Help need advice

[richmond1]

Mums getting worse needing constant care, dad Is her main carer I do as much as I can I work full time and go to mums 3 nights a week to give dad a break. Dads a very proud man but it is very obvious that's he's struggling even seems to be resenting mum very snappy with her but at the same time he is very protective of her. They have a carer everyday for 1hr and even that was difficult for them to accept.

Dads not in the best of health and I worry that his health needs get forgotten. I want to talk to them about the possibility of mum going into nursing care for both their benefits but really scared of upsetting them but it heartbreaking to see them both struggling. Mum feels very guilty about how dependent she is on us I have tried to reassure her.

I hate psp with a passion it's beyond cruel 😪😪😪

[Robbo1]

You are so right! I am caring for my husband, I love him to bits , but I do get irritated with him and. feel dreadful afterwards. Your Dad is struggling with this terrible situation. Your parents are very blessed to have you. Have you been in touch with social services, as your father is entitled to a carer's assessment? Ask his doctor to arrange for one if it hasn't already taken place. A few days respite may pave the way for longer term care. Good luck.X

[Heady]

Hi, sounds as if your Dad needs more support from Carers. Is he getting CHC funding, if you are in the UK? Certainly try and get their hours increased. I agree with Robbo, also try and get your Mum into a home for a weeks respite, to give your Dad a rest. Unfortunately, we all get snappy with our loved ones, it's part of the problem with the disease, there is no let up, if one symptom is not giving a problem, another will be! It's wonderful that you can support your parents like you are. If you are concerned about your father's health, I'm afraid, you are going to have to spill the beans to his doctor. If he is anything like me, he won't even be aware of his needs, much less know if his body is behaving!

Join the club, we all hate this damn disease with a vengeance, who ever invented it, was certainly having a bad hair day!!!

Lots of love

Heady

[DottieDora]

We had to make this decision in March this year. Mum is small and could no longer cope with lugging Dad on and off the toilet and in and out of chairs/bed, Evan with our support and carers twice a day. Mum was beyond exhausted. We hate that we have had to do this but comfort ourselves that Dad has round the clock care and our visits focus more on quality time rather than chores. We spend as much time there as possible and Dad gets 2 to 3 visitors everyday. Mum stays from 11 till 6 and feeds him his meals. I work full time but usually go about 7.30 and wash him and tuck him in to bed which is a great comfort. Maybe you could tell your Dad all this and explain that the quantity of care would improve while giving him time to enjoy with your mum. Your Dad needs some time for himself too. X

[richmond1 in reply to DottieDora]

Thankyou it's so comforting to know that we're not alone other people are going through the same, it's a really hard conversation to have but I know it's for the best

[Amilazy]

Even with all the carers, Marie Curie Nurses, District nurses I reached a point where I could no longer look after my wife. I probably would have been able to continue if I could have got some respite weeks but there was none available. I was snapping at M, at family friends and carers, I was no longer able to think logically due to sleep deprivation, general run down and constant alertness I was exhausted and on edge of a mental breakdown. I was lucky to find a nursing home close by, which a place for my wife became available fairly quickly. I hated transferring M and it has taken 8 weeks to get a semblance of normal life. I visit her daily for up to 6 hrs take her out feed her but I can hand over responsibility for her night care to the lovely staff whom M has begun to respond to.

What I am saying is your dad must get help before he breaks down and the professionals have to step in to look after both of them which is not a good situation. He needs to be aware that he needs to ask for help this is not an easy decision or he will not be there long to look after his wife.

It is not an easy road it is hard and tough decisions need to be made by him not just for his wife but his own health.

Good luck and best wishes. Tim

[Robmatlol]

Hi Richmond,

It is an awful struggle and terrible for all concerned. Like you, I was spending a couple of nights with my mum so dad could get some sleep. It totally wore me out not sleeping for 2 nights so my 86 yr old dad must be exhausted. After a long struggle mum was granted CHC. Dad now gets night carers in 4 nights a week to sit with mum who never sleeps.

Try to push for as much help and relief and unfortunately 'push' is the ultimate word.

Good luck.

[Doglinton]

One of the secret effects of these conditions is how caring 24/7 affects us. Tiredness, added to uncertainty and fear mean we are super stressed. So we all get cross and resentful and guilty. I can't believe how mean I feel towards my dear husband at times. I hate the feelings that rise and don't like me. I guess he also has similar resentments at his weakness.

Its really testing. I can only say that talking to a counsellor helped me with these bad feelings.

Love, Jean x

[abirke]

It's time to get dad to a dr maybe a senior counselor to help him with the awful decision of a nursing home. Is there such a place which is independent living with the nursing home in the next wing over? Perhaps they could move into an apt. that has more care and more urgent care just down the hall. Does she need full care? or does she have soem independence ie bathroom hygiene?

nursing care may be more flexible than we think...

AVB