congratulations on your wedding anniversary. dont apologize for having a moan, this is what this is here for. it isnt a competition, its hard going at times so take the support.
Am I being taken for a mug
- Thread starter Skylark/2
- Start date
I feel really sorry for your predicament. I don't think family can handle parents that have dementia. My husband is scary and volatile but I don't tell our children because I'm afraid it will push them away. We haven't got a lot of money but I too like helping our children when we can. Saying that could you use some of your money on making your life better? Is it possible to go away for a few days with the help of paid carers? Hope I'm not saying the wrong thing? It's just that we need to take care of ourselves too.
What do you do when your husband is in bullying mode? Do you always appease him? Have you tried telling him that you are going out again until he is in a better mood and then doing it?
Hello Violet Jane,
To be perfectly frank, I try and appease him, apologise ( don’t know what for, because he demands, I give in etc., ) because I don’t like confro ration and when that doesn’t work I take a walk. Sometimes he’s calmed down when I return but quite often he carries on even if I go into another room. He has always been like this but of course now he has Alzheimer’s the temper is getting worse. I’m not perfect, occasionally I loose my temper too, after 53 years of marriage, listening to his accusations, waiting for ‘ the storm ‘ to break gets very wearing.
Don't apologise - it is so hard to adjust to the challenges of being a carer for someone with dementia. I am so glad that you are going to 'break out' and start allowing yourself to have a life. I have been in a similar situation, my husband sucked the life out of any social event for years, I was so tired of trying to manage his relationships with family and friends. Now I don't even try, it was hard to give myself permission but oh how I wish I had done it years ago!!!!
So how about taking a walk as soon as he starts being annoying? The best way to avoid confrontation is not to engage in the first place. OH used to really bully me until I decided I wasn’t going to tolerate it anymore. As soon as he started, I would walk out and go for a walk on the beach, meet a friend for coffee, or do some shopping. I went back when it suited me not him. The first time I did it, he got very angry when I got back so I turned around and walked right out again.
Now I do what I like working around numerous medical appointments but my husband got the message that I wasn’t going to be messed with. Reduced the confrontation wonderfully.
My daughter(God love her😂)sums it up-she didn’t ask to be born!It’s lovely if our adult children can provide some support but I don’t think we should expect it.They have their own lives to live and good luck to them
I personally think that people with dementia can control their poor behaviour more than is generally thought. If they couldn't there would be no 'host mode' with them being all sweetness and light. Because carers feel sorry for them (reasonably enough) they put up with poor behaviour and so it continues. Fear of upsetting or annoying the PWD keeps the carer trapped at home. @Lawson58's approach won't work for every carer but it will for some. And it's not the carer's responsibility to manage the PWD's relationships with other people if the PWD behaves badly towards them. If social events are not enjoyable with the PWD and s/he doesn't enjoy them then s/he should be left at home. Carers shouldn't have to give up every bit of enjoyment in their lives.
Host/Hostess mode takes a person with dementia a lot of effort and they cant maintain it for long. Also, nobody knows exactly how it works; it seems at times to be a subconscious survival response to perceived threats (a bit like being able to move much faster in an emergency)
I wouldnt want to hold up Host/Hostess mode as an example of them being able to control their behaviour.
i, too, think that the PWD can push it a bit. i dont think they can with host mode as it seems like an instinct but other things. my grandson is autistic but my son says that he knows when its the autism and when they are being naughty. i think sometimes its the same with dementia. my husband will sit in his chair[the throne] and expect me to make tea and put washing away etc. he is quite capable of doing it himself so he gets told. it might be a minor thing but if he still has the ability to do things then he does them.
I agree but I also believe that PWD can be highly manipulative, or try to be and I think it’s a bit like a child who would happily play one parent against the other. It is often the only way they see as having some control over what’s happening in their lives. It’s something they use against the prime carer and don’t have to think about others watching.
Hi @Skylark/2
So sorry to read your post and the relationship problems you're having.
Belated congratulations on your wedding anniversary.
My wife and I celebrated our 55th wedding anniversary at the end of last month, but only one of us knows.
One SiL gave a card that said "Look for the happiness in each day, even if some days you have to look harder" Not always possible with a PWD as you painfully point out.
As you also know a PWD cannot change their behaviours, so the carer has to.
Try not to let your husband's cruel words or behaviour spoil your own inner peace, if you can, and I know after my 6 years of full time caring that that's easier said than done!
Would a change in your husband's medication help? Why not speak with the GP and find out the alternatives?
As for the non-caring children, apart from the fact that they have their own lives to lead, you cannot now make them what they're not. With our three, one in late 40's and two in 50's, with work, families etc, one is reasonably local (an hour away by public transport as he doesn't have a car) and comes for one evening every week (unless work prevents it)(to allow me to go out for a respite break); one lives the other side of the country, and we have a video WhatApp chat every week or so, and she comes to stay for a weekend once every 6 to 8 weeks (to keep an eye on me)(and yay! she's coming this weekend); and one lives not too far away and we never hear from him, but every so often I'll send him a text to ask if he's OK and how his work and life are going ,and I get a brief reply if I'm lucky. I keep in touch with a couple of nieces (in their 40's) and the grandchildren (all in their 20's) by text or WhatsApp, and in fact we hear quite a lot and quite often from them, which is really nice, as their busy making their way too.
Try and keep on keeping on if you can, but do take care of yourself.
Best wishes, and a virtual hug.
So sorry to read your post and the relationship problems you're having.
Belated congratulations on your wedding anniversary.
My wife and I celebrated our 55th wedding anniversary at the end of last month, but only one of us knows.
One SiL gave a card that said "Look for the happiness in each day, even if some days you have to look harder" Not always possible with a PWD as you painfully point out.
As you also know a PWD cannot change their behaviours, so the carer has to.
Try not to let your husband's cruel words or behaviour spoil your own inner peace, if you can, and I know after my 6 years of full time caring that that's easier said than done!
Would a change in your husband's medication help? Why not speak with the GP and find out the alternatives?
As for the non-caring children, apart from the fact that they have their own lives to lead, you cannot now make them what they're not. With our three, one in late 40's and two in 50's, with work, families etc, one is reasonably local (an hour away by public transport as he doesn't have a car) and comes for one evening every week (unless work prevents it)(to allow me to go out for a respite break); one lives the other side of the country, and we have a video WhatApp chat every week or so, and she comes to stay for a weekend once every 6 to 8 weeks (to keep an eye on me)(and yay! she's coming this weekend); and one lives not too far away and we never hear from him, but every so often I'll send him a text to ask if he's OK and how his work and life are going ,and I get a brief reply if I'm lucky. I keep in touch with a couple of nieces (in their 40's) and the grandchildren (all in their 20's) by text or WhatsApp, and in fact we hear quite a lot and quite often from them, which is really nice, as their busy making their way too.
Try and keep on keeping on if you can, but do take care of yourself.
Best wishes, and a virtual hug.
Hi @Skylark/2
2nd reply
Amongst other things, you said "The son who lives in the States has been unable to visit for 3 years, first because of Covid and then whilst waiting for his green card which came through a few months ago. He has just returned to the States after being here in the U.K for 6 weeks. During this time he spent ( with his 3 year old daughter, our grandchild ) 9 days. We have just started to contribute to her future college fund. Today our son told us they would be coming to the U.K for Xmas but would be visiting us the week before Xmas, not over the Xmas period at all, they are staying with our DIL’s parents. I am disappointed that I won’t see our 3 years old granddaughter over the Xmas period…..maybe Boxing Day."
As you know, everybody looks at things from their own point of view. It may be that son who lives in USA is thinking of you for when he and family visit UK. Maybe he thinks with you OH having dementia, and you caring, that having them to stay might me too much of a burden or strain and thus to lessen your load, they'll stay with your DiL's parents, who if both well and healthy, will be better able to host. Lots of people, family included sometimes, think its awkward to be with a PWD as they don't know how to deal with or handle things. If you want to see your grandchild more, can't you speak to him and tell him it would be nice for both of you to see her in person and how she's getting on.
Just my thoughts. I'm an upfront sort of person, and sometimes get in to trouble for being a bit blunt and saying things as I see them! - and certainly think I should be able to do so with family.
Best wishes.
2nd reply
Amongst other things, you said "The son who lives in the States has been unable to visit for 3 years, first because of Covid and then whilst waiting for his green card which came through a few months ago. He has just returned to the States after being here in the U.K for 6 weeks. During this time he spent ( with his 3 year old daughter, our grandchild ) 9 days. We have just started to contribute to her future college fund. Today our son told us they would be coming to the U.K for Xmas but would be visiting us the week before Xmas, not over the Xmas period at all, they are staying with our DIL’s parents. I am disappointed that I won’t see our 3 years old granddaughter over the Xmas period…..maybe Boxing Day."
As you know, everybody looks at things from their own point of view. It may be that son who lives in USA is thinking of you for when he and family visit UK. Maybe he thinks with you OH having dementia, and you caring, that having them to stay might me too much of a burden or strain and thus to lessen your load, they'll stay with your DiL's parents, who if both well and healthy, will be better able to host. Lots of people, family included sometimes, think its awkward to be with a PWD as they don't know how to deal with or handle things. If you want to see your grandchild more, can't you speak to him and tell him it would be nice for both of you to see her in person and how she's getting on.
Just my thoughts. I'm an upfront sort of person, and sometimes get in to trouble for being a bit blunt and saying things as I see them! - and certainly think I should be able to do so with family.
Best wishes.
Hello there,
Thanks for taking the time to reply a second time.
Totally agree that family and friends sometime feel awkward being with PWD and so drift away. U.S.A son probably does think it’ll be too much of a burden for me to have them stay. By the way his FIL also has been diagnosed with dementia but ,unlike his father, is an even tempered, mild mannered man!
Apologies for the delay in replying but have been trying to sort out a misunderstanding with British Gas. We received a letter threatening us with a debt collection company unless we paid money owed for electricity used!
The amount they said we owed was less than our monthly debit plus we are £100’s of pounds in credit. After almost 1 hour on the phone, being put through to 3 different departments, spoke to 4 different ‘ advisors’, British Gas told me it was a mistake! I have asked for either an email or a letter assuring me that they will not be contacting the debit collection agency and pointing out that failure to do so will affect our credit rating. They agreed to send an email but I’m still waiting.
Do I need this stress British Gas……..absolutely not.
Well done @Skylark/2: in dealing with Brit Gas bullying. Stick to your guns. I've just had the same. Huge credit on my bill, and they say they'll lover the direct debit amount by a few ££s - no, no - so like you on the phone for ages, but eventually got them to agree to return the sum in credit to me, lower the dd by more. I know the dd payments are supposed to even out over a year, but I think I might as well have the credit sum in an interest bearing account until the cold weather comes, when I'll have to up the monthly payments. I think its a bit of cheek for huge Brit Gas to get a backdoor free loan from its many small customers! Rant over. Blood pressure reducing! And breathe.
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