Of help for dementia suffering cyclists

[merseymouth]

Hello again, Sadly sometimes there is no answer! Dementia at it's root takes away the person we know so well, when the very things that made them what they were become beyond their safe control? Often the first thing which becomes intolerable for sufferers & carers is the issues arising from driving, or more precisely being deprived of the free movement which they are so used to having. I experienced this with my own father, he thought we were ganging up on him! The fact that he had spare keys hidden away was problematic, so that even when we took him somewhere in his own car, he would try to drive away behind our backs! A pedal cycle can be very much the freedom route! But we know that it is not just their safety at risk, but that of everyone else?
When I took him over to Ypres to see where his own father fought in WW1, on a coach with the RBL, he would just veer off into the path of any passing traffic. Scary.
But surround them with familiar events, go through the photo albums to recall past events & places. Try to fill their time with what they loved before the curse came. They may not have the freedom to cycle, but maybe they can feel they freedom that they always knew? Keep strong. TTFN MM

[ukdodger]

Hello again, Sadly sometimes there is no answer! Dementia at it's root takes away the person we know so well, when the very things that made them what they were become beyond their safe control? Often the first thing which becomes intolerable for sufferers & carers is the issues arising from driving, or more precisely being deprived of the free movement which they are so used to having. I experienced this with my own father, he thought we were ganging up on him! The fact that he had spare keys hidden away was problematic, so that even when we took him somewhere in his own car, he would try to drive away behind our backs! A pedal cycle can be very much the freedom route! But we know that it is not just their safety at risk, but that of everyone else?
When I took him over to Ypres to see where his own father fought in WW1, on a coach with the RBL, he would just veer off into the path of any passing traffic. Scary.
But surround them with familiar events, go through the photo albums to recall past events & places. Try to fill their time with what they loved before the curse came. They may not have the freedom to cycle, but maybe they can feel they freedom that they always knew? Keep strong. TTFN MM

Excellent advice from someone who knows. Thanks.

[thirdcrank]

... Yes I can see the problems. On a parallel with a taking a child on the road. Dont know what the answer is.

Don't let the absence of an easy answer deter you from trying to find one. I say from personal experience with my mother (who will be 95 this week and a memory span of a few seconds for current stuff and a long-term memory which now retains little which happened after 1925) that keeping going with what can be dome, helps keep going. Physical exercise is known to be beneficial to the brain as well as the body.

I'm a long way away, so I can't offer much more than encouragement but don't be deterred. Once somebody is largely confined to a chair, the deterioration tends to be dramatic. Good luck with this.

[Vorpal]

If he can still ride with his son, perhaps his behavior on the road is okay. Not all dementia sufferers become so unpredictable that they will wander into traffic or something. I expect that the family has a better idea of what he is capable of. On the other hand, it's probably a lot to expect of a stranger or volunteer to take someone out on a ride without knowing him well.

There, may, however, be some solutions locally. Something like accessibility, or all-ability rides, which may be run by a local charity for cyclists with special needs might help? Such things are often established for cyclists with other issues such as MS or wheel chair users, but I don't see any reason why that couldn't include a dementia sufferer, if the ride leader was aware of the issues.

Similarly, it may be possible to find another carer who would be willing to do an exchange or shared rides, or use a paid carer who is willing to cycle with him? I think there are various alternatives possible, and this should probably be discussed with his GP, or specialist. S/he may even know someone who might be willing and able to help.

[ukdodger]

If he can still ride with his son, perhaps his behavior on the road is okay. Not all dementia sufferers become so unpredictable that they will wander into traffic or something. I expect that the family has a better idea of what he is capable of. On the other hand, it's probably a lot to expect of a stranger or volunteer to take someone out on a ride without knowing him well.

There, may, however, be some solutions locally. Something like accessibility, or all-ability rides, which may be run by a local charity for cyclists with special needs might help? Such things are often established for cyclists with other issues such as MS or wheel chair users, but I don't see any reason why that couldn't include a dementia sufferer, if the ride leader was aware of the issues.

Similarly, it may be possible to find another carer who would be willing to do an exchange or shared rides, or use a paid carer who is willing to cycle with him? I think there are various alternatives possible, and this should probably be discussed with his GP, or specialist. S/he may even know someone who might be willing and able to help.

Cheers. A paid cycling carer is an idea. Even two at once. Depending on what it would cost. Thanks for the other ideas. I might approach the local CTC. They may have others with the same problem.

[ukdodger]

... Yes I can see the problems. On a parallel with a taking a child on the road. Dont know what the answer is.

Don't let the absence of an easy answer deter you from trying to find one. I say from personal experience with my mother (who will be 95 this week and a memory span of a few seconds for current stuff and a long-term memory which now retains little which happened after 1925) that keeping going with what can be dome, helps keep going. Physical exercise is known to be beneficial to the brain as well as the body.

I'm a long way away, so I can't offer much more than encouragement but don't be deterred. Once somebody is largely confined to a chair, the deterioration tends to be dramatic. Good luck with this.

Thanks. At least you have longevity in your family.

[Vorpal]

Cheers. A paid cycling carer is an idea. Even two at once. Depending on what it would cost. Thanks for the other ideas. I might approach the local CTC. They may have others with the same problem.

It may be worth trying other local cycling clubs, too. Or local cycling Facebook pages.

[hondated]

Ukdodger try east Sussex ctc

[531colin]

................... Once somebody is largely confined to a chair, the deterioration tends to be dramatic.......

It has to be the family's decision, but if you accept that inactivity is the worst possible thing for the sufferer, it puts things into a different perspective.
The family could, for example, take the view that they will take the sufferer cycling on a Sustrans track, and if he has an accident then they will deal with the resulting injuries......in the absence of motor vehicles, any injuries are likely to be much less significant. An in-attentive cyclist is probably no more danger to other path users than the general run of dogs, kids, and electric wheelchair users.

Paid carers working for an agency will be restricted by risk assessments and stuff like that.

Disability cycling organisations are worth looking at.....one local landowner made his private estate tracks available.

[ukdodger]

................... Once somebody is largely confined to a chair, the deterioration tends to be dramatic.......

It has to be the family's decision, but if you accept that inactivity is the worst possible thing for the sufferer, it puts things into a different perspective.
The family could, for example, take the view that they will take the sufferer cycling on a Sustrans track, and if he has an accident then they will deal with the resulting injuries......in the absence of motor vehicles, any injuries are likely to be much less significant. An in-attentive cyclist is probably no more danger to other path users than the general run of dogs, kids, and electric wheelchair users.

Paid carers working for an agency will be restricted by risk assessments and stuff like that.

Disability cycling organisations are worth looking at.....one local landowner made his private estate tracks available.

What local landowner 531?

[531colin]

After all this time I can't remember if it was Ripley or Mountgarret Estate.....but its North Yorkshire!

[ukdodger]

After all this time I can't remember if it was Ripley or Mountgarret Estate.....but its North Yorkshire!

Thanks anyway

[Vorpal]

It might be worth considering contacting charities that might be in a position to help, as well. Dementia UK is one possibility. Charities like Mencap sometimes support cycling groups or events for disabled cyclists. Maybe you know of others, or could try google (other search engines are available ) to find charities in your area.

[DaveP]

I would have suggested Charlotte's Tandems too, as a source of information if nothing else. Don't overlook the fact that there are now companies specialising in bikes for assorted special needs - there was a big display at the last bike show I went to. If you can identify them, they may be able to point you towards suitable groups.
But don't get bogged down in the idea of cycling. Don't wait too long. Start taking him and his wife for outings of any sort as soon as possible. Things are only going to change in one direction. When my father started needing help because of his developing dementia we had it all planned. We were going to help him have as full and interesting a life as we could. It never happened. Things came up, things changed, and we were constantly on the back foot. we had virtually no free time for a couple of years - we took care of him in his own home but we never managed to take him anywhere. I still feel a certain shame about this, but at least I have the consolation of knowing that we tried our hardest and that he knew we where looking after him.
So if you think it would be nice to go and have a look at... or visit... do it on as many wheels as it takes but do it sooner!
Best wishes

[ukdodger]

I would have suggested Charlotte's Tandems too, as a source of information if nothing else. Don't overlook the fact that there are now companies specialising in bikes for assorted special needs - there was a big display at the last bike show I went to. If you can identify them, they may be able to point you towards suitable groups.
But don't get bogged down in the idea of cycling. Don't wait too long. Start taking him and his wife for outings of any sort as soon as possible. Things are only going to change in one direction. When my father started needing help because of his developing dementia we had it all planned. We were going to help him have as full and interesting a life as we could. It never happened. Things came up, things changed, and we were constantly on the back foot. we had virtually no free time for a couple of years - we took care of him in his own home but we never managed to take him anywhere. I still feel a certain shame about this, but at least I have the consolation of knowing that we tried our hardest and that he knew we where looking after him.
So if you think it would be nice to go and have a look at... or visit... do it on as many wheels as it takes but do it sooner!
Best wishes

Thanks. It's a terrible disease affecting everybody. At least you did your best.