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Discussion in 'I have a partner with dementia' started by Grahamstown, Jul 27, 2018.
I agree prunes are excellent. They may be easier to take chopped finely and mixed with custard.
Today I fed him in bed for the first time because he has been unable to muster enough strength to get up and dressed. I have started negotiations to get some help for him. He is so weak that I am worried about falls when I try to attend to his personal care alone. This past week has seen a significant decline and I am heartbroken as he lies in bed making little remarks about his paintings on the wall as if everything is quite normal. I think that is the worst aspect of this disease, having to watch fully aware of what is happening while the person is often oblivious. I think that what I have been saying here over the past week is more than just having no appetite or anything else but a step change downhill. The doctor was right when she told me to start putting care in place, it’s just a matter of finding reliable help which is easier said than done.
I have had my husband on fluids , soft food etc for months now - I just sort of cook veges then purée them add beef or chicken stock and it’s soup ! But it’s so tiring not being normal - tonight we went to the local pub. Norm felt sure he could eat fish and mash. About 2 mouthfuls and we had to come home.
I do feel so tired of this life sometimes- but the sundowning is the worst aspect. I don’t accept it well. I do wish there was some way of changing that ! Every night he doesn’t know where we are.
Dear @Grahamstown - I am sorry to read your entry above. It’s been about 6 weeks since I had Norm in hospital as he couldn’t keep any food down. He was melting away and it was impossible not to be very distressed as you probably are often. The Dr was able to open his oesophagus a little.
It’s such a hard life we have -
I’m ok for the most part of every day, but in the evenings and at sometime in that day - I am not alright.
Wonder of wonders I have contacted the agency who saw him earlier this year and they have offered me two two-hour visits so I am hoping to start that next week. Oh @Mudgee Joy I don’t know what I would do if I couldn’t get it all out here. Days go by in a ghastly version of Groundhog Day and then there is a mini crisis. He can eat and chew perfectly well but just won’t because he is not hungry and can’t summon up the energy. I have to virtually or actually feed him every mouthful and every drop of drink. He is skeletal now so no wonder he has no strength. No way could we go to our favourite pub for fish and chips and beer. Must try to buck up a bit now but have been up and down the stairs more times this morning than I ever have been before. Probably the only exercise I shall get today!
You sound exhausted & I can’t imagine how awful you feel at this moment in time.
You need to have some time to process what’s happening, the decline seems quick. You need help. Can the district nurse not help you by getting the suppositories done.
@Grahamstown Dad is still in bed and thinking about getting up. He got up at 1.30 yesterday so I am hopeful that he will be earlier today but as it is already 1.10 I am not hopeful. Other than that he is fine.
@Mudgee Joy Dad has been on soft food for ages, rice pudding etc with added cream. I had fish last night, not battered or with chips just a piece of smoked mackerel and he badgered me for a piece. I foolishly gave in. He ate 2 bites and was promptly full up and spent the next couple of hours burping and being uncomfortable. I won't relent again.
On a brighter note, I have just had a 2 week holiday, the first in over 2 years. I went with a friend. My brother and his family really put themselves out to cover me along with a good bit of help from my husband who really was not up to coming away because the holiday was a bit of a mad and quiet hard trip to make. I keep putting things off because I know or hope that I can do them later but this trip was a here and now thing and would not be repeated so I went although the decision to go was made the day before we left. I am so glad that I went as it did me the world of good and I feel so much better. I am back looking after dad now and planning the next one off trip in 2 years time. Will I still be here looking after dad then, who knows.
@Grahamstown I think dad is getting up now because he just asked me where his pants are, they are right in front of him and he has 2 minutes to get up and beat his time of yesterday.
I couldn’t do what you do. Really - hats off to you. My Dad before he went into CH would get up for me but not for Mum.
Mum meanwhile has always had a fondness to taking to her bed-
If someone looked at her the wrong way, if she felt she wasn’t centre of attention, if you didn’t agree with her or any independent thought that didn’t suit .....
Off to bed she went!
oh & if you argued with her well it could be the silent treatment & bed for weeks!
I kid not!
At least with carers the PWD seems to respond more positively to direction.
@DesperateofDevon Dad is a sweetie really and I appreciate that I have it easy compared to many on here. He is polite, compliant and still thoughtful which is very unusual apparently but he has no short-term memory and if I leave the room and come back in he wonders where I have came from.
He is still amazingly witty as well so we do have a laugh and a joke but this life is very very boring and I did not expect him to last this long. 16 months ago he was diagnosed with an advanced cancer and palliative treatment only, his team were talking about hospice and morphine patches which frightened the life out of me and gave me the impression that he was dying so I decided to make things nice for him in his final months and keep him at home, as you do.
Well here we are looking at another Christmas and I am sure he will still be here.
I read your post @DesperateofDevon and that is a lot to cope with and I agree, stepping back is your best option. I am very lucky in that dad's GP is marvellous and all his hospital consultants have been just as good.
Hope things improve for you.
Oops early post!
My Dads in a care home, since 11/2018
It breaks my heart that I can’t look after him & keep him safe. I used to have him come to stay for respite care (for Mum supposedly but it was more for Dads benefit!)
It made me realise I had to get him into care, I couldn’t keep him safe in my home or his 24/7.
Dads lovely , though not sure he knows who I am at times ...., that’s been interesting to say the least! But he’s got a lovely temperament & has a dry sense of humour & is still full of fun on his better days.
He thinks he’s at the home looking for work locally. Conversation has to be on his terms & I can see him trying to make sense of the words, easier to look at the paper / book with him & respond conversationally.
I miss my Dad but still treasure the odd few minutes of cognitive conversations I get here & there. His good nature makes him a firm favourite with staff & residents alike, that’s of great consolation to me.
So basically a long winded way of saying I really admire what you are doing for your Dad; but please ask for help before you need it.
It has been a very difficult couple of days and I have felt very exhausted, mentally, today but I have got a bit of help organised, got some food into him and the supplements plus the Movicol so I hope his system will function properly now. I could have waited for a district nurse but I would have to have waited and now I have unblocked him he is more comfortable. By the end of the day I just got him into bed and went out for a restorative walk, and my daughter called and that always helps. She has been on holiday for ten days so it was lovely to get her call. I went round to the office to put the paperwork in for the care worker and it was at a nearby care home which I had overlooked. They showed me round and for one moment I thought how wonderful it would be if someone else could take over for a short time. They were very welcoming and have respite beds so that is a definite option. As mudgee said, it wears you down does caring for a person with dementia, and I have felt it over the past couple of days. I have readjusted the menu and if he is up long enough to eat, it is working, it’s just not much to get his system to work.
Respite care sounds a sensible option, you sound exhausted by it all.
When Dad went into respite I slept properly for the first time in a couple of years & came out in shingles!!
Things have settled down now at a lower level and he is on supplements for nutrition and Movicol for helping his gut. So it’s a bit like a baby, in one end and out the other, what was the old joke? Feed milk powder and use a feather duster! Friends came for coffee this morning but he was too exhausted to come down and see them. The husband is obsessed by trying to suggest support such as dementia cafés, a personal visitor, reading, TV you name it. Fortunately his wife knows and keeps saying that he is past most of that now, which is true. He would never watch tv unless I turn it on or suggest it, and all he can manage is a picture book, there is no more conversation and as for going out, he is neither strong enough or interested enough to go. I have sent the link to the Utas dementia courses to him because I think it might help. I feel less stressed today thank goodness.
Pleased to hear you are less stressed & you sound in a better place today.
Some people like to problem solve, but with dementia it effects everybody differently. My Dad has benefitted from CH activities. Infact he has a better quality of life now than Mum ( still in own home as she requests) who isn’t as far down the dementia path as him.
How sad is that
Very sad x
Hello all you lovely carers!! None of this is easy. Seems as we manage one level - they go to the next level!
But I had a night off and feel better for it. My niece is keen to help and is studying nursing so I pay her to help care - works for both of us. But it can’t be often as she has three children and they are passed on to my sister, their grandmother !!
I suspect if my husband go could to respite care at a care home - I would jump at it !
But he is cognitive enough to get very down if I’m not home with him each night.
I think @Grahamstown we all have different versions - but none are good !! Just have to count my blessings - my husband , like @Duggies-girl ’s dad - is polite and is often clever with words (when he is close to a real subject).
When he doesn’t keep food down I get very stressed.
Blessings to you all and thanks for sharing. PS @DesperateofDevon - I love Devon and Exeter- but travel days are limited now.
I would echo your comments @Mudgee Joy regarding my still sweet husband, and I am grateful that I don’t have to deal with aggression and hostility. I still get very exasperated by his evening behaviour as I believe you do too. We have settled down to a new regime regarding the eating and drinking, and I am not able to get him out except by a certain amount of pressure. I am not sure that it matters. I have had two cheering things today. A neighbour popped in to give me a cinnamon bun for him knowing that he is not eating much. One of his friends and colleagues called up to ask after him and give me some support too. Moral support is the best I find.
It has been suggested that now is the time for pureed food. Oakhouse and Wiltshire Farms both do a range for lazy days. I will batch cook veg and season well and freeze in small pots. Breakfast will be smooth cereals fortified and the second meal fortified soup.
Benefibre is a soluble fibre, slippery elm can be added to some things and inulin slightly sweetens these help with slippage by coating bowel
For those squeamish I remember someone saying pooh is food in another form,
I think I shall be pooh monitor when my husband gets home. I am already wee monitor to check colour.
I shall just think Zen! Another two for my growing CV
Lazy days was ironic by the way to any non Carers who read this thread!