Travelling problems with Dementia partner

[NannyRos]

Travelling with Partner with Dementia
We had a vert traumatic time travelling to visit family. He said the walk to the train had exhausted him and I really thought of getting off train as he looked so ill. I had to get a cab at the other end costing £60 . He was the ok, but on return when we got off the train went to get my friend to collect him - she was parked round the corner, and he disappeared , finally turned out he had WALKED to another car park. Once in the car he was verbally abusive to myself and my friend. It was so upsetting and embarrasing. He has never been that aggressive before and it was quite frightening. He does get annoyed when crossed now and raises his voice,
The annoying thing is that family and friends who saw him thought he was not bad at all , its as if I have been making things up.
I feel now that I am unable to take him anywhere on the train again, which means that I feel completely trapped as i can't leave him for long at all.

 

[sapphire turner]

blimey that sounds awful- can you get someone to mind him when you go out? Are you getting attendance allowance? I use mine to get a carer to take my husband out two mornings a week, it’s a life saver!

 

[Grannie G]

My husband used to get very confused on journeys @NannyRos He was also exhausted the following day which made me realise the stress the journey had caused him.

I came to the conclusion it wasn`t worth the trouble it caused but our family were local so it made it easier.

Have you thought of trying to get a sitter or befriender to give you freedom to travel by yourself?

 

[Jessie5]

We stopped taking Mum anywhere unfamiliar, it was just too stressful for her (and us).

I second the idea of a sitter for your husband so you can still keep up with friends and family. You can look through a care agency or Age Uk and Carers UK often have free schemes.

Also be honest with friends and family about how difficult it now is to travel with your husband and encourage them to come to you as I’m sure your husband would still love to see them. You could explain to them about ‘host mode’ and that dementia patients are often able to put on a good show for a few hours, but in is an exhausting effort and leaves them further confused.

 

[Jessie5]

Also have a look if any day care schemes in your area. Mum went to one and loved it (after being really resistant at first). I used to see lots of spouses there dropping partners off and they would often be going on to do things they couldn’t with their person with dementia. (Or catching up on sleep!)

 

[Chizz]

Yes, these days family do's, birthdays etc are always at our house, as we can't go anywhere together. I don't mind hosting, and the children and grandchildren usually help etc.
My OH can sometimes find it all too much - many people milling about, noise, laughter, etc from all directions difficult to determine exactly who's saying what etc.
So, I usually get each member of the gathering to go and sit with her to give one to one attention, which is much easier for her to cope with. It's also helpful for them to know my OH and exactly where she's at.
Having a sitter to allow me to go out without worry is invaluable, an absolute necessity,

 

[NannyRos]

Thank you for your helpful replies. Its good to know that I am not alone in this struggle. I will need to get some help at some time in the future. I have one son abroad and the other has a young family in London and I am in north wales, so I am on my own . Problem is that Oh thinks nothing wrong with him .

 

[NannyRos]

blimey that sounds awful- can you get someone to mind him when you go out? Are you getting attendance allowance? I use mine to get a carer to take my husband out two mornings a week, it’s a life saver!

I cannot get attendance allowance as i don't have a complete diagnosis, which is taking forever. He thinks nothing wrong with him and would not take to a carer at the moment. At the moment I do go out and leave him for the odd morning just to keep my sanity .

 

[canary]

I cannot get attendance allowance as i don't have a complete diagnosis, which is taking forever.

You dont need a diagnosis to get Attendance Allowance - it goes on the difficulties you are facing in living, rather than the diagnosis. OH does not have a diagnosis, but still gets DLA (he is under state pension age otherwise he'd get AA). It is easier with a diagnosis, but you can still get it. Get someone like Age UK or Citizens Advice to help you fill it it in as they know how to do it and the buzz words to use.

 

[NannyRos]

You dont need a diagnosis to get Attendance Allowance - it goes on the difficulties you are facing in living, rather than the diagnosis. OH does not have a diagnosis, but still gets DLA (he is under state pension age otherwise he'd get AA). It is easier with a diagnosis, but you can still get it. Get someone like Age UK or Citizens Advice to help you fill it it in as they know how to do it and the buzz words to use.

thank you