I'm worried about my Mam and Dad

Becles

Parents went on holiday to Goa. Dad woke up with chest pains one morning and went to get checked out. The little hospital near the resort said it was an angina attack but they'd treat him and keep him in hospital for the day just to make sure he was ok. Later that day he had a massive heart attack and ended up in intensive care.

He had to be transferred to a hospital three hours away for tests where they said he needed a bypass operation but it was too dangerous to fly home so he would have to have it in Goa. Op went ahead and there were no complications and everything seemed fine.

Two days later he suffered a very serious stroke that has left him paralysed down the left side. He wasn’t fit to fly for several more weeks and Mam had to live in the hospital in a non-tourist rough area where not many people spoke English so she found it very hard going.


When he was fit to fly, he was air ambulanced in three flights back to the UK, so that was a very long and stressful day for them. He’s spent several more weeks in a UK hospital where Mam did both visiting sessions each day, meaning she was rushing around doing jobs in the morning and then out the house from 1pm-9pm each day.

He’s been discharged from hospital now but is still paralysed and has no use of his left arm or leg and can’t sit up unaided. They’ve got a hospital bed in the sitting room and a hoist with sling to move him from bed to armchair. He can’t use a commode so he needs to use bed pans.


They have carers going in at 7am, 11.30am, 3pm, 6.30pm and 9pm, but Mam has since dropped the 7am call as she kept getting up just for them to say oh he’s still asleep so we’ll not do anything.

The problem is that Dad doesn’t like the carers helping and thinks my Mam should do everything. He keeps doing things like saying he’s fine on their visits, then ten minutes after they’ve gone, he’s saying he needs to go on the bed pan or he wants to move from his chair to his bed. So the carers are actually doing very little and Mam is doing the bulk of the work. Mam is 62, has spondylosis in her neck and shoulder and is a petite 5’, 9st woman. Dad is a 5’10”, 14 stone man. It doesn’t take a genius to work out that Mam shouldn’t be lifting him onto bedpans etc.

She’s been told not to operate the hoist by herself but incidents happen like yesterday when he said he didn’t need a bedpan to the carers, then asked her for one but she told him to try and wait until the next visit. He soiled himself so she ran Telecare who are supposed to be emergency carers. 45 mins later, they were still waiting for help, he was distressed, the smell in the house was horrific, so she had to hoist him and clean him up.


He also doesn’t like her going out anywhere. At the moment she only gets out once a week for an hour to do her grocery shopping and that’s the highlight of her week! He’s scared in case something happens to her and he has to go into a home. He doesn’t even like her nipping out for small errands like going to the local shop for milk. He also likes her in the sitting room with him and she doesn’t get a rest as if she leaves the room, he’s constantly calling her back for trivial things. She said it’ll take 2 or 3 attempts to make a sandwich for lunch as she’s back and forward all the time. I’ve offered to look after him so she can go out for a cuppa with friends or something, but he makes her feel guilty for going out so she won’t go. I look after him while she goes grocery shopping and he’s always in a bad mood and barely speaks to me, then he worries himself silly and cries when she comes back as he was so worried about her.


I’m helping out as much as I can, but I’m a single parent to three children and I work full time, so I don’t have much spare time to start with!

They don’t qualify for free carers as Dad worked so they have a small occupational pension coming in as well as their state pension. They’ve just been means tested and are waiting to see how much they have to pay towards his care. Mam is frustrated that they’re going to end up paying for people to come in and have a nice chat four times a day because he says nothing needs doing, as he’s making her do all the work.

So issues that I need help with:

How do I get it through to Dad that he needs to let the carers do the caring work that they’re being paid to do? I know it must be awful doing stuff like pooing in front of strangers, I wouldn’t like it, but it’s something he’s going to have to do. I also need him to understand that Mam needs a break and he can’t keep her cooped up in the house all the time.

Is there any other care service that would help? I was thinking like how MacMillan nurses go in for sessions so carers get a day off with cancer patients. Is there anything like that for stroke patients? Or somewhere we can we hire someone to sit with him for say a one day a week just to give her a day off?


At the moment Mam is absolutely knackered and she has pains in her arms and shoulders from all the lifting so she really needs some help in making her day easier.

Sorry it’s so long and thanks for making it to the end!

thorsoak

I'm so sorry to read about the problems your mum and dad have at the moment - its horrible when things like this happen. And you're stuck in the middle, feeling absolutely helpless

You are going to have to talk tough to dad, I'm afraid - I can understand that everyone has been !!!!!footing around him because he has been so ill, but it's time for a bit of "tough talking" to him. Somehow, you have to get through to him that he has to let the carers care for him - he cannot rely upon mum to lift him etc - or she too, will become ill - and then who will look after them?

Look here :- http://www.stroke.org.uk/ - they may be able to help - talk to your doctor/district nurse - and get mum to talk to her doctor - she (and you) need respite care.

I do hope you manage to get the help you need for them.

dandelionclock30

I think your going to have to be firm with him and explain that he has to make more effort regarding working with the carers because your Mum cant do it all. At the rate shes going shes going to get unwell herself.
Also your area adult social work team may be able to help with advice about day centres for him and or respite as well and about carers. Also there may be a carers group locally for your Mum to attend and get some support.
Your Mum absolutley needs to have a life herself and cant be cooped up all day with him.
Ring social services and ask them to come out and do an assessment.
Also I would be discussing with your Mum about what she feels she can and cant do. If he continues to behave so unreasonably though then I think you need to consider all his options.
I think your Mums needs have to be taken into account and if hes not willing or able to be compliant and helpfull then residential care may be the best place for him.
Good luck with it all .

ognum

Becles wrote: »

Parents went on holiday to Goa. Dad woke up with chest pains one morning and went to get checked out. The little hospital near the resort said it was an angina attack but they'd treat him and keep him in hospital for the day just to make sure he was ok. Later that day he had a massive heart attack and ended up in intensive care.

He had to be transferred to a hospital three hours away for tests where they said he needed a bypass operation but it was too dangerous to fly home so he would have to have it in Goa. Op went ahead and there were no complications and everything seemed fine.

Two days later he suffered a very serious stroke that has left him paralysed down the left side. He wasn’t fit to fly for several more weeks and Mam had to live in the hospital in a non-tourist rough area where not many people spoke English so she found it very hard going.


When he was fit to fly, he was air ambulanced in three flights back to the UK, so that was a very long and stressful day for them. He’s spent several more weeks in a UK hospital where Mam did both visiting sessions each day, meaning she was rushing around doing jobs in the morning and then out the house from 1pm-9pm each day.

He’s been discharged from hospital now but is still paralysed and has no use of his left arm or leg and can’t sit up unaided. They’ve got a hospital bed in the sitting room and a hoist with sling to move him from bed to armchair. He can’t use a commode so he needs to use bed pans.


They have carers going in at 7am, 11.30am, 3pm, 6.30pm and 9pm, but Mam has since dropped the 7am call as she kept getting up just for them to say oh he’s still asleep so we’ll not do anything.

The problem is that Dad doesn’t like the carers helping and thinks my Mam should do everything. He keeps doing things like saying he’s fine on their visits, then ten minutes after they’ve gone, he’s saying he needs to go on the bed pan or he wants to move from his chair to his bed. So the carers are actually doing very little and Mam is doing the bulk of the work. Mam is 62, has spondylosis in her neck and shoulder and is a petite 5’, 9st woman. Dad is a 5’10”, 14 stone man. It doesn’t take a genius to work out that Mam shouldn’t be lifting him onto bedpans etc.

She’s been told not to operate the hoist by herself but incidents happen like yesterday when he said he didn’t need a bedpan to the carers, then asked her for one but she told him to try and wait until the next visit. He soiled himself so she ran Telecare who are supposed to be emergency carers. 45 mins later, they were still waiting for help, he was distressed, the smell in the house was horrific, so she had to hoist him and clean him up.


He also doesn’t like her going out anywhere. At the moment she only gets out once a week for an hour to do her grocery shopping and that’s the highlight of her week! He’s scared in case something happens to her and he has to go into a home. He doesn’t even like her nipping out for small errands like going to the local shop for milk. He also likes her in the sitting room with him and she doesn’t get a rest as if she leaves the room, he’s constantly calling her back for trivial things. She said it’ll take 2 or 3 attempts to make a sandwich for lunch as she’s back and forward all the time. I’ve offered to look after him so she can go out for a cuppa with friends or something, but he makes her feel guilty for going out so she won’t go. I look after him while she goes grocery shopping and he’s always in a bad mood and barely speaks to me, then he worries himself silly and cries when she comes back as he was so worried about her.


I’m helping out as much as I can, but I’m a single parent to three children and I work full time, so I don’t have much spare time to start with!

They don’t qualify for free carers as Dad worked so they have a small occupational pension coming in as well as their state pension. They’ve just been means tested and are waiting to see how much they have to pay towards his care. Mam is frustrated that they’re going to end up paying for people to come in and have a nice chat four times a day because he says nothing needs doing, as he’s making her do all the work.

So issues that I need help with:

How do I get it through to Dad that he needs to let the carers do the caring work that they’re being paid to do? I know it must be awful doing stuff like pooing in front of strangers, I wouldn’t like it, but it’s something he’s going to have to do. I also need him to understand that Mam needs a break and he can’t keep her cooped up in the house all the time.

Is there any other care service that would help? I was thinking like how MacMillan nurses go in for sessions so carers get a day off with cancer patients. Is there anything like that for stroke patients? Or somewhere we can we hire someone to sit with him for say a one day a week just to give her a day off?


At the moment Mam is absolutely knackered and she has pains in her arms and shoulders from all the lifting so she really needs some help in making her day easier.

Sorry it’s so long and thanks for making it to the end!

Gosh what a nightmare for you and your parents. I think you Mum needs to establish a routine and your Dad will become used to it so

Morning she makes sure he is awake when the carers arrive and they get him washed and toilette come what may.

the routine should be that he is washed, turned/sat up at each visit.

It is like a child just a question of establishing a routine.

Mum should tell the carers what needs to be done and then leave the room, have a cuppa in another room, have a shower, go and sort out the washing, anything so she isn't standing chatting and wasting their precious time for caring.

Have Mum and dad considered a day centre to get him out of the house and Mum bit of respite.

Maybe Mum would consider doing all the care for 3 weeks and then Dad going into respite for a week a better use of funds or maybe some full time care would be better for them both.

Just to put you right MacMillan nurses do not provide actual care they provide advice it Marie Curie nurse who provide shifts of care for cancer patients.

Tigsteroonie

To echo the suggestion above, get in touch with the local Carers association for ideas/pointers of the additional help that may be available in their area.

carefullycautious

She needs regular respite care or she will be the one who gets taken into hospital/care.

I'm afraid he needs someone who isn't afraid to tell him a few home truths.

Could she talk to someone from headway who deal with this all the time if she can't would you talk with them and explain everything you have written here.

BitterAndTwisted

Oh, your poor mother! It sounds like your father is having trouble adjusting to his new circumstances, which is completely understandable.

Apart from your mother visiting the GP and finding out what other help might be availalble, I think she needs to take a huge step back and make it clear to Dad that the carers are the ones who will be doing all the heavy lifting, toiletting etcetera and that she needs to run the house and deserves to have some time to herself. I'd be minded to leave the house when the carers are there just to press home the point.

If she becomes unwell and unable to cope then he'll likely be on his own, and I'm sure he wouldn't want that to happen. If the tough-talking can't come from your mother perhaps you could attempt to get through to him.

He's being rather selfish but I daresay that may not be his intention, so perhaps he needs to be told in words of one syllable.

System

It sounds like the trauma he's been through with his heart problems and stroke have had a bad psychological effect on him and he is now anxious all the time and clinging to his wife. He possibly doesn't have much else to occupy himself during the day so he sits and thinks about things, and this will make him even more neurotic.

If somebody can help him understand that OP's mum will become ill or injured herself if the situation continues which would mean he might then have to go to a day centre or a home it might make him realise that things can't continue the way they are and he has to give his wife the breaks she needs.

Mojisola

Is home really the best place for him?

With that amount of care needed, I would look seriously at residential care.

Your mother's health and well-being will be affected by trying to cope with him at home.

CH27

You need to point out to your dad that if he makes your mum ill then he will need to go into care.
See if you can make him realise if he accepts the help at home they may cope.
It must have been such a shock to them both & will take a lot of adjusting to.

Is him being at home really the best long term solution?

Becles

Thanks for the helpful suggestions. I'll see if I can have a word with him during her next shopping trip but he stills thinks of me as a little girl so I don't know if he'll take much notice! Will follow up the other suggestions of external people for help and see what we can get from them.

Day clubs sound great but at the minute we can't get him out of the house, as the house isn't adapted for wheelchairs. He has a temporary wheelchair that doesn't have the right support so we have to wedge him in it with pillows, and they don't have ramps to get him outside so it's too dangerous to bump him down the steps. They're not entitled to any help with funding for house adaptations due to the occupational pension so they're trying to work out how to pay for ramps to be put in.

(as a seperate rant, if he'd not worked or not had a pension, the man who came out was willing to put ramps in front and back and convert the garage into a downstairs bedroom with wet room for him. But because he worked and scrimped to put a little bit aside, they're not entitled to any help at whatsoever and don't have the savings or enough income to get a loan to fund adaptations :mad:)

Mam is nervous of leaving the carers alone as sometimes they send people who don't know what they're doing. At the weekend she'd left the room and came back to find they had him in the hoist alongside the bed and one was going to push and swing him over the bed while the other one dropped him down quick :eek: They'd never been shown that the hoist frame gets pushed under the bed, so he's in the sling directly above the bed, then you can lower him gently into bed. Several times she's had to adjust him after they've gone as they've just chucked him into the chair and not made sure his hips and bottom are in the correct position which makes him slowly fall over as he struggles to correct his posture if he's not sitting right, so now she watches and joins in if they're doing it wrong.