Hello, I’m new to this site and wish everyone well on their different journeys. My ex husband had a stroke on the 7th January and was discharged from hospital just over a week ago to his home. I’m trying to support my 2 children who are in their early 40’s and late 30’s. Both work full time, one has currently moved in temporarily with my ex and the other comes in after work and school runs every day and he has a care package where carers visit 4 times a day.
So far so good but he is doubly incontinent, can’t get out of bed unaided, his left arm no longer functions and he is so angry all the time. He phones my daughter especially 15 or 20 times a day wanting company or just a cup of tea. The same happens to my son overnight. He refuses to eat anything prepared by his carers, asks my children to cook him various favourite things then has 2 spoonfuls and refuses any more.
No social worker was allocated before his discharge, his hospital notes were sent to the wrong surgery so no one at his own surgery had any clue about his condition.
So many other things have happened in the short time he has been home eg awful diarrhoea, no repeat medication prescriptions, open sores on his backside. The GP won’t visit although a 111 doctor did come out and leave a prescription for his sores.
In short- can anyone please advise who is best to contact so that all the unravelling strings can be pulled together hopefully in one place? My children seem to move from one mini crisis to another at the moment and it is wearing them out. I know it is a transitional time for everyone and my ex must be so confused and upset having had his life turned upside down but they all need help.
Thank you for listening.
@Suec1 hi & welcome to the community. That all sounds like a big jumble to try & unravel.
I would try calling the Stroke Association helpline as they will be able to advise where you can get support.
0303 3033 100
Does he have a stroke consultant or nurse that he is being reviewed by? If so contact them for advice too. You may need Adult Social Services to get involved & perhaps review his care needs & perhaps review if he is in the right place right now as things can’t continue as they are.
The repeat meds should be sorted by his GP & it may be worth contacting PALS to tey & get them to sort the notes going astray etc.
Perhaps your son or daughter can speak to the GP & explain what’s happening & see what they can do to help. They shpuld be able to contact the hospital for details on his condition.
You need to be firm with them all and don’t let them fob you off. If you rely get nowhete then as a last resort his local MP might be able to help.
It may sound cruel but maybe your son & daughter can try some tough love & not answer some of his calls. That’s a difficult one though.
Hope things get sorted soon.
Best wishes
Ann
Thank you for replying so quickly. I’ve passed on your suggestions to my daughter and she is going to try and speak to the doctor again tomorrow.
She was phoned today by someone from the stroke team at the hospital who was following up a questionnaire she had completed on how she was coping now her dad was home. I think the enquirer got more than he bargained for but has promised to follow up on the problems they’re experiencing. Fingers crossed there will be some movement in the right direction soon.
Thank you again.
Hello @Suec1 - Welcome to the community.
Having read your introductory post I am very surprised how things have turned out or not as the case may be.
As I understand it, you are here as a concerned mother trying to find ways to help your children who are currently trying to look after their father who has had a stroke that has left him heavily dependent on others and who seems to be finding it difficult to adapt to his new life.
You seem not involved in the care of your ex-husband but would like to help your children. In order to do so, I feel there may be questions to ask and certainly we need to find out how things have turned out as they have and what can be done to try and address some of the issues.
I am unclear on how your children have ended up looking after their father given they were not living with him at the time of his stroke and given they both have full time jobs and families of their own.
Question 1:
Did the children agree to look after their father or has this been imposed on them?
How do they plan to do this with their other commitments and do they understand the size of the task?
Question 2:
How was the care needs of your husband assessed? Who from the family (carers) was consulted and how was the suitability of the home assessed?
Question 3:
How was the ex (husband) involved in care needs assessment? Did he choose to be discharged to his home and who did he expect would look after him?
Question 4:
Is your ex in control of his communications? How does he communicate with the carers? Is he comfortable with third party carers? Also, if he is angry all the time, how is he managing his anger? Whilst family might be able to tolerate his anger and behaviour, third party carers may not? If your husband is on his own and he is unable to control his behaviour this may create a difficult working environment on top of the difficulties of being heavily physically hampered.
Question 5:
Being double incontinent and having carers 4 x a day is not ideal. Sitting in soiled pads for hours is not comfortable and it is not “healthy”. If he needs help to move how does he turn in bed?
It is likely he would need to be turned and changed more than 4 times a day. This care package may not be right for him - certainly if he is on his own.
Question 6:
Has he been provided with the right equipment e.g. medical bed, hoist, chair to sit out in? Does he get to sit out in a chair?
Question 7:
If he is double incontinent, he surely should have a nurse to check him. His open sores on his backside is not a good sign - he should be cleaned properly, appropriate barrier creams applied, a medical bed and turning to prevent the bed sores has to have been a consideration/requirement when assessing the care needs.
Question 8:
How was he even discharged home? Was he ready? Was the home ready?
Question 9:
Post-discharge, there should have been a home visit from the GP to check his condition and his prescriptions etc. Also the need for a district nurse.
Question 10:
Why is is GP refusing to visit home - the patient is bed bound. This makes no sense.
The GP situation needs to be addressed.
Question 11:
Is this a continuing care package paid for by the NHS? If so the GP likely holds the purse strings and I don’t understand why your ex is not visited at home.
Question 12:
Why is social services not involved?
I would start by going back to the hospital discharge team to understand what they have done and why. Who made the decisions?
As for your ex being demanding - this may be part of the condition of being a stroke survivor and I cannot comment on to what extent he is in control of this element. If he is able to control his anger or his feelings then maybe he would, but how is he to cope with living on his own and being dependent on others who are not there?
I am sorry that you are in this situation and I feel as though there is a need for people to sit down and revisit this whole thing.
Your children must ask questions - you say your daughter filled a questionnaire. Has she been involved in the post-stroke care?
Maybe it is time to sit down and work out what you (the family who is caring) would like to happen and to involve your ex if he has capacity to understand and make decisions.
Find out all the things that need to be in place and start the ball rolling.
I don’t know if this helps but if not I am sure there will be others who will have things to offer. I note also that Ann @Mrs5K has already got you going and I would certainly echo everything she has said.
Wishing you, your children and your ex all the best.
Namaste|
Sounds like the call from the Stroke team was well timed. I hope they manage to resolve some of the issues quickly for you all.
Best wishes
Ann