Ina and Arnie, January 2000Ina and Arnie Feidelman, January 2000. Arnie was diagnosed with Alzheimer’s the following month.

The perspectives of people caring for loved ones with Alzheimer’s is “worthy of a show unto itself,” as Krista put it. Indeed, many of the people who wrote to us when we first released “Alzheimer’s, Memory, and Being” articulated the full range of emotions — pain, love, anger, bewilderment — that caregivers can feel. And while this week’s show references the caregiver experience, it’s not at the center of Krista’s conversation with Alan Dienstag.

He’s now in the process of developing a new therapeutic initiative for caregivers called “Ina’s Story,” which is based on the first person account of a former patient, Ina Feidelman. She spent 10 years caring for her late husband Arnie, who suffered from both Alzheimer’s and Parkinson’s.

Here’s an excerpt from that account, titled “Needing Help”:

“People began to tell me that I should get help in the house. My children my brothers and friends were all concerned about me. They were worried that I was ‘killing myself.’

I put Arnie in a day program 2x a week from 1-4 PM. He hated it. He only wanted to be with me. I hired an aide to do some food preparation, to shower him and so on and it was pointless. He would not accept her, and he was angry. He only wanted me. She lasted three weeks. He told me, ‘I know it’s hard honey but I don’t want anyone to take care of me but you…I need you here with me.’

I said, ‘But Arnie, I am being worn down. I can’t do it anymore.’

I was it…

I cried a lot during this time. I used to cry in the shower, it was private time. That was when I let it hit me…

And I was very angry. Why had this happened to us? I actually had the thought that maybe we were too happy, that somehow things were too good and it had to be taken away from us. It sounds crazy now, but that is what I was thinking. I remember discussing it with my brother, he said “Ina, you were dealt a bad hand, that is it, there is no reason.” I believe that is true, but that is not how I felt then.”

Ina’s story is powerful, Dienstag says, because the trajectory she experienced, both practically and emotionally, is so typical of caregivers: “Our hope is that we can use it to help caregivers who are at the beginning of the process that she has already completed.”

Arnie at the Sarah Neuman Nursing Home August 2006
Arnie and Ina Feidelman, August 2006.

He also hopes this new project will motivate caregivers to seek psychological support in greater numbers: “The truth is that many caregivers fear (and sometimes hope) that they will not survive the experience of caring for someone with dementia and, remarkably, many go through this without any help.”

Dienstag and Feidelman are seeking funding for the project while they develop more written materials.

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9Reflections

Reflections

It would be helpful to do a show focused on the caregiver's experience and perspective. When a person who is a part of a couple gets this diagnosis, both people get the diagnosis. And the disease is not just pathological but it's also social, as we've found out very quickly. My wife was diagnosed a bit less than a year ago, is still functioning at a relatively high level though she can no longer work and is now on disability, but our healthy circle of friends has already begun to tighten and get smaller, not because we've pulled back, but because some of them have. That's probably been one of the hardest things to accept: that when you're still relatively young, and we're in our early 60s, folks our own age or younger don't want to go anywhere near this. Well, neither did we, but now it's our reality. The hardest thing probably is that we have no family here at all; it's just the two of us. So that's mainly what I think about when I wake in the middle of the night wondering how we'll manage as things progress. For the time being we're lucky - she seems stable and we're still having fun and enjoying one another.

I am a hospice caregiver and have been working with patients with dementia and AIDS for 15 years. In all my experience suppoting families I work with I have found a positive space to go one. But, to date, my most devastating experience is the loss of my grandmother to alzheimers. I spent time doing respite for my aunt and uncle living with her and felt fortunate to have the skills to deal with her dementia and her eventual nursing home placement. Many family members choose not to face their own pain and continue to spend time with her. This frustrated me. At her funeral I was angry at them...irrational as this seems. I struggle why my grandmother "deserved" this fate. I lose it when I hear the word alzhemeirs...I can't even watch those commercials for new medications. I turned on the radio this morning and almost turned it off but decided to engulf myself in the kind words spoken...it helped. The comment that love endures thru it all that even when a person doesn't know who the family member is they know they sill love that person. I hold that thought close to my heart. I so appreciate this opportunity to blog and continue my journey as a caregive to process this grief. I hold my memories of the "unraveling" process of my grandmother's illness as a gift in a way...thank you so very much!

I liked the comment about love enduring even when memory doesn't. That is why we caregivers do what we do because we still love the pwerson with the disease. I am reminded that love is an active verb not passive.

Memory Care
- for Anita

I heard some of you got your families living in cages tall and cold and some just stay there and dust away past the age of old. - Jimi Hendrix "Up From the Skies" (1968)

age breaks the cage
the canary
lingers

the boiled egg
of her mind cracks
open

day after
yellowed day
nothing stays

each morning she
rises to a
fresh world

smiles as she waits
for the shutter
to snap

plays out childhood
from vague finish
to start

she rides the glass slide
through the fogged
mirror

by M. D. Friedman
www.mdfriedman.com

My wife's family is beginning the process of caring for her parents. Her father, nicknamed "Big Red", because of his heart, not his size, has Senile Dementia and her mother, Martha, has advanced Lyme disease and crippling arthritis. These two were known and loved for many things around their small town. Leadership, coaching football, swimming, mentoring, motherhood and fatherhood role models for their 6 children and most of the towns kids, too. Red could tap dance until he was 75. Martha was a great dancer with great legs until she was 80. Now, Big Red shuffles aimlessly and Martha can barely walk at all.
This summer, they will return from New Orleans, where they live with their youngest son, and move back into their summer house, next to ours. We will eat all meals with them, give them their medicine, and lock them in at night. Then, we will watch out our window until the last light is out before we can go to bed. They think they are "living independently". They are failing weekly. Big Red, my father in law and my hero, is already gone mentally. We will have to make hard decisions reluctantly and soon. This is what I wrote about him today:

Where is My Father?

Where is my father?
He is not here.
He has left this world
and us, we fear.

He walks and talks
and asks us where
he lives and why
he is not there.

He tries to leave
his own house and wife
To find his mother
who left this life.

He says we are not his
we beg him stay
he hides his meds
and sneaks away.

We follow him
as he wanders
down the road
to places yonder

He stops and stares
as through town he roams
But this is not his town
so we bring him home.

"Who is that woman?"
He asks in tears.
"It is your wife
of 50 years"

That is not her
mine was younger
I must go find her
not stay here longer.

We calm him down
and take him to his bed
and watch in the darkness
until he rests his head.

His wife crawls in
and holds him fast
He weeps and hugs her
and sleeps at last.

Tomorrow is
another day
like the last one
We fear and pray.

We ask God's help
but know not what to ask
to make him better
or make this his last...

Day on earth
So he can rest
and meet his maker
and feel his best

Where are my fathers?
Both in heaven above.
Some day I'll join them
Reunited in love.

-- written by the son-in-law of a man with Senile Dementia
whom he calls father.
April 27, 2010

Dear Ina - Our deepest thoughts and prayers go out to you for the courage you have shown all these years. As we begin our terrible journey, we will think of you as inspiration for the strength we need to cope. We can not even discuss putting our father away yet. We know that time will come.

I am mcuh happy i visited your blog.

I had no idea that memory iseuss are not necessarily a normal part of aging whoa!My parents and my in-laws are, shall we say, pre-elderly (I'm sure they would just love hearing this!) and are capable, independent people. However, because of my work and because I know plenty of people in my age group (old Gen X) who have dealt with a whole range of iseuss with elderly parents, I tend to do a lot of reading on this topic.I've just found your blog and see that it is chock-full of incredibly useful advice. Thanks for this post and for pointing out the resource on Caring.com!

I to was the soul care giver to my father. He was diagnosed in Aug. 2011 only after I had to continue to push and repeatedly call his physician...then finally I had to put my foot down and insisted he be sent to a specialist and scans be done or I would be encourageing him to change his physician. At this point, I was simply a daughter of a wonderful loving father...who was going through a nasty divorce, from a evil woman who clearly seen these signs and left before it became clear to anyone else.