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Not coping

Janderhol

Registered User
Aug 27, 2019
17
I feel so alone with all the problems around caring for my husband. Although I have good family they are all working full time. My husband will not accept going to a care centre, so I am left doing everything on my own. Am I selfish? This damn illness has escalated so quickly from a fall three months ago to confusion over numerous things, incontinence and sleepless night. Little help available from Social Care without an assessment which could be weeks away. I’m elderly too and have a fear of letting my husband slip while showering as I’m half his weight. Any advice welcome.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,326
Merseyside
Welcome to DTP @Janderhol
You are certainly not selfish! I would ring & chase social services & tell them you can’t cope. Ask for an urgent assessment.
Please keep posting as you’ll get lots of support here.
 

Louise7

Registered User
Mar 25, 2016
2,047
You can also ask your GP for a referral to an occupational therapist. They will visit and provide equipment that may be needed to help your husband to stay safe in the house, including when showering. The GP can also make a referral to the incontinence service.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,712
leicester
Hello @Janderhol welcome to DTP
Of cause you are not selfish and don’t forget you are entitled to a Carers assessment as well..
caring is not easy and you both need support
 

Linton

Registered User
Jul 27, 2019
150
Hi janderhol.. I so sympathise with your situation.. I too felt alone coping with looking after my husband with lewy body dementia and all that entails.. The worst has been the lack of sleep.. With help from this forum and finding out what we could do to help.. And finally getting help from the GP and incontinence nurse things have got a bit better and I feel better able to cope... I hope you find the help you need.. Best wishes...
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,056
Yorkshire
hello @Janderhol
a warm welcome from me too
you are certainly not being selfish ... I hope Social Services respond soon

is there a continence nurse at your GP surgery you could ask for advice/support

I'm worried by your comment on showering ... I do appreciate that you want to keep your husband clean, but you can't be putting yourself at risk trying to help him shower ... you'll be in a real pickle if he falls, you fall and ....
so might you accept just an all over wash with a flannel, the old-fashioned way, until an OT can visit and suggest some aids eg handrails, a shower seat ... dad used to wash sitting on the toilet so he was sitting safely

Admiral Nurses are there to support the carer, here's a link to their website
https://www.dementiauk.org/get-support/admiral-nursing/

keep posting, now you've joined this supportive community you're not so alone
 

Janderhol

Registered User
Aug 27, 2019
17
Thank you all for your useful replies. I will be following much of the advice you have given. At least I don’t feel so alone with getting a response from you all. Thank you.
 

RosettaT

Registered User
Sep 9, 2018
463
Mid Lincs
Hi Janderhol, welcome to TP.

Does your husband get Attendance Allowance? If not AgeUK or CAB can help with the application as it's a bit long and is a bit long winded and it's easy to downplay your situation. It's not means tested tho' there is a qualifying period of 6mths before you can apply.
No you are not selfish. Caring for someone 24/7 is tiring and drains the emotions as well as the body.
Do you get any time to yourself at all? It's important especially if you are lacking sleep. If your husband won't go to daycare, perhaps your family or a friend could sit with your husband for a couple of hours at the weekends or take him out to give you a break once in a while.

Keep posting everyone here understands the problems dementia brings.
 

Janderhol

Registered User
Aug 27, 2019
17
Hi Janderhol, welcome to TP.

Does your husband get Attendance Allowance? If not AgeUK or CAB can help with the application as it's a bit long and is a bit long winded and it's easy to downplay your situation. It's not means tested tho' there is a qualifying period of 6mths before you can apply.
No you are not selfish. Caring for someone 24/7 is tiring and drains the emotions as well as the body.
Do you get any time to yourself at all? It's important especially if you are lacking sleep. If your husband won't go to daycare, perhaps your family or a friend could sit with your husband for a couple of hours at the weekends or take him out to give you a break once in a while.

Keep posting everyone here understands the problems dementia brings.
 

Janderhol

Registered User
Aug 27, 2019
17
I have just filled in a very complicated form for Attendance Allowance. It was fortunate that I’d kept all the hospital and Mental Health Assessment Forms, as these were needed. I’m not sure how long it takes to get a response an this: I know that we have spent a great deal of money on incontinence pants, waterproof mattress covers etc. It’s a double whammy isn’t it al well as the worry with Dementia there is a drain on the limited bank account. Hope I’m right in asking my doctor to give me a low dose diazepam as my head won’t stop whirling with all there is to contend with.
 

Janderhol

Registered User
Aug 27, 2019
17
My husband cried today as he’s having very bad dreams which are translating in his head to reality. I assume these are hallucinations, is there any helpful medication for this? He’s frightened.
 

RosettaT

Registered User
Sep 9, 2018
463
Mid Lincs
I have just filled in a very complicated form for Attendance Allowance. It was fortunate that I’d kept all the hospital and Mental Health Assessment Forms, as these were needed. I’m not sure how long it takes to get a response an this: I know that we have spent a great deal of money on incontinence pants, waterproof mattress covers etc. It’s a double whammy isn’t it al well as the worry with Dementia there is a drain on the limited bank account. Hope I’m right in asking my doctor to give me a low dose diazepam as my head won’t stop whirling with all there is to contend with.
I think it depends on the area but I was quoted 12 weeks tho' they do back date it. My OH's took 16 weeks but there was a hic-up which they sent a letter about but I never received so that added another 4 weeks.
 

canary

Registered User
Feb 25, 2014
12,250
South coast
know that we have spent a great deal of money on incontinence pants, waterproof mattress covers etc.
Has he been seen in the continence clinic (sometimes known as the bladder and bowel clinic)? If not get a referral from your GP to go there. They should be able to provide pads etc (although you may have to "top them up"
 

Janderhol

Registered User
Aug 27, 2019
17
The situation has escalated. My husband has threatened to commit suicide and tried to leave the house after 10 at night. I have now has dementia nurses here assessing him. They are coming again tomorrow. His case is being escalated by Social Care, which may mean he’ll get more help
sooner rather than later. I think they may offer respite care which I shall accept as I’m so tired and low I feel ill. This would help me recharge my batteries as being on red alert day and night has flummoxed me.
 

canary

Registered User
Feb 25, 2014
12,250
South coast
Im so sorry to hear about this development.
You cant cope that all by yourself, please accept what ever help is offered. Your husband needs a lot of help now.
 

katydid

Registered User
Oct 23, 2018
58
The situation has escalated. My husband has threatened to commit suicide and tried to leave the house after 10 at night. I have now has dementia nurses here assessing him. They are coming again tomorrow. His case is being escalated by Social Care, which may mean he’ll get more help
sooner rather than later. I think they may offer respite care which I shall accept as I’m so tired and low I feel ill. This would help me recharge my batteries as being on red alert day and night has flummoxed me.
So sorry to hear this. I am glad you are now get in some help
My husband is now in his 2nd week in a nursing home, and i am finding it heartbreaking that he is “doing his best to like it”. Sometimes just a little knowledge in the person is worse than total oblivion. X
 

Janderhol

Registered User
Aug 27, 2019
17
So sorry to hear this. I am glad you are now get in some help
My husband is now in his 2nd week in a nursing home, and i am finding it heartbreaking that he is “doing his best to like it”. Sometimes just a little knowledge in the person is worse than total oblivion. X
 

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