Turning Points in Dementia / Alzheimer's Care

The issue of understanding, dealing with, and providing care for people diagnosed with Dementia/ Alzheimer's, as well as all those included in the Caregiving Partnership/ Team, is a very complex one. 

I have tried to brainstorm some of the issues with which we must grapple. 

1. Understanding the cause of the Dementia
2. Understanding the nature of the Dementia
3. Understanding the expressions of the Dementia
4. Understanding the trajectory and progress of Dementia
5. Understanding the difference between old age changes and Dementia
6. Understanding how to support of the person with the Dementia
7. Understanding how to support the person with the Dementia at the various stages of the disease
8. Understanding how to support the person with Dementia while understanding that slowly they are not able to care for themselves
9. Understanding how to support the person with Dementia while understanding that their skills may come and go, return at the same or lesser ability level, and eventually disappear totally
10. Understanding how to support the person with Dementia while continuing to acknowledge and respect them as a person
11. Understanding how to support the person with Dementia while continuing to respect their rights as a human being
12. Understanding how to support the caregiver in the Dementia team/ partnership as well as the person diagnosed.
13. Understanding how to support the family of the person with Dementia.

1. Realizing the importance of relationships in general 
2. Realizing the importance of respect in relationships
3. Realizing the importance of communication in relationships
4. Realizing that in many ways living a good life with Dementia is the same as LIVING A GOOD LIFE
5. Realizing the importance of partnerships in caring relationships
6. Realizing relationships depend on the nature of the person, their experiences, their personalities
7. Realizing that changes over time will require changes in relationships in general.
8. Realizing that changes over time will require changes in approach to supporting the person with dementia
9. Realizing that the person is still the person and not the disease
10. Realizing there is no easy, one good way, "silver bullet" way to deal with Dementia
11. Realizing that the very nature of having to make decisios for the person with Dementia is in essescence a violation of their human rights and must be done very carefully with love and respect
12. Realizing what the person with the diagnosis of Dementia is experiencing
13. Realizing what the person supporting the person with the diagnosis is experiencing
14. Realizing what the family supporting the person with the diagnosis is experiencing

1. Focusing on how to help medical professionals be better able to support people diagnosed with Dementia as well as their caregivers and families.
2. Focusing less on the medicalization of Dementia
3. Focusing on transition in home, family, relationships
4. Focusing on redefining of home, family, relationships
5. Focusing on supporting Dementia cognitive and physical losses as a physical/ mental disability
6. Focusing on the person, not the disease as much as possible
7. Focusing on human rights and respect for the person who slowly is no longer able to make decisons for themselves
8. Focusing on living a full, meaningful life that will change as the Dementia changes
9. Focusing on alternative skills, activities, experiences that will change as the Dementia changes
10. Focusing on mobilizing community support for caregiver teams
11. Focusing on keeping a balance between meeting the needs of the person diagnosed with Dementia and not assuming the person cannot meet their own needs
12. Focusing on keeping a balance between meeting the needs of the person diagnosed with Dementia, not assuming that they cannot meet their own needs, but stepping in before the person becomes too frustrated.
13. Focuing on keeping a balance between meeting the needs of the person diagnosed with  Dementia, not assuming that they cannot meet their own needs, but stepping in before the person becomes too frustrated, and realizing that this may change often if not day to day or hour to hour. 

1. Research on finding a cure for Dementia
2. Research on best practices for supporting those diagnosed with Dementia
3. Research on best practices for supporting all those involved in caring partnerships
4. Research on living well with Dementia
5. Research on best practices for facilities working with those diagnosed with Dementia
6. Research on design of facilities for those needing protected care

1. Sound Bite: "How to keep life relevant? Useful? Meaningful? Personal?"
2. Sound Bite: "Individualize not institutionalize"
3. Sound Bite: "Individualize not medicalize"
4. Sound Bite: "Live until you die"
5. Sound Bite: "The diagnosis does not have to be a death sentence."
6. Sound Bite: "There is quailty life after diagnosis"
7. Sound Bite: "As in life, so with Dementia, just a little more complicated."
8. Sound Bite: "Not segregated into caring communities but rather communities that know how to care"
9. Sound Bite: "Living a good live with Dementia is living a good life period"
10. Sound Bite: "We are all born with a death sentence!"

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)