Newish here, been reading a few of the posts and just wonder how anybody manages. Feeling a bit perplexed now as yesterday I just sat and wanted to cry, just don’t know why.
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@K47t Welcome from me. I can well understand you having a day when you felt tearful - most of us can relate. Caring is so isolating and so hard. Would you like to tell us a little more about your circumstances?
I think we find our own ways of coping but it is hard. I can ‘escape’ for short periods and do try to meet friends for a coffee. I have my beloved cats plus I am an avid reader. But my life is not as I would have planned it and there are so many restrictions and compromises plus I am always subject to my husband’s needs and ‘whims’. I try to count my blessings as I have relatively good health and my husband is 85 with co morbidities so I make no apologies in saying that I just hope it wont go on for much longer.
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@selinakylie Thank you. I care for my husband when I am not working. I manage to still work during the day, but I am never sure how much longer it will last. My husband is 78 and has been diagnosed with Lewy Body Dementia with Parkinsonism. Mostly he is fairly stable, but recently there have been occasions when he has been incontinent, and he also has a fixation on money. He originally had £40 a week as we used to go to a local club where he paid for the drinks with cash. That went up to £60, then £80, and now £100. If he does not get it he gets verbally aggressive. If he thinks he has not been given it he insists that he gets double, even if I know he had it the previous week. He just does not believe anything I say. To keep the peace I just pay it. Problem is he doesn’t even use any of it unless he is paying to have his hair cut. He has 2 wallets, one storing the excess and the other which he keeps on his person when we go out. I have tried multiple times to get him to just leave the money in the bank, but he is convinced they steal his money. Despite that I often give him the money for him to just pay it in at the bank when we go downtown at the weekend. Is it going to end?
He also has angina, and his daughter is at the moment not really communicating with me. I have no idea what I have done wrong, but it is hard doing everything myself.
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Do you have Power of Attorney?
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Yes, but it is easier to give him the money from our joint account than weather the arguments and accusations.
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Hi K47t
I think your situation sounds v hard.
It feels like the illness is in control.
Somehow you need to be safe and him stop taking so much control.
Could you GP advise you?
Do you need to leave to a place of safety.
I feel concerned for you and hope you can get help, this is too much for one person.
Sending strength Ula
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@K47t I do not know if you know about the Dementia UK Forum? It may be worth checking it out? I can understand you giving him money to avoid arguments but if it is money you have earnt it is wrong. Also keeping a lot of cash in the house is not ideal? Sadly dementia tends to be progressive so things will only get worse. Do you have any outside support? Any friends or relations ? Do you WANT to stay in the relationship? No one deserves to be unhappy. If you think leaving may be an option, then talking it through with a solicitor would be a good step. You do not HAVE to care and cannot legally be made to do so. I cannot leave financially due to the cats so have to try and stick it and he is 85 now.
I have to agree with Ula - your husband sounds very controlling. My husband does not have a diagnosis of Dementia. I think in his case aging and dementia has exadgerated his negative characteristics - he has always been controlling but has got much worse.
@K47t Hello hon - BIG hugs
I’m glad you’re sharing and posting here. I hope you feel less alone now you’re connected.
Sometimes our bodies know things before our head has realised it.
Crying is natural and helps us know that things are NOT good or right…things are just too much that it all spills out…
As @Ula says his illness is in control. As far as I’m aware Lewy Body Dementia with Parkinsonism leads to behavioural-character changes as well as paranoia and other cognitive, mental health issues. So there’s no way (again only from what I am vaguely aware of) that you can reason with him or that he will ‘see reason’.
You’re dealing with someone who can’t rationalise, think or be self aware. Without clear thinking and words there’s a lot of emotion.
I don’t mean this as a lecture or education, the reality is everything you’ve shared. I wanted to share a little of what I know because I want YOU be absolutely clear there’s nothing that you’ve done wrong, and nothing that you can explain or do to counter what he’s thinking….
You’ve been doing amazing things to keep him safe and I’m sure he wants to appear normal paying for drinks at the club…
my dad (passed now) but with vascular dementia shouted at my Mum when he couldn’t pay and blamed her for him being embarrassed in front of people…twisted frustrations, even with a medical condition is still verbal abuse and hurts like 
At the time it was more proof to me that they needed my help moving forward
I went along with Dad’s thinking - easier and less stressful for all of us. It’s also the advice I’ve heard from many dementia experts to avoid arguing reality.
It may be good for you to talk to an Admiral nurse - for your sanity and to soundboard potential actions/plans moving forward.
How to keep yourself safe, what in his best interests AND yours…etc,
You can also talk to Carers UK helpline of experts they can advise on money, benefits, support
We’re all here for you.
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@Ula, I have people around me, but all our family live in Kent. We do not want to move as we like our current residence and have very good neighbours.
@selinakylie, I do have access to the Dementia UK Forum, and Alzheimers.org. The money is both of ours, just that as I am still working there is a bit more of my money in there than there is his. We still have bills to pay, and I can see the energy bill being very high this year as he is always cold. I do love him very much even though it hurts with what is happening. I suppose he has always been controlling, but I have just gone with it.
@Victoria_1806 Thank you for your words of wisdom. You are very correct with your view of Lewy Body. It easier to give in, and then wait for the money to be paid back into the account. I do try to keep myself safe, but tend to let him be the lead. I am scared of talking these things through, and I have had access to a counsellor which helped.
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You are doing your best day by day, I wonder how you cope, you must be very strong,
Warmly Ula
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Hi i too am so sorry that you are finding it tough at the moment. my partner has PD too and dementia with it. i had to give up work approx 3 years ago.
PD and dementia makes them so unpredictable both physically and mentally. the meds often make people obsesive about things.
On top of the responcibility we get to watch someone we love change and struggle, we lose the person we knew.
Does you husband halucinate? i find that is when i am disbelieved when my partner is halucinating and cant believe they are not really there. topics in the news also catch his attnetion like the talk of scams currently
have you had contact with a PD suport group. i find the company of others caring for someone with PD very helpful as we all bring something to the table and understand the kind of issues eachother has.
that help and understanding is so good for me as they understand what i am talking about
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Hello k47t. Sadly, people with various forms of dementia usually exhibit various forms of behaviour, e.g. depression, irrationality, forgetfulness, etc.
I am trying to understand more clearly the money situation, because I think I may have one or two practical suggestions.
From what I have read, it seems that you and your husband have a joint bank account. I presume your own salary is paid into it. Does your husband have any income of his own, e.g. pension, paid into it? Do you have a savings account of your own in a bank or building society or other?
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@denis_1610, Yes, ours is a joint bank account. We have various accounts some of which are joint and some which are either his accounts or my accounts. I do not have a savings account per se, but both my salary and his pensions are paid into the joint account. Some money then goes to the bills accounts and a couple of the savings accounts. The bills account then pays the monthly bills and some more money is then moved into more savings accounts. It can get a bit complicated.
I really do not want to start messing about figuring how much of my income and how much of his income would be needed to cover the bills and the separate savings accounts.
@everyone Thank you for all of your comments so far, they have been helpful, and saved my sanity.
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@K47t You have my sympathy. Due to age difference I do not want to touch my private pension- just take a little out for big bills but make sure way under taxable limit. I need it to grow. So HIS pension and private pension pays for the bills to keep house running and the cats upkeep. I only get a small Civil Service pension and Carers Allowance. I see his pension as partially ‘my’ money as it pays for him to stay in the house which is in MY name. A home in this area would cost way above his pensions. I do not want a financial assessment as I am pretty sure they would say I have to pay half upkeep of house and cats and this is a double whammy. Even if I had carers in an hour a day the other 23 hours I would have to look after him so looking for a part time job would be very very hard. Also a Keysafe is my idea of hell as it advertises a vulnerable elderly person lives in the house. So I have total sympathy with where you are coming from.
At the risk of sounding hard best thing for me would be for him to go into a Home as it may be getting near the stage where he needs 24/7 care. Yes I know it would be a huge fight especially as his income drawdown private pension will run out in around 2 years. But at least then I would be free of him - carers for me are the worst of both worlds. Making me use my pension to pay for them yet me having even less freedom than I have now.
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Hello again, K47t. From your most recent reply you are clearly well organized with your banking arrangements. However you do not want your husband to be carrying around large amounts of cash; neither should you keep large amounts of cash at home.
It seems that you already have a solution, albeit a slightly bizarre one. It sounds as though you give your husband too much cash, at his request, but this is then paid back into the bank at the weekend (preferably into a savings account that offers some interest).
I did at one time think of suggestion that you deceive your husband by exchanging the contents of your husband’s “excess” wallet with fake notes and banking the real ones. However this would cause problems if he were to try to spend the fake notes.
I could be that your husband receives a sense of security from taking out these amounts of cash beyond his real needs. If you can find a way of going along with his feelings, while avoiding the problem of excess cash around the house, then this is fine. It sounds as though you already have a practical solution.
Don’t see this as giving in to his controlling behaviour. Do see it as managing his mental disability, to the benefit of a happier living environment for both of you.
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