Hi - I hope the collective hive mind might be able to help me? My father was diagnosed with PSP two years ago, and has probably suffered from it for the last 5ish years or so - although we're told that he's been diagnosed at an early stage, which is something. It's being managed through a combination of medication and physical therapy. He is declining faster physically than mentally, although cognitively he's much slower than he was. Of course all this happens (mostly) in slow motion so it's quite hard to view it objectively - if you know what I mean? We're lucky in that two of my siblings are in health care, so they're very good at keeping an eye on him.
Following a couple of really bad falls, it has become obvious that the stairs are now a very real danger for him and it's now a matter or when, rather than if, he has a terrible fall down them. To try and prevent the inevitable, we've looked at a chair/stair lift, but unfortunately their stairs are too narrow, with no scope for alternation, so we're looking at putting in a ground to first floor lift. I think the price of these has taken them rather by surprise, and whilst there's a host of information on-line, I'd really like to know if any of you have recommendations for any of the following (1) companies that fit refurbished lifts (2) how to find a refurbished lift (3) any good lift brands - they seemed to like the people from Stannah, but felt the Britannia lift people were giving them the hard sell and it really put them off (4) if there are any grant or funding options for putting in a lift? I suppose the important things are quality, cost and footprint (it's not a big house). I think making a bedroom for him downstairs is the least desirable outcome, it's all been very emotionally very tough on my mum, although she's great at soldiering on, I think losing him from their bed might be too much for her.
Anyway - thank you all so much for your thoughts, I've been (silently) reading this forum for years and feel like I know some of you quite well! Always a brilliant source of information and feelings of companionship.
Yertle x
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Yertle
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Others will be able to give advice on lifts although a friend had one and it was a great help. Are you in the UK? When my husband fell downstairs the OT suggested a lift and said funding was available. I decided against it, however, as he couldn't use the upstairs bathroom and we had our garage converted into a wet room. I decided that when the time came, he would have to move downstairs. Our stairs were wide enough so we had a chair lift fitted. The OT said we shouldn't have one as they are dangerous for people with PSP but he managed to use it without accidents, with my help, for two years.
Think about the future when your dad will probably be incontinent and in a wheelchair. Will his upstairs still be suitable and will he be able to get into the bathroom in a wheelchair. It's good your mum still wants to share a bed with him. I did with my husband but then bought single beds put close together ( to save washing double sheets when they were wet) and now he has a hospital bed, essential as he is unable to move without help. He is now downstairs. He spends time in bed each day to stop him getting pressure sores from sitting all day and it's easier him being downstairs to keep an eye on him and for him to feel part of what's going on. We would not have had room for a hoist upstairs and the suppliers said they couldn't take one upstairs because of the weight. "Health and safety" wouldn't allow it to be lifted.
The lifts are amazing and brilliant if your dad can remain sleeping upstairs and if funding is available but will work out expensive if you have to pay and he eventually has to stay downstairs.
Hi, why so silent over all these years???? One thing I have learnt from this site is, we all need each other! It helps not just from receiving advice and support, but giving as well!
I have no experience of lifts to be able to help you with any serious advice. Just to ask a couple of questions. NannaB addressed one, regarding your Dad able to use a wheel chair upstairs. Mine would be, if your Mum wants to stay with your Dad, can their bedroom be moved downstairs? With all these things, you have to think outside the box. Wipe the slate clean, then decide which room should be used for what? I have recently had work done on our house, to give better access, now S is in a wheelchair. Decided that the hall was far too small, so had a wall moved back 600mm. We live in a bungalow, so one bedroom is now at bit smaller,but we have a lovely huge hall. The difference is incredible, so much easier for me, the house seems so much bigger, must have easily covered the cost by the improvement to the building. Win, win all the way!!! Life, living with PSP, is expensive, but at the end of the day, you have to decide what your priorities are and your Mum and Dad being happy together, for as long as possible, has to be high on the list, what ever the cost!
I'm afraid I don't have any direct experience of lifts. My husband was diagnosed in 2013 and we wouldn't be able to manage now if we hadn't moved eighteen months ago to have single floor living. We have two adjoining ground floor bedrooms (one each) and have just had a wet room installed and laminate flooring put down so that everything is easily accessible and 'wheel able'. D has a hospital bed and hoist so space is needed in his room for that and his wheelchair and commode chair which doesn't leave much room for me! But I am just the other side of the wall and we can keep both doors open. I also have a monitor on which I can see and hear him from my bed. If you don't have any opportunity for ground floor living, do make sure whatever lift you get is big enough and suitable for a heavy powered wheelchair (in case he needs one) plus carer.
Facilities grants are available. (I'm presuming you are in UK). You have to have less than a certain amount in savings (about £23,000 I think) but income is also taken into account. We were turned down because of D's small private pension.
Hope you can find a solution that suits your dad and mum.
They often have equipment grants too (not subject to means test)... but they don't have much so they keep it quiet... you have to ask for one... We got a few thousand towards a device to get the wheelchair down the 8 steps to the street. Had to pay the rest ourselves... better than nothing.
Hi I agree with NannaB, before fitting a lift consider the future. Discus the ideas with your OT, if you have not got one contact your local Social Services and GP as OT's services are provided by both. They will advise on adaptations needed to make your dad safe and ease your mum and your caring duties, also will be able to advise on funding (usually means tested). We investigated stairlifts and lifts but OT advised against them as can cause falls when mobility reduces and standing can be uncontrolled. They said it would be better to adapt downstairs for wheelchairs, downstairs bedroom and wet room. We decided to move to a bungalow which we had planned to do for retirement and did the adaptation with OT advice before moving in. Also the OT helped find tradesmen and vetted quotes. A note from a local estate agent fitting a stair lift can reduce value of the property if not taken out at more cost.
No answer suits everyone discuss alternatives but keep in mind PSP's pernicious progress what you think you need today may be a hindrance in future.
Thanks everyone - really great guidance and lots to think about. I think we probably need a family conflab about whether upstairs will be suitable long term for wheelchairs, hoists, wet rooms etc. I think it might be possible!? I don't know though. We are in the UK, so good to know about the possibility of (or lack there of!) of grants.
Heady, you're right, no excuse for hiding in the shadows for so long. I read through new blog posts most mornings on my commute. I know this experience isn't unique to me, but every time I think I've 'got there' in terms of accepting his new limitations, something else changes and I feel like I have to come to terms with everything all over again. So I suppose the reason is that, despite myself, I still find the reality of it all quite difficult. I haven't told any of my friends, which on reflection feels a bit weird now.
Anyway - out now - here I am! Hello!! Thanks everyone for your advice on lifts and, over the years, in helping me feel less alone x
Hi, belonging to this site has stopped some of that awful lonely feeling for me. Knowing I can chat to others, who are feeling exactly the same as me. Friday evening and nowhere to go!!! It's my husband that has PSP.
One thing you will be learning fast, never, ever trust PSP, if you think you have one symptom under control, another bites you on the bum!!!
You say you haven't told any of your friends yet, who is helping you? Who do you go to for some support? I know this is extremely hard, but denying, if that's what you are doing, will certainly not help. Don't get me wrong, I totally understand, every single one of us is in some sort of denial. Please talk to us all about your fears, no one will judge you, we all hate this disease with a vengeance. Watching our loved ones suffer is not "pleasant", one minute we wish it was all over, then the next we want them to live for ever, no matter the pain. Terrible Catch 22!!!
PSP is not the end of the world, it just feels like it. There still will be good times ahead, you have to recognise them, when they come your way and ENJOY!!!
We put in a stair lift. Big mistake. Only lasted 2 years before my wife ( PSP diagnosed Feb 2011) could not use it. We were recommended to a Terry's Harmony wheelchair lift. The installation was brilliant and the lift is solid and works well..It seems like a proper lift made by a proper lift company and gives you confidence.( My wife once spent 36 hours trapped upstairs when the stair lift failed). We were lucky and the lift runs from the hall to the landing. We bought new and the total cost was £10, 000. Sounds a lot but actually twice the cost of the stairlift and infinitely better.
Don,t know about reconditioned lifts but do know that reliability becomes absolutely key as this cruel disease progresses and mobility worsens so not sure penny pinching is advisable. Our lift is probably the best and most essential piece of kit we have bought and it gives my wife access to the whole house rather than the disease confining her to a couple of rooms. This is very important psychologically as well as from a purely practical point of view.
you should ring your local council and request a review for a disablement grant, it is based on income not savings.
we are having our lift fitted at the end of the month had to self fund but reputable company are supplying, second hand lifts are very difficult to get , stair lifts generally are little use for PSP
Yertle. Welcome! Just when you make one accommodation another is necessary. That is the sad nature of PSP. When my husband was where your father is now he did take a bad tumble down the stairs-stone I might add. We moved our master bedroom downstairs. Admittedly harder psychologically than physically. We made the guest bathroom more accessible with grab bars a handheld shower attachment and a toilet seat riser with handles for support. Then he became incontinent. When the falls continued to worsen our expansive home began to feel like a minefield he had to maneuver on a daily basis. The kitchen seemed like an eternity from the bedroom when he fell trying to get out of bed unassisted. When the falls required trips to the hospital it took forever from our rural location. With a heavy heart we sold our lovely home and moved to a handicapped accessible temporary apartment then purchased a small single floor home. All of this transpired in one year. I know change is difficult! Your mom wants something to stay the same because she has not any control over the progression of this disease. But the key to dealing with PSP with adaptability because whenever you get too complacent it throws you a curveball. I understand the feeling of slow motion...at an accelerated pace! If that makes any sense to you at all.
Not telling any of your friends makes it less real for you. This way they are not always asking you how he is and you can pretend everything is still normal. Not an admonishment, (we all do this in one form or another). But unfortunately PSP is the new normal. You are such a loving daughter and your mum is lucky to have you. I wish I had one just like you
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