[Magdalen] More with Marcy

Sally Davies sally.davies at gmail.com
Sun Sep 6 06:27:26 UTC 2015


Prayers as always, Jim. You and Marcy are often in my thoughts.

As to not being able to do anything about the dementia, it might still be
worth contacting the ALS multidisciplinary clinic if you are associated
with one. There is new knowledge and research on the overlap between ALS
and Fronto-Temporal dementia (differrent to Alzheimer's in several
important ways), and expert advice is always of value even if only to give
you some ideas for new ways to think about/cope with what's going on with
Marcy and what she might be experiencing.

Unless she's had a stroke along the way (which might not be impossible?)I
would guess that this latest 'reality interface malfunction' is part of a
more general loss of insight as neural circuits break down, sometimes
reconnecting weirdly and other times going silent.

And maybe loss of insight, for the person concerned, is not such a terrible
thing. If it were me, I would rather be thinking "I can help Jim with the
cooking" than "I will never cook again".

Jo, thanks for sharing that snippet of memory from the weary days of
caregiving with your Mom. I hadn't thought about the "bittersweet" moments,
but will file that away, if I may, as something to enquire about when
people are strugging with caegiving or are going through bereavement.

I've seen many reactions to the dementia of a loved one, from total
distancing to 100% involvement. The latter takes immense strength and
determination but I cannot believe that the people who take that "road less
travelled" are ever likely to regret it. My beloved friend Jenny in the UK
was nearly wiped out by her commitment to herr Mom (blind and suffering
dementia) but she saw it through and the "peace dividend" in her life now
is a joy to behold. Like you, Jenny tried to take breaks when she could and
it made a big difference, keeping exhaustion from running all of her plans
and strategies and emotions.

Sally

On Sunday, September 6, 2015, Jo Craddock <jocraddock at gmail.com
<javascript:_e(%7B%7D,'cvml','jocraddock at gmail.com');>> wrote:

> This behavior so reminds me of some exhibited by my mother as her cancer
> metastasized. I found if I could be kindly honest, rather than brutally
> honest, it often helped both of us deal with each particular situation.
> "Wouldn't that be nice? I wish you could do that, too." Of course, I was
> not always up to that, nor was she always open to it. Take a nap, yourself,
> while she naps, if at all possible.
>
> Some of those times are now etched in our household collective memory as
> sweet incidents of the spirit being willing, but the flesh weak. "Yes,
> mother; why don't you cook tonight?" and talking through it with her as I
> prepared dinner, has become a euphemism for someone suggesting a project
> that another has to complete. And, we can smile with the remembrance.
>
> With prayer for
>
> Peace,
> Jo
>
>
>
>
> On 09/05/2015 8:28 PM, James Handsfield wrote:
>
>> Yes, I have.  The problem is that there really is nothing to gain by a
>> specific diagnosis of dementia as it won’t change the course of Marcy’s
>> disease or the way we deal with it.
>>
>> This is known as Frustration.
>>
>>
>


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