And so it goes on...

Duggies-girl

Registered User
Sep 6, 2017
1,787
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.
I am actually worried now that dad is going to go further down the dementia road than any of us ever imagined. We didn't expect him to make Christmas 2018 let alone 2019 and I can see him just going on and on.

The drooping is horrible.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
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.
Palliative care can sort out seating & mattresses very quickly. Also the person qualifies forCHC funding & extra attendance allowance if they are still at home for night time care.

Seating can also be rented on a weekly basis, tilting chairs helps the head not to hang on the chest.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
I am actually worried now that dad is going to go further down the dementia road than any of us ever imagined. We didn't expect him to make Christmas 2018 let alone 2019 and I can see him just going on and on.

The drooping is horrible.
I am actually worried now that dad is going to go further down the dementia road than any of us ever imagined. We didn't expect him to make Christmas 2018 let alone 2019 and I can see him just going on and on.

The drooping is horrible.
we had this floppy head with Dad reducing ability to eat, speak & interact. Definitely need to seek help with sitting , maybe not nursing home but palliative care route. Wish I’d pushed more for palliative care for Dad at the care home. A lot of help available in your own home - have had this conversation already with Aged Mothers CMHT & District nurse.
 

Istern

New member
Jan 10, 2020
4
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![/QU
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!
Thank you @Bunpoots. We've been married now for 32 years and we are very private that I feel I am being disloyal to our relationship if I tell other people what is going on in our house but I realised I can not do this on my own. Regarding Donezepil, it makes sense as he takes his meds just before bedtime. He is also not quite himself in the morning as well as being restless during the night but no recollection of it in the morning. I think I will definitely ask his neurologist to get it the dosage lowered. He had a good day today :)
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
we had this floppy head with Dad reducing ability to eat, speak & interact. Definitely need to seek help with sitting , maybe not nursing home but palliative care route. Wish I’d pushed more for palliative care for Dad at the care home. A lot of help available in your own home - have had this conversation already with Aged Mothers CMHT & District nurse.
Dad is already on palliative care @DesperateofDevon and has been for nearly 2 years now. The hospice ring me once a month to see how he is. He is happy but just declining physically and mentally but his heart is strong so he could go on and on. I don't know where he gets the strength. I aim to keep him at home while I can but I need to be prepared. His GP the hospice and his oncology team have been great but none of them have a clue how long this could go on. It is horrible to watch.
 

Istern

New member
Jan 10, 2020
4
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.


Hi @Grahamstown, thank you for the link for the Dementia course. I have not even think of this. I have read online but it is a really good idea to do a course. I have signed up and I am looking forward to completing it.

I do have to learn all about how to speak to him, keeping calm and looking after myself. I am not sure I can leave him as yet but I think you are right to do this. We have to have a break and re-energise to be even better carers.

I am sorry that your husband isn't eating well. I hope I will be as strong as you.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Dad is already on palliative care @DesperateofDevon and has been for nearly 2 years now. The hospice ring me once a month to see how he is. He is happy but just declining physically and mentally but his heart is strong so he could go on and on. I don't know where he gets the strength. I aim to keep him at home while I can but I need to be prepared. His GP the hospice and his oncology team have been great but none of them have a clue how long this could go on. It is horrible to watch.
The SALT team & OT team were essential in gaining help with chairs beds etc, maybe the GP will make a referral so you can access this if you haven’t already got it.
Palliative care needs change & you sound as if things are slowly declining. It’s so horrid to watch & breaks your heart on a daily basis. Might be worth just getting a eyes on assessment perhaps
((((((((((Hugs)))))))))))
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
Compassionate Communication, which we discussed earlier, is definitely an ideal to aim for but so difficult to achieve in the face of this disease so I just want to say that I failed dismally this morning. Since it’s going to go on, and on, try better next time. He said he felt hungry this morning so I gave him the same as me, juice boiled egg toast and marmalade, cup of tea which he demanded but even with these desires, I find it most difficult and I definitely have to put food on a spoon, see if he will use it and end up putting it in his mouth. Eventually he resists and I stop, just like a toddler. Then he feels dizzy and is going to faint, at which point I get him back to bed and he recovers. He got up, or at least was awake and I got him up, early this morning which is always a bad sign. I can feel my blood pressure rising and when he is safely tucked up I can relax, recover myself and reflect. I think he thinks about all these things, hunger, tea, marmalade, but when it is put into action which any rational person would do, then he finds it difficult to carry out. That’s my reading of his behaviour anyway, and I end up having to feed him the food which he doesn’t really want. Another reflection is that his body clock is so messed up that he doesn’t know what time it is and he just functions on his own internal clock.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Compassionate Communication, which we discussed earlier, is definitely an ideal to aim for but so difficult to achieve in the face of this disease so I just want to say that I failed dismally this morning. Since it’s going to go on, and on, try better next time. He said he felt hungry this morning so I gave him the same as me, juice boiled egg toast and marmalade, cup of tea which he demanded but even with these desires, I find it most difficult and I definitely have to put food on a spoon, see if he will use it and end up putting it in his mouth. Eventually he resists and I stop, just like a toddler. Then he feels dizzy and is going to faint, at which point I get him back to bed and he recovers. He got up, or at least was awake and I got him up, early this morning which is always a bad sign. I can feel my blood pressure rising and when he is safely tucked up I can relax, recover myself and reflect. I think he thinks about all these things, hunger, tea, marmalade, but when it is put into action which any rational person would do, then he finds it difficult to carry out. That’s my reading of his behaviour anyway, and I end up having to feed him the food which he doesn’t really want. Another reflection is that his body clock is so messed up that he doesn’t know what time it is and he just functions on his own internal clock.
little & often with food routines - like a toddler. It’s sad as you must look at the man you love & wonder how this happened & why. it is easier with a parent in some ways I think, & I admire your resilience & patience.

I find Mum copes better with small amounts of food on her plate & then she will ask for pudding. Literally soft melt in the mouth low chew food ; now I can braise in 101 different ways to ensure that softness. At least I’m cooking for OH as well so it’s not so disheartening to find food not eaten & discarded.

Calories not quantity , & as for vegetables I sneak them into gravy &sauces!
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
little & often with food routines - like a toddler. It’s sad as you must look at the man you love & wonder how this happened & why. it is easier with a parent in some ways I think, & I admire your resilience & patience.

I find Mum copes better with small amounts of food on her plate & then she will ask for pudding. Literally soft melt in the mouth low chew food ; now I can braise in 101 different ways to ensure that softness. At least I’m cooking for OH as well so it’s not so disheartening to find food not eaten & discarded.

Calories not quantity , & as for vegetables I sneak them into gravy &sauces!
Scrambled egg for dad with lashings of double cream and butter so it is sloppy. I did this for breakfast and he ate half. I have just done the same for his dinner and he ate half. He is doing a lot of burping and groaning afterwards but swears that he is not in discomfort, just full up. I suspect this may be the cancer causing this but as long as he is not in discomfort or he starts throwing up again there won't be any intervention. I will offer him a high calorie sloppy dessert a bit later and he will probably eat that. The only vegetables dad gets will be in a tin of soup with added cream of course.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Scrambled egg for dad with lashings of double cream and butter so it is sloppy. I did this for breakfast and he ate half. I have just done the same for his dinner and he ate half. He is doing a lot of burping and groaning afterwards but swears that he is not in discomfort, just full up. I suspect this may be the cancer causing this but as long as he is not in discomfort or he starts throwing up again there won't be any intervention. I will offer him a high calorie sloppy dessert a bit later and he will probably eat that. The only vegetables dad gets will be in a tin of soup with added cream of course.
Put a small carrot on Mums plate, she recoiled as if I was trying to poison her!

if she could see the base for my Ragu sauce she’d shrivel in horror! To quote Wallace & Gromit- “lashings of cheese” are my best friend!
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
Starting to run into bowel problems now on account of him eating and drinking insufficient to work naturally. He has been on Laxido but that is too strong and he doesn’t drink enough water. Initially the doctor said stop it but he was just sitting constantly on the toilet trying to go and because he is so thin, the pressure is causing dents. On consultation with the doctor to try Lactulose but I fear a manual evacuation may be on the cards. I have had to do this a while ago when he first started on this phase but as his intake has gone down, the problem has gone up. This phase of managing the symptoms is grim but I doubt incontinence is any better and surely must be worse. Does this ring any bells?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,390
Kent
Will your husband eat prunes @Grahamstown They are the best natural and gentle remedy I have found. They can be pureed and mixed with cream or evaporated milk.
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
Will your husband eat prunes @Grahamstown They are the best natural and gentle remedy I have found. They can be pureed and mixed with cream or evaporated milk.
Anything that I can get into him is worthwhile. I shall try again but at the moment he swings between looking as if he really is dying and then perking up and then getting him to eat is a battle which the doctor has told me to stop. He is so supportive. I am going to purée some prunes and cream and see if that helps but as you can imagine I am fearful of swinging him the other way. Perhaps omit the Lactulose and try that. The wealth of first hand experience on the forums is priceless for so many of us even when we don’t have extreme circumstances but are just getting on with it. He has just spent at least half an hour sitting to no avail and back in bed looking spaced out and exhausted.
 

Avis

Registered User
Nov 2, 2019
105
I can look after him as long as I don’t have to see him sitting drooping over in his chair. Then I put him to bed where he usually goes to sleep. When I am with him I hate it. Today even the carer reported that she had to feed him to get him to take anything, and he has choking episodes now from time to time. If the TV is turned on he will keep his eyes open for a while. It’s a dreadful existence of which he is unaware. I can see this going on for some time.
I feel for you as my OH is the same. The blank face, the way he hangs over the side of his lift chair, he can't walk, doesn't want to eat or drink, refuses his medication, has to have help shaving, washing and dressing, takes off his clothes inappropriately, talks nonsense, can't even turn over in bed. It is so hard dealing with all of that and the incontinence (fecal and urinary). I look at him sometimes while he is sleeping and remember why I love him. it is harder when he is awake.
 

Grahamstown

Registered User
Jan 12, 2018
1,603
East of England
I feel for you as my OH is the same. The blank face, the way he hangs over the side of his lift chair, he can't walk, doesn't want to eat or drink, refuses his medication, has to have help shaving, washing and dressing, takes off his clothes inappropriately, talks nonsense, can't even turn over in bed. It is so hard dealing with all of that and the incontinence (fecal and urinary). I look at him sometimes while he is sleeping and remember why I love him. it is harder when he is awake.
My husband is just the same as yours but still trying to get to the toilet. He can’t manoeuvre himself in bed either. They are nursing cases now but no help unless you pay for it and even then the carers need to be in pairs these days to manage the situation. It’s grim isn’t it? And those little glimpses of the old sweet him are heartbreaking.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
Bowel problems, just another thing to stretch us to our limit. I feel for you @Grahamstown It's the thing I dread most. Up to now dad has been okay although he is worn out after the short walk to the bathroom. He had an episode a couple of nights ago when he wanted to go but couldn't. My husband was there then and he said it was a bit worrying but dad eventually went about 3 in the morning. I am thinking that I should cut down on the scrambled eggs maybe but then he will probably start to lose weight again. I need to weigh him sometime soon.

Dad is still sweet and very witty which I am very grateful for but it is all downhill now and yes, looking grim.