We were sitting on the deck with Don and Edie, who had called and offered to bring supper over — we accepted and invited them to stay and eat with us.  I was making a point about something, but I had one of those lapses, when I couldn’t think of the right word to complete my sentence.  Mary Ann finished my sentence by adding the word.  This is the same Mary Ann who has had Parkinson’s for twenty-two years, who has been diagnosed with Parkinson’s Disease Dementia and can hardly get an audible word out of her mouth.

Exactly who is it in this household who has memory problems? I certainly hope other Caregivers sometimes struggle with memory problems.  I would hate to think I am the only one.

A few weeks ago I was trying to remember the birthday of one of my brothers.  I knew it was sometime in the end of May and that my Sister-in-Law has a birthday near his.  I asked Mary Ann in one of those times when I was not anticipating an answer from her.  She said May 25th.  I assumed, since she has Dementia, I could not accept that as the final answer.  I called one of my Sisters.  Dick’s birthday is May 25th.

Why is it that sometimes Mary Ann’s memory is better than mine, and she is the one diagnosed with Dementia.  I wonder how many other Caregivers sometimes worry at just how often we forget stuff.  When the Caseworker comes by for the annual assessment visit, at a certain point he always gives her four words and asks her to remember them so that she can list them when he asks her again.  I am so grateful that he doesn’t ask me to repeat those words later in the conversation.  Of course I repeat the four words in my mind the entire time he is asking her other quesitons so that I can feel superior when I remember all four and she only gets two or three of them. If I had been forced to pay attention to the questions he was asking after listing the words I would not have had any hope of remembering the four words.

I recognize that stress can impact a person’s capacity to remember things.  I have used that rationalization a thousand times.  I understand that memory loss due to attention problems is a normal part of aging.  There is a unique character to the memory loss that is the result of Dementia, but I have forgotten what it is.

Actually, I just cheated and checked online to see if I could find something to help distinguish the normal memory loss due to aging and the memory loss that comes with dementia.  Forgetting how to do things that you have been doing for years is one.  Forgetting how to get someplace you have gone to often is another.  No longer being able to follow things that are done in steps, such as following a recipe is another.

One of the reasons that I have developed so many routines is that routines help me get things done that might be forgotten if the routine didn’t automatically lead me to do them.  I turn the medicine bottle upside down when I take my daily Synthroid so that I won’t take it a second time thinking I hadn’t yet done it.  I alway use the remote to lock the doors on the car rather than the button on the inside of the door.  That way I am far less likely to lock my keys in the car.  I have to have the fob in hand to lock them.  Of course, I keep a list of all the things I need to do.  If a new item comes to mind, I have to write it on the list immediately.

I guess I cannot know for sure if my memory loss is normal.  I think it is within a normal range.  I hope so!

I don’t think I am the only Caregiver who wonders sometimes if he/she is suffering from serious memory loss.  As Caregivers, we can see how devastating dementia can be.  When we can’t remember things, sometimes it scares us.  If we have a problem, who will care for our Loved One?

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

It has been some time since Mary Ann has told me she was seeing the two parents and two children in the house. I thought that hallucination had subsided with the last increase in the dosage of a medicine intended to control the hallucinations (Seroquel).  Today she told me that she wished that the Thursday people would stop coming.  I asked and she confimed that she was talking about the family she sees sometimes at our house.  I asked if she was scared of them.  The Neurologist always asks if the hallucinations are scary.  She answered, “I just wish they would go home.”

We returned from our vacation last Friday evening.  It is now Wednesday, and the hallucinations, the daytime napping, the fainting, the confusion that often comes during recuperation from travel are still continuing.  The recuperation this time seems to be taking longer than in the past.

With Parkinson’s Disease Dementia (a Lewy Body Dementia), people can move quickly and dramatically from a time of confusion and all the rest of the increased symptoms, to a time of crystal clear thinking.  What is always uncertain when symptoms increase is if the person will return to the normal that preceded the episode or stay at the new place, settling into a new normal.

What has often happened in the past is that when I have reached the point of concluding that she has declined to a new level, have emailed the kids and maybe our extended family and friends, reporting the decline, the next day, she has rallied and returned to clarity of thinking, the former alertness and the capacity to stay up most of the day.

Maybe tomorrow will be a better day, but maybe it won’t.  One of the fears of this and other Caregivers is that they have witnessed a permanent move to a lower level of functionality, another sign of the disease heading farther along the path toward its ultimate conclusion   One of the signs of the progression of the Dementia is daytime sleeping.  Some reach a point of seldom being awake.

The fears that come with Caregiving are legion.  What follows is a litany of some of those fears in no particular order:

Sometimes when Mary Ann’s Parkinson’s medicine kicks in, she breathes heavily and the breathing sounds labored.  Arms and legs are waving.  Often she has a hot flash at the same time with sweat poring off her.  It seems as if she is just going to explode.  It seems impossible that her heart can take it.  Sometimes when she walks ten or twenty feet the labored breathing starts.  I am afraid a clot will break loose from a heart blockage and she will be gone in minutes.

Whenever we are in a place that has tables or desks with sharp corners, having seen her fall countless numbers of times, I fear that she will get up and head off quickly, lose her balance or faint and hit her head.  She has fallen and hit her head.  We have had trips to the Emergency Room.  The fear is justified.  We have removed almost everything in out home that she could fall on and do serious damage.

She has had one stroke already.  She could at any time  have another.  There is a lesion on with a rough place on it in one of her carotid arteries.  The next fall could be her last.

When she is in a deep sleep and has not moved for a long period of time, I will look closely to make sure I can see some movement indicating that she is still breathing.

There is the fear that the time is likely to come when I cannot care for her at home.  Each decline brings that potentiality closer.  The thought of a nursing home, even a nice one, is intolerable.  I respond to her every need.  I can read her non-verbals.  I know the way she thinks.  No one else is going to give her the constant attention she deserves.  I have great respect for those who work with the aged and infirmed.  It is still a harsh reality that there are too few caring for too many, especially at night.

Then there is the strain on the Caregiver who travels back and forth to the Nursing Home, some spending most of every day there with their Loved One.  I have read posts written by many who are completely worn out by the demands of attending to their Loved One in a Nursing Home.

There are fears about the financial drain of Caregiving.  If there is to be long term care (try getting long term careinsurance for someone diagnosed with Parkinson’s at age forty-five), the division of assets demands drawing down a life savings.

Caregivers fear getting hurt.  If I end up in the hospital for any reason, what will happen to Mary Ann?  When the ambulance with me inside it leaves the house, who will take care of Mary Ann.

What will happen to her if I die first?  Years ago when there was some misinformation that suggested my heart was about to give out, I remember coming to a very peaceful acceptance that my life has been filled with meaning and purpose and good relationships, my children have grown to be better people than I could ever have hoped (there were no grandchildren yet when this happened), my faith is strong and secure.  It would be okay whatever happened.  As a Caregiver, the fear is not so much a fear of death but the impact of that death on others,  In my case, it is Mary Ann. It is the impact her needs would have on our children.

Then there is the selfish fear.  If she goes first, what will I do without her.  I fell in love with her in the summer of 1962.  You do the math.  In terms of human relationships, she has been the center of my world for all those years.  Our marriage has been far from perfect, but we have hung in there with one another and would prefer continuing doing to do so.

Caregivers have fears!  We can pretend otherwise, deny them, ignore them, or accept them.  We can be destroyed by them or live well in spite of them.  Which we do is a choice we make.  What makes sense to me is to look at the object of the fear and make plans for what we fear becoming a reality.  Do what we have the power to do in preparation for each contingency, and then get on with life.

The truth is that we all have fears, no matter what our circumstances are.  Each of us must choose how we will live.  Will it be with terror or with peace in our hearts?

For me it is a quiet trust in a Someone whom I believe to have constructed me and sustained me that allows me to live in peace.  The peace is a gift from that Someone.  I don’t deny that I am sometimes afraid.  It is just that the fear does not define me and rule my life.  I choose the peace.

For Caregivers who do not look to someone outside themselves for peace, peace can still be found.  Facing the fear, stepping back from it, doing what you have the power to do and recognizing the limits of your power free you to settle back into the life-generating core of your being.  It is a sort of reality therapy that provides healing.

Caregivers’ fears are legion.  They are rational fears.  What they fear may happen, may happen.  Even in the face of their fears, Caregivers are free to choose peace.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.