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And so it goes on...

TNJJ

Registered User
May 7, 2019
1,376
cornwall
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.
That sounds promising!
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
I visited him this afternoon and on discussing his progress it seems he is much like at home, first meal of the day the best and then whatever else you can get him to eat. I tried to point out in the nicest possible way that it’s not a competition to see who can get him to eat, because care staff too hate seeing someone doing this to themselves, especially new young staff and burst with pride reporting that he has eaten. Nothing like making the care giver feel that they can’t look after their loved one properly when you are the expert on your person’s care. They are kind and seem to be carrying out my instructions. He, of course, immediately asked me to take him home but he was tired so I took him to his bed and he started dozing off and I finally left. He will be offered supper but he refused to eat his milkshake and piece of cake. He looked clean and tidy and he was certainly warm enough not to need a sweater. I am very relieved to have a break from looking after the Person I Give Love and Endless Therapy to, i.e. piglet. My piglet just needs me to endlessly wait on him, stay with him and do everything for him and I just can’t do it all the time. We discuss Carer Breakdown all the time but what to do about it if you have little money but more than the State will fund? That is the question.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
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.
I’m so pleased that the hospice care are coming in & so sad for you. ((((((hugs))))
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,055
Kent
I tried to point out in the nicest possible way that it’s not a competition to see who can get him to eat, because care staff too hate seeing someone doing this to themselves, especially new young staff and burst with pride reporting that he has eaten
When it comes to looking after other people`s family, I think carers feel trying to feed them demonstrates their quality of care and a personal achievement.

I also believe people in the later stages of dementia are not willfully refusing food, they just don`t want it.

It`s in our nature to try to nourish seriously ill people and I understand the carers need to feed them but I do think there comes a time when it might be best to consider carers reasons for feeding.
We all know how food can be over facing when we are ill.

There have been so many cases of neglect in care homes, perhaps this is one of the reasons why good care staff may be overzealous.

It doesn`t sound as if you are getting much benefit from your respite @Grahamstown It`s so hard.
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
All that you say is absolutely right @Grannie G , it’s a huge dilemma but fortunately the doctor has said just let him eat what he wants, help if necessary otherwise take it away. I am feeling much better now but guess I am having withdrawal symptoms. It’s not a straightforward exercise this process.
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
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.
I missed your post yesterday and I am so sorry. I hope he is peaceful and comfortable. My thoughts are with you.
 

Duggies-girl

Registered User
Sep 6, 2017
1,848
I missed your post yesterday and I am so sorry. I hope he is peaceful and comfortable. My thoughts are with you.
Thank you @Grahamstown Yes dad is comfortable, he has morphine for pain control, the syringe driver is for later when he gets worse. We have a hospital bed coming next week and carers are being arranged but I will still be here. Once again I had the life scared out of me as it was all so sudden but apparently he could go on for a good while longer once they get his symptoms under control. It's the shock of these things that I find hard. It's all very upsetting but it is never over with so here we go again.

Looking at dad he won't last the weekend but I thought that a year ago after the pneumonia and 2 years ago when he almost starved to death before his diagnosis. The only difference is that I know he will not get any better this time and it will end but it may still take some time. Awful state to be in but he is still happy so we will carry on.

I hope that you are still enjoying the respite, lunch with a friend sounds lovely and so normal. Make the most of it.
 

White Rose

Registered User
Nov 4, 2018
528
IWe discuss Carer Breakdown all the time but what to do about it if you have little money but more than the State will fund? That is the question.
Massive problem and no-one seems to have any answers. Hope you're enjoying your break, though reading your post it seems like you are stressing over your husband, quite understandable.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
All that you say is absolutely right @Grannie G , it’s a huge dilemma but fortunately the doctor has said just let him eat what he wants, help if necessary otherwise take it away. I am feeling much better now but guess I am having withdrawal symptoms. It’s not a straightforward exercise this process.
Dad loved ice cream & clotted cream, & my daughter was horrified when I said I was happy for him to eat it for breakfast , lunch & tea! But hey I thought - enjoyment is now a priority in any food. I still believe this & know I made the right decisions in this at least!

you are amazing @Grahamstown
((((((((((Hugs))))))))))
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
I am not obeying The Selfish Pig’s instructions to NOT do housework, odd jobs that are easier without a piglet to care for and have been washing, taking out lots of rubbish, dealing with other stuff, fielding my son’s messages because he has been away this week. I am nearly done and will visit him en route to my daughters. I am certainly not amazing but thank you @DesperateofDevon I am just one of those selfish pigs looking after my piglet as best I can. I am not a ministering angel or a dutiful person who sacrifices willingly to look after her PWD and although I am a qualified nurse I am not working as one of those either. Like so many of us, I hate what this disease has done to him and by extension to me. I am off this afternoon with my book and my swimming costume. In the meantime I shall be thinking of my TP friends and wishing you all well.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
I am not obeying The Selfish Pig’s instructions to NOT do housework, odd jobs that are easier without a piglet to care for and have been washing, taking out lots of rubbish, dealing with other stuff, fielding my son’s messages because he has been away this week. I am nearly done and will visit him en route to my daughters. I am certainly not amazing but thank you @DesperateofDevon I am just one of those selfish pigs looking after my piglet as best I can. I am not a ministering angel or a dutiful person who sacrifices willingly to look after her PWD and although I am a qualified nurse I am not working as one of those either. Like so many of us, I hate what this disease has done to him and by extension to me. I am off this afternoon with my book and my swimming costume. In the meantime I shall be thinking of my TP friends and wishing you all well.
I still stick by amazing, strength of character, insight fullness etc the list is extensive.
It’s easy to down play by each person with a PWD in their life does in terms of care

enjoy the book & swim
X
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
There is nothing like a minor crisis to get a bit of help. Doctor is really onside and ordered Community Therapy for mobility aids getting out of bed etc. because he got stuck three times before I rescued him and he is a dead weight even though skin and bone. I called 111 yesterday and they were on the ball, finally got an emergency doctor call back and she said I should self refer to the District Nursing Service for pressure sore prevention measures and incontinence advice, so did that this morning. It’s no good waiting until after the event. My daughter came to help yesterday fortunately and today he has stabilised a bit and the carer came.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
There is nothing like a minor crisis to get a bit of help. Doctor is really onside and ordered Community Therapy for mobility aids getting out of bed etc. because he got stuck three times before I rescued him and he is a dead weight even though skin and bone. I called 111 yesterday and they were on the ball, finally got an emergency doctor call back and she said I should self refer to the District Nursing Service for pressure sore prevention measures and incontinence advice, so did that this morning. It’s no good waiting until after the event. My daughter came to help yesterday fortunately and today he has stabilised a bit and the carer came.
Take care of yourself a little with all this going on
Xx
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
I still get caught unawares, like when he lies in bed so weak and he says he would like to go for a little walk with me. He has tea but refused food. He has to get washed shaved dressed, get down the stairs, put on his coat and shoes but just saying that makes me realise the unreality of his wish. I must appreciate the sentiment as a throwback to happier days and get on with the ironing!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
I still get caught unawares, like when he lies in bed so weak and he says he would like to go for a little walk with me. He has tea but refused food. He has to get washed shaved dressed, get down the stairs, put on his coat and shoes but just saying that makes me realise the unreality of his wish. I must appreciate the sentiment as a throwback to happier days and get on with the ironing!
Maybe that’s code for having a cuddle & talking of precious favourite walks?
X
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
I am sure you are right @DesperateofDevon he does crave affection and I do find it difficult even though I have so much compassion for him. I have had a difficult time the past few days because he is virtually bed bound and is frail to go down the stairs either by himself or with only one person. He can weight bear and get to the toilet so that’s a blessing although he has to sit for hours. The care team have agreed that they can continue for the time being but only because he doesn’t yet require two people. The requirements are very strict now, I can do it but they cannot. So we struggle on with great difficulty with toileting, because of lack of food and fluid. Swallowing is difficult and it does get down his airway.The mattress is great and he is so comfortable, the district nurse came to follow up and said I must request a home visit from the doctor and he/she is coming tomorrow. I think this is a covering our backs exercise but since he hasn’t been seen since last April not unjustified. So we are settled down to a new situation that little bit worse.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
I am sure you are right @DesperateofDevon he does crave affection and I do find it difficult even though I have so much compassion for him. I have had a difficult time the past few days because he is virtually bed bound and is frail to go down the stairs either by himself or with only one person. He can weight bear and get to the toilet so that’s a blessing although he has to sit for hours. The care team have agreed that they can continue for the time being but only because he doesn’t yet require two people. The requirements are very strict now, I can do it but they cannot. So we struggle on with great difficulty with toileting, because of lack of food and fluid. Swallowing is difficult and it does get down his airway.The mattress is great and he is so comfortable, the district nurse came to follow up and said I must request a home visit from the doctor and he/she is coming tomorrow. I think this is a covering our backs exercise but since he hasn’t been seen since last April not unjustified. So we are settled down to a new situation that little bit worse.
I hope that the GP visit will be helpful in providing more support as required. It’s a difficult transition time - emotionally & physically draining; hoping you have a good support network
Xxx
 

Grahamstown

Registered User
Jan 12, 2018
1,667
80
East of England
It’s end game now after the doctor saw him. He does have a chest infection with inhaled liquids in his lungs, so it’s antibiotics, keep him comfortable, let him eat and drink what he will and eventually he will slip away quietly as his vital functions gradually shut down. I can’t help feeling that pneumonia would be a release for him because he now has to carry on living this non-life and I have to watch him and it could go on for weeks. The doctor said it should be peaceful, that he should go to respite again in two weeks time, for me not for him. There I have been able to write it down.
 

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