Struggling to cope

[Lizzy46]

Hello everyone, this is my first forum I’ve ever joined so hopefully I’ve done this right?
My husband is in the middle to late stages of dementia and up to now my daughter and I have managed to cope without any help. But his condition is quickly getting worse and I am finding I’m not coping. He says some very nasty things to me, tells visitors to get out of his house, follows me everywhere, wakes me up 3 or 4 times in the night, then last night I was woke up by a neighbour at 1.30am saying my husband was looking for me! He had gone out bare footed.
I know I need help but I have no idea where to start. Any help would be greatly appreciated.
Thankyou

 

[Shedrech]

hello @Lizzy46
a warm welcome to DTP
I think you've done exactly the right thing in joining this supportive, helpful community

have you had an assessment of your husband's care needs by your Local Authority Adult Services ... if not, that's the way to start ... after the assessment , a care package will be suggested, eg some home care visits, day care. respite, a visit by an OT to suggest aids and adaptions
and you have a right to a carer's assessment too

don't mention your husband's finances when you contact the LA, an assessment his finances only(not yours) should follow the one for care needs
https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care

there's a directory of local services on the main AS site
https://www.alzheimers.org.uk/get-support/your-support-services

Admiral Nurses are thete to support the carer
https://www.dementiauk.org/get-support/admiral-nursing/

and keep posting here with anything that's on your mind

 

[Grannie G]

Hello @Lizzy46

Your husband sounds very much like mine was. It`s hard work and very upsetting isn`t it?

It might help you get things in perspective if you use the information posted by @Sherech in the previous post and try to get some respite care.

A week to yourself may help you realise how difficult your life is and give you the opportunity to catch up on some sleep.

 

[Lizzy46]

Hello Shedrech, thankyou for your quick response. We haven’t had any assessments done, our gp said he would refer us to social services but that was obout 10 weeks ago and we haven’t heard anything yet.

 

[Shedrech]

hi @Lizzy46
I'd suggest contacting yourself as well, it doesn't need a referral by a GP to get things going ... 10 weeks is quite a while, though LAs are under a lot of pressure so not much happens quickly

mention that your husband went out at night, so is a vulnerable adult and putting himself at risk so you need urgent support eg a door alarm

 

[Lizzy46]

Hello Grannie G, yes it is very upsetting and I think the lack of sleep is affecting the way I care for him. I know it’s wrong but I do snap at him when he says nasty things, then I feel bad for snapping.

 

[Lizzy46]

I have been hesitant about contacting them as I didnt want to waste their time when they have so much to deal with everyday.

 

[canary]

I have been hesitant about contacting them as I didnt want to waste their time when they have so much to deal with everyday.

This isnt a waste of their time @Lizzy46 - your husband is a vulnerable adult who is at risk of harm when he wanders outside. It also sounds like you are sleep deprived and you need support.

 

[Bunpoots]

I have been hesitant about contacting them as I didnt want to waste their time when they have so much to deal with everyday.

You're not wasting their time you need the help. I had the same problem of things moving very slowly when my dad got to the mid to late stages and, as he could afford to self fund for a while I employed carers for him after I'd contacted Social Services and at the suggestion of his CPN.

The Social worker had actually agreed with the care agency to settle the bill as soon as the financial assessment was done if he wasn't self funding which he was for the first 2 months. So push for that assessment to get the ball rolling.

 

[dollydee]

You're not wasting their time you need the help. I had the same problem of things moving very slowly when my dad got to the mid to late stages and, as he could afford to self fund for a while I employed carers for him after I'd contacted Social Services and at the suggestion of his CPN.

The Social worker had actually agreed with the care agency to settle the bill as soon as the financial assessment was done if he wasn't self funding which he was for the first 2 months. So push for that assessment to get the ball rolling.

 

[dollydee]

Hello there. Its been a couple of years since I last posted here. It's been a very long slog. My OH is now quite advanced and not capable of doing much for himself. I am still coping alone...8 years since my life ended to all intents and purposes. Of course social services and age/dementia related groups have done their best to help. However, he wont go to respite, which was only 6 hours every 2 weeks, and ungrateful as it sounds, a couple of hours occasionally is no break for me. I have started having unsettling thoughts, and have a pre sleep dream of packing up my car and disappearing over night. Some how this makes me relax for sleep, maybe a slight hope of freedom. Today I fell in the hall due to sheer exhaustion and stress. I'm no longer able to cook, dont eat much at all myself, and give him ready meals. I have lost 4+stones in the last 2 years. I usually forget both our medication.
If this message offends any one, I'm sorry. You must be a stronger person than I am. I'm done.

 

[padmag]

Hello everyone, this is my first forum I’ve ever joined so hopefully I’ve done this right?
My husband is in the middle to late stages of dementia and up to now my daughter and I have managed to cope without any help. But his condition is quickly getting worse and I am finding I’m not coping. He says some very nasty things to me, tells visitors to get out of his house, follows me everywhere, wakes me up 3 or 4 times in the night, then last night I was woke up by a neighbour at 1.30am saying my husband was looking for me! He had gone out bare footed.
I know I need help but I have no idea where to start. Any help would be greatly appreciated.
Thankyou

You have lots of good advice here can I just add why not hide the door keys at night (and day)? I have had to do this for the past 5 years or so, or he would have been off. It's a habit now, I even take the door key with me when I go out to the bin in case he locks me out!

 

[padmag]

Hello there. Its been a couple of years since I last posted here. It's been a very long slog. My OH is now quite advanced and not capable of doing much for himself. I am still coping alone...8 years since my life ended to all intents and purposes. Of course social services and age/dementia related groups have done their best to help. However, he wont go to respite, which was only 6 hours every 2 weeks, and ungrateful as it sounds, a couple of hours occasionally is no break for me. I have started having unsettling thoughts, and have a pre sleep dream of packing up my car and disappearing over night. Some how this makes me relax for sleep, maybe a slight hope of freedom. Today I fell in the hall due to sheer exhaustion and stress. I'm no longer able to cook, dont eat much at all myself, and give him ready meals. I have lost 4+stones in the last 2 years. I usually forget both our medication.
If this message offends any one, I'm sorry. You must be a stronger person than I am. I'm done.

Aaah I really feel for you it is a hard slog I know, my partner is in his eigth year now. He does go to the day centre during the week and is fairly compliant, even so, I am so so tired and often have dark thoughts, then I manage another day in fact only one day at a time. I don't know how you cope without the respite of a day centre care or sitters. Could you try again with respite of some sort to save your sanity? All the best I do hope you find a way.

 

[dollydee]

Aaah I really feel for you it is a hard slog I know, my partner is in his eigth year now. He does go to the day centre during the week and is fairly compliant, even so, I am so so tired and often have dark thoughts, then I manage another day in fact only one day at a time. I don't know how you cope without the respite of a day centre care or sitters. Could you try again with respite of some sort to save your sanity? All the best I do hope you find a way.

Thank you for not judging, and yes, I'm going to see what I can find. Day centre would be great if we can get funded. Thanks again x

 

[Alltalkandnocustard]

Hello there. Its been a couple of years since I last posted here. It's been a very long slog. My OH is now quite advanced and not capable of doing much for himself. I am still coping alone...8 years since my life ended to all intents and purposes. Of course social services and age/dementia related groups have done their best to help. However, he wont go to respite, which was only 6 hours every 2 weeks, and ungrateful as it sounds, a couple of hours occasionally is no break for me. I have started having unsettling thoughts, and have a pre sleep dream of packing up my car and disappearing over night. Some how this makes me relax for sleep, maybe a slight hope of freedom. Today I fell in the hall due to sheer exhaustion and stress. I'm no longer able to cook, dont eat much at all myself, and give him ready meals. I have lost 4+stones in the last 2 years. I usually forget both our medication.
If this message offends any one, I'm sorry. You must be a stronger person than I am. I'm done.

Our limits are our own. I've been looking after my mum full time for 2 years following 6 years of working and caring for her at home. I have reached the limit in the same way you have. I'm not eating well, I'm not sleeping well, I'm not talking to anyone as much as I used to. Same as you say care away from home was a nightmare and she ended up being refused by them. Have not had a rest in my own home for over 5 years and not had a full day off in 3 years. Now I'm trying to look for a care home for her and have been refused by the best one nearby. I have contacted another one that looked nice but they refused us as they didn't accept self funding residents. Right when I need the most help no one seems capable of giving any as no one knows how the system works holistically. I'm so stressed I cry each night worrying about the inevitable argument I'm going to have in the morning over going to the toilet, eating breakfast and getting ready. I have trained myself with everything I can. I've read the books, the forums the articles and spoken to carers to find all the tricks. I'm confident that I have done my best but I've had to admit that this disease doesn't care how much you care. It will take and take and take. At a certain point it takes a team.

 

[Lizzy46]

Hello there. Its been a couple of years since I last posted here. It's been a very long slog. My OH is now quite advanced and not capable of doing much for himself. I am still coping alone...8 years since my life ended to all intents and purposes. Of course social services and age/dementia related groups have done their best to help. However, he wont go to respite, which was only 6 hours every 2 weeks, and ungrateful as it sounds, a couple of hours occasionally is no break for me. I have started having unsettling thoughts, and have a pre sleep dream of packing up my car and disappearing over night. Some how this makes me relax for sleep, maybe a slight hope of freedom. Today I fell in the hall due to sheer exhaustion and stress. I'm no longer able to cook, dont eat much at all myself, and give him ready meals. I have lost 4+stones in the last 2 years. I usually forget both our medication.
If this message offends any one, I'm sorry. You must be a stronger person than I am. I'm done.

Hello dollydee, you have put into words exactly my life at the moment. I always thought I was a strong person but lately I’m questioning that!

 

[Lizzy46]

You have lots of good advice here can I just add why not hide the door keys at night (and day)? I have had to do this for the past 5 years or so, or he would have been off. It's a habit now, I even take the door key with me when I go out to the bin in case he locks me out!

I have never liked having my doors locked, in case we needed to get out quick, but I think your right, I need to start locking it and hiding the key.

 

[Rosettastone57]

Our limits are our own. I've been looking after my mum full time for 2 years following 6 years of working and caring for her at home. I have reached the limit in the same way you have. I'm not eating well, I'm not sleeping well, I'm not talking to anyone as much as I used to. Same as you say care away from home was a nightmare and she ended up being refused by them. Have not had a rest in my own home for over 5 years and not had a full day off in 3 years. Now I'm trying to look for a care home for her and have been refused by the best one nearby. I have contacted another one that looked nice but they refused us as they didn't accept self funding residents. Right when I need the most help no one seems capable of giving any as no one knows how the system works holistically. I'm so stressed I cry each night worrying about the inevitable argument I'm going to have in the morning over going to the toilet, eating breakfast and getting ready. I have trained myself with everything I can. I've read the books, the forums the articles and spoken to carers to find all the tricks. I'm confident that I have done my best but I've had to admit that this disease doesn't care how much you care. It will take and take and take. At a certain point it takes a team.

I'm interested in your comment in this post about a care home not accepting self-funding residents. Most care homes have self funders to subsidize everyone else who has local authority funding. The care home my mother-in-law was in did not accept local authority funders in the first place.

 

[Alltalkandnocustard]

I'm interested in your comment in this post about a care home not accepting self-funding residents. Most care homes have self funders to subsidize everyone else who has local authority funding. The care home my mother-in-law was in did not accept local authority funders in the first place.

It surprised me but they said they have a contract with the local authority and only took residents direct from social services so as she will be self funded I could not apply for my Mam.

 

[Shedrech]

hi @dollydee
your post is in no way going to offend the folk here, we understand
but it does worry me
you sound to be close to or at carer breakdown ... please, if you are at all able to, go have a very blunt chat with your own GP about you ... you badly need support and your GP can make a referral to Social Services ... might some respite time help? .... point out that if you break down you won't be able to look after yourself never mind provide care for your husband
have you had a Carer's Assessment by your LA Adult Services as you have a right to this and some respite may be offered to you, or a sitter/befriender so you can have some time to yourself
as to funding, remember that any financial assessment is on your husband's finances only plus half of any shared savings (the house is disregarded, don't let anyone tell you otherwise)
https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care
I hope your husband is receiving Attendance Allowance, and the exemption from Council Tax