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OH beginning to deteriorate

(42 Posts)
Luckygirl Sun 27-Mar-16 09:50:35

OH has PD, and they say that you get 5 good years after diagnosis. We have had that and more. It is now becoming more of a problem - he can barely get up the stairs at the end of the day, or get undressed and into his PJs.

What makes me exasperated is that I know, from the letters that he gets from the consultant (which he does show me) that they have an unrealistic impression of his abilities, because he does not tell all.

The spectre of my OH needing more help is looming, and it alters the relationship and is a difficult transition. I am trying not to take over "his" jobs and make him feel without a role - but it is hard to watch him struggling.

I have thoughts buzzing round in my head as to whether we ought to think about selling up our home (lovely views - lift the spirits - we really felt that this was our mecca) and moving nearer a DD where the terrain is flatter (we live on a very steep hill) and a downstairs bedroom is feasible. It would break my heart to leave here, but I know that I will not find things easy here as time goes by - I can barely get up and down our steep drive myself. It is such a magical spot here but 100% impractical. What to do I wonder?

I am concerned that if we did move we might be constantly unhappy at leaving our dream home and this friendly community; but equally we need to take some sort of decision before things become impossible. I do realise that we have been very lucky indeed to have lived here at all and that others have never had such a privilege.

There is a bungalow very near my DD on the market - we could walk to each other's homes - and the GC could pop in and out at will. It is not a great property and would need work on it to make it OK. I know it would be the sensible thing to do but am worried that OH might see it as the final defeat and give up.

What to do? - sorry to have rambled.

aggie Sun 27-Mar-16 16:29:05

OH has PD and suddenly went from walking to the shop (very slowly) to unable to get out of the chair , he was admitted to hospital and was there for ages till the meds got sorted , but not back to what he was . While he was in Hospital we turned the kitchen diner into his bedroom and en suite . I does help , but my new kitchen is tiny , we have only the one living room now and can't escape each other . My DD wanted us to move to a Granny flat at hers a few years ago , but we refused ........ boy am I sorry . I can't leave him , I have had to give up Bowls club and other local clubs and am kind of resentful . I say move while you can . We have lovely carers coming in and I nip to the shop or out for a breath of air in the short time they are here , otherwise I would be crazy

Indinana Sun 27-Mar-16 18:40:22

I am sorry to read of your OH's deterioration Lucky - it has given you a lot to think about and I can see your heart and your head are at odds with each other. I read through your OP more than once and a couple of things stood out:

The spectre of my OH needing more help is looming

but I know that I will not find things easy here as time goes by - I can barely get up and down our steep drive myself.

I have no experience of being in such a position (yet), so it's difficult for me to advise you. But my gut instinct is to say 'do it now'. However hard it is to leave your lovely home, it may be harder to love it if it becomes your prison.

Don't leave it too late, but if you can't make the decision quite yet, perhaps you could start by going through your house room by room, decluttering, taking things to charity shops while you are still able to leave your OH for short periods. And then later on, if it becomes clear that you can put the move off no longer, at least the worst of the house sorting is done.

flowers

Luckygirl Sun 27-Mar-16 19:06:05

Your support and suggestions are greatly appreciated. I have so much thinking to do now. I have to start by adjusting to the fact that the PD is catching up with us - that feels like a big challenge at the moment.

Thank you for your help.

NfkDumpling Sun 27-Mar-16 19:54:46

flowers

FarNorth Sun 27-Mar-16 20:10:22

It might be an idea to write down all the thoughts you have about the situation, not in any order, just as they come to you.

Talk to your OH about it. You are concerned about him being anxious, but he may already be anxious about how you both will manage where you are. A decision to move could help to reassure him, rather than the opposite.

These are only suggestions, of course, and I wish you well with whatever you do. flowers

Newquay Sun 27-Mar-16 22:37:05

Oh lucky, how sad, I really feel for you both. It has to be your decision but, like others have said, you have to be practical. You NEED somewhere that you can both manage i.e. On the flat, a bungalow, easy access to everything.
My dear sister's husband became ill with a degenerative neurological illness. She was a nurse and was v practical. They sold their lovely family home (boys by then independent) and bought a bungalow on the flat, still in the same village. Bathroom became a wet room. Ramps at doors to accommodate wheelchair. And so it went on, always one step ahead with hoists etc. It was perfect for their situation. She is still young (enough) and fit so after his sad early death bought another house still in the same village which suits her well.
Sadly time is never on your side in these situations so you have to get a wriggle on so you can BOTH benefit from the move and, as others have said, accept all the help that is offered especially involving family and close friends.

grannyqueenie Mon 28-Mar-16 05:54:59

I feel for you luckygirl with such hard decisions to make. Sadly none of us has a crystal ball and we have to make decisions based on the information we have at the time, only guessing at what the future may hold for us. Others are more qualified to offer advice than I am, but I think making decisions while you still have choices is always better than finding yourself trapped by circumstances. Thinking of you as you try to balance conflicting needs and priorities x

Nana3 Mon 28-Mar-16 07:20:05

My parents stayed together in the rather isolated home that they loved for many years, not going out unless I took them. Carers went in four times a day, they had a stair lift and the situation worked well and enabled them to stay together as dad got progressively worse.
It didn't end well when dad went into hospital where he died and mum went into a care home. Now I have to sort out the sale of their house.
The responsibility of organising all their care and finances was huge and thank goodness they had given me power of attorney. I lived only 15 minutes from them this really helped.
I think I am saying think ahead luckygirl if you stay there are things to be done. If you leave there's no going back but you would be nearer to family when you need more help also making it better for your DD if she is going to be a carer.
Best of luck to you flowers.

carerof123 Mon 28-Mar-16 07:41:46

One aspect that needs taking into account is the fact that you do own your own home and can have a choice. If you were in a council house or social housing as its now called things would be more difficult. You can at least make the choice of the area you want ie nearer family and you can choose a bungalow over a flat or sheltered accommodation. My husband has COPD and this chronic illness can never be cured just managed. I know he will get worse as he gets older. We live in social housing and have approached the housing association about downsizing to a smaller property. We were told as we are a couple we would have to accept a one bed flat. We would have no choice in the area this would be either. I know you have some serious decisions to make but count your blessings that you do have a choice. I really hope that things work out for you and if i were you i would go for the bungalow near to your family.

Falconbird Mon 28-Mar-16 07:42:37

This is so hard for you luckygirl. I had to move house twice when my dh passed away and it's not something to be taken lightly as I'm sure you totally appreciate. I had the support of two of my sons which helped enormously.

Would your husband be able to help you with the move, or do you have people who could help you out, would the move make him anxious and affect his condition?

I don't know your age but I was 65 when I embarked on the two moves and it was difficult for me but I'm so glad I managed it.

This is such a difficult decision for you both and needs a lot of thought and planning which is what you are doing.

I sincerely hope it all works out well whatever decision you make. flowers

Gracesgran Mon 28-Mar-16 08:28:31

I don't think it is simply "on the one side ... and on the other" carerof123, many things limit choices but of course you are right in that lack of capital is one smile

I still cannot believe how few houses/flats/bungalows we are building or how few "social housing" solutions there are. We have commoditised homes and no longer seem to feel concern that so many are homeless or with few choices or that huge percentages of income or taxes in housing support are going to just keep a roof over peoples head.

It live near my mother and my daughter but this is a very expensive area and I am the poorest of the three of us. I would make sense for me to actually move further away if I decide I need single floor living but I don't feel I can even contemplate that while caring for my mother. She has promised to live to 103 (don't ask me why) but by that time I will have been caring for a physically disabled, Alzheimer's sufferer for a further eight years and be well into my 70s. I do not begrudge the care but I am aging too and have my own health issues and I wonder if I will be able to contemplate moving further away by this stage so will probably have to choose a small, one bedroom - all I could afford close to my daughter - and cut my coat according to the cloth.

This really is a most depressing subject when I think of it. sad

Nelliemoser Mon 28-Mar-16 08:38:00

Luckygirl What difficult decisions to manage. There are so many good opinions on here I cannot really add to. I would suggest that if you do decide to move don't leave it too long. ((((hugs))))

Penstemmon Mon 28-Mar-16 09:31:07

Tough decisions in a tough situation flowers

My brother recently sold his house so that he and his wife could buy a bigger home together with his in in-laws as his FiL had PD. They have created a "granny flat" but in reality share the house. Not everyone's solution and depends on all sorts of things but 18 months down the line it seems to be working ok.

Personally if I knew a move was inevitable in the long run I would try to go sooner rather than later so there could be good memories in the new home too.
If your DH did not have PD would your current home be where you would stay indefinitely? Or did you plan to move eventually as you both got older? All these factors will be contributing to your difficult decision, I hope that you can make a choice that benefits you both x

glammanana Mon 28-Mar-16 09:56:16

What a tough decision to make Luckygirl but so many good ideas for you to consider and just remember that all the memories of your lovely home are transferable to what ever decision you end up making.flowers

Luckygirl Mon 28-Mar-16 10:58:41

Thank you again for all these thoughts - I think I need to get a piece of paper and do a cost/benefit analysis. At least I would have dealt with the "head" bit, but the "heart" bit might prove a bit more difficult.

carerof123 - I am sorry about the fix you are in and you are of course entirely correct that we are in an easier situation than those in social housing - we do of course have much more choice and I am thankful for that.

NfkDumpling Mon 28-Mar-16 21:40:20

A bungalow isn't necessarily absolutely essential. My friend had Parkinson's and stayed in their terrace house with a stair lift. More important was it's position close to all the facilities, friends and assistance he needed. We've downsizd to a house as the situation is right (doctors 40 paces!) knowing that it can be converted to downstairs living if necessary and will take a stair lift.

There is an awful lot to consider. We thought we'd found a near perfect bungalow but turned it down as it was too far from shops etc, and had street lights front and back.

Doing a wish list and prioritising will also help your heart look forward.