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Why do caregivers say this?
Iris L.
Posted: Monday, May 21, 2018 5:17 PM
Joined: 12/15/2011
Posts: 16934


I often read something that is very disheartening and disturbing to me.  Caregivers often refer to a PWD as being a shell of a person because they have no memory and can't recognize their spouse or children.  A person with no memory and no recognition is still a person.  A person deserves to be treated with dignity and to be referred to as a person, still a human being.  I see this all the time on the boards.  To call a person a shell is to deny humanity, IMO.  I don't like this.  Why do they say this?  


Iris L.


jfkoc
Posted: Monday, May 21, 2018 6:26 PM
Joined: 12/4/2011
Posts: 19622


My husband was never a shell of a person. I understand why it is said but agree that it is sad to view someone that way...it short changes both the caregiver and their loved one.

I will be more attentive to this view. Thanks for pointing it out.


Bob Sacamano
Posted: Monday, May 21, 2018 6:34 PM
Joined: 1/31/2012
Posts: 499


I agree. I don't like the term and would never use it to describe my LO. It is disrespectful. However, when a PWD is referred to, as such, in the caregiver and spouse boards, it's always with empathy, never malice.
ruthmendez
Posted: Monday, May 21, 2018 7:26 PM
Joined: 9/8/2017
Posts: 2329


this reminds me of that 'broken reasoner' post. Where someone said we shouldn't use it to describe a PWD. I think if it offends anyone, stop using it. I guess some people feel a certain disconnect with the PWD, and these terms are used to someway describe how they feel or understand the person who is suffering from dementia.
Iris L.
Posted: Monday, May 21, 2018 8:14 PM
Joined: 12/15/2011
Posts: 16934


I agree that the word shell is not used with malice, but I believe with hopelessness.   We always read that Alzheimer's Disease doesn't get the financial or other attention that other diseases, such as cancer and HIV/AIDS, get.  I wonder if this is because in the public mind, PWDs become shells, and why spend too much money on shells?  When I read that word, I begin to feel hopeless myself, and I don't want to feel like that.  I am trying to stay encouraged.


Iris L.











Bob Sacamano
Posted: Monday, May 21, 2018 8:44 PM
Joined: 1/31/2012
Posts: 499


Yes, it is a hopelessness, isn't it. In that same vein, isn't there also a dismissal of humanhood, when people say that they are in mourning, while the PWD is still living. Also, Iris, very interesting point about this particular mindset being tied to the paucity of funding for Alzheimer's research versus other diseases.
Jo C.
Posted: Tuesday, May 22, 2018 9:52 AM
Joined: 12/9/2011
Posts: 11591


Hello dear Iris, a Member on another Forum was asking for something from a Catholic perspective and so I decided to do a Search for her as I had no idea as to where to find what she was asking.  I did not find what she was looking for, but while doing this, I came upon some interesting writings.  The link that follows is a well-written piece and the bit about parents of special needs children in comparison to those strongly compromised in their dementia, was in my point of view really excellent; it is not a specific religious writing:

 https://www.catholiceducation.org/en/science/ethical-issues/defending-the-dignity-of-those-with-dementia.html

There was also a really excellent story in the New Yorker about a very, very special multiple care level facility in Arizona called the, "Beatitudes Campus," which sounds beyond awesome in which individual personhood is what it is all about.  Amazing open-ended person specific care and amazing philosophy and picked by the Alz. Assn. for special recognition.   This is what I would want for myself.  Here is the link for that:

www.newyorker.com/magazine/2013/05/20/the-sense-of-an-ending-2

From my reading on the Forums, it does not appear that the majority or even most of the Caregivers consider their LOs an "empty shell."  There are some folks who do use unfortunate terminology not intended in the full meaning of the word and a few do, and sometimes a few may even parrot what they hear someone else has said, but not all, or even the majority appear to feel or express themselves that way.   The idea that a spouse is no longer their spouse and other such unfortunate communications is far, far in the minority thank goodness.

Yet; there is a lot of grief, fear and other emotions with all their attendant stages for the Caregivers too, so just as we try to make accommodations for those with dementia, I also think we need to try to make some accommodation for those Caregivers who are stuck in the midst of overwhelming grief, fear and even overwhelming exhaustion and who may not be communicating with full intent in their choice of words.

Words can hurt, and for that Iris, I am truly sorry.  I can well understand such words can hit the person with dementia as though it is a solid brick.  Just like anything else, it is person specific and even if hurtful we can try to ignore such written utterings because we know that is far from truth.

Once again,  I really liked the article in the first link; it shows how far out of reality such thinking really is and it also hits medical providers.

Hugs to you Iris, you are doing all you can, you are maintaining well even though you cannot get a clearcut diagnosis and you are doing it all alone, what an amazing person you are!

As always, this comes with a big soft hug for a very special person

J.


Jim Broede
Posted: Tuesday, May 22, 2018 10:12 AM
Joined: 12/22/2011
Posts: 5462


Why do we have societies peppered by racists?  We discriminate. Sometimes just for the hell of it. Because of skin color. Or ethnicity. We send millions to the gas chambers. Just because they’re Jews. It’s unfair. The way societies treat people. With low IQs, too. With dementia.  Makes me wonder. If we qualify as civilized. I have serious doubts. --Jim


Iris L.
Posted: Tuesday, May 22, 2018 4:26 PM
Joined: 12/15/2011
Posts: 16934


Thank you for the links, Johanna.  I have never agreed with why we don't have the Beatitudes in most facilities.  Let the PWDs do what they want.  Let them stroll around.  Turn off the televisions and the background noise.  


I purposely posted in Musings instead of on the caregiver boards.  I am sensitive to the hopelessness, and I could feel my mood deteriorating.  That's what prompted me to post.  As I mentioned, I try to remain in positive spirits, and it seems to be getting harder lately.  I also posted on the Catholic thread, about Paul Horback's blog, www.faithfulfoggyliving.com.


Johanna, can you tell me what search words you used? I would like to find some more encouraging sites.


Iris L


chrisp1653
Posted: Tuesday, May 22, 2018 11:52 PM
Joined: 1/23/2017
Posts: 1281


Jim, where did that one come from ?
Jo C.
Posted: Wednesday, May 23, 2018 6:08 AM
Joined: 12/9/2011
Posts: 11591


Hello again Ms. Iris; of course you needed a fresh place to come and talk about something bothersome to you.  I get it.

Actually, I stumbled across those links without intention.  There was a Member on one of the Forums who was looking for Catholic writings and since she had no response, I tried to do a short Search for what she was looking for, but did not find anything.

However, when I Googled the Search words, "Catholic Perspective On Dementia," that is where I found those two links.   I really liked the one from Father Thad; he is quite a writer and the religious was not part of it.  The New Yorker article had no religious connection whatsoever.

Frankly, I think I would like to read more of F, Thad's writings; he has a PhD from Yale and seems a highly compassionate and intelligent person.   His field is in ethics and he has quite an interest in persons with dementia.

We need so much more of what was in those two articles.   I did Google the Beatitudes Campus in Arizona and one has to really dig into their website.  They mostly advertise their Independent Living Houses and Apartments; they are a none-profit entity.   One has to keep looking for their Assisted Living, NH and Memory Care information which is listed a bit separately.   Sure did need more easily posted information.

Anyway, if I see anything else, or if you do, let's share it.   I am always reading as much as I can and always look for excellence in independent care approaches.  Not much to be found no matter how much one pays for the fees.  The people at the Beatitudes Campus seemed to have a wonderful time.  They even have separate houses from one to three bedrooms and well equipped.   I enjoyed looking, but did not price anything out.

J.


Jim Broede
Posted: Wednesday, May 23, 2018 10:25 AM
Joined: 12/22/2011
Posts: 5462


Iris L. wrote:

I often read something that is very disheartening and disturbing to me.  Caregivers often refer to a PWD as being a shell of a person because they have no memory and can't recognize their spouse or children.  A person with no memory and no recognition is still a person.  A person deserves to be treated with dignity and to be referred to as a person, still a human being.  I see this all the time on the boards.  To call a person a shell is to deny humanity, IMO.  I don't like this.  Why do they say this?  

Iris L.


 

I try to get through life, Iris. Without being disheartened or disturbed. By life’s flaws. There are plenty. But every day. I search for something to savor. And find it. I sense that you do the same. That’s your salvation. Your source of daily sustenance. The stuff that makes you a survivor. Despite the flaws. You find ways. Deep down.  To stay in love. With life. Don’t you? --Jim


Iris L.
Posted: Thursday, May 24, 2018 1:06 PM
Joined: 12/15/2011
Posts: 16934


Thanks, Jo C and Jim.  It's hard to counteract the attitude of pervasive hopelessness.

 

Iris L.