A difficult question to ask

[Meppershall]

Hi Everyone

It's been a while since I posted, because although things have remained relatively stable for the past few months I fear that all of a sudden Dad has taken a down turn.

He has Lewy Bodies Dementia. He has had bouts of challenging but manageable behaviour for a while now and his medication has been tweaked recently, taken off off haloperidol, increased memantine dose and put on quietapine to try to keep him calm and settled. He's getting used to this new medication but he also seems much more advance and confused than a couple of months ago.

He is now on a pureed food diet due to many choking episodes, and is constantly falling due to a low blood pressure issue.

My question, and I know this is a very difficult one to answer, but with all of the experience out there - does this sound like his body is beginning to shut down ? The food concerns me the most as it would suggest that his muscles are failing him. I have never been close to my Dad but seeing him like this is horrendous and affecting me more than I thought it ever would, visiting is so hard but I know I have to go, to make sure he is being looked after.

Emotionally I am being pulled in all directions, but want to prepare myself because I know what the eventual outcome will be.

Thanks everyone for any information x

 

[Georgina63]

Hi Meppershall,
Sorry I'm not able to answer your question, but just wanted to say sorry to hear about your Dad. My Dad is not as advanced, but I too have seen a significant decline in him recently and as you say, it's heartbreaking to watch. It sounds like you are doing all you by being there to make sure he is receiving the best care possible. Take Care. Gx

 

[stanleypj]

I can well understand your anxiety. But I don't think anyone on TP can answer your question with any confidence.

However, the fact that he is on pureed food to lessen the risk of him choking may not be as significant as you think. Many people are being fed pureed food and they are not all close to death. Even pureed food has to be swallowed so I'm not sure that you can or should be assuming that his muscles are failing him.

Similarly, you mention the new medication. A change in medication appears to have had some welcome positive effects, but I suppose it's possible that it could also be causing confusion.

I hope other people may be able to offer other views but, if I was as worried as you understandably are, I would be seeking qualified medical opinion about the recent changes you have observed.

I hope you will find some reassurance.

 

[Aisling]

Hi Everyone

It's been a while since I posted, because although things have remained relatively stable for the past few months I fear that all of a sudden Dad has taken a down turn.

He has Lewy Bodies Dementia. He has had bouts of challenging but manageable behaviour for a while now and his medication has been tweaked recently, taken off off haloperidol, increased memantine dose and put on quietapine to try to keep him calm and settled. He's getting used to this new medication but he also seems much more advance and confused than a couple of months ago.

He is now on a pureed food diet due to many choking episodes, and is constantly falling due to a low blood pressure issue.

My question, and I know this is a very difficult one to answer, but with all of the experience out there - does this sound like his body is beginning to shut down ? The food concerns me the most as it would suggest that his muscles are failing him. I have never been close to my Dad but seeing him like this is horrendous and affecting me more than I thought it ever would, visiting is so hard but I know I have to go, to make sure he is being looked after.

Emotionally I am being pulled in all directions, but want to prepare myself because I know what the eventual outcome will be.

Thanks everyone for any information x

Of course you are anxious. Am assuming the SALT team have assessed his swallow. My late Mum was on puréed food for ages and also on some liquid food supplement. Can't remember the name. Falling worries me more. Can you talk to his doctor?

Aisling xxxxxxxx

 

[LadyA]

Aisling and Stanley are right. You really need to get the doctor's opinion on how things are. Some people remain on a puréed diet for a long time.

 

[Meppershall]

Thankyou everyone, that's made me a little less anxious.

It's such a contradiction because some days I look at him and wish I could help him out of this situation, but then he takes a downward turn and I wish he could get better - stupid I know, there is no getting better.

I will try to see if I can talk to his doctor and see where he feels Dad is with this disease.

Thankyou again x

 

[lemonjuice]

Aisling and Stanley are right. You really need to get the doctor's opinion on how things are. Some people remain on a puréed diet for a long time.

Indeed! My mother,although physically still able to swallow. has been on pureed food for well over 3 years now, as she forgets to swallow and needs reminding.