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)

Co-dependence and Dementia: Revisited

In reply to a post by Kate Swaffer: 
http://kateswaffer.com/2016/01/30/co-dependence-and-dementia/ (opens in a second window.)

Kate, your comment says it all: "A healthy relationship is a partnership, an alliance, not some game with winners and losers, and when the interaction in a relationship becomes a power struggle, due in part to the fact that care partners and others are given all the power over us, and people with dementia are Prescribed Disengagement®, there can be no winners."

Kate, I feel that the problem with Dementia/ Alzheimer's itself is that in the end there are no winners, only people trying to live their lives as well as possible with a disease that even kindly can only be called insidious!

There will always be 1) people trying to help and succeeding, 2) people trying to help but ending up hurting, 3) people trying to hurt and succeeding. With Alzheimer's Caregiving Partners, whether family or professional;  we see self-serving people and altruistic people, giving people and taking people, informed helpers and uninformed helpers, quality of care people and bottom line financial budget people.

Perhaps closer study and research; using comparisons of  how people diagnosed with other life threatening and life ending illnesses are treated and supported by family, friends, professionals, agencies, governments, etc; could help clarify the dementia caregiving partner model and create one which would be more equal to and more appropriate for the nature of supporting people with Dementia/ Alzheimer's!

I believe that contributing factors to this care giving partnership thinking are more complex than the Dementia itself. In healthy, functional relationships, living life can be easier. In unhealthy, dysfunctional relationships, living life can be harder. Either way life itself can be at the same time a "fight" right beside a "dance" and the Dementia complicates it. This is true not only for love relationships but also family and health care organizations and governmental agencies. Functional vs non-functional!

Finally, with Dementia/ Alzheimer's, eventually the person diagnosed will need to have someone make all of the decisions about meeting their wishes, care, treatment. Eventually the person with Dementia/ Alzheimer's will not be able to make known their needs, wishes, discomforts, pains, desires, etc.

Perhaps the best way to deal with this is for the Caregiving team to try to talk about or put into writing, the details of how the Caregiving Partnership Model might look for the person needing such. Attempting to clarify how they want to be dealt with when the time comes that they are no longer able to coherently deal with life's major as well as day to day decisions can solve a lot of decision problems for all members of the Caregiving Team. Often families and/or the people with Dementia are not emotionally able or willing to be open and honest about the disease and their wishes for the future.

Hopefully in time, with more awareness, the "RIGHT" people and ideas and approaches will win out. I think the best way to continue aiming in the right direction is: "NOTHING ABOUT US, WITHOUT US!"