Hello All
Background
When living with Parkinson’s one of the issues that comes up quite often is planning ahead, especially when thinking about housing options when faced with an unknown future. People will often say no-one knows what the future will bring, which is true enough and if you had a stroke or car accident for example, you would just get on with dealing with any fallout that caused. The difference is of course, we know we will deteriorate over time so it feels like you should plan ahead. My own view is that when it comes to housing options (which is the focus of this post) I think it is often best to wait until Parkinson’s starts to show his hand and that is the point I am at now. I thought it may be of interest to some of you if I documented my own experience as I go through the process. Please bear in mind that I can only tell you my story from my perspective and it may be entirely different for you.
Step 1 - The Decision
A few years after my diagnosis I did put my name down with the local council for extra supported housing, known as flexicare round here, as they supported preplanning for certain conditions. Every year they would contact me to see if my circumstances had changed and if I wanted to stay on the register and that was it. Over the years I did from time to time think about some possible options and more particularly, financially - whatever I did would mean my selling my flat and I would be considered self funding until my money dropped to a certain level. So I did a bit of basic research. I found out that many people self funded through an annuity, a type of insurance policy, but that there are different types. I found out that some thought you got better returns by investing the money in stocks and shares, but that carries risks and I found out there were specialist advisors in this field and they are registered with the Society of Later Life Advisors (SOLLA). There is also Moneyhelper a government backed initiative where impartial advice on care planning and finding specialist support can be found. It is clearly a complex ares and I knew I would need proper financial advice at some point.
I was diagnosed in 2009 and almost 17 years on, although I am still holding up well all things being considered things were changing a bit. Notably I was finding over the past year or so that I didn’t want the full responsibility of owning and maintaining my own flat. It took energy and effort which quite frankly, I would rather spend on other things, doing what I wanted to do for as long as I was able. I also live at the top of a steep hill and have always thought, even pre Parkinson’s, that it I couldn’t get down to the village of my own accord that would be the time to move; it would be easy for me to become very isolated. I can still manage the hill but it is getting harder and there are also steps from the street up to the flats, which I can still manage but nevertheless and another potential risk factor which could become a bigger issue in time. Linked to that is that whilst there are quite good transport links, most of the time it is not possible to access facilities, events, visiting people or places outside the area etc directly and it adds to the day by having to travel to a nearby town before being able to start your journey or activity proper. In addition the range of my symptoms is growing, some have deteriorated a bit and new ones are emerging. Taken together these are beginning to cause me some stress which is obviously not helping. I needed to find a way to at least reduce some of the stress making factors and that all pointed to moving from my flat.
After giving it some thought I came up with two important points. First that the best option to try first would be the extra supported living, flexicare, as this would give me my own flat in which I would live independently but where there is care available on site. Second that I would need to get some specialist financial advice but I shouldn’t be overly concerned about it. Whatever you may think of the system and I think it may well change in the future, most of what I have will go on my care in one way or another and I shouldn’t waste a lot of energy worrying about it. What will be will be.
Initial Actions.
I have contacted a few local specialists financial advisors all of whom offered a free no obligation initial telephone conversations which has proved useful. They all advised I refer for an adult care and financial assessment first so that it would be clear where I stood with the County Council and what their input would be if any. I could then go back to the financial advisor with full information to enable them to then advise me of options for paying for my care. This seemed sensible to me and I submitted a request for a care assessment yesterday. I am also in the process of arranging visits to the two main schemes in the area.
Nothing is going to happen fast. The local district council how administer the housing lists are currently taking about five months to process applications but that’s ok. I’ve got time on my side and I will take it one step at a time. I will add to this as and when another step presents itself. Hopefully this will be of interest to some of you and please feel free to ask questions if you wish.