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Old 02-16-2009, 01:28 PM   #1
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End Stage Concerns....

Hi
I read alot of posts on here but actually have not posted in awhile...
My MIL has had AD for about 10 years now...She has been in a NH setting since december of 2005 and was put on hospice in August of 2007 where she remained for 1 year. They did end up taking her off hospice in august of 2008 as she was really holding her own most of the time. She is definetley late stage 6 or stage 7. Since she got off hospice things have went downhill (no fault of the NH). She has had 3 bouts of pneumonia since January and has had to be catherized almost every day since then as well. They have been treating her with antibiotics....but they only seem to help for a day or two. She has recently lost weight and this weekend they started to "thicken" her drinks. She has only eaten pureed food for a long time. She seems to sleep ALOT more now...but does have some "good days".
There is alot more going on internally with her. Anyone else have any ideas on what comes next? She has been through so much already....

 
Old 02-16-2009, 01:48 PM   #2
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Re: End Stage Concerns....

I'm sorry for your Mom's state...but if you have been reading you know that as long as she is taking in nourishment she can live for a long while. The UTIs will take her down faster than anything else. Every one of them will take more of her energy and resistance. They are insidious demons that destroy what strength remains in their bodies. The resistance to infections gets weaker and weaker and eventually they no longer have the strength to fight off the infection and it will take over her body. If they can keep her strong you stand a better chance...but for what end?

I hate to sound down but...I know that pneumonia took my hubby's grandmother because she became weak from fighting it over and over again and finally she couldn't fight it any longer.....

The fact that they are thickening your mom's food is another sign that she is slipping father down. It says that she is having trouble with weight so they are thickening her food to try to get some calories in her to boost her weight some.

I hope that your mom goes softly into the good night. She will be in my prayers and so will you. I don't want her to suffer.

 
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Old 02-16-2009, 02:21 PM   #3
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Re: End Stage Concerns....

Sorry to hear about your Mom. It is difficult to wach them go so slowly. IBake is right, as long as she is getting fluids and any nurishment at all she can live for a long while. The pneumonia or other infection makes her weaker and may be what takes her. It takes so much out of them to fight off an infection that they do tend to slip with each episode. If they are thickening her liquid nurishment it might be time for a reeveluation by Hospice.

From here she may forget how to swallow and not be able to eat at all. By then the body has stopped processing the food that she is getting. Then it is just a matter of time...... sometimes longer than we would expect. As long as she is getting hydration it could take weeks.

I am truly sorry you are having to go through this. I too hope your Mom goes softly. I will keep you both in my thoughts and prayers....

Love, deb

 
Old 02-16-2009, 03:04 PM   #4
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Re: End Stage Concerns....

Teressa

I remember your earlier posting and then you disappeared. I'm sorry for what you are going through -- this is exactly the walk we just finished.

In our case, Mom fell due to de-hydration and weaknesses from a sedative given at night. She was put into a hospital for the dehydration but then we gave them her Living Will/Medical Directive. It simply stated:
Should I become incompetent or have a medical condition that is incurable and untreatable, nothing is to be done to prolong my life or delay my death.
From that point on, the answer was very difficult for my sister and I.

She was IV'd in the hospital. Hospice assessor told us to go visit their hospice center and we did. But they wanted money up-front for 30 days and we didn't have it to give them, so they wouldn't take my mother. Hospice NJ then called me and said that the hospital social worker told them that there was money there but that we refused to release it to anyone. They'd be willing to take my mother but they needed assurance that we would pay and I said we don't have any means to pay! -- they refused to take her.

We then found that they actually wrote up and enforced DISCHARGE paperwork and took her off of the IV but also called me saying they wouldn't release my mother to return home, which was fine because we weren't asking for her to be returned home, we could see how bad she was. They put her in a nursing home and she was there just about two weeks. My sister went everyday. We could see they made attempts to feed her.

We knew that for about a week before she went in, she was fighting my sister on eating. She wouldn't or couldn't swallow and she would throw her food off the table. She wouldn't drink her Ensure either and this was the last thing that they do. The hospice worker said that it does happen that their brain going into such a slow pace, almost like hiberation. As a result they don't feel hunger so they don't want to eat. Then they don't or are unable to swallow.

My mother laid there with her hands curled sometimes. She wouldn't or couldn't open her eyes and all she truly did for the last 2 weeks or more was sleep through out the entire day but there were times when she'd fight it and become very noisy which would disturb the roommate in the room, so then they would sedate her. So we weren't sure if she slept all the time because of the dementia's terrible end or was it the times they did sedate her. We just know we haven't seen our mother or any semblance or her for quite a long time.

I will not gloss over this. Her inability to eat and the resulting deterioration of her was not pleasant to watch. I saw her twice in the entire time she was in the NH. I just couldn't go and see her anymore. At far as my heart was concerned, my mother had died about 5 years ago. She has not been able to talk to us or say her wants or needs for 2-3 years.

It was heartbreaking but I know with her death in the early hours on Sunday, it was a release from the bondage of this illness. she is happy and at peace.

if you have POA, you may have to choose to make this hard decision when its clear that she can no longer process the food to retain its nutrients.

I feel for you. We've just been through it these last 3 weeks, we were lucky that we had the Living Will/Medical Directive

Love
Your CaringSister54

Last edited by caringsister54; 02-16-2009 at 03:10 PM.

 
Old 02-16-2009, 03:17 PM   #5
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Re: End Stage Concerns....

What she is going through right now happened to my Mom in the days before her death. She suddenly slept most of the time, she got some kind of infection that didn't respond to antibiotics, she lost a lot of weight. She had been on thickened liquids and pureed food for months. She died of the infection, possibly penumonia.

This could be the end for your MIL. If she is responsive, tell her you love her and it is OK for her to 'go.' and your husband should do the same. Sometimes they just hang on to avoid hurting us. Tell her she is going home and will be happy and healthy again.

Love,

Martha

 
Old 02-16-2009, 07:25 PM   #6
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Re: End Stage Concerns....

When Mom passed she was waiting for us to say our "thank yous" for everything that she-and dad-had done for us. When we figured that out, we did it. My hubby and I said all our thanks yous, and within 10 minutes Mom was gone.

We had already told her it was time for her to go and that we would be alright. But she was waiting for her Thank yous....

Mom always was big on manners.....

 
Old 02-16-2009, 07:40 PM   #7
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Re: End Stage Concerns....

hey I get so confuse with this.Im so much self-pity. I talk about my losses and no one posts back to me. I lost a son and hubby now. and people posts other people on my posts. im sorry if I sound upset. but I am. pity and more pity.

 
Old 02-17-2009, 02:47 AM   #8
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Re: End Stage Concerns....

Dear Disney,

I wrote about my Mom just to tell you how the final stages go, so that you would be prepared for it. Yet I know nothing can really prepare us for the loss of a loved one, especially this kind of awful disease. I do feel sorry for you and that you have to go through all this. I pray for you also, and for your mother in law. All I can say is there is life after Alzheimer's ... the person passes away and you gradually forget how deteriorated she was and begin to remember her in happier times.

God bless you!

Love,

Martha

PS I cannot find your postings about the loss of your husband and son here on this Board, but I am so sorry for you. It must be terrible.

Last edited by Martha H; 02-17-2009 at 03:08 AM. Reason: add PS

 
Old 02-17-2009, 03:53 AM   #9
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Re: End Stage Concerns....

Dear Disney:

I am sorry for your loss but please go back to the grief and loss area where you have been. I'll be over there and will explain.

Thanks

CaringSister54

 
Old 02-17-2009, 05:49 AM   #10
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Re: End Stage Concerns....

Martha,

This post was started by Terressa about her MIL. Not Disney. I believe she, Disney, became upset with us in January when you had your dream about your Mom and she felt no one responded to her about her husbands last day before he passed away. You, in fact did respond to her. And gave her your sympathy. In a very caring post.

I just wanted to help clear this thing up. I think we all try our best to respond to those who are hurting and need help. Sometimes we may miss something but we always try to "catch up".

Love, Chris

 
Old 02-17-2009, 05:54 AM   #11
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Re: End Stage Concerns....

Chris

We are all there for one another. I too was communicating with Disney on the grief and loss section. But she has vented before that no one seems to respond to her threads.

Its hard, we all do the best we can but there's only so much one can do. I explained that to her and hope that her pain can help someone else. I suggested that she go to the Cancer boards and try to help someone because that is what her husband went through.

I truly think she is still raw with pain as would be understandable. I just told her that our purpose is to help others walking through the dreaded road of ALZ and Dementia. Disney will be fine as long as she feels the towels of warmth and love surrounding her from all of us.

I understand under the grief and loss thread that its her birthday today, initially posted by DustyDigger, so feel free to go there and with her happiness today.

CaringSister54

 
Old 02-17-2009, 11:47 AM   #12
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Re: End Stage Concerns....

Oh, I see that I thought I was writing to the person who started this thread, Teressa. Sorry, Teressa that I got confused... it runs in the family (I hope not!)

Love,

Martha

 
Old 02-17-2009, 01:25 PM   #13
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Re: End Stage Concerns....

Chris..

I read all I can and know that I can't always respond but like you said I do try to catch up and hope that any words of comfort or joy that I might express to one be taken in by all in reference to their own personal situation.
Any morsel I read on these boards I take and tuck away for my own personal rainy days. The day will come when my own sweet mother will face her end stages and I hope I'll be able to walk through it with the grace so many others have shown.

I know that none of us is alone.
Love, Meg

 
Old 02-18-2009, 04:00 AM   #14
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Re: End Stage Concerns....

Thanks everyone for replying...
Strange how this thread seemed to get "hijacked"....
Well they took another xray on monday as it was 10 days since her last. It did show her left lung looking a little better so they ordered omnicef for another 7 days. She has been on antibiotics almost continually since the first of the year! I heard they lose their effectiveness after so much use?
She was a smoker for almost 50 years so her lungs are bad to start. This infection is from aspirating her food, which I know will never clear up. She is totally incontinent,wheelchair bound,still can talk to us on good days(though it makes no sense),some days eats nothing...others she eats half her plate!
She does have days of being almost comatose where they dont even get her up. This is like a roller coaster....Some days she is so bad they call us in...and by that nite she is up eating!
this disease is so strange....
thanks everyone for listening...

 
Old 02-18-2009, 04:55 AM   #15
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Re: End Stage Concerns....

Terressa
It is a rollar coaster ride. I don't know how many times in the past year Mom has literally been on deaths door in ICU for CHF/fluid build up. Then they tap the fluid off with IV or by needle and she rebounds. I have taken many a rides to the hospital thinking this is going to be the last. She is not going to pull through, but so far she pulls through everytime? This rollar coaster ride has been going on for years with Mom. She has days when she doesn't eat a thing then one day like tou said she will actually eat an omelette or something. She lives on yogurts and shake type drinks. Right now we are currently dealing with what looks like possibly another trip to the hospital for fluid build up. Her feet and ankles are swelled up I have been trying to get it under control with staying on top of her fluid pills but its a battle we are fighting. To much fluid pills and then she becomes dehyrated. I just want to avoid another hospital admission if possible she just got out in December after being in for 2months. All these hospital admissions plays havoc on the Dementia.
I too question the use of antibiotics Teressa my Mom has been on it almost straight for a year now. Off and on. When she was in the hospital last time she got that Cdiff which is either from antibiotic use or she just caught from being in the hospital?
It is a battle Teressa but hang in there!! I wish your mom and you all the best it isn't easy.

Love Pauline

 
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