Monday, February 22, 2016

Dealing With Differences and Decisions

I woke up this morning dreaming and thinking about Alzheimer's. To be honest while Dementia/ Alzheimer's is still strong in my thoughts, my life after Gregory's death has changed directions and I seem to be on to different things: like grieving his death, working on the More Than Ever Education Fund, continuing to fine tune my home in the condo, entertaining friends and family, planning travel, writing, and getting ready to do 2015 income taxes. So I was kind of surprised about the ideas I came up with based on my dream and thoughts which shows that one can never leave Dementia/ Alzheimer's behind when once experienced!

Each of us is so different from the next in so many ways and we are constantly, even if in small ways, growing and changing! Each of us is the sum total of all of our experiences, education, upbringing. Each of us has our own attitudes, opinions, beliefs, bias, prejudices. Each of us has our learned likes and dislikes, our own preferences. Each of us has different levels of training, education, ability, skills, talent, creativity and more. The mind and brain certainly is a very complex organ.

So when one is dealing with Dementia/ Alzheimer's, and all of these things begin to change, to disappear, and at times to rearrange and bastardize themselves ... what an amazing array of differences are affected. And when one is part of the caregiver partnership for the person with Dementia/ Alzheimer's, what an amazing array of issues we have to deal with and what an amazing array of decisions we have to make. What an amazing array of our own behaviors we have to change and to monitor!

Sometimes we get to deal and decide with the person, sometimes we have to deal and decide by ourselves on behalf of the person based on previous conversations and perhaps on previous dealings and decisions. Sometimes we have to do things for, or to the person that we can only base on our own understanding of that person and based on our love for that person.

As the person's abilities to decide for themselves changes, whether because of lack of language or because of the inability to make good decisions, we must take a more active role and that is at least as complex; as we try to hold our love and respect for the person, trying not to preclude the person's abilities too soon, while at times having to make decisions or take actions that the person on behalf of whom we are caring does not agree or want to accept.

From many of my new friends who are in the midst of living as well as they can with Dementia/ Alzheimer's, I hear concerns and complaints of this "Caregiving Partner Relationship." I hear anger and resentment at "others" deciding for them. I hear about organizations (perhaps a story for a future post) who are mainly interested in maintaining their own position, their own power, their own ideas without enlisting the advice of those for whom they are advocating, people with Dementia/ Alzheimer's!

I know that there are many people in the role of caregiver partner who act on their own behalf, do not have the intelligence to be making these decisions, or do not have enough experience to make good decisions. Possibly some of these people are just plain "bad" uncaring people. Financial situations, family needs, and health issues of the caregivers themselves complicate the relationships and what they are able to do for the people in their care.

I empathize and can commiserate with my friends who have diagnoses of Dementia/ Alzheimer's, but I find myself holding back from arguing with them because I am not the one with Dementia/ Alzheimer's, so what gives me the right or the expertise to argue the case from my side of the caregiving partnership!

I am told that there are many people out there in the role of caregiving partner who are not as thoughtful and loving as I am (if I may pat myself on the back,) and how fortunate Gregory and I have been in our love relationship. But that is not an excuse and does not solve the complex issues involved in what makes a successful caregiving partnership!

What I want to say to my new friends, and am taking the risk of saying so here finally, is that one day, dear friends, you will not be able to make decisions for yourself. You will be at the mercy of others. And hopefully these others will know what you want because they are good people, because they are compassionate, because you have discussed your desires with them, because they know you and love you well enough that they will be able to put themselves in your place when you are of a diminished mindset.

Hopefully they will be able to make good decisions on your behalf, while continuing to treat you with the love and respect you deserve; whether you gently, defer to them or whether you fight them. The decisions will have to be made. That is the truth of the situation. Someday you will not be able to act on your own behalf and you will have to depend on others. The best thing, I believe, you can do is try your best to prepare for, and discuss your needs while you can.

I have found several quotes which may or may not be a good way to end this post. You decide:

... except LOVE! (My quote 2007)
... we all die and our problems disappear! (My quote 2004)


  1. Are you aware of the phenomena of Diabetes Type 3 and its possible role in AD? I'd never heard of it until yesterday and was about to dismiss it as yet another fund-raiser until I noticed that NIH had addressed it.

    1. Yes Jean, I am aware of the possible connection of Diabetes and AD. I guess there are at least a dozen types of dementia out there, only one of which is Alzheimer's although it seems to be the most prevalent.

  2. Hi Michael,

    I love this it prett much sums it all up well, I think. I hope you will talk an argue me, as I try find my own way through this complex you have a wonderful magical way of altering my thoughts views for bett. <3

    1. Thanks Faith. I find that I need less to argue with others but rather process for myself. If I can come to understand something, I share my understanding and that is enough for me. I do not need to convince others:-) Glad you are "letting me into your thoughts." That in itself is magical for me to think that I matter to you. Fondly, Michael

  3. Yes, there is good and bad out there. People should try to plan ahead and choose wisely with respect to whom they give control of their lives…

  4. Looking back at the other blog, (Alzheimer's) I noticed that you never mentioned delusions. One of my siblings could get quite delusional and sound rational at the same time. The most horrid example was when she went to the ER with chest pains. They sent her son out while she was examined. She gave a fabrication with no basis at all, totally forgetting her original complaint. They called him in and said, "Mrs. Neal tells us that she was raped by her stepson. Is that true?" He replied, "Did you happen to notice WHERE Mrs. Neal came here from?" (Alz. unit of a very prestigious facility). "Her stepson is a Baptist Minister in another town and has not seen her in months." By the time the ER visit was over, she'd told various staff that she was 1) having a baby, 2)was advised by the doctor not to move lest she hemorrhage again, and 3)that she was just there because she couldn't hold her water. We were never sure the extent of the delusions or whether she was just having a good time making jokes.

    1. Not to dilute the difficulties with delusions (how is that for alliteration?) but Mrs. Neal's stories sound quite creative. Luckily Gregory never had any major delusions. Once or twice, in the middle of the night he knocked an animal of some sort off my sleeping shoulder scaring the shit out of me. Once he heard someone at the door and went to answer it in his pajamas (birthday suit.) Once he saw his shoes against under the bench across from the bed and wondered, "How did they get in here by themselves." Most of those events I attributed to his not being able to tell his dream state from reality. Otherwise no delusions which I can imagine can be quite disturbing to those around you.


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