Living alone with PD

I understand that about 12% of the UK population currently live alone; the number of single person households is apparently highest in those over 45 and the number of people living alone is expected to continue to increase over the next decade or so. This, of course, coincides with an expected increase in the number of people living with Parkinson’s.

It interests me because I live alone with Parkinson’s and I find it hard to access advice specific to my situation and yet if the number of people living alone with Parkinson’s mirrors the statistics for society in general, and I don’t see why it wouldn’t, there are quite a few of us out there and we are an increasing population.

When I was diagnosed, the consultant asked me who I lived with; when I explained that I lived alone there was a moment of silence and then he moved swiftly on from any discussion of my home situation without comment. There were two chairs in his room, one for me and one for the person I had brought along for support I guess. The empty chair that I sat next to throughout the consultation has stayed in my mind ever since.

This pandemic has highlighted many things for many people and while I consider myself to be in a relatively fortunate position at the moment all things considered, for me it has really highlighted the difficulties faced by people living with long-term health conditions and their families and friends as well as the almost total lack of acknowledgement of the numbers of single people who fall within this category.

Any number of conferences and meetings I attend stress the importance of having a strong support network and quite rightly, the role of partners and family members who support a great many people living with Parkinson’s Disease is highlighted, but what about those of us who live alone?

As a result of the current situation, I’ve been addressing my future in a way that I have not done so before but I struggle to find any information as to how single people with Parkinson’s access support and services as the condition progresses. Of course there are definitely issues all round in terms of accessing support services and many couples are struggling but I feel like a particularly inconvenient truth at a time of constant cuts in terms of health and social care because the reality is that I don’t have anybody in my life who is going to pick up the role of ‘carer’ and I’m just wondering how I find advice for somebody in my position regarding planning for the future?

I’m in a very similar situation, and my first consultant was thrown by me appearing at our first meeting on my own. And with my PD nurse being redeployed because of Covid-19, I haven’t seen another person since March 17th.

There does seem to be more support for sufferers with family, than for people with PD who are on their own, in some cases we are quite literally ‘on our own’.

Thank you for replying to my post. I have been out to exercise and have met people at distance and I am still finding spending so much time on my own challenging but
being so completely on your own for so long must be incredibly hard. Will you be able to get out at all soon or are you totally shielding?
The specialist nurse that I see has just come back from redeployment for 2 days a week and is available through phone contact so hopefully yours will be back soon. It’s too tricky trying to discuss medication issues with my GP because although he is nice, his knowledge of Parkinson’s medication is zilch. If I ever lose specialist nurse support I have no idea what I will do.
I can also feel very much on my own with Parkinson’s and I often feel embarrassed to admit that I am alone because of the constant expectation that all those living with Parkinson’s have partners or live with family members.
I can’t find any information anywhere that addresses issues relating to living alone with Parkinson’s (being alone with Parkinson’s) in any meaningful way and yet I know there are quite a lot of us out there.
Take care and I hope you at least get specialist nurse support back soon.
Jx

Thankyou

I’m physically unable to go out, and I’ve got to shield until the end of July (at the earliest).

The only contact I will have will be a phone call in 3 weeks time, from yet another consultant I’ve been passed on to.

I live alone, but I have now sold my house and bought a flat in a retirement block. A few years back I thought I would never live in ‘a place like that’ but I have the ability to shut the door and be private when I want, and when I want company neighbours are somehow nearer here than in a house in a street. So I have social support.
Planning for the rest of it is impossible because it all depends on the priorities of the next, or next but one government. I was diagnosed in 2010. I am careful with my diet, I exercise, I am doing well, but there is a brick wall rising somewhere in front of me and there is very little I can do about it.

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Hi both,

It’s true, we can do what we can do while we can but ultimately, there are aspects of this condition that we won’t be able to control. With Age UK estimating that at least 1.5 million people over the age of 65 have unmet care needs alongside a health service which doesn’t prioritise providing care for people living with incurable, long-term health conditions, the future is scary so maybe I will go back to not thinking about it.

Being passed from faceless consultant to faceless consultant and being left with no support at a time of great need is a sad statement about the times we live in and I’m really sorry to hear that this is the position you find yourself in.

Like everybody else, I do whatever I can to help myself and I don’t expect an unreasonable amount of appointments but I do need medical backup because I’m not an expert in medication management and what matters to me is having a human point of contact who knows a lot about Parkinson’s Disease, makes the time to read my records before an appointment and makes time at appointments to listen to me and discuss my personal situation in order to tailor treatments accordingly; in other words, reasonable access to a specialist nurse.

I wish you good luck in your move Mosie. It sounds really positive and I hope that the inevitable brick wall remains in the distance for as long as possible; I suppose I think of it as a mountain that just keeps on getting steeper in spite of my efforts to climb it, though I suppose there are still some nice views on the way up at the moment so I will focus on making the best of those while I can.

Take care, J x

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Hello Jackson interesting topic you raise as always and you make valid points. I started to write a post but scrapped it because it was too complicated when for me it is actually simple. I don’t want Parkinson’s to rule my life, I just want to get on with my life. I plan ahead only for that which helps me do this and that done I get on with living in the present - today won’t come again - and let the future take care of itself.
Re the issue of getting advice, good advice, I believe absolutely that is essential because information is power and you are right it’s not always easily come by but we have an excellent help desk and that would always be top of my list if struggling. It would get me off the starting blocks and will often have a snowball effect.
The questions you raise are too big for me all in one go. I take a more micro approach ie what is impacting on me now and what do I do about it, I can manage that. I know others will see it differently but it works for me. I also have to acknowledge that I have a stable medical intervention having the same consultant from the beginning and specialist nurse since her appointment some 18 months later and I do know many do not have that.
I’m not sure if this is of any help at all or indeed adds anything of value to this discussion. I’m not even sure it makes sense to anyone else but no matter it’s kept me going for over ten years and will hopefully keep me going for another 10…20…???

Hi @Jackson and everyone else for sharing your thoughts and experiences in living alone with Parkinson’s. We have a short article from the tips section of our magazine here and we also have our Living Alone with Parkinson’s factsheet here which gives more in depth advice.

The isolating effects of lockdown can be more difficult to cope with if you live on your own, or if your usual social and support networks are more difficult to access.

As part of our response to Covid-19 we’ve introduced our Wellbeing Check-in service where you can receive a callback from one of our Parkinson’s UK advisers for a further chat and practical advice.

Remember, we also have our Parkinson’s UK helpline (including Nurse advisers) and Local Adviser service that can also offer emotional and practical support too.

Warm regards,
David
Forum moderation team

Thank you for replying to my midnight ponderings :-).

Your post makes total sense Tot and realistically, your approach is the only way forward but ironically, it’s the constant mention of carers on every advice sheet that I read and the emphasis on the necessity of family and friends in the provision of care for people with Parkinson’s on PUK’s website that stresses me out about this :-S

In all honesty, having had the bad luck to be diagnosed with Parkinson’s Disease 8 years ago, I have been pretty lucky so far as I have experienced very slow disease progression. Medical care has been ok though I’ve no idea what a multidisciplinary team looks like and I’ve been transferred across to a consultant who is very overworked and possibly doesn’t even know that I am on his list. My GP is nice enough but would be led by me about medication management and even though I can be horribly opinionated, I’m clearly not qualified to decide what medication I need, but at least I still have access to a brilliant Parkinson’s Specialist Nurse (at the moment).

I know, however, that this disease will progress and I would be lying if I said that this doesn’t worry me but equally, I know that there is no point in following the signposts on the advice sheet or pestering the helpline about this at this point in time because I don’t need additional support right now.

I suppose my fear is that future health and social care for people living with degenerative, chronic conditions is going to be based around ‘community care’ which in reality will mean hoping that you have a relative or spouse who will look after you. As you and Mosie quite rightly point out however, this is an unknown which is totally out of our control so there is very little to be done about planning for the future and little to be gained in worrying about it. I really could just go round and round and round :-S

I suppose that I would just like to see more acknowledgement that people do live alone with Parkinson’s and that for those not in this situation, not all partners/ families/ friends are able to offer long-term care and support anyway for any number of reasons. It worries me that care provision seems to be based so heavily on a support system which may or may not be in place and may or may not be working well if it is.

Anyway, thank you again for the very wise advice :blush:.

Take care. Jx

Oh Jackson I do love your posts. Always make interesting points and always make me think, and you certainly bring things to my attention that I wouldn’t otherwise see but sometimes I think I should tell you to stop reading when all it does, it seems to me, is make you worry more.

I agree that there is something of an assumption (?bias) that everyone has a ready made care resource whatever that may be usually family and friends, and therefore that’s all sorted then. Not only is little attention paid to those who don’t in any meaningful way but no notice is taken of people like me who want family and friends to be family and friends not carers -which by the way is not a term I like as the best of a bad bunch I prefer support but that’s a whole new debate.

To return to the original point, that’s not to say family and friends wouldn’t help rather I don’t want them to have to or it be assumed they will. It is not an easy point to make but is important to me so I do what I can. Going to routine PD appointments on my own is one way I use to make sure I am the one they speak to and I am matter of fact over my living arrangements - I have noticed many tend to be a bit apologetic as if by living alone they don’t fit the system and no-one really knows what to do with you and that is where I believe the real problem lies. Leaving aside the issue of budgets as there will never be enough money to provide everybody with everything, it does seem to be the case that however willing and able your allocated worker may be, ultimately people are fitted to the service not the service fitted to the service user.

You are quite right to highlight the issues you do, there should be debate and recognition that, in this case, there are growing numbers of people with PD and other conditions, who live alone. I do however think for the individual the big overall issues have to be considered in the here and now, and having the best quality of life you can today. How you do this is of course the big question.

For me the most important thing was to make things as easy for my family as I could so to that end I put in place power of attorney for health and property, I wrote my Will, I set up and paid for arrangements for my funeral and finally put my name on the register for extra supported living so that should this be needed I would already have started the process. These may be things that many do not like to think about but they were practical things I could put in place to ease any future decisions for them. Over and above that I long ago accepted that any money I do have would go on my care. Whatever my views on that won’t alter that fact and which with the pandemic and the huge financial costs incurred, I see as even more a certainty than before. So I have to have belief, trust, faith call it what you will, that social care services at the time I need them may not be perfect, but will treat me with dignity and respect as the individual that I am. If I didn’t think that there would be little point to today. Having sorted out as best I can my thinking and view of my future living with a chronic condition that will deteriorate over time, I set it aside to live in the present. I am interested in the issues you raise, appreciate they need to be debated, acknowledge their may be implications for me but always balance this by recognising the actual future for me is not known and just as there might be implications for me, equally there may not. It may not always be so but for now anyway I am at peace about my future so I can live in the present.

I don’t know Jackson, how you square your future with all the questions you raise that just seems to cause you more worry, but I hope you find a way to some sort of peace - your way would exhaust me that’s for sure. Sorry I have gone on a bit as usual, it’s the price you pay when I go into philosophical mode!!!

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Hi Tot,

:slight_smile: Thank you for your kind words and for taking the time to read my posts; and an even bigger thank you for your thoughtful and considered reply. As always, you make very valid points and I pretty much agree with everything you say, including the bit where I tend to follow trains of thought down never-ending rabbit holes.

On a practical level, I am currently in the process of putting the practicalities that you mention in place. The current situation has made me realise that I need to have things in order.

I definitely agree that there are many issues in relation to assumptions about family/friends acting as carers that need discussion and consideration and I also dislike the term carer unless it is applied to somebody whose paid role is to provide care, but as you say, that opens up a whole new load of issues to pursue :-S.

I feel that in life in general, there is a need to question things that we don’t agree with and equally, there is a need to accept what we cannot change in order to make the best of the situations we are in and live the life we have to the best of our ability. Getting the balance between the two positions right is tricky and I definitely overbalance in terms of banging my head against the seemingly never-ending supply of brick walls that are an inevitable part of life, but I’m working on it :grimacing:.

Hoping that you are well and everything is as ok as it can be. Jx

Actually Jackson things are more ok than they have been in a year. The last six months of 2019 saw me with two separate 2 week hospital admissions, one three week period of rehab, one emergency surgery and the time in between just getting my energy back. Felt good going into the new year, then one week in my flat was flooded by my neighbour’s washing machine, I had to move out first to a hotel for several days then a rented flat on a 6 month lease. Had been here a month when the lockdown started and all works stopped except the driers drying out my flat which took 3 weeks. A couple of weeks ago work restarted and just heard yesterday that work will be completed by end of 2nd week in July and will be moving back to my own flat towards the end of the month. Never known a period like it but survived still standing and hoping the rest of 2020 has no more dramas in store. So I can honestly say at the moment life is good, I am well and have survived all that’s been thrown at me more or less in one piece. See what I mean Jackson no point worrying about the future you never know where it might take you!!

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Oh Tot! I spent yesterday frantically going over contents insurance and improving my cover, because the flat opposite has been flooded from empty flat above it! Congratulations on still standing.

Wow - some year Tot; definitely well done for still standing :-). Hope everything goes to plan and you actually get into your own flat soon.
Jx

Thanks Mosie. I was lucky no real damage to contents and I will end up with a ‘new’ flat that I could never have afforded all at once. Us singletons are stronger than we think

Thank Jackson, keeping everything crossed just waiting for confirmation for 24th July. I think it fair to say I am just a little bit excited. Lol!