Hello all. I haven't posted much but I think for the next few months I might be posting more often
I just came from my mom's care plan meeting yesterday and my 77 yr old mom now has moderate dyspagia and needs puried/nectar foods which developed only over the last couple of weeks. Can still feed herself. She is easily tired, esp after PT/OT therapies and for the last few visits has been very lathagic - sleeping 10-12 hours a day. She has lot a bit of weight. Carries her head tilted back with chin up. Cooperative. Lost ability to walk 6 months ago. totally incontinent with no awareness for about 5 months. Gives 1-2 words responses with an occassional sentence. never initiates communication. Need to make physical contact or get close to her face to get her attention.
During her 30 minute care plan meeting she sat in her wheelchair looking at the ceiling (her head position) and showed no awareness of anything unless someone made physical contact to make her focus. She was soon after taken to bed - 2pm. I spoke with both shift nurses and she is tired and hard to wake in the morning, most attentive in the afternoon and is asleep by 8pm. the theapists have a hard time finding a good time to do their work becuase of her lethargy for the 2 weeks she has been in the facility.
She had been an assisted living facility for dementia for the last 7 months but because she needs max assists for all physical duties (roll in bed, lay to upright position and transfering) the facility might not take her back . She is currently in rehab after a hospitalization for kidney infection. They will release her from rehab on Jan 22 for failure to make progress on OT/PT and speech. Will move her to nursing home (hope for the one she is currently getting rehab in).
Are we in stage 7? How long do you think this will last?
The decline is striking and swift. Brief history
~early 2000s - has trouble remembering names/dates. Needs people to finish thoughts. Likes having 1 sided conversations. Whether this was the disease or personality is anyone's guess
2005 - living alone but doens't manage diabeties (denies diagnosis). has a fall that left her stranded for 3 days before housekeeper found her. 6 wk hospitalization before 2 month rehab. Refused to go to assisted living as recommended by her doctor of 20 years.
2007 - drives car into a 7-11 (up the front curb) with no recollection of how she got there or where she was. Bills unpaid, medications forgotten.
2008 - bowel incontinence begins - waives it off as 'stomach upset' until it becomes a 2-3x weekly occurance.
April 2009 - needs daily bathroom help and meal prep.
May 2009 - hospitalization for hydrocephaslus after a fall in her home. 4 wk hopsital followed by 4 wk rehab. Lost ability to walk and can't remember her phone number or address where she has lived for the past 20 years but still insists she can live on her own.
July 2009 - Sweet talked her into "rehab" at memory care center (aka assisted living for dementia). Still has conversations but no awareness of time/place. Psych called in for pyschosis - acting out, delusions, cussing, hitting staff, etc. Stage 6 is confirmed.
Oct 2009 - very soft spoken. rarely initiates conversation - use of stock phrases showing no comprehension of topic ['what do you think about that?; 'does that happen often?", etc]. She's been a master at covering her disfunction.
Dec 2009 - Hospitalization for kidney infection. She is a shell of herself - very lethargic, little to no communication. But had a day where she was her old self - talking to the TV, reminising about childhood, then reverted back to a quiet, haggard old lady.
Now in rehab.
Family has already made decisions regarding end of life issues (hospice care, DNR and no feeding tubes), but we aren't quite there yet. Yet we know it is coming - the question is - how soon?
It's a sad, long, and familiar story. My Mom followed much the same path. The main difference is that Mom fell, broke her hip, and remained in a wheelchair for the remaining 2.5 years of her life. She had to live in a NH after rehabilitation failed to help her. Pureed foods, thickened liquids, total incontinence, not able to speak very much but some, not much recognition of who was with her, but unfailingly pleasant to all, saying thank you to the nurses, aides, and family members. The 7 stages are flexible and depends pretty much on who you are asking, but I think the end is near for your Mom ... by the time Mom was that bad she lasted maybe 6 months longer. She lost a lot of weight when her body stopped processing even the liquid foods. But she never seemed to be in pain or unhappy. Hospice nurses came into the Nh to care for her in the final weeks, and they were a godsend.
yutena I've wondered some to, as to when we might loose my MIL. It's sure a mixed feeling, isn't it. At times when we're tired and she is really having a bad day or when she's doing something really cute we wonder what our lives are going to be without her. Having the shell of her is so sad. I just pray it happens when it's best for her/them and she/they go peacefully in her/their sleep.
Yes, thinking about losing them is a mixed bag of feelings. On new year's eve we had a wonderful night with our mom. She danced with my brother to old tunes. She reminisced with him about how she and my dad would dance. It was a sweet night. We left her at her place and came home and thought this would be the perfect movie ending if she could peacefully go to sleep after a wonderful night. Sounds pretty, doesn't it...if this was a movie.
A few nights later her aide called to tell us she wasn't answering her phone and that she was going to get security to let her in. It was 45 minutes before we heard anything more and that she was okay. In that 45 minutes I prayed for mom's peaceful passing yet hoped with all my heart that she was okay.
Yutena, my mom isn't as far as your mom yet. So I don't know what to say as to how much longer she can survive. Others are better equipped than I. But please accept our welcome to share with us and know our prayers are with you and your family.
Yutena... that is the million dollar question. There is no way of knowing. It depends on so many variables. I did noticed that each episode of deterioration seemed to coincide with a medical crisis or other major upset in her normal routine which is absolutely normal. So anything could accelerate the process... or she could be a fighter that stays where she is for a while.
Just know we have all been where you are or we are headed in that direction. I myself am headed in that direction with Dad. He has lost 30 pounds though he still eats well so i know he is not processing what he eats. I have noticed that he eats a lot slower then he did before. I did notice a little trouble swallowing when I was there Thursday. He still tries to walk despite the fact that he has had several falls lately and his legs don't want to hold him up. He's a determined sort. We were told 32 years ago that his heart condition would be terminal within hours. NOT!! Since then he has survived two more heart attacks, 5 bypasses, several stents, gall bladder surgery, and now in his tenth year of dementia.... and he can still give me a run for my money! Meg, like you I pray that he goes peacefully in his sleep after a good day while hoping we have a few more good days. I don't know if Dad will be here in the morning or if he will be here 6 months from now. I have resigned to be thankful for every day we have with him and not worry about what tomorrow will bring.
I like you have the medical directives and DNR forms done. They are Dad's wishes and I am in total agreement with what he ask. That is a weight off my shoulders that this decision has already been made and I am sure it is yours as well.
Welcome back to the board and I do hope you stay around. It's a great group of wonderful people who truly understand.
I haven't been posting much, but I do want to chime in on this one.
When daddy got to where he was on puree', he didn't want to eat much. Less every day. Weight loss, inability to bear any weight on his feet (one of my horrible memories was when I was transferring him from his bed to the wheelchair, I lost my grip on him and he slid to his knees on the floor. I will never ever forget how horrified I was. I picked him up and got him in his chair, but man - I felt like dirt.), far-away gaze...and he only lasted a couple of weeks after that point.
I think there is a lot to be said about how the patient feels about this stage. I believe there is some cognition left, and daddy flat gave up. I work in a locked Alzheimer's facility now, and I've seen it happen time after time. If the patient is "done", tired, ready...then the end is pretty snappy fast. If they still have fight in them, then it could be a while yet.
At any rate, I would bet that the end will come sooner rather than later. No one knows the day or the hour - that is God's work.
So every minute you can spend in joy with her, do so. Take a million mental pictures (does anyone else do this, or is it my own weirdness?), a zillion photographs, hold hands, laugh and sing. Enjoy the winter of her life, and rejoice that she will soon be free of this awful disease.
And while you're at it, send up a prayer that a cure is found, and no one will ever have to go through what your mother and you are going through. It's so very hard, so very cruel, so very draining for all of you.
From my experience, your are well into stage 7. When my wife went into these symptoms, she lasted only a couple of weeks. But, who knows. Every person is different. The only sure thing about dementia is that you're never sure what's going to happen. Sorry for what you are facing. K
If the patient is "done", tired, ready...then the end is pretty snappy fast. If they still have fight in them, then it could be a while yet.
I agree with that Deb....or at least thats how it went with my grandma.....she lingered on for so long, but in the last few weeks, you knew she was "done fighting". The last episode she was admitted into hospital....right before my son was born....my two uncles, my mom and one aunt stayed with her. One of the last nights in the hospital before they sent her home, she pulled both my aunt and my mom down to her and kissed them both on my cheek. But my uncle, who was her caregiver, she pulled him down and gave him a huge kiss on the lips!!! My mom said it was such a powerful kiss, so much so that my uncle said "Oh dear mom, you have me all embarrassed". It took all her strength. She was released home a day or two later, and died 3 days later in her home. At that point, we knew she was saying "goodbye" with those kisses, she was done. And the one she gave my uncle was so strong, all she had left to give him, for what he gave to her. Ah....so sad....and I am so glad its over......
That's one of the terrible things about this disease, only one of course. You never know anything for sure. Had I known that Mom's last few months here, were her LAST FEW MONTHS HERE, I could have brought her home with me. Instead of the Assisted Living and hospital. When I couldn't get an answer at her apartment in the mornings I would pray that God had taken her in her sleep, without fear or confusion. Then feel just like a horrible, horrible daughter for even thinking such a thing. It was not to be. Mom died here with us and it took 3 very long, dreadful days. How I truly hate this disease.
What I mean is you can do ANYTHING for a few months. Even though your exhausted from the years of caring for them, just to know when the end is near would be so much better. I did kidnap Mom from rehab and bring her here. But it didn't last, only 5 days. Just 5 short days. I didn't know it would be that soon. I thought we had more time. We were lucky to have her with us to say goodbye and care for her. She was surrounded by love and family. But its never really enough time is it? I thought I was ready.....I wasn't. I was just exhausted.....not ready at all.
Mom couldn't swallow without choking, just drops of water. Stage 7 is so very hard, the end of any loved ones life is hard I know. God bless all caregivers.
Thanks for all your responses. The lack of concrete answers doesn't work well with my personality
I will visiting her at the rehab tomorrow and corner someone to talk about hospice. I have come to terms that she has progressed enough in the disease to let it run its course. A month ago I woud have never dreamed I would be taking about hospice NOW instead of years from now...
I am going to look at a nursing home that is only five minutes from my house. In earlier times I would not have considered this place. It is dark and instutional in structure, but my mom is beyond caring about asthetics and the facility gives good care which is what is most important. Plus, I will be much closer than the 40 minutes I am to her assisted living place.
[She cannot come home with me. I have a special needs (austism) four year old and an active seven year old. No room for her and most importantly, my personality is not cut out for caregiving. Plus she has insurance to pay for long term care facility]
I dread moving her again... I dread dealing with the insurance company about the changes... Packing up her meager possession...Most of all I dread the inevitable decline that a move might aggravate.
Hopefully I'll have more direction, if not answers, tomorrow to fortify myself for the months (weeks) ahead.
A move in care establishment is probably never ideal at such a late stage, but we made such a move with my Mum (on Xmas Eve) as no EMI nursing beds were available at her previous home of 3 and a half years. So the move was compounded by skeleton-staffing levels because of the Xmas holiday, coupled with the (very grim) prognosis from the doctor who came to see her on Xmas day at this new home, we were in fear that she would die virtually alone, in a strange place to us (and her, relatively speaking of course) but she's still with us, and has gone from taking in virtually nothing in terms of liquid/pureed intake, to averaging half a litre per day.
So, in answer to your question re; the duration of stage 7, well according to the doctor who saw Mum on Xmas day, Mum's stage 7 should be over by now.
If a member of the medical profession calls it wrong, I'm not going to attempt to give you a black and white answer. Just take each and every single day as it comes and be thankful if it's a relatively good day.
The lack of concrete answers doesn't work well for anyone on this board. But as a friend reminds me daily, "It is what it is" and we do our best. Take each day as it comes and put one foot in front of the other.
Yutena...you won't get concrete answers...there is nothing concrete re ALZ! The only things concrete are the decisions that you make for the wellbeing of everyone in your family. You have young children...in my opinion they come first. I think that you are getting it right. I hope the move goes smoothly.
We had to place my mom in long term care in May of 2009. It was the hardest thing dad and I ever had to do. My mom had many medical problems along with the dementia. In may she fell at home and fx her hip. The rehab facility told us she had been a patient 6x since 2006 and that it was time to place her on the long term care floor for her safety. We were very lucky this facility had a wonderful reputation and was 2 seconds from our house by car. I usually walked over. I visited mom usually 2x a day. I know that is a lot. I would go in for like 10 mins before work then go back after work for about a half hour usually by night time she was tired so I didn't stay late.
About three weeks before mom passed away I was looking into bringing her home with Hospice. We had no idea she was going to pass away when she did. My mom had a habit of having things happen to her and she would always rebound and pull through. She had been on deaths door so many times. We have sat outside so many ICU rooms thinking this is it. Somehow she ALWAYS managed to pull through...... This time she got an infection and because she was so weak from being on dialysis she could not fight this one and passed away in October 2009. We thought for sure she was going to pull through but she fooled us all..... My mind knew what was happening at the time but my heart couldn't accept it. It was the hardest thing to do was to watch her die. I was not there when she left this earth.... not sure if I could of been there....I did so much for so long to keep her alive. I found it just to hard to help her die...
Spend as much time as you can with your mom because in the end that is what is important that she knows you were there for her and loved her.....
What Chris said is exactly right Yutena... it is what it is and we do the best we can. There are no concrete answers. There is not an expiration date stamped on your Mom's foot that will tell you when this will be over. Her journey may be over before morning or it might be years from now. It is her time and only she can decide when that is.
When someone has an illness we look for definitive answers about life. Give me a date, a time, how long. DO you ask that question of yourself? Do you know how long you will live? There is no way of knowing. As with your Mom it could be before morning or years and years from now. As my daughter reminded me recently... By living we are all in the process of dying. Out of the mouth of my baby... she set me straight. I am no longer watching them die... I am helping them live. When the time comes I will grieve for myself and miss them but not until