we had a substitute caregiver. When I walked her to the door, she turned and looked at me. She said, "You have a lot to deal with. I am sorry for you." I let him know that everyday is a new adventure.
Right now, I'm genuinely tired. After a full day at work and very little sleep last night, I am shaky. Lets hope Gary is just as tired so he sleeps rather than talks tonight. I don't want to have to say "Please be quiet! Please?" tonight....after all, it does No good.
Sleep well, my friends.
Monday, June 13, 2016
"I miss you like the Dickens!"
The Convoy is an organization that travels the country feeding the poor, washing feet, giving haircuts, clothes and spiritual outreach. We did this together once and Gary went one year without me while I was in bed with a fever.
He is still sweet and loving, just with a different affect. When I returned home after a 4 day respite, he seemed to know I had been missing and perked up when I kissed him on the head. I was glad that he still connects with me. It is a bittersweet recognition.
I had made the decision to admit him to Memory Care in July as I need the time to prepare everything. My heart is broken.
This morning, I was getting him ready for his day at Day Care. His legs started shaking like a few weeks ago when we thought he was having a seizure. I managed to get him to the bed to lean against it while I tried to dress him. His legs were so weak that he kept sliding down the side of the bed. It was all I could do to handle him from falling on the floor. I knew that if he sat down, his muscles would recover and he would be "fine". I managed to get him to the end of the bed to a bench. He sat there while I went through the normal plan of saying, "right leg. Pick up your right leg. Left leg. Pick up your left leg." I got his jeans to his waist but could not get him to stand to secure the waistband. I let him sit there as long as I could before needing to continue dressing him.
After dressing myself and wondering, "What do I do now? I can't call 911 as this is not an emergency. How will I get him downstairs if this continues?" Due to recovering from Pneumonia and the physical exertion, I was exhausted. I kept repeating "I can do all things through Christ who strengthens me." I said it at least 10 times.
Gary stood with my help, had stopped shaking and as we moved toward the stairwell, he said to me, "I miss you like the Dickens." The heartfelt statement threw me. I responded, "Why honey, I'm right here?" He said okay and we moved downstairs....slowly but safely with one hand on the rail and one hand on my shoulder.
I thought about his statement several times in the day. Did he mean to say it in past tense and that he had missed me? Or in that moment, did he not realize I was there even though he was talking to me? What will he say when he is at Memory Care and talks to me and I'm not there? That is the heartbreaking part for me. He is my other half even when his half is not functioning well.
I'm sure God will protect both of us and bring healing for the grief. I think of the people he has helped over the years. As Christians, we know we are saved by Grace and not by deeds but I am hoping that while here on Earth he can cash in some of those good deeds for peace and tranquility here. Heaven is handled for him. He loves the Lord and we still recite the Lords' Prayer most nights. He still knows it and recites it.
Thank you Lord for every day.
Friday, June 10, 2016
Gary Gives the Answer
Today, I have been very quiet. I'm waiting to hear God's advise. Instead of hearing some blaring voice, I am getting subtle clues.
As I was lying on the massage table today, I had the thought that I need to talk to an old friend....a friend who has know us since 1989 and better than anyone else. So, I did. I called him and caught him completely off guard. This is a friend who does not follow the blog and is not on Facebook. I knew he did not know the latest. I caught him up and explained our current plight. What a horrible position to put a dear friend in but I did it. I expressed that putting him on the spot was unfair but that I am living in an unfair world and I just needed his valuable input.
I asked him what he thought Gary would want. He answered exactly what I thought he would if I had been neutral all this time. Gary would not want to be a burden and do anything to cause me pain or trouble.
In reality, I thought about Gary's master plan to build his "Circle of Life Holistic Health Care Center". A few years back he was planning for and raising money to build a Health Care Center for victims of Dementia and Alzheimer's. He wanted a place where patients would consider it a home while gaining expert care and having an inviting place for the families to want to come and visit.
Gary gave me the answer waaay back then. He wanted a place to go so that everyone would have the best possible situation. While he did not have the brainpower to finish the project and we aborted the project, he did know that he was headed there and wanted the best for all concerned. Someday I would like to finish his beloved project.
The places that I am investigating are about 1/2 of the things that he wanted. They don't have bowling alleys, organic gardens and multiple religious centers. But they do have good care, low caregiver ratios and access to medical care. Gary gave me the answer.
Now, I need to do the best thing a wife can do and find the RIGHT place for him. God will provide the resources and money. He has led the plan so far. Why would he let me down now?
As I was lying on the massage table today, I had the thought that I need to talk to an old friend....a friend who has know us since 1989 and better than anyone else. So, I did. I called him and caught him completely off guard. This is a friend who does not follow the blog and is not on Facebook. I knew he did not know the latest. I caught him up and explained our current plight. What a horrible position to put a dear friend in but I did it. I expressed that putting him on the spot was unfair but that I am living in an unfair world and I just needed his valuable input.
I asked him what he thought Gary would want. He answered exactly what I thought he would if I had been neutral all this time. Gary would not want to be a burden and do anything to cause me pain or trouble.
In reality, I thought about Gary's master plan to build his "Circle of Life Holistic Health Care Center". A few years back he was planning for and raising money to build a Health Care Center for victims of Dementia and Alzheimer's. He wanted a place where patients would consider it a home while gaining expert care and having an inviting place for the families to want to come and visit.
Gary gave me the answer waaay back then. He wanted a place to go so that everyone would have the best possible situation. While he did not have the brainpower to finish the project and we aborted the project, he did know that he was headed there and wanted the best for all concerned. Someday I would like to finish his beloved project.
The places that I am investigating are about 1/2 of the things that he wanted. They don't have bowling alleys, organic gardens and multiple religious centers. But they do have good care, low caregiver ratios and access to medical care. Gary gave me the answer.
Now, I need to do the best thing a wife can do and find the RIGHT place for him. God will provide the resources and money. He has led the plan so far. Why would he let me down now?
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