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How Long Does This Normally Continue?
NoSiblings
Posted: Friday, July 5, 2019 1:11 PM
Joined: 9/3/2016
Posts: 214


My mom is 88 years old and has severe AD. She can no longer walk at all, can not carry on any sort of conversation but can speak and respond limitedly, is doubly incontinent, can swallow but must be fed, and needs a Brody chair in order to sit up out of bed. She goes through long periods of being seemingly alert and while she may not know just where she is she is aware of things going on around her, and she always knows me. But then she will have a period where it's almost like she is in a stupor, she doesn't seem to be aware of anything around her, but you can by touching her get a little bit of a reaction. This sometimes lasts for a day or can last for several days. I am assuming this is typical. I expect that at some point she will slip into one of these stupor like states but just won't come back out of it. Is that what's to be expected? Any ideas about how long the back and forth from one state to another typically continues before the aware periods disappear forever?
Army_Vet60
Posted: Friday, July 5, 2019 1:26 PM
Joined: 6/21/2019
Posts: 367


Severe ALZ is considered Stage 7.

If she has a neurologist, that is who can help you the most. How long your mother will last could depend on what kind of attention/treatment she's receiving.

My understanding is that when  the ALZ sufferer stops eating and drinking completely, the end is near. The person's body is shutting down and the person just cannot consume anything anymore. The kidneys will shut down and the sufferer will eventually go into a coma.

 There are websites with the 7 Stages on ALZ, but I'd advise you to talk to her neurologist.

Is your mother receiving Hospice care? If not, Medicare covers at home Hospice 100%.

You can help your mother and YOURSELF go through the final stage in a lot more comfort with Hospice assistance.

 


NoSiblings
Posted: Friday, July 5, 2019 3:32 PM
Joined: 9/3/2016
Posts: 214


Thank you ArmyVet. Actually, while I was caring for both my mom and my dad in my home since 2012, my dad passed away this past November and a year ago in March we had to place my mom in a nursing home as I just couldn't do it on my own anymore. She is getting good care here, and I know it was the right decision but it was the hardest one I have ever had to make. Still I know I did the right thing. So I have not called in hospice for my mom even though I did have them with my dad. I'm not sure how helpful they would be with my mom as she's getting excellent 24/7 care, and she can't respond enough to appreciate the visits from the chaplain, social worker, etc. There is a lady who visits her once a week and reads the Bible to her, and I visit her daily. In fact, I just came from there now. I played gospel music for her on my phone, and I think she enjoyed that. It's hard to tell.

I did find out this afternoon that they have now switched her to pureed food. She's been having to be fed rather than being able to feed herself for several months now, but she's started chipmonking thus the switch to pureed. She can still swallow, and the aide who fed her lunch told me she did well with it today. 


Army_Vet60
Posted: Friday, July 5, 2019 6:19 PM
Joined: 6/21/2019
Posts: 367


The fact your mother is in a nursing home is good for both you and her.

I am very happy to hear you have this arrangement.

I'll leave it at that. She's in good hands, and you don't need to suffer any more than you have.


GemsWinner12
Posted: Friday, July 5, 2019 7:49 PM
Joined: 7/17/2017
Posts: 357


Hi, no siblings.  When my mom was in the stage as you describe ( just pureed food, not chewing well), she lived for about six months longer.  She just gradually ate less and less, and then her swallowing reflex just went away one week, and then I told hospice to go forward with the morphine.  She also was less and less aware; less there as the weeks and months went by.  Some days were better than others, yet overall she declined measurably with each passing month.  She was obviously in pain when she had to be turned or changed.  She lived for another ten days on only mouth swabs and oral morphine drops.  Hospice can be helpful for this last stage, since many regular aides and nurses are afraid and fearful that your loved one will pass away on their shift.  Only a registered nurse through assisted living or hospice can administer the morphine at this last stage, which is why you might want to get lined up with a hospice company; they also help coordinate which funeral home you have chosen.  As others have mentioned, Medicare and Medicaid pay for hospice services from most companies. Your Mom's facility probably is already aligned with a few Hospice companies and can give you recommendations if you want to go forward.
NoSiblings
Posted: Saturday, July 6, 2019 9:24 AM
Joined: 9/3/2016
Posts: 214


Thank you both! For my mom's sake, I hope she will not continue to linger so if this does progress quickly it would be a blessing for her. She no longer has any quality of life whatsoever. There are a few hospice agencies that work with the nursing home where my mom is, and the one I used with my dad also goes there. I was pleased with them. In fact, when I was there yesterday as I was leaving I ran into his hospice nurse who was coming to visit a patient or patients that she has at the nursing home now. As all of you have experienced, this has been a long hard journey. When it first began, I really had no idea what to expect. I look back now and marvel at how naive I was. I did not realize how hard it was all going to be or how awful this disease is. I had always thought of it in terms of "well, people lose their memory and stop recognizing family." I thought that was sad. Little did I know that aspect is the least debilitating thing that happens. Still even if I had known, there is nothing that I could have or would have done differently. Now I think I can't believe that I am hoping my mom's life will end before too much longer. When this journey first began, I could ever have imagined that. But I do hope that, and not because I don't love my mom but because I do love her so much just as I'm sure all of you love your person suffering from this disease. No one should have to go through this. My faith tells me that when she leaves this shell of a body behind she'll be celebrating in Heaven with my father once again. That's what I want for her.
King Boo
Posted: Saturday, July 6, 2019 10:07 AM
Joined: 1/9/2012
Posts: 3027


We had good 24/7 care in a nursing home too.  Hospice adds another layer of service which is beneficial.  Extra volunteers (for those good days when I wasn't around) to go for a wheelchair stroll, or play music.  Bath aides; social worker and hospice RN, who had a sharp eye for the physical changes that herald the final weeks and days are near (regular staff don't have the ability sometimes to spot this as quickly).  Tremendous validation and support for me about my decision making and adjusting to what was to come in the dying process.  Peace of mind that under hospice care, a well versed palliative/hospice physician was writing the approrpiate medications in the correct dosages, and a quick call was the only thing needed to move to inpatient hospice when symptoms needed it.

Sleeping around the clock most days were the most clear signal, along with decreased ability and interest in food and drink those few spells when awake.


NoSiblings
Posted: Saturday, July 6, 2019 2:11 PM
Joined: 9/3/2016
Posts: 214


Thanks! I will give some serious consideration into adding in hospice for my mom.
terei
Posted: Saturday, July 6, 2019 2:47 PM
Joined: 5/16/2017
Posts: 400


I think you should be doing some hard thinking about whether or not your mother would wish to be kept alive in this condition.

My mother was very clear to me that when she could not feed herself, she did not want to be hand fed by others.   At the point that she quit feeding herself, (+ was sleeping through most meals anyway), we did not allow the MC to feed her by hand. Hospice was supportive of the decision.

She died about 9 days later, most of that time she was not opening her eyes except on rare occasions. We played music, talked to her + she was bathed + repositioned every few hours.

I consider hand feeding the current equivalent of tube feeding and should go the way of that, meaning. we should stop torturing people who are demonstrably uninteresting in eating....why are we extending the zero quality of life of someone by shoveling puréed food into them, when the end result will be death?  This to me is horrific.    Consider whether you, yourself, would want to be artificially kept alive under the same circumstance.     

It is humiliating + an insult to a person’s dignity to be treated like this.    

HOspice can give you medically accurate information about the fact that going without food at this stage is not painful + actually sometimes enervating mentally because of euphoric effects on the brain.  

 Please consider stopping the hand feeding, especially if you KNOW that your LO would be horrified by the condition they are in + would not want to live in it. This is the hard decision that too few people are willing to make, even though it is the merciful one.


NoSiblings
Posted: Saturday, July 6, 2019 4:47 PM
Joined: 9/3/2016
Posts: 214


teri, I am going to assume that you mean well and that you are suffering and mourning the loss of your loved one, but to be honest your post comes across a little belligerent to me. But in response, no I am not trying to prolong my mom's life. My mom when she was still able to completed very specific Advance Directives detailing what she did and did not want. She did not want any artificial feeding tubes, etc. and I will make sure she does not have that. However, the aides tell me that with the pureed food my mom ate almost all her lunch yesterday where previously she was eating almost nothing. That she ate it that way tells me she was hungry. While my mom can't respond a lot she can most definitely let you know when she does not want something, and I can assure you that absolutely nothing will be done that she indicates she does not want. To be honest, the sooner God chooses to take my mom out of this misery the better I believe it will be for her. So I resent your implication that I am somehow trying to prolong this agony for her. I am checking into hospices for her, and I will also follow their guide. I may not know a lot, but I have done a lot of research. Please remember how you felt when you were in this situation, and how hurtful it would be to have someone imply that you are not doing everything you possibly can in your loved one's best interest. I have been walking this road with my mom for 7 years now. She's been in the nursing home for the past year, but I have still been there everyday for her and prior to the nursing home I cared for her in my own home. I am doing the absolute best that I can, and I love my mom with all my heart.
terei
Posted: Sunday, July 7, 2019 4:29 PM
Joined: 5/16/2017
Posts: 400


You need to do what you think is right.  I just happen not to agree with you.  Every calorie you are giving her is extending her lifetime at zero quality of life.

I have observed people being hand fed.  Most are reflexively opening their mouth when the aid touches it with a spoon or cajoles them into opening it ‘come on, Mary, just one more bite, come on’ etc etc.  It does not mean they are ‘hungry’.

There are exceptions, of course, + if she is asking for food or eating it with her own hands of course you cannot withhold food.

I’m sorry if you felt I was belligerent... I am being brutally honest about a subject that I have researched + experienced + have come to believe that hand feeding puréed food to dementia patients who are end stage is wrong.  I have signed a dementia directive that clearly states I do not want hand feeding + I urge others to be proactive about their own future + make sure their wishes are clearly understood.

Again, you must do what you think is right.


YS
Posted: Sunday, July 7, 2019 4:41 PM
Joined: 12/10/2011
Posts: 428


I have been torturing, sorry, hand feeding my DH for a couple of years now. As long as he eats, I will continue to hand feed him. I don't see it as humiliation at all.

 I have been cleaning my husband for at least 6 years now. Should I consider this humiliating to him and should I have let him die in filth as a result?


terei
Posted: Sunday, July 7, 2019 8:35 PM
Joined: 5/16/2017
Posts: 400


You need to do what you think is right.  I just happen not to agree with you.  Every calorie you are giving her is extending her lifetime at zero quality of life.

I have observed people being hand fed.  Most are reflexively opening their mouth when the aid touches it with a spoon or cajoles them into opening it ‘come on, Mary, just one more bite, come on’ etc etc.  It does not mean they are ‘hungry’.

There are exceptions, of course, + if she is asking for food or eating it with her own hands of course you cannot withhold food.

I’m sorry if you felt I was belligerent... I am being brutally honest about a subject that I have researched + experienced + have come to believe that hand feeding puréed food to dementia patients who are end stage is wrong.  I have signed a dementia directive that clearly states I do not want hand feeding + I urge others to be proactive about their own future + make sure their wishes are clearly understood.

Again, you must do what you think is right.


zauberflote
Posted: Sunday, July 7, 2019 9:40 PM
Joined: 10/24/2018
Posts: 366


Terei, you are well educated on your topic, I believe. You have made your own wishes clear to your future carers. OP asked a whole different question from the one you have answered more than once. Your answer is to the question, "tell me what you think of hand feeding?". OP asked a question about timing. Perhaps your answers to OP are a roundabout way of saying, "the stages can be prolonged by the administration of nutrition. ". If so, it would be more supportive to say simply that, rather than add to it a strong opinion as to how others ought to treat their LOs. Often, sad, bewildered people respond well to supportive expressions, even online.
NoSiblings
Posted: Monday, July 8, 2019 8:14 AM
Joined: 9/3/2016
Posts: 214


Yes, thank you. My question was about length of time to expect before she just becomes completely unaware, etc. I know every case is different, but just wondered what others had experienced. As for the feeding, I continue to give teri the benefit of the doubt. Having lost my father a few months ago, I know she must be grieving. But what is the best choice for one person may not be the best choice for all. I know my mom better than anyone. I know that I am doing what my mom would want, and I am comfortable in that choice. That doesn't mean, however, it is not hurtful to be told stridently that I am making the wrong choice. Evidently another poster felt the same way with her husband. We each do the best we can in the situation we are in. No one walks the exact same path. I am checking into hospices, and I will continue as I am -- loving my mother fiercely and doing everything I possibly can in her best interest while making decisions I know in my heart are the choices she would want always considering her advanced directives.
Army_Vet60
Posted: Monday, July 8, 2019 8:35 AM
Joined: 6/21/2019
Posts: 367


No Siblings,

It's hard to say how long this normally lasts because I believe some people can pass through the first stages with the disease being undetected.

My wife was first diagnosed with memory impairment in late 2012. This was after two major surgeries and was 70 yrs old.  The doctor said that was an expected side effect for someone her age.

A year later, she told me she was having trouble remembering things, and a doctor diagnosed her as having early stage dementia.

In 2014, she was formally diagnosed with mid stage Alzheimer's.

It only took 6 years for her to be referred to Hospice.

Her illness has been very aggressive; her neurologist originally thought it might last 8-9 years.

 

 


NoSiblings
Posted: Monday, July 8, 2019 9:49 AM
Joined: 9/3/2016
Posts: 214


Thank you. My mom's AD has progressed pretty quickly from what I have read. I suspect she was at least entering Stage 5 before she was diagnosed. It took a long time for us to recognize because my mom is also blind and hard of hearing, and we blamed a lot of things on that especially on her blindness. My dad was very sick, and we were very focused on him. I blamed myself for not recognizing what was going on with my mom sooner, but I've now let myself off the hook for that. Knowing sooner wouldn't have changed a single thing other than add to the stress for both of us.

I was really wondering about the fact that some days it's as if she's in a stupor now, and other days she is more aware of her surroundings. I expect that there will come a time when the awareness will disappear if not completely to where the stupor days are more prevalent. I was wondering how long that usually lasted. I'm certain she's Stage 7, and I am going to call in hospice for an evaluation. I'll be very surprised if she is rejected. Other than the AD my mom is actually pretty healthy for an 88 year old. She has no co-morbidities such as heart disease, COPD, etc. 


Army_Vet60
Posted: Monday, July 8, 2019 10:04 AM
Joined: 6/21/2019
Posts: 367


This past month, my DW finally hit double incontinence which are the last two steps of stage 6. She's already showing signs of Stage 7 - She uses a wheelchair, speaks in word salad past 4 or 5 words, barely eating enough to survive.
 
Given that, my DW is just like your mother in that she spends half the week in a stupor and I think "this is the end", and then she spends the rest of the week having sudden bursts of energy that last several hours where she tries to walk unassisted, talks "word salad" for about an hour non-stop, reaches for food and water and eats as much as she can....
 
I think your mother and my wife are approaching the end, but a survival instinct in both of them hasn't completely given up yet.
 
I don't think Hospice will reject your mother.
 
 NoSiblings wrote:

I was really wondering about the fact that some days it's as if she's in a stupor now, and other days she is more aware of her surroundings. I expect that there will come a time when the awareness will disappear if not completely to where the stupor days are more prevalent. I was wondering how long that usually lasted. I'm certain she's Stage 7, and I am going to call in hospice for an evaluation.



zauberflote
Posted: Monday, July 8, 2019 10:30 AM
Joined: 10/24/2018
Posts: 366


NoSibs, I'm happy for you that you've called hospice. 2+ weeks ago I initiated the hospice proceedings for Mom, who was an still is doubly Continent, had&has much language loss and confusion, anxiety, andhad&has "going someplace ideation" (I made that phrase up). Family desire was that Mom would never have to go to ER or be admitted to hospital ever again. Two years ago an ER visit gone wrong nearly killed bro and me. 

DON of facility told me hospice was the best and only way to go for that, and I had no disagreement. The Very Day Mom's case manager RN was Already Driving to meet Mom for the first time, Mom fell, whacked her head, and everything changed. Yesterday afternoon an on-call hospice RN, who hadn't seen Mom but had detailed notes from a previous call I'd made, said that based ONLY on the details she had, she might say that Mom might be getting ready for "a transition" fairly soon. She meant becoming less responsive and going into "preparing for her journey". The case mgr RN will see Mom today, and we will see what she says. 

So for us, the decline has been possibly exacerbated by the fall, and if Mom continues to sleep more (in her bed!!! Highly unlike her) we could be looking at weeks or less possibly. A lady in the next room to Mom was pretty much asleep all the time except hand-fed mealtimes, and then some period when she couldn't even get out of bed, then some period when maybe she couldn't be roused, the whole lasting 9 months. I don't know how long she'd been sleeping before we came. 

When hospice (on which she'd been for 16 month) told us MIL was in the last downhill slide, it was less than two months to her death. The totally comatose period was only a few days as I recall, and active dying was about a day and a half. Hospice was with us every step of the way. 

Hope some of this helps even a tiny bit!


NoSiblings
Posted: Monday, July 8, 2019 11:00 AM
Joined: 9/3/2016
Posts: 214


Thank you so much! That is helpful. Prayers for you, your family, and your mom as you go through this last stage. With my dad my prayer was that he would leave us peacefully without pain. Hospice of course kept him out of pain, and blessedly he just closed his eyes and left us. His mind was sharp, and I was able to have some wonderful conversations with him before he left us behind. He worried so much about my mom, and I'm grateful he is not having to go through this with her anymore.
NoSiblings
Posted: Tuesday, July 9, 2019 3:43 PM
Joined: 9/3/2016
Posts: 214


Just as an update, I met with one of the nurse practitioner's today at the nursing home. She agrees with me that my mom is definitely Stage 7 (in fact probably pretty much into Stage 7), and that it is a good idea to go ahead and call in hospice. She and one of the social workers is getting that set up for me to meet with hospice hopefully tomorrow.

 


Army_Vet60
Posted: Tuesday, July 9, 2019 4:13 PM
Joined: 6/21/2019
Posts: 367


Best wishes to you and your mother.

After you meet with Hospice tomorrow, you'll be surprised how quickly they act to set your mother up with care and any supplies needed for her - bed, oxygen, skin cream, diapers, toilet, and more.

Hospice also provides volunteers to sit with your mother if you need to go out for a hour or two.


zauberflote
Posted: Tuesday, July 9, 2019 4:22 PM
Joined: 10/24/2018
Posts: 366


NoSibs, again I'm glad for hospice for you. Just as a note, if you'd rather had a hospice group whom you've chosen yourself, that is perfectly doable. If you're happy with NH calling theirs in, that's the way to go!

The best part for me so far with hospice has been that RN on the other end of the late-night and weekend on-call phone line. I have made two friends, and one of them has already "talked me down" from my own high anxiety. I'm sure you'll get "good people"!


NoSiblings
Posted: Tuesday, July 9, 2019 6:43 PM
Joined: 9/3/2016
Posts: 214


Thank you both. They did give me a choice of hospices, and I decided to go with the one I used with my dad. Thank you all for your input. Sometimes it just helps to know someone is "listening".
Daughter in Florida
Posted: Tuesday, July 9, 2019 10:16 PM
Joined: 4/15/2018
Posts: 74


Dear No Siblings,

I've read the replies you've received, and I agree wholeheartedly with the advice to involve Hospice, which I see you have done. 

I lost my mother in February after 7 long years of dementia. The last three months were spent in a nursing home. The last 6-7 weeks were under hospice care. About three weeks before she passed, she was placed on pureed foods, which she ate fairly heartily for about a week. Gradually she lost her appetite and I noticed meals weren't being finished. (Please ask the staff to be very honest with you about her food consumption. I feel some of the aides just wanted to make me happy by telling me she finished all her meals...in reality I don't believe she was, and that information would have helped me prepare better). And to be fair, maybe she was consuming whole meals at times, but when I was with her, she wasn't.

About two weeks before her death, mom pretty much stopped communicating. While it had been very intermittent the last three months, those last two weeks were very quiet for her. Lots of sleeping, and I noticed they began letting her stay in her bed, which they had not done up to that point. She was always agitated and a huge fall risk, so they would get her up every day and put her in a wheelchair. Finally when Hospice began caring for her, they got her a Brody chair which she could recline and sleep in while in the common areas. 

Hospice added that extra layer of care that I felt helped get us through those last weeks. And when it was obvious that she only had hours/days to live, they were there 24/7 until the end. They ensured there was no suffering, and she was treated with much dignity and respect. 

Based on your description, I believe your mom is very close to the end. Hospice will help this process. It also sounds like when your mom passes, she will share the streets of Glory with my mom! Praise God!


trebizond
Posted: Wednesday, July 10, 2019 5:09 AM
Joined: 4/10/2018
Posts: 61


Dementia prognosis is notoriously difficult to predict. Our understanding of the disease process is not as good as it is in end of life cancer, heart disease, lung disease, etc.

Won't address the hand feeding questions raised here; it is very difficult decision making that my family is going through now, but generally we're going with the hand feeding and are not going to pursue things like feeding tubes and IVs. Others may feel differently, and with good reason.

There is a prognostication calculator that can give you a 6 month survival estimate that is somewhat appropriate for the dementia diagnosis. You may find it helpful.

https://eprognosis.ucsf.edu/mitchell.php 


NoSiblings
Posted: Wednesday, July 10, 2019 8:13 AM
Joined: 9/3/2016
Posts: 214


Again thank you all. You've been so helpful.

Daughter in Florida, your mom's situation sounds very much like my mom's experience thus far, and I so relate to what you said about staff not telling you everything. That's another reason I want hospice. Even though I've told the staff please tell me how things really are I don't believe they do. I think they believe they are being kind to me but not telling me the brutal truth, but in fact I need the brutal truth to be able to prepare. Sugar coating things doesn't help in the long run. With hospice I know I will get regular reports that don't try to "make me feel better." There really is no feeling better. This is an ugly, horrid disease, and there's just no getting around that fact.


 
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