Future-proofing and Help Now?

Hi Forum! It’s been useful to read so many comments. Husband was diagnosed July 23 (although shakes started Jan 23) and is fairly capable of doing most things (except driving) at the moment. However, I’m concerned about the future and my ability to care for him and am soon to speak to my GP about what’s available. My main issue is, as he is so capable now, will it be deemed that he doesn’t need any sort of care package (or, for me, a carer’s package) at the moment, I wonder. I’d like to get things in place in case anything happens to me. (NB we do each of powers of attorney). Added challenge is adult Asperger son, living at home and not able to drive either - and we live in the sticks (although I’m working on them both to make them see we need to live closer to amenities!). Any comments will be most welcome. Thanks Everyone!

Good evening GillianChilds … Welcome to our friendly forum. You don’t say how old you & your husband are or whether either of you work or whether your son works.

I was diagnosed with Atypical Parkinson’s following a positive Datscan about
9 months ago. I may have had slight symptoms for up to 7 years. I am 70 years old now & I only have mobility issues & can still drive [yes, you have to inform the DVLA].

I would strongly suggest that your GP refers you to your local PCN …

Primary Care Networks include groups of general practices working together, and in partnership with community, mental health, social care, pharmacy, hospital and voluntary services in their local area, to offer more personalised, coordinated health and social care to the people living in their area.

I was referred to the excellent local Primary Care Network & they helped me a great deal. Telling me what I might claim for & even arranging a face to face meeting with a GP.

They helped me fill out the various forms for financial help like Attendance allowance.

It seems you want to move home but the two men don’t. Do you want to move away or somewhere local ?

Parkinson’s is very unpredictable, it seems to affect everyone differently. For me everything seems to happen very slowly.

Any questions please ask.

Best wishes

Hello GillianChilds and welcome to the forum. It was good to hear that some of what you have read on the forum has been helpful for you. I see steve2 has replied with some good suggestions which you may wish to follow up.

Concern and worry about the future is a subject that occupies the minds of many whether they be the person with Parkinson’s or someone like yourself, where the ramifications of the diagnosis are felt by you and others. This is entirely understandable and I think your wish to get everything sorted will resonate with a lot of people who read your post. Unfortunately the nature of the condition makes it virtually impossible to do much forward planning and have things in place before they are needed. Parkinson’s progresses slowly in most so there is time to adapt and adjust to change as it is needed. In addition to that you will often hear/read that it is very individual in its impact; there can be 2 or 3 people with what seems on the surface to have similar symptoms but their impact on each can be vastly different and make it look like they have nothing in common at all.

There are a few things you can do to forward plan in the broadest sense of the word, but when you are asking specifically about care, the statutory services will look at the issues your husband is having now and not second guess what his future needs may be. Your husband is entitled to have an assessment of need and you are entitled to have a carer’s assessment in your own right. Most if not all areas will take self referrals (ie you do not have to go via your GP) and the assessments will be carried out by the Adult Care Service at your local council. As you say however, your husband currently manages most things, you may well find they are not able to offer a great deal at present. The carer’s assessment also looks at assessed need but obviously these will look at the impact on your role within the family etc and that is an entirely different thing; again however I have to say that if you are managing without too much difficulty at the moment and are more interested in looking ahead to the future, they are likely to conclude it is too soon to do an assessment until there are some indicators as to what may be needed.

The unknown factor in your circumstances is how your son deals with it all and there may be grounds for some intervention there.

What you can do, are things like setting up Power of Attorney (which you have already done), make a Will, and give some thought as to what you want at end of life. These are things people find very difficult to discuss but they are worth doing because once in place you can then forget about them and get on with living. I set up POAs, my Will and have bought and paid for a funeral plan. My family know what I want and now it’s just a question of keeping it up to date and updating the family as necessary.

The other thing I have done is given some thought to where I might live if staying in my flat becomes untenable and you mentioned your own circumstances may mean you need to look at alternative housing - and I have to say I would agree with you. You may not know how your husband’s condition will progress but progress it will and life living in the sticks may well become very difficult. For me my initial thinking was that if I had to move from my flat, Flexicare seemed to be an ideal move. Flexicare as it is known locally similar schemes have different names but in simple terms it is a complex or building where you have your own self contained flat but there are carers on site. I have been able to get my name on the register on a future planning scheme and basically my name sits on the register, they check each year I wish ro remain on the register and I get a couple of waiting points - my thinking being that I am off the starting block if the time comes when I need to consider a move. Recently however I have come to the conclusion this may not be in my best interests. When I sell up I would move into Flexicare as a tenant but will have a lot of money in the bank as my flat has gone up so much in value. This means that I will be paying full rent and costs and my capital will gradually decrease and I will have no way to replace that capital. If it then transpires that my needs cannot be met by Flexicare I may not have sufficient funds to choose where I go next. So I am currently thinking I may be better moving straight into one of the new style care homes using the money from the sale of my flat to buy an annuity to pay the fees - this being the best way to protect my only asset. Obviously your situation is very different to mine, but the point is you can start looking at what options may be available to you - and there may be more schemes than you thought.

Forward planning with Parkinson’s is limited to a great extent and the advice usually given and what I agree with, is the best way to live with Parkinson’s is to live in the present and make the most of today - today is a once only there are no repeats. As time goes on and things change other options can be brought into play as needed. Don’t spend all your time trying to sort out a future that is unknown at the moment, and make the most of today - and trust you will know when adjustments and help is needed. I am aware this is probably not what you wanted to hear and it is only my opinion but based on what I know of the system and how it works - I would be doing you a disservice to tell you otherwise.

If you’ve made it to the end congratulations - as many of my posts seem to do, it grows as I write and other things come to mind lol.
Best wishes

Hello again, When I wrote my reply it was in my mind that I should mention what I had done and then completely forgot so consider this a sort of PS.
I was very aware how difficult it was to suddenly have a care package put in place for whatever reason - strangers coming into your home and doing things you had always done for yourself and probably not quite how you would do it yourself. So I decided to introduce my own ‘support’ before I needed it so that I could get used to a person coming in to help me. I knew that the statutory services would not be able to help with this so I went ahead and arranged it myself. That was several years ago now and has proved to be an excellent decision. It is true that in the beginning Karen did not feel like she was earning her money, but she was doing exactly what I wanted - we got to know each other, I felt comfortable with her and she always did anything I asked of her. When I left work I gave up my car and she is able to take me to appointments and out and about to places not easily accessible on public transport. I still only have two hours a week, what we do on any week is entirely down to me and what I want or need her to do. I still manage pretty much independently and her role is to finish off jobs I may have started but perhaps am too tired to finish, or she will help me to do something and we work comfortably together and sometimes I will delegate a job to her. It’s a flexibility I wouldn’t get with a commissioned service and to take direct payments means operating a separate bank account - arranging it myself has solved both of these issues and I pay for it out of the PIP I receive, which I believe is a good use of the money…