I love music. I forget to play it as I should. Especially now. You know, soothe the savage beast and all. And I don't mean he is the beast, in case you wondered.
Last night the house sparkled and a Bach's collection of works for the organ rumbled throughout. Lights were dimmed and flowers were fresh. As I dressed my real life dolly, my six foot Raggedy Andy, he kept asking what time they were coming and exactly what their names were. He also was specific about what he wanted to wear; I hope I found it.
I tried desperately to keep up with the steady stream of needs, while getting finger foods ready for the oven and jumping in the shower myself. He sat and asked, while I did last minute preparations, so I gave him jobs. He tried to open a bag of nuts, a bag of mixed chocolates, a box of flatbread crackers. He couldn't manage any of those. His strength is waning, and they are making packaging a lot tougher these days to get into. But I suspect there was more to it than that.
The women in my book club are retired teachers from Taft, the school where he retired from as its principal. As our friends came in, he sparkled like the house. He gathered each in his arms and kissed everyone. He sat in the circle of women as we discussed the latest book we'd read, never thinking of leaving the room, as he wasn't part of the book club. No one in the circle, including me, would ever have thought of asking him to either.
He was charming and offered a few memories from his childhood as they were relevant in the discussion. His language, of course, was in his own "Japanese", but not one of the people in that circle of women acted as though he hadn't made perfect sense.
When it was time for everyone to leave, he got up and got his own coat on, found a flashlight in the place we keep our emergency flashlights, (an amazing feat for any of us, by the way, to actually find anything in that space) and asked to help each of them to their car.
Several of these wonderful women whispered in my ear that they were amazed and hadn't known what to expect, but it wasn't this charming behavior. I slipped a little further down that rabbit hole I have been discussing. I felt as though I had been lying to everyone or at least exaggerating. We had a similar experience when visiting our neighbors the week before. We shared dinner with them and a group of their friends, and then shared a bible study session. These sweet people included him lovingly as well, and he opened and blossomed under the warmth of their attention.
It is very important to realize that he does lighten and brighten in the face of loving, social stimulation. This is a very sociable man and he has been as isolated as I have been for much too long.
I think I will put the Bach back on.
Saturday, March 10, 2012
Sunday, March 4, 2012
Jekyll & Hyde
I love the sun. It's peeking out from March's fast moving cloud cover, hinting at something better coming. The air is still brisk...cold enough to turn your exposed skin to toe-cicles, or finger-cicles, whichever you have been foolish enough to leave uncovered. The sun warms the inside parts of me which have been yearning for its attention all winter. I feel easier and yet in some ways more tense. The changing weather affects me as does my own journey experience. I am much easier with him but he is much worse. I suspect those two things are related. As his behavior gets more bizarre, I react in a more maternal way, less like a partner who has been stood up.
Last night we went to a small party to celebrate my brother's birthday with him. There was a nice crowd and good food and conversation. Stew brightened visibly with the social stimulation and I felt free. I drank a little too much, uncharacteristic of me...but it felt good! I thoroughly enjoyed the discussions, the social exposure, the fun. I also enjoyed the feeling that he was happy and watched over without my direct involvement. Freedom.
When we got home, he went immediately into his latest behavior, which mimics a seizure, or an over stressed nervous system. It might be a result of the latest drug we are trying; it might be a result of over stimulation; it might be a natural part of the progression of this disease. But he shakes as if he's having a seizure and becomes very agitated. He searches manically for something that is not missing, that he can't describe or explain. I have learned to help him dress for bed and to get him there quickly, as his ability to climb stairs and even to walk is impaired severely in this condition.
I feel whiplashed by the contrasts in my own emotional state. I have often described these feelings as being "bi-polar". I am not, of course, actually bi-polar, but the severe mood swings so easily affected by his condition, our environment, the weather, all seem to mimic what I have heard of this condition.
I am getting more tense over the degree and speed of change I see in his condition. The decline in his ability to figure out how to dress and undress and use the toilet are harbingers of impending negative change in the stage of the disease. But I am heartened by the softening of my attitude toward him that seems to accompany these changes.
I have managed to be very angry at my partner in life because his behavior indicated a kind of leaving me. It is finally becoming very hard to muster up any anger with someone who is this lost.
Last night we went to a small party to celebrate my brother's birthday with him. There was a nice crowd and good food and conversation. Stew brightened visibly with the social stimulation and I felt free. I drank a little too much, uncharacteristic of me...but it felt good! I thoroughly enjoyed the discussions, the social exposure, the fun. I also enjoyed the feeling that he was happy and watched over without my direct involvement. Freedom.
When we got home, he went immediately into his latest behavior, which mimics a seizure, or an over stressed nervous system. It might be a result of the latest drug we are trying; it might be a result of over stimulation; it might be a natural part of the progression of this disease. But he shakes as if he's having a seizure and becomes very agitated. He searches manically for something that is not missing, that he can't describe or explain. I have learned to help him dress for bed and to get him there quickly, as his ability to climb stairs and even to walk is impaired severely in this condition.
I feel whiplashed by the contrasts in my own emotional state. I have often described these feelings as being "bi-polar". I am not, of course, actually bi-polar, but the severe mood swings so easily affected by his condition, our environment, the weather, all seem to mimic what I have heard of this condition.
I am getting more tense over the degree and speed of change I see in his condition. The decline in his ability to figure out how to dress and undress and use the toilet are harbingers of impending negative change in the stage of the disease. But I am heartened by the softening of my attitude toward him that seems to accompany these changes.
I have managed to be very angry at my partner in life because his behavior indicated a kind of leaving me. It is finally becoming very hard to muster up any anger with someone who is this lost.
Sunday, February 19, 2012
Ninjas
You know that warrior stuff I spoke of before? That force, that fight in me? I suppose some of that is true, but I am disappointed in myself. My incapacitated husband loves me better in his own limited way than I do him. Oh, I feed him and monitor pills and give him showers and dress him and field myriads of questions all day long....also field myriads of lost objects all day long, some lost in the house, but lately, lost only in his mind. I even muster some good grace about it all, but mostly it's a brusque, "really?" type response to his crazy responses. (I use the word crazy to describe his pouring coffee on his cereal in the bowl instead of milk, for example.)
But as the day grows and my fatigue sets in, my patience thins to nothing. Now I know that this man, the one who thought CPR involved sucking and not blowing, the one who faints at the sight of blood, who couldn't change a diaper, would be terrible in my role. I would probably die in his care if it were reversed. But he would love me, and he would do everything he could think of to help me.
I, on the other hand, would be voted most likely to produce a good looking patient. He will be clean, showered, shaved, teeth brushed, mouth guard in. He will be fed very healthful foods high in the current rage regarding Altzheimers' cures (right now it's coconut oil.)
I fascinates me that I am so much better at this role than he would ever have been, and yet, I know I would be proud of him and I am not of me. He would have done a lousy job, and it would have been a better job than my superb efforts.
Because he wouldn't resent it. He would just love me.
My shrink said an important thing to me tonight. She said I couldn't wait to live my life until after he was gone. I needed to live right now. After I got over the despair of actually talking of such circmumstance, I began to think.
Maybe I should put together a model of care that would meet both our needs right now. Maybe we should start with a model not unlike the coop preschools. Everyone participates in the care and pays according to what they can't provide in effort. That way caregivers would not be isolated and patients wouldn't be either! We could probably use space for free...Altzheimers association spaces, churches....maybe even some oversight might be provided by Altzheimers personnel. I can see it growing into a halfway house type thing so that caregivers can take turns getting away.
I see the image and dream the dream.
I remain too exhausted to begin.
But as the day grows and my fatigue sets in, my patience thins to nothing. Now I know that this man, the one who thought CPR involved sucking and not blowing, the one who faints at the sight of blood, who couldn't change a diaper, would be terrible in my role. I would probably die in his care if it were reversed. But he would love me, and he would do everything he could think of to help me.
I, on the other hand, would be voted most likely to produce a good looking patient. He will be clean, showered, shaved, teeth brushed, mouth guard in. He will be fed very healthful foods high in the current rage regarding Altzheimers' cures (right now it's coconut oil.)
I fascinates me that I am so much better at this role than he would ever have been, and yet, I know I would be proud of him and I am not of me. He would have done a lousy job, and it would have been a better job than my superb efforts.
Because he wouldn't resent it. He would just love me.
My shrink said an important thing to me tonight. She said I couldn't wait to live my life until after he was gone. I needed to live right now. After I got over the despair of actually talking of such circmumstance, I began to think.
Maybe I should put together a model of care that would meet both our needs right now. Maybe we should start with a model not unlike the coop preschools. Everyone participates in the care and pays according to what they can't provide in effort. That way caregivers would not be isolated and patients wouldn't be either! We could probably use space for free...Altzheimers association spaces, churches....maybe even some oversight might be provided by Altzheimers personnel. I can see it growing into a halfway house type thing so that caregivers can take turns getting away.
I see the image and dream the dream.
I remain too exhausted to begin.
Karma
Apparently I "choose to suffer." My former shrink tried to teach me that suffering is a choice. I think she was referring to that yogic practice of 'staying in the moment'. Yogis believe that suffering is found in the train trip to the past and the obsession with the future. If you stay in the moment, you can find it to be suffering free. Don't know about you, but my moments can make me suffer pretty good. It is heart breaking and wrenching to watch someone you love fade away, filled with anxiety and angst.
In literature Altzheimer's is frequently referred to as "the long goodbye." Here in this house, it is and it isn't. I suppose this loss is longer than a car accident which can take someone immediately, but it feels really fast. After the initial strangeness of diagnosis and the stages of denial settled down, I peered over the top of that particular nasty pudding, and he was gone. A skinny old version, a stand-in clone, an apparition less fun and lots more trouble had taken his place. That feels fast, sudden.
And in other ways it is a grinding, never ending assembly line of pain and loss. Like Lucy Riccardo, I am dropping and breaking most of what I am dealt.
So one of the many painful things I am learning is that I am not good at this. I remain obsessed with my own losses and not enough about his! I am already worn out emotionally, and though I yearn for a nice waltz, I fear we have just begun this polka.
And we appear to be dancing separately.
In literature Altzheimer's is frequently referred to as "the long goodbye." Here in this house, it is and it isn't. I suppose this loss is longer than a car accident which can take someone immediately, but it feels really fast. After the initial strangeness of diagnosis and the stages of denial settled down, I peered over the top of that particular nasty pudding, and he was gone. A skinny old version, a stand-in clone, an apparition less fun and lots more trouble had taken his place. That feels fast, sudden.
And in other ways it is a grinding, never ending assembly line of pain and loss. Like Lucy Riccardo, I am dropping and breaking most of what I am dealt.
So one of the many painful things I am learning is that I am not good at this. I remain obsessed with my own losses and not enough about his! I am already worn out emotionally, and though I yearn for a nice waltz, I fear we have just begun this polka.
And we appear to be dancing separately.
Saturday, February 18, 2012
Alice
This rabbit hole is deep and scary. I actually tired myself out from being so angry this evening. I retreated into my computer, a familiar escapist behavior for me in times of stress and/or boredom, both of which I have been struggling with lately. I have been working harder than ever but am grossly and hugely BORED! Can one be grief stricken, enraged, AND bored at the same time? Apparently so.
As I was uncharacteristically quiet and withdrawn, he began to talk. It was rambling and strange, of course, and made very little sense. But I began to hear patterns in his thinking. He asked where my house was and if I had children. He asked if I had ever gone to Taft school (where he had gone and returned to when grown, as its principal.) I explained that I had not gone there as a child but had returned to run an adult training program there when the elementary program closed. He got very excited and told me that his wife would be very tickled to hear that as she had done that too! When I explained that I WAS his wife, he replied that he knew that. He then asked me if I had a husband. His easy assumption of diverse beliefs fried my rational circuits enough that I couldn't keep quiet about it. I told him that if he KNEW I was his wife, he had to stop talking about me as if I were someone else. I slipped a little further down the hole.
Later that night, he came from the bathroom and gave me a big kiss. I told him that it confused me that we were kissing since he wasn't sure who I was. He replied, "Don't worry about it. I like you as much as anyone else around here."
As I was uncharacteristically quiet and withdrawn, he began to talk. It was rambling and strange, of course, and made very little sense. But I began to hear patterns in his thinking. He asked where my house was and if I had children. He asked if I had ever gone to Taft school (where he had gone and returned to when grown, as its principal.) I explained that I had not gone there as a child but had returned to run an adult training program there when the elementary program closed. He got very excited and told me that his wife would be very tickled to hear that as she had done that too! When I explained that I WAS his wife, he replied that he knew that. He then asked me if I had a husband. His easy assumption of diverse beliefs fried my rational circuits enough that I couldn't keep quiet about it. I told him that if he KNEW I was his wife, he had to stop talking about me as if I were someone else. I slipped a little further down the hole.
Later that night, he came from the bathroom and gave me a big kiss. I told him that it confused me that we were kissing since he wasn't sure who I was. He replied, "Don't worry about it. I like you as much as anyone else around here."
Friday, February 17, 2012
The Looking Glass
Last night scared me. Not physically, as in immediate danger. But I had a ping of fear that I wouldn't be able to do it after all, to handle it. After the hysteronics settled and I coached myself out of the personal effrontery of the barrage of personal insults I was getting, his unbridled paranoia set in. Each time any well intentioned loved one inquired...you know, those who actually want to know, not the social version of the questions, he was so near me I couldn't actually discuss how bad it was. Although he never lets me out of his sight, I am, apparently, the cause of all these terrible things that were happening.
....and then.....
tonight was lovely.
He was personable and had no serious paranoia episodes. Isn't it funny that one can judge a "good" day from a "bad" day by the degree of paranoia? Tonight he kept checking the furnace room as he deemed some scrub buckets to be too close to the hot pipes. He earnestly pleaded with me to accompany him to do the checking on everything. Even after we had thoroughly checked and made sure nothing was touching said pipes, he would meander back in there to check. He ate the sandwiches I had left for him while I ran out for an hour to yoga. He remarked about how good they were. Usually he eats nothing and if he does, he doesn't remember nor remark upon them in any way. As I helped him dress for bed, I was pleased that he had brushed his teeth on his own. So strange...to be so pleased over the degree of loss.
....and then.....
tonight was lovely.
He was personable and had no serious paranoia episodes. Isn't it funny that one can judge a "good" day from a "bad" day by the degree of paranoia? Tonight he kept checking the furnace room as he deemed some scrub buckets to be too close to the hot pipes. He earnestly pleaded with me to accompany him to do the checking on everything. Even after we had thoroughly checked and made sure nothing was touching said pipes, he would meander back in there to check. He ate the sandwiches I had left for him while I ran out for an hour to yoga. He remarked about how good they were. Usually he eats nothing and if he does, he doesn't remember nor remark upon them in any way. As I helped him dress for bed, I was pleased that he had brushed his teeth on his own. So strange...to be so pleased over the degree of loss.
Thursday, February 9, 2012
Thin ice
I happily announced to the neurologist that we were planning a Greek cruise, a great adventure to celebrate our mutual retirements, our combined 80 plus years of hard work. A cruise to historic places for my old guy to enjoy his passion for history and foreign travel, and my need to be pampered...someone to cook and move us around from place to place. A perfect plan. He took off his glasses and got quiet for a moment. Then he said, "Get travel insurance. Get it now." This I did not expect. I thought maybe a social response like, "Good for you", or even an "Atta girl!" Perhaps some tips on what to expect and/or how to handle some things. But not that stern, direct command.
After he had referred us to a specialist on memory loss, I experienced that same strange sensation. As I asked questions, I caught the looks and slight glances among the specialist and her aides in the room. They all knew something I did not.
There is a ton of literature out on early memory loss. There appear to be lots of support groups available for early onset memory loss (the young). There are meetings to attend and lectures to learn from. There are handouts and social gatherings and internet sites. When this disease progresses to "moderate to severe", the support 'swarm' evaporates. You can call the 'hot line'. That's it. You can get "assisted living" information from them, for example.
It began to dawn on me what everyone was knowing that I was not. I was about to be dropped into a free fall of behaviors and responsibilities that I could not know about until I was there. Sort of like childbirth. No one actually tells you what it will be like or what to expect. Women all keep that information to themselves with knowing glances to each other at baby showers.
In memory clinics, the specialists look at each other that way.
After he had referred us to a specialist on memory loss, I experienced that same strange sensation. As I asked questions, I caught the looks and slight glances among the specialist and her aides in the room. They all knew something I did not.
There is a ton of literature out on early memory loss. There appear to be lots of support groups available for early onset memory loss (the young). There are meetings to attend and lectures to learn from. There are handouts and social gatherings and internet sites. When this disease progresses to "moderate to severe", the support 'swarm' evaporates. You can call the 'hot line'. That's it. You can get "assisted living" information from them, for example.
It began to dawn on me what everyone was knowing that I was not. I was about to be dropped into a free fall of behaviors and responsibilities that I could not know about until I was there. Sort of like childbirth. No one actually tells you what it will be like or what to expect. Women all keep that information to themselves with knowing glances to each other at baby showers.
In memory clinics, the specialists look at each other that way.
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