I can tell you that there is no glory in caring for someone who can not care for themselves. There are times
when it is good to have a loved one in your home and there is a time to send them to be under professional
care. I enjoyed my grandfather Wood being at home up Mink Creek. However the joy was lost to hear mother
complain of his smoking and how he smelled like smoke such the house was starting to smell like that.
Then I heard my father cry and be concerned that mother would not make it comfortable for my grandfather
to be with us. Grandpa wanted to be anywhere else and the whole mess caused my dad to cry.
With dad Proffitt it was not our call. Mom made that decision. Having been through home care myself I do not
fault that decision.Mom and dad Proffitt were both at the age then as I am now.
If mom or Paul and Annie make the decision to pull the plug on me that's OK. I do not care that there might be some
drug or remedy that might make me whole or not. It has been a good life and I love my children and grandchildren
and great-grandchildren. I trust those responsible to make true and right decisions, and expect those not required
to make such a heart rending decision to accept and support the decisions made. Further I would expect that everyone
support and love those who had the burden of my life. I will guarantee that the rest of the family will appreciate the
support more than I will. The time I spent with my dad and dad Proffitt driving and taking them places will remain
with me more than the anguish of where they were. I will have an actual directive written that lists the type
of care and the extent of trying to keep this old body going. There was a lot of anguish with my dad about
just what he meant by no extraordinary means, and no artificial means and what ever. I blame that on
a "one size fits all" form. If I am able to visit with you and talk and hear as well as understand then
a shot or a short term feeding tube to get me past a bladder infection or the like that's OK, even if it seems like
every other week. If that is all that is affecting me then let's get it fixed so I might still be a part of yours and the
grand kids life. The flip side of that coin is what to do if I am physically well but my mind is gone. That is really
the easiest. Just put me in a home and come visit when you can, bring the grand children so they can understand
the cycle of life and have their photo taken with grandpa or great-grandpa or heaven forbid great-great-grandpa.
I have no desire for any of you children to feel that you have to care for me at home, either mine or yours.
I have been down that road and there is no glory in that. It will consume your life and affect all of your family.
I have been on both sides of that equation and do not desire for any of you to feel that you have failed if
you do not take care of me at home. Know that I love you and understand that you should not subject yourselves
to the trauma of home care. That is either your home or mine. I do not want it nor expect it. Put me with
professional caretakers. Then above all draw on support from each other. Find the strength in others who are
better able to understand and accept the issues and needs. If we must be reminded the best reminder
is the Savior's from John 13:34. Please never let hard feelings enter in from another sibling providing
care and service as they see fit. Just provide total love and support for their decisions.
I think the most important thing to remember is that I love all of you.
I have had an interesting life providing support for the ill. The happiest is when I have been able to
visit and enjoy the company of loved ones, without the burden of personally being responsible for the physical
care and well being of my loved ones. Bodily functions are best left to professionals.
Now a few things gleaned along the way. Illness alters the mind. Sometimes if is a physical change but always
there is a psychological effect. The ill question what they did to deserve it, while resenting those who are totally
whole. There is a frustration with trying to get something done and/or someone to help.
There were times with Jill that she wanted things done on her schedule and the way she wanted.
This is an indication of the need to control something when your body cannot or will not be controlled.
I do have to say I was not always kind and considerate. Little things , like close the curtains, I could not understand
why that had to be done at just that time. Now I understand that it is the little things that give the illusion of control.
Please do not find fault if another fails to hold feelings and temper in check. We all have to adjust to our own pressures in life.
We cannot know what another has been through, either that day or at an earlier time in their life. It just might all come to the surface
at an inopportune time. Most of all we,you will need to understand that we all deal with life's issues differently. We have to allow that in
others. It is not our place to say how or what is a proper reaction for another. We have not lived their life. It is not easy seeing
someone you love being in a state that causes suffering or pain for them.Well I have given you as mush advise as I am able,
now it is up to the rest of you to live up to your potential. I do feel that I have to relay one last piece of advice though.
Please do not fall into the trap of "but it is not your dad", you can't do that! I have chosen those to make decisions
about my living or dying based on their medical understanding not emotional attachment. I watched the
decision making process being done with my father, and while I supported Don in his decision, I disagreed with
it at times. Too many in the family were trying to decipher what unusual means meant. All the while dad suffered from
A urinary tract infection (UTI). In my mind that is not what it means by keeping me alive using unusual means,
or whatever. This is where a form with buzz words does not adequately describe my desires.
Now on to other information. There are mild cases or outright full blown cases of Dementia.
Don't get caught up in trying to describe if it is or isn't something.
Just do your best.
With Dementia/Alzheimer's
time and experience have given some guidelines. The first is a detailed and comprehensive list for professionals.
Ten Commandments for Communicating with an Alzheimer’s
Patient.
1. Make eye contact. Always approach them face-to-face and make eye contact.
Use their name if you need to. It is vital that they actually see you and that
their attention is focused on you. Read their eyes. Always approach from the
front as approaching and speaking from the side or from behind can startle
them.
2. Be at their level. Move your head to be at the same level as their head.
Bend your knees or sit down to reach their level. Do not stand or hover over
them – it is intimidating and scary. They can’t focus on you and what you are
saying if they are focused on their fear.
3. Tell them what you are going to do before you do it. Particularly if you are
going to touch them. They need to know what is coming first so that they don’t
think that you are grabbing them.
4. Speak calmly. Always speak in a calm manner with an upbeat tone of voice,
even if you don’t feel that way. If you sound angry or agitated, they will
often mirror that feeling back to you and then some.
5. Speak slowly. Speak at one half of your normal speed when talking to them.
Take a breath between each sentence. They can not process words as fast as
non-diseased people can. Give them a chance to catch up to your words.
6. Speak in short sentences. Speak in short direct sentences with only one idea
to a sentence. Usually they can only focus on only one idea at a time.
7. Only ask one question at a time. Let them answer it before you ask another
question. You can ask who, what, where and when, but NOT why. Why is too
complicated. They will try to answer, fail and get frustrated.
8. Don’t say “remember”. Many times they will not be able to do so, and you are
just pointing out to them their shortcomings. That is insulting, and can cause
anger and/or embarrassment.
9. Turn negatives into positives. For example say “Let’s go here” instead of
“Don’t go there”. Be inclusive and don’t talking down to them as if they were a
child. Respect the fact that they are an adult, and treat them as such.
10. Do not argue with them. It gets you nowhere. Instead, validate their
feelings, by saying” I see that you are angry (sad, upset, etc…). It lets them
know that they are not alone and then redirect them into another thought. For
example “It sounds like you miss your mother (husband, father, etc…). You love
them very much, don’t you? Tell me about the time…” Then ask for one of their
favorite stories about that person).
These carried in the Alzheimer’s Reading Room today written by Carol Larkin
This next set are more practical for the layman from a pamphlet entitled
"Welcome To Planet Alzheimer's" - by Candace
Stewart
www.planetalzheimers.com
You are now a visitor on Planet Alzheimer's. You have chosen to follow your
loved one there, as they are an unwilling inhabitant, having been taken there
by force. You
do not want them to be alone in this absurd place. But you are still used to
the influences of Planet Earth. You will find that Earth rules no longer apply
on
Planet Alzheimer's and you will have to learn to adjust to these new rules if
you want to survive this journey. They are as follows:
1) Never Argue
2) Logic and reason do not exist
3) Lying is acceptable
4) You are not who you think you are, you are who they think you are
5) Never take anything personally
6) Old memories are best
7) Learning to do something new is not important
8) Being loved and accepted at all times is important
9) Have no expectations
10) Take advantage of the shuttle back to Earth as often as possible
If you ever have questions about any of these rules ask your self this question'
"Will not following these rules cause my loved one stress, trauma, or to be upset?"
I would hope that if I am ever in this position that all of you will love me enough to help me exist
in a world that has been turned upside down and lost without adding to my anxiety. We know
that people with Alzheimer's know something is wrong with them, but have trouble understanding what.
It is OK to be blunt and tell them if you think that it will not cause them stress,trauma, or to be upset.
If on the other hand you think what I am asking may cause me stress discomfort or mental pain,
THEN LIE THROUGH YOUR TEETH,
and make me feel good, because tomorrow or when we move on to a different topic I will
not remember. In my mind that is what is important for you. Most of what I go through
in the short term will be lost and not remembered. And if I ask you the same question
time after time, try not to become exasperated, just try to remember that for me it is a
new and important thought.
