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And so it goes on...

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
His eating and drinking has reached a new low today. He flatly refused the food I put in front of him and said no to everything I suggested. Two cups of tea, a sip of water and his supplement is his only fluid, so need to check with the doctor tomorrow. I am feeling numb with this and can’t understand how he can even stand or walk but he can still do that.
 

cosipar

Registered User
Sep 9, 2016
24
I have been married for 48 years. The other day I cracked a joke about intimacy. Dear husband of mine was shocked, he said, how dare you say such thing, I hardly know you.
 

White Rose

Registered User
Nov 4, 2018
679
His eating and drinking has reached a new low today. He flatly refused the food I put in front of him and said no to everything I suggested. Two cups of tea, a sip of water and his supplement is his only fluid, so need to check with the doctor tomorrow. I am feeling numb with this and can’t understand how he can even stand or walk but he can still do that.
This must be so very sad for you - I just can't imagine. Maybe my partner will go the same way, I have no idea, he has a really good appetite at the moment.
 

White Rose

Registered User
Nov 4, 2018
679
I have been married for 48 years. The other day I cracked a joke about intimacy. Dear husband of mine was shocked, he said, how dare you say such thing, I hardly know you.
Goodness, sounds like material for the stand up comedians!
 

Duggies-girl

Registered User
Sep 6, 2017
2,037
His eating and drinking has reached a new low today. He flatly refused the food I put in front of him and said no to everything I suggested. Two cups of tea, a sip of water and his supplement is his only fluid, so need to check with the doctor tomorrow. I am feeling numb with this and can’t understand how he can even stand or walk but he can still do that.
Yes I think you are right @Grahamstown you need to check with a doctor because it does not sound good, that is not enough to sustain anyone, at least he is still having his supplement, I am guessing you mean the ensure or similar.

Dad is still eating 2 scrambled eggs a day but he sometimes leaves a bit.. It's a mystery to me how he has survived all of this but like your husband he can still stand and walk but I think it is a struggle for him to get from his bed to his chair as he is so relieved when he sits down.

He is not drinking as much as he should and I have noticed that he is only going to the bathroom twice a day, once in the morning and again before he gets in bed but he seems okay otherwise, just tired but he has been like that for a while. It's as though moving about wears him out and he is trying to conserve energy.

I hope the doctor can offer something useful tomorrow because it's wearing you down as it is me and it is not doing any of us any good.
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
I had my healthy heart check up this morning and the doctor asked me to tell him about the worries about my husband and naturally my BP soared. I think he did it on purpose. Anyway the upshot is that I am fine, and he said I was doing absolutely the right care, don’t force him to eat and keep him comfortable as possible, palliative approach is absolutely correct and he reassured me so I felt a great wave of grief as I left. A friend was there and she saw I was upset and comforted me which made me feel better. Otherwise I might have cried all the way home. So on it goes...
 

Justmary

Registered User
Jul 12, 2018
87
West Midlands
I am learning from you Grahamstown. My husband has been eating less and less, but I will try not to stress about it and just let him have whatever he wants. Another thing to deal with on this terrible journey.
 

Duggies-girl

Registered User
Sep 6, 2017
2,037
Yes same here, half of the scrambled egg this morning but I do wish that dad would think about having a drink when he starts coughing without me having to keep prompting him.

Glad your check went well @Grahamstown it's one less thing to worry about.
 

annielou

Registered User
Sep 27, 2019
1,638
Yorkshire
Good to know doing right thing and your heart check went ok. Glad you saw someone to comfort you it sounds very hard and sad for you. X
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
Thank you all so much for your kind words which are a great comfort. It is a very hard learning curve @Justmary and I have been very stressed along the way. Help on here and support from the doctor for what amounts to a starvation diet is the only thing that stops me really despairing, because I was beating myself up a month or two ago. The dietician has helped too but in the end you are the one trying to stop your loved one from starvation and that’s a huge burden. He is just hanging on to his mobility.
 

Florencefennel

Registered User
Jun 11, 2018
40
I have been married for 48 years. The other day I cracked a joke about intimacy. Dear husband of mine was shocked, he said, how dare you say such thing, I hardly know you.
Oh dear, I’m sure you didn’t know whether to laugh or cry...but it made me laugh...my OH went through a period of thinking I lived in the next village...obviously just popping in to run the house!!
 

Istern

New member
Jan 10, 2020
4
Hi, I hope you don't mind me joining the thread. My husband was diagnosed last September of Primary Progressive Aphasia underlying Alzheimers. I knew there was something not quite right with him about 4 years ago. He didn't like doctors or medication. He went to see the doctor when an incident happened when he was out. He was brought back home by police officers. This incident was 2 years ago. Anyway, to cut it short, he does not like to talk about his illness, does not like to prepare for the future, does not like help from outside and he is also not keen for me to seek help on how to support him. His behaviour is changing but only some parts of the day. He was placid and now quite snappy. He had a major snap at me on Monday and my chest felt heavy/tight and I felt sick. I went to see my GP and now I have to take medication to calm my nerves. I am so pleased I can chat with you. We do have 4 children but I don't want to make them worried. So thank you. I also have a question, my husband sits-up during the night and do not have a recollection of it when he wakes up. He also moans and talks. Do you think this is the medication side effect? He takes 10mg Donezepil. Thanks again.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,762
Nottinghamshire
Welcome to Dementia Talking Point @Istern

I’m sorry you’re struggling so much with your husband’s behaviour but I’m glad you’ve found us as you’ll find support here.

With regard to Donepezil it caused my dad to behave strangely and he had no recollection of his behaviour afterwards, although his was daytime behaviour. In his case a reduction to the lower 5mg dose solved the problem so it is worth speaking to the doctor about it.

I understand you not wanting to worry your children but I suspect they already know something is not right and would probably welcome the chance to discuss it with you. You don’t have to tell them everything - that’s what we’re here for.

Now that you’ve found us I hope you’ll continue to post/rant/moan - whatever...it helped me to get it off my chest when I was caring for my dad!
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
Hi, I hope you don't mind me joining the thread. My husband was diagnosed last September of Primary Progressive Aphasia underlying Alzheimers. I knew there was something not quite right with him about 4 years ago. He didn't like doctors or medication. He went to see the doctor when an incident happened when he was out. He was brought back home by police officers. This incident was 2 years ago. Anyway, to cut it short, he does not like to talk about his illness, does not like to prepare for the future, does not like help from outside and he is also not keen for me to seek help on how to support him. His behaviour is changing but only some parts of the day. He was placid and now quite snappy. He had a major snap at me on Monday and my chest felt heavy/tight and I felt sick. I went to see my GP and now I have to take medication to calm my nerves. I am so pleased I can chat with you. We do have 4 children but I don't want to make them worried. So thank you. I also have a question, my husband sits-up during the night and do not have a recollection of it when he wakes up. He also moans and talks. Do you think this is the medication side effect? He takes 10mg Donezepil. Thanks again.
My husband has Alzheimer’s disease with mixed dementia two years ago now but I too have struggled with coping with the symptoms. They are different but similar to your husband’s. I decided to do the understanding dementia course with the Wicking Dementia Centre online which is free and I have put the link below. If you don’t feel that it’s any good for you now they do offer it frequently later on. Otherwise ask on the forums for help with symptoms because that got me through. Now I just suffer with the constant decline but my doctor and dietician are supportive and I have got help with personal care. He has had 2 respite stays and I have booked a third end of February. We are self funding so it does depend on your own circumstances.

However to give you an idea, today the carer bounced in, he met and greeted her, said he was fine! She said when’s he going to respite, he said what’s that, I made a facial signal to her to avoid it. I said you need a little holiday and he said we are going together aren’t we and I just said um. I wouldn’t have dreamed of saying no you are going on your own and I am having a break from caring for you. He can’t accept that he is ill and that I need any relief. He won’t remember and I won’t tell him until he goes and help him with it. Later on she apologised for being so open and she will learn from that. Being economical with the truth, fudging the answer and keeping him calm are absolutely necessary for me, it makes no difference to him. I had to learn what I call ‘dementia speak’, it’s lonely because you lose the person but they have gone anyway. The links to it are on the website and I am sure one of the moderators will post it if you can’t find it. I can look it up and post it otherwise. My main stress now is his refusal to eat more than meagre amounts but he will drink Fortisip twice a day. It’s awful and he has burned up all his fat, muscles are thin and his strength is ebbing and there is nothing I can do except press on, and on.
https://mooc2.utas.edu.au/index.php
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
My husband has Alzheimer’s disease with mixed dementia two years ago now but I too have struggled with coping with the symptoms. They are different but similar to your husband’s. I decided to do the understanding dementia course with the Wicking Dementia Centre online which is free and I have put the link below. If you don’t feel that it’s any good for you now they do offer it frequently later on. Otherwise ask on the forums for help with symptoms because that got me through. Now I just suffer with the constant decline but my doctor and dietician are supportive and I have got help with personal care. He has had 2 respite stays and I have booked a third end of February. We are self funding so it does depend on your own circumstances.

However to give you an idea, today the carer bounced in, he met and greeted her, said he was fine! She said when’s he going to respite, he said what’s that, I made a facial signal to her to avoid it. I said you need a little holiday and he said we are going together aren’t we and I just said um. I wouldn’t have dreamed of saying no you are going on your own and I am having a break from caring for you. He can’t accept that he is ill and that I need any relief. He won’t remember and I won’t tell him until he goes and help him with it. Later on she apologised for being so open and she will learn from that. Being economical with the truth, fudging the answer and keeping him calm are absolutely necessary for me, it makes no difference to him. I had to learn what I call ‘dementia speak’, it’s lonely because you lose the person but they have gone anyway. The links to it are on the website and I am sure one of the moderators will post it if you can’t find it. I can look it up and post it otherwise. My main stress now is his refusal to eat more than meagre amounts but he will drink Fortisip twice a day. It’s awful and he has burned up all his fat, muscles are thin and his strength is ebbing and there is nothing I can do except press on, and on.
https://mooc2.utas.edu.au/index.php
oh my lovely my heart goes out to you, it’s so difficult I know.
I coaxed Dad to eat ice cream & cream ( any form of calories better than none) but even towards the end that was refused.
Life’s phases are hard to watch at times & as long as your OH is pain free & comfortable that is of great solace & comfort to you.
Palliative care it’s a strange moment when you hear those words .... another grieving process to work your way through.
Please know I’m here & empathise
Sending love & ((((((((((((((((bighugs)))))))))))))))))))
Xxxxx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
I had a great wave of grief as I left the doctors after discussing his state. It fades and I carry on but keeping my cool as he sits drooping over any food, mostly blended into soup, is terrible. Thanks my dear for your kindness.
Anytime lovely, always here for you
Xxx
 

Duggies-girl

Registered User
Sep 6, 2017
2,037
It is awful watching them decline. I had a talk with my brother about dad because I just don't know how long we can keep him at home. I am aiming for his 90th birthday in a few months but I don't think he would remember it was his birthday other than for a minute at a time.

He is happy enough and luckily still continent but he has no energy to walk any further than the bathroom, he is always asleep with his head drooped forward and eats little. We have no way of knowing if it is the dementia or the cancer but I suspect it is the dementia because he has no other discomforts.

There will come a time more likely sooner than later when we can't look after him and I suspect that he will need a nursing home I don't know how he has not fallen over but he just goes on. He must be remarkably strong willed. It is very wearing.
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
It is awful watching them decline. I had a talk with my brother about dad because I just don't know how long we can keep him at home. I am aiming for his 90th birthday in a few months but I don't think he would remember it was his birthday other than for a minute at a time.

He is happy enough and luckily still continent but he has no energy to walk any further than the bathroom, he is always asleep with his head drooped forward and eats little. We have no way of knowing if it is the dementia or the cancer but I suspect it is the dementia because he has no other discomforts.

There will come a time more likely sooner than later when we can't look after him and I suspect that he will need a nursing home I don't know how he has not fallen over but he just goes on. He must be remarkably strong willed. It is very wearing.
I simply don’t know how he keeps going on his feet either because he is just the same as your dad, and I can’t bear to see him sitting drooping over and he breathes all funny. He is better lying propped up in bed.
 

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