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.