Hi I’m new to this forum and not coping at all
Husband had a vascular dementia diagnosis about 22 months ago. I’ve had lots of help and support initially from mental health team and carers trust putting things into place like social worker, attendance allowance, mental health apts etc etc. I’m still working part time and also have childcare twice a week. He has absolutely refused to have carers in to help or respite care so I can have a break. There is no one else who can help as both our daughters have small children one only just born last week so are unable to help. I’m becoming really overwhelmed with it all. He is constantly on my case, always nit picking and winding me up like he’s looking to cause an argument. He’s always been self centred but now it’s 10 times worse. I thought Admiral nurses might help as they are meant to have the carers best interest but jesus all she did was tell me where I was going wrong and make suggestions which made even more work for me and I can barely cope as it is.
I’m literally at my wits end so much so I actually rang samaritans because I needed to offload.
I don’t know what to do, I’m just not coping. He doesn’t help me at all just barks orders or tells me what I doing wrong. He’s not even that bad, yes memory is bad and he doesn’t read or write any more but he could help me out a bit like running the hoover over, putting a wash on, putting the bins out, washing dishes all things he used to do and is quite capable of doing just doesn’t want to as I his words it’s my job as I’m the housewife. It’s got to the point now where I just want to pack a bag and leave.
I don’t want you to think all I’m here for is to have a moan that’s not it He is literally on my case all the time, if he wants me to do something for him that he is more than capable of doing himself he will just keep on an on until I give in even if I’m up a ladder painting, in the middle of cleaning the bathroom, out shopping, collecting his medication doesn’t matter he expects me to drop everything to see to him.
Mum has also recently had a vascular dementia diagnosis which has made it all so much worse as now it’s like it’s a competition as can who can get my attention first.
I don’t know what to do or who to turn to
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I’m very sorry to see how tough things are.
Can I ask how old you and your husband are, and mum?
My husband and I were supporting all four parents and our son with learning disabilities for a few years, I know how tough being a multiple carer can be. My husband died in his sleep a few months after his dad died.
You are not invincible! Does mum own or rent her home?
Do you have Power of Attorney for mum or husband?
Make sure mum claims Attendance Allowance asap, as that means she may become exempt from Council Tax.
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I’m 65
Husband 83
Mum 90
Mum owns her home but took out equity years ago so not sole owner. Dad passed away 14 years ago. Mum’s diagnosis is fairly recent but she’s had a rapid decline. My brother has looked inti LPA but it’s not an option due to her lack of understanding.
I have an LPA for my husband in regards to his care.
Mums decline has been so fast that things like carers etc are needed now but haven’t been in the pipeline long my brother and I are having to watch out for her as she’s not capable of doing some things on her own. She keeps taking herself off on the bus to town and then forgets what she’s there for so wanders around until she gets overtired and falls over. This has happened a few times now. She’s also developed an obsession with money. My nephew went with her to the bank before Xmas. She took out £200 that she wanted to put into cards to give to family as gifts. My brother wrote a list of all the family she needed to do this for, watched her write the cards and counted out the money to put into each one. Sealed the envelopes and told her to leave them until I called on my way home from work. Every single envelope had been opened and the money removed. She doesn’t know why or where she’s put it. Since then I’ve taken her shopping and when it came to pay she didn’t have any money in her purse, so we paid by card and I got cashback for her. Following day £50 gone… God knows what she’s doing with it.
I worry that she will get conned out of money or worse. Thank god she doesn’t know her pin.
She keeps telling me she wants to go in a home as she’s lonely but tells my brother don’t put me in a home
It’s a lot to deal with
Funny how they both have the same condition yet it affects them in totally different ways.
She’s always sorry that she’s a burden and tries to be independent
Hes totally selfish, needy, entitled, expects me to do everything and criticising all I do like I’m never good enough
I was DWP Appointee for mum in law when she had dementia. It’s relatively quick to arrange, then all mum’s benefits are paid to you, to manage on her behalf. You open a separate account in YOUR name but it’s solely for mum’s money to be used for her benefit. Long term, you need to investigate guardianship through the Office of the Public Guardian. Pet, one of our forum members has done this. Take this as my “rough guide”. Carers UK has a confidential helpline to give best advice.
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You have my sympathy. My husband is 85 and I am 62. I have been his carer since Jan2013 officially. He sounds very similar to your husband and I no longer even like him yet alone love him. He has not had a dementia diagnosis but have several co morbidities and I do feel he has frontotemporal dementia. He also is medically non compliant which causes huge issues.
Do you WANT to continue to care for your husband?
Can you financially buy him out? Sadly I cannot afford to do this.
To give you some examples of how selfish husband is he wont use his inhalers so two are now right under his table. I usually pick them up and wash them but he just knocks them off again. I left them there. He dropped a DVD and was on the floor trying to find it but did not bother to pick the inhalers up. He just throws cartons and empty packets onto the floor. Leaves dirty incontinence pads on his bathroom radiator. Says when I try to steal his dirty gown to wash that I am ‘making it up and it is not really dirty’. Also he has brainwashed me for years saying no one will believe me and it is’ his word against mine. Cooking is a nightmare as he burns pans and leaves the ring on.
I stay saneish by getting out when I can. But even then he will say that he is going to phone the GP surgery as feels ill sometimes. I cope by staying local and supplying phone number so I can get back quickly. This does curtail my social life.
I have not given YOU much advice. But I think you have to establish firm boundries. I know you are busy but a good counsellor may be an option? To discuss what YOU want. I totally understand where you are coming from re Admiral Nurses. The Physio at the Pulm Rehab suggested I get Carers in to get him dressed and take him out!!! Issue is with this is that it would make a lot more work as he has continence issues and it is much easier to wash gowns. He does not look when crossing the road and gets out of taxis before the have stopped so he is a risk to himself and others. I do NOT want carers in as he never does things at set times and also I would have to use my pension to pay as his goes to pay household bills. Also I would have to be around to let them in as my idea of hell is a keysafe as it just advertises a vulnerable person lives there.
To put it bluntly I am waiting for him to go downhill to such a stage that he has to go into hospital and then hopefully a Care Home. So please do not feel guilty for your feelings as I totally understand them. I just hope I can manage to outlive him.
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Hi @Tango59 I’d be sore tempted in your position to pack a bag or two and tell him he has a choice: treat you with respect or he’ll have no one to do his bidding. You are NOT a slave.
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@Tango59 Has he always been difficult? If so in my opinion the dementia makes it worse. I also think him being so nasty is because he realises he is losing ‘control’? With a large age difference, the male often gets used to being ‘the boss’ and not treating his spouse as an equal.
My husband came out recently with ‘wives should not go out without their husbands’. Yet he would not interact with Rotary when we joined pre Covid and he has no friends. My friends at the Book Club hate him because to be blunt, he behaves like a Senile Toddler. When he kicks off ’ eyes raised to the ceiling ’ Senile Toddler off again’.
I have to agree with Charles please think of yourself and your options as you do not have to put up with this behaviour.
I see myself as a live in 24/7 Carer now rather than a ‘wife’. Just hoping that I can survive him.
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If mum is saying different things to you and your brother, maybe you could both focus on what she NEEDS instead? Good homes have waiting lists. Some offer respite care. Some have different sections. Where my mum went had people who needed physical care on the first floor. The second floor was for those who had dementia symptoms as well. I was assured that they could cope with anything other than uncontrolled bleeding, until mum died. If mum needs to leave her own home, try to ensure it will be her last ever move.
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@Tango59 Hello and welcome. I’m glad you’ve reached out to share what’s happening and connect with us here. As you can see, we care about each other and do our best to help/suggest/offer ideas and above all we’re empathetic.
Coming up to nearly 2 years since your husbands diagnosis and increased decline in his behaviour must be a looming anniversary that’s pushing all these feelings even more, especially with your grandchildren just being born and you can’t help…I’m sure that’s heart wrenching. Dark on one side and baby-joy on the other. So, first I’m sending some BIG hugs.
My Dad had vascular dementia after a horrible hospitalisation that destabilised his congestive heart failure…the early days of weird episodes were freaky and then afterwards Dad had big mood swings from shouting to crying all with an inability to compute or think very logically…cantankerous was our word and we walked on egg shells for years.
All this to say I was lucky because Mum and I had each other to figure out what to do for the sake of Dad’s safety and our sanity-safety too
May I ask if you have LPA for the finances for your husband? For your Mum?
Do you have good friends you can chat to who are empathetic and understand (ie. don’t try and tell you what to do but actually listen)
A couple of suggestions from me - please feel free to ignore these if you don’t think they’re useful
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The Carers UK helpline could offer you some support to talk it all out - it sounds like their expertise could be helpful as you’ve not had people to chat to who are experts AND listen
For information and signposting, our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm (including Bank Holidays).
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I think the very fact you’ve voiced all this means you’re really burnt out and running on fumes now with no clear solution or support to help you. SO it’s kinda of a self-ultimatum that your brain is making for you…
By that I mean you’re head and heart are trying to protect you and persuade you to look after yourself…So here’s my suggestion on what you can do
Talk to carers UK helpline or carers trust to identify local carer agencies and support - your daughters can’t help given their babies but you - FOR YOU- need a break
Organise carer support for a day and at least one night and stay away for 24 hours to rest AND be able to think away from your husband and mother. Here’s an organisation that facilitates breaks for carers: https://carefreespace.org/
I understand very well that your husband says ‘no’ to carers and respite but the question for yourself is what’s best for you and your safety and sanity…
You can try to explain that to him BUT remember he may not be able to compute things…he may be reduced to a bundle of emotions - fear, uncertainty etc
BUT perhaps he needs the reminder that you have emotions and are human too and need a break…especially if he wants you to continue caring for him…
If 24hours is too much, try for a couple of hours over a few days…but be prepared for the tirade and shouting after each time…he won’t like it…BUT it’s not for him, it’s for YOUR sanity…
We were blessed because Dad ‘complied with our request’ (aka passive aggressive agreed) to have a carer in now and again, or overnight because his love for us to be ok, out-thought his fear or discomfort for having a stranger in the house…
Otherwise the tirades about having a stranger in the house, his ‘embarrassment’ of not being ‘strong man’ still, and his pride could’ve been worse…
I hope something there helps but if not please ignore it…each of our situations is different and only you can choose what’s best
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Continuing the discussion from Hello everyone. What can I do?:
If mum is saying different things to you and your brother, maybe you could both focus on what she NEEDS instead? Good homes have waiting lists. Some offer respite care/taster rooms.
Some have different sections. Where my mum went had people who needed physical care on the first floor. The second floor was for those who had dementia symptoms as well.
I was assured that they could cope with anything other than uncontrolled bleeding, until mum died. If your mum needs to leave her own home, try to ensure it will be her last ever move.
Before anything else, you both need to know what the property is worth, what portion of that would be left for mum when it is sold. Nursing home fees in my area start at around £1,000 a week.
Would the council take over the fees if mum’s money ran out?! You need to establish this before she moves in. Ask if they take Social Services funded patients?
The more you and brother can work through these issues, together, the better. My brother left everything for me to sort out but demanded his share of the estate very quickly after she died!
Think of how to deal with all this as being a bit like a jigsaw puzzle, or even Snakes and Ladders’!
Everyone’s situation will be slightly different, but there is a lot to learn about and think about.
It’s a good idea to have a ring binder to keep all the paperwork in. Write down as much as possible.
Don’t feel guilty, mum is very lucky to have two children near enough to help.
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Huge hugs to you, @Tango59, and welcome to the forum. My husband doesn’t have dementia but I get where you’re coming from. I’m new here too and posted something a day ago. Please know that you’re not alone. There is help out there. Sometimes it takes a bit of tough love to really make them understand that you are not at their beck and call 24/7 and you have needs that you have to take care of for yourself, too.
I’ve found this forum to be a bit overwhelming because everyone wants to help and there is so much information shared. Take your time. Show up when you can. Post whatever you need to and relax. There is no judgment. You are in a safe space.
Take care and take some time for you.
All my best!
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