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Confusion, Delirium, Dementia: Where is the person I knew? 
Started by KathCull_admin
14 Dec 2014, 1:33 AM

This thread was started in response to conversations on But who advocates for me? this past week.

I could deal with his confusion and all that, but the hostility is so hard. I know that he doesn't really mean what he says, and that he is sick and miserable and unhappy. But it is hard,” wrote Frustrated.              

Jimmie responded, “There is a part of you that can't help being hurt and broken by such abuse.  Nevertheless, for me, there are still restorative times.  She is as lovely at such moments as she ever was and my heart is broken all over again but softly, softly.

Later Nouce wrote, “Just today everything seems to have gotten worse for him--worry and forgetting and frustration. Will we wake up tomorrow and have it still be worse, or will some rest give him a bit more "presence"?

In the article about Confusion, Dr. Mike Harlos writes, “Patients are often upset by their own confusion, feeling that they are losing control over their lives, or are at risk of losing their dignity. Confusion is also upsetting to family members, who may feel like they’ve lost a member of the family even before that person has died.”

What helps when you are asking yourself as Xenia did, “Where is the person we wed or knew a few years ago?”

Katherine 

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Reply by JennJilks
14 Dec 2014, 2:11 PM

BOOK REVIEW: Dementia Beyond Disease

 
By Dr. G. Allen Power

Dementia Care has changed and is evolving. Unfortunately, we still follow the medical model, treating symptoms, rather than modifying our approach as those with dementia symptoms' abilities change. This author has proposed some thoughtful changed to the ways we manage the care of patients with these symptoms.

This is an excellent book. Groundbreaking ideas.
I was sent a copy to review, and pruned all the important details for my friend whose mom and dementia.
Partly, we must change our perceptions and this will change our reactions, and those of our loved ones.

It is vital, as well, to understand that people can have dementia AND delirium and the former can cloud a diagnosis of the latter. My late father was in the ER with delirium from a UTI, masked by his dementia symptoms. He was released from the ER without a diagnosis, and delirium can be cured.

Delirium - we ignore it, or remain ignorant

 

One of my big complaints about my father's visit to the ER on the day of my mother's funeral - was not that he didn't receive great care. However, often the ER isn't always the place where adequate or accurate diagnoses are made. Especially for seniors with increasingly complex comorbidities.

Dad had delirium, which was masked by his dementia. 
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Reply by Xenia
04 Jan 2015, 10:56 PM

Hi Katherine:

I just wrote a story on who advocates for me about John and his dementia and all that has happened in the past few days.  I am so mixed up, pepared for his passing but not this different man, a man who is angry, hurtful and not safe to be with.

I will have to reread the messages as I am crying too much as I and family had such a hurtful weekend that I am jut letting it all pour out until we find some place to place John and know we did the right things.

Thanks for your messages and all the help from this group.

Xenia 
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Reply by KathCull_admin
05 Dec 2015, 4:53 PM

Little did I know that when I started this thread a year ago delirium would visit my family. 

A few months before my husband died, he had a fall. He did not lose consciousness or seem to have serious injury at first, but a day later he became confused, paranoid and had hallucinations. An xray revealed a fractured femur (broken leg).

Despite surgery to fix the break, he continued to be confused - but also very determined to come home. It was so hard to try and explain that he would not be able to come home until the confusion cleared.

Later he told me it had been overwhelming for him when I said "you can't come home". He didn't hear "until the confusion cleared" and thought I was casting him off. I think that was one of the darkest times in my life - the confusion yes but to know later that he thought he could never come home. 

Thankfully we could talk about it and make sense of it - I know that not everyone has that opportunity. When someone is delerious, confused or has dementia they do not always understood the intentions of those who support them. As Xenia said, in the midst of our sadness it is so important to know that we do the best we can to get it right.
Katherine 
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Reply by Xenia
08 Dec 2015, 5:17 PM

Good Morning All on a Blustry and very raiy day out West:

Reading these messages took me back to a year ago when my husband was going through many of the symptoms you speak of.  Also our family like you were at a loss as to what had happened to dad and I was at a loss to understand the change in my husband.

John was such a good patient, I did palliative care for 18 months with him, was considerate, asked for nothing.  The caregivers who came to bathe him twice a week loved him as he was kind and easy to work with.  Then a week or 10 days into the end of December and into the first of January he started to wander at night, was hard to understand his wants, his inability to stay in bed or his chair for any length of time. He had a fall a few days before that, tried to get up from a chair and fell on top of me with his walker, I was lying on the sofa and jumped up just as he came falling down.  Got him to bed but noticed a change in him.

About 15 days before he passed away he became very adjitated one evening.  Got out of bed and wanted to go out.  We lived on the top floor of our condo and the exit was at our back door onto stairsleading out of the building.  I tried and tried to reason with him and somehow managed to phone for an ambulance and my daughter to come.  No ambulance, long story as the operator thought he was dangerous and they sent 3 police cars.  Daughter came and stayed with us for the evening and next day the doctor had John admitted to hospital through ER.  Reliving this is hard as he kept saying to me:  I know what you are doing"  All reasoning just wouldn't be heard.

When John was in hospital the said to myself and my daughter, when he came around from his espisode, " Take me home and if I do this again you can put me in the hospital and I will stay."  He knew we were trying to get assisted living but there were so few places available.  Alll in all John stayed in hospital till he passed away.  Our hearts were breaking when he said take me home...I still cry about that as I knew I could not.  The doctor told me I had to leave him there as I could no longer care for him and it was dangerous.

John had a stroke the 2nd last day of his life.  I had been there for most of the day, fed him his chicken soup he loved, went home, son in law came in the afternoon and was with him.  That evening he was up to the bathroom and the nurse noted he was very ill.  He had a stroke.  We were told he would not live the night, etc. etc. We stayed most of the night then went home,.  I stayed home the next morning prepared to be back shortly, two daughters went ahead and were with John when he passed away.  I came a short time later and as a family we had been with him at this time, even though I was not there at the time of his death.  Our girls held his hand and comforted him at his time of passing.

 I thank our higher power they were there and he was not alone. John  did give us the best gift of all the night before as the doctors told us John would not know us when we were by his bedside.  We sat and sat then I asked: John do you know who I am, out of his mouth came the words: Yes, you are mooch, my wife"  Then he sat up by pulling himself on the side of the bed rails and kissed the girls and shoke my son in laws hand and lay down.  We thought for sure he would rally and be there next morning, however this was not to be.  We spoke to the nurses and doctors about this and they too could not tell us why he had the strength to pull himself up and give us this last gift of saying he knew who I was and giving the girls a kiss.  

This was his greatest gift to us and we will remember it always.  We will forget the dimentia that changed him from a kind and considerate person to the person he was that fateful day when his life changed as did ours.  Not being able to understand the "Why"  "Why".  We think perhaps he had a small stroke that night or whatever but we did see dad as he was before this sad episode on the night he sat up and helped us accept his eventual passing.  I will always remember this gift and now that the anniversary of his passing. January 10, is coming up I and the children will remember dad and his final gift to us.  Letting go of life and giving us the comfort of his reaching out one last time before he left us forever.  

As Katherine said we can talk and make sense of what had transpired and know we did do all things possible to help our loved ones during their confused times and our bewildering moments.

Take care.

Xenia

 
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Reply by KathCull_admin
10 Dec 2015, 3:18 AM

Thank you for sharing Xenia - it brought me to tears - but that's okay, that's good. I so appreciate the comfort of my friends in this community.

With warmth,
Katherine 
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Reply by Razz
13 Dec 2015, 1:47 PM

Thank you Xenia for this wonderful post.  I was so glad to read about how blessed you were to recieve that final gift from your husband.   No one wants to go through the "hard times" but so often when we least expect it - we get a little blessing that makes it easier to go on.  

I'm struggling with my mother's increased dementia.  I'm very lucky in the fact that she is in a facility where she is well looked after and that burden of worry is not there.  Oddly, however, it's left me with the job of just being her daughter and I'm floudering in that grey area of what to do and when and how.  

Although on first brush it appears that Mom is lucide it quickly becomes obvious that it's only to a certain degree.  For the most part she still recognizes people; once she's acknowledged them that seems to be the end of any interest she may have in them.  Mother who always had plenty to say and then some no longer talks.  After that first hello she becomes fixated on something else - usually the TV but it can be a magazine and yesterday it was reading the clock.  Questions, no matter how you word them, are now always answered with "yes".... even when the question requires a different kind of answer.  For example I took in a couple of photos to put into her album yesterday.  One of our oldest daughter and two of her great-grandchildren.  She had such a confused look on her face that I pointed to our daughter (who is one of two favorites of hers) and asked her who she was:  "Who is this a picture of?" - answer "Yes".  Try again .... "what is her name?" - answer "Yes."   She is no longer processing what is being asked of her so she gives the same answer and I would imagine for most questions that just might work.  Ask her no questions but try to engage her in conversation just doesn't work.  She turns her head away and fixates once again on something in her line of vision.  It is if I am no longer there, like I have left the room.  She so often looks surprised when I say good-by as if she forgot I was even there in the first place.  

I've heard so many stories of very difficult times people go through with their loved ones with dementia that I know that I'm very lucky.  For the post part she is agreable and complacent....but she's "not there".  After all these years it's such a very strange thing.  I now dread these visits and find myself going less often and for a shorter time.  I'm just at a loss ....like I no longer have a "role" to play.  It's as if she's "gone" even as she is still with us.  

With Christmas coming a lot of folks are interested in how my Mom is going to fit into our plans.  This will be the first year where she does't really.  Family are allowed to join their loved ones if they wish on Christmas Day for dinner and my husband and I will do that.  I know that it's something that I'll be doing for "me" as I doubt very much if it will register at all with her. The grandchildren ask me what to give her and I answer just a card and maybe a photo or two.  Those are the only things now that cause a "glimmer" of awareness and anything more would be a waste of their time, money and efforts.  How sad it is that it's all come down to this.  She is lost in her own world and I don't live in it.

Razz  
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Reply by Nouce
13 Dec 2015, 6:37 PM

Greetings, all,

Pablo grows continually more discouraged. The path to the end seems to go on forever. While his abilities decline and his range of options narrows. Today when I was eating lunch with him, he asked me if he could come home and take a nap on the couch.  I said, "No, because I can't get you up off the couch." But I wish I had had a better answer.

His awareness fades in and out. Thanks to all for sharing your struggles, especially at this time of year. At this season it is a good thinkg to feel the comfort and companionship of others who are part of such a journey.

Nouce 
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Reply by JennJilks
13 Dec 2015, 8:26 PM

This is a tough time of year. 
Don't let that colour your thinking, though. This is just ONE Christmas. It is not all of them, just as this is just a part of your life, and not the whole of it. This, too, shall pass.

Sometimes, the discouragement is all part of the end-of-life, not discouragement per se. It is very difficult to tell the emotions of people at this time. 
My late mom changed so much. It just wasn't her. She was, perhaps, resigned more than discouraged. At least I hope she got there. No one was honest with her, either, except me. They all enabled her to think differently about her position.
She passed over on Mother's Day w/e and it's hard not to associate it with her death. I understand this.
This is the time when you come to terms with your husband's life, and look back at your achievements and who you were as a couple, not mourning your death. It can be a celebration of life at this time, as we all aim for at their memorial services, before they pass over.
Can you try digging up happy memories? I so wish I'd done this with mom.
All the best.
 
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