Time to move - my experience

[Tot]

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.

[Johanmb]

@Tot When we moved from first floor flat to ground floor flat we were told it could up to a year, even after getting adult social care to do an assessment of needs. Just over 7 months from applying we had the keys to new flat, so sometimes things can move faster than they say. Also should point out the the move was to do with my husband illness and not my PD.

[Tot]

Hello Johanmb, I’m just going to go with it one step at a time however fast or slow that may be. Have to try and keep the stress levels in check as we it is well known that moving can be a major source of stress.

Hope your move has proved to be a good one for you and your husband.

Tot

[Mosie]

Hello Tot.

I was diagnosed in 2010. I sold my detached 4 bed house in 2018 and bought a 2 bed flat in a retirement block, because I was finding the house too much to cope with, the move took me closer to some of my family and I wanted to make the move while I was still able to do most of it for myself. Looking back, and having some regrets, my big problem is not knowing how life would be if I had stayed. There is so much about leasehold ownership that I resent. I have to have a door closing mechanism on my front door (fire regs) but getting into the flat with a walker and shopping is a difficult manoeuvre, neighbours get bangs on elbows, heads, knees. We need permission to change baths for walk in showers, and the cost of such permissions is going up. The block is a small one, only 20 flats, this can be friendlier, more mutually supportive, but it also means we can only afford a manager on site 9-1 on Mon - Fri. (Why do lifts always break down early on Friday afternoons?) We have alarm pulls to contact help in such situations but if the response is slow and poor, we have no immediate power to do anything about it.

Sorry if I am whining, but I have to say I did not realise all the implications of the move I made. If I was doing it again, I think I would wait longer and go somewhere where there was better support.

[Tot]

Hello Mosie

Thank you for your comments and I understand exactly where you are coming from because my flat is leasehold so I am familiar with the issues you raised. I am fortunate to have a very roomy flat in a block of only four, in an area I never thought I could afford and I have been here 30 years next month. It is however at the top of a steep hill (worth it for the lovely views) and even before Parkinson’s I used to think if I couldn’t get down the hill on my own that would be the time to move because I could easily become very isolated. I can still do the hill but it is becoming more of an issue. One of the main drivers for me and why it seems right to think of a move now, is that I no longer want the full responsibility of maintaining the flat and keeping all the everyday things going. It uses energy, time and effort which, quite frankly I would rather spend on things I want to do not be bothered by having to arrange the plumber or mop the kitchen floor.

I’m o hoping to move to an extra supported housing scheme where I will have my own front door but care is available on site 24/7. I am under no illusions that this will be perfect but will be a step up from what I’ve got now.

There a are some things that I need to get advice on notably financially as with the sale of my flat I will be a tenant but will be considered self funding, which will eat my money so I need some good advice. I also don’t underestimate the size of the change - moving from a block of four flats to a complex with maybe 50/60 flats and surrounded by many more people all the time and from a village setting (albeit a large village) to one that is situated in the middle of town. However like you, I want to move while I have a choice and be involved in the process. I do not want it to get to the point of having to move because I am effectively in crisis - those sorts of circumstances are often not satisfactory at the first attempt and to be avoided if possible.

It’s early days and a long way off and I am just taking it one day at a time and see where it takes me.

Finally and changing the subject - this very low tech and cheap solution that works for me when you are trying to get things in and out the door. Maybe something similar would work for you. I hope you can follow the photos.

IMG_20260616_203918167|375x500](upload://rDLZUGjHzJwC5WSE8gfc2ZqcL5u.jpeg)

Tot

[Mosie]

Thank you Tot, that looks both simple and brilliant.

[Tot]

You are very welcome and it makes such a difference.
Tot

[Tot]

Time To Move - Post 2

Well the process has started. About a week ago I had a call from Adult Care Services asking some general questions. It was a little stressful because I knew they would need to consider all options, but it seemed to me that she was making heavy weather about putting in support at home and missed the main point of my referral ie the responsibility of owning and maintaining my flat was becoming an issue as was the location of the flat at the top of a steep hill. Also some of my symptoms were beginning to be felt a little more strongly (no surprise that since at the end of the year I will be 17 years post diagnosis and in all probability it started 2-3 years before my diagnosis.) Taken together the most obvious solution was to move to a flexicare scheme and I wanted to get that sorted while I had time on my side and I am able to cope with a move. I didn’t want to leave it until my situation became critical - moving in that sort of circumstance is rarely successful at the first attempt and stress levels can go off the scale. I agreed to speak with anyone she wanted me to speak to but made it clear that my aim was to secure a move.

A few days later different lady from Adult Care Services rang and again I was asked about having support at home. I said no and explained again that I had arranged for two hours help some years ago as this was a cost effective way of managing the day to day running of my flat since I had given up driving after leaving work. Karen had no set jobs and I told her each week what was needed. That might be some housework, finish off or help me do a job, sometimes we just sat and chatted, sometimes we would go out - sometimes planned but I was also able to say I need to get out ‘on the day.’ It was the flexibility she could give that was the single most important aspect of our relationship. If I needed more time for example, I would discuss it with her first. This seemed to satisfy her and we moved on to housing.

She said I would need to contact housing to arrange to be put on their register. I did wonder if anyone had actually read what I had written on my referral because as well as noting the help I had already put in place I had explained about the housing register. To cut a long story short I again explained I had had my name down for flexicare accommodation since 2018, the council policy allowing for some forward planning for flexicare. They simply checked each year if I still wanted to be on the list and if my circumstances were the same and I would have one waiting point added to my total. She didn’t dispute I was on their list but didn’t seem to agree or know, it was specifically for flexicare. I insisted that was so. She said she would check my status with housing and get back to me. She later left me a message and had obviously contacted housing who must have confirmed I was on the list for flexicare as she said the scheme manager would be contacting me on her return from leave this week. I had already been in touch with the scheme manager with a view to visiting to see what it was like and planned to contact her in the next week or so anyway.

I did feel after these calls that they were beginning to see why I was wanting to move. I suspect I was a little unusual in my approach and what I had done to date to sort out any challenges Parkinson’s had thrown up to date and they probably wasn’t used to having someone so pro-active in using the system in the way I was doing. As far as I am concerned however, I am using the flexicare system exactly as it should be used since it was designed for people with conditions such as Parkinson’s. For me it means I can get the next stage sorted while I’ve still got time and there is no immediate rush which will do much to keep the stress levels in check. Still a long way to go but it does feel like they are taking notice of what I want and why and at this early stage, that is good enough for me.

[Tot]

Time to move - Post 3

Well after a minor blip on my referral, I think we must have been speaking on crossed lines, however we are now back on track and ACS are coming to do their assessment tomorrow morning and I will tell you how I found that next time.

In my earlier post I said that I had found a financial advisor who suggested I got the social care and financial assessments sorted first then go back to him with full information. Since that conversation I have been doing some reading around this subject and there is one point that came through loud and clear - annuities paid for the care component only, not the costs of the flat such as electric, gas and so on but that there were other types of ways to cover these costs if necessary. This was an important fact as it meant that when I do go to see an advisor, I am clear about what we were discussing and that in all probability I could be looking at the best way to finance both my care and my housing costs. By using AI I was able to get a general view of what costs may be involved in making a move into flexicare and when I get time I will do some sums to see roughly how much I can cover out of my income and if applicable, how much I would need to spend from my ‘savings.’ That ,may have some bearing on my decision following advice.

Alongside that I made contact with the legal team who managed my lease extension a couple of years ago. They were very efficient, gave the most detailed quote of the work and costs involved (which turned out to be pretty accurate) and they were very approachable. It is nice to go back to a company I know rather than sort one out from scratch. I have not formally signed with them yet - they are waiting for contact from me when I am ready.

Finally I have been in touch with a local estate agent and explained my circumstances. They are coming on Wednesday to value the flat and take photos and will hold them on file until I am ready to put the flat on the market.

You may be wondering why I have set these things up so early, that it seems miles too soon. The answer is simple, by doing this now all are aware of my circumstances and will wait until the time is right. To get it off the starting blocks means I won’t have a load of explaining to do nor will I have to do everything at once or in a very short space of time - all designed to keep stress levels in check and enhancing the feeling that it is not all running away with me. It works for me anyway.

I have also started to give some thought as to what I might take and what I dispose of. Moving from a 2 bed to a one bed and still have room to move I will need to be selective.

Finally I visited the most likely to suit me scheme and as far as I am concerned it is a no brainer it resolves many of the main issues I have here and I believe gives me the best opportunity to maintain my independence for as long as possible - hopefully Adult Care Services will agree. I will write more about that later when I better know where I stand following the Ax.
Tot

[Tot]

Time to move - Post 4

Yesterday I had my care assessment by a member of the Adult Care Services team. The financial assessment is done separately.but I was able to confirm I am currently under the savings limit but the sale of my flat would put me over the limit and I would be self funding.
The assessment lasted about 1hr 40 mins and was more like a relaxed conversation. She did ask questions and these gave a focus to our conversation but mostly she just allowed me the time and space to fully explain why I was looking to move and she agreed with my view.
She wrote loads of notes during the Ax.
The next part I find interesting as to how decisions are made but it is also a bit unnerving as their decision will directly affect me. My assessor will write up her report and recommendations which is then sent to a panel who review all ‘waiting’ cases and decide who has greatest priority; it’s not just a case of waiting until you reach the top of the list. The other unknown is just how long the wait may be. Typically a vacancy will only arise when a tenant moves into full residential care or dies. I’ve been told there are currently 8 wanting to move to BC, I will be the 9th. In theory all 9 of us could be waiting years. In practice it probably isn’t quite like that but it is something to bear in mind.
Given this I may need to consider other options but right now there is no other scheme that will give me back as much independence as BC. I’m not sure at the moment if the other main option would be worth the compromise since in many ways I would be facing many of the same issues that I am here so the upheaval would just not be worth it. I will need to be very careful about how I manage this very possible circumstance since it potentially carries huge implications for my mental well being as if that deteriorates my symptoms will go into orbit which could lead to a permanent decline. To my mind that would be very sad when it has come about by a situation out of my hands.

The other thought that occurred to me later yesterday afternoon, was that I was subconsciously thinking that the other 8 on the list had Parkinson’s like me which may of course be completely wrong and change my ‘position’ in the priority stakes.

To sum up, the assessment was by and large a positive experience and although I was a little anxious at the start, Danielle made me feel comfortable and I was relaxed for the majority of the time she was here. It was a relief to hear her say she agreed with my thinking and that her report would reflect this. However after the assessment had been completed and I was mulling over what had been discussed, it became clear that if I couldn’t secure a flat in BC within a reasonable timescale, the implications for me could be quite serious. It is a sobering thought and may be a scenario that doesn’t happen but on the other hand it could. What I need to do now is concentrate on today and not overthink the many ‘what ifs’ there might be in my bid to move to BC. One step at a time is all I’ve got and what happens next is for somebody else to decide

Just one final word regarding options in case it is not clear. There are other options such as warden assisted and live in carers but I don’t believe any other scheme can match what BC potentially offers and if the other schemes only give me much the same as I have here, the upheaval and cost of moving would at this stage not appear to be worth it.
Tot

[Tot]

Time to move - Post 4

Yesterday I had my care assessment by a member of the Adult Care Services team. The financial assessment is done separately.but I was able to confirm I am currently under the savings limit but the sale of my flat would put me over the limit and I would be self funding.
The assessment lasted about 1hr 40 mins and was more like a relaxed conversation. She did ask questions and these gave a focus to our conversation but mostly she just allowed me the time and space to fully explain why I was looking to move and she agreed with my view.
She wrote loads of notes during the Ax.
The next part I find interesting as to how decisions are made but it is also a bit unnerving as their decision will directly affect me. My assessor will write up her report and recommendations which is then sent to a panel who review all ‘waiting’ cases and decide who has greatest priority; it’s not just a case of waiting until you reach the top of the list. The other unknown is just how long the wait may be. Typically a vacancy will only arise when a tenant moves into full residential care or dies. I’ve been told there are currently 8 wanting to move to BC, I will be the 9th. In theory all 9 of us could be waiting years. In practice it probably isn’t quite like that but it is something to bear in mind.
Given this I may need to consider other options but right now there is no other scheme that will give me back as much independence as BC in my opinion. I’m not sure at the moment if the other main option would be worth the compromise since in many ways I would be facing many of the same issues that I am here so the upheaval would just not be worth it. I will need to be very careful about how I manage this very possible circumstance since it potentially carries huge implications for my mental well being as if that deteriorates my symptoms will go into orbit which could lead to a permanent decline. To my mind that would be very sad when it has come about by a situation out of my hands.

The other thought that occurred to me later yesterday afternoon, was that I was subconsciously thinking that the other 8 on the list had Parkinson’s like me which may of course be completely wrong and change my ‘position’ in the priority stakes.

To sum up, the assessment was by and large a positive experience and although I was a little anxious at the start, Danielle made me feel comfortable and I was relaxed for the majority of the time she was here. It was a relief to hear her say she agreed with my thinking and that her report would reflect this. However after the assessment had been completed and I was mulling over what had been discussed, it became clear that if I couldn’t secure a flat in BC within a reasonable timescale, the implications for me could be quite serious. It is a sobering thought and may be a scenario that doesn’t happen but on the other hand it could. What I need to do now is concentrate on today and not overthink the many ‘what ifs’ there might be in my bid to move to BC. One step at a time is all I’ve got and what happens next is for somebody else to decide

Just one final word regarding options in case it is not clear. There are other options such as warden assisted and live in carers but I don’t believe any other scheme can match what BC potentially offers and if the other schemes only give me much the same as I have here, the upheaval and cost of moving would at this stage not appear to be worth it.
Tot

[LauriePUKModTeam25]

Hi @Tot thank you for sharing all of this. It sounds like a long and emotional process, and you’ve clearly put a lot of thought into what’s right for you. It’s good to hear the assessment itself felt positive and that Danielle listened and understood your reasons for wanting to move. Waiting for the panel’s decision must feel really unsettling, especially when the timescales aren’t clear, and it’s completely understandable that this is weighing on you.

We hope you get some clarity soon, and please keep sharing how you’re getting on. If you need to speak to someone about what’s going on, you can call our free and confidential helpline on: 0808 800 0303. You don’t have to carry all of this alone

The Parkinson’s UK Moderation Team

[Tot]

Thank you for your kind words but at the moment anyway, I’m doing ok. I find that sorting out what I can such as contacting the legal team. and estate agent, makes a huge difference. It means I can explain what is going on and where I am up to. It also means I keep some control of how this early stage runs and clarity about where I am up to with everyone since quite a few people are involved. Included in this was telling my friends early of my plans too.