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.

having your own quest

...a revision of a letter I once wrote to my friend and fellow caregiver, Kate:

One evening at my camera club meeting, three members who had recently been chosen to be in a juried show talked about their work.  My favorite speaker was a man who passed on to us something his mentor had told him.  He told us to look less for the "postcard image", and instead to seek out "precious light".  "Take photos in that light," he said, "even if the photos are of a bubble gum wrapper on pavement.  Get to know 'precious light' and how it works--until your response to it is automatic.  You can then go back to looking for compositions.  Your images will never be the same after that."

Since then, I have been thinking about "precious light" and how I will know it.  He assured us that we would know it if we set out to look for it, but I fear I won't be able to see it.  One day, I suddenly remembered one of my favorite passages from Annie Dillard's "Pilgrim at Tinker Creek", in which she, too, talks about the importance of light.  A paraphrase here, in which she encourages being aware of light: "You cannot cause light, but the least you can do is put yourself in its path".

I'm mentioning this because I am thinking two things about these two pieces of advice.  First, at this point in my life, it would be good to quest for photographic "precious light" if only to provide a focus outside the other concerns of the day--a worthy and absorbing distraction.  Caregiving is hard, hard work.  It can consume you. Second, the advice strikes me as a good metaphor for all of one's life.   I think that in order to endure, we caregivers need to remember our own need to pursue some kind of "precious light"--some place or activity or practice that bathes us with nurturing and renewal.  

We cannot neglect that and expect to remain whole.

a ceremony of losses*

LOST:

balance              eyesight          comprehension          

patience              glasses               joy                                       

keys           phone            remote

travel in retirement     driving ability       sense of direction

crossword puzzles    ability to tell analogue time     

stamina         wallet           glasses

reading       bike riding         swimming

memory        farmhouse         freedom

glasses

ability to understand electronic gadgets

socks     dialing a phone     writing checks

talent in fixing or building      wife's carefree spirit

electronic chargers       playing sports         shoes

magnifying glass       hat          gloves      

spontaneous movement             glasses            vitality

confidence          judgment             career 

everyone's phone number      self determination

distinction between freezer and refrigerator

horsing around with grandkids

cribbage     backgammon         independence 

directions for everything     (can't read them anyway)

speed      hiking        trust in own abilities

operation of thermostat,    oven,      dishwasher    

fluency         words         story telling.....

         

...his remarkably quick and lively mind.

*  Fragment of a sentence in the memoir,  "Out the Window" by Donald Hall 

in The New Yorker Jan 23, 2012

everlasting adaptation

A journey with dementia is a long, difficult series of adjustments to a new 'normal'.  Just as the old saying goes, "Want to make God laugh?  Start making plans",  there is a truth about living with dementia that sounds something like, "Want to make sure something is going to change soon, and not for the better?  Start thinking you've figured out how to deal with things as they are, and that life is now stable once more."

It's not an evil consequence of cocky assurance.  It's just the way it seems to be.  There always seems to be a new loss just around the corner.  A new reality to figure out how to deal with.  A new mourning.  A new adaptation to make.  This adapting eventually leads to a new 'normal'.  Which, in turn, morphs into the next loss.

Sometimes the losses tumble into one another, stacking up before old crises have been resolved.  Those are the really difficult times.  Those are the times of fear and anger, panic--and thoughts of just running away.

As dementia has made itself comfortable in our life, setting up housekeeping and leaving its socks on the floor, it seems that the losses and consequent need for adaptation come faster, and deeper.  

It sometimes frightens me when I begin to notice something which would have formerly sent me into a tailspin, and I respond to it with a kind of calm purposefulness that says, "OK, what do we have to do to learn to function in the presence of this?"  Don't get me wrong, it is a far better place than days of frozen fear, feeling helpless, crying buckets and hiding in bed all day.  But it feels as if I have lost some feeling, sometimes.  Become numb.  Can't locate emotions appropriate to the situation.  

I am a counselor of over 40 years, so I 'know' some things that are nevertheless at times difficult to see in myself, or to apply to myself.  I 'know' that the dementia dance is a marathon.  I 'know' that a person can't function long-term in a place of panic and despair.  I 'know' that for the most part, we humans eventually adapt to what is placed before us in life.  I emphatically don't believe that things happen for a reason.  I do, however, believe that what happens to us can most of the time be borne, although it almost always takes some growing and a lot of change.  All that 'knowing', however, doesn't help the concern I sometimes have regarding my diminishing emotionality.  I fear I might be losing  something crucial to my central self.  I wonder sometimes if it means I don't care.  I wonder if I will continue to numb, until I can't feel anything anymore.

My daughter once drew me into a new way of considering this necessary numbness.  As I was off on a fear trip of losing touch with my feelings altogether, she asked me how I reacted to my grandchildren.  Did I react with feeling in response to them--their actions, their growth, the sound of their voices, their very being?   Thankfully, my answer was, "yes, yes, yes, and YES."  Ok, thought I.  Point well taken.  

I still have my feelings.  They are still there.  But I guess I am learning to protect myself from the pain of dementia, because it is a necessary thing.  It helps me to put one step in front of the other.  Helps me to keep on keeping on, as the saying goes.  Enables me to be a more loving, functioning presence in my husband's life, so that we can walk down this path together and he is not alone with his own fear and loss.

Don't get me wrong.  I cried just yesterday while thinking about  dementia and our losses.  The difference is that my feelings are controlling me a little less as time goes on.  

Where are you, or have you traveled, on this path?  Do you, sometimes, worry about becoming  numb?

credibility

One of the most difficult and painful aspects of the dementia experience for me has been the frequency with which others' assessment of my husband's functioning is in deep contrast to  my own.  To put it succinctly, "He looks really great..."  Or, "He doesn't seem confused to me."  Or, "How can you think he has memory problems?  We had a long conversation today and he seemed quite sharp to me."   Or, "I haven't seen that in him."

I've met these comments with deep ambivalence.  

On the one hand, I am delighted to learn that my husband has been able to have a normal interaction.  That he was able to keep up, use his memory and intelligence and charm as he wants to and always has.  That others are not embarrassed or wary of being in his company.  This means he won't be isolated, because isolation is not good for anyone, and those with dementia are no exception.

On the other hand, there has at times been deep pain in hearing these remarks, particularly when they come from loved and trusted people.  I've worked hard to remind myself that they might well come from simple kindness--wanting to minimize or not call attention to those things they did see, but don't want to pain me by remarking on.  Or it might come out of their own difficulty in acknowledging the decline of their dear friend or relative.  These reactions are real to me--they mirror my own inner dialogue.  I don't want to see what I notice, either.  I don't want to accept those losses, the little deaths.  So, we look for the positives.  The things that are still there.  And try to find joy in that.  

I believe that positivism is good.  Very good.  I spend a good portion of every day in a positive place.  And yet....

And yet, there is a part of me that has needed very much (and still does) an affirmation of the things I see every day.  Someone who will say, "I notice what you notice."  "You are not making things up."  "You can trust your observations."  "How are you doing with this?"   "It must be hard, do you want to talk about it?" 

Otherwise, I can feel more than a little crazy.  I've doubted myself.  Wondered if I am exaggerating.  Felt I am being passively unkind to my husband.  Felt guilty about being disloyal.  (Disloyal is big.)

But mostly, crazy is what I have felt.  

As time has gone on and my husband's deficits have become more apparent, I feel less  self doubt about my observations.  I find some affirmation in what others notice.  Time has taught me that what I witness when we are alone is real enough.  How he is when he is with others is always the product of considerable energy on his part.  He works so hard at normalcy.  He can pull it off for short periods.  Other people don't know that he goes home--or gets in the car--and falls asleep instantly.  That it sometimes takes him days to 'recover' from being sharp for a sustained period of time.

No matter how much more difficult it is for him to hide his advancing losses, others are still several steps behind me in what they see.  It's hard to get used to that.  I battle the self doubt still.  And the conflict between wanting him to show his best side, be connected and happy, and the real need to be affirmed in my experience of him--it's still there.  

Thank goodness for the few people in my life who 'get' it.  They have kept me from the funny farm. 

mystifrustication

It took me all day to set this blog up, good people. I'm a bit fried as a result, but wanted to start with an initial post.  What follows is an old entry from what I call my Dementia Diary, which I have been keeping on and off for years.

  

I'm glad you stopped by, and  I'm glad I finally put this together.  I aim, as this post I hope demonstrates, to portray my ongoing experience with honesty, feeling and a bit of humor when appropriate.  Here's an example from several years ago.

"September 30 2008

Report from Planet Braom Omkiru   

...fingers on keyboard.  Right hand one letter off to the right.  “Brain Injury” becomes "Braom Omikru."

A perfect metaphor for what it is like to live with Brain Injury--signals scrambled, things don’t look right, best intentions go awry.  Mystification and frustration balled into one.  Mystifrustication.  

I’d write more but after a 13  hour day with only a one hour quiet time, I want to go to bed.   More detail next time.

sincerely,

Ms Tifrustication"