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Old 09-11-2010, 03:24 AM   #1
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Dementia and when the end is close..


I just recently lost my mother in law to Dementia and I was trying at the time to figure how much time she had left but no matter where I went I could not find anything, so I don't know if others are looking for the same or not but I will share the last 2 months with you all.
She had it for 5yrs everything has been ok with her except maybe taking her medicine and so on but she lived in an assisted living facility and she would take the medication and she was almost normal not that bad.
About 2 months back she lost her footing and broke her nose we asked her what happened she said she fell. Another 2 weeks go by and she fell again but did not hurt herself. The place where she was at said she wasn't coming down for her meals anymore and this was about 3 weeks after she fell, she also had a bladder infection and ended up in the hospital we went and picked her up she was talking and was ok but I had to dress her which was ok.
A week went by and my husband went and got her and brought her over for dinner she was using a walker and needed help to the bathroom I came out looked at my husband and cried I said what happened within the week that she can not do things anymore.. So the next week she was having accidents on the floor with going to the bathroom and she stopped going down for all meals so we stepped in and was there everyday trying to feed her she would still eat at this time but really did not want it. Within one week of this she was in depends we were force feeding her she could not put sentences together anymore... The last week and a half was the worse she completly stopped eating the only thing she would say was mama was totally scared of everything and all she did was babble like a baby... She went back to being a baby my sister in law is a RN and she said were not going to force her to eat her brain function is gone were going to put this in gods hands... I had a hospital bed from when my mother was sick and I told Jill we would set it up for her mother to come to the house, by this time we are wrecks crying non stop and were holding mom like a baby by this time... and she was having problems sleeping so we called hospice in and brought her home and 2 days later she passed away we were all here for her we had her hands at the brief moment of when she almost took her last breath she opened her eyes and looked at us all it was a sad but yet beautiful experience because we could feel her spirit lift away.... Any of you with a parent who has this, this is what to expect when it is close to the end its your decision if you want feeding tubes we did not because we knew she did not want them.
I don't know if this helps or not but I wanted to let others know what we went through it was very hard and draining but we loved her so much we would not leave her side and decided we wanted her at the house when she would pass away her last bit of food was 1 bite on a Sat night and she died Wed night... So I hope I helped someone who might be starting to go through what we went through just be strong and be there for your loved one....

 
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Old 09-11-2010, 07:50 AM   #2
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Re: Dementia and when the end is close..

Thank you for your experience Jane. It is helpful to know of other experiences. But we need to remember that each experience is unique. My Dad's decline took 6 months. My grand mother's started with a stroke and took over a year to reach the end. Yet some are gone very quickly.

The food issue is common at the end with dementia. The brain forgets. It forgets new experiences, then the older memories. It forgets where the bathroom is and how to use it, it forgets how to swallow and how to digest food. My Dad was actually eating but losing weight rapidly. In that last 6 months he lost from 184 down to 125 pounds despite the fact that food was going in. He ate scrambled eggs on Tuesday before he died on Friday. It was obvious that though he was still able to eat, he was not processing what went in.

I will say that I was so thankful for the help of Hospice. They were amazing, a wealth of information about Dad in particular because of his symptoms, and a great support to the family.

As for the feeding tube, I also chose not to go that route. Mom and Dad both have living wills which state that they do not want such measures. I also knew that it was useless to feed through a tube when it was not being process properly. I left Dad to higher powers. Now he is my angel

I do hope you find comfort in your grief knowing that you did all that was possible for your MIL. Each of us has a time on this earth to do the best we can and then we leave our mark on others when we leave. Carry your MIL in your heart. Take the best that she was and make it better

Love, deb

 
Old 09-11-2010, 12:36 PM   #3
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Re: Dementia and when the end is close..

Thanks Jane....I think one of my worst fears is that I do not have any idea what the end will be like for my Mother.

Will she go fast or slow? Will she suffer by laying in a bed without being able to communicate for years? Will I be able to understand her needs when she no longer is able to talk?

I hear alot of wisdom on this board. But this ugly disease gives us no rhymn or reason on the why, when or how of this disease. So I for one appreciate hearing both you and Debs stories it helps to subside a itty bitty amount of my fear. So thanks Ladies!

Love,
Julie

 
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Old 09-11-2010, 06:03 PM   #4
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Re: Dementia and when the end is close..

Julie, you said a mouth full of truth when you said ..... "this ugly disease gives us no rhymn or reason on the why, when or how of this disease." That is so very true! You learn to be resilient, flexible, and expect the unexpected. When you think you have it figured out... it changes on you. Beyond that your perspective of what has happen changes with time and you miss the obvious because you are always there.

Just hang with us, ask question, vent, and you will get through this just like the rest of us that have already gone that far have. Just know the disease will do what it is going to do in it's own time.... and if you have come this far you can make it to the end. You have already proven your strength and courage

Love, deb

 
Old 09-12-2010, 02:46 AM   #5
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Re: Dementia and when the end is close..


Hi Ladies,
I Just wanted people to know what we went through and yes and ugly disease, her decline was so fast it was unreal she was ok up until the final stage hit... I was all over the internet reading up on it and when I read her symptoms she was in stage 7 she could not communicate anymore and all she did was sleep, would not eat anymore this was terrible to see someone you love all of a sudden go downhill so quick.... I think we felt more pain then she did, it was heart breaking to see a vibrant beautiful 75yr old women go back into being a baby again, she just wanted to be held and thats what we did, and when she refused all food and water we knew it was a matter of time, she was down already to about 105lbs so we figured it would be soon. All we wanted was for her to be comfortable and to be at home and thats what we did. And I know each case is different with each person and it depends on there weight and if they drink water, she refused everything so we didn't force her and Hospice was great they relieved us to no end. I know deep down she had to remember us because when hospice would change her she would sit up and grab me and I would hold her how many times I balled my eyes out... When your going through this you need to be strong but its ok to break down too you have to or else it sends you crazy.
I actually found comfort writing about it and telling others what we went through it was like a release for me... Just be there for them and do the best you can please take care.... love janet

 
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Old 09-12-2010, 03:25 AM   #6
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Re: Dementia and when the end is close..

yes, Janet

Writing and talking about it does help a lot. And it's also a great support to others who are going thru it to know that they are not alone.

It does get better with time, so just keep posting.


k

 
Old 09-12-2010, 07:40 AM   #7
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Re: Dementia and when the end is close..

Thanks Deb!

 
Old 10-11-2010, 05:21 PM   #8
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Re: Dementia and when the end is close..

Thank you so much for your posting. I am new to this but found this website last month. My mother has been in a nursing home for 3 l/2 years. She fell 4 l/2 years ago, had a slight stroke, cracked 3 ribs, and broke her hip. My sister and I cared for her for a year sharing her a month at a time. She also lost the muscle ability to urinate and it was backing up into her kidneys therefore she was permanently catherized. We have seen periods of decline, periods of stabilization, etc. She recently was hospitalized after a respiratory infection went through the NH. Mom was the only one that did not bounce back. After 4-5 rounds of antibiotics she has slipped into the sleeping and hard to wake stage. She was on an appetitle enhancer that worked very well. My sister and I would leave her on it for a while and then take her off for a few weeks until the appetite dropped and repeat but the NH left her on too long and she developed some bad side effects the alternative did not work. So she rarely eats solids and has been refusing ensure and most fluids. Her stomach seemed very upset after all the antibiotics and the Dr. put her on an Acid Reducer but we were not notified. Her stomach has continued to get worse and she is complaining of some pain, breath smells sour, and rubs her tummy. I just found out about the new medication and looked up the side affects which include flu like systems, nausea, and abdominal pain. It is so hard trying to second guess symptoms when they cannot tell you or explain how they feel anymore. I have requested the med. discontinued and hope that this at least helps her pain. I know her appetite most likely will not increase but it is very hard watching her in pain. She has swelling in her legs & feet from being bed bound so long and recently her legs began to weep or seep fluid much like tears. They are giving her something for fluid but it is risky for her kidneys. It has been about 6 weeks since this began and I pray that she does not suffer for a long period of time. We have gone through the infections, halucinations, previously I spent 2 nights by her bed at the home giving water to the little boy she was imaging at the end of her bed only to go home and cry myself to sleep. It is very difficult to watch such a strong and independent woman become a shell of the person she was. But then, she will look at me with those kind eyes and smile and I can still she my mother, so it is hard. The Dr. indicated about 2 months ago he believes we are looking at less than a year and that Dementia is like waves. The peaks will continue to get lower and the valleys as well until the end. I think that is one of the hardes things, the peaks give you hope of improvement and then the lows dash that hope only for it to repeat all over again.
My great grandmother, grandmother, aunt, mother, and an uncle have all had this in their 80's. I pray for a breakthrough.
Tootyfruity

 
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Old 10-11-2010, 05:55 PM   #9
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Re: Dementia and when the end is close..

I am praying for a breakthough also. God bless you.

Martha

 
Old 10-11-2010, 07:34 PM   #10
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Re: Dementia and when the end is close..

Janet : Thank you for sharing your story. It's amazing how quickly it proceeded. I know the NH has told me that sometimes the last downward spiral happens very quickly, but there's no way of predicting how it will go. Your story may help me understand what happens next. Thank you for writing about what happened, even though it must be painful. (Hugs)

 
Old 10-11-2010, 09:22 PM   #11
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Re: Dementia and when the end is close..

I too appreciate your story Tooty. I am so very sorry you have to go through this but glad you found us here. I have been through this with my Dad. His decline was rapid as well and it is the next step for my Mom as well. The more I know the better I will be able to deal with the process... so thank you again

Love, deb

 
Old 10-12-2010, 06:03 AM   #12
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Re: Dementia and when the end is close..

I too appreciate all these stories. As Deb said, the more we know, the better we will be able to deal with the process.....we hope.

Love, Meg

 
Old 10-23-2010, 08:26 PM   #13
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Re: Dementia and when the end is close..

Thank you so much for your helpful post. I too am so curious about how do you know when the end is near. My mom too has had it about 5-6 yrs now. She is still not that out of it. She is in assisted living, she was in regular assisted living for three years, but now is in a dementia care unit. It does seem that all of sudden she got worse and weaker. She uses her walker less and now uses a wheel chair often. She gets good care and seems in good spirits. They are managing her incontinence. She still weighs 172 lbs. The doctor says she is a bit past the moderate stage. Each day I feel is a gift and never know when she could decline. When I read these posts, I begin to fear, but I must trust God. hope I can be strong for her. Please give me any insights on what you think caused her sudden decline. How does one know when the end is near?

Thanks again for your post. I am new to this.
Lorraine

 
Old 10-24-2010, 05:09 AM   #14
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Re: Dementia and when the end is close..

There is really no hard and fast rules about the progression of dementia. The declines seem to come suddenly, then you are on a plateau for a while, then you'll have another decline. And there's no way to predict what the next decline will be.

Just take it one day at a time, you will find the strength to do whatever you have to.

Take care. K

 
Old 10-24-2010, 09:09 AM   #15
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Re: Dementia and when the end is close..

Each day is a gift Lorraine. A gift to be enjoyed . Looking back changes nothing. Looking forward gains nothing. I believe in being prepared for what might come but the worry is counter productive.

Nobody knows when the end will be. I learned that with my Dad. I was told numerous times over the last 32 years that it was his end. He pulled through each time. When the end did come it was quick, with little warning. So I decided when he cheated death the first time Dec 7 of l977.... that I would appreciate and enjoy every day I had with him. He died March 5 of 2010. I don't question why I had him so long or why the end was so short. I am just thankful for every day I had with him.

Some go young, some go old, some go slow, and some go quickly. It happens in their time and not ours

Love, deb

 
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