Hi! I don’t really know where to start … I haven’t been on a forum before.
My husband has vascular dementia … and other problems. I have been his Carer since 2010 although the last few years have seen a marked deterioration in so many ways. I have been coping just about until a few months ago. He has recently developed hearing loss … higher range … so doesn’t hear children/female voices clearly. He has a great hearing aid but recently refuses to use it. This means he can’t hear what I say to him unless I stand in front of him and speak loudly and clearly. If I do that he accuses me of shouting at him.
The problem is he will not listen whenever I talk with him. If I start a sentence he just cuts across what I say with his own orders, opinions, thoughts. As he can’t hear what I say he makes it up and forcefully repeats back to me “you said this” which bears no relation to what I have said. It’s utter nonsense. He does things that he says I have told him to do … which I haven’t, some of which have put me at risk. He thinks he’s always right. If I challenge what he says he just says sorry automatically …without meaning …
He simply never hears me. NEVER … I may as well talk to the door. I am his sole Carer and life with him is hell. I lost my cool with him last night because he would not let me even start a sentence without interrupting. I can cope with his memory loss, his erratic behaviour, and so on, but not this. He just will not listen to me at all. He never ‘hears’ what I say. I feel I have no relationship with him any longer.
I have also made sure that he cannot access electric switches that need to be kept on by securely taping them. I have explained this to him and shown him why I have done it. However last night I eventually went to sleep in my chair last night … utterly exhausted … While I was asleep, my husband went round and turned off all the lights and power points and went to bed. Unfortunately my electronic chair was in the ‘feet up’ position. In order to get out of my chair I had to tip it up and in doing so hurt my back and leg. This is not the first time I have been injured by something he has done.
I have had enough and feel like walking out … I just want to get away from him. I don’t know what to do.
Hi Hilary, welcome to the forum.
A bit more information would be useful to help us give you the best advice as to where to go from here. NO ONE can force you to care if you don’t want to any more. It is very sad, but in the later stages of dementia most people need a team of carers 24/7 to meet their needs and keep them safe.
I’m very concerned to hear that he has hurt you before the recent chair incident. Is he every physically abusive?
How old are you and your husband?
When was he officially diagnosed with Dementia? (Did you know that from that date he was exempt from Council Tax? If not, make sure you apply asap and it CAN be backdated to the day of diagnosis!!
When, if ever, did your husband have a Needs Assessment from Social Services, and you, a Carers Assessment?
Do you own your own home?
Have more than £46,000 between you in savings? (Yes/No)
Thinking of you and I can relate too the hearing issue. My husband is 79 and he too has a Hearing Aid he won’t wear. He struggles to hear what I say but apparently is not ‘deaf’ I ‘mumble’ as do the GP’s Consultants and nurses. I can relate to the mental abuse too.
I think BB can offer much more advice than I can but it does sound as if you are near breaking point and need some help. If your husband is a danger to you and to himself then you need it on file at his GP Surgery. How they actually define’ this is difficult as what you and I would feel is dangerous does not seem to necessarily be deemed so by the medical profession . But I would urge you to keep detailed notes and write to the Surgery.
All I can offer really is sympathy because I am in a similar position to you but with no diagnosis for my husband who has always been a very difficult controlling man. I do intend to see a Solicitor with my notes though at some stage if things get worse. I am also telling the District Nurses that I will NOT take responsibility ofr giving medication beyond a certain point because I will not put myself at risk as he may well lash out if contradicted or reminded to do things like apply his ointment as I am apparently treating him as if he has dementia. I would urge you very strongly to keep detailed notes and then if he does get abusive and you have to call the police you have something to back up your call. ,
Is his cognitive ability more or less intact? If so i’d give him an ultimatum - wear hearing aid or you’ll start divorce proceedings. Obviously want keep yourself safe so I’d have a friend or relative around while doing this.
Thank you for your support and replies Bowling bun et al.
I never thought about physically recording what is happening on my phone. On one hand it seems like a awful drastic way to behave. But what a great idea when it comes down to proving something is/has happening to those who think you exaggerate or make it all up.
My GP does now, as of today, know that I am absolutely at breaking point. They are trying to support me as the relentless stress and events takes a serious physical toll on my body but they seem powerless to do more than that and don’t know what to do.
G-Fraser Thankyou. His cognitive ability is pretty shaky but he knows that not wearing his hearing aids is causing me great difficulties. Divorce is not the answer though! Strangely, divorcing someone who’s aggression or difficult behaviour caused by dementia becomes unreasonable … is not seen as imminent grounds for divorce!! That was not my experience but was an alarming discovery of a friend who was pushed down the stairs by her demented husband.
We had a new ploy today! He took his mobile to Day Care. He knows that he only has to press 1 to reach me on my phone. He spent much of the time doing exactly this asking me when I was going to pick him up. I have now taken his phone off him. I had to smile at this much more easily resolvable problem. Seems like another example of reversion to childhood behaviours.
Yes, there is a phrase used on the forum that of “Elderly Toddler”. I don’t like this term, but can’t think of a better one.
Sometimes, I recommend putting all calls onto answerphone, and then you can choose what to reply to, and what to ignore. Just knowing you can answer in your own time when it suits you can be very empowering.
What about trying written communication instead of spoken? I. e. writing notes to each other
At least that way you’ve a record of what you said/wrote
Or picture cards like children use?
It might be that the visual part of his brain isn’t as scrambled as the rest
Btw, we used to get wound up by my Mum ringing us constantly, now she can’t even press the buttons There’s only been a time gap of 2 months . It’s very sad
Yes, I remember from my law studies that ‘unreasonable behaviour’ does not have to be unreasonable, but just unreasonable for the other person to put up with - but dementia might not be classified as ‘behaviour’ as it is involuntary. It might be worth searching for more recent case law though. There have again been discussions on reforming divorce law, as of the 5 facts that can be used to base a divorce on, unreasonable behaviour is the quick one.
Hi Hilary, lots of good ideas here for coping with someone with dementia. After reading your most recent post it sounds like you’re feeling a bit better.
I wonder if you are listening to him too much!! So when he calls you and shouts your name you don’t have to immediately stop what you’re doing to apease him. No, when he wants something tell him ‘I’m a bit busy now,when I’ve finished what I’m doing I’ll come and help you.’ Then continue with what you’re doing and make him wait.
Remember, too, that time is different for him now …he won’t feel time the way we do. There is only a constant ‘now’ for him, hence the repeated dialling you. And the ‘focus’ of his ‘will’ so to speak - he has nothing else to divert him, so he just goes on and on and on and on, etc. That’s what we have to remember - that reality is different for them, and not to get ‘drawn in’ to what they are experiencing or how they perceive the world etc. Hard to do, but essential, or we become their ‘puppets’ so to speak.
As for divorce, presumably it comes under the same category as divorce for insanity??? Or, perhaps, say, if someone were in a permanent coma?
Most sadly of all, you are now entering a period of ‘premature mourning’ alas, where you are already grieving the loss of the husband you once had. So desperately sad…
So grateful for all your support here. So much accrued wisdom. Thankyou
I look after my husband alone …always have done … from necessity. I have one daughter who lived and works abroad. My other daughter reitterated yesterday that she has enough going on in her own life to find any time to help me and that she needs my help with her children … given willingly I might as as it is my grandchildren that seem to lighten my load. However that ‘too busy’ includes too busy to even listen or notice when I feel upset or in trouble. That also means that she never drops in for a friendly cuppa even though we only live a mile away. My husbands children stopped talking to him or even contacting him when he had a stroke in 2008 and was subsequently diagnosed with dementia. When I questioned this his son told me he preferred to remember him as the active man he was. And that was only at the point when the stroke had robbed him of 35 years of memories and made his walking a bit wobbly. I simply cannot understand how human beings can behave like this …
The resulting isolation and loneliness are two aspects of being a Carer which do plunge me into despair … of having no hope that things will even get a bit better … knowing that they will only get worse and being unable to do anything about it.
Hilary, many of us here have what we call “Helicopter” relatives, that drop in from time to time to tell us what more we should be doing, with no offer of help whatsoever, and then disappear again. Ignore them. They have lost ALL right to be involved with any future care plans.
You need to accept that you need help from someone else, and that means contacting Social Services for a Needs Assessment to find out what your husband needs, and what help is available locally for you, via a Carers Assessment.
Are you claiming exemption from Council Tax on the grounds of “severe mental impairment” (this can be backdated to the date of the initial problem/diagnosis).
Claiming Attendance Allowance?
Your own health, physical and mental, is really important.
Do you use a tumble dryer and a dishwasher?
Have you streamlined the house and garden as much as possible to reduce your workload?
I would also urge you to look at the financial position - both now and ‘later’…ie, when your husband is no more.
The reason I say this is this: Has your husband made a will leaving any of his estate to his children? Although he will, because of his dementia, be unable to change that, I would urge you to spend as MUCH of his money NOW on ameliorating the ‘care burden’ on you, even if that means depleting his estate IF that estate is left AT ALL to his own children! In other words, if his own children can’t be bothered to lift a finger for their dad, but are simply ‘assuming’ that they will get a share of his estate when he dies, then it’s time to help yourself NOW to that estate to reduce what they truly do not ‘deserve’…
Jenny raises an added complication and a “get out” clause at the same time!
A lot of issues around caring are interwoven, and working out what to do is like a journey, and the route you take depends on a number of issues, but finance is THE crucial factor. To avoid bombarding you with too many questions all at one, we can take it step by step.
Do you have Power of Attorney?
Has your husband made a will?
Does his estate pass to you, or his children, on his death?