Hospice for Dementia?

[natalieluke]

My grandmother is in a Dementia ward at a assisted living facility. About 2 weeks ago they approved her for Hospice. Does anyone know what to expect form this? They say that they want to improve her quality of life.

I am so confused. Has anyone here gone through this?

Natalie

 

[Margarita]

Sorry can't be of help Hospice

But that does very Interesting are you in the UK?

Because the lady who is our area manger at mum ALzheimer's day centre said that they do not have Hospice for people with dementia as its not like cancer knowing how soon the ending is going to happen

 

[natalieluke]

I am actually in the US. Only about 10% of Dementia patients get approved for Hospice (over here) normally they dont.

I am actually new to the forum...Is everyone from the UK? I only ask because I am sure the laws are diff.

My grandmother has gotton worse, has declined very much within the last 6 months. She is confined to a wheel chair and only recognizes me sometimes for a few minutes. As you know it can be so confusing.

Natalie

 

[Brucie]

Hi Natalie

although Talking Point is UK-based, we do have quite a few folks from the USA on the board, as well as others from around the world. Dementia knows no boundaries, so carers talking to other carers should not either.

You are quite correct that there will be differences, legal, medical, social, national - but many other things are the same wherever you are.

The following thread may show how people are spread - most people don't join the poll itself, but the table shows where folks were from when I last looked! http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=1925

I too have not heard of hospice care for dementia people in the UK, as Margarita has said. Unless the person is in a very advanced state where a problem such as heart, lungs, etc are severely compromised, there is just no knowing how long a given person will be around.

 

[Lila13]

I think hospice means something different in American.

I hope you can ask your grandmother's doctors or nurses to tell you more about what it means in her case, Natalie.

Lila

 

[rummy]

Hi Natalie,
Yes, Hospice can be called in for Alzheimers in US. My Mom was in an assessment unit and the psychiatrist told us she is in the last stage and we could get help from hospice. We now have her in a locked unit in a nursing home and she is actually doing very well there and not as confused as she was at home. A hospice lady comes into the unit every couple of weeks to play her banjo and entertain the ladies for an afternoon. I talked with her and she told me that as they decline, hospice will assess them and can come in to do what they do. Help with nursing, medications, company, grief consuling , etc. If there is improvement they will discontinue but can be reassessed for their services as it warrants. This can happen many times with dimentia.
I was surprised and relieved to find out this is available. You just need to call your local hospice service and find out what they do and don't do. It may be different state to state, I'm not sure.
I hope I've helped. I'm also in US so pm me any time and I will help if I can.
Debbie

 

[Margarita]

Hope you don't mind natalieluke , I came across this site

http://www.usnews.com/usnews/health/briefs/seniorshealth/hb040903.htm

It seem that it does mean the Same .

I think hospice means something different in American

I do hope you do keep useing TP As it is good to read how American dementia services our different to our in UK, That link may have been of some help to you xx


PS forgot to say thank - you to Bruce for answering

 

[Margarita]

Rummy did not see your post

hospice will assess them and can come in to do what they do

I know that with people who have cancer they have a nurse that come in can't Remember there name .

the surport at your mum care home for the you and your family sound very postive . I wonder do they do that in uk for a love one with AD ?

I talked with her and she told me that as they decline, hospice will assess them and can come in to do what they do. Help with nursing, medications, company, grief consuling ,

PS found the Name Macmillan Nurses

 

[noelphobic]

My understanding is that hospice in the US and UK are different things. In the UK if we talk about hospice we usually mean it as a place that provides care for people with terminal illnesses. In the US I believe it is care that is provided wherever the patient already lives eg own home, nursing home etc.

Someone will correct me if I'm wrong, I'm sure!

 

[rummy]

In the US hospice will come to the home, the nursing home or the hospital. They often have hospice facilities or rooms at the hospital specifically set aside for their patients. They consider Alzheimers a terminal illness even though the patient usually will die of other complications. Because it is hard to predict the life expectancy of end stage Alzheimer's, they constantly will reassess the patient. If there is improvement they will discontinue the services, then if it worsens, they can be called back in. They are usually called in when there is a life expectancy of less than 6 months.
This is my basic understanding of it. My FIL has lung cancer and hospice is ready to go in with nursing care, medication and pain relief ( all at no charge ). It isn't any different with AD except it is harder to predict.
My Mom was really bad in the hospital and they said she could receive hospice. Now that she is getting 24/7 care in the nursing home she has improved and there isn't a need for it. When she starts to decline, we will get their services.
Hope this helps.
Debbie

 

[Margarita]

When an AZ person is at end of life (in UK) do they offer them pain relief as in morphine?

I ask this as my untie had morphine as I waited for her to pass away after a stroke , so have always wonder would they do this for my mother , but have been to scared to ask this question on TP for fear I do not offend hurt anyone that may read this


End of life I mean when the person with AD stop feeding stop drinking water as I have read on TP how they stop feeding giving the person water and love one there holding there hand as they wait to pass away are the love one offered pain relief for there love one as in USA ?

 

[rummy]

are the love one offered pain relief for there love one as in USA ?

Yes, they will give pain relief as needed. I'm not sure there is pain just from end stage AD but rather from any complications that can result from pneumonia, etc.
It is sad, they can't exactly tell us what they are feeling can they?

Debbie

 

[Lila13]

I just wish they'd TOLD me if they'd decided not to go on feeding my mother or getting water into her, so that I could have stayed with her and held her hand. I thought as she was being kept in hospital for 4 weeks to build her up they would put her on a drip if she wasn't eating and drinking. It wasn't a hospice sort of situation. I still can't understand what happened. She was still at the early stages of dementia, I think she decided to skip the later stages.

I don't even know whether they bothered to notice whether she was eating or drinking.

Lila

 

[rummy]

Lila,
My folks have signed a DNR and have a living will spelling out that they do not want any measures taken to keep them alive if there is no meaningful life to be had, and if there is a massive heart attack to not be resucitated.
Did your Mom have any such documents? It could be they were following her wishes if that is the case. Otherwise, I can't even fathom not being given those options for your Mom's care. I don't know how they could legally do that without family consent ! That is awful for you and I am so sorry for the way you lost your Mom.
Debbie

 

[Lila13]

Thanks, Debbie.

My mother hadn't signed anything about her treatment as far as I know, but went on about wishing she was dead (even before she was ill). Not all the time, after all on the 19th-26th April she was pottering about weeding her garden, put the dustbin out ("doing the rubbish" was one of her favourite hobbies throughout her illness), brought the washing in all by herself (when I'd suggested asking the carers if they could help her bring it in), she enjoyed all that sort of thing like a 4-year-old.

Yes, I was shocked about the way she was treated in that hospital. If they weren't going to use a drip why keep her in hospital anyway? I could probably have got more food and drink into her at home, and at least at home she wouldn't have been forced to sit in a semi-circle with people in more advanced stages of dementia and to listen to a noisy radio which she hated. Also at home she could have had windows opened so it wouldn't have been so stuffy.

I don't know if anything could have or should have lengthened her life, I do know that she could have spent those last few days in a more congenial environment, with people she knew around, instead of nurses who were obviously too busy to care.

Lila

 

[rummy]

I understand Lila, it doesn't always end the way we would wish it. My Dad died in a hospital at 41 years old of cancer. He wanted to go home so badly and couldn't. It was his last wish and he didn't get it. Back then there was no hospice or understanding of those things. People were born in a hospital and expected to die in a hospital.
Now my Mom is in a nursing home and my fear is that she will pass away there before I can get to her. I think it would haunt me to not be there for her in the end! But you know we don't have control over so much that has anything to do with this illness! We just have to do the best we can and understand that none of this is our fault.
Take care,
Debbie

 

[Amy]

Hiya Rummy,

we don't have control over so much that has anything to do with this illness

Never mind this illness, lots of life we don't have control over. We do have control over how we respond though. Rummy you know that you have been there for your mum as much as you can; you continually let her know that she is loved and valued; if there is any warning that her death is coming, then you will be at her side - and if there is no warning, then she won't have 'needed' you on that last part of her journey. All we can do, in all our relationships, is try and ensure that when we part from a person we are on good terms with them, and have said those things that we need to say.
Love Helen

 

[rummy]

Hi Helen,
I know your right and I know I've done all I can and am still doing all I can. Just when I leave the NH after a visit with my Mom and she is begging me to be taken "home", I do feel guilty when I leave her there. That is when I say to myself " this is not my fault" It helps.
I will take heart in what you have said about the end. I do guilt too well and am really working on that !
A work in progress
Debbie

 

[Lila13]

The fact that there was no warning doesn't necessarily mean my mother didn't need me, only that the staff didn't tell us, probably just too busy to notice her needs. Of course it is possible that she spent those last few days thinking we'd abandoned her there, she couldn't remember enough to count the days till Monday.

Of course I know there are plenty of people dying in much more tragic circumstances. Not that that helps.

Lila

 

[rummy]

Lila,
One thing I have learned is that you can't throw enough attention at AD, it is a bottomless pit. So you just do the best you can. I am afraid that the one day I decide to rest and not go to see my Mom could be her last and I wasn't there. What do you do? I would certainly hope the home would call me so I could be there in time but I know that isn't always feasable given we're dealing with humans! But thanks because now I will have a new question for the administration of the home. What is the procedure for calling family in an emergency??? I honestly hadn't thought of it since we've just been dealing with her care.
This has been a good thread and gives alot of food for thought.
Debbie