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And so it goes on...

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
Finally... he is much more comfortable now, such a relief. Refused to have a shower with the carer this morning so he is getting quite contrary over personal care as well as food. I had a new strategy this morning when he demanded tea, and gave him a cream enriched soup, and said he could have the tea when he had finished the soup. It worked, so together with fortisip and a banana he had a front loaded meal because he won’t eat a great deal more today except for another fortisip plus whatever else I can tempt him with.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Oh bless you

please stop worrying about the food issue,
I know it’s hard to not. it’s now the time to give Dad whatever he fancies to eat or drink.

Weight isn’t really important now Dads requirements & desires are comfort & being spoilt.
Spend your precious time together with cuddles & enjoying the company of each other.

I enrich soup with clotted cream stirred in, it sweetens food & adds calories. Fortisip can taste foul, but ice cream always tastes good. Enjoyment is now of paramount importance, in my experience & will later bring great comfort in memories

take care lovely
((((((((Hugs))))))))
 

Duggies-girl

Registered User
Sep 6, 2017
1,823
Oh bless you

please stop worrying about the food issue,
I know it’s hard to not. it’s now the time to give Dad whatever he fancies to eat or drink.

Weight isn’t really important now Dads requirements & desires are comfort & being spoilt.
Spend your precious time together with cuddles & enjoying the company of each other.

I enrich soup with clotted cream stirred in, it sweetens food & adds calories. Fortisip can taste foul, but ice cream always tastes good. Enjoyment is now of paramount importance, in my experience & will later bring great comfort in memories

take care lovely
((((((((Hugs))))))))

I agree with that @DesperateofDevon Dad is very happy and is always singing little tunes which can drive me round the bend sometimes but he happy and that is what counts.

He is blissfully unaware that he is ill and believes that he is fit and healthy.although I am baffled as to how someone as ill as he is truly believes that he looks after himself and regularly goes out for walks when his walking frame is right there in front of him.

He told me the other day that he needs to pop up the road to the barbers. 'It won't take me long, it's not far' he said. He can't get over the doorstep unless there are 2 of us there so I gave him a haircut.

It's amazing how much cream I can get in a scrambled egg.
 

AliceA

Registered User
May 27, 2016
2,706
I have inulin and benefibre in. The former is slightly sweet and helps with 'slippage' the benefibre can be put into liquids so I try to adjust the fluid so no extra need be considered although I try and get extra fluid in.
Often I say how thirsty I am so drink and it is copied.
I do try to be poo monitor too! Now can I add that to my CV?
The things we do for love!
 

Duggies-girl

Registered User
Sep 6, 2017
1,823
I hadn’t heard of those and I looked them up. That might be another option. Do you still need to drink lots of water because that’s proving difficult to achieve?
It doesn't have to be water @Grahamstown Any liquid will help. Juice, squash, milk even a cup of tea, it's all fluid.

I never drink water, it's yuk but it's palatable if I add some juice or even a tea bag. Fizzy drinks are okay too and fizzy sparkling water is really nice compared to tap water. We drink lots of Vimto. It's my favourite and dad loves it. You can buy it in the fizzy form and it is very nice. Lucozade works well too and it has the association of being good for you if you don't feel too good yourself.
 

AliceA

Registered User
May 27, 2016
2,706
Fluid is always advised but both these help. The inulin seems to lubricate the benefibre is soluble fibre but all fibre needs fluid of some kind.
I cannot serve jelly because of dysphagia bug I would if I could. Soup in a mug can be sipped, all helps.
I like water and try to drink a lot, we had little else as children. I hated milk but we had no fridge.
I do flavour water sometimes with a dash of lemon, sliced ginger steeped is good hot or cold. I keep reusing the slices. I make this by pouring on boiling water, then drink hot or cold. I love ginger so end eating the ginger. Whe much of the heat has gone.
Nowadays I buy spiced teas too I like pukka for the range. I have been trying the nighttime ones too.
There is a good dark chocolate almond milk, if I buy three at a time I get it for £1 a litre.

I wonder if the laxidol could be given in smaller doses, use half a sachet? It draws fluid to the bowel.
My mother used to swear by a pinch, yes a pinch, of Epsom salts first thing in the morning.

The problem is quite distressing for people, being inactive does help either.
There is a soft padded cushioned toilet seat on the market.
A stool to raise the feet can put someone in a better position to relax the sphincter muscle.

Everyone is different but sometimes trying something out on oneself helps one understand how it works. Often things are Trial and Error.
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
Thanks all for suggestions, of which the Lactulose worked but it’s been a bad week all round. I have now joined the being woken up in the night brigade, twice last night, there has been a sudden deterioration, very confused and disorientated probably due to starvation diet. I feel very tired today. The weekends are always awful even though he doesn’t know it’s the weekend, very strange. I have booked respite and just have to keep going.
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
I don't like weekends anymore @Grahamstown Life now is very boring but weekends are even more boring. I am sorry that you are being woken now in the night.
It is a big change because he has always been very quiet in the night. He has no recollection of going walkabout last night, which was the worst so far. In fact he suddenly asked about his sisters this morning but couldn’t remember their names or anything about them so he really is getting much worse. So sad.
 

White Rose

Registered User
Nov 4, 2018
420
It is a big change because he has always been very quiet in the night. He has no recollection of going walkabout last night, which was the worst so far. In fact he suddenly asked about his sisters this morning but couldn’t remember their names or anything about them so he really is getting much worse. So sad.
Such a frightening journey for the PWD and the family, thank goodness the PWD isn't really aware of everything but even so is it worse for them or worse for us carers seeing them deteriorate and not knowing what's coming next? A few evenings ago my partner asked to visit his parents, you know it can happen but that doesn't make it any less scary. Yes it is so sad
 

White Rose

Registered User
Nov 4, 2018
420
I don't like weekends anymore @Grahamstown Life now is very boring but weekends are even more boring. I am sorry that you are being woken now in the night.
My daughter introduced me to 'Say Yes to the Dress' on Quest (Freeview), it's American cheesy but you might find it takes you out of yourself and the situation for a while - works for me! One of the plus sides of my partner having no interest in TV is that TV programs are all my choice - no compromises needed!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
My daughter introduced me to 'Say Yes to the Dress' on Quest (Freeview), it's American cheesy but you might find it takes you out of yourself and the situation for a while - works for me! One of the plus sides of my partner having no interest in TV is that TV programs are all my choice - no compromises needed!
Love that program!
Xx
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
Things came to a head yesterday and I had a visit from the care manager and as a result he has gone to a nearby care home for a week and then reassess. He cuts such a forlorn figure, didn’t resist but accepted trustingly what I said, that I was unwell and needed some help. I wish this was all over for him but it isn’t and not yet imminent even though he looks like death at times lying in bed. He has formidable powers of endurance, more than me who has to guide him through this horror. I am heartbroken but need the respite badly.
 

Sarasa

Registered User
Apr 13, 2018
1,017
Sorry to hear you are unwell. You’ve done an amazing job supporting your husband, but things seem to have moved on so a care home and a reassess sound wise.
Look after you and try and recharge those run down batteries
 

White Rose

Registered User
Nov 4, 2018
420
Things came to a head yesterday and I had a visit from the care manager and as a result he has gone to a nearby care home for a week and then reassess. He cuts such a forlorn figure, didn’t resist but accepted trustingly what I said, that I was unwell and needed some help. I wish this was all over for him but it isn’t and not yet imminent even though he looks like death at times lying in bed. He has formidable powers of endurance, more than me who has to guide him through this horror. I am heartbroken but need the respite badly.
So very sad for you but I hope you can use the week to recharge your batteries, hubby will be well looked after.
 

Duggies-girl

Registered User
Sep 6, 2017
1,823
Sorry it has come to this @Grahamstown but you need the rest. Perhaps it could become permanent because it is no good for you too go on like this.

I have been away with my husband for a few days while my brother looked after dad, we returned tonight to find dad has deteriorated and we are collecting morphine and a syringe driver tomorrow. I knew it was coming but to say that I am shocked is an understatement. I can't seem to take it in at the moment. I am staying at dads now and the hospice nurse will visit tomorrow.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,702
Kent
I`m so sorry it`s come to this @Grahamstown

We hold out and hold out and it takes a crisis to make us realise things have to change.

Look after yourself now and try to get some rest and benefit from this respite.
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
Lovely words everyone, thank you. Today I had an email from the care manager who convinced me to have a week of respite now, telling me that he had eaten his supper, been talking to other residents and gone to ask the staff for his cup of tea at 10 o’clock in the evening, so his body clock is all over the place. He will have a routine in the care home which may help but the true moral of the story is that I should give us both regular respite. The care home I have selected this time needs some freshening up, it’s not the 5* style of last year when they needed clients in the newly opened home but it’s friendly and the staff seem lovely and are part of the same organisation who do his home care, hence realising that I was not good. They are more flexible than the one I used last year and cater mostly for dementia clients so I think that helps. Now he is worse I want different things from last year. I shall visit today and I feel tons better because I went to bed early, had a good nights sleep and shall be able to have lunch with a friend today with no pressure to get back to him.