If he is beginning to have trouble getting food down then you could ask your GP about ensure drinks (or similar) which are, I believe, available on prescription.
And so it goes on...
- Thread starter Grahamstown
- Start date
The doctor called this morning and we had a very constructive conversation, when we discussed his weight loss/appetite loss/exhaustion etc. and she discussed it thoroughly, understood and gave me good advice not silly stuff. I am doing alright and she is prescribing a vitamin/mineral/protein supplement as well as other things. I think that looking after someone with dementia you need this sort of validation every now and then to know that you are doing all you can in the face of this inexorable decline which is in the person’s best interests. I think she was validating my view that up to a point there is nothing more you can do, awful to accept when everything in modern culture strives for a cure or at least some helpful treatment. Unless there is organic disease, there is very little you can do other than palliative care and have to accept that.
That sounds like a very positive discussion with the doctor @Grahamstown. You’re right - it’s just good to have some validation/confirmation that you’re doing ok.
Palliative care of a loved one is hard. My Dad is fading away daily at the CH. I am just grateful that the CH is so lovely & a caring environment. The process of dementia is uncertain & hard to watch loved ones fade-away. If Dad doesn’t eat sometimes it’s because he forgets how.
Other times he seems to enjoy small tastes of different food stuffs. Protein drinks are helpful, but sadly loss of appetite is part of this disease.
I spend much of my time with Dad just sitting, even holding his hand can be too much but at some point he might smile at me & all is well with the world for that fleeting second.
Other times he seems to enjoy small tastes of different food stuffs. Protein drinks are helpful, but sadly loss of appetite is part of this disease.
I spend much of my time with Dad just sitting, even holding his hand can be too much but at some point he might smile at me & all is well with the world for that fleeting second.
This morning after the usual late start and constant reminders to drink and eat, followed by sitting doing nothing, I suddenly remembered a tip I had read on Talking Point. So I turned on the TV which I rarely have done before at this time of day, and found children’s TV and he is sitting happily laughing at the pre-school children’s programmes. I hope it will keep him happy for a while.
I do hope it works. The CBeebies held his attention and he ate all his lunch while watching it, not without lots of prompting but he did finish it without complaining. I shall try it again and also see if I can find Laurel and Hardy.
Thinking of you, I have not been on as mine is in hospital via A&E for the last 12 days, he is still on antibiotic.
He has gone down a step, we had the SALT team do a home visit just before he was in crisis. In testing she felt the effort of eating was too tiring, so I am planning pureed meals, homemade thick soup smooth soups. I have been experimenting with protein puddings to go with veg soups. Breakfast are easy. I researched the main producer of pureed meals, they seem to supply hospitals, carehomes and some retailers. I will plan on one a day.
All fluids are thickened.
I have a neighbour as a cleaner, she is quick but we also have a wide conversation, she cared for her Dad so understands the issues.
I am waiting on a care package, it is called a Section 2, so to anyone else this is what to insist on.
My husband said it would be easy to Section him, in a flare of humour.
I think you do need to see a doctor you need to do so for your sake. It covers you.
The problem is we can take a horse to water but cannot make it drink.
I have spent the time between visits arranging lifts as I have no transport, chasing Adult Services, tweaking the home in a last ditch effort to keep him at home, I want him here and he wants to come home. I have been introducing the idea of carehomes if either of us need one. I emphasis WE everything.
The respite experience we shared was a window of opportunity that I can refer too as it was positive.
I have done things in my own time, no TV just music, radio and blessed silence.
I have had the odd glance on here but that is all, I have sorted out a few facts. I will post when I have time.
Take great care of yourself, xxx
He has gone down a step, we had the SALT team do a home visit just before he was in crisis. In testing she felt the effort of eating was too tiring, so I am planning pureed meals, homemade thick soup smooth soups. I have been experimenting with protein puddings to go with veg soups. Breakfast are easy. I researched the main producer of pureed meals, they seem to supply hospitals, carehomes and some retailers. I will plan on one a day.
All fluids are thickened.
I have a neighbour as a cleaner, she is quick but we also have a wide conversation, she cared for her Dad so understands the issues.
I am waiting on a care package, it is called a Section 2, so to anyone else this is what to insist on.
My husband said it would be easy to Section him, in a flare of humour.
I think you do need to see a doctor you need to do so for your sake. It covers you.
The problem is we can take a horse to water but cannot make it drink.
I have spent the time between visits arranging lifts as I have no transport, chasing Adult Services, tweaking the home in a last ditch effort to keep him at home, I want him here and he wants to come home. I have been introducing the idea of carehomes if either of us need one. I emphasis WE everything.
The respite experience we shared was a window of opportunity that I can refer too as it was positive.
I have done things in my own time, no TV just music, radio and blessed silence.
I have had the odd glance on here but that is all, I have sorted out a few facts. I will post when I have time.
Take great care of yourself, xxx
You too Alice. I'm sorry your husband is still in hospital and hope there will soon be a way to help him and you. x
Thank you I have met with a lot of kindness, three members of the local book club have offer to give me lifts if available. We no longer can attend meetingsYesterday a nurse made me a hot chocolate as the vending machine was out of order and the restaurant is closed weekends.
Many things are falling into place, I have found out
a few things out and will try and post these to share.
I really feel we should not have to search but there should be a clear guide.
Someone from AgeUk National office was an expert on financial assessments for example.
Your time at Launde Abbey sounded good, I hope you benefited from it and still feel the affects.
With love x
Just read this as I have not been on here much. I had a similar conversation with GP as the SALT therapist suggested ensure drinks. Budget?as the GP did not agree. I said again I was repeating what the SALT advised! She did say one of her team would look into it! I show the note I have which was kept!
Now he has progressed from soft moist to puree. He does find it easier to eat, the chewing with dysphagia is tiring.
I know that at some point we have to let go, but when.
I noticed even in hospital now he is off the drip signs of mild dehydration soon show. The skin is a good clue, my arms are smooth but if I do not get enough fluid the skin starts to shrivel.
We can but do our best, no more. I cannot use distraction techniques as concentration is needed with swallow issues. I do not want him choking. I feel he is accepting the need for care more, so I trust the inevitable decline will be happy and peaceful whenever. So I really feel for you. Take great care of yourself. Xxx
The pigeons came home to roost today from the meagre diet he has had for a while now. I thought that I had been vigilant enough to make sure that he went every day, giving him roughage but because he was having so little food as well, it didn’t do the trick. Yesterday he started trying to have his bowels open without success for several tries, was distressed and in great discomfort so I gave him a dose of Movicol. Today he was very distressed and still unable to go so I resorted to emergency measures, I got out the emergency glycerine suppositories and rubber gloves liberally coated with vaseline, warned him that it would hurt. Then I put him to bed on his side with children’s TV on and he rested and this finally gave him some relief. I shall give him movicol again tonight. What a circus and I shall have to see how it goes! These problems pop up like small storms but not eating much has consequences as anyone who has been on a reducing diet will know. He is having all the extra supplements now together with whatever food I can get into him but bowel discomfort affects appetite too. I got a mailing from the dietician via the doctor today with leaflets describing all the tricks and recipes, already some of which I am doing, which made me feel quite exhausted. A home visit has been scheduled for November, yes November! Goodness knows how he will be by then but it’s something from the medical people.
It’s getting soul destroying trying to get him to eat but I will try anything now even the most ‘unhealthy’ things. The dietician leaflet actually says that, don’t worry about balance, just try anything. I don’t want to send him the other way, just get him to eat.
Thanks for another tip, both useful. I think the Movicol from yesterday has started to work after the suppository unblocked him. It’s certainly the correct way to do it, and now I need to find out how often to give him a dose. It’s quite safe so one a day should work.
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