Continuing Healthcare


#1
My mother has had Parkinson's for about 10 years. Over the last couple of years she has Parkinson's related dementia. My 85 year old father (her main carer) had a fall at home in April of this year and spent 4 months in hospital. As he now is unable to walk and has double incontinence I was advised by Social Services that it would not be practical and cost effective for my father to return to his own home (rented accommodation). Therefore my father is now in a Nursing Home. During this time my mother went into a residential home. She hated every minute of it (and managed to escape twice). Her dementia deteriorated, causing her to be very resentful towards me. She gets extremely anxious, does a lot of crying, is very frightened and has hallucinations and becomes delusional at times. I have utilised my mother's savings and put in place 24-hr live in carers at a cost of £806 per week. Her savings are now extremely diminished as she also has to pay rent and all of the expenses related to running a home. When she came out of the residential home I applied to have her CHC assessed. This came back with 1 high, 3 moderates, 6 lows and 1 no need and was therefore declined funding. I find the whole process really frustrating, espcially as it seems as though because my mother is deemed to be compliant with her care and her needs are more social than primary health care then she does not qualify. One of the low scores was for mobility. My mother is unbelievably unpredictable. Sometimes she can be quite mobile and other times she can hardly put one foot in front of another. I have appealed and asked for a review. Soon my mother's savings will not allow her to afford to stay in her own home (Housing Association) which she and my father have lived in for over 40 years, then she will end up in a residential home and I know she will accuse me of putting her there. Has anyone been in a similar situation and managed to get CHC for 24 hr live-in care. My mother's care times cannot be reduced as she has medication 4 times a day and madopar dispersible when required. Also, she is very unsettled at night and has a tendency to wander when she is mobile enough. I am sure she would fall and probably end up in hospital which will the NHS will be obliged to pay for. Surely, it is better to keep her in an environment she is happy with and with care that will keep her safe. I do not live local to my parents – about 1 hour’s journey, but visit weekly, doing the weekly shop and keeping the carers supplied with money for fresh food and other expenses.

#2
Hi paulinem,
I can fully sympathise with the situation you are in.Over the past number of months i have been in conversation with "Cheshirecat" in this section under the heading"fully funded continuing Healthcare in a nursing home".That explains our story.
In a nutshell,my Mother got Fully funded care,Cheshirecats was withdrawn.I had to appeal also.I went through everything with a fine tooth comb as i could not believe the original decision.As my Mothers case revolved around leaving hospital to transfer to a nursing home.I based everything in the appeal around the medical aspects,in other words,this woman should be in hospital.
The amazing similarity is that my Father is also 85yrs of age and a couple of weeks ago was very ill and had two falls at home.I was more worried for my Dad during this period than my Mum.He's back on his feet now.
With the Azheimers,my Mums understanding is in and out.There are many occassions when she wants to go home and it is so upsetting.But there comes a time when entering a care home is the most logical solution for all concerned.
A lot more people get turned down than get the continuing Health care and all you can do is try your best and don't give up.
Will be thinking of you
All the best
Titan

#3
Thank you Titan. My Dad has surprisingly settled into his Nursing Home without too many questions. I really wonder whether he was just so exhausted looking after my Mum. He has his own room and I recently bought a TV for him so he seems settled, his mental capacity is better than Mum's although he forgets what happens to him on a daily basis. I don't think my Mum would be able to stay in the same Home as Dad due to the fact she is a wanderer and the Home isn't secure. It is only 5 minutes away from my mother's rented accommodation and with the help of her carers she visits him quite often. I worry desperately about Mum (especially when I wake in the middle of the night!!!) I just know she will alienate me when a decision is made for her to be evicted (!) from her home. I really couldn't cope with looking after her myself as she does need 24 hr attention, however, when times are good for her she can be almost the Mum I used to know, and I really do think it is too soon for her to be institutionalised. I will fight her corner, even though she has no idea what I am doing.

#4
I feel for you both. I went through all this. My mother, having been housebound for some 2 years went walkabout in the middle of the night. A wonderful Good Samaritan found her & somehow managed to track me down. My mammy was in hospital for about 6 weeks, was Xferred to a "rehabillitation unit" & from there to a nursing home (which I chose)She was happy enough on the whole, although I do recall a 'phone call at about 11pm on a Sunday from the nursing home saying they couldn't cope with her.
Initially she was awarded continuing care, as she was not expected to live for more than 6 months.She showed 'em & was in the nursing home for more than 3 years. The continuing care came & went. It was reviewed about every 6 months. At one review I was told it was touch & go whether it would continue & the fact that it did for a while was due to her having a stroke. I had to maintain her house during this time (albeit using her savings) Continuing Care was no in place when she died, so the vast majority of the proceeds from the sale of her house went to the nursing home (£860/week)
My mother died Feb 2009, so this is all still a bit raw

#5
annebernadette - it is such a shame that we have to remember our parents in this way. I do sympathise. My issue is trying to keep my mother in her home (housing association). She has never been admitted into a NHS hospital and with the current 24-hr care she is as happy as she is going to be and that is what I am trying to achieve. The only way she will stay at home is with funding from CHC, as I am sure that the local authority (with current cutbacks) will not fund her care at £806 per week. Time and money is running out!! I just feel that I am not going to win the battle as the assessor is convinced she does not qualify for funding.

#6
Hi annebernadette,
Sorry to hear that you have gone through the same and so recent.All you can do is soldier on.Things like this are unfortunately part of life and something many have gone and are going through.Thanks for your support.
All the best
Titan

#7
Hi Pauline, You can read all about my nightmare experience with continuing healthcare under the carers section of this forum .
Donna O'Brien from the Parkinsons UK Campaigns team is asking for anyone who has a relative with parkinsons and experiences of continuing healthcare to get in touch with her. She also has a consultation section further down the forum.
Contact dobrien@parkinsons.org.uk.
Also it is worth contacting your MP, as this is a topic that needs looking at as we are all going to get older and a lot of us with or without Parkinsons are going to need to fund our care in the future.
I am certainly going to raise awareness of this topic, as the last Government did absolutely nothing about it, even though it was constantly in the paper. The Daily Mail had a campaign called dignity for the elderly for years.
Thanks to Titan for your support and Chrissie. Also to Annebernadette who has had to go through the same sort of situation as myself, having funding withdrawn and selling your parents house to pay for their care.

#8
Finally got the continuing healthcare reinstated after a 2 year battle. Unfortunately Mum got it 2 weeks before she died, but I was able to tell her that we had saved her house for her family, which is what she would have wanted. We managed to get the funding backdated and an apology from a representative from the PCT about the way we had been treated, which was not much consolation for putting us through hell.
My advice to anyone, going through an appeals process is to never ever give up, fight for what you think is right, get an advocate if necessary.
Nearly one year after my mothers death I know I was right to do what I had to do, although it was stressful at the time.
Good luck to everyone applying for continuing healthcare and with appeals.