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Old 01-28-2008, 11:25 AM   #1
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Mom Has End Stage Dementia

Hi,

We recently learned our 91-year old mother has end-stage dementia and is refusing to eat. The doctor claims that she is not aware she's starving herself, although we're not 100% sure that's the case. The doctor won't put a timeline on it and said many people live far longer than expected.

Has anyone else experienced this with a family member?

 
Old 01-28-2008, 11:37 AM   #2
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Re: Mom Has End Stage Dementia

It's amazing she got to 91 and only JUST got diagnosed with end-stage Dementia! I'm so sorry for you and your family to get such a shock diagnosis!


However, Mom IS 91 and it's more than likely her 'time is up' regardless of the diagnosis. With her refusal to eat, it's her body's way of saying "enough is enough". She's not hungry, and to force feed her will only increase her pain levels (and it is painful, I've seen the dying force fed, it's quite horrible).

Ensure she get's adequate mouth care (a moist sponge every few hours around the teeth and cheeks) vaseline on her lips to keep them moist, move her position every 2 hours *just slightly* and, sadly, let her go. It's the kindest thing you can do. Anything else will cause pain and a lingering death.

And your doctor is right, he can't put a time-line on something like death .. because each person is unique so is their end of life, however I just recently had a resident pass away who hadn't eaten in 2 weeks. He was put on a syringe pump for pain relief and passed away 5 days later (from experience, everybody else who has ever been on that syringe driver has lasted 2 days).

As somebody told me when I asked "when" ........... ** How long is a piece of string? **............... oh

Sit with her. Hold her hand. Talk to her. Tell her stories from when you were little. Remind her that God's Garden isn't so far away now, and that when she's ready, you will all be ok, but it's time for her to go to her family, her Mum and Dad are waiting for her as is anybody else who has passed on before her. Let her go. Let her be whole and pain free again.

Cheers

 
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Old 01-28-2008, 11:53 AM   #3
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Re: Mom Has End Stage Dementia

Hi,

Thanks for the nice words. Mom was actually diagnosed with Alzheimer's a few years ago and then Picks Disease because she was having outbursts. The doctor finally realized that she was very aware of her situation (in assisted living) and was angry so he backed off on the Picks diagnosis. At the same time he diagnosed her with dementia which was about 2 years ago.

We moved her from assisted living to the nursing home section 1 year ago. She's declined rapidly and requires 2 people to move her. She has short-term memory loss and her standard response for everything is "To hell with it." This is totally unlike her.

I live 5 hours away and visited her this weekend. I was afraid I wouldn't recognize her physically but she looked the same. The only way to get her out of her standard response was to sing. When she knew the words she sang along. She kept watching me - staring at me - the whole time. I can't be sure she knew who I was. She didn't move her limbs the whole time and barely opened her mouth. It was a difficult visit in that I had hoped for more recognition. Saying goodbye was hard because there was no hug in return. She doesn't like anything on her mouth so my goodbye kiss was returned with a tiny little shriek.

I know she's going to a better place to be with my dad and the rest of her family. It's hard to think about, and watch, as we wait for that to happen.

 
Old 01-28-2008, 12:45 PM   #4
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Re: Mom Has End Stage Dementia

I am so sorry to hear this is happening to your Mother.

When my Mom stopped eating, we did exactly as angel replied. We kept her mouth moist with the special swabs, blistex or vaseline on her lips, and just quietly stayed with her. She lived ten days after she stopped eating and drinking. She got so dry we had to have an IV for glucose only, her mouth was in a terrible shape, and we had no choice but to add the IV. She never spoke, just a blank look. I felt like she knew us at times, and what time I spent those last days are a much needed comfort to me now.

After watching my Mom go thru this, I would never want a feeding tube for me or my loved ones. Sadly, it is your Mother's time, her body is signaling that this is so in many different ways.

Please know that I will be thinking of you and your family, DeeDee

 
Old 01-28-2008, 01:08 PM   #5
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Re: Mom Has End Stage Dementia

I am so sorry. When Mamma passed, she stopped eating on Friday and she finally passed on Thursday evening. We used the special swabs for her mouth and a washcloth for her face and morphine for pain control and that was it. It was the hardest thing I have ever done, to let my mother go. I wasn't and still am not ready to have let her go. There are questions that I haven't asked and things that only she knows. Ahh, I guess that those mysteries will have to wait. But I still wasn't ready to see her leave me. Somehow I didn't want to be the older generation.....

 
Old 01-28-2008, 01:22 PM   #6
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Re: Mom Has End Stage Dementia

MY PEEPS -

Please consider that the post from angel_bear - as she is not a bear - just a real-life Guardian Angel for patients and caregivers alike. For a person in her capacity to have the compassion that she has and hasn't become calloused to the condition - she must have wings.

You are commended for visiting Mom - as I see my spouse every day and seldom do I see a visiting relative for other residents except during Xmas. In our country we valued life so preciously that we make a 'long journey' - longer.

Death can be devastating for the family members - but it is just another destination - and she will only have to experience it once. No more suffering - no more meds - no more thirst - no more rigidity. Time to hold hands, speak slowly and softly and give her hugs - the only medications that a physician can't write - but you can.

 
Old 01-28-2008, 01:30 PM   #7
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Re: Mom Has End Stage Dementia

Yes. My mother reached that stage in April 07 and lived until nearly the end of December of the same year. She wasted away to 75 pounds. But she was not in any pain and seemed quite satisfied. She just didn't want to eat, and what little she ate was not being 'processed" (digested).

She was 99 when she died, and I think maybe a younger person would survive longer.

Hope this helps.

Martha

 
Old 01-28-2008, 03:46 PM   #8
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Re: Mom Has End Stage Dementia

Thank you all for your thoughts and kind words. Mom is on a pain patch and off all other meds. Our hope is that she doesn't suffer as this progresses.

Thankfully my two brothers are near her and visit often. While I'm happy that she's going home to God, her family and my father, it's still difficult as you all know.

I'll pass on the information to my brothers about the swabs for her mouth. Thank you so much for letting me know about that. Her face did look red and it looked like they applied vaseline to it - I'm guessing for dry skin.

Martha H - I'm so sorry for your loss. This was very recent for you and even though your mom was 99, it's still difficult.

Rekem - It sounds like your spouse has dementia. How long has he/she been ill? Also, I snuck my fingers into mom's hand and later during the visit I noticed she was actually squeezing back - that was a real joy.

Ibakeandpray - Losing my dad 5 years ago was hard but losing my mom will be harder. It sounds like your mom passed away very quickly - I'm so sorry for your loss.

Angel_Bear - You are a guardian angel and the timing is perfect. For the past few months I've had a desire to start collecting angels. The idea came out of the blue and maybe it isn't so much to collect angel figurines, etc. but to meet you and the others in this forum. We all need angels to lift us up. Thank you for helping.

Last edited by mypeeps; 01-28-2008 at 03:48 PM.

 
Old 01-28-2008, 06:23 PM   #9
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Re: Mom Has End Stage Dementia

I think the trouble is when Mum and Dad pass on .. we turn into the grown ups.

I don't want to be a grown up. Not *just* yet

 
Old 01-29-2008, 06:58 AM   #10
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Re: Mom Has End Stage Dementia

Don't want to grow up, didn't want to be an orphan. Didn't want to be the elder generation. I don't want to be responsible...There is too much that I didn't get to ask my mom and now she's gone. Just doesn't seem fair....

 
Old 01-29-2008, 10:54 AM   #11
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Re: Mom Has End Stage Dementia

Quote:
Originally Posted by ibake&pray View Post
Don't want to grow up, didn't want to be an orphan. Didn't want to be the elder generation. I don't want to be responsible...There is too much that I didn't get to ask my mom and now she's gone. Just doesn't seem fair....

I LOVE it ibake&pray. You've got my feelings exactly right. I just don't want to be responsible most of all. Its so hard on my heart. I want to be 10 again. We were poor but everyone was in their right place. The world was right.
Growing up can be the pits.

 
Old 01-29-2008, 11:41 AM   #12
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Re: Mom Has End Stage Dementia

Quote:
Originally Posted by ibake&pray View Post
Don't want to grow up, didn't want to be an orphan. Didn't want to be the elder generation. I don't want to be responsible...There is too much that I didn't get to ask my mom and now she's gone. Just doesn't seem fair....
Ibakeandpray - My one regret is not getting to know who my mom really is. I learned a lot about her as I got older but I know there is so much more that I don't know. The same with my dad. There was so much I never knew about him and then it was too late.

Angel_bear - I think in my case it's not so much being the grown up but trying to imagine living without my mom being here. It's never easy.

On the up side, I called my mom this morning and she actually sang me a song so I have to believe that my visit last Friday did have some impact. But there is some irony in that the song was "Hail, hail the gangs all here. What the hell do we care? What the hell do we care?" I don't know what made her sing that song but I just had to laugh that she initiated the singing. When I sang to her she listened (I think) but did not join in.

To all of you out there whose parents are still able to have a real conversation, take the time to get to know them. Learn who they are as people, not just mom and/or dad. Once the opportunity is gone you'll wish you knew more about them.

Hugs to all.

 
Old 01-29-2008, 02:13 PM   #13
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Re: Mom Has End Stage Dementia

Having just lost my Mom one month ago today, I am readng a wonderful book. It is called Midlife Orphan. Excellent book. I am also reading one called Feathers Brush My Heart. Amazing stories.

I bought the second one because I had a 'feather' episode after returning from Mom's funeral. A red feather appeared on the lap of a china doll I had named after Mom.

Books like this help in the grieving process, and prepare us to be the older generation when our sons and daughters have to go through this .. to prepare them better for it, as it is inevitable.

At Mom's funeral one of my cousins said there is an Asian proverb that goes something like this:

'A happy life is when first the grandfather, then the father, and then the son dies'.

Going by this I have had a very happy life.

Love,

Martha

 
Old 01-29-2008, 03:22 PM   #14
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Re: Mom Has End Stage Dementia

One of my best memories is of my Mom at the last was singing Amazing Grace, it was so wonderful to hear that. She had a lucid moment, then suddenly she thought her father was with her, he was a minister, hence singing the song.

I will never be able to hear that song again, never to enjoy it like she sang it that day. DeeDee

 
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