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Is This Real and Will Last or Just Another Cruel Hoax of the Disease?
NoSiblings
Posted: Tuesday, August 13, 2019 11:49 AM
Joined: 9/3/2016
Posts: 215


My 88 year old mom is in a skilled nursing home, Stage 7 Alzheiemer's, 100% dependent for everything, unable to walk, and being hand fed pureed foods when she does eat. She has been on hospice a month now. She has no other diseases such as heart disease, etc. She is on some anti-psychotics because of major violence and previously having to be placed in geri-psych twice. She's been on those for over a year now. She was also on 10 mg Aricept and 10 mg Namenda daily. We discontinued the Aricept and the Namenda both over the weekend. When I went to visit her yesterday afternoon, I thought she seemed more alert than she has been in months, and talked a little more. She once again allowed me to read to her which she once enjoyed, but had stopped wanting. Then just a few minutes ago the hospice nurse called me. She had been to visit my mom this morning, and she said she was much more alert and able to have some conversation. My mom even told her that I would be visiting her this afternoon.

Have any of your LOs experienced something like this? The hospice nurse did tell me that this might not last. If your LO experienced something like this, how long did it continue? Part of me wants to hope things are going to magically be better, and part of me knows not to get my hopes up as they will most likely come crashing down again.


Army_Vet60
Posted: Tuesday, August 13, 2019 11:56 AM
Joined: 6/21/2019
Posts: 458


The nurse is correct.

You need to take it one day at a time. At stage 7, the PWD's brain is in tatters.

You're getting a good fragment of her right now.

It's best not to have expectations at this stage.


NoSiblings
Posted: Tuesday, August 13, 2019 12:57 PM
Joined: 9/3/2016
Posts: 215


Thank you! I'm sure that's right. Back in earlier stages of 5 & 6 she would from time to time have a "good" day, and always I would get my hopes up that it would last even though I knew I should not, and every time my hopes would come crashing back down, and that hurts. Maybe that's one of the cruelest things about this disease for those who love the person afflicted. It's so hard not to have hope when you see even the tiniest bit of improvement.

I need to just take it as it comes. I had accepted the reality that my mom is going to die, and I felt that was not far away. I had come to terms with that as much as one can. So I have to keep my hopes in check. Maybe one reason this struck me with such force today is that today is my dad's 92nd birthday which he is celebrating in Heaven. He passed in November. He worried so much about my mom, and I'm missing him a lot today.


mostlyme
Posted: Tuesday, August 13, 2019 1:11 PM
Joined: 12/17/2018
Posts: 269


I understand that feeling of hope when things change for the better.  But sometimes it's real.  Medications can affect the Dementia brain differently as the disease progresses.  I sure found this with my mother.  

She is in month 3 of doing much better emotionally with a change in medication.  Prior to the change, she was unhappy, agitated, and difficult.  It is rare that she doesn't smile now.  

Those neurotransmitters in the brain (which Aricept and Namenda target) are messengers.  Who knows what has changed now that her chemical soup is different.  These chemical messengers can affect a wide variety of both physical and psychological functions.


SunnyBeBe
Posted: Tuesday, August 13, 2019 4:19 PM
Joined: 10/9/2014
Posts: 786


My LO is stage 7 (d) to (e).  She has VD, possibly mixed with AD.  Cannot sit alone or up by herself, needs total care.  Sleeping more and more now days. In wheelchair for a little each day now.  She is on Hospice and she still surprises me at time. After no speaking for months, one day, when I walked in the Hospice nurse asked if she knew who I was and she looked at me and said, "Of course."   We both were floored. I do not think she knew who I was, but, just that I was a friendly face.  And, then she said nothing else for months.  Months later, she said to me, "I love you too."  Then, nothing else for months.  She will go months with no real expression or focus and then one day, it seems like she smiles at me.  Not sure. It could be involuntary facial spasm.  But, whatever it is, I know that it's momentary and that she will likely go before too long. I pray for her peace and comfort. I know that she must be exhausted.
NoSiblings
Posted: Tuesday, August 13, 2019 6:15 PM
Joined: 9/3/2016
Posts: 215


SunnyBeBe, MostlyMe, and Armyvet thanks for sharing your experiences. Every case seems to be different, and yet they each seem to have some similarities too.
Army_Vet60
Posted: Tuesday, August 13, 2019 7:43 PM
Joined: 6/21/2019
Posts: 458


Yep, the way I look at it, we may all be on different paths, but we'll wind up at the same destination.
 
 NoSiblings wrote:
SunnyBeBe, MostlyMe, and Armyvet thanks for sharing your experiences. Every case seems to be different, and yet they each seem to have some similarities too.


selkirk60
Posted: Tuesday, August 13, 2019 9:57 PM
Joined: 1/11/2018
Posts: 93


Yes! It's real.  No, it won't last for long in Stage 7. Don't think of it as a cruel hoax either.  Think of it as a glimpse of the mother you used to know. I always took it to mean there was still a piece of her in there somewhere, that she wasn't totally gone, even though she was unreachable most of the time.  A spark of life. 

 My hospice social worker used to call me when she had a visit with my Mom and a few coherent words suddenly emerged out of nowhere.  She said those were gifts to celebrate and share when they happened.  Thank you for sharing yours. 

It's another step on the yellow brick road.  You can't go backwards, you have to go forward.  Enjoy it while it's here. 


lizziepooh
Posted: Tuesday, August 13, 2019 10:05 PM
Joined: 5/2/2019
Posts: 141


selkirk60 wrote:

Yes! It's real.  No, it won't last for long in Stage 7. Don't think of it as a cruel hoax either.  Think of it as a glimpse of the mother you used to know. I always took it to mean there was still a piece of her in there somewhere, that she wasn't totally gone, even though she was unreachable most of the time.  A spark of life. 

 My hospice social worker used to call me when she had a visit with my Mom and a few coherent words suddenly emerged out of nowhere.  She said those were gifts to celebrate and share when they happened.  Thank you for sharing yours. 

It's another step on the yellow brick road.  You can't go backwards, you have to go forward.  Enjoy it while it's here. 

What a beautiful way of looking at it...

NoSiblings
Posted: Wednesday, August 14, 2019 8:14 AM
Joined: 9/3/2016
Posts: 215


Selkirk, thank you! That is a beautiful way to look at it, and I will cherish it for the gift that it is for however long it lasts. For so long I've felt my mom was gone, and just her body was left behind with sometimes what seemed like a complete stranger inside. Thank you for reminding me that this is a gift. An opportunity to be with my mom one more time.
selkirk60
Posted: Wednesday, August 14, 2019 9:43 PM
Joined: 1/11/2018
Posts: 93


It seems very different looking at it once the journey is over.  During the journey, it seemed like my feelings jumped all over the place about how Mom was, even from one day to the next.  Living in that state of "OMG what is going to happen today that I will have to deal with" is so very wearing, it is hard to see anything beyond your own pain and grief.

One of my siblings totally checked out, emotionally, about 6 months before Mom died, said "she's not in there anymore".  He visited, and he sat vigil with me at her deathbed (which is not easy for many people), but he was not engaged with her at all.  Maybe he really did not believe there was anything left. Maybe he talked to her, etc., when I was out of the room. Maybe it was just too painful for him. 

The other sibling was the opposite: "Let's show Mom this picture and see if it stirs any memories" and "She just needs to drink more Ensure" as if recovery was possible, even long after those ships had sailed.   I guess he knew where it was going to end, but he was kind of disbelieving till the end. I guess he knew intellectually but not emotionally.  Or maybe emotion was just too overwhelming. We all cope as best we can.

I was in the middle.  Angry, sad, tearful, doing what had to be done, but never hopeful.  Then I thought, well, she's gone.  Not my Mom in that body.  But I kept seeing occasional moments of recognition and lucidity that led me to believe part of her was still there even though I could also see how far and fast she was declining.

Who knows?  Do what feels right to you, and brings comfort to you.  You can only feel and believe what's in your heart and it doesn't seem like we have much control over that. 

You are important too! No guilt.  However you feel at any time is okay. 


NoSiblings
Posted: Thursday, August 15, 2019 8:15 AM
Joined: 9/3/2016
Posts: 215


Selkirk, you expressed that so beautifully and so accurately. This entire journey seems like it has been one continuous "OMG what's going to happen next moment!" On Tuesday when my mom had talked to the hospice nurse when I got there in the afternoon she was deep asleep, but then yesterday she was awake when I got there. She was a little more alert and did talk a little more, but that's almost harder to see because it does make me glimpse her again and that is heartbreaking. It's almost better when I think there is nothing of her left, that she is already gone because when I see those glimpses of her it really hurts to feel so completely helpless to make anything any better for her. So like everyone trapped on this hamster wheel, I'll just go on taking it one day, one step at a time.
 
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