I am becoming increasingly aware that our house where we have lived for the past 20 years is becoming increasingly difficult to live in with PSP . Veronica now has our living room as her bedroom whilst it still doubles up as our living room . Getting between things and getting to her wardrobe often produces falls .Our hallway is quite small and the downstairs wc we are intending to convert into a small wet room - but the space will be tight .Our other downstairs room is our large family kitchen where in the past we have spent most of our time . Unfortunately you have to go down 3 steps to get into it and although I have had them altered to make them wider and less steep I have to supervise Veronica going up and down them as she can't do them by herself and if she trys it could be dangerous . At the moment she can just about manage them but I keep thinking of the future when she can't and then that will mean her total living area will be the bed/sitting room which presumably will get more cluttered with equipment as time goes on . It will also mean me having to take trays of food three times a day backwards and forwards from kitchen to bed/sit . There is no way we can gain access to the kitchen other than by the stairs . A chalet bungalow which we looked at a year or so ago has come back on the market .It is in the same village so all our local facilities stay the same but it is not such a nice position and not as individual or quirky as our house - however the space inside is easy to manage with two ground floor bedrooms a good sized bathroom sitting room and big kitchen .Doorways are all wide for wheelchair access so going from one room to another is easy . It is also financially viable .

The problem is Veronica's cognitive state- she gets easily confused likes things to stay the same -depends on her routine .Obviously she would not be able to help with the move in any way nor would she be able to put her stamp on the new place- the whole thought of moving throws her into disarray .I don't want to move - not sure I have the energy to do it even with my daughter's help who has moved so many times I have lost count .One thing that really gets to me is that every where I look in our house 'especially my wife's studio although she never goes in it now as it is upstairs - I see her mark - a piece of drift wood here a child's drawing there - so much of the house is an extension of her and as I am now losing her bit by agonising bit I want to hang on to her for as long as I can. If I go to a new place she won't be there around me not as the person I know anyway .People say if their house was burning down they would try to save their photographs - well it feels a bit like that if we go and try to start a fresh - it will be without substance . Sorry -I don't know if this makes any sense - I suppose at the end of the day its a question of heart over head . I don't expect people to come up with a solution - I know I have to make the decision myself but if any one has gone through a similar process please tell me how you dealt with it . Very perplexed and not sleeping very well Georgepa

16 Replies

  • With my husband newly diagnosed I am anticipating being in similar s situation and so we started looking at bungalows.......nothing suited , either not big enough for wheelchair as it use or too small bathroom and so on and so I have come back full circle and will remain here. I have an integral garage and will try to have it converted into wet room with a bedroom .Do you have a garage. I was thinking of borrowing against house to get it done but I am told councils will give grants or help towards costs if occupational therapist recommends the work is done. Referral to therapist is via doctor. If no garage the therapist should assist with other ideas for adaptations or even purpose built room added on at council cost up to max of about £30,000. This has to be paid back no interest if house sold within 10 years. Just a few ideas for you . Best wishes

  • We moved out to Turkey almost 11 years ago having bought a small neglected orange grove with a one storey mud-brick house on which we built a two-storey extension. We knocked walls down in original house to make large living area but kept one room as guest bedroom and put large bathroom on ground floor of extension. Now we sleep in what was our winter dining room and bathroom has been converted to PSP-friendly by removal of bath and replacement with large walk-in shower. We know a wheel chair could work as doorways are wide. A ramp has been built from front door to drive. Last year we had an amazing stroke of luck when an old friend came to visit bringing the new woman in his life who turned out to be an OT specializing in Parkinson's. She specified bathroom and ramp. I was already thinking of getting bathroom altered and her spec was almost identical to my plan. But the ramp is placed where I would never have dreamed it could be. So get your OT to come and look before you plan a move. Make the living room just a bedroom and stick a sofa in your kitchen, or convert the garage as previous reply suggested. And see doc and get some sleep medication!!!! G

  • George

    We have been through the same thing as you are going through with our mum.

    Have you been in touch with your Occ Therapist you should have one asigned to you. They can assist with advice on adaptations.

    Is your house too narrow for a wheelchair. If not could a ramp be fitted so that your wife still has access to the kitchen and then meals can still be taken there.

    Does her wardrobe have to be downstairs, the less furniture the better to avoid falls.

    How big is your kitchen area, is it big enough to be used open plan, ie have a sitting area/kitchen thus completely using what was your living room into a bedroom and maybe having a fitted shower area installed. All things to consider. You will be surprised at whats on the market these days.

    1st step contact a Occ Therapist, your local Adult Social Care Worker and also ask them to put you in touch with The Disability planning department (they can help with advice on planning for conversions etc)

    If you dont have to move dont its enough dealing with this god awful illness.

    Try to stay positive we are all here for you.

    Opope x

  • hi georgepa

    i'm so sorry that you are not sleeping and worrying about where you might live with Veronica .

    would it be possible for u to adapt ur present home rather than moving??

    it would be less stressful all round if you could NOT move whilst V is still with u -, have you thought of the possibility of a care home for her when you can no longer cope with her ??

    I know it is difficult predicting what will happen with this PSP but u do need an OT to come and visit and see what could be done

    sorr y i cannot be more positive btu i cannot imagine another move from here - we re now on the ground floor of a wonderful 19th century house with v wide doorways nbut we had to have the bathroom done b4 we moved in and it cost a lot ( no VAT HOWEVER) \

    lol jill


  • When PSP was diagnosed my first thought was moving as we have a very steep drive and steps to the front door. My husband was adamant he didn't want to move. We have been here since 1977. I didn't either but knew access would be impossible once a wheelchair was required. Four and a half years later we are still here and most problems have been overcome. I bought an electric wheelchair to cope with the drive, and save my back. The French windows have been replaced by removing bricks up to the damp course and lowering the entrance. We have converted the garage which adjoins the house into a wet room and I thought small bedroom but the hospital bed we have now is extra long and the OT banned it from that room. Has the OT seen where your wet room will be as it will have to be able to hold a wheelchair and extra person? We have a tilt and lift wet room chair which is brilliant but takes up room. My husband is in our dining room but his clothes are still upstairs avoiding a wardrobe downstairs. A small chest of drawers holds his underwear, pads etc but I bring his clothes downstairs every night ready for the morning. We were offered a lift to take my husband from our lounge to the bedroom. We rejected this as he wouldn't have been able to use the bathroom but the OT may have an idea for your kitchen steps. There are wheelchair lifts available for most steps if there is room to fit it. I know it sounds harsh but as your wife doesn't use her studio any more, could the space be used for storing furniture not required that is taking up room downstairs. I've made a bedroom into a dining room, putting our large dining table in there and buying a smaller folding table for the kitchen.

    I do hope you don't need to move as you don't want to. If you haven't already done so, seek advice from the OT but remember it isn't her/his house so do what is best for you.

    Very best wishes.

  • George...better the devil you know than one you don,t...being in her own surroundings is likely most important,I hope you can remain HOME Rollie

  • it is all so stressful George but once you bite the bullet and sort things out it will make things easier .

    we don't want to move. my husband is housebound now .

    I didnget in touch with social services for the start and had an OT . just started off small with some rails and toilet frames . as time went on we needed more . we installed our own stairlift and. Walk in shower but he cannot use either now .

    I'd I had know then how the illness might progress I would have done things differently but that's hindsight .

    they have since given him a made to measure chair , commodes , and now two ceiling hoists , they are portable so no knocking the walls about.

    I woudnt manage without them now .

    we brought the hospital bed he also has downstairs and gradually I have had to give two armchairs to charity and sideboard , large table and chairs . I bought a smaller sideboard and a folding table with two chairs , whe have spares upstairs . Ai am now thinking of raising the carpets and laying wooden floor to make things. Easier again , The only thing we have got is a shower downstairs .

    my advice is to once again bite the bullet and get rid of of all what I joking call STUFF ! Because that's what it is . your still have your wife which is the most important . after all it's nothing without her

    like all the others aid get in touch with social services NOW and ask for an OT . get a carers assessment form . tell them it's urgent . What part of the country are u or even which country !

    I live in Wlaes .

    I haven't filled a carers form in yet . It's the only thing I haven't done but will do so today .

    I have been a cere for well over ten years so it is about time I admit I am a carer as well as a wife. Lol

  • so sorry Georgepa it is a dilemma and I understand not wanting to change.My husband earlier tiled the shower and the conservatory himself but used very slippery tiles so were very dangerous when even slightly damp.After several falls that were slips I had someone come and carpet over.He was quite/very cross and said after my funeral he would get the family back to rip up the carpet to show his handiwork

    Around Christmas Des had a urine infection and a chest infection,at the same time I needed an investigation into a bleed and we had his younger brothers funeral. I therefore cancelled with the hospital for me.The infection made D so weak I was giving him bed baths and using bottle and comode,as soon as my GP realised I had no help and had cancelled my apt he arranged for D to go to the local hospital for assessment.Then it all happened we were given a social worker, she has arranged I get 2 carers twice a day,a sitter 4hrs a week, and Des was put in respite while I had my hospital apt yesterday.

    So my message is please don't shun help from a social worker ours has been so helpful not least in reasoning with D and found a great nursing home for him I just hope he wants to come home Monday!

    I found it difficult to ask for help and I expect as a younger man it is even harder but everyone we found are unintrusive and simply wanted to help.

    OT,s see potential where we are too close to recognise potential, in our experience good luck anyway you are not alone sleep better tonight! P

  • Hi George, sorry to hear that you are having to deal with this. We are also going through the motions of moving so I understand how you are feeling. We had a granny annex built for my mum 3 years ago, a completely self sufficient mini house joined to the side of ours. Of course, in hindsight, we would never have built it up two storeys had we known that PSP was around the corner. So, we are now on the market and looking to move to somewhere where Mum can be safer and not have to negotiate stairs and narrow doorways. The thought of it makes me feel physically ill, this is my dream house, the only house that my children have known, and now we have to pack up and move to goodness knows where. I'm sorry I can't offer any real help, but I do appreciate a little of how you are feeling.

    Good luck, you will make the right decision, even if it doesn't feel that way at the moment.

  • The problems of the usual surroundings and the progression of PSP are often very difficult as you describe. I would like to tell everyone to think ahead from the first diagnosis of PSP. Make plans early on as to how you will cope with living as PSP progresses in your loved one. I was fortunate and thought ahead. Had my bath remodeled to a roll-in shower months before it was required. On of the best things I did. Home was on one floor with all rooms accessible with ease so we managed. Your story is a good example to others. Thanks for posting. Jimbo





  • Hi george I would personally look at perhaps getting some of the excess furniture moved out perhaps stored in the studio or recycled. if you feel that you need to have a wardrobe in Veronica room try and get a tallboy one it will take up less room and all you need to do is keep a few basic clothes in it. All my clothes are in a different room from where we sleep. Late afternoon I get Brians pj's and the next days clothes ready and put them in the bathroom ready for the carer's.

    look into getting a ramp into the kitchen sounds like it is big enough to at least have one chair and the wheelchair. Perhaps you might have to get a smaller table.

    our bathroom is still a bathroom and we have glide comode that goes over the toilet and that works fine at the moment and when the time comes that Brian can no longer stand he will have to be washed in the bedroom and hoisted onto the comode..

    I am to much of a realist and sorted out things that we could do without and got rid so we have got the room for the equipment needed. We have a small bungalow. I would try and adapt what you've got rather then move because the more you lose of Veronica the more you both will need the comfort of familiar surroundings. Get the sociol worker and ot out to help and advise. Thinking of you in your dilemma. Janexx

  • Hi Georgepa, this may sound cruel to V, but the house HAS to be safe for her and fit for YOU to look after her! I'm afraid sentiment has to go out the window, when making huge decisions like this.

    I do however, agree with everyone else. Are you able to build an extension or put a large conservatory on to your house. Can other rooms be made for change of use. Just because the kitchen is where it is, that doesn't mean it can't be moved! Think completely outside the box. I know all this costs money, but so does moving. Get a very large drawing pad, imagine you have a blank page for your house and see what you can come up with, would moving a door or window 100mm, make a big difference. Would knocking a wall, or building one somewhere else, help you achieve a safer house.

    We are very lucky, we live in a bungalow, which we have converted several times. The only thing we will have problems with, is entrance to the house, but nothing a ramp and using the back patio door, won't cure. There is one important doorway, that may have to be altered, if S has to be in a large wheelchair, all the time, but a small one goes through fine. I am about to have our en-suite made into a wet room.

    George, I fully understand your dilemma, but at the end of the day, if moving makes your life easier, therefore you can look after Veronica at home longer, then thats the way you have to go! Do try thinking outside the box, or get someone in, who may be able to advise you.

    Best of luck. Thinking about you and sending lots of love.

    Lots of love


  • Hello Georgepa

    We were in the process of selling our house and by the time it was sold, my husband Roy ,who has CBD, was unable to deal with any of the finances, arranging, packing and so I had to do everything myself and because we have both been very independent and never finding it at all easy asking for help from anyone, I tried till the end to manage the move and the packing myself. We moved from a very large house and garden to a very much smaller house and garden. It wasn't until I broke down in front of family that everyone rallied round and helped me through it.

    The house we live in now is also a chalet bungalow with a downstairs bathroom and bedroom but Roy says that he doesn't like it here ,it is too small and because he hasn't had much input .I suppose that must make a difference....It may not be what or where we would have chosen if Roy wasn't ill but I would never have been able to manage living in the house where we lived before.We have lived here a year now......I really like it and I don't think Roy would have liked anywhere we moved to....it's just what he is like now!!!!!

    If you do decide to move make sure you have help....lots of it and make sure the new house is right for you to manage....I would say more than anything.

    Good luck.....I am sure whatever decision you make will be the right decision one way or the other!,

    Love to you both xx


  • Have you thought of a stairlift? Both my brother who has been caring for his wfe fulltime for 23 years and I had Stannah lifts installed (second hand plus guarantee). They have minimized the disruption but, more important, they woud mean that Veronica would still have the run of virtually the whole house, including her studio. In my wife's case, our stairs are quite wide but quirky with a landing halfway up and then a "reverse" set of stairs meaning a very sharp turn; the chair stairlift negotiates this at a very slow pace but without any problem. Even if your stairs are relatively narrow it might be worth exploring because, when the chair is at the top or bottom it folds back leaving enough room to walk up and down normally.

    Bon courage!


  • Thanks for the input we did look at the stairlift option but again because of the configuration of our hallway and landing we had to rule it out . We did take expert advice .

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