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.
Subscribe to:
Posts (Atom)