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OH beginning to deteriorate

(41 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.

annsixty Sun 27-Mar-16 09:59:39

I can only offer you sympathy because you know in your heart that only you can make that decision. It is going to be so hard but make it you must. We have left it too late the sheer logistics on moving are beyond me so we will stay until someone else makes the decision and does the work involved. Are you perhaps waiting for your
H to decide without your input so you won't make him feel guilty and you don't feel you have pre- emptied him getting worse physically?

Badenkate Sun 27-Mar-16 10:03:32

My heart does go out to you Luckygirl (((hugs))).

I have a friend who was in the same situation as you but maybe a year or so further on. Her DH was falling more and more frequently and she decided to move into a bungalow but in the same town where she could still access her support network. It's been a wrench for her to leave her house but I think she is finding life easier with less worries about DH falling down stairs etc

Riverwalk Sun 27-Mar-16 10:08:38

Lucky I've nursed a number of PD patients, privately in their own homes, and do understand the physical difficulties as the illness progresses.

Your lovely home obviously gives you both a great deal of pleasure and I'd think hard before moving.

The physical problems your DH has with mobility, dressing, etc will still be there wherever you live. A downstairs bedroom or a stairlift, the latter can be fixed to the most difficult oddly-shaped staircases, might be a better solution.

Alea Sun 27-Mar-16 10:10:46

I have every sympathy Luckygirl and would not presume to give advice as you must decide what you choose to do. However, an example.
My mum had PD as well as other mobility issues which meant she was often hospitalised after falls. Dad could not lift her and it would require an ambulance. They lived in a charming if cold Scottish cottage with lovely views over the river and to the hills beyond and spent many happy hours in their conservatory looking at the view. The house was built on a hillside with a sloping garden with no vehicular access, but 26 steps up from the front gate plus a sloping path to a level terrace and the front door. You can see where I'm going with this. Mum was eventually effectively a prisoner in the house as the only way she could get out was to be carried in a stretcher chair. Once in hospital, and subsequently in a care home for convalescence (actually I realise respite care for Dad's sake) she could be taken out in a wheelchair, go for "runs" in the car, afternoon tea etc and see people.
I think a move before it is forced on you would make sense, but you must decide, in collaboration with your DH, the rest of the family and your DD. If I could have persuaded my parents to move to a bungalow/a house with flat easy access or a sheltered flat they would have retained more independence for longer and possibility improved mobility. Oh I do feel for you, but a house is a house, YOU make it a home. Sorry to go on so long flowers

Riverwalk Sun 27-Mar-16 10:14:11

Sorry, meant to add that the cost of moving and doing-up a bungalow would be far more than installing a stairlift, downstairs wet room, safety rails, etc.

thatbags Sun 27-Mar-16 10:22:27

Just sympathy, lucky flowers

merlotgran Sun 27-Mar-16 10:27:13

Luckygirl, There is not much worse than having to leave a beloved home because life has thrown an impossible situation in your path.

The only advice I can offer is to 'talk yourself into it'. If you really feel that remaining where you are would be full of difficulties for both of you, not just your DH, go to bed at night thinking of as many positive points as you can with regard to the move.

Not having to climb stairs/steps to the house/negotiate steep hills.
Everything on one level means maintenance is cheaper.
Housework takes far less time.
Take out an existing bath and fit a large shower cubicle or wet room.
Plan a new decor.

The list could go on......

You mentioned before that you now have to do all the driving so will you be nearer to shops, medical facilities etc?

Best of all - think about the advantages of being so near to your DD and DGCs and how much easier it will be for them to support you both.

It's a hard process because leaving a much loved home is so painful but once you have made the decision, don't waver......Just do it.

I hope things work out for you one way or the other.

LullyDully Sun 27-Mar-16 10:35:05

Take care. flowers

Synonymous Sun 27-Mar-16 10:40:20

lucky unfortunately you are the only one who can make that decision and it is a toughie. Annsixty is very qualified to advise but in the end it is an individual thing.
Perhaps visualizing yourself in your current home as DH deteriorates and working out how and if you could manage both physically and financially without making yourself ill would assist. If you can do so, talking to someone who is coping (or has coped) with the latter stages would give you a better insight which would help the decision making.
Also visualizing yourself ultimately on your own there would be helpful and how your own life would be from that point on.

I have a feeling that you know what is best but are reluctant to commit. sad

harrigran Sun 27-Mar-16 11:01:27

Difficult decision lucky flowers

kittylester Sun 27-Mar-16 11:10:43

Another way to look at a move is that you will make it your home before your DH gets too ill to appreciate it and you can make some happy memories for all of your family to add to the lovely ones you already have of this home.

I feel for you both flowers

Luckygirl Sun 27-Mar-16 11:29:52

Thank you all for your very helpful posts.

One factor in here is that OH is also a very anxious man and has AF, and I am not sure that he would be able to cope with the stress of a move. I would have to get people in to help with everything physical, but there is all the stress of trying to sell, which he would fine very hard indeed.

There might also be a problem about the singing group that I run - it would probably fold as it would be too far for most of the singers to come. I would miss that - it helps to keep me relatively sane.

When we bought this lovely place we did not think twice about the hill and the gradient of the drive - we just fell in love with it. Internal alterations would be very helpful, but would not remove the problem of us not being able to get down the drive as time goes on.

My DD lives in a flat area of the county; but the views are less, and there is traffic noise from a main road nearby - we have been truly spoiled by having this wonderful peace and quiet for so many years.

Has anyone actually made such a move from a loved home to something more sensible?

Charleygirl Sun 27-Mar-16 11:34:57

May I throw a spanner in the works? How would you cope if you could no longer drive?

Also you can spend a fortune indoors with a stair lift, wet room etc but it still does remove the steep hill outside. I know what I would do and before I was too incapable but it is your decision. Good luck.

Synonymous Sun 27-Mar-16 11:54:21

Lucky yes we just did. DH also has AF. We were anxious not to get 'trapped'.

You have to grab every offer of help that you can, use some very good removal people and enlist the family as much as possible. If you start decluttering and getting rid of extraneous stuff even before the house goes on the market it will spread out the work.
As for the singers I think you would be surprised! If enough come you can recruit others in your new area.

DH thought of all the excuses under the sun and was most reluctant but now he wouldn't go back if you paid him. We both love our new home as that is what we have made it.
At least you would be so much nearer the family when you need it most.

annsixty Sun 27-Mar-16 11:55:15

This is a slightly different problem but one where a decision had to be made. I have got very friendly with a neighbour whose partner of 23 years died 17 months ago.
She is a real homemaker and has turned the house into a beautiful home.
She has landscaped the garden and it is her pride and joy, she will work in it for hours.
Because they never married her partner's pensions died with him although she got the house and capital but her own pension does not even cover the bills and living
expenses. She is in negotiations for a tiny bungalow and will hate leaving her home but she said to me one day, I know I am going to miss it but having a lovely home and garden doesn't pay the gas bill.
Having a lovely home and view will not compensate you if you have to give up driving and resenting the same 4 walls. Likewise you will not always be there to run the choir, so put YOURSELF first for once.

durhamjen Sun 27-Mar-16 11:56:51

We did, lucky.
My husband had cerebellar ataxia, and was falling downstairs.
He always hated bungalows, so we rented one for six months. in York, which was where we lived. We not only sold the house, but it was a guest house, too, so we had to give up the business.

Then we realised that we did not know many people in York. All our friends from there were guests.
So we moved to the village where our son and his family live, renting again for six months. We bought this place eighteen months before he died.
If we had still been living in York, it would have been difficult. Our sons were brilliant at helping, and still are.
We never regretted moving.

cornergran Sun 27-Mar-16 14:05:53

There's so much tied up in this decision, Lucky on all sorts of levels. I'm wondering if you and your DH speak about it and what he might think. A good friend, knowing his health was fast deteriorating, talked his wife into moving to a more manageable home in a more accessible location and they are now so pleased they did as the praticalities are so much easier, although of course nothing can change the realities of the illness.

We decided to move to an easy to manage home while we were both still relatively well. It was hard work and even harder emotionally but now we are settled we know it was the right decision. I would echo thoughts about the reality of your geographic location - the peace and quiet could feel a little like a prison if you lose the opportunity to move around freely, the drive could turn into a hugely resented Everest if you are unable to leave your home because of it.

Please think about yourself, talk with the family if you haven't done so, if they can and would help with a move that has got to lift some of the undoubted stress of it. Please do let others help you. I really don't think there is a definite right or a wrong in the situation you describe, going or staying both have huge challenges, its about what is best for you both and your family. If it were me? I can't be sure of course but I think if it were feasible I would move. I would remind myself of the joy I had experienced in my home and yes, talk myself into seeing the positives for the future from a different location. In essence I would choose family over the view I think, but that's today, who knows what I would think tomorrow. Good luck with the decision, there's nothing more unsettling than simply going round in circles thinking.

hulahoop Sun 27-Mar-16 14:36:15

Hard decision lucky I saw many people have to make this decision when I was working I have always thought at least with a bungalow stairs never become a problem less housework I also saw people who had a bungalow leave hospital quicker because it being easier to move around and also not having to wait for adaptations eg stair lift to be completed. Like other have said house could become a prison if you can't get out I don't envy you having to decide but I would personally go for bungalow near family .

obieone Sun 27-Mar-16 14:48:49

My dad had PD, and it progressed much the same as your DH by the sounds of things.

Where do you want to be for yourself in a few years time?

Sugarpufffairy Sun 27-Mar-16 14:53:22

Some very well thought out information. It seems a few of us are going to be on the move.

Tizliz Sun 27-Mar-16 15:19:43

Just to put the other side (playing devil's advocate). When my father died my brother wanted our mother to move close to him. She didn't and said she was glad she didn't as my sil inherited a house which they moved to (so she would have had to move again) and she was glad she didn't leave her friends behind.

NfkDumpling Sun 27-Mar-16 15:56:35

Didn't you having similar thoughts some months ago Lucky? Perhaps deep down you know the answer?

It's nearly ten years since we moved from the home which had grown with us as the family grew. I still miss the trees and woods behind, and the house itself, but have no regrets. The house and garden were taking more time and effort to keep up and we didn't want to see it deteriorate as so many do.

I thought as Merlot does. We were finishing that stage in our lives, just as we'd finished with saving for our first home, raising a family, and so on. I looked to the advantages. Less housework, any easy garden, no longer dependent on a car, closer to shops, doctors, etc., more time to travel, go out for days and look at other views. (It actually took us two years to 'downsize' the sheds, loft, spare rooms before we could actually think about the move itself!)

Is there any possibility you could rent out your present home if you're going to buy somewhere smaller? Thus not burning your bridges completely?

Only you can work out what help you're likely to need in the future, how your present home can be adapted, how easy it is for your daughter to get to you when you need more help, etc. - and especially, how important to you that view is.

rosesarered Sun 27-Mar-16 16:14:58

Do the move sooner rather than later LuckyGirl we all lose energy for things as time goes on, and we did that very thing moving to a beautiful bungalow from a larger house, and we love it! Less housework to do and a medium sized garden that can be managed.Near our DC and DGC too.
???

NfkDumpling Sun 27-Mar-16 16:16:24

(I assume you have made a pro's/con's list!)