to friends and family of people with dementia

You probably wouldn't be visiting this site if you weren't in some way touched by someone with dementia.  

Perhaps it is your parent who has this illness, maybe it's a friend.  Or instead it might be a sibling, a neighbor, a spouse.  Perhaps the person  you care about is related to or acting as a caregiver for the one with dementia.  

You wonder how you can be helpful.  And at the same time you are frightened by the spectre of a mind's parting ways with reality, with memory, with the ability to function through daily activities.  Maybe you have some ideas about what a person with dementia looks like--possibly from a visit to a nursing home, a hospital, perhaps from a movie or a book.  

If you are being really introspective and honest, the idea of dementia scares you silly.

But here's the thing.  It's an incredibly lonely, frustrating and sad experience we are having--the one with dementia and the spouse/caregiver as well.  The more pronounced the dementia gets, the more lonely, frustrating and sad it becomes.

I imagine you are saying to yourself that you don't know what to say, or what to do.  If, therefore, you say nothing, or do nothing, you are amplifying our loneliness, our sadness.  We do not expect you to have some cosmic thing to tell us about our situation.  We know full well there is no such thing to say.  We do not imagine that there is anything earth-shattering that you might do to 'fix' things.  (Seasoned caregivers have long ago given up the notion of the 'fix'.  There is no 'fix' to this illness.)  

Mostly we are just trying to get through another day.

If you want to help but don't know what to say, or what to do, just show up somehow.  Come by and keep one of us (or both of us) company.  Offer some respite for the caregiver, by keeping the other company for a bit.  Tell us some jokes.  Talk about old times.  Bring brownies,  or soup to share for lunch together.  Something from your garden.  Bring a photo from "once upon a time when", and reminisce.  Listen to stories, even if they are repeats.

Dementia isn't catching, and it is not particularly scary to witness.  Mostly, it just requires a slower, simpler pace.  (That is, if you are not counting the loss, but you don't need to talk to us about our loss.)  We want diversion.  We want connection to those with whom we have shared love and good times in our better days.  

Try to avoid filling the time with tales of your last trip, cultural adventure, romantic date, new house or couple's project.  We are happy for your freedom and your vivid connection to life.  We had great plans for our time together at this stage of life, and we grieve silently every day for those dashed plans. Comparison of fortunes is hard to avoid--particularly  for the caregiver, whose once open-to-anything life is likely to be reduced to the mundane activities of looking after a person with significant limitations.  

Try not to tell the caregiver that you don't see that anything is "that wrong" with X.   I know you mean well, but to us it feels like you don't believe us when we say we find things difficult.  It feels as if you might be suggesting that your experience trumps ours, and you imagine we are somehow exaggerating.  You may see an unexpectedly well-functioning person in your brief encounter.  Heaven knows she/he is working overtime to rise to the occasion of your visit.  What you won't see is how much it takes out of him/her when you leave--how much sleep is needed to recover from the effort.  But come anyway.  It is worth the effort expended to be connected for a time to people we love and miss.

If you tell the caregiver to let you know if there is anything you can do to help, do not be surprised if she/he never asks.  It is hard for us to ask for help--it's one of the top five challenges of the caregiver, really.  Put yourself  in our shoes.  You probably would have difficulty asking, too.  Instead, take action.  Call up and say you want to come over, or want to take X out for ice cream, or lunch.  Bring over a movie to watch together (not a complicated one).  Tell us you are going to the store and you wonder if there is any odd thing you can pick up for us for tonight.  Better still,  tell the caregiver you are going to ____ in a week and wonder if she/he can arrange to get some coverage so you can go together.  Often it is the caregiver who is starving for normal experiences.  Dementia narrows one's experiences drastically, a fact that is particularly hard for the caregiver. 

Finally, it is fine if you ask, "how is X doing?" and talk about how sad it is that his/her life has become so limited.  Please, however, be mindful that this illness limits both people in the couple, provides deep sadness and loss to the caregiver/spouse as well.   It means so much to have this acknowledged every once in awhile.  It makes us caregivers feel visible.  Human.  Understood.

Don't ever imagine you have nothing to give.

Connection.  Presence.  Showing up.  Laughter.  Diversion.  Friendship.  If you have been close to either one of us, this is what our time together consisted of before dementia.  See, you do know how to do this.  By heart.

   

at the store

There is no winning for either of us at the store.  

Since A’s balance is bad, he pushes the cart.  Since his proprioception is not so hot, either, he steers real clear of obstacles.  This means if there is someone up ahead, he stops about halfway down the aisle so as not to bump into them. Won’t move til they move.  (I won’t even go into the problems with the mid-aisle displays in the grocery store.)  At the head of an aisle, turning corners, this slowing down and hanging back is inevitable.  It just takes way longer.

Because some of his side vision is obstructed due to previous brain hemorrhages, he likes to walk behind me, not next to me.  I think he also likes to walk behind me so he knows where to go, though he denies this.  Because he has dementia, in addition to first paragraph issues, he goes really really slowly.  R-e-a-l-l-y.   S-l-o-w-l-y.

I also think he gets way overstimulated with lights and displays and people.  This adds to his confusion and further slows him down.

The problem is pacing.  He is proud of the fact that, as he says, “I am never in a hurry.”  Unstated words are, “...like you are all the time.”   Yet as slowly as I might go in the store, he goes slower.  And since he keeps me ahead of him, I do not know if he is keeping up or is back in the reeds unless I constantly look behind me.  On purpose, sometimes, I slow down to allow him time to catch up with me.  He just slows down, too.  I can be practically crawling down the aisle, and he can be found stopped in his tracks, halfway back, waiting for me to start moving again.  Yet, according to A., I am speeding through the store with no consideration for him and his more leisurely pace of life.  

If I am not in his eyesight up ahead, he is lost.  If I round the aisle to the next one (which is the exact wrong spot to stand and wait) and he is not right behind me, he stops dead at the end of the aisle and has no idea what to do next.  This is interpreted as my inconsiderately leaving him behind.

I thought I had cracked the code when I started to hold on to the end of the cart.  Not to pull, unless he was doing one of those “stop mid aisle so the object 12 yards down doesn’t  pose a bumping hazard” moves.  Most of the time, it seemed to be a perfect solution in that I knew where he was, he could see me, and we could get out of the store in less than 45 minutes after buying 10 items.  However, that is “treating me like a child”, and therefore not acceptable.

The secondary problem is frustration.  On both our parts.  By the time we are halfway through the store with my being expected to have eyes in the back of my head and his needing to go unreasonably slow, I often am actively talking to myself in an attempt to not run like mad out of the store, get in the car and drive to Oklahoma to start a new life.  He, on the other hand, is equally frustrated--feeling that I am whizzing him through the store in an unkind and unreasonable way.

I have attempted to talk about this with A. so many times.  The most recent time was today.  I explained that if I cannot see him, I cannot know how to go at his pace.  I asked him if he could help me to go his pace by walking alongside me.  He complied, but not without Attitude.  The very next store we went into (this was errand day), it was as if we never had that conversation at all.  

I do go shopping by myself.  Often.  But he needs to get out, too.  He likes to see the world, cruise the aisles, choose his own 5 food groups (ice cream, oreos, vodka, donuts and ice cream).  Often, it is on the shopping trips just for his faves that we have this trouble.   ...And so far I have not yet been able to persuade the manager to have all his favorite items on the same shelf in the front of the store right by the check out stand.

Anyone else experienced the "at the store crazies”?  Did you find a solution??  

or....Does anyone know how to start fresh in Oklahoma?

;o)

Pause

 A cool breeze is filtering into the room after a long stream of hot and humid days and nights.  With summer windows flung wide open, soft rain gently patters on leaves, pavement, skylights and roof.  It is almost dark at 8:05, and one of 'my' cardinals is chipping just outside the window near the porch feeder.  This lovely creature visits several times a day.  Here in the gentle rain, she says goodnight.


Before I am ready, winter will be back, and these sounds and these whispers of sweet fresh air will be a thing of memory. This is time to savor.


Amidst myriad chores, obligations, and countless caregiving duties, here is our beautiful, peaceful world inviting me to slow down and participate.


Quiet, Mike.  Breathe.


All the rest will be here tomorrow.  But this here, this is NOW.  


This is what I need.

Weeding the garden

I had today off, and woke filled with thoughts of doing a number of pleasing creative projects, having just jumped over the hump of bill-paying, bookkeeping and account reckoning (three weeks tardy for this month, but all caught up and recorded through next month.  Enormous relief.)

Yet I lingered in bed on this beautiful morning, as I usually do.    When I ventured outside the room, A. needed help finding a pair of pants he had put away but forgot where.  He asked for three books to be downloaded from Talking Books and put on a flash drive for his reader.  I cleaned up some clutter in the kitchen, paid a couple of bills and ordered new checks while waiting for the books to download.  Finally ate my cereal at around 11 am.  


Then went out to A's garden with him to weed. A. used to be a talented and enthusiastic gardener.   I have never been a gardener.  Although I have always appreciated his beautiful garden, I have always preferred to walk, take photos, listen to birds, watch the clouds.  A. has taught me the little I know about the garden.  Today the weeds were extensive, and they were confusing to me, as I  really don't know what I am doing.  A. no longer recognizes any of his plants, does not know how to tend them, and cannot distinguish between what is a weed and what are the plants.  


This is painful for both of us--it has brought each of us to tears many times.   


Today I set him near some weeds and showed him how to pull them, then started in the garden myself.  Spent about 1 1/2 hours there.  I had started to weed last weekend, and today managed to get around to about two thirds of the garden.   So many dense, long lateral-trailing roots to remove.  Unsure if I was pulling up good plants  in the process.  It is certain this garden has not been weeded in at least two years.  


I looked over after about 1/2 hour of our quietly working together in different areas, only to find A pulling out grass by  clumps outside the stones that ring the garden, leaving a large dirt area where the grass should be.  I re-directed him to the weeds inside the stone ring, but he had no idea what I was talking about when I referred to "inside" the stone border.  Explaining this took about 10 repetitions, and I could tell he still did not understand. Much of the time he was not even looking where I was pointing.    Twice I put a stone marker where there were numerous weeds.  He said he still could not "see" them.  Didn't know what I was referring to when I said, "Pull out these plants here."  


When I thought he was finally in an appropriate place, I went back to weeding, only to look over and find him pulling up grass again outside the garden.  


I re-directed him again, but he kept losing focus, interest, or his place.  Said he didn't want to do this, he doesn't know how to do it, and he "doesn't have to".  I got him a scissors and encouraged him to cut the grass shorter at the edge of the stones where the mower can't reach, as this appeared to be  upsetting to him and likely was the cause of his pulling up the lawn.  He settled down to it,  like a hair stylist creating a punk "do"--cutting one blade at a time, leaving adjacent blades long.  Then he abruptly went inside, leaving all weeds, tools and containers for me to deal with.


I came inside about a half hour later and found him sound asleep in his chair.

I still had another plant to pot, but a hole needed to be drilled in the bottom of the pot and I was by then tired and frustrated and hot.  Using power tools scares me, and is another thing I've never had to do, so I have no confidence or skill.    So at around 1:30,  I had a cold drink and read the paper.  Soon I  found myself dozing in my chair while watching clouds, so I went to bed and instantly fell asleep.  After I woke, I was sure that there would be still more of his  needs that had to be met waiting for me when I rose.  (And there were.)  There was also supper to prepare, a couple of work calls to make.  Wash to do.  Mail to get and go through.  


My free day for creativity was shot.  Not wanting to face all those further interruptions, I just lay in bed, awake.  Trying to capture some peace, if not creativity, in the day.


This is how I spend my life. Doing the best I can to be loving and supportive to this man who looks like the man I married, but is actually anywhere from 10 years old to 2--in an old man's body.  


I miss my husband, my partner, MY helper and supporter.  He has gone away.  For good.  


...and left me alone  with this often-helpless man-child to love and to find a way to cherish.


amen

tired

We are in another state visiting our daughter and family.   I am coming down with a chest cold, which I caught from my sweet granddaughter.   It's the end of the day, and she is in the other room, resisting mightily going to bed.  The little one keeps crying;  complaining about needing to poop, needing water, needing her lovey, etc.  This ordinarily wouldn't bother me much--a developmental issue, is all.  Our daughter is an excellent mom.  She will handle it well.  My husband is bothering me, though, tremendously, and our granddaughter's crying puts me over the edge.  


How am I to maintain any semblance of serenity when he seems so unbelievably aggravating on an ongoing basis?  


He and I have been together all day, and I feel as if I am going to explode with frustration and anger if A. doesn't stop talking to me for awhile. Lately he mumbles in this throaty, faint way, full of fumbles and re-starts due to a multitude of unremembered words.  He keeps trying to explain himself.  Even though most of what he wants to say (assessed through my current filter of fatigue and lack of much patience) is not worth the effort to begin with.  Most recently he wanted to remind me that when our kids resisted going to bed, we went in and rocked them.  Problem is that we rocked them when they were infants.  Our grandbaby I is 2.  Rocking is not the answer at this age.  I respond in what I think is a kind and thoughtful way.  He doesn't understand me.  I have to repeat myself, say things differently, hoping for a better outcome.  Today, with laryngitis setting in, it has been a huge effort.


At the same time, I am trying very unsuccessfully to download a talking book for A.  I am trying to prevent what has been happening in the last few days from happening anymore:  A sits for what seems like hours in a darkening room and stares off into space.  This makes me nuts.  This behavior appears to me to be asking for something.  I translate this into, "Here I am at L's house.  There is nothing to do, everyone is paying attention to the baby."   He has made up his mind for unknown reasons to resist any attempts on the part of others to turn on the tv for him.  Watching tv at this time of day is what he usually does.  For all I know, all he does when the tv is on is stare at that, too.  But his sitting and staring inspires something in me that feels like, "If he is unable to amuse himself, it is your job to set something up that will stimulate him.  Entertain him. Sustain what is left of his mind."


When A is not staring into space, he is either ritually unpacking and repacking his suitcase looking for things, or heading out to the nearby shopping center for the third, fourth, fifth time in the day.   


I think about patience.  I do not want to yell at him.  This is not his fault.  But damn, it is not my fault, either.  I don't feel well.  I want to go to bed.  He will go to bed if I do.  I do not want that.  I want to be by myself, finally, while I sleep. I want to enter the oblivion of sleep without him awake beside me tonight. His presence can delay sleep, reminding me of all I have lost, all that needs doing, and the utter futility of most of it.


So, even though he said to me about 15 minutes ago he was going to bed, and even though I encouraged him to stay up for a few minutes to talk with our son and grandson if they called (and now they haven't called), when I tell him it's ok for him to go to bed he says he'll stay up, he's not tired.  Ten minutes pass, then he tells me he's going to bed.  This is one of the many things that make me crazy.  No matter what he says, he reliably will contradict himself in a matter of minutes.  


My tired spirit yearns for this nightmare to have a predictable end.  (And yet that end I wish for would mean the end of my husband's life.)  I tell myself I could do most anything with a predictable end.   I'd cope in part by counting down the days.  Fantasize about what I would be able to do when this is over.  Be busy making plans to go places, be with friends, be alone, sleep, create things with the energy I now spend simply to perform maintenance, plodding ahead one day at a time.  This type of dementia has no predictable end, however.  Who knows how long?  My fear is that when it ends, I will be in my 80s, my relative youth spent, nothing left of me to begin again.


I know the message for me right now is 'self care'.  I should remind myself that I didn't cause this, I can't fix it, and I need to look after myself.  And I am doing the best I can.  And that A is well enough cared for--it is I who needs looking after. Yet I keep looking for something a little more original.  A new way to look at things.  An epiphany that makes it easier to stay the course.  


What I know, however, is that tomorrow will come, and an indefinite number of tomorrows after that, and we will all still be here, including this mostly gentle, benighted man who is masquerading as my husband.  And he will need care, and patience, and loving companionship, and this is how my life will be.    

    

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.  

a day in the life

Very discombobulated (but rather typical) day.  My beloved at his prime.  I start to feel a little crazy around noon, so I escape with a friend for a little hike through the woods to find some calm for myself.    

Returning home, I take my husband grocery shopping for his favorite supplies.

We experience the usual my-hubby-in-the-grocery-store scene.  I keep hold of the cart to keep him from stopping,  or going extremely slowly, losing me or wandering away.   We make pretty good time, all things being relative.  When we get to the far side of the store without incident,  I'm feeling pretty good. (Probably thanks to my hiking time-out  earlier, and from the lack of any "incident" while shopping,  Living with dementia makes the tiniest sweet things feel like big, happy deals.)   I'm feeling so good that I let myself stop at an Easter display.  I see some darling pink Easter bunny ears there that I am sure our granddaughter would love. I'm feeling so happy, I try them on to see if hubby will laugh.  

On to the checkout.  I spy my favorite checker, who is always great.  Very droll.  Very quick.  Very sweet.  Many shades of hair color, none of which are found in nature.  She is  a woman who has had her own experiences of being a caregiver to a loved one with dementia.  She has told me so.  I really like this woman.

So we go to her checkout.  Being the person that she is, she has finished with the person just before me, and is still chatting her up, big time.  She doesn't even notice me as I unload my cart.  I look forward to having her turn to me.  She always has a smile and an amusing greeting.

I unload the cart.  Hubby is behind me.  All of a sudden I see him wandering off.  I say my (frequent) little prayer that he knows where he is going and will not go too far.  Still unloading.  Suddenly, a woman comes from behind me and says to me with a concerned look,  "There's a man on the floor over here".  I look around, don't see hubby. Until I turn my eyes to the floor.

He has tripped over a stack of grocery baskets on a ridiculous little stand with huge wheels that rotate 360º.  He has made a face plant on the floor, and when I turn to look at him, he is bleeding from his nose, all down his face, etc.  Not a pretty sight.  He is mortified, and therefore armed for bear at me.  I ask, "What happened", and he says something quite snide.  SO, since there are now plenty of people all around him ( a couple of bagger dudes, etc)., and since now there is a line behind me, and since my hovering over him when he is mad only escalates things, I go back to frantically unloading the cart, keeping my eye on him, but unloading, still.  

My checker has yelled,  "There's a man down here!" and has left  her station, calling someone over to finish our transaction.  She goes to join hubby--gets right down with him and talks to him and uses her gentle humor.  I know he is in good hands.  Meantime the store manager wants to know what happened and if there is anything she can do,  etc.  I tell her to move those stupid baskets, that's what.  They both ultimately walk him to a bench at the front of the store while I complete my transaction.  The checker has him by the arm in the nursing-home-hold.  She says she won't let go. 

The blood is coming from an abrasion on his nose, and possibly he has a nose bleed. But he is not in too bad shape, just feeling horrible because of what happened.  I know when he is in danger, but he is more surprised and humiliated than anything else right now.

   

I finish unloading my cart and checking out, but as I look at hubby and I look at the thing he tripped over and what a stupid place it was in (not to mention what a stupid thing it is), I start to get powered up.  

So while I am checking out, a bagging boy moves the basket holder to an equally ridiculous place in front of the next checker.  I have some certain words with him and anyone else who will listen, like the store manager, who is back.  I tell them that there are lots of older people who shop in this store, people who are not so nimble on their feet, may have vision problems, and this storage arrangement is just wrong.  

I am not yelling, I am not being unreasonable, but I am being assertive.  I have taught Assertiveness Training.  I know how to do this.  They kind of say, "Yeah, yeah, Sorry," but they are not taking my assertiveness as seriously as I had expected them to.  As seriously as most people do when I get like this (which is rarely).

By now my items are almost all checked out.  I run my credit card through the thingie, and I am still kind of verbally spouting.  Quietly--but feeling the force of the adrenaline.  Wondering if hubby will still be mad at me when I join him.

The replacement check-out lady is waiting.  Waiting while I continue to fuss and fume.  She then looks at me eye to eye and quietly says,  "The ears."    I say, "What?"  --And she repeats, "The ears....I need the ears."  

I completely forgot.   I had them on the whole time.

Do you get the picture?  Unshaven dotty man bloodied on the floor.   Crazed woman wearing bunny ears alternately unloading her cart and spouting off about the placement of grocery baskets in the aisle where anyone can trip on them.  

My husband is ok.  He got a shiner out of it, which is a good conversation starter for him.  

I am fine, too, although if anyone took my picture as I was defending hubby while wearing bunny ears, we will be moving to another state.

found

....well, maybe in the (long) process of finding:

compassion

patience

resilience

self reliance

joy in solitude

trust in my 'gut' 

boundaries

creativity for comfort

friends for whom flight is not an option

insight

patience

spiritual resources 

nature's solace

photography

ability to distinguish fear from anger

healthy detachment

permission (from self) for respite

patience

fellow travelers

mindfulness

writing

more confidence in financial matters
letting go of past conflicts

ability to do household repairs

increased simplicity

Olivia Hoblitzelle*

travel planning skills

a thicker skin

patience

selectivity with activities and people
'wants', not 'shoulds'
the "beginning again" possibility of each new day

*author of the book:  

Ten Thousand Joys & Ten Thousand Sorrows: A Couple's Journey Through Alzheimer's

why it's lonely sometimes

journal entry from last fall:

Late morning, and my husband puts on his sunglasses.  He is puttering around in the dining room, then says, "I'm going for a walk."   I ask him,  "Is there anything you'd like to do today?  It's such a beautiful day."  He replies,  "No, I don't  think so, I can't think of anything.  I'll just go for a walk."  Tone:  remote, formal, quiet.  I say, "OK", and out he goes.  

He comes back soon, saying,  "I forgot my hat."  I try again:  "I'm thinking of going to Pineland Farms today.  Where the old Pineland used to be."   He replies,  "Pineland Farms, I'd like to do that."   I read a little to him from the website, and he says again "I'd be happy to go."   So off we go.  

He says nothing to me in the car that I don't initiate, so mostly we drive in silence.  The drive takes about 1 hr. and 15 minutes in the country, full of fall color and light.  We get there at around 2.  

We drive around the old buildings, then stop at the visitor's center, hoping to get a map.  I ask him at various times if he wants some cider, a smoothie, some tootsie rolls.  "No thanks".  "I ate breakfast this morning."  "Tootsie rolls aren't good for my teeth."  I buy some cider, but have no cash.  He is standing with me in line, and I ask him to pay for it.   He hands the bill to me instead of the cashier.  

I ask him what he wants to see, and he says he wants to see the cows.   He is walking about six paces behind me, in my 'blind spot" where I can't see him.  He slows down when I slow down, so he doesn't advance much, and won't draw up to my side.  We are walking slowly to begin with, and my slowing down practically brings him to a halt.  He waits for me to begin walking again.  (We have talked about this countless times-- this walking behavior never changes.)

We drive to the cow barn, and go in.  He quickly walks in one direction when I start taking photos of cows.  I walk around the barn, snapping photos.  I look up.  He is standing not far from where we parted.  Just looking.  I ask him what he is looking at.  Answer:  "Cows."  I make some comments, he replies monosylabically.  I chat with the help about various cows.  He asks them a few confusing questions that I can't remember now.  The help can't quite figure out what he is asking.  I ask him what he wants to do now, he says he wants to see the horses.  We drive off.  No comments from him as we drive through the grounds.  

We find what looks like a horse barn, with two horses in a pasture.  We stop.  There are sheep here, mostly, it turns out.  We watch a few outside from afar, then I say I am going to go into the barn.  He follows me.  They are letting groups of sheep out of the barn to the pasture to breed.  At one point someone asks us to move to the other side of a chute.  He stands still until I ask him to move, and I describe to him where to go to get to me.  He does not look at me at all, so cannot see my body language.  He instead just starts to walk out on the ramp that the sheep will use.  I have to direct him out of the way of where the sheep are going.  Of course he looks at me very angrily about this.  At one point he asks the help, "Who teaches these sheep to sing?"  This is humor on his part, not confusion.  Everyone there laughs at his quick wit. 

Then we leave and  drive to the equestrian center.  We park, and there are some horses in fenced off pastures near the parking lot.  We go over there, me leading, as usual.  He stands there, looking.  I take photos.  Again, no conversation initiated by him.  He comments monosylabically when I make remarks about the horses.  I ask him does he want to see more horses, pointing to other pastures.  He says no, he'll just stay there.  I walk to some other pastures,  I am gone maybe 10 minutes.  When I come back, he is walking into the equestrian center.  I ask what he's going to see.  He says, "Nothing, I just want to get out of the sun."  We go in, he just hangs back.  I walk around, find a bathroom ask him if he wants to use one.  He says no.  

I keep looking around, and find a door to the stables. I ask him does he want to go there, he follows me again.  No comments in the stables.  He stands around in the middle of the barn.  I ask him, after I take some photos, "What did you see?"  Answer: "Horses".  

I have found a 'lovey' horsey--she likes to press her nose to my forehead.  She and I are leaning into one another.  He says,  "Showoff."  I say, "Who is a showoff?"  He says, "That horse, rising up like that" -- referring to the horse I am with, who is just standing there. 

I ask him what does he want to do now.  He says he is ready to go home but first he wants to wash his hands.  I show him the bathroom.  He can't turn off the faucet he has just turned on, asks me for help.  In the car, he asks me, "Who owns these horses?"  I read him something from a brochure, tell him what I know.   "Hmm."  he says.  We drive back home.  I turn off the road twice to take a few photos, he says "that's fine."  NO conversation on the way home at all.  We get in the driveway and as he gets out of the car he says, "Well, thanks for that idea.  That was fun."  

He walks into the house and proceeds, at 4:30, to make something to eat, not asking me if I want anything.  At first, not knowing what he is doing in the kitchen, I ask him if he is preparing a meal.  He says yes.  I say, which one.  He replies, "the first one", and then corrects himself.  "I had breakfast earlier.  This is the second one."  I ask if this is his dinner.  He sounds irritated and says "Yes.  Why do you ask?"  I say I just want to know when I start to prepare dinner if I should make any for him.  He says, "No, you don't have to make anything for me."  

After he eats, he goes to the freezer, which usually means getting ice cream.  I am in the living room,  a half-wall away.  He takes 10 minutes in the kitchen, first at the sink and then at the counter.  Lots of activity, drawers closing, implements being used, put down, taken up again.  I finally ask him if he is having some diffiiculty.  He says very quickly, "No, it's done now, all done." and I hear the sound of the celophane coming off the ice cream container.  I think it took him all that time to accomplish something he has been doing at least three times a week for years.  

He walks into the TV room with the container of ice cream.  No more words.  It's just 6 pm and he is done with his day.

I miss him every day.  A lot.