life expectancy for those with dementia
Carrie

Honolulu, HI

#61 Oct 4, 2010
To Alice
Yes, this also is my concern for my husband.(83) I am in a location with no family support. So pretty much strictly alone with his care.
His cardiologist told me he had a patient around the same age and stage of my husband. The family came and moved her to a care facility in their State. She could not deal with the changes and within a month she could not function even to feed herself. However, some do quite well, so it is a gamble.
My husband became an old man, it seems over night after his stroke in March. Until the stroke, his mind was as sharp as a 25 yr old.
I have been researching and it seems some who have the stroke induced dementia do come to a plateau. I am hoping this to be the case for him.
Some days are great, and I think this to be the case, then the next day he gets up and I have to show him where on his face to place his hands to put in his contacts.
Sandy

Little Rock, AR

#62 Oct 6, 2010
My mom was diagnosed in late June and it turned into a family mess with my brother (who only sees her a couple times a year) taking power of attorney and complete control of her, her home and her bank account. I live three blocks away from her. After a court hearing I got temporary custody of my mom and had all her belongings put in a trust where neither he nor I can touch anything. He put her in an assisted living facility an hour away from me and I managed to get her in one just a mile down the road. She is miserable and wants to come home. I think she would be okay for a while longer in her home with me checking on her and the doctor said I could try it but she needs 24 hour care. Well she doesn't get that in the level one assisted living center she's in. Any one have any experience trying this? Her short term memory is really bad - 1/2 an hour ago, etc. I can go by and give her medication, etc. She has never 'wandered' away, I've disabled her car, what else can I do to make her home safe? I have to work because we bought that darned house three blocks away last year and now I have to work to help pay for it. I never saw this coming. Any help or words of encouragement are appreciated. Oh, and my brother now only comes by to see her for an hour every other week or so. I'm back to being on my own.
Carrie

Honolulu, HI

#63 Oct 6, 2010
Sandy

Not an easy place to be. I was in the same with my Mother 4 yrs ago. She came to me to die, I knew as soon as she stepped off the plane, this was her plan. No words spoken, but I knew. All my brothers and sisters could agree on nothing, you will not make them all happy so do what is best in your mind for your Mom.

At the end, my Mother was in an assisted living, one mile from my home. It seemed the worse she became, the less care and attention she received. I brought her home and hired full time help. Between hopice and the nurses and me, there was always someone with her. There are nursing facilities, that will provide in home. And it ended up being less expensive than the cost for assisted living. It sounds like you Mother does not need a full time RN yet, but a full time care giver.(when at this stage, they are not safe alone, my Mother would put stuff on the stove and forget and one time she put a cup in the micro wave for 15 mins.) Perhaps student nurses? Or again try a care givers employment agency. Most States have licensed care giver programs.

Sandy

Little Rock, AR

#64 Oct 11, 2010
Carrie, I thought I'd replied but I guess I didn't hit 'post comment'. I may have found some help and plan on bringing her home at the end of the month. Turns out the new 'drug person' at her assisted living facility gave her the wrong medication this past weekend and it really messed her up. I thing she'll be better at home with some help. At least I have to try. Thanks for the incite. I never thought of a student nurse but there is a great school right here. Thanks again.
RoseAnne

Lexington, MA

#65 Oct 11, 2010
One thing to watch for is Urinary Tract Infections, especially if she seems like she's "lost it" over night.

The first sign with my mother was her sugar levels. She always had her diabetes under control and when she couldn't get her sugar level down for a day or so, and really started seeming more crazy, Poof! It was a UTI.
jodi

Lansing, MI

#66 Nov 1, 2010
msssr wrote:
My father has dementia and I believe he's in or close to the final stages. My question is about Hospice. Has anyone asked for hospice for a dementia patient and "qualified" for it? I've been told that dementia is considered a terminal illness but our doctor doesn't seem to be in favor of putting my Dad in to Hospice. We're still looking into it. Would like to hear of any similar experiences.
my mother is in a woderful facility at end stage dementia. the nurse did briefly bring the word hospice in our conversation. as her medical decision maker i need to know if this is the time. i am going to meet with her team care givers and sort it out. it is very hard to decide. i do work in the medical firld with knowledge but when it comes to your loved one well..... jodi
Susan

Skipton, UK

#67 Nov 2, 2010
Just come back from seeing mum - she is in a lovely nursing home. I cry every time I come home from seeing her. She has been diagnosed with Altzeimers for 11 year. She is now end stage - and has been for 2 or 3 years. She knows nobody and can do nothing at all except swallow the food that is put into her mouth. Like many others I pray that she will die in her sleep but god does not listen.
RoseAnne

Lexington, MA

#68 Nov 4, 2010
3 weeks ago, I thought, this is it. She should be gone within 6 months. Her wonderful nursing care facility suggested hospice. It was great, while it lasted. She's doing so well, we've decided to take her out of hospice and she'll be back in rehabilitative physical therapy.

Hospice is a wonderful choice, you can't be wrong. She'll get wonderful one on one care and you'll have someone who really listens to your concerns. They are there for you, as much as for her. Maybe you'll see an improvement, it'll make you feel better. If you find it's "not time", then you take her off hospice.

We all feel we need to make the "right" decisions. I'm not sure we can actually make any "wrong" decisions. It's all in God's hands.
Linda

Poughkeepsie, NY

#69 Nov 4, 2010
My mother in law has dementia, don't know what type as my brother in law will not allow her to be seen by a doctor. They live in an apartment above mine, two family home. I bring her meals to her every day and bath her when I can get her to agree to it. She has not known who anyone is for about 3 years. I get her to take a bath from time to time but have to approach the subject very carefully. She can move around on her own, needing some help stepping into the tub. Her health seems to be good for a women of 83. I check her when I change her clothes for any signs of sores or spots on her skin. I'm wondering if any one else has been in the position like I'm in. I have tried to talk to my brother in law about having a doctor come in but he wont have it. My husband is afraid to push his brother on the subject of doctors. He's worried that the door will be locked and we wont be able to check on her like we are now. Any thoughts?
Southern

Lehigh Acres, FL

#70 Nov 16, 2010
Well, if you look back to May 30, you will see my first and only post to this forum...until now.

By July, there was little doubt that she was entering stage 7.
And then.......
On July 22 she was diagnosed with Lymphoma of the brain.
I made the hardest decision I ever made in my long life...
I elected not to treat the cancer.
I "might have bought her 6 to 9 Months more.....Although for much of that time she would have been unaware of her surroundings.
We had both expressed a wish to not ever be a "vegetable'... and that is what the neurosurgeon warned me of, if they were to radiate.....

She Passed away quietly and pain free, at Hospice House on August 17.
Even knowing that it was inevitable, with Stage 6 behind her, I loved her very much and it tore my heart out.
It has taken till now before I could write about it....and even at that I am tearing up as I write.
She was the kindest, gentlest, nicest person I ever met in my life.
We were lovers, spouses and best friends for 42 years.
It really was no "burden" to care for her.
It was a duty and an honor.

I feel so sorry for you whose loved one has had a distinct personality change. My wife was still the same person when she died as when I met her.
She just couldn't remember when I met her and she could no longer do things that we take for granted like talking on the phone.......But she was still my girl.

I will always miss her and I will always love her.
I may learn to live with it, but I will never "get over it".

We were so lucky to have lived such a great love story.

I leave you folks with my hope that it will work out as good as it possibly can..
And I join you in prayer that someday, soon......they will find a cure/preventative for this hateful disease.

God bless you.
Lisa

Orlando, FL

#71 Nov 17, 2010
Southern wrote:
Well, if you look back to May 30, you will see my first and only post to this forum...until now.
By July, there was little doubt that she was entering stage 7.
And then.......
On July 22 she was diagnosed with Lymphoma of the brain.
I made the hardest decision I ever made in my long life...
I elected not to treat the cancer.
I "might have bought her 6 to 9 Months more.....Although for much of that time she would have been unaware of her surroundings.
We had both expressed a wish to not ever be a "vegetable'... and that is what the neurosurgeon warned me of, if they were to radiate.....
She Passed away quietly and pain free, at Hospice House on August 17.
Even knowing that it was inevitable, with Stage 6 behind her, I loved her very much and it tore my heart out.
It has taken till now before I could write about it....and even at that I am tearing up as I write.
She was the kindest, gentlest, nicest person I ever met in my life.
We were lovers, spouses and best friends for 42 years.
It really was no "burden" to care for her.
It was a duty and an honor.
I feel so sorry for you whose loved one has had a distinct personality change. My wife was still the same person when she died as when I met her.
She just couldn't remember when I met her and she could no longer do things that we take for granted like talking on the phone.......But she was still my girl.
I will always miss her and I will always love her.
I may learn to live with it, but I will never "get over it".
We were so lucky to have lived such a great love story.
I leave you folks with my hope that it will work out as good as it possibly can..
And I join you in prayer that someday, soon......they will find a cure/preventative for this hateful disease.
God bless you.
That is the most beautiful love story I have ever heard. What a blessing to have had such a succesful marriage like that. You are probably among the top 1% of the population. It reminds me of that song "I Was Walking Her Home". You girl's mind is working perfectly now with Jesus and you will be together again so soon. Life goes by so quickly and then, there is eternity. Be of good courage; you have a gift from God to help others and still time to use it.
Beverly Riley

Washington, DC

#72 Dec 1, 2010
I will like to here from someone who love one has early onset of Dementia. My brother was diagnosed
at age 55 and he is now 59. He is in stage six. He is now showing aggressive behavior. When trying to change his adult diaper he starts balling up his fist and acting like he wants to hit. I walk away and ask he 15 minutes later about changing him since he had a bowel movement. He rush toward me with his fist ball and stood in my face. I asked him what was he doing? Did he want to hit me and he said yes. I told him that he was scaring me and he said I should be. I lock my self in my bedroom that night and waited to the next morning when my sister came for her to change him. I am looking for a place to put he him because of the this aggressive behavior which is beginning to happen to me and my sister. He has not hit us yet. Has anyone experience this type of aggressive behavior and when does it goes from treat to phyical action?
RoseAnne

Lexington, MA

#73 Dec 2, 2010
Please have a psyche evaluation on him. I know it's difficult, but it needs to be done. My mother had awful, unspeakable dilusions and hallucinations. She was put on an anti psychotic, and got worse. I had many a heated discussion with her medical professionals and the only thing we agreed upon was that it wasn't fair for her to let her go on like that. So, we tried a different one, and what a difference. she calmed right down, and is doing wonderfully, this week. It's long and difficult, but does need to be treated. God Bless and good luck.
anne marie

Blackpool, UK

#74 Jan 12, 2011
our dad has dementia went into a care home last february . at first he started being violent because he was so frustrated on not knowing where he was . then the doctor put him on all sorts of anti sycotic drugs he didnt know where he was, He went from walking around to bed bound in 2-3 weeks his legs no longer work he didnt talk and didnt know who we was.He is curled up in the fetal position we demanded him took of all meds and in 2-3 weeks hes talking to us again not always recognises us but knows we are there.I cant believe the deteriation within the last 12 months alot has to be said for them drugs,he is prone to infections only eats pureed food had bed sores ,It is such a cruel disease for him and us his family,We dont know how long he as got left but we love him and pray he isnt in any pain xxxxxxx god bless dad xxxxxxxxx
Alice

Stewartstown, PA

#75 Jan 13, 2011
Does anyone have any guidelines about how long people live after showing symptoms with dementia? Everything I read contradicts itself and I don't know how you can plan long term care expenses without some general idea. My mother in law is 84, has had symptoms of dementia for about 5 years but is so physically healthy, not one thing wrong with her, and her mother was like this and lived to be 98 (last few years in a wheel chair in diapers, not much of a life at all). So far we are keeping her in her house with an aide and housekeeper but the expenses are now about the same as we would have with a modest assisted living (considering house expenses). It would help a lot to know how many years we can expect to keep her home and how many in a facility.
Ken

Aiken, SC

#76 Jan 23, 2011
Reading some of these posts, I don't feel so alone knowing others are experiencing the same problems and emotions as I in dealing with dementia. My father entered an assisted living facility 7 months ago. Has multiple small health problems but got what doctors just labeled "vertigo" from time to time. No exact diagnoses of dementia, yet. Could not leave him living alone and had no room in our modest house. With the dizziness came great confusion and signs of dementia. Has done better in facility, regular meals, monitored medications, dizziness went away. Memory still not great and small early signs of dementia still there but peace of mind for our family, him not living alone. Until just recently. All symptoms came back with a vengence. He is really in another world. Pulls memories from way in the past like they just happened. But does not know what time it is or what day it is. Does anyone have experience with this type of thing lasting a bit then going away again for a time? Do these "spells" stay longer as this progresses?
RoseAnne

Lexington, MA

#77 Jan 24, 2011
Hi Ken,
Have your Dad checked for a urinary tract infection. It is quite common in the elderly, male or female. I'm not sure, but I do believe it's part of the shutting down process of dementia, incontinence. Whenever my mother's sugar went out of whack, or she acted more crazy than usual, that's what it was. A few days on antibiotics, and she got better, but we did lose a little more of her each time. I'm so sorry I can't tell you they come back as good as new. But there are still many happy memories that have been created in the 5 years my mother has been afflicted. God Bless and stay strong.
Lisa

Lutz, FL

#78 Jan 24, 2011
I recently went to an annual conference for caregiving in Melbourne, FL to get more educated on what to do with my mom who was diagnosed with dementia. I was pleasantly surprised on all that is available. A book I would like to recommend is "The Caregiver's Path to Compassionate Decision Making" by Vicki Kind. I think that what was stressed at the conference was 1. to get educated on the disease and resources available in your community 2. Make compassionate decisions based on what your loved one would want not what we all selfishly want 3. Take care of yourself first emotionally, physically, spiritually. 4. Ask for help from others because you will experience burnout if you try to go it alone. 5. Have a plan A, B, and C. Hope this helps. I will post a website soon if anyone would like the notes from the conference. Believing God Still Blesses and Heals.
Sandra

Dartmouth, Canada

#79 Jan 25, 2011
My mother lived with my husband and I for 2 years, after her sister died suddenly.It became apparent that we couldn't provide the care she needed and after those 2 years, she went into a nursing home. This was something that she wanted when she moved in with us but I told her she was fine here. She has been in the nursing home for a year now,and up until 2 months ago, she could still dress herself and set her hair. Just before Christmas, her meds were changed and she became agitated easily and we noticed tremors head to toe. We were told, by a psychiatrist, that she was in the moderate to severe dementia stages. I argued my case to him, pointing out how she was only 2 months prior to the change in her meds. I was told I was in denial and what I had witnessed was progression. I feel helpless and all I want is whats best for her. I feel it's unfair for her to have to live like this. My mother is 78 years old.
RoseAnne

Lexington, MA

#80 Jan 26, 2011
Ahh yes, The experts. I love that they go in and see her for 15 mins a week and can tell us, we who go see them every day, think they can tell us they know better. Keep fighting. You have the right to approve or dissapprove any anti-psychotic drugs they want to give her. My sweet, sociable mother changed into a monster when they put her on one anti-psychotic. She even got put into the psyche ward at her facility, because of aggression and anger issues. It took me 2 weeks to get the so called experts to change her meds. They even tried to scare me and say if she wasn't "manageable" she'd have to leave the facility. But alas, I was right. They put her on a different one, and she was back to herself. Yes, she is in advanced stage of dementia, I accept that. But there are meds that help and those that make matters worse. Make them try a different one. God Bless

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