Hello, this is my first post on this forum. I am 70 years old and retired. My wife was diagnosed with Parkinson’s one year ago and I am wondering how much medical care she might need going forward and what we should do to prepare for the future. Her condition is not showing much now, thanks to the medications and physio. Ought we to consider living close to family and friends, close to medical facilities, maybe in a bungalow? Or, as this disease can progress very slowly, should we just wait and see what happens, which is what we are currently doing?
Thanks in advance.
Good evening Nev1 … Welcome to the forum. I was also diagnosed with [Atypical] Parkinson’s a year ago. But have had slight symptoms for a while. I am also just turned 70 years old. I take Sinemet 2 pills 3 times a day for my Parkinson’s. My main issues are gait freezing & difficulty walking more than 50 yards. I only have a very slight tremor. I feel tired or fatigued most of the time. I have had trouble sleeping but take medication for it now.
I decided to live in a ground floor flat about 3 years ago, a good move in hindsight.
I live on my own & manage quite well.
But we all have different symptoms & react differently. There are indeed many types of Parkinson’s.
Any questions please ask.
Best wishes
Steve2
Hello again … In answer to your question I think you should both live where you are most happy. If you did plan to move to your retirement home it might be a good idea to bring this date forward. Moving / downsizing is pretty difficult & best to do it when you are both at your best.
I lived in a large house with garden on my own & sold up to travel & see Florida. Downsizing to a one bedroom flat is not easy, but I am pleased I have done it.
A 2/3 bedroom bungalow sounds a good idea.
I have two good hospitals within 20 minutes & my GP’s & Pharmacy close by.
I live near Eastbourne in Sussex. I cannot do supermarket shopping so I order online & have my food delivered once a week.
The only treatment most of us have is medication. We see a Neurologist maybe once a year & Parkinson’s Nurse maybe once every 6 months. Things move very slowly.
Steve2
Hello Nev1,
Note - this is long and probably not what you were expecting please ask if you need any clarification
You are totally understandably asking questions to try and prepare for the future, as indeed many do, but it is actually a very complex question. You are quite right, progression of Parkinson’s is slow in most people. Your wife was diagnosed a year ago which is very little time in Parkinson’s terms so you have time to think and plan. I’m going to play devil’s advocate here just so that you are aware of things you may not have thought of in this way.
First if your wife hadn’t been diagnosed with Parkinson’s, what plans if any were you making for your future. I would suggest you were not thinking in the way you are now. Your wife’s diagnosis has brought into sharp relief the uncertain future she faces but then in a way she and you (and everyone) faces an uncertain future anyway even if she had not had her diagnosis. One of you could have had a heart attack or been run over by the proverbial bus and you would have dealt with the repercussions of that as they evolved, so try to keep a sense of proportion with regard to future proofing.
Having said that the one certainty there is about Parkinson’s is that the condition will progress over time since there is no cure. What is unknown is the speed and nature of that deterioration and another difference is age. I was 52 when diagnosed 14 years ago, I am now 66. I am assuming your wife is of similar age to you - my 14 years post diagnosis added to her age would make her 84. I don’t think I need to spell out the different stages of life we would be at if that were actually the case.
There is also a common tendency once you have a diagnosis like Parkinson’s to seeing everything as part of it but it doesn’t stop the normal ageng process or the ups and downs of life having an impact.
I write in this way so that you can see the bigger picture and make your decisions from every angle. It’s not easy but you can at least start considering options.
I think Steve2 made a very important point when he said you should live where you are hppiest. Commonly people think moving close to family is the best answer and this can work wonderfully well. But all to often sons and daughters are busy with work and bringing up their children that you end up seeing less of them than when they visited proper. It often means you give up yout own social networks and it can be lonely. This may be a good option but discuss fully the expectations you all have and how it might work to have the best chance of success.
Generally speaking single floor living suits most best and most people think bungalows but flats can be an option or even adaption of your present property - you can perhaps create ground floor living downstairs, have a lift to give access upstairs, adapt bathrooms - you may be surprised what can be done to enable you to stay where you are and the Disabled Facility Grant (means tested) is available for adaptations.
Another option is extra supported housing - where you rent or buy a flat in a complex with care staff on site - many local authorities now offer this facility as well as there being open market options but do your homework if buying as it is a niche market. Finally the new care homes may be worth considering, they are often like ⅘ star hotels with care staff on site. They are not cheap but given what they include are better value than may at first appear. you can buy an annuity to cover costs but go to a specialist financial advisor if considering this option.
The unknown factor is of course how your wife’s condition progresses and what help and support you may have in making, timing and implementing decisions. I’m sorry if this raises more questions than it answers but these are big decisions that will affect both of you. You have time on your side at the moment so I suggest for now you start doing some research, have honest discussion with your wife, family etc and so on - the right decision will ultimately come to the fore.
It’s changing the subject entirely but if I would say if there is anything you should do sooner rather than later - if you’ve not already done so - is to put in place Powers of Attorney it can make things much simpler if either of you develop significant cognitive difficulties.
Best wishes
Tot
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Thank you for taking the time to reply, Steve2 and Tot. As you say, not knowing how this condition will progress, how quickly and what to do is tricky. It seems that medication and exercise are all one can do, and we have now started playing table tennis a couple of times a week. In 2021 I suffered heart failure so decided to retire. We had planned to travel, the usual retirement ambition I believe, so I think that we will just get on and do that for the time being and see how we get on. I also think that we will need to discuss what to do as and when the condition worsens, which is not something we have done yet. Thank you for your advice, it has been a great help and comfort.
Best
Nev1
I’m glad you found our replies useful Nev1 and for what it’s worth I think you are doing exactly the right thing, getting on with your lives, keep your wife’s meds and exercise going but start thinking about and discussing what sort of home you see for yourselves in the future and do some research so you know what your options are. That’s exactly what I did it took a couple of years off and on and it’s not set in stone but I have some ideas about where my future might possibly lie. Don’t feel obliged but in you are interested I would be happy to tell you what I did to be reasonably comfortable with my forward planning - at least as much as that is possible. Nor do you have to do this straightaway but if you would like to know a bit more about how and what I did just let me know.
Best wishes
Tot
Hello Tot
Cheekily replying to your reply to Nev. I wonder if you would consider creating a post of what and how you have undertaken to best future plan your future because I think a number of people would be interested.
Thanks Jane
I can do that if you think it would be of interest. Give me day or two to put something together.
Tot
Does this help? Let me know if you’ve any questions.
Future Proofing
People wanting to know how they can future proof their lives comes up quite often on the forum - understandably since Parkinson’s does not have a cure and the condition will progress. I have been asked if I would write about what I have done to future proof my own future so this is the point of this post. I hope it is of interest / help.
First General Points
In my opinion this is not something that can be done quickly, it probably took me 2 or 3 years to reach the point I am now at and even now it’s not set in stone.
Again in my opinion it is necessary to think about this in the broadest of terms - see my reply to Nev 1 above
An important point for me was that I did not and do not want to be a burden on my family and this has implications for what and how I approached my planning. So what did I do?
I live alone in a two bedroom ground floor flat with garden, which sounds ideal but there are steps up to the flat from the road and it is at the top of a steep hill - which gives wonderful views but could could well be problematic at some point. There is a flatter way to reach my flat but it is quite a long way and at some point you have to go up. I have long thought if I couldn’t ‘do’ hill and/or steps I would need to consider moving but otherwise I wanted to stay in my flat for as long as possible.
The first thing to consider then was my flat. I can do noting about the hill or steps but I could set my flat up to best suit my needs. Over time - and not just for future proofing more so I could manage safely in my flat - I converted my bathroom into a wet room, installed a higher w.c. and installed an electronic seat (this has a wash/dry facility), I refitted my kitchen putting in deep drawers which I manage better than cupboards - there are two corner cupboards with carousels and I have no wall units, I have a half step with integral rail outside the back door into the garden.
I have taken up all mats/rugs (trip hazard) except for a large almost room size one in the living room. I have bought a fully adjustable bed, and tilt in space chair. The other thing I did on the basis that I would need some care at some point, was to employ someone before I really neeeded the help. I knew how hard it was to hand over jobs I had always done to someone else; by taking this step early I thought I could get used to someone coming in to do for me. That has proved to be an excellent decision. Karen comes to me for two hours once week, has no set jobs and just does what I want/need each week.
Next if my flat with the changes I have made no longer meets my needs, even with increased care what next? I was initially drawn to extra supported housing. These are flats in a complex with care staff on site. My local authority run two such facilities and consider forward planning applications for conditions like Parkinson’s. So I registered for one of these facilities and have been on their lists a few years. Each year they contact me, ask if my circumstances have changed and if I wish to remain on the register and I get a waiting point. Apart from this seeming like an excellent option for me it also meant that I was off the starting blocks as it were. This would, for me, mean selling up and becoming a tenant.
However I began to wonder if this was in fact the best option. If I sell up my bank account would look very healthy but this would also mean that I would pay full cost for everything and my money would be eroded. I would be unlikely to be in a position to pay back the amount I would be spending and then, if my needs could no longer be met in this facility I would have less capial and therefore less say in where i go next.
So then I began to think about the new style private care homes that are springing up which have an entirely different feel to the homes we are more familiar with. They are more like 4 / 5 star hotels.They are not cheap (but better value than may first appear if you consider what it includes.) but I thought not everyone living in these places can be rich – that’s when i discovered annuities - like an insurance plan. With the sale of my flat i could buy an annuity and it would mean a single move - which is a big attraction.
Present situation
I am nearly 15 years post diagnosis and holding up quite well.
I plan to stay in my flat as long ss I can - which if I am lucky, but probably not likely, will be to the end of my days.
At the moment my preferred option in terms of protecting my money would be to move from my flat into one of the new style care homes which would entail a single move which is quite an attractive pull. However most people in thes homes are 80+ so am not convinced this would be the best immediate move if that was the case sooner rather than later.
I remain on the rregister for extra supported housing - having my own flat with care staff is a major pull but my finances could be hit hard. However if I can stay in my flat for a reasonable amount of time this may be a better option in that if my needs can’t be managed there my finances may be able to get me a reasonsble annuity for somewhere I’d like to live.
Like everyone I don’t know how my Parkinson’s will progress and work will be needed on any of these options as time goes on but I do feel I have an idea of reasonable options that may be available to me and I add to the information I have as things come up. This is not the right time to make decisions. For me it is about just thinking around possible options, gathering information etc so that when decisions are to be made I will be well placed to sort things out with relative ease because of the work I am doing now.
I would add that my family know all about my thinking and have no objections - I think it important others know how my thinking is going and what I want. I have also put powers of attorney in place just in case.
Tor
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Hello Tot and thank you so much for taking your considerable time to reply at length. I (and I suspect others) have found this very useful. Maybe a separate post would bring others more easily to your information as definitely worthy of its own post/topic.
I must also apologise for my late reply as my husband, who has Parkinsons, has been in hospital and life ran away with me. He is thankfully home again, but boy hospital inpatient stays sure impact Parkinson’s but thats another topic.
I admire your systematic approach to considering your future and your independence shines through in your formulations, long may that last.
I think you have been very thorough in your approach. Making home alterations in advance of possible requiring them I think is excellent planning. Not only are you in a clear mind frame when planning them in advance you are also not needing them urgently.
I found your ongoing looking at potential private facilities for the future interesting. Must admit we have not considered that possible future. Planning for us as a couple is different and truthfully we’ve our heads in the sand regarding this.
Bernard, my husband, was formerly diagnosed with Parkinson’s 12 years ago with a 4 year lead up to obtaining diagnosis. We/he has been fortunate to have his Parkinson’s care from kings College Hospital, London and they have so far been exemplary in the care they have given tweaking medication to keep Bernard as well as they can. However the dreaded Sepsis paid a visit 6 years ago and that combined with numerous orthopeadic operations has confined Bernard to being a full time wheelchair user unable to stand or walk.
We have made alterations to our home some made quickly that are now having to be altered again with regard to the bathroom. We have ramps to our front and back door into the garden, provided by our local occupational therapy department. We are lucky in that we have enough room to convert a dining room into a ground floor bedroom. However as time is progressing we are now looking at Bernard not being able to transfer himself into his wheelchair to access the toilet etc so are facing maybe having to have a hoist system installed plus the shower/toilet space isn’t sufficient for this nor for a carer to be in the limited space too.
Of course it is impossible to know what other health stories may impact us.
One other thing I think worthy of mention for those undertaking a kitchen refit are height adjustable units.
In the meantime Tot, I hope you stay well and positive. Regards Jane
Hello Plus1
I’m glad you found what I wrote useful and you’re right there are several future proofing posts spread all over and maybe there is something to be said for bringing them together.
It is true that having a condition does bring concerns to the fore in away you wouldn’t otherwise think to do, If for example you suddenly had a heart attack, stroke or even something like a head injury you would deal with the fall out at the time. The one certainty with Parkinson’s is you will deteriorate, likely to need care but don’t kbow how, when etc but if does bring worries about the best course funding etc
I think you need to keep an open mind about how far you plan ahead and when you do things. Parkinson’s moves slowly in most so there is generally time to plan and sort things out as it becomes clearer what is needed.
For me the main driver is that I don’t want my family to be my carers. Obviously they will be involved but it is important to me that they don’t feel they have to take on the caring role - which will be a battle in itself with the unwritten assumption family will always do this. So I needed to look ahead and make sure they knew my thinkinh and that I could take on any of their concens so that come the time we were off the starting blocks having done some groundwork. I keep an eye on new intiatives but basically feel at the moment I’ve done what can.
As a by the by I have also made a Will, bought and paid for a funrer plan and put in place powers of attorney so everyone knows what I want. The family are happy with it all and it’s a weight off my minf to have got all that sorted.
To be honest my flat could probably serve me well indefinitely with care coming in. The problem is likely to be that I live at the top of a steep hill (gives wonderful views) and there are steps from the road up to my flat. I think it will be time to move if I can’t get down to the village under my own steam - and back again of course. However that’s not for now over 14 years post diagnpsis I can still do the hill, steps and carry my rollator up and down to my flat so I’m not planning to go anywhere soon lol
Tot
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