Morning all, a good morning today. I got up to find my, otherwise non-walking wife, from her bedroom almost to the toilet in the bathroom. She furniture walked and was most indignant that I should be both surprised but admittedly anxious as to her safety. However I think that and the carer showering her has sapped what energy she accumulated from a good nights sleep. She is now asleep on the settee. Has anyone else with a PSP spouse experienced what amounted to a minor miracle of rebound such as this.
On a different matter, we are now looking for a permanent bungalow to buy and modify if necessary to cope with the 'now' of PSP and the 'whatever'. I would welcome any advice from someone who is 'down the line' so to speak, with this dreadful condition and has said to themselves. "I wish I had done that" when making home alterations/plans/contingents for a loved one in a property. I am terrified of getting it wrong.
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Scottoppy
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Hi. Yes it certainly happend with my husband plus his catheter which was no longer attached to the night bag !! If you have ever read The SElfish Pigs guide to Caring you will see that is has happened to others too, especially when the carer has spent ages telling the professional that he or she cannot do something and then that person suddenly gets up and does it.
Re the Bungalow. We had to move to a bungalow because Nigel could no longer manage the stair lift and our house could not be converted.
Things I learnt: Make sure that the doorways, passage corners are wide enough for a wheelchair. We had to have two doors taken off.
Shower room which can be converted to a wet room if necessary but certainly a shower base level with the floor so a mobile shower chair can be pushed into it. We had half height shower doors/gates fitted so the person helping with the shower did not get soaked. It usually worked very well unti I put the shower filter back in uspside down and flooded the bathroom. We could not have a wet room as it was concrete underneath.
No steps up to the front door or suitable to have steps with handles converted to a ramp [there is a certain slope gradient required]. An OT can advice about this.
I made the mistake of having a high rim on the french windows into the garden. When he could no longer walk and use the handles we were stuck indoors for 6 weeks waiting for a ramp to the back french windows, with a ramp inside too, as our front access was not suitable. I had to open the garden gates so that I could push his wheelchair down the ramp and then back into the garden but that worked well. A patio area if possible, not decking as it can be slippery, as pushing a wheelchair on grass is very difficult as I found out until we got the patio done.
A view if possible from the seat where your wife will normally sit. Nigel loved watching the birds and when the weather was nice we could have the windows open so he could hear them too.
A kitcen that can be easily accessed from the lounge as then I could be in the kitchen and hear him if he called. I did end up getting a baby monitor for the bedroom in the end.
A bedroom that is big enough for a hospital bed with enough room on either side of it for carers to access from either side, and enough room for a standaid or wheelchair allowing access to the bed. We just had his hospital bed and my single bed in the room with one small wardrobe in the corner to keep pads/wipes/creams etc in. and a small bedside cupboard between us. He really wanted me to be in the same room as him. We also had a wall mounted TV and DVD not too high so that he could watch it from his bed if he had stiffened up.
Try to find somewhere on the flat as that was a great benefit.
Hope this helps and does not make bungalow finding seem like a huge task. It was certainly worth it for us and it is good for me that I am now on my own.
Alibee has given you such an in depth answer I don't think I have anything to add! A wet room where we could just wheel mum in was an absolute godsend. Something I did which could have been a problem but luckily wasn't as Mum kept a certain amount of mobility right to the end was to have a wall hung toilet hung higher than normal so we didn't need a booster seat, I don't think they are very hygienic and can come loose. This made it easier for her to use the toilet, especially with a frame but it was too high to wheel a commode over. Good luck, it's a big move but I'm sure you will find it makes life easier. xxx
I agree, AliBee has covered most if not all pertinent points.
If you can anticipate needs rather than waiting for modifications to be done. For example Chris fell out of the en suite shower, which had been fitted prediagnosis, taking his carer with him! So we decided to convert the family bathroom into a wet room but we waited three months for this to be done. So in the end he only benefitted from it for less than a year.
Also hard floors, wood, laminate or tiled are much easier to push wheelchairs on and clean up after any accidents.
Good Luck and keep on keeping on.
Anne
With regard to the bunglalow, we too bought one and the bathroom came with a cubicle shower the sort you step into and close the door behind you. This was great for a few years but then one bank holiday my OH fell coming out tripping over the step and we had to have the paramedics come out. So when the shower started to fall apart we had a walk in shower installed so floor is level from bathroom to shower no doors and he can sit down in the shower and there is plenty of room for me to stand and assist without getting too wet ! I would highly recommend, also if you are redoing the bathroom I would suggest putting in a raised toilet it avoids having to have plastic raised toilet seats and toilet surrounds which in themselves can be a trip hazard. (unfortunately I did not have this done and regret it). Good luck with your move.
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My mum has PSP
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