Declining mobility

[Tabby Mog]

My husband David was diagnosed 5 years ago with atypical dementia - a mix of Alzheimer's and Vascular. His short-term memory is non-existent but he is still very sociable, loves chatting to people, especially children (he was a teacher all his working life), and can still hold a perfectly good one-to-one conversation. He still has empathy and gets upset if I am upset and has quiet acceptance of what is happening to him. In many ways he is very easy to deal with compared to a lot of what I read on TP, but the biggest problem is his gradually declining loss of mobility. We live in a four-storey terrace house with narrow stairs and all the facilities on different floors, and 7 steps up from the front door to the road. (The occupational therapist has put in extra bannisters and grab rails where possible.) He enjoys my taking him out, or bringing friends round to chat to him, but otherwise now does very little apart from reading, watching the TV or listening to music. He spends hours sitting in the chair and sleeping, so his muscle tone is inevitably decreasing. Getting about is getting progressively more difficult and he has seems to have phases of losing his balance and toppling forward. He will not do the exercises that the physiotherapist recommended. I have got him a walker and a wheelchair that I keep in the back of the car and have used in level places, but want as far as possible to maintain his walking ability.
Has anyone else had this mobility problem, and how did they deal with it?

 

[esmeralda]

This probably sounds really extreme, and may be impossible, but is there any chance of you moving house now to a bungalow? It would be so much easier while he isn't too disabled. My husband has had declining mobility for years and we moved here from a three story Victorian house about 7 years ago. I am so very glad we did. People said we could put a stair lift in at the old house but although it might have helped for a while, for the past couple of years it would have been impossible to transfer him into it and unsafe.

Sadly, things are only likely to get worse and I know how hard it is to be prepared mentally for that. I went through the process of thinking that the mobility problems were due to wasting muscles and dragged him off to physiotherapists and chiropracters but it didn't do any good, and he wouldn't do the exercises either, but now I don't think they would have made a significant difference.

I know it's tough to hear and no two people are the same but my husband is now unable to do anything for himself, has to be hoisted etc., but at least he can be moved from room to room easily so he can join in with whatever's going on. We were just lucky that the bungalow we chose has a big hall and bathroom. He has a large chair he spends the day in and that can easily be manouevered around, and the bathroom has been changed into a proper wetroom (no lips to get into the shower as there are on some which are labelled 'level access'). I hope I haven't frightened you, your husband may not deteriorate to this stage but it is best to be prepared. I'm glad you have found Talking Point, there's such a lot of help and support here. Very best wishes, Es
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Grannie G]

Hello Tabby Mog

I found it impossible to slow down the development of immobility so I hope you have a better experience. My husband`s progression seemed similar to yours.

It started with periods when he was just unable to get up from the table after dinner. It was as if his body didn`t know what to do. Then his balance was affected and there were a couple of times when he fell backwards.

The next stage was when his feet moved on the spot but didn`t move forward.

Prior to this time , during winter months when it was difficult to get out, we both exercised at home to a DVD. My husband enjoyed this .

After a while, he complained he was feeling dizzy when exercising and then he kept putting it off till `tomorrow` so I can relate to your husband being unwilling to do his physio.

Your husband has done well still being able to use the stairs. We are in a bungalow and our mobility problems also began around five years following diagnosis.

I`m sorry to sound so negative . It is probably the progression of the dementia and almost impossible to delay.

 

[DMac]

Hello Tabby Mog, and a warm welcome to TP.

Yes, I've had experience of mobility issues with my father-in-law (FIL). He didn't persevere with his physio exercises, and with his dementia, it was nigh on impossible to persuade him even to try. The inevitable happened and he just got progressively less mobile over time.

When his mobility became too bad, he was able to live solely downstairs in his house, where there was access to a kitchen sink for strip washes, a downstairs loo, and a profile bed in the front room. The room had a hard floor - useful for mopping up spillages! He was also able to stand holding on to a frame whilst being attended to. When using the loo became too difficult, he had a commode in his room. These aren't so bad as they can be discreetly covered when not in use. Also, his carers used to bring in water in a washing up bowl to give him a strip wash in his room.

This was far from an ideal situation, but it was a work-around.

Please post again to let us know how you are and how things are progressing.

 

[Tabby Mog]

This probably sounds really extreme, and may be impossible, but is there any chance of you moving house now to a bungalow? It would be so much easier while he isn't too disabled. My husband has had declining mobility for years and we moved here from a three story Victorian house about 7 years ago. I am so very glad we did. People said we could put a stair lift in at the old house but although it might have helped for a while, for the past couple of years it would have been impossible to transfer him into it and unsafe.

Sadly, things are only likely to get worse and I know how hard it is to be prepared mentally for that. I went through the process of thinking that the mobility problems were due to wasting muscles and dragged him off to physiotherapists and chiropracters but it didn't do any good, and he wouldn't do the exercises either, but now I don't think they would have made a significant difference.

I know it's tough to hear and no two people are the same but my husband is now unable to do anything for himself, has to be hoisted etc., but at least he can be moved from room to room easily so he can join in with whatever's going on. We were just lucky that the bungalow we chose has a big hall and bathroom. He has a large chair he spends the day in and that can easily be manouevered around, and the bathroom has been changed into a proper wetroom (no lips to get into the shower as there are on some which are labelled 'level access'). I hope I haven't frightened you, your husband may not deteriorate to this stage but it is best to be prepared. I'm glad you have found Talking Point, there's such a lot of help and support here. Very best wishes, Es
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Thanks for your reply Es. Moving was something that we did talk about but David absolutely loves this house and won't even consider the prospect. We have been here over 40 years, he has always been a hoarder and the prospect of dealing with the shedsful of stuff we have, as well as his studio and all his artwork, fills me with horror.
Given too that bungalows in the area would be out of our price range is a further deterrent. If he does become confined to one room, then maybe things will change, but until that happens, I think we will be very much fixed here.

 

[esmeralda]

I can absolutely understand what you're saying Tabby Mog - would there be any chance of extending the property to put a wet room on the ground floor? Bungalows are expensive, and you would get a lot less room than you have now. I do hope you can find a way round the difficulties.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Clunchman]

I found it impossible to slow down the development of immobility so I hope you have a better experience. My husband`s progression seemed similar to yours.

It started with periods when he was just unable to get up from the table after dinner. It was as if his body didn`t know what to do. Then his balance was affected and there were a couple of times when he fell backwards.

The next stage was when his feet moved on the spot but didn`t move forward.

Prior to this time , during winter months when it was difficult to get out, we both exercised at home to a DVD. My husband enjoyed this .

After a while, he complained he was feeling dizzy when exercising and then he kept putting it off till `tomorrow` so I can relate to your husband being unwilling to do his physio.

Your husband has done well still being able to use the stairs. We are in a bungalow and our mobility problems also began around five years following diagnosis.

I`m sorry to sound so negative . It is probably the progression of the dementia and almost impossible to delay.

Thank you for your post GrannieG. That is a clear description of my wife's mobility problems, and seemingly daily getting worse.

 

[marionq]

Mobility is an Increasing problem with my husband as the surgeons wouldn't do a knee replacement. They correctly said he couldn't cope with the exercises needed and that the anaesthetic might exacerbate his dementia.

I'm sure they were right but he is either on two sticks or the wheelchair with only worse to come.

In his head he wants to be active and tells me he is going to xyz but the reality is that he cannot go anywhere without me. Going to daycentre gives him some company and allows me to move around at a normal pace.

 

[Tabby Mog]

I can absolutely understand what you're saying Tabby Mog - would there be any chance of extending the property to put a wet room on the ground floor? Bungalows are expensive, and you would get a lot less room than you have now. I do hope you can find a way round the difficulties.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Unfortunately, because our house is built on the side of a hill, there's absolutely no space to extend the main living room or put in a wet room. I imagine that as he becomes less and less mobile he'll become confined to the main living room and we'll have to use a commode and strip washes. Not an ideal prospect.

 

[esmeralda]

Your house sounds lovely but I'm sorry it's so difficult to adapt. One way or another we find a way to live with the circumstances, but it will make it harder work for you. I hope you will find it helpful to keep reading and posting on TP. Big hug.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx