Martha Eischen has been there. Over the course of ten years, she was responsible for her mother's total care. In Mothering Mother, she shares not only her perspective, but also practical advice and valuable resources as she leads other caregivers-both novice and experienced-down a road of compassion and complete understanding. Martha shares a deeply emotional story as she details her mother's end-of-life journey and how she, in turn, learned how to provide personal care, partner with medical professionals, and deal with altered family dynamics. As she describes her life as a caregiver, she clearly identifies emotions, changes in roles, keys to keeping her mother active, and day-to-day care issues.
Mothering Mother is a loving, encouraging guidebook that will help caregivers everywhere fill the last days of a loved one's life with love, security, and fond memories.
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Mothering MotherA Daughter's Experience in Caregiving
By Martha Cooper Eischen
iUniverse, Inc.Copyright © 2011 Martha Cooper Eischen
All right reserved.
Chapter One1. The Certainty of Decline
Just as no parent is prepared for the first child, so neither is the caregiver prepared for the duty of caring for a declining loved one. No matter what you read or hear, or whom you know who's been there before you, you likely can't be prepared for this task. You will often feel uncertain, unprepared, inadequate, and unfit. It's OK! You just go on. Trip over your mistakes, and feelings, and just go on. This duty is underscored by love and has a loving Teacher.
None of us is fully prepared to believe that our loved one is slipping, especially slipping enough to be scary. But, no matter how smart she is, she is slipping. The first incident that concerned me was before mother had suffered any catastrophic events. I had sent her to the bank to make a deposit in my account. She simply forgot what my errand was about. So, she took the check and put it in her account. When I asked her about the deposit, she said she couldn't remember what I wanted her to do, so she put it in her own account. That's even after I had given her a deposit slip! That sort of incident may seem small to some folks, but it was a huge flag to me, for mother was simply too big a powerhouse to have made such a mistake, even at eighty-seven years of age. So, the evidence was clear before the adverse winds began to blow in her face. It can take months or years to develop symptoms, and so it can be equally as long, or longer, to get beyond the denial that those symptoms even exist. First you are shocked at some of them - simple things, reversions to childish likes and dislikes, changes in taste. It often starts with food preferences. (And this from a mother who would never have exhibited any inclination other than to finish the half-eaten leftovers from her children's plates, so as not to waste an ounce of food!) They are only the beginning. And they may last for years before any other symptoms appear.
So, life is changing — forever, not all at once, and not without many upswings. But the general trend is down, not up. My nephew, who is a physician, said rather casually, "It doesn't get better." What a light bulb of wisdom! If you can absorb that for all it says, you will be way ahead of the game. It was not meant to be a discouragement. It was meant to help. He considered it an honor to care for his ailing grandfather. I consider it the same, and more, as I care for Mother Love. I am encouraged and strengthened by that simple statement, as I face each new circumstance. There is a clear difference between training children and your declining loved one. When you are training children to stand up straight, or walk, or helping them to remember some event or person, unless they are impaired in some way, they will "get it" and go on to the next level of learning. Your loved one is declining. So she may or may not get it at that moment, and most likely, at some point, will not remember the next time. So for you, it will be a matter of progressive reinforcement. Some days will be better than others. The more rest she has, the more alert she will be, and then the better her retention and response.
Beyond the denial, there is finally acceptance. And this cycle will go on, for each thing that happens. There will be denial - an attempt to get beyond the new event, an attempt to get rid of it, or straighten it out, or correct the problem. That's not all bad. I try to challenge mother, at every turn, to achieve or perform as she has in the past, recognizing that the time may be here when that particular thing is no longer going to happen as it did in the past - the acceptance.
And so it will go, for every thing she does or slips from doing - denial, acceptance. Once you get used to the big changes, and accept them, it does get easier. One element of the denial, which makes it hard to let go of, is that there is a measure of shame that attaches to the acknowledgement. "I can't believe that my mother is doing that." The connotation is that it is OK that your mother may be in that place in her life, but not my mother! You start out answering for her, explaining for her, covering for her, correcting her. All this will fade slowly. She is where she is, and you need to accept it, loving her through it. What you do want to do is protect her dignity! That's not the same thing as protecting your dignity. She needs your undying support and protection. You can appropriately cover for her and shore her up in many ways that no one else will recognize. One simple example is recognizing people. It is very easy to say, as the person approaches, "Oh Mother, here comes Greg" or "Mother, you remember Greg," giving her the chance to pick right up and say, "Of course", not skipping a beat, and not needing to be embarrassed for a second. That's love in action!
This subject of facing the reality of decline is packaged in our own fears and other untapped emotions. So, for your own sanity and each other's peace, it is wise to assume that no upturn is permanent, but downturns may be. Hence, I reward her with encouragement when the good things happen. She needs the pat on the back.
This is a particularly vulnerable time. It is easy for her to feel abandoned, to have some sense of, "I'm no use anymore," or "I don't want to be any trouble." Even if she can't articulate it, fear, panic, and frustration are not uncommon.
Understanding this notion of decline helps prevent me from making unrealistic demands on her. It keeps my expectations realistic, preventing immense anxiety, which would affect my performance. I need to be "up" as much as possible — mentally, emotionally and physically.
Allow your understanding of the certain decline to be your strength. Keeping it in focus will keep you in reality.
This is a roller coaster ride. So, strap yourself in, say your prayers a lot, listen to others, read the pamphlet pearls which I resisted, and face each day with the best you have to offer. That's all you need. As my mother still says, "Just take what comes to hand." Simple, sage advice, from a tower of love! Each day, a new beginning and just one day at a time!
Dealing with Dementia
All the charts in the world, illustrating the brain before and after such events as stroke or Alzheimer's, cannot prepare you for the journey with the demon, dementia. There simply are certain facts about the loss that can only be explained in laymen's terms, by those who have experienced them.
A little diversion for a moment may help to fashion a picture of the mind. While very simplistic in its explanation, it helps to understand. In today's technological age, we can liken the brain to a computer, which was indeed designed to emulate it. RAM, or memory, is the short term work space where you process all the things you are doing right now, for instance reading e-mail, writing a letter, getting on the Internet. Whatever you are doing right now, is being processed in RAM. The second kind of "space" is called storage, or disk space. It is here that all the history of what you work on in RAM is kept: the last spread sheet you used, your bank records, or your family photo album from the last vacation, etc. Whenever you want to see the pictures from the trip, you simply call up the saved images and view them on your screen. Presto! The brain is much the same. It keeps things stored from the beginning of its life. Then those things are recalled frequently throughout life, as they are needed. When you recall things from your past — one minute ago, or fifty years ago, there can be a short circuit between the memory that thinks cognitively about what's going on here and now, and what is being brought back from "storage". That short circuit can cut off everything, or things from recent experience, like the last phone call, or conversation. The inability to recall recent events is called "short term memory loss". "Long term memory loss" is the inability to recall things in the distant past, birthdays, historical events in your lifetime, familiar faces, friends or family.
The degree to which your loved one suffers from these losses is best measured by your own experience. No magic test can prove what you know already from your regular observation and interaction. It is variable and ever-changing within the individual, and frequently from day to day. "Everything changes. Every day it's different," a fellow caregiver said in dismay, one day. That is often true, especially in the beginning.
Some folks say, "I don't know whether I would rather have physical or mental impairment." But I can say that the challenges of coping with caring for a person suffering from dementia are enormous. They are as much emotional as physical. The caregiver probably suffers more anxiety and stress with dementia caregiving than with any other. The need to "straighten out" her thinking is perhaps the biggest hurdle between you and your sanity. You want to clear up the confusion. Let her know she's not in Ohio, where she grew up; or that she is in her own home as she speaks; or that her father has been dead for forty years, etc., etc! It is so hard to accept that no matter how much we explain, they simply can't understand, or at minimum, won't remember in two minutes from now. If they could, they would react accordingly, gladly. They do not know! Your being reduced to frustration, guilt, and dreadful fatigue just puts you down on the bottom of your barrel — very alone. You must be prepared for this, so that the feelings do not become ghosts, which regularly haunt you.
The descent into mental impairment is tragic for everyone. But it seems especially challenging when it involves one's spouse or someone who has been an intellectual giant and powerful contributor all her life long. Such is the case of my mother. The trap to try to get her to understand just looms overhead like a cloud all the time. In some cases, as is also the case with my mother, she knows she doesn't "get it". So for her it is also a constant struggle to keep in touch with what is really true. That struggle alone produces in her a fear far beyond mine, and one she cannot express. I simply see it in her eyes and sometimes in her mood.
Think how it must feel to spend all your energy just trying to keep things straight, sorting out where you are, who's who, what's what. Mother spends virtually all her time sorting out her life "in the moment", and what's happening around her. Sometimes the goings-on around her are far too much for her to keep straight. So the din just leaves her tuning out or, less frequently, getting irritated. Much of the time, she just wants to retreat to a place where she feels safe. That means being in familiar surroundings, with familiar people, doing familiar, routine things.
The more you can keep things the same the happier she is, and therefore, you are happy as well. You find that your peace and happiness are based on hers. If she is at peace and cheerful, so are you. So, with that in mind, I seek to find those things and circumstances that comfort and encourage her.
Of all the afflictions besetting the elderly, this demon, for me, produces the most stress. The roller coaster ride is relentless. You just get your steam back, when something else shoots you down. Often perfectly healthy physically, the mentally impaired, little by little, are unable to do some of the simplest, or most basic tasks. Feeding herself is a good example. One day she can sit in front of her food and not have a clue that she is supposed to pick up the fork and start eating. Then another day she will do it unprompted! This is not something that will get better. Be prepared that it is likely not just a case of some imbalance that you or your physician can "fix", and then all will be back to normal again. It is a part of the roller coaster ride, and you just accept each day with its limitations and surprise performances. Always encourage the performances, but accept the shortfalls, because it will continue, up and down.
Tricky Things — In Dementia
Repetitive questions, one of the biggest challenges, are a direct result of memory loss. At first, the repeated questions are not too terrible. You can tolerate them, and engage her in other thoughts. But the incessant ones are the challenge.
When the going gets tough, and she seems to be on a broken record, I try some tricks, like the following:
Change the subject Get another loved one on the phone just to chat. I call my sister or brother and just let her chat a bit, briefly, and then go on with what we are doing.
Suddenly do something else. The suddenness breaks the rut.
If all else fails, leave the room for a short spell.
Sometimes it is best to just go along with it. If she is fantasizing, go with it. One night she told me, with the sweetest smile, that she and my father, now dead eight years, had just been called to be the king and queen of Siam! Well, I can tell you, I got a star for my performance that night! I congratulated her and asked her if she was going to accept it, because it was a very hard job. She thought about that, and replied that she thought it would be best if she declined. That closed the subject sweetly, and off to bed we went. However, sometimes you feel constrained to straighten it out. This may or may not work. If it doesn't, drop it. It will go nowhere and drive you crazy. Try one of the tricks above. It will go away eventually. You just have to have several tricks up your sleeve, so you can live through it! This is without a doubt one of the most troublesome things to deal with. It'll fray your nerves faster than anything.
No matter what, however, I always speak normally to her, normal conversation. It is important to respect her ability to understand and respond. And, if she sometimes doesn't, I don't get upset. Pearls of wisdom still roll off her lips. I'm always learning about gentleness, kindness, and love from her at the most unexpected times. She is full of grace. She really does take everything, for the most part, as it comes. Therefore I honor her and talk sensibly to her. I don't pass her off as if her questions are irrelevant or out of order, even when they are! I expect the best, even though I know that a lesser response is realistic. I am always happily surprised when she has a very 'together' response to some situation or conversation. What a present joy! I take it for what it is worth — just that — a very present joy!
Sometimes your loved one seems to react totally differently than you would ever expect. Be prepared. There just are things about her that you never knew. Maybe her entire adult life she never displayed those personality quirks that she is now uninhibited enough to express, like being feisty or cranky when tired, as all of us can be! But she never was her entire mothering life, you say!! Sometimes the changes are brief. She's tired, hungry, needs to go to the bathroom! Any number of things is possible. I try to be sensitive enough to catch a pattern. Chances are they will happen again under the same set of circumstances. Just like a parent, I have come to be sensitive to the unique reactions that are hers under the circumstances.
Accepting the Change
Just accept her. It's hard to believe that our sweet mother could be irritable or fussy. Well, she can! Changes are sometimes catastrophic to us emotionally. If we are going to be prepared for anything, it is best for us to recognize this fact in ourselves, as well as in our loved one.
Excerpted from Mothering Mother by Martha Cooper Eischen Copyright © 2011 by Martha Cooper Eischen. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
1 — The Certainty of Decline....................7
2 — Engaging Her....................23
3 — Personal Care....................30
4 — A Day in the Caregiver's Life....................38
5 — Relationships....................50
6 — Resources....................56
7 — Keeping Her Well....................66
8 — In the End of Life....................72