It is Sunday. This weekend has consisted of a tremendous amount of organization, cleaning the garage, many loads of laundry (normal and incontinence related), cooking meals and straightening our "home office". Gary and I just finished a great meal of pineapple/jalapeno pork, red and purple jasmine rice cooked in Mango juice and garlic sautéed kale and bok choy. It was a delicious meal and Gary ate every bite....quickly. The fact that he ate it all in less than an hour was an indication that he liked it.
All this activity and the only emotion I can identify is pure loneliness. Gary is just a few feet away in the massage chair, Diva is begging for a post-dinner treat and Heather and Xander are in their living room......
Have you ever been all alone in a house full of people? What is missing here.....Gary's real brain. He no longer really looks at me. He still knows who I am but he looks past me unless I hold his chin and force him to look at my eyes. It is not the same connection. Just like I said, it is forced. Its a horrible realization that your husband is somewhat gone.
So, since he is still here and I feel so lonely, I can't help but wonder what it will feel like when the body is no longer here either? He is healthy other than the brain so it could be years. I am thankful for his other health. For widows and widowers, I wish them peace. The agony of their death must be of the worst kind of agony. My loneliness and agony is only half....our dog Diva is so sensitive that she is feeling my pain now....she came and sat next to me as I type and put her head on my wrist. So sweet.
Of course, its the same wrist that had a trash can lid slammed on it yesterday by the wind when I was cleaning the garage.....it really hurts but her head trying to comfort me is so very gentle. She just switched to licking my hand instead.
God just keeps giving me breaks. I don't know how or why I deserve the kindness. So, I will stop typing and enjoy my loneliness dissipating.
Showing posts with label Family. Show all posts
Showing posts with label Family. Show all posts
Sunday, April 24, 2016
Tuesday, March 8, 2016
Loving my Husband....
The things that I love about my husband are numerous:
He is very sweet and concerned about my feelings most of the time. He feels my pain and says he is sorry even if he doesn't understand the simplest of reasons.
He loves me and recognizes me.
He loves hot coffee in bed in the morning.
He still sings "I Left My Heart in San Francisco" when it comes on in the car....
He still loves to "play drums" on everything he finds....except for his drum set.
He loves our dog and is still sensitive when she is scared from a storm.
He knows his grandson's nickname is Xander and is concerned about his welfare.
He has given me permission to make the everyday decisions I have to make because he can't help me anymore.
He is still polite to others.
He still knows all his nicknames and sometimes calls me by mine.
He is not the full man I married but I love him till Death Do Us Part....no matter what that means.....
He is very sweet and concerned about my feelings most of the time. He feels my pain and says he is sorry even if he doesn't understand the simplest of reasons.
He loves me and recognizes me.
He loves hot coffee in bed in the morning.
He still sings "I Left My Heart in San Francisco" when it comes on in the car....
He still loves to "play drums" on everything he finds....except for his drum set.
He loves our dog and is still sensitive when she is scared from a storm.
He knows his grandson's nickname is Xander and is concerned about his welfare.
He has given me permission to make the everyday decisions I have to make because he can't help me anymore.
He is still polite to others.
He still knows all his nicknames and sometimes calls me by mine.
He is not the full man I married but I love him till Death Do Us Part....no matter what that means.....
Sunday, February 21, 2016
The Split Personality Required to Be an Executive AND a Caregiver
Ever since I met Gary in 1985, I have been focused on my career. We started together selling campground memberships/timeshare and later, oil wells. We were incredibly successful with Network Marketing. I worked as an Admissions Advisor, Director of Admissions, Corporate Director of Admissions, Associate Director, Campus President, Provost and now Executive Director. I like to think that all were promotions or a better place.
Until about seven years ago, Gary was my husband, mentor and teacher. He taught me about sales, reinforced integrity, and taught me how to think critically in every situation. I am a free spirit by nature so learning the skill of using my left brain was often tough. He hung in there and eventually, I became an Executive. While he was proud of me, he also hated that in the latter years I had surpassed his success.
When it comes to Gary, I am not sure what came first, his failure or his Dementia. He started projects that were never finished. Was it boredom or was he hiding a weakness in his thinking?
I remember vividly coming home from my former College one day when I was facing a particularly difficult day of downsizing. We were so close as a work family that it was devastating to know that I had to ask someone to leave. I asked for advice from Gary. He looked me squarely in the eye and said, "Honey, I don't know what to tell you. I have nothing left to teach you.....you learned all I have to teach and you are better than me."
On one hand I was thrilled and at the same time crushed. While I watched him pour himself a triple whiskey and coke, I made a decision. He often begged me to quit my job and stay home to work with him. I decided that no matter what, I had to continue with my success because someday I may need to be the strong one. In retrospect, my wisdom then surpassed my situation. I had no concept then of what I would be facing with his dementia that was to come.
If you have never had to decide between work and family, I hope you never do. I was challenged with learning to balance the 50+ hour job and taking care of things at home. Even when Gary was still working, I spent weekends managing the books, troubleshooting the computers, marketing the current product or designing a campaign of some sort. We worked hard and we played hard.
I remember many nights coming home from work after a long day and spending 5-6 more hours in the office. We made a lot of money. We lost just as much as Gary started failing and took over the business as I focused on my job.
Before we moved from Elk Grove, there were times when I would have a crisis at work and would call him to say I would be late. The situation was always the same. I would ask if he could feed Diva (our beagle) and start dinner until I got home. Many times he did and many times I would find him at the computer having not eaten nor started anything.
When our accountant told us to short sale our house due to the price being nearly $300k under what we owed, I really started seeing his problems. He could not make decisions without significant input. He had hired a team to raise enough money to build a Dementia Care facility. He would drive around Elk Grove to find an appropriate tract and call the same broker he had called three times before never remembering that he had.
All the while, I was running a college and doing the best I could. Is that an excuse? Maybe, maybe not.
Now, seven years later, Gary is never to be alone for fear of him falling, burning the house with the stove or walking out to never return. He goes to day care five days per week and must have a caregiver at all times until I come home.
Due to my years of compartmentalizing home and work, I can focus on work while at work. In fact, having to escape thinking of him has made me a stronger Director. I immerse myself in Profit and Loss Statements, team building and providing a quality education to the near 1600+ students who are working on their B .S. degrees.
While at home, I must focus on him. I must start to plan for the future. How will I afford the long term care that he is going to need? I need to remember to tell the agency what days I will need someone late because I have a ceremony or dinner, etc. I cannot afford to miss a beat in either role.
Sometimes it is like having a split personality. I don't have that affliction but could function well if I needed to do so.
Until about seven years ago, Gary was my husband, mentor and teacher. He taught me about sales, reinforced integrity, and taught me how to think critically in every situation. I am a free spirit by nature so learning the skill of using my left brain was often tough. He hung in there and eventually, I became an Executive. While he was proud of me, he also hated that in the latter years I had surpassed his success.
When it comes to Gary, I am not sure what came first, his failure or his Dementia. He started projects that were never finished. Was it boredom or was he hiding a weakness in his thinking?
I remember vividly coming home from my former College one day when I was facing a particularly difficult day of downsizing. We were so close as a work family that it was devastating to know that I had to ask someone to leave. I asked for advice from Gary. He looked me squarely in the eye and said, "Honey, I don't know what to tell you. I have nothing left to teach you.....you learned all I have to teach and you are better than me."
On one hand I was thrilled and at the same time crushed. While I watched him pour himself a triple whiskey and coke, I made a decision. He often begged me to quit my job and stay home to work with him. I decided that no matter what, I had to continue with my success because someday I may need to be the strong one. In retrospect, my wisdom then surpassed my situation. I had no concept then of what I would be facing with his dementia that was to come.
If you have never had to decide between work and family, I hope you never do. I was challenged with learning to balance the 50+ hour job and taking care of things at home. Even when Gary was still working, I spent weekends managing the books, troubleshooting the computers, marketing the current product or designing a campaign of some sort. We worked hard and we played hard.
I remember many nights coming home from work after a long day and spending 5-6 more hours in the office. We made a lot of money. We lost just as much as Gary started failing and took over the business as I focused on my job.
Before we moved from Elk Grove, there were times when I would have a crisis at work and would call him to say I would be late. The situation was always the same. I would ask if he could feed Diva (our beagle) and start dinner until I got home. Many times he did and many times I would find him at the computer having not eaten nor started anything.
When our accountant told us to short sale our house due to the price being nearly $300k under what we owed, I really started seeing his problems. He could not make decisions without significant input. He had hired a team to raise enough money to build a Dementia Care facility. He would drive around Elk Grove to find an appropriate tract and call the same broker he had called three times before never remembering that he had.
All the while, I was running a college and doing the best I could. Is that an excuse? Maybe, maybe not.
Now, seven years later, Gary is never to be alone for fear of him falling, burning the house with the stove or walking out to never return. He goes to day care five days per week and must have a caregiver at all times until I come home.
Due to my years of compartmentalizing home and work, I can focus on work while at work. In fact, having to escape thinking of him has made me a stronger Director. I immerse myself in Profit and Loss Statements, team building and providing a quality education to the near 1600+ students who are working on their B .S. degrees.
While at home, I must focus on him. I must start to plan for the future. How will I afford the long term care that he is going to need? I need to remember to tell the agency what days I will need someone late because I have a ceremony or dinner, etc. I cannot afford to miss a beat in either role.
Sometimes it is like having a split personality. I don't have that affliction but could function well if I needed to do so.
Tuesday, November 24, 2015
The Case of the Haunted Jacuzzi
My cell phone rang late in the day. I saw Heather's picture and knew something was wrong as she only calls me in an emergency....or something REALLY strange. I'll give you one guess which case this was....right, REALLY strange.
Heather: "Do you have a Jacuzzi tub in your bathroom? How do I turn it off? Dad turned it on somehow and I can't turn it off. It sounds like a truck idling from downstairs but I came to check on Dad and it is the tub! In the background I could hear Gary going on about some totally different subject. While humorous, I had to focus.
I asked several questions, like did you turn off the button? There was only a knob sticking up and that didn't work. She texted me a picture of what looked more like an air duct usually found on the side of the tub. We have not used the Jacuzzi since we moved in so I was not sure. I told her to fill the tub with water so the motor would not burn up since she said it had been running for quite some time.
I then suggested she go the breaker box, find the one marked tub or Jacuzzi and turn it off. Gary was still in the toilet stall so she left him, went down all the stairs, grabbed Xander's toy flashlight (it worked) and headed for the breaker. Vioila! She found the right switch and turned it to "off". Or so we thought. She went back upstairs to check on Gary (no gym membership required in this house full of stairs!) and found the tub still shooting water to and fro. I could hear it roar in the background.
I asked if the water was above the jets. She replied affirmatively. She had to leave to get Xander from day care and I was too far away to do anything. She assured me there would be no flood so I decided it was ok until I got home over an hour away.
When I arrived home, I put on a pair of shorts to get in the tub since the spigots and the drain are on the far end of the tub (pretty stupid design). I also tried the button which looked nothing like a Jacuzzi button I had ever seen. Water had started to splash all over that side of the bathroom. Since she had followed my initial directions and turned the brass button one way and then the other, the air was on full spray and doing its job.
There was no button that looked anything like a switch. WTF? If we couldn't find the button to turn it off, how did Gary turn it on?
Then, I remembered a silver switch on the wall behind Gary's bathrobe. Remember when you were a kid and you went to a hotel that had a heater in the ceiling in the bathroom that had a timer switch. Yes, one of those. All this time, I thought it was a heater switch that we never needed. It was stuck on zero. Or at least there was a fine line between zero and sixty minutes. He had turned the knob all the way around, it turned on the Jacuzzi and got stuck in an on position. I turned it off the a moment of peaceful quiet after the raging waters from moments before!
So, how did it not turn off when Heather cut the power? So, I too used the toy flashlight (three other flashlights in the emergency area did not work) and headed for the breaker. It was off. Again, there is no explanation for how the Jacuzzi continued to run with the power "off" but it did. Crazy house.
So, after a day of audits and regular work, I mopped the floor while explaining the answers to all of Xander's questions. "Why did you open the shower? What is a sponge? Why is there water everywhere? What is that thing in your hand called? Why is it called a mop? Why did Papa turn on the bathtub? Why are you standing in the bathtub with your clothes on? Why are you letting the water out?" And.....etc.
So, as per normal, rather than trust that Gary will remember not to use that knob again when he is trying to turn on the lights...I got out the duct tape and covered the switch so it cannot be used.
I then remembered that I needed to double check that Gary's CLUB remembered to have him wear his jacket home (that is another topic for another day). Of course, Heather reported that he did not wear a jacket home. I was close to blowing a gasket after spending almost a half hour prior to work this morning watching a social worker at day care run around looking for Gary's clothes from when he had an accident and came home in someone's spare clothes.
Tomorrow morning, when I take him again, I will need to go in, find the social worker and make a real stink. Why is Gary the only one who comes home without a jacket? Or is he? Perhaps I have uncovered a significant problem there?
I have been known, on occasion, to be very vocal. I should be plenty warmed up by morning....look out world!
Heather: "Do you have a Jacuzzi tub in your bathroom? How do I turn it off? Dad turned it on somehow and I can't turn it off. It sounds like a truck idling from downstairs but I came to check on Dad and it is the tub! In the background I could hear Gary going on about some totally different subject. While humorous, I had to focus.
I asked several questions, like did you turn off the button? There was only a knob sticking up and that didn't work. She texted me a picture of what looked more like an air duct usually found on the side of the tub. We have not used the Jacuzzi since we moved in so I was not sure. I told her to fill the tub with water so the motor would not burn up since she said it had been running for quite some time.
I then suggested she go the breaker box, find the one marked tub or Jacuzzi and turn it off. Gary was still in the toilet stall so she left him, went down all the stairs, grabbed Xander's toy flashlight (it worked) and headed for the breaker. Vioila! She found the right switch and turned it to "off". Or so we thought. She went back upstairs to check on Gary (no gym membership required in this house full of stairs!) and found the tub still shooting water to and fro. I could hear it roar in the background.
I asked if the water was above the jets. She replied affirmatively. She had to leave to get Xander from day care and I was too far away to do anything. She assured me there would be no flood so I decided it was ok until I got home over an hour away.
When I arrived home, I put on a pair of shorts to get in the tub since the spigots and the drain are on the far end of the tub (pretty stupid design). I also tried the button which looked nothing like a Jacuzzi button I had ever seen. Water had started to splash all over that side of the bathroom. Since she had followed my initial directions and turned the brass button one way and then the other, the air was on full spray and doing its job.
There was no button that looked anything like a switch. WTF? If we couldn't find the button to turn it off, how did Gary turn it on?
Then, I remembered a silver switch on the wall behind Gary's bathrobe. Remember when you were a kid and you went to a hotel that had a heater in the ceiling in the bathroom that had a timer switch. Yes, one of those. All this time, I thought it was a heater switch that we never needed. It was stuck on zero. Or at least there was a fine line between zero and sixty minutes. He had turned the knob all the way around, it turned on the Jacuzzi and got stuck in an on position. I turned it off the a moment of peaceful quiet after the raging waters from moments before!
So, how did it not turn off when Heather cut the power? So, I too used the toy flashlight (three other flashlights in the emergency area did not work) and headed for the breaker. It was off. Again, there is no explanation for how the Jacuzzi continued to run with the power "off" but it did. Crazy house.
So, after a day of audits and regular work, I mopped the floor while explaining the answers to all of Xander's questions. "Why did you open the shower? What is a sponge? Why is there water everywhere? What is that thing in your hand called? Why is it called a mop? Why did Papa turn on the bathtub? Why are you standing in the bathtub with your clothes on? Why are you letting the water out?" And.....etc.
So, as per normal, rather than trust that Gary will remember not to use that knob again when he is trying to turn on the lights...I got out the duct tape and covered the switch so it cannot be used.
I then remembered that I needed to double check that Gary's CLUB remembered to have him wear his jacket home (that is another topic for another day). Of course, Heather reported that he did not wear a jacket home. I was close to blowing a gasket after spending almost a half hour prior to work this morning watching a social worker at day care run around looking for Gary's clothes from when he had an accident and came home in someone's spare clothes.
Tomorrow morning, when I take him again, I will need to go in, find the social worker and make a real stink. Why is Gary the only one who comes home without a jacket? Or is he? Perhaps I have uncovered a significant problem there?
I have been known, on occasion, to be very vocal. I should be plenty warmed up by morning....look out world!
Saturday, November 21, 2015
Public Embarrasment
Sometimes I feel punished. I know its a mindset but it is difficult to not get bitter. Anger is certainly an emotion that enters my heart near daily. Why do I have to change my patterns, errands and wishes because Gary has dementia? If I chose to get a "sitter" all the time, or impose on Heather more, I could have more freedom. He is not so far along that I feel that is right either. So, I'm stuck somewhere in the middle of this already in-between comparison to Hades.
Last Sunday, I took Gary to church. It is a loving group where we have worshipped before since moving to Anaheim. Because of Gary's constant repetition of many words he hears and due to his verbal processing (often loudly) of most thoughts, I am always on edge waiting for what jewel he may drop on humanity next. Sure enough, a few minutes into the Pastor's sermon, Gary stood up. I pulled on his jacket to get him to sit as I knew whatever he was processing was paragraphs behind the poor man's sermon. I managed to get him to sit down without too much noise or shuffle. Then, he started reading aloud the bulletin which I gave him to hopefully keep him quiet. I tried to quiet him with the ever-dependable "shhh". He merely repeated the noise several times growing louder with my frustration.
I could tell the folks in front of us were a little un-nerved. How to handle? When the Pastor asked for folks to stand up who were ready to commit their life to Christ, Gary took the opportunity once again to stand. Well, who am I to keep the man from re-giving his life to Jesus....even though he was probably hearing some other message.
The rest of the service was uncomfortable for me. Of course, the anger started. Is it lack of control that invokes the anger? Is it embarrassment? Yes.
Then today, he really needed a pedicure. I can't effectively take care of his feet so I choose to have him professionally soaked, massaged and clipped every so often. I haven't found the right person who completely understands his behavior, needs and quirks. Today, we came close. The lady doing his manicure (I just asked for a pedicure and he decided LOUDLY, that he too needed a manicure) was very sweet and spoke English in a tongue he could clearly understand. She told him that we were treating him special because his birthday was this month. He treated the entire audience within the salon's hearing range with his signature "Yeah, yeah, yeah!" and "That's more better than good."
The other discomfort for me is not knowing how loud he will be or what he might say. (for example, he told the woman she had nice breasts and asked if he could touch them). I apologized and told him his behavior was inappropriate and that he needed to stop and that certainly he could NOT touch her. She understood, laughed and said she understood. I watched her body language for several minutes and she really did seem to accept his mental disorder. There was a woman around my age who was there with her adult daughters. She sat next to him and talked to him while my procedure was being finished. She asked how long he had dementia and that she had a friend in my "situation". All I could say was that I was sorry for her and that I wish the disease on no one. I gave her the blog address for her to share. Perhaps it will help someone else. Perhaps it is a hell that they would better cope with if they don't know what is coming. I'm not sure that I want to see the future.
There seemed to be a sigh of relief when we left. All employees were tipped very well. I will have to consider whether I go back to the same salon or find a new one. Do they want our business?
So, one should be able to see why I am beginning to think that I can't take him anywhere. I guess I will have to start shelling out additional dollars for a sitter, even for routine errands.
I will have him from Wednesday afternoon until Monday of next week due to the Holiday. Heather and Xander are escaping for the weekend. Escaping. Yes, I said "escaping". Bless them both. They put up with so much.
Pray for us all. Sometimes being a part of a family and having committed to a relationship is hard. I will not let him down.
Last Sunday, I took Gary to church. It is a loving group where we have worshipped before since moving to Anaheim. Because of Gary's constant repetition of many words he hears and due to his verbal processing (often loudly) of most thoughts, I am always on edge waiting for what jewel he may drop on humanity next. Sure enough, a few minutes into the Pastor's sermon, Gary stood up. I pulled on his jacket to get him to sit as I knew whatever he was processing was paragraphs behind the poor man's sermon. I managed to get him to sit down without too much noise or shuffle. Then, he started reading aloud the bulletin which I gave him to hopefully keep him quiet. I tried to quiet him with the ever-dependable "shhh". He merely repeated the noise several times growing louder with my frustration.
I could tell the folks in front of us were a little un-nerved. How to handle? When the Pastor asked for folks to stand up who were ready to commit their life to Christ, Gary took the opportunity once again to stand. Well, who am I to keep the man from re-giving his life to Jesus....even though he was probably hearing some other message.
The rest of the service was uncomfortable for me. Of course, the anger started. Is it lack of control that invokes the anger? Is it embarrassment? Yes.
Then today, he really needed a pedicure. I can't effectively take care of his feet so I choose to have him professionally soaked, massaged and clipped every so often. I haven't found the right person who completely understands his behavior, needs and quirks. Today, we came close. The lady doing his manicure (I just asked for a pedicure and he decided LOUDLY, that he too needed a manicure) was very sweet and spoke English in a tongue he could clearly understand. She told him that we were treating him special because his birthday was this month. He treated the entire audience within the salon's hearing range with his signature "Yeah, yeah, yeah!" and "That's more better than good."
The other discomfort for me is not knowing how loud he will be or what he might say. (for example, he told the woman she had nice breasts and asked if he could touch them). I apologized and told him his behavior was inappropriate and that he needed to stop and that certainly he could NOT touch her. She understood, laughed and said she understood. I watched her body language for several minutes and she really did seem to accept his mental disorder. There was a woman around my age who was there with her adult daughters. She sat next to him and talked to him while my procedure was being finished. She asked how long he had dementia and that she had a friend in my "situation". All I could say was that I was sorry for her and that I wish the disease on no one. I gave her the blog address for her to share. Perhaps it will help someone else. Perhaps it is a hell that they would better cope with if they don't know what is coming. I'm not sure that I want to see the future.
There seemed to be a sigh of relief when we left. All employees were tipped very well. I will have to consider whether I go back to the same salon or find a new one. Do they want our business?
So, one should be able to see why I am beginning to think that I can't take him anywhere. I guess I will have to start shelling out additional dollars for a sitter, even for routine errands.
I will have him from Wednesday afternoon until Monday of next week due to the Holiday. Heather and Xander are escaping for the weekend. Escaping. Yes, I said "escaping". Bless them both. They put up with so much.
Pray for us all. Sometimes being a part of a family and having committed to a relationship is hard. I will not let him down.
Sunday, March 22, 2015
Blended family, shared space!
Gary is going through a period where he is again confused about where we live and he thinks we are visiting the home we have lived in for four months. Our daughter Heather and her three year old son moved in with us a little over a week ago and I think the new energies and shared space has confused him.
It is not a disturbing confusion for him, but certainly not clarity. We have separate "living" areas so both families can watch independent television and have separate activities or be together if we wish. When we are separate, he seems more at ease and I believe he will adjust soon. The only barrier to clarity sooner is that he and I are going to Yosemite at the end of the week for a few much-needed get away days. (Well, I need them!) This trip may confuse him more, but Yosemite has such a healing nature!
We all went to church this morning. I love watching Gary worship and sing. He is more like his old self then. I somehow sense that when he is that close to God that the broken brain doesn't matter so much. He knows he is worshipping and the Lord knows he is loving him. Its a precious time!
My patience with him has been shorter than normal lately. Could be the changes at work, changes at home or Heaven forbid, hormones! When Gary gets on my nerves, I try so hard to stay calm and let the tension go. While attempting to pack this afternoon, he got very overwhelmed and started asking 40,000 questions. I could not answer them quick enough nor satisfy his need to know the intricacies of the smallest detail of hiking boots, poles and luggage. I was in the closet and he was lying on the bed....apparently we were quite loud as I heard Heather come in the bedroom to soothe the situation. She suggested he go and sit in the massage chair. It diffused the whole nervous, aggravating situation.
I believe for so many reasons, this will work out! Thank you, our precious daughter, for changing your life for us.
It is not a disturbing confusion for him, but certainly not clarity. We have separate "living" areas so both families can watch independent television and have separate activities or be together if we wish. When we are separate, he seems more at ease and I believe he will adjust soon. The only barrier to clarity sooner is that he and I are going to Yosemite at the end of the week for a few much-needed get away days. (Well, I need them!) This trip may confuse him more, but Yosemite has such a healing nature!
We all went to church this morning. I love watching Gary worship and sing. He is more like his old self then. I somehow sense that when he is that close to God that the broken brain doesn't matter so much. He knows he is worshipping and the Lord knows he is loving him. Its a precious time!
My patience with him has been shorter than normal lately. Could be the changes at work, changes at home or Heaven forbid, hormones! When Gary gets on my nerves, I try so hard to stay calm and let the tension go. While attempting to pack this afternoon, he got very overwhelmed and started asking 40,000 questions. I could not answer them quick enough nor satisfy his need to know the intricacies of the smallest detail of hiking boots, poles and luggage. I was in the closet and he was lying on the bed....apparently we were quite loud as I heard Heather come in the bedroom to soothe the situation. She suggested he go and sit in the massage chair. It diffused the whole nervous, aggravating situation.
I believe for so many reasons, this will work out! Thank you, our precious daughter, for changing your life for us.
Friday, January 30, 2015
"What do you mean your brother died? Why is that?"
The minute I heard that my brother had died unexpectedly, my
first thought was that I knew I had to go from our home in California to Texas
for the funeral. Second thought, do I
take Gary or not? The third thought was
“Call Heather”. I instantly knew that if
Heather could come for a few days and stay with Gary that my trip would be
smoother, more healing, less stressful and much easier on him.
I called Heather and explained what had happened. Her daughter is getting married in a few
weeks and I hoped the timing was exceptional so that she would miss nothing
related to the events but that she could assist. Without hesitation, she said that she would
come.
I had been at the office when I got the news and after a few
necessary phone calls, I called Gary.
Pre-dementia, he would have been my first call. He would have soothed my soul, started making
travel arrangements for us both, arranged for the dog to be boarded and done whatever
necessary to get us ready for a trip surrounding so much tragedy. NOT this time. I knew, for the most part, I was on my own.
My call to Gary was very simple, unemotional (that
accomplishes nothing but frustration for him) and fact based. “Gary, I just received some bad news. My brother, Mike died this afternoon. We don’t know why but his wife found him
lying beside his exercise bike dead. I
will have to go to Texas. At this point,
I’m not sure when, but Heather will come stay with you and I will go by
myself.” His response was a heart-felt
“Oh, my!” followed by some basic questions.
Gone is the heart and brain that before the dementia would have wanted
to comfort and protect me. Somehow,
faintly, I knew how my sister in law was going to feel in the coming days,
weeks and years. The husband is just not
there anymore.
I swallowed my selfishness and was thankful that Gary was
alive and remembers me. Upon getting
home that evening, I asked if he remembered our call that afternoon and what I
had shared. He did not. “What do you mean your brother died? Why is that?”
Throughout the evening, I tempered my emotion and repeatedly reminded
him of my grief and angst over the coming trip.
I lost count of how many times he asked why I was so upset. I bordered on helplessness and
infuriation. I did not really cry until
I spoke with my niece, and ultimately, my brother’s widow. I held together until I hung up the
phone. Then, despite Gary, I sobbed.
That was really the only time during the whole experience that real
tears flowed. The rest of the trip, I
was pretty numb.
In a couple of days, Heather came and I left for Texas. It was hard preparing, running errands,
packing and shopping with Gary constantly needing reminders of the “why”. I got through it.
During the days following, I visited with family, extended
family, friends and yes, the funeral home to see my brother. Heart-wrenching. I shared a room with my Dad and we were apart
very little. He is really an angel sent
to earth. He loved me, listened and
provided his quiet, ever-present unconditional love. I knew there was no comfort that I could
provide for him. Death hurts those left
behind. Period.
Each day started with over-the-night voicemails from Gary
leaving messages asking about where I was, when I was coming home and various
other things that really let me know that he had not retained the information
of the death. Many calls during the day
were received. Every night consisted of calls telling him the same
information. Finally, I grew numb over
him. I lost my temper a few times. I
even lost my temper with Heather when she reached out for me to call Gary as he
was misbehaving. It was right in the
middle of our family dinner after leaving the funeral. I was thankful that I don’t type well in
text. I was angry and curt. I will need to apologize to her. After all, she is human, too!
During my absence, Heather was a champ. Despite having
fallen in the bathroom, hitting her head and having a severe headache for three
days, she took great care of Gary. Her
patience is wonderful. She views the
task as taking care of two three year olds….only one of them is 66. Gary is the same age as my brother who just
had the experience of his heart stopping.
No heart attack….just stopped due to heart disease.
So, I am writing this as I fly home to my husband. Someone asked me (dear Sharon) who takes care
of me. I responded that I take care of
me. In retrospect, that is a wrong
statement. I have so many around me that
love me and assist with my well-being.
Thank you all.
Gary will surely wonder where I’ve been. It is yet unknown how I will respond. Will I just hug him and say nothing? Will I start with the customary “I Love YOU!”
or what?
Here is my task list next week:
- Have a trust attorney review our wills, advanced directives and form our trust. (Ironically, I asked for a referral a few days before my brother died.
- Make cremation arrangements and pay for them for both Gary and myself.
- Make an appointment for a much-needed check up.
- Start the diet that I interrupted when I left for Texas.
- Make an appointment with Gary’s new doctor for an exam.
- Calendar a reminder to call my sister in law
Dementia is no fun, but it is better than what I just
experienced in Texas. Even though Gary
is not fully the man I married, I still love him with all my heart and will be
there until the end.
Monday, January 19, 2015
The Christmas Present that just keeps on giving me stress!
When Gary was a teenager, he was a very accomplished drummer. He was in a band for several years until he broke his wrist in a fall and somehow drifted away from the hobby.
He is now 66. When we lived in the Bay Area, he celebrated many birthdays but on one of his birthdays (in his late 40s), I rented a rehearsal studio for him, complete with a drum set and he played for almost 4 hours. I never forgot how happy he was during that time. So, when he announced that he wanted a drum set for Christmas, my heart gave in to the whim.
The week before Christmas, I started shopping online and found many drum sets for purchase. I picked out 4 and showed him. While looking at them, I noticed an ad on the side page for an electronic set. I pointed out the option and after much studying, he decided that was his choice. The electronic set was ordered to be delivered on Christmas Eve. During all this I realized that the drum set did not include a throne or stool to sit on. I ordered it separately for delivery after Christmas. I should have known this purchase was too easy.
The LARGE box arrived on Christmas Eve as ordered. I am always amazed at how Santa fits all those items in such a tiny sleigh.... I was more amazed when we opened the box on Christmas Day that the entire set was packed carefully in 10 boxes and puzzled into one large box. I did not pay a lot of attention to how the boxes came out of the large box as my Dad and Gary unpacked most of them. Now, for the directions.
Gary is pretty much a pain in the butt when it comes to assembling anything. His mechanical skills which were formerly well-honed have all but disappeared. Dad and I took over and after about 4 hours, assembled the stands, drums and various pieces. (I am omitting the yelling, frustration, curse words, perspiration and crying from the story. All from me, of course. My Dad was an angel in this situation.)
Gary sat down the play the drums. There was no sound. Dang it! After more research, we determined around 9:00 that night that it needed either headphones (for private playing) or speakers. NOT INCLUDED. I explained this to Gary and we decided to visit Best Buy the following day to purchase both.
After returning from Best Buy the following afternoon, it was determined that both the speakers and the headphones worked but not to Gary's liking. "Why didn't you just get me a regular set of drums liked I asked? Send them back."
The words were deafening. Really? After all that assembly, upset and unrest and you want to return them? Well, after all, it was a $400 dollar purchase and if he is not going to use them, well, I will send them back to the store.
My father and I started to disassemble the electronic drums. Much to our chagrin, we realized that all those components had to go back into the exact box from whence they came and the box needed to be placed carefully back into the Large BOX in the exact same position. How disheartening that was!
Hours later.......I am ready to leave my husband and go to the mountains to be a hermit. Had my father not been there helping and calming me, I may have really left.
At one point, I was so stressed over getting all boxes back into the box that he looked at me and said, "Why don't you walk away and let me do this?" How magical that moment was for me.
I walked away for a while and heard Gary say, "Why are you packing up my drums?" He had forgotten why the drums were not suitable for him.
Dad and I sealed the box he had finished and put it by the front door for its pick up by the same poor fed-ex guy who delivered it the first time. It sat for three days, in the way, awaiting its pick up. What a sore issue it was. Finally, one evening around 7, the door bell rang and the carrier took away the drums. He also delivered another box....the separately ordered drum throne! I put it aside and thought nothing more of it. I'll return it another time. I was at my limit.
Call me crazy, but I felt guilty that I returned Gary's Christmas present and not replaced it. Several times, he asked when his new drums would arrive. So, I looked on the Internet the day following the return of the electronic set. I went to Amazon and found 10 sets of equal price to the first set and showed them to Gary. His response was that the drums I was searching were not good enough and that the cymbals needed to be made by Zildjian. That added several hundred dollars to the purchase. NO WAY> I got over my guilt rapidly and told him we would have to keep shopping.
It was not the money. It was the point.
So, Mr. Gary, you will need to wait. Sure.....another week. I went back to the Internet, found the "perfect" drums and ordered them. They arrived and on this past Saturday, I put them together. I know nothing about drums. I know nothing of high hats, toms, etc. Of course, the set did not include directions.
Luckily, I found videos on the Internet that showed how to set up a similar set. Of course,the variations were not explained and I had to look at still pictures, zoom in and blow up the picture to see intricacies of the pieces. For example:
YouTUBE does not have a question and answer forum. So, I used the best source of knowledge I had in the house.....Gary. I convinced him that this project was not overwhelming and that if he used logic he could help me. Of course, he knew. Change the center of gravity and mount the darn thing lower! When asked how to make the high hat pedal work, he instantly rearranged the pieces and it worked like he had done it everyday.
The drums are assembled. The boxes have been destroyed. Guess what? I even kept the drum throne ordered for the first set so he can sit at the drums and play as much as he wants. He did just that yesterday. He just needs to practice again and again. The drummer boy is still in there. He was smiling.
After about an hour of playing by himself, he came into the office and said, "There is just one more problem. " When asked what now, he responded, "My leg hurts from pounding the pedal against the big drum."
After more questioning, we determined that his muscles were sore and there was nothing "WRONG" with the drums. Sorry dear, you will just have to keep practicing and build up those muscles. Amazon can't fix that!
Glad that adventure is DONE!
Tuesday, December 9, 2014
Confusion: Wife versus daughter
Gary and I had plans to attend the Rancho Cordova Christmas Tree Lighting event on Sunday evening. Since we are so close, we decided to walk. So, since it was chilly outside, we bundled up. I made sure Gary had his phone and I carried mine....just in case.
Right before we left Gary asked if he should call Ada and tell her to meet us at the park. I told him that I am Ada. He looked at me with a rather funny, inquisitive look and said, "I know you are Ada but I'm talking about my wife, Ada Mae." I knew I was fighting a losing battle but attempted to explain who I was, repeating that we have been married 29 years and that we have never been separated. I thought we were experiencing the confusion from last week when he thought I was his new wife. No, he thought I am his daughter, Heather but named Ada for now....
As we walked the .7 mile to the park, Gary pulled out his cell phone and called my cell phone, so I answered. He got angry that I was answering Ada's cell phone. After multiple attempts to reach "her", I decided to let the phone go to voicemail. He left her an extensive message telling her that we would meet her at the Christmas Tree lighting and that once we got there, he would call her back and tell her where to meet us.
At this point, I just accepted his confusion and tried not to feel anything. During the mini-concert and throughout the event, he could not understand why Ada was not calling him. I repeatedly explained that I was indeed Ada and I was not going to call him back since I was sitting next to him. He wasn't getting it.
The tree was lit and the snow and whole event was wonderful. We proceeded to walk home. It was very cold and then I realized that he had left his gloves somewhere....another loss. And those were his good gloves. (Note to self: don't buy anything expensive for him...its a waste of money)
We got home and fixed dinner. The confusion went on for over an hour and he kept calling me Ada but thinking I was Heather (only named Ada). I got fed up and went into the office to work on the computer. He called on the cell and I answered. He asked where I had been and why I had not come to the tree lighting. (he was in the other room and could not see me). I explained that I was in our office and he needed to come in and see me. He did, saw me on the phone and realized who I was. He went back into the den and announced that his daughter had left.
I again tried to explain and ended up calling Heather. She told him that she had been home all day and had not been here. He sort of got it but spent the rest of the evening telling me about the tree lighting and what a good time they had.
The next morning, he was fine. I told him that it hurt my feelings but that I understand that he cannot help it. He hugged me, apologized and we took him to the CLUB. He had a great day.
Santa visited the CLUB and Gary told him that he wanted a 40ft sailboat for Christmas. As a good friend said, "After all, a 60 footer is just too much to handle."
Maybe I'm a little slow, but I am starting to realize that spending time trying to convince him of reality or trying to get him to act differently or have things make sense is just frustrating both of us. I just need to let go and relax. Yes, that is what I will practice....yes, that is a good solution for now.
Guess I better start shopping for the yacht.
Right before we left Gary asked if he should call Ada and tell her to meet us at the park. I told him that I am Ada. He looked at me with a rather funny, inquisitive look and said, "I know you are Ada but I'm talking about my wife, Ada Mae." I knew I was fighting a losing battle but attempted to explain who I was, repeating that we have been married 29 years and that we have never been separated. I thought we were experiencing the confusion from last week when he thought I was his new wife. No, he thought I am his daughter, Heather but named Ada for now....
As we walked the .7 mile to the park, Gary pulled out his cell phone and called my cell phone, so I answered. He got angry that I was answering Ada's cell phone. After multiple attempts to reach "her", I decided to let the phone go to voicemail. He left her an extensive message telling her that we would meet her at the Christmas Tree lighting and that once we got there, he would call her back and tell her where to meet us.
At this point, I just accepted his confusion and tried not to feel anything. During the mini-concert and throughout the event, he could not understand why Ada was not calling him. I repeatedly explained that I was indeed Ada and I was not going to call him back since I was sitting next to him. He wasn't getting it.
The tree was lit and the snow and whole event was wonderful. We proceeded to walk home. It was very cold and then I realized that he had left his gloves somewhere....another loss. And those were his good gloves. (Note to self: don't buy anything expensive for him...its a waste of money)
We got home and fixed dinner. The confusion went on for over an hour and he kept calling me Ada but thinking I was Heather (only named Ada). I got fed up and went into the office to work on the computer. He called on the cell and I answered. He asked where I had been and why I had not come to the tree lighting. (he was in the other room and could not see me). I explained that I was in our office and he needed to come in and see me. He did, saw me on the phone and realized who I was. He went back into the den and announced that his daughter had left.
I again tried to explain and ended up calling Heather. She told him that she had been home all day and had not been here. He sort of got it but spent the rest of the evening telling me about the tree lighting and what a good time they had.
The next morning, he was fine. I told him that it hurt my feelings but that I understand that he cannot help it. He hugged me, apologized and we took him to the CLUB. He had a great day.
Santa visited the CLUB and Gary told him that he wanted a 40ft sailboat for Christmas. As a good friend said, "After all, a 60 footer is just too much to handle."
Maybe I'm a little slow, but I am starting to realize that spending time trying to convince him of reality or trying to get him to act differently or have things make sense is just frustrating both of us. I just need to let go and relax. Yes, that is what I will practice....yes, that is a good solution for now.
Guess I better start shopping for the yacht.
Saturday, September 27, 2014
Melancholy and Joy
Gary and I went to Dinuba and back on Thursday to pick up Heather and Alexander for the weekend. She was kind enough to help us out while I went to a two day Leadership Retreat. They stayed with Gary while I headed to the California foothills to assist with the Rancho Cordova Leadership Retreat.
While I was gone, he called me many times and could not remember from one call to the next whether or not I was coming home Friday night, Saturday night or some other time. Heather says she told him repeatedly but he just could not retain it.
I called him on Saturday morning before the retreat re-started and awoke him. He said that he missed me all night.(Heather reported that he came in her room 6 times throughout the night asking various questions).
After I spoke with him, I realized how very much I miss him and I don't mean just last night. I miss the man I married. I miss the guy who could help me think through and solve complex problems. I'm dealing with some pretty important decisions right now and I have to rely on acquaintances and Heather rather than my husband. Processing is hard when I am used to having his insight. She was very helpful in letting me process through some difficult decisions that I cannot share here.
I spent alot of today NOT "being here now" at the retreat and feeling melancholy about the grief I feel over losing him, even when he is still here. He still looks at me with such love and intensity but the whole picture is now missing. I am grieving a man who is not dead. The pain is excruciating.
When I got home today, both Alexander and Gary were taking naps so Heather and I had some time to plan, process and discuss their moving in with us early next year. Since she spent two days with Gary, I asked her feedback on his brain capacity. She sees a decline since she was here a couple of months ago. We agreed that he needs an assistant more hours than I had originally planned. It will be expensive until she gets here.
In the middle of our conversation about my grieving for him, I got very emotional and we both cried. She sat in the chair with me and expressed that she too misses her Dad. She never really knew well the Gary that I knew. I am sad for us both. The bond we are forging will be very strong a nd we can rely on each other. She is the daughter I always wanted.
He realizes that they are coming to live with us and he is excited to have his daughter with us. He may not remember that tomorrow, so the good news is I get to share the news with him all over again and watch him get excited at the thought.
He is currently watching "Dora the Explorer" with his grandson. Pretty cool.
While I was gone, he called me many times and could not remember from one call to the next whether or not I was coming home Friday night, Saturday night or some other time. Heather says she told him repeatedly but he just could not retain it.
I called him on Saturday morning before the retreat re-started and awoke him. He said that he missed me all night.(Heather reported that he came in her room 6 times throughout the night asking various questions).
After I spoke with him, I realized how very much I miss him and I don't mean just last night. I miss the man I married. I miss the guy who could help me think through and solve complex problems. I'm dealing with some pretty important decisions right now and I have to rely on acquaintances and Heather rather than my husband. Processing is hard when I am used to having his insight. She was very helpful in letting me process through some difficult decisions that I cannot share here.
I spent alot of today NOT "being here now" at the retreat and feeling melancholy about the grief I feel over losing him, even when he is still here. He still looks at me with such love and intensity but the whole picture is now missing. I am grieving a man who is not dead. The pain is excruciating.
When I got home today, both Alexander and Gary were taking naps so Heather and I had some time to plan, process and discuss their moving in with us early next year. Since she spent two days with Gary, I asked her feedback on his brain capacity. She sees a decline since she was here a couple of months ago. We agreed that he needs an assistant more hours than I had originally planned. It will be expensive until she gets here.
In the middle of our conversation about my grieving for him, I got very emotional and we both cried. She sat in the chair with me and expressed that she too misses her Dad. She never really knew well the Gary that I knew. I am sad for us both. The bond we are forging will be very strong a nd we can rely on each other. She is the daughter I always wanted.
He realizes that they are coming to live with us and he is excited to have his daughter with us. He may not remember that tomorrow, so the good news is I get to share the news with him all over again and watch him get excited at the thought.
He is currently watching "Dora the Explorer" with his grandson. Pretty cool.
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