Isabelle – Interview 42

Isabelle’s mother who had had PD for 12 years came to live with her in 2002. It was not always easy to care for her and for her own young children. After an admission to hospital they agreed to move her to a nearby nursing home. This has worked well for all of them.

Isabelle’s mother was a state enrolled nurse who was 60 when she first developed PD. At first she lived independently but when it was no longer practical for her to live independently in her own house she moved to a flat in order to be near to one of her sons. When her son died in 2002 Isabelle who had been living in the Netherlands moved back to England with her young family and took her mother to live with her. They converted a ground floor room to a sleeping and living room with it’s own toilet facilities. Both Isabelle and her husband had full time jobs and they had to arrange for carers to some in and check on her mother during the day. They found that carers from the council were unpredictable so that her mother might not be washed and dressed till mid-day. There was always concern about falls occurring while there was no-one in the house. Although her mother had an alarm system on one occasion when she had a fall her message was misinterpreted and she lay for 5 hours unattended. After another fall when she was admitted in a very poor state to hospital they were advised to consider finding a nursing home where she could have 24 hour nursing care. They were fortunate in finding one close to their home which provided care which met their very rigorous expectations.

Isabelle is much happier now that the care her mother is getting ensures her getting the appropriate nursing attention but also provides her with a social environment which keeps her happy and occupied. Isabelle is able to visit her at least twice a week and she enjoys her visits to the family home.

She is impressed by the fact that the extent to which her disability is obvious depends very much on her mood so that when she has been engaged in an interesting encounter her walking and general demeanor change. When one of her grandchildren was unwell she suddenly became concerned just as she would have been in the days when she had been a nurse. For her grandchildren, having her in the house meant that they had to share their mother with their grandmother. Now that seeing her is more of a special event they enjoy her company as she obviously enjoys theirs.

Making the decision to allow her mother to go into a nursing home was difficult for Isabelle but she feels confident that it was the right decision for all of them.

Isabelle remembers how impressed she was by her mothers reaction to her daughters illness.

Age at interview 60

Gender Female

Age at diagnosis 44

My mum rang me every day from the nursing home, How is she?What’s going on?’And asked me what was her symptoms.She went from being seventy eight with Parkinson’s and not really and most of us not really thinking anything and then saying, Well, what are her symptoms?What are they saying?What medication is she onAnd it was almost like it revived all her information and news that she knew about everything.VeryI think I said to her the other day that,Jack had to do something,having extra lessons of, you know, something to do with potential dyslexia or border line.Oh, and what is he doing and how is he doing that

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Isabelle understood why her mother would sometimes freeze in doorways and describes how she would…

Age at interview 60

Gender Female

Age at diagnosis 44

You know when things are going wrong when they haven’t taken their tablet on time,the on and off moments and why the freezing occurs because you live with it all the time, you know what to say.Left foot, lift yourSo that and then, it’s the thought, the hearing of the thought process and then they’ll move the left foot, right foot and then you can start the moving.You know going through a door or changing from a type offlooring with a line is always an issue withfor Parkinson’s patients.

They can’t change, move over a line so if there’s fabric,so if you’ve got carpet and then you’ve got wood even if it’s all completely level something in the braintriggers it and it’s very it’s like overstepping something and it just cannot correlate that it’s all the same level and that’s when those moments of freezing occur.

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Isabelle had to be a daughter, a mother and a carer.

Age at interview 60

Gender Female

Age at diagnosis 44

And it’s kind of role reversal, you know, it’s like, you know, she says to me, You’ve got three children in this house.You’ve got the two children and meAnd I said, Yes, but then you’re my eldest And I said, And if I have to do it for them and if you’re sickAnd she’s been ill and sometimes she’s had an accident in the bed and, yes, at two oclock.The worst times are between two and four oclock and everyone says that they say, Whenever you’re ill that’s the hardest timesBut we got to a point where we wouldn’t spend any time together. If we went out somewhere the whole if we went out as a family, and my mum came with us I would sit in the back of the car with the children.My husband would drive, mum would be at the front because it’s easier getting in and out of the front.Fine, we’d go somewhere and I expect other people with Parkinson’s would know that the worst things are, Oh, I need to go to the toilet nowSo you’ve just taken the two children, then you’ve got to find the disabled toilet, disabled toilets are not always clean and tidy.

And you part of you sort of think to yourself, You know, why isn’t that clean and tidy because this is my parent I’m taking here And then you might just get her back in the wheelchair again and you push her off and you’d go saying, Actually, I need to go againOh, you have to try and remember it’s like having and it really is like having a toddler, toilet training somebody.

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Some but not all of the costs of care were covered by allowances.

Age at interview 60

Gender Female

Age at diagnosis 44

There’s a nursing allowance of eighty pound a week or something that goes straight to the nursing home.She has her disability allowance.High rated mobility, disability and her pension, single person’s pension but I honestly tell you I mean her nursing home fees are three thousand pound a month.And her mobility allowance is what five hundred pound, her pension for a single person is seventy pound a week.I’m I mean with her with her IFA I mean I estimate she will spend twenty five to thirty thousand pound in nursing care a year.

And if you get to the point when you actually run out of her money would it then be possible?

Well, this nursing home part of the parcel was I had to produce evidence that she had income to support her life there.What actually happens is and I asked the question when it starts to run out when you get to the threshold, then they apply to the council to so to pay. She won’t be moved out of her room and that is and that applies to all nursing homes.But I think all nursing homes have to go through that process.You have to show you have some money.I think they also, sounds funny, there must be a life expectancy number of years you can expect to have somebody there.

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Isabelles mothers signature had changed so much the bank would not accept it.

Age at interview 60

Gender Female

Age at diagnosis 44

She managed her own bank account. One day, I think she wrote a cheque out as we did in those days and the bank sent it back because they couldn’t recognise the signature and it’s little things like that that the patient or the individual and the carer’s are not aware of so we had to go to the bank and, these are the new signatures. And she had to rewrite them because her writing had deteriorated. From a script and the lady who would just write flowingly in lovely, you know, copperplate writing to something that probably a toddler would do now but hardly recognisable, indecipherable. The other thing we noticed was a pen like this with a very fine tip was very useful for.

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