an insight

I have mentioned the book Ten Thousand Joys, Ten Thousand Sorrows by  Olivia Ames Hoblitzelle.  It is the first book I came upon that was written by a spouse--of a man with advancing Alzheimer’s disease.  She is a fine writer--insightful, and able to speak in psychological terms re: her experience as well as her husband’s.  She is steeped in Eastern (Buddhist) approaches, yet doesn’t sound too holy or self-righteous.  Here is a journal entry of mine from over a  year ago after having read this book.  It is still fresh and relevant in its ideas and its message.

Nov. 6, 2010

This book has turned up at the right moment for me in my journey toward ‘acceptance’,  I’m not sure I would have “gotten it” before.  Who knows, however, maybe I wouldn’t have struggled so much in the last years with anger and frustration if I had found it earlier.  

Here’s my insight:

There seem to be two parallel but distinct paths I am on.  In some ways they can intersect, but in other ways they have lead to confusion and frustration.  It seems to me what she is saying is that acceptance and finding opportunity in what is are both very central.  One path is that what I am to accept and "go with"  is the acceptance of A's diminishing abilities and interests.  Acceptance of his movement into confusion, silence, closing down of pastimes, activities.  The opportunity here is to live more simply, be more in the now, savor what is, etc.   The other path also involves acceptance and opportunity, but here the acceptance is about the requirement for me to step up and be more--both in order to cope and function for the two of us, but also so that I don’t fall by the wayside while walking A's path with him.  Here the opportunities are ‘burning through Karma”--realizing heart and soul growth, finding the way to live in compassion and tenderness while still growing and exploring as-yet unexplored strengths and pathways in life.

I think in the past I have been focused on the loss--loss for me of what  A. was and what I used to be.  The loss of our once-working relationship as it was, and the plans, hopes, and freedoms of this last time in our lives before we have to give in to age and infirmity.  There has been deep sadness regarding his losses (which I have been only too quick to label as unwillingness instead of inability).  But here it seems my challenge is to press forward inside myself while allowing A. to step back.  It is a hard thing to automatically adjust to--particularly since in retirement years the idea was that we were to press forward with each other like two draft horses, or skating partners.  Therefore the idea that what happened to him meant things would happen to me in the  same direction, and vice versa.  

Now the challenge is to figure out how to remain connected to one another while A. quiets down and I keep growing and developing.  Doing my growth in some kind of deep tandem with where he is.  It certainly is daunting to think about.  Yet it also has elements of release for me.  It's a release of sorts to consider that it is a necessary part of my spiritual journey to keep developing--developing parts of myself both in response to what happens to him (finding compassion and tenderness and new means to togetherness) and at the same time allowing parts of me to grow in other directions, too, so that there is substance left to me as he continues to journey down into dementia. 

On the face of things it seems to be unequal, looking at things from my perspective.  Underneath the surface, of course, A. is actively adjusting to loss and change all  the time, and that is a piece of work.  But seen with more self-involved eyes,  it seems he gets to rest and let go while I have to work hard to figure out how to still grow and cope and keep alive.  In a way, though, that arrangement suits my nature--if the shoe were on the other foot I think he would sink with me--be less able to do the forging ahead.  (But maybe I am thinking of A. as he has become instead of who he was.  It has been so long that he has been losing himself.)  In any event, I have always been the ‘going out’ person of the two of us--the seeker of new things and people, the conscious worker at understanding and developing new aspects of myself in relation to him and to the world.  

An aside:  Right now as I sit here I am fighting the thoughts that I ‘should’ be doing something more ‘purposeful’ with this  afternoon:  cook, sew, knit, do bookkeeping for the business, etc.  But I am forcing myself to stick to what is happening right here.  Oh the hobgoblins of DUTY!!  And oh, the challenges of finding enough TIME!)

a 'stuck' place

Here's an example of a place we regularly get stuck.  We had a variant of this conflict just last night, although what happened below took place a while ago.  These days I try hard not to belabor anything, to explain less and exit as soon as I see trouble brewing.  It still comes out of left field, however, no matter how I set my radar.  The pattern, no matter how I try to duck it, always delivers us to the same place in the end.  From  a year or so ago:

Circumstances:  I left for work at 8:45 am and return about 6:50 pm.  Tired.  Hungry.  Knowing there will be nothing prepared for me for dinner. My husband is in the TV room,  and greets me enthusiastically.  He is eating an apple.  He has obviously finished his meal.  I tell him I am tired;  it has been an exceptionally long day.  He keeps eating the apple as I warm up leftovers.  He moves the tv table away from his chair so I can use it in front of mine.  We are watching the news.  It is now maybe 10 minutes since I have gotten home, and 5 minutes after I had sat down to eat.  He starts talking over the news to tell me about something he needs me to do to help him.  Nothing of great urgency, though he clearly has been thinking about this most of the day.

His request is confusing and predicts a complicated series of steps to work through to a solution.  I begin to ask questions--in a voice that quite likely betrays my fatigue and a feeling of being overwhelmed (fed by my hunger).  He gets instantly irritated,  and says "Forget about it.  I won’t ask you for anything ever again.  I’m always wrong, you always criticize me, I don’t want to talk about this anymore, forget I asked."  Then he storms off.

He comes back downstairs after about 25 minutes and I attempt to give him a hug to start over.  He rejects this and says he doesn’t want to hug me, doesn’t want to talk about this either.  He is clearly still very angry.  I ask if I just can explain to him why I reacted the way I did--reiterating again for what seems like the 9 millionth time my desire after a long day not to be hit with things to do just when I get home.  Could he write a note to himself or me, wait until I’m settled, etc?  He goes on to reply testily he always does things wrong, and then twirls his finger next to his head  and says, "I have something wrong with my brain”-- meaning therefore he can’t remember to not tell me these things when I just get home.  (He regularly complains when I mention his memory issues, as he feels I exaggerate them.  But here, he is using them as a reason why he can't do what I ask him to.)  He is clearly very angry with me-- for how many things at this point??  

We have words about how he needs to make accommodations to his memory problems, and he responds he has made SO MANY accommodations...then three minutes later says he hasn’t made many accommodations when I say we both have had to make them, and will continue to need  to do so.  He goes back into, “I won’t ask you for anything, I  don’t want you to do anything about this, I don’t want to talk about it, I don’t want to live with you.   I do fine all by myself--it’s just when you come home.  I don’t want to live with you anymore.”  Final statement:   “Will you just leave me alone?”

Before the final “Leave me alone”, I attempt to get to what this was coming from, and his response is more about he always gets criticized, can’t do anything right, I can either let him live somewhere else or I “can love him”--when I ask what he means he mimics me in a hostile way and says, "Isn’t that why we’re still together, because you  LOVE me??"

So I leave him alone the rest of the evening.  I have fantasies about leaving him alone forever, letting him move  somewhere else, as far away as possible.  I am so very sick of these episodes.  He doesn’t seem to  remember all the times when I say thank you, when I tell him he’s done a good job at something, when I do things for him in an easy, relaxed way; when I come up with things for us to do together, when I have  bent over backwards to not get reactive to his hostility, instead just skipping a minute or 5 and then starting again with pleasant talk and hope for the best.

I am so sick of this.  SO sick of always having one more thing that needs to be done.  (It took me until way after 9:30pm  to accomplish the thing he had asked me to do earlier.  Some nice end of the day.  And I am the bad guy.)

And so my angry heart mumbles to itself tonight:  “Go away.  Live somewhere else.  Be happy or confused or burn the house down, I don’t care.  You leave me alone.”  I will go to bed early.  Try hard to let this go, so I can fall asleep and get some rest.

And tomorrow,  I will start all over again.

respite: a dilemma

I've just come home from a lovely week away.  Time with my daughter and granddaughter that was so nurturing.  And so healing.  

Respite is essential.  

Today, my first day back, I was able to do all the day-to-day maintenance I usually do, but with much more lightheartedness and energy.   

I am not sure how many more (if any) times I can go away and leave my hubby at home by himself for any sustained amount of time.  It always involves leaning on friends; friends who are so kind to both of us, and so willing to help me to get time away.  But it also always involves not a small amount of worry--will he get his meds regularly, and on time?  Will he have a halfway decent diet (no matter how much I coordinate and cook ahead and write things down for him?)  Will he have another 'incident' while I am gone?  Will he be lonely?  Vulnerable?  Will he do something that, regardless of how benign it might be, will require days of undoing when I get home?

I have worried about these things for years, but this time it seemed a little more like a Wile E. Coyote kind of thing.  (You know, when Wile E runs right off a cliff, seeming not to realize it, then looks down and sees he is running in thin air, and plummets?)  I have seen the day coming for awhile, and don't even know if it is here yet, when leaving hubby home by himself is no longer wise.  

He has missed me this time, and has made no bones about it.  In the past he has kind of defiantly maintained he is just fine without me and doesn't know what I am talking about when I ask if someone might look in on him from time to time.  "It will be a pleasure to live life the way I want for awhile",  etc., etc.  "I might even go for a bus or train ride to the big city by myself while you are gone."  I used to tremble at these last words, until my kids helped me to see that saying these things and being able to execute the plan were two very different things.

He has always been insistent that he does not need anyone here to "watch" him or "take care of" him.  He is a proud  man, and a private one.  He also can hold a grudge.  Mostly at me.  So insisting on a caretaker might ruin the delicate balance I carefully try to create--a balance between caregiving and providing him autonomy.  I work hard to provide him with reasonable amounts of independence.  There is so much he has lost already.  

Yet, he has difficulty articulating things. He forgets many recent events. He drops or breaks things, can't remember how to work things.   He can get confused, has even gotten lost once or twice a block away from the Main St.  in the town we have lived in for 40 years. 

On the other hand, I know I need occasional time away to be able to sustain myself for the long run.  I know that he needs to know he has the ability to take care of himself in some meaningful ways.  Our kids live in other states.  We live several hours away from his brother, and don't have other relatives nearby.

I take time out for small amounts of respite regularly--time with women friends, time for photography, time once a week when he attends a formal respite program.  Time like this for an hour or three is helpful, and I know I'd be lost without it.  But time of a longer nature provides something different--a deep, deep rest.  A time to breathe, to experience life as I used to know it--coming and going as I please.  Time with others whom I love and gather energy from.  Time with my small grandchildren--who require similar things of me, but who are growing, not declining.  Time with loved and trusted and comforting others, who understand, who know how to give to me in meaningful (though small) ways, and with whom I can have interesting conversations, share ideas, and don't have to explain everything.  

Time.   Sustained time.   Enough time.

I know this is not a unique problem.  Every caregiver has to figure it out.  But it isn't an easy thing to do.  

I honestly believe, however, that respite is the key to endurance.