Tearful today

[thebes]

As my previous threads have commented my much loved OH is getting weaker, this time it seems to be a physical decline rather than cognitive. He is becoming unable to support his own weight so transfers, dressing, washing etc are all more of a challenge. At this rate he will be wheelchair dependent very soon. I am sad he has enough awareness to be anxious about this, both for its limitations for him, and for the impact on me. I know I have dreaded him needing a wheelchair as due to some problems with my legs I find it hard to push for long, or up slopes.
So todayI have been awake since 4am and not able to shift this tearful mood. I am very worried that in a few months or even weeks, I will be finding it too hard physically to cope We have been waiting weeks for an OT assessment, I am told everyone on the waiting list is urgent so no early advice or support from there. I have good support from family at the weekends and carers come every morning but obviously cannot be there every time he needs to move around or be changed. He needs help with every aspect of his care.
Our GP reviewed him this week and found him noticeably weaker, specially his right arm and left leg, and wondered if he has had tiny strokes, although my OH has no history of BP problems; he has ordered a brain scan which may help diagnosis but I can't see it helping practically.
Sorry to moan, thanks for being there.

 

[Izzy]

I'm so sorry to read that Thebes. No wonder you're tearful. Is there any way the GP might be able to speed up the OT referral?


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[thebes]

Thanks, Izzy. No the OTs are overwhelmed apparently, I have tried through the GP, the lovely social worker who is just redoing our needs assessment, and the local AZ adviser! And there are no private OTs either, which is a pity as I would willingly pay for someone to visit and give the professional advice I think we need. We could then possiblyget equipment which could help, the family would help fund anything to make life better for us. It is so frustrating not being able to do anything, I know my upset feelings about this continuing loss feed my frustration and indeed anger! Need to go and punch a pillow

 

[Grannie G]

Hello thebes

I remember this happening with my husband although he had a cognitive decline too and forgot he needed help standing and walking which resulted in falls.

Your husband`s difficulties sound different to those of mine but the stress and upset you feel and I felt are very much the same.

When my husband got his wheelchair I found it very heavy to push and it did affect my back so please guard your own health carefully.

I do hope you can get an OT assessment soon . At least you will feel you are being supported.

 

[Lilac Blossom]

Dear Thebes, please don't feel that you are moaning. Seeing deterioration in the loved ones we care for is so hard to bear - no wonder you are tearful.

My hubby had poor mobility before dementia invaded our lives and now that he needs help with everything it is really hard work so I understand that aspect too - lying awake and thinking about it at 4 am is not good at all.

As your GP has seen hubby recently I expect UTI has been ruled out but I would keep contacting him/her expressing the urgency of the situation as you struggle to manage to cope with increasing demands. Do you have contact with district/community nurses? They might be able to get you an appointment sooner.

I had to stop taking hubby out in wheelchair when I injured my back so I would caution you regarding this for the sake of your own health. It's good that you have family support at weekends so, if it comes to that (I hope it doesn't become necessary), would they take hubby out in wheelchair?

Lilac xx

 

[esmeralda]

So sorry you are having such a hard time getting an OT assessment thebes, it's really vital for you and shocking there are no ways to speed this up or access alternative routes to a service. Like your husband mine is very aware of his increasing limitations and it's so sad to see.
Do you have any aids for him at home? We've recently got a Sara Steady. I know I keep going on about it but it is a marvellous aid to safely transferring and transporting someone. May be hard on you physically though and the user has to be able to pull him or herself up to standing, but once upright(ish) there are paddles that can flip back to provide a seat.
Thinking of the future is very frightening, I hope you're able to put your fears aside for a little while and get some sleep tonight.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Shedrech]

Morning thebes
Sorry you have been feeling so down
I just found this and wondered if it was of any help - expensive, I'm afraid
http://www.careco.co.uk/item-s-WC09002/rascal-we-go/rascal-we-go-electric-wheelchair/?search=WEGO
best wishes

 

[thebes]

Thank you all for your support and ideas. Thankfully with the help of family I got myself back on an even keel yesterday and then slept well. To make it even better I have just been phoned by the OT team and one of them will visit us this Wednesday. HOORAY! . At last I feel that whatever is suggested has a sound basis in relevant professional training. The big issue seems to be what equipment is safe and effective for someone whose ability to support their own weight is quickly diminishing. I will let you know the outcome.
Another comment I have now heard several times is that while physio would probably help it is hard to do it effectively with someone who has AZ, and so is not worth referring. Any thoughts on that one?

 

[nae sporran]

Another comment I have now heard several times is that while physio would probably help it is hard to do it effectively with someone who has AZ, and so is not worth referring. Any thoughts on that one?

OH had physio last summer and it definitely helped to get her moving again for the summer. Problem was in motivating and guiding her through the excercise afterwards. She is now blaming the physio for her sore legs. So, not sure if I would recommend it for anyone with dementia despite initial success.
Sorry that is probably not very encouraging Thebes. Best wishes to you and your family.