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Author Topic: Managing Senile Dementia  (Read 5899 times) Average Rating: 0
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ozgeorge
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« on: March 23, 2007, 09:05:20 PM »

Two months ago, I took on the full time care of the 86 year old mother (Gwen) of a long time family friend who is no longer able to care for her due to her own illness requiring chemotherapy. Gwen has vascular dementia which is progressively getting worse, causing her to be confused most of the time. So I thought it may be a good idea to start a thread on the topic in case there may be others who also care for someone with Senile Dementia.
For Gwen, afternoons seem to be worst, when she asks where her mother is and becomes agitated and wanders unless someone she knows is sitting with her. Here are a few tricks I've learned so far.

1) Provide meaningful tasks to do.
As Gwen tends to become increasingly confused in the afternoon around 5pm, I've started to save some simple household chores for her that she can do sitting in her chair at that time, such as folding laundry, shelling peas, knitting, sealing envelopes. If she has something meaningful to do, she gets through this agitation and doesn't have time to think about how confused she is.

2) Creative signs.
To prevent Gwen from wandering out the front door, I originally had a sign on the back of the door saying "STOP! DON'T LEAVE WITHOUT TELLING GEORGE!", but she would ignore it, and I realised that it had too much information for her to process when she was in a confused state. So I went to a hardware store and bought one of those signs that go on men's toilets- with a simple male figure and the word "MEN" and put it on the back of the door, and she has never wandered out since!

3) Using cats as restraints.

If Gwen is particularly agitated, I'll sit one of the cats on her lap to sleep. She loves to stroke them, and she won't get up so as not to disturb the cat- so everybody wins (including the cat!)
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« Reply #1 on: March 24, 2007, 12:32:12 AM »

Although I have no advice to offer about how to care for elderly dementia, I wanted to thank you George for the care you are giving Gwen.  It is very admirable of you to take care of this elderly person (and a non-relative to boot) and reminds me that we are all called to serve others.

bless you,    Juliana Smiley
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« Reply #2 on: March 24, 2007, 01:22:40 AM »

Juliana,
There is no way I could do it without an extended network of family, friends and community volunteers (and the world's greatest cleaning lady!)......It takes a village...
That's been another amazing experience about looking after Gwen. Caring for vulnerable people brings out the best in the Community. And Gwen brings people in the Community together whose paths would probably never have crossed otherwise. For example, a young lady who comes and looks after Gwen for three hours on Wednesdays met my cousin Peter last month, and they've been dating for several weeks now. They both separately talk to me about the other, and although it's early days, I think wedding bells are in the air! They would never have met if it wasn't for Gwen.
« Last Edit: March 24, 2007, 05:28:37 AM by ozgeorge » Logged

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« Reply #3 on: March 24, 2007, 11:14:51 AM »

This task can be loving and fulfilling, and at times heart breaking, I cared for my mother for the last 3 years of her life.

One needs to have a plan to rest and relax from the task or it will cause depression and have a ripple affect through the family.

james
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« Reply #4 on: March 24, 2007, 11:39:07 AM »


1) Provide meaningful tasks to do.
As Gwen tends to become increasingly confused in the afternoon around 5pm, I've started to save some simple household chores for her that she can do sitting in her chair at that time, such as folding laundry, shelling peas, knitting, sealing envelopes. If she has something meaningful to do, she gets through this agitation and doesn't have time to think about how confused she is.

2) Creative signs.
To prevent Gwen from wandering out the front door, I originally had a sign on the back of the door saying "STOP! DON'T LEAVE WITHOUT TELLING GEORGE!", but she would ignore it, and I realised that it had too much information for her to process when she was in a confused state. So I went to a hardware store and bought one of those signs that go on men's toilets- with a simple male figure and the word "MEN" and put it on the back of the door, and she has never wandered out since!

3) Using cats as restraints.

If Gwen is particularly agitated, I'll sit one of the cats on her lap to sleep. She loves to stroke them, and she won't get up so as not to disturb the cat- so everybody wins (including the cat!)

Those are pretty simple yet ingenious solutions.  God bless you as you care for Gwen.
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« Reply #5 on: March 24, 2007, 12:36:44 PM »

Dear OzGeorge and Jakub,
Let me express the highest admiration of your actions of care for others. That really illustrates how extraordinary you are.
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« Reply #6 on: March 24, 2007, 03:37:37 PM »

We kept my mother for 10 years as she deteriorated with Alzhiemers and we recieved blessings that my brother sister who both refused to help with Mom did not recieve.  My wife Patricia is a nurse's aide who taught all of us, myself and our 5 children, how to care for my mother with love and dignity and it was to my wife that Mom's last words "Thank you" were said before she peaceably reposed.

One of the blessings we had was that several months before she reposed we discussed with a priest about bringing her into the Church, he said yes because she was now as a child. The miracle occurred when she was Chrismated, suddenly she was crisp and aware as she had been  in her past. She answered all the questions, said the creed and the Lord's Paryer, crossed herself in an Orthodox manner and discussed her life for three hours with our family , the priest and his wife.  Stating that she was tired she went to bed and awoke as she had been prior to her entry into the Chuch.  She looked forward to communing to the end of her days, she crossed herself as an Orthodox Christian, kissed her facorite icons, and was a joy to us all. Her Orthodox funeral was a witness of the resurrection as the  special hymns testified to her non-Orthodox family about her  beliefs she had embraced. Several of the Old Aunts came by and hugged us to thank us for the care of Mom and to say that "THAT was how a funeral should be".

A suggestion to help you out with a wandering dementia patient is to place a black rug in front of the door either inside or outside.  The demented loved one will see the black carpet and interprete it as a deep hole and not go out the door.  When you are ready to leave the house with mom, just pull up the rug and she will go out the door. This was told to me by the Alzhiemer's support group in my home town and it worked well.  With night wandering, turn out all lights in the house except for some in the room of the family member, many demented people will not go out a door into the dark and the soft light in their room is inviting and comforting.

My love and prayers are with you.
Thomas
« Last Edit: March 26, 2007, 09:26:14 AM by Thomas » Logged

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« Reply #7 on: March 25, 2007, 01:36:17 AM »

Thank you George for that.

One other thing that I would advise is to be patient and loving.  I had a grandmother, who I can say was a second mother, the woman who truly raised me, who later on in life had dementia.  During her dementia, I gave her a hard time as a teen.  But one has to understand their situation, and I was a stupid stubborn selfish teen at the time.  As I grew I realized the love she had for me, a love rooted in Orthodox Christian faith and sacrifice, and regardless of how I treated her, she never stopped loving me.  I began to express my love back to her, although I felt it wasn't enough, since she was gone so quick.

And mind exercises are also important.  Show them pictures reminiscing the times, ask them what they did during the day, get them to name all her children and grandchildren in the process, listen to their endless, and actually quite enjoyable stories, if you just listen.  Things like that.

Love and appreciation again should be stressed.  Laugh together and live together.  If the mind is in a healthy, positive, happy state, the memory will be better, not to mention it's the loving and enjoyable thing to do.

God bless.
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« Reply #8 on: March 27, 2007, 10:30:10 AM »

Those are all wonderful suggestions.  Ingenious, some of them. And the care you are providing is wonderful.

I have to add that as my grandmother became increasingly confused, until she could no longer remember who we were, getting out the photo albums was one way to help, as you mentioned.  She remembered better things happening 50 years ago than this morning. Added benefit we could identify some of the pictures (150 years of them!) and note some family history before it was lost forever. She also had a companion, Bill, who even though he was failing, went to visit with her every day, they would sit and hold hands, it was very sweet.
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« Reply #9 on: March 31, 2007, 11:23:39 PM »

Gwen came to Church with me by default today!
The lady who comes to care for her on Sunday mornings rang to say she was sick and unable to come. When I took Gwen her cup of coffee in bed, she asked me what day it was and I told her it was Sunday. She asked me why I wasn't going to Church, and I explained that Sue (her Sunday morning carer) was sick. She then said "Well, why don't I come with you then?" Gwen is Anglican, but has not been in a Church since her children were Christened 50 years ago. Her husband had a war veteran's funeral at a public crematorium chapel.
Anyway, we got ready and drove to the monastery. We sat in the Narthex, so that I could sit Gwen in one of the stalls and stand next to her (men and women stand on seperate sides of the Nave in the monastery Church). She sat in her stall with her zimmer frame in front of her like some dowager queen, and everyone made a huge fuss over her! The Priest made a special point of incensing her during the Magnificat and when he came out to distribute the Palms, he took two out of the basket and walked down to the Narthex past the people who had lined up. He gave one to Gwen and she said a in a loud voice (because she is partially deaf): "Thank you!" to which the Priest replied with a smile and equally as loud: "You're welcome!". He then gave me the other Palm branches and I kissed his hand, and when Gwen saw this, she said to the Priest again quite loudly: "Excuse me" and beckoned him with her hand. When he stood in front of her, she took his hand and kissed it! The Priest smiled and gave her his blessing, bowed to her and returned to the Bema to distribute the rest of the Palms. All eyes in the Church were on us, and a pleasant giggle passed through the congregation when they saw this exchange.
After Church, we went to trapeza and Gwen tucked in to the various seafood dishes on offer. One of the Faithful managed to find a wheelchair and they took her on a tour of the monastery grounds and introduced her to the monastery's donkeys, goats, cats, chickens. She had a lovely day, and is still smiling when we got home. She is sitting doing her knitting now with the Palms sitting on a side table next to her.
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« Reply #10 on: April 20, 2007, 05:49:03 PM »

Gwen came to Church with me by default today!

Dear George,

May God bless you for this obvious and humble service and your unconditional love.

My Aunt lived with me and my family from the first day of her Alzheimer's diagnosis and then for 4 continuous years.  She was my sanity during my insane growing up years.  She taught me to love God and the Church, to paint, to draw, to do needlework, to enjoy reading, and to garden.  I loved her so very much (and still do).  Ten years post diagnosis, she now resides in a Continuing Care Community in the same State as my brother, as she turned her care and financial management over to him a few years ago. 

A number of years ago, due to a special gentleman "friend" of hers who listened to her sorrowful tales, unable to distinguish the truth from the fiction, his chauffeuring of her to a lawyer (who did not believe she had AD) ended my being her caregiver.  I received this news via a legal document sent in the mail.  She was at the stage of paranoia at this particular juncture of the disease.  I will not bore anyone with the horrid and devastating details of that encounter.  I will only say that it was at that moment the door of my heart clanged shut and I descended into hell (a severe depression).  It was also at that time I "discovered" Orthodoxy.

Now it is many years later.  God brought me through hell, to His Light, and I am part of the Orthodox Church.  My dearest Aunt no longer is sure she knows me when I visit, though she knows me as one who loves her.  And I do...love her very much.  She does not remember the incident, the horrid things/names she screamed at me, nor the heartbreak.  For that I am grateful to God!  More so, that He has healed me as well and those things no longer matter. 

It is truly a gift of love to care for someone who suffers with this tragic disease or any kind of dementia.   

Love in Christ, Athanasia
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« Reply #11 on: April 20, 2007, 08:48:34 PM »

It's difficult, isn't it? But I think you're right, there's a lot to learn about not taking things personally. Gwen sometimes becomes suspicious/paranoid in her confused states and has accused me of stealing money from her etc. I really think that our "training" as Orthodox Christians helps get us through it: not counting the cost of love, not taking things to heart, seeing an immortal soul behind the confused mind...etc.  And the most important thing I think they teach us is that in the end, Love is all that matters, because only what has been turned into Love will live on in Eternity.
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« Reply #12 on: August 10, 2007, 12:52:47 PM »

BEATITUDES FOR FRIENDS OF THE AGED
By Esther Mary Walker
   
   Blessed are they who understand
   My faltering step and palsied hand.
   Blessed are they who know that my ears today
   Must strain to catch the things they say.
   Blessed are they who seem to know
   That my eyes are dim and my wits are slow.
   Blessed are they who looked away
   When coffee spilled at table today.
   Blessed are they with a cheery smile
   Who stop to chat for a little while.
   Blessed are they who never say,
   “You’ve told that story twice today.”
   Blessed are they who make it known
   That I’m loved, respected and not alone.
   Blessed are they who know I’m at a loss
   To find the strength to carry the Cross.
   Blessed are they who ease the days
   On my journey Home in loving ways.
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« Reply #13 on: August 10, 2007, 02:27:13 PM »

I echo others, George.  God bless you!

As I've mentioned here before a couple times, my wife's grandfather has senile dementia.  He's also bedridden.  He was given 6 months to live 11 years ago and I'm convinced that he's going to remain alive until at the very least his wife dies so he won't feel like he's abandoned her.  He's a "day person" and that's when he's most lucid, but there are times of lucidity at night here and there.  My mother-in-law is his primary caregiver and most of the time he's not the "problem"; it's her mother who would drive even the most patient person crazy! 

We have found that just simple conversation with him works best for his delusions and we always let him guide the conversation.  I think that's one of the major problems for my wife's grandmother in that she really just doesn't get that most of the time whatever her husband is saying is really nonsensical gibberish.  She tends to get agitated herself at his agitation (and her apparent helplessness in quelling his disturbances) and the whole thing just becomes one huge problem.

I do have a question for you, though.  Has anyone ever questioned their faith or been angry at God for "allowing" Gwen to live in her present state for so long?  I've had a few family ask me about this and I honestly don't know what to say without sounding either arrogant or judgemental and those are the last things I want to do.  The biggest question is, of course, "Why is this happening?".  I once heard a visiting priest from India say that one of the first things he learned in living among the people in rural India was that the question is not "Why" but "What?" as in, "What can I do, God?".  I've really tried to apply that to my daily life but I don't know how to express such a sentiment to people who are going through such a hard time.
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« Reply #14 on: August 10, 2007, 07:13:47 PM »

Has anyone ever questioned their faith or been angry at God for "allowing" Gwen to live in her present state for so long? 
That's the paradoxical thing. Caring for someone who is totally dependant on others for their care draws people closer to God, and this isn't just my own experience, but the experience of Gwen's other carers, and the experience of countless others I have met who are full-time carers for someone.
I think I partially understand why this is so. The image we are most presented with of the Theotokos is that of "The Madonna and Child" where she is holding the infant Christ. The other image of her which is very similar, but dramatically contrasts with this is the image of the Deposition or the Pieta, where she is cradling the dead, tortured, broken Body of her Son. The Pieta is the "logical" opposite of the Madonna and Child, yet, from a spiritual perspective, they are the same thing. Loving people in their brokenness is what God does, and we are called to be like God.

The biggest question is, of course, "Why is this happening?".
I think that God allows such things because He has faith in us.
"Why don't you do something about this God?"
"I did. I made you."
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« Reply #15 on: August 13, 2007, 11:03:53 AM »

Wonderful thoughts you have shared George. My prayers continue to include you and Gwen.

Thomas
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« Reply #16 on: November 01, 2007, 06:40:54 AM »

I have discovered yet another management strategy for restlessness: worry beads!
They work a treat!
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« Reply #17 on: November 01, 2007, 01:02:47 PM »

I have discovered yet another management strategy for restlessness: worry beads!
They work a treat!

What are those, and how do they work?
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« Reply #18 on: November 01, 2007, 06:04:03 PM »

It's a string of beads, widely spaced on a string or chain, and played with in the hand. In greek we call them "komboloi":

In Greece today, people who are giving up smoking often use them, but it's mainly the older generation which can be seen playing with them.
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« Reply #19 on: November 01, 2007, 07:41:37 PM »

Are these widely available in the States ? I might need a half dozen or so...

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« Reply #20 on: November 01, 2007, 08:00:51 PM »

Are these widely available in the States ? I might need a half dozen or so...
Yes. They are usually marketed as "worry beads", for example: http://www.worryknot.com/
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« Reply #21 on: November 01, 2007, 09:11:16 PM »

Grazie...
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« Reply #22 on: November 01, 2007, 09:23:00 PM »

Yes. They are usually marketed as "worry beads", for example: http://www.worryknot.com/

A chotki would work too, only pray instead of worry.  Same concept.
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« Reply #23 on: November 09, 2007, 06:46:17 PM »

My mother has Pick's disease,a particularly nasty and rare form of dementia.I truly feel blessed to have run across this thread.Lately she has been sinking deeper and deeper into oblivion.She hasn't been able to speak in quite some time but when she see's me I could tell that she knew me.My wife went last week and she did not know her or my son.I feel that I have been neglecting her because I haven't seen her in over a month.The reason is because it is so painful to me and I fear when I see her again she won't know me.I know this is cowardly and I disgust myself.But when I read the words written by the former poster,"....Loving people in their brokeness is what God does,and we are called on to be like God"I felt renewed and realized that I should double my efforts to spend time with her.May God truly bless the poster of these words(I'm sorry that I can't remember your username at the moment).Thank you!
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« Reply #24 on: November 09, 2007, 07:05:25 PM »

I think it's  because we are grieving for someone who is still alive- we have "lost" them, and yet we haven't.
This is where, I think, the Christian understanding of the immortality of the soul helps in understanding what is going on. Behind all the mental confusion, the loss of function, there is an immortal soul- the same immortal soul as there always was and always will be. The confusion and loss of function is simply the body failing (the brain is part of the body); and one Glorious Day they will be Restored, but until then, all we can do is cope with our loss and keep loving the Person inside the failing body.
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« Reply #25 on: November 14, 2007, 11:28:00 AM »

How True, George.  When we were caring for my mother with Alzheimer's as she deteriorated we found great things happening as well.  She entered the Orthodox Church and during her admission to the Church and for three hours after her chrismation she was alert, articulate,  and her old self again ( a true blessing from God). When she returned to  her prior state of the disease, my wife and I both told ourselves that her illness was meant to be for us a challenge to spiritually grow and to learn love, as we had both seen what God could do.  For the next months we did exactly that surrounding her with love and care and as a result when she reposed we were not sorrowed but happy that we knew she was with the Lord as we now knew she wished to be. Enjoy and love your  family while they are with you, make memories of love that will linger after they have left, and continue to remember them with the memorial services and akathists  of the church, giving alms in their name.  My grandson who is now 12 was only three when my mother died, but to this day he tells the 7 other grandchildren who did not get to know her about her warmth, love, and good times (taking time to watch cartoons together, sharing cookies and milk, etc).

In Christ.
Thomas
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« Reply #26 on: November 15, 2007, 04:37:29 PM »

I think it's  because we are grieving for someone who is still alive- we have "lost" them, and yet we haven't.
This is where, I think, the Christian understanding of the immortality of the soul helps in understanding what is going on. Behind all the mental confusion, the loss of function, there is an immortal soul- the same immortal soul as there always was and always will be. The confusion and loss of function is simply the body failing (the brain is part of the body); and one Glorious Day they will be Restored, but until then, all we can do is cope with our loss and keep loving the Person inside the failing body.


From what I have read, you are right about this. It's the day-to-day watching the person one has loved lose memories, abilities, knowledge until it's as though they are not there any more.  A friend told me that Bayley's book "Elegy for Iris" about the author Iris Murdoch's deterioration with Alzheimer's shouldn't be read if one is feeling depressed or down.   

I am deeply grateful that my parents who are in their 80's are still sharp and as active as they can be, with playing Bridge, doing craftwork and hobbies and both of them have computers and are on-line every day.

Ebor
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"I wish they would remember that the charge to Peter was "Feed my sheep", not "Try experiments on my rats", or even "Teach my performing dogs new tricks". - C. S. Lewis

The Katana of Reasoned Discussion

For some a world view is more like a neighborhood watch.
Tags: dementia elderly 
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