New member here. Mum in late stages of Alzheimer's and Vascular Dementia

[CateBee]

Hi, My name is Cate and I've been helping mum to live with her diagnosis for about 5 years now, although she was suffering early symptoms way before she was diagnosed. She's been in a nursing home for 4 years, having been admitted as an emergency with psychosis and then being found not to have the capacity to be discharged home.
Lately mum has lost a lot of weight, she was significantly overweight at diagnosis having been overeating for some tie (something we didn't realise was a symptom until much later). The nursing home staff tell us that mum is forgetting to swallow, she is pouching food and holding liquids in her mouth as if she no longer understands what to do with them. She has long since lost any speech that she had and I'm worried that she has gone blind. From what I've read this could mean that she is coming to the end of her life, what have other people experienced at this stage? She is 67 years old so her body is relatively young, but her seizures are becoming more frequent and harder to manage with medication.
Has anyone referred their loved one to palliative care at this stage?

Sorry for the ramble, I'm in a position where there are few people around who understand although they do care.

Thanks
Cate

 

[nita]

Hallo Cate, I'm sorry to hear about your mother and also that she is young to be going through this. I am surprised that the nursing team haven't called in the SALT team (speech and language therapy) which I have read about on here as being the team which advises on swallowing issues. It sounds as if she needs to take her nutrients in the form of thickened drinks.

It's hard to say what stage she is at as everyone is so different and, if she is having trouble eating, you don't know whether she wants food and drink or is just incapable of swallowing it. My Mum hasn't got the swallowing issues yet but she has pressure sores and is not eating much at all so I have had the palliative care (MacMillan) nurses come (she lives with me at home). She is in chronic pain so they have advised me about pain control. I am not sure what the situation is in nursing homes - do MacMillan nurses visit - I imagine they might. I would have a word with the CH manager to get her views on this and advice. Also, get a doctor to check her vision.

I hope you find that your mother's problems can be resolved. Best wishes, Nita.

 

[CateBee]

Thank you Nita. I checked with the home and they have referred mum to the speech and language therapist service. As yet she has not been seen although when I asked the home about thickened fluids they seemed bemused as if they hadn't considered that at all. This is all quite frustrating of course. I have made an appointment with mum's GP for Monday, I may ask for a referral to palliative care, if only so that I can be sure that those symptoms that can be managed are done so in expert hands.

 

[izzie]

feeding/hydrating/apsiration/advice

Mum, 82, lives with us and has late stage alzheimers. How long she's got we don't know.

Im struggling with feeding her. She is holding her food, not taking the food and/or falling quickly to sleep with food in her mouth.

Hydrating is a bit easier, but I'm relentless in continuing to offer her fluids. She's stage one re thickener, has all the forticep/ensure supplements as directed by dietician and DNurses are telling me to feed/hydrate her when awake. Every half hour is different. Her condition is very variable.

Has/is anyone going through the same? I feel I am going mad. Family say, 'feed her this, have you tried that?' I feel under enormous pressure he keep her fed and hydrated and sometimes I question if I am 'force feeding her' Bet that sounds awful!

I know if she's not hydrated she's at even more risk of infections. Yet to force feed her she's at risk of aspiration.

I know I am waffling. I just need to share - any advice appreciated.
thanks x

 

[LYN T]

Hi Izzie,

I feel very sorry for you and your MUm; my late Husband did the same with his food and drink. Sometimes he was ok (everything liquidised or thickened) other times he would keep the food/drink in his mouth and splutter. It's truly horrible to watch. When Pete used to fall deeply asleep when eating we used to clean out the food from his mouth. I really don't know what to suggest to help you. Pete was just 68 when he died from aspiration pneumonia. All I can say is that Pete was so weak that if it wasn't the pneumonia it would have been something else to take him on his final journey.

Don't think of yourself as force feeding your Mum=to be quite honest you would feel equally bad if you didn't feed her. It's a terrible stage and you have my sincere sympathy.

Take care

Lyn T XX

 

[Wendy C]

Thoughts with you. My mom is in a home. She has to have puréed food as she can't chew. She holds food in her mouth before swallowing. She likes a cup of coffee, but the other day she coughed and had not swallowed her coffee. As you can imagine we had a coffee shower. She was unaware of anything. It's so sad to watch her struggling to eat and drink. We take her chocolate buttons which melt in her mouth, but she dribbles as she does not swallow them. Horrible disease, which takes our loved ones. Xx

 

[smilingthrough]

You're not going mad.

Mum, 82, lives with us and has late stage alzheimers. How long she's got we don't know.

Im struggling with feeding her. She is holding her food, not taking the food and/or falling quickly to sleep with food in her mouth.

Hydrating is a bit easier, but I'm relentless in continuing to offer her fluids. She's stage one re thickener, has all the forticep/ensure supplements as directed by dietician and DNurses are telling me to feed/hydrate her when awake. Every half hour is different. Her condition is very variable.

Has/is anyone going through the same? I feel I am going mad. Family say, 'feed her this, have you tried that?' I feel under enormous pressure he keep her fed and hydrated and sometimes I question if I am 'force feeding her' Bet that sounds awful!

I know if she's not hydrated she's at even more risk of infections. Yet to force feed her she's at risk of aspiration.

I know I am waffling. I just need to share - any advice appreciated.
thanks x

Hi. Thank you so much for your post. I have no real answers for you but I wanted to reassure you that you aren't going mad. My mum has alzheimers. She recently ended up in hospital following a collapse owing to dehydration causing a urinary infection and borderline mal-nutrition at the residential home she was in. My sister has had to spend 5 hours every day at the hospital attempting to feed mum as the nurses simply endorse her record "refused" to all food and drink. My sister has been amazing and through perseverance and pure determination has managed to get enough food and fluid into mum to enable her to meet the criteria for discharge. I have no doubt that on occasions the way we were feeding mum could have been categorised as "force feeding" but what is the alternative? She does occasionally choke on her food and there is no worse feeling than seeing in her face how painful and frightening that is to her and knowing that in some way you have "caused" it. I have no magic solution and I torture myself with the possibility that mum is even trying to articulate a decision that she doesn't want to eat or drink because she doesn't want to go on! But how can you know?
Yesterday she was discharged to a nursing home. I have no confidence that they will be able to display the determination and love that enabled my sister to get my mum to eat and drink. It remains to be seen what happens from here!
But whatever reservations and confusions you have, please be proud of yourself for what you are achieving. Your mum is very lucky.

 

[Perdita]

If it's any help to anyone, my mum is getting to this stage, although sometimes she will eat . I give her drinking yoghurt and milk mixed together and she loves this, so it's quite a good way of getting quite a few calories into her without her having to eat and cough etc.

 

[gauravs1979]

Hi, My name is Cate and I've been helping mum to live with her diagnosis for about 5 years now, although she was suffering early symptoms way before she was diagnosed. She's been in a nursing home for 4 years, having been admitted as an emergency with psychosis and then being found not to have the capacity to be discharged home.
Lately mum has lost a lot of weight, she was significantly overweight at diagnosis having been overeating for some tie (something we didn't realise was a symptom until much later). The nursing home staff tell us that mum is forgetting to swallow, she is pouching food and holding liquids in her mouth as if she no longer understands what to do with them. She has long since lost any speech that she had and I'm worried that she has gone blind. From what I've read this could mean that she is coming to the end of her life, what have other people experienced at this stage? She is 67 years old so her body is relatively young, but her seizures are becoming more frequent and harder to manage with medication.
Has anyone referred their loved one to palliative care at this stage?

Sorry for the ramble, I'm in a position where there are few people around who understand although they do care.

Thanks
Cate

Hi,

Even my mom is going through the same thing. She hold her food and water in her mouth and doesnt take it inside, this has caused her very thin and weak. Doctor say's this is the last stage and nothing can be done now. Please let me know if you have found any solution to the problem.