PSP Association
5,571 members7,590 posts

Continuing care question

My mum has recently been awarded continuing care and is in hospital awaiting transfer to a care home. There are not really any vacancies at the moment so she is in hospital even though there is nothing wrong with her (apart from PSP). My dad can no longer cope at home. He had 2 carers coming in 4 times a day but only for very short periods and it is now felt that she needs a higher level of care that only nurses can provide. I think this decision has been made because over the last few months, she has been mostly in hospital. My dad tends to panic and pick up the phone too easily to ring for the paramedics and sometimes hospital is not where she needs to be. It is a huge responsibility for him and he is feeling the strain after 4 years of doing a very difficult caring job brilliantly.

I asked whether she could have continuing care in the home and was told by a social worker that this would not really be an option. I am now thinking about having her at my house as my dad would find the carers too invasive. I have since read that CC can be provided in the home and that the family's wishes have to be considered. My question is whether anyone has had continuing care in the home and if so how much care is provided? My mum is bedbound now, cannot talk and is PEG fed, although she does eat (very little) pureed food and thickened liquids. I cannot bear the thought of her in a home for the little time she has left and we would be able to spend so much more time with her if she was with us.

The problem is I work 3 days a week (mostly from home though), I have 2 children at school and another due in April. So the practical care I would be able to provide would be limited. I could supply love and affection and overseeing her care and be an extra pair of hands but I cannot be caring for her 24 hours a day as I am in and out the house all day.

Does anyone have any experience of what type of package could be provided or do those in the know feel that a care home would be the best place for her to receive the care she needs?



13 Replies

hi a locely lady used ot blog a lto b4 her husband died frm psp las tyear

she lives in nott sand foudn a raeally good car ehome for him but i have forgotten her naem

she has appeard in the PSP NEWSBOOK

SOrry my brain mustbgb seizing up! i hope not!



Her name is maggie

Lol Jill



Hi Cate,

See if you can contact Hannah Daykin. Watch her video on the PSP website and it seems to suggest that they had 24 hour live in care for her Dad before he passed away. I warn you though I bawled my eyes out watching it!! She also has a Facebook page if you are that way inclined!!/daykinpsp?f...

I'm sure she could answer some of your questions

love Kathy xx


hi cafe t well personally i feel that your mother would be better in a care home no matter how much you love your mum with you expecting another child i think it would be to much for you to cope with i know the old saying well you only get one mum but you have a family to look after and its no easy job being a carer to a person with psp you would be at her beck and call for 24 hrs and in time you might even resent this think about it carefully no one could blame you for your mum going into a care home this is just my honest opinion i do not envy you having to make your mind up but what ever you decide it will not stop the bond and love you have for your mother

good luck and god bless you peter jones queensland australia psp sufferer


Hi I would suggest get someone private to come in the morning until lunch time and then in the evening from 5- 8 pm we had done for my dad for the last two years as My dad was in the last stage. My mum was my dads main carer but we employed a carer in the morning shift and evening. This had helped us I hope you get help but all the doctors say is to put in a nursing home. This is which we never did because we were lucky that god sent us help.

Xs take care look after yourself


It's a personal and difficult decision, but I would hope that being in your home, or that of a loved one is preferable. My mum stayed in her own home and had CC which paid for the carers to come in to the house. She would have them come in to get her up, washed, changed, fed etc trhoughout the day. She also had carers come in to either sit with her whilst my mum's husband was out, or they would take her out somewhere. My mum had 3 lots of respite care in a care home to give her husband a complete break but we found that both care homes didn't have the time or the staffing to really understand mum's issues and PSP and I personally felt that she suffered whilst she was away from home. I know that lots of nursing homes are different but the care she got at home from carers was excellent in comparison.

1 like

I have thought to do the same thing . Maybe have somone come in the morning , help with giving breakfast although the Parkinsons nurse has told m no one else should feed John other than me . Commode , and tidy around .

By that I mean sort the mess out after dealing with hoisting and commoding making th bed again and his chair . I normally end up with pillows and cushions all over the place .

In other words I need another me lol ..


Hi Cate

I am in the process of CHC funding in the hope that I can have more care coming in to look after my husband, he is 64. We live with my daughter and two granddaughters, 6 and 8, and while I can I will do my best to keep Tony at home, I dont work, but it is very disruptive to all the family having carers coming in, x2 each visit. Tony is downstairs in his bed, the children are quiet if he is asleep and play upstairs, they dont have friends visiting, they are often disturbed at night when the carers come in as carers tend to talk loudly to Tony. I worry that the children may pass on an illness to him but so may the carers as so many come in. Then there is all the care that you would still feel you need to do and extra laundry etc. It is going to be a hard decision to make but I am sure you will make the right one.

Love Lorri


I just don't know what is for the best. I think the first thing to find out is how much care the CHC fund would provide in the home. I don't think 4 times a day for half an hour would be enough as I am not in the house enough. Thanks again everyone for sharing personal experiences and thoughts. Although it would be hard having her here, it may be harder if she is in a home as I will probably worry more and fitting in visiting everyday is really difficult too.


Dear Cate

sorry I havent been in touch for a while, I see things have moved on - congratulations on your pregnancy and 3rd baby on the way! I will email more later at home as at work now, did you decide what to do? although my mum was awarded CC last year, they have asked to re-assess her, and now she is in a care home the matron says they may say that she has stabilised (she hasnt - she just isnt falling as she is bed bound generally and when she is transferred to wheelchair has constant support from 2 carers). so there is a chance they may want to stop CC .... I am naturally really worried about this. So bear in mind that too. We must talk more. Clara XXXXXXXXXX


hi cafe t well mate i think you have answered your own question \\\ that you will have your mum at home with you \\ good luck and god bless you peter jones queensland australia psp sufferer


Hi cate

Good4 u in taking the prob on board

A social worker came 2 see me and actually suggested I apply for continuing care

IAm not bad,enough for itm yet but there is nothing 2'lose




I am in the middle of CHC assessment and want to keep my husband at home with me .. Let me know how you get on . There are others in her who might be Abele come up with an answer for you


You may also like...