Tag Archives: caregiver

Reviews ~ Losing a Mind

Still Alice by Lisa Genova available for $7-18

Still AliceI was introduced to this title through a Facebook support group of folks dealing primarily with the various forms of dementia and primarily as caregivers. There are a few professionals in the group, as well as a few who have been recently diagnosed with one of the many forms of the disease. If you are a caregiver reading this I highly recommend the group. There are now over 20,000 members from around the world. This means that among the many quick little supporting hugs and prayers, you rarely have to wait long for a practical idea (or several) if you post a specific issue. Many members have contributed to the files section with information, books and suppliers. It is a place to rant, to cry to share funny stories, to seek advice. The group is quite diverse and not all things are for all people but that is what scrolling, hiding and even blocking are for. I lived in that group for several months and still visit when I feel I can contribute something of value.

It took me awhile to get around to reading this book. I tend to be more centered on nonfiction and direct application. I was, in the end, surprised and feel that it is a work well worth the read. Still Alice is not based on real events, it is a work of fiction. It is, however, well researched and the events and reactions within the tale are portrayed in an accurate manner.

Alice is a brilliant and sought after psychologist and linguist that begins to notice issues with memory, her sense of direction and general mental function. After losing her way and her thoughts far too frequently, she seeks the advice of a neurologist and is diagnosed with early onset Alzheimer’s. The story is a beautifully depicted tale of her decent into the disease.

I appreciated this book because it brought out several issues directly related to Alzheimer’s, such as the chance of inheritance of the related genes and how to be tested. It also brought out the very real issues with dementia and the problems of caregivers. For instance, it is not an issue that you forget where your keys are, the issue arises when you can’t recall what a key is. Getting lost is one thing, but staring at the same street signs you have seen for years within a block or two of your own home and having no idea where you are – well that may be another matter.

Genova’s research is also evident within the plot line in other ways. We know that dementia can strike the brilliant as well as the average mind – simply “exercising” your brain is no guard against the disease. However, in the words of one of the doctors in the story, when someone spends their lives in active pursuit of knowledge, he or she develops multiple pathways to the same bit of information. When brain cells begin to die, there still remains pathways or pieces of pathways to the same conclusions; it just takes longer to get there.

This last is something that I and others noted in my husband. Until he became bedridden he pushed to learn. He was an active participant in the care that I and the hospice team provided. Perhaps he could no longer walk, but he would turn on the bathroom light when I would wheel him in. On more than one occasion his team would state, “He knows, you can see it in his eyes.”

We were not wishing it true. There was one instance when a volunteer was sitting with him and they were singing. I was in my office working. Suddenly I heard him say, “Oh, Shut up!” I flew out of my office to the dining room and leaned over to eye level. I told him I knew he felt like shit and I was sorry that was the case. However, he had never allowed that to make him rude in the past and now was no time to start. I left and returned to my office. Things seemed to calm down and later, when I went to the kitchen for something to drink, he motioned to me. Drawing me close he gave me a hug. No longer able to walk or take care of any of his needs and fast losing the ability to eat or drink – he still thought, he still reasoned, he still accepted responsibility.

The human mind is the most amazing thing. We know so very little of how it works, how it dies. It is way past time we learn how to care for and protect this most precious gift.

If you have any interest or connection with the world of dementia, give it a read. Through tears and chuckles I think you’ll find it worthwhile.

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Filed under Caregiving Backstage, My Bookshelf ~ Fiction

How to Storm a Castle and Bring Your Lady Home

Well, this week we are back on a personal note exploring the interesting paths and passages of life with dementia. It has been a week of could-have-beens and what ifs and yet, well, I’ll tell you the story.

Castle SmallI’m not accustomed to sharing the intimate details of my medical history. I am not comfortable going into various details about parts I do or don’t have or how I happened to get to that point. My close friends do know of some of the challenges I face, but that is usually as far as it goes. This story, however, has that ever present caregiver component of “what do you do when.” Since there are now a number of people that look to me for tidbits of wandering wisdom, this appeared to be one of those opportunities where sharing the personal might help others in their own journey.

I was diagnosed with gallbladder disease somewhere around five years ago. At the time, we were living in Canada, and, although I could have had the operation at no cost to me, well, you have to be in acute stage to get there. Since I’m not overly comfortable when people want my body parts – however damaged they may be – I worked pretty hard at avoiding things that would stir up the dragon living deep within my stomach. As the situation with my husband became more defined, I began to wonder what I would do if there was an emergency. There is no way that, “bring me the cell phone,” or “call 911,” or various other possibilities were going to get anywhere. So I determined that I would try to learn something about what “acute” meant and do something about it before I was left writhing on the floor attempting to communicate with a disoriented spouse.

But, then, life gets in the way and you figure that, “it’s not really that bad.” That brings us to last weekend. It seemed like I couldn’t eat anything without starting that dull, achy, half-sick feeling. And it took hours for it to go away. Tuesday we headed off to the store to pick up needed groceries, and I looked for things I had learned help, at least sometimes, lower the impact of a gallbladder attack. Arriving home, he was sure I was mad at him, and I had to convince him that wasn’t the case. I think he was concerned that he wasn’t helping enough, which was far from the truth. An hour later, none of my tricks were working; it was time to have it checked.

Now, as my friends know, routine reigns in our home. It is the way we work though each day with relative calm and there has to be a really good reason to disrupt it. After an hour of listening to that naggy little voice in my head, I finally told him we were going to have to go “to hospital.” I wasn’t feeling well, and we needed to check things out. I doubt he could get there on his own, but he does recognize the route. He was terribly concerned about who was going to drive us (that would be me, dear) and he was worried about me and how I was feeling (understandable, this sort of thing doesn’t happen all that often). We managed to arrive at Urgent Care and take our place in the queue.

As you know, these sorts of visits are not quick. Which is why I prefer making appointments for him – he gets terribly impatient with it all. For me, however, he was willing to sit and wait. And wait. While I got a bit better. In fact the PA, not seeing immediate symptoms, was not sure what the benefit of an exam would be. He decided a poke or two would not be wasted.

Ouch!

Hmm. Maybe a sonogram would be a good idea. Well, evidently it was.

Now the whole game plan changed. I wasn’t going anywhere. Period. They were discussing options that would help me with my spouse. Like check him in and give him his evening meds and bunk him with me. Might have worked, except that hooked up to IVs, blood pressure monitors and other paraphernalia it’s a bit difficult sprinting down the hall to see what has become of your spouse.

Plan B. I called his companion fellow and arranged to have him picked up and taken home. Preview of what might have been. Hopping up and down a number of times, hubby kept looking for someone to take us home. He knew his “friend” was coming, but why couldn’t he be there already?  It was slowly dawning on me that he was certain he needed to take me home. We were waiting for our get-away ride. Well, dear, they want to keep me.

Things are a bit blurred after that. Other than the obligatory phone calls to various folks with a “need to know,” instructions to companion person about what should or should not happen in the next 24 hours, scurrying medical people finding a place to stick me overnight. Sigh. At least it wasn’t some massive emergency with ambulances, lost husbands and clueless medical personnel.  Object lesson here: Know what your backup plan is and make sure there is at least one individual in the world that your loved one is willing to trust.

It is the next day that I was again reminded that my dear spouse was, at heart, a knight. I had called home in the morning to check on things and make sure that the night had gone smoothly. Things were a bit out of order, but all in all not bad. During the day, I made contact once or twice. Evidently the only way my dear knight could be distracted from my whereabouts was to take him for a drive. A long drive.

When they returned home I’m told that he was certain I had gone across the street. Off they went on a walk to try to identify which house I might have disappeared into. This is not a surprising development. There are many times when my alter ego has gone off somewhere and left us with no news of where she is going or when she might return. He is certain she goes to a house somewhere near (after all, the car is still here), but evidently he wasn’t sure enough to press the issue.

Back in the house again. This time he is adamant. I do not need surgery; he is going to the hospital and he is bringing me home if he has to walk. Well, short of strapping him down in a chair, what is the poor caregiver supposed to do? Off to the hospital they went.

I am forever discovering the most interesting twists and turns in my husband’s mind. Even battling dementia, he still manages to find solutions to problems he considers critical. Finding me was one of those problems. It’s my understanding that when they arrived at the day-surgery unit at our clinic they were, at first, denied entry. I’m not sure of the details, but evidently the moment the gatekeeper had his attention elsewhere, hubby was through the door and trying his best to ask for me. Close on his heels, his companion was, of course, far more articulate. With the countdown to surgery already started, my husband and his “buddy” suddenly appear at the foot of my bed.

He was so happy to see me. So concerned about how I felt (I probably looked rather pathetic) and needing, desperately, to help. The staff was wonderful and agreed that the two of them could sit in my little cubical and await my return.

When the world came back in focus, he was again the helpful gent.  Holding things, handing me juice, holding my hand, and helping me dress.  How far back into his mind did he need to reach to show the support he had in so many other circumstances to be the protector, my knight?

The rest of the story is pretty much your normal victorious return home from quick and dirty surgery. Hubby’s companion stayed with us over night then went on to other things with the assurance he was available if I needed help. Through a friend, I located a couple not far from us that could retrieve my car.  That, of course, was another relief for my husband.  Abstracts are not his forte, and I couldn’t explain where it was or why.

Credit NASA Hubble Star Collection

Credit NASA Hubble Star Collection

My beloved husband has been attentive, concerned, and caring. He has been helpful when we run into “bending” or “lifting” activities. No, he still can’t keep track of who I am for a whole day and I have to remind him several times a day it isn’t a good idea for me to drink wine just now. But I do know that even when he can’t keep track of who I am, I am still somehow his northern star.

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Filed under Caregiving Backstage, Personal Journeys

Reflections ~ When Did I Learn Not to Cry?

newpath2Yes, I know it has been a bit since I posted and, well, there really isn’t any excuse.  I did write a guest blog for my friend Stacey Brewer.  It appeared here on her site as part of Blogging from A to Z.  It was a fun post and generated feedback for both of us.  Other than that, life just got in the way a bit.  That, of course, brings me to this post.  One that it appears I must write or my head will not move on to other subjects.

As of this month it will have been two years since my husband and I visited Vancouver Island.  For those of you who have read my book, Who I Am Yesterday, you will know that this was my “moment of awakening.”  It was during our trip to the beautiful Canadian coast I was forced to realize that my husband would never be the same again; his dementia had become a full-blown reality.

Who I Am Yesterday is about my journey during the first year, more or less.  I describe some of the things I have learned that work for us, for me.  It also draws out some of the feelings I had while I learned to deal with this changed lifestyle; and how I conquered fear, sadness, frustration and a myriad of other emotions.

Those of you who visit my Alcove may have also read a blog or two or a poem or two which describe my continuing journey.   It has not been easy and there are many times I wondered why I thought I could handle the many aspects of caring for someone whose world no longer resembled the reality most of us live in every day.  It is difficult learning and internalizing that a person with dementia lives in a reality which changes with every passing minute.  It is, however, reality to them.  This, then, is what we will call an anniversary piece.

When last I wrote on the subject I explained what I had learned about how the mind affected by dementia “sees.”  In that piece, “Do you see what I see, do I see what you see, is it really there?” I explained some small part of how the brain works.  Although I have had access to a great deal of the information for some time, this was a moment when it really sunk in.  I somehow knew how he saw the things he did, even if I couldn’t.   At the time I mentioned that I wasn’t sure if it would give me answers for him or solve the problem, but that it did help me develop a bit more patience.

As it turns out it really was an epiphany.  This moment of insight lead to a point when so much of my frustration, anger and pain, well, released.  I know this is true because I have learned not to cry.  I still get emotional, my eyes will well up, I take deep breaths; but I don’t weep.  There were, after all this time, still some conversations (confrontations) that would turn me into a total basket case.  And now, well, they are just part of the day to day happenings that one must deal with.   Here is the story.

There appears to be a high probability that my husband dealt with some form of schizophrenia most of his life.  There were people that lived in his mind and nowhere else (or somewhere other than the present).  However, now he no longer has the faculties to keep these mentally constructed worlds separate.  As mentioned in my book, the walls in his mind are breaking down and he can no longer successfully tie a person to an event with any regular accuracy.  Most notably me.   When I began to internalize how he perceived the world and the people in it, I became far more tolerant of all these “extras” in our lives.

This is meaningful because now when he asks me where “he” or “she” or “they” went I come back with “You and I are the only ones here. I took you to the store, I cooked dinner, and I have been in the office all day…that was me.”  He is confused, and I must repeat, but there is a difference. He appears far calmer than he was when I would get gradually more frustrated and finally declare that I didn’t care who they were.  They didn’t belong here and I really didn’t care where they were now.

When you think about it, calmly explaining that things are as they should be and reassuring the individual that things are under control is far better than flying in a rage and screaming you have no idea who these people are, where they are or why they were here.  Now, however many times it takes, I carefully explain who is here, was here and did what.  Eventually he will quietly say, “I see.”   3…2…1 – “but where did he go?”  And so we start again.

The next lesson was harder.  Even more so because it was a lesson I had to learn earlier in life and seem destined, somehow, to repeat.  It’s not my fault.  There is a scene in Good Will Hunting when Sean Maguire (Robin Williams) tells Will Hunting (Matt Damon) a number of times, “It’s not your fault.”  At the time Maguire is looking through Hunting’s case file which shows the abuse he received from an alcoholic father.  “It’s not your fault.”  I cried when I saw it; I too had to learn, “It’s not my fault.”  Here I am again, learning the same lesson.

On occasion, when things would get intense between us and the agitation would build, he would declare he didn’t belong here, he would have to find somewhere to go.  This conversation might have started for any number of reasons but it often escalated because I didn’t have the time, or sometimes wouldn’t take the time, to focus on whatever his issue of the moment might be.  After repeating myself for a number of times I would run out of patience.  Things would end with me walking out of the room announcing that he could let me know when he found someplace to stay.  This is basically a kick in the teeth to someone who controls little or nothing in their own lives.

From his point of view, if things weren’t working he’d best move on.  Logically I knew he did not have any way of locating a place or of getting there.  There were even conversations with his eldest son about whether or not there was room for Dad in their home.  Gently, it was explained, no there wasn’t.  I usually tried to prepare my stepson for these conversations whenever I could.  His unbelievable patience was always there reassuring, but firmly saying no.  He helped keep things reasonably calm on a number of occasions.

I believe that another aspect of “this place” is his firm belief that there are all sorts of people that come and go.  One night he had me in tears from giggling because he was turning the bedroom upside down looking for pillows for me.  The ones on the bed were used by that other lady and he did not want me to be without.  He had even arranged the pillows on the bed to leave room for me next to him.  I found some pillows in a closet and let him know that if I got to bed and needed some, I knew where to find them.  He was finally able to settle down and go to sleep.  It was all I could do not to laugh out loud but I thought it was terribly sweet that he was concerned that all of his ladies had pillows. More importantly, if I saw that many people coming and going as they pleased, I guess I would want to move, too.

That, of course, was part of the key.  It wasn’t me he was running from.  In fact, there were times when he made it clear he wanted me to come with him.  He wanted to leave the ghosts in his mind behind.  He wanted to find a place where he had more control.  No, it was not my fault:  and suddenly the sad tears went away.

There are still times when I have to get very firm and a bit agitated to get him to break off from a subject.  Especially if there is absolutely nothing I can do at the moment or I am on the phone or trying to meet a deadline.  There are times when I get the definite impression that I am not me; so I quietly separate myself and let him work through it.  He is always glad to see me when I come “back.”  I do not expect things to suddenly seem just fine.  I do know that things are a lot less wearing on me and that does count in the dance of care giving.  It does, however, hurt far less because it is no longer personal.  It is part of who he is now.  I still have the moments when, near to tears himself, he tells me he loves me and doesn’t want to lose me.  To the best of my ability I intend to make sure he doesn’t.

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Reflections ~ November 25, 2012

If I could
chase away
the watchers
in the yard
the voices
in the night

If I could
drop everything
fix the phone
fix the bookcase
find your friends,
make it work

If I could
find the lost
you can’t describe
move the things
you never saw
put it back

If I could
say where she went
where he went
why we’re here
and not there
wherever there
might be

If I could
know what
you’d eat
what you won’t
what you’d wear
or not and when

If I could
I’d change
your world
give it shape
and harmony

I’m sorry, love
I truly am
I only wish I could

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Filed under Caregiving Backstage, Personal Journeys

Reflections ~ November, 2012

I saw his eyes today
The fierce love of life
The constant challenge
To the God he loves
The unending wonder
The intense love of me
I saw his eyes today
Then they were gone

 

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Filed under Caregiving Backstage, Poetry

Who I Am Yesterday, now available

Who I am Yesterday is now available through the publisher: https://www.createspace.com/3843895

The book and the Kindle version are also listed on Amazon.com.

To clarify for all my Canadian fans:  The book will not be listed on Amazon.ca for various reasons, some apparently rather obscure.  I noted some other books I am familiar with on that site and the prices are really out of line so I wouldn’t want you to pay from there anyway.  I am assured by the publisher that you can purchase direct from their website (noted above), or nearly any other Amazon site in the world.  I think Japan is another one that is not available (just saying).  So, it’s quite a jungle out there and you should take your compass with you!

Thank you, sincerely, for all the support I have received in the journey and the sharing of it.

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Filed under Authored Works, Caregiving Backstage

Entering the arena

The book has been released to the publisher.  My understanding is that it will be available to the market within the week.  I will, of course, post all relevant information as soon as I have it.  There will be a Kindle version probably early July.

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