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Bridging The Two Worlds
Posted: Monday, October 5, 2015 7:15 AM
Joined: 7/24/2015
Posts: 3020

I actively participate in the Alzheimer's Association forum that is primarily populated by caregivers. I have learned a lot, I have preserved my writing skills, and I have touched some lives which lets me know that I still have some value and worth in the world. However, being populated primarily by caregivers, it can give a very slanted view of things in the world for someone like me, who happens to also have dementia.

In life, I have a foot in three of the worlds on that forum. I have been caring for my mother for the last 10 years, and continue to care for her even now; my daughter has come to care for me; and I was diagnosed with dementia. This gives me a somewhat unique perspective on the different sides of things.

What I find troubling and a bit of a challenge to grapple with, is that so much of what goes on in the world in terms of how we are treated and cared for, is created by people who don't have any idea what it is like to have the disease. They make guesses from the outside looking in, so to say.

Some general observations I have made in my time there: The spouses on the board have an easier time, overall, likely because they know their spouse as a human being, they are there all the time, and they likely adapted slowly along with the disease progression. The children caregivers of parents are the most outspoken and the most insistent in their ways, have a much harder time of it, get more behavior issues, and hesitate until drastic measures need to be taken, and don't see their parents as the people they are, but as the parent they used to be.

In the same way, the 65 and older crowd with dementia are less likely to speak up and out about things and are more likely to go with the flow. Whereas, the under 65 crowd is more outspoken. The younger one is, the more one seems to demand of the disease, to retain their function and independence, and to continue to create the kind of world around them that will allow them to do just that.

Somewhere in the middle, I find myself wondering...will we ever be able to bridge these two worlds?

Can we come together for the greater good?

Can we make caregiver's jobs easier with insight and education as to what is going on?

Can we make the later stages better for the person with the disease?

I'd like to think we can, but then again I am an incurable optimist that way.

Mimi S.
Posted: Monday, October 5, 2015 9:20 AM
Joined: 11/29/2011
Posts: 6877

Hi Sun,
I read with interest your thought. i agree and disagree with many.

First age of PWD. I agree that the Younger Onset folks tend to be more active than folks my age: mid 80s. I think that maybe because, in a sense, they were forced to confront their dementia at an earlier stage since it was affecting their work. Folks of retirement age mostly assume that their problems are simply due to old age and nothing can be done.

Behavior of spouses versus children. That is your opinion. I would prefer not to make such a statement until I had proof. I'm not sure I would be satisfied with a study of all the responses on those two boards. All we could really say is that: people writing on:

I think we have a lot to say about how we, as Early Stagers feel and wish to be treated. In general when we reach later stages, we know how we would like to be treated, but the specifics of how to do this, I feel we are no more knowledgeable , and perhaps less so, than those who are in the midst of it.

And yes, I agree that education for Caregivers is important. But I refuse to condemn those who haven't the training. Doctors who diagnose and treat are not speaking to caregivers, especially in the beginning, about their need for education. Often by the time for such training arises, the CG is 24/7 caregiving and has no time for learning a better way.

Years ago, when I was a member of the Early Stage Advisory Committee, we worked on a statement, to be distributed to health folks about how we wanted to be treated.

A similar statement needs to be written and promulgated about what caregivers need from the diagnosing and treating physician.

Posted: Monday, October 5, 2015 2:53 PM
Joined: 7/24/2015
Posts: 3020

Hi Mimi,

Thanks for your honest opinion, plenty of good insight.

For what it is worth, this post was just a reflection of some things I was observing recently, self reflection I was doing, and open questions of wondering whether we will ever be able to work together towards the greater good. It is part of my ongoing self reflections on me bridging the worlds between me as a caregiver to my mom, and me needing more care now and not really knowing how to enter that dance. So I was asking questions, reflecting, and wondering...maybe with the hope of finding some answers for myself.

Regarding the things you said about education and who: While Teepa Snow is certainly the best in the industry, there is only one of her and only limited videos on youtube - and certainly not enough to train anyone (thinking here of my daughter). But other than that, I don't think I have weighed in yet on who knows, or even, how we *should be* treated (other than human). I am not even sure I have an opinion on that yet. I am still in the ongoing process of deciding what that looks like for my own life. My daughter looks to me to tell her what I want, and I just do not know how to bridge what she can do and even picture what I might need or what might work, I honestly don't know. My workers look to me in the same fashion. They all expect me to answer, but I have no answers other than to tell them that I need them to know.

I'm glad you have some idea what you'd like, maybe you would consider sharing?

Lane Simonian
Posted: Tuesday, October 6, 2015 10:22 AM
Joined: 12/12/2011
Posts: 4421

I have some theories about this--all of which should be taken with a grain of salt. If the relationship between caregiver and parent were bad to begin with--the disease simply exacerbates it (unless I suppose the person with Alzheimer's disease becomes more docile). When the bond between caregiver and parent is very strong, the "loss" of the parent to the disease is very devastating and it is very difficult for the caregiver to adjust to the fact that their parent is now a different person.

With spouses, this may not be the first experience in caregiving and thus the adjustment may not be as great. Also the relationship between spouses while it can be just as deep as between child and parent is not usually one of teacher and protector.

When the parent is now perceived as the child, a caregiver may respond to suggestions for improved treatment of the parent, the same way as they would respond to someone who suggests (or used to suggest) to them of how to raise their own children better. They become defensive and upset that an outsider who they think does not know their situation is offering what seems to be stinging critiques. That is another reason why someone like Teepa Snow is valuable--a third party who is there to offer suggestions without seeming to be judgmental.

Posted: Tuesday, October 6, 2015 10:41 AM
Joined: 7/24/2015
Posts: 3020

Great perspectives Lane, thanks.

Yeah, I found it very hard the transition of my mom into being now like my child. There are no words for that feeling, but need to be. We are just not scripted that way.

Good point about the parenting advice, hadn't thought of that.

Lane Simonian
Posted: Tuesday, October 6, 2015 10:47 AM
Joined: 12/12/2011
Posts: 4421

Thanks, Sun. I think that your varied experiences and perspectives have become very helpful to a lot of people here.
Posted: Tuesday, October 6, 2015 5:31 PM
Joined: 12/4/2011
Posts: 16213

Teppa Snow, in conjunction with Pines Education Institute Dementia Care Academy, has serious training available.

Naomi Feil's site

Perhaps these would help your daughter

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