Dad's dementia dominates my life
- Thread starter Petrina
- Start date
I just came back to this. I've been trying to wind down from being with Dad this evening. I spent ages making sense of his old word processor and drawing up a very simple list of keys to strike to adjust the font and format, then taking him through it to make sure he could follow my guide.
We also spent a little time sorting some other stuff then I got up to go and put my outdoor things on. I said what I'd be doing over the next couple of days, making it clear I'd be there in the evenings, and before I knew where I was, he was telling me all about how successful he'd been. I stood there listening for 20 minutes. It hurts because I haven't been successful in life and the last thing I need when I say I'm going to do something which for me is a big thing is him telling me all the really big things he's done that put me in the shade. He doesn't mean to belittle me, it just feels like it, but listening to this day after day is getting me down. I've tried asking him not to go on about it, but of course he forgets, so now I just try to let it wash over me.
Nevertheless, I came home at ten and it's now one and I'm still hyped up. I've been doing my accounts because I thought focusing on them would take my mind off Dad, but it hasn't.
I love him very much, but like all parents he has his less attractive features and dementia doesn't seem to be lessening them.
We also spent a little time sorting some other stuff then I got up to go and put my outdoor things on. I said what I'd be doing over the next couple of days, making it clear I'd be there in the evenings, and before I knew where I was, he was telling me all about how successful he'd been. I stood there listening for 20 minutes. It hurts because I haven't been successful in life and the last thing I need when I say I'm going to do something which for me is a big thing is him telling me all the really big things he's done that put me in the shade. He doesn't mean to belittle me, it just feels like it, but listening to this day after day is getting me down. I've tried asking him not to go on about it, but of course he forgets, so now I just try to let it wash over me.
Nevertheless, I came home at ten and it's now one and I'm still hyped up. I've been doing my accounts because I thought focusing on them would take my mind off Dad, but it hasn't.
I love him very much, but like all parents he has his less attractive features and dementia doesn't seem to be lessening them.
I could've written that post title! That's exactly how i feel at the moment.
This is like Alzheimer's Anonymous: "Hi, I'm FiveWords, and my dad's dementia dominates my life". Next person's turn!
The phone ringing thing - I find changing my ringtone regularly eases the gut-wrenching flight or fight response everytime it goes off. It's Pavlovian conditioning that's half the problem; you hear someone else's phone make the same noise as yours and even though you know it's not yours, you react the same. Change the noise and the response might dull for a while. Then change it again. That's what I find anyway. Just don't choose a song you like, you might never be able to listen to it again. Stanley Kubrick eat your heart out.
Massive hugs to all xxx
This is like Alzheimer's Anonymous: "Hi, I'm FiveWords, and my dad's dementia dominates my life". Next person's turn!
The phone ringing thing - I find changing my ringtone regularly eases the gut-wrenching flight or fight response everytime it goes off. It's Pavlovian conditioning that's half the problem; you hear someone else's phone make the same noise as yours and even though you know it's not yours, you react the same. Change the noise and the response might dull for a while. Then change it again. That's what I find anyway. Just don't choose a song you like, you might never be able to listen to it again. Stanley Kubrick eat your heart out.
Massive hugs to all xxx
That's a clever idea with the phone ringtones.
I've just been contemplating answering the phone with "Dementia care service, how may I be of assistance?" Dad would find it funny, I think, but if anyone else phoned, it might be tricky.
I've just been contemplating answering the phone with "Dementia care service, how may I be of assistance?" Dad would find it funny, I think, but if anyone else phoned, it might be tricky.
hi
I was pleased to read these posts as they expresss what I'm feeling. My mother in law was diagnosed with vascular dementia in September after being admitted to hospital following being sectioned. She is dominating my life. She is a widow and my partner is an only child and I feel like I have become the sister he doesn't have. I have never been particularly close to MIL and I suppose I resent the impact she is making on my life. It was decided while she was in hospital that she should go back to her own home, although she says she wants to go back to the home she lived in 70 years ago because thats home. She has carers 4 times a day, but still doesn't eat properly, doesn't wash and puts her dirty clothes back in the drawers. She tells stories constantly, which drives me mad, blames things that she does on an imaginary naughty 5year old boy that apparently visits, although he has no name. After visiting her it takes me hours to get back to normal, I'm having trouble sleeping, have a constant headache and recently had to turn down the opportunity to take a promotion at work, which would have resulted in a substantial increase in pay, because I feel incapable of coping with new information because my brain is taken up with MIL. I'm the one who is dealing with the SW, the CPN, sorting out everything. She wont go to daycare even though she enjoys when we can get her there and when she refuses to go, its me the SW calls and expects me to get out of work to do a 20 miles round trip to take her. Before coming out of hospital the SW said she would go to respite for 2 weeks every 6 weeks, but when the care plan came that wasn't in it and I feel that they just said anything to get us to agree, rather than her go to supported housing or residential care which would have been better for her. She is lonely and isolated where she is.
I just feel under pressure all the time, how do you get to the point where you can just let everything go over your head?
This is the first time that I have realised that other people are having almost identical experiences to me, even if the detail is not quite the same.
Sorry to ramble!
I was pleased to read these posts as they expresss what I'm feeling. My mother in law was diagnosed with vascular dementia in September after being admitted to hospital following being sectioned. She is dominating my life. She is a widow and my partner is an only child and I feel like I have become the sister he doesn't have. I have never been particularly close to MIL and I suppose I resent the impact she is making on my life. It was decided while she was in hospital that she should go back to her own home, although she says she wants to go back to the home she lived in 70 years ago because thats home. She has carers 4 times a day, but still doesn't eat properly, doesn't wash and puts her dirty clothes back in the drawers. She tells stories constantly, which drives me mad, blames things that she does on an imaginary naughty 5year old boy that apparently visits, although he has no name. After visiting her it takes me hours to get back to normal, I'm having trouble sleeping, have a constant headache and recently had to turn down the opportunity to take a promotion at work, which would have resulted in a substantial increase in pay, because I feel incapable of coping with new information because my brain is taken up with MIL. I'm the one who is dealing with the SW, the CPN, sorting out everything. She wont go to daycare even though she enjoys when we can get her there and when she refuses to go, its me the SW calls and expects me to get out of work to do a 20 miles round trip to take her. Before coming out of hospital the SW said she would go to respite for 2 weeks every 6 weeks, but when the care plan came that wasn't in it and I feel that they just said anything to get us to agree, rather than her go to supported housing or residential care which would have been better for her. She is lonely and isolated where she is.
I just feel under pressure all the time, how do you get to the point where you can just let everything go over your head?
This is the first time that I have realised that other people are having almost identical experiences to me, even if the detail is not quite the same.
Sorry to ramble!
Hello DIL
Welcome to talking point. Hopefully you feel better after writing that all down and getting it off your chest; certainly realising that others are feeling just as downtrodden and angry as you is the first step towards dealing with it. You are not uncaring or a bad person; you're just like the rest of us, forced into this dreadful situation.
Caring for your own parent is hard enough. Caring for an in-law is a different proposition all together. Maybe you could wait until there are some other responses and then let your husband read this thread? He needs to understand what it's doing to you (and others like you) and that those of us who have been through it ourselves are on your side, every step of the way.
For my two pennyworth, you as his wife, are his priority. You married him, not his mother.
Husbands, eh? I expect he has you writing all his Christmas cards too.
Welcome to talking point. Hopefully you feel better after writing that all down and getting it off your chest; certainly realising that others are feeling just as downtrodden and angry as you is the first step towards dealing with it. You are not uncaring or a bad person; you're just like the rest of us, forced into this dreadful situation.
Caring for your own parent is hard enough. Caring for an in-law is a different proposition all together. Maybe you could wait until there are some other responses and then let your husband read this thread? He needs to understand what it's doing to you (and others like you) and that those of us who have been through it ourselves are on your side, every step of the way.
For my two pennyworth, you as his wife, are his priority. You married him, not his mother.
Husbands, eh? I expect he has you writing all his Christmas cards too.
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Should have added...in the short term, prioritise. Put aside the problems you can't solve - for instance, there is not much you can do about her loneliness if she refuses to co-operate. Don't fret about issues you can't resolve.
Then list the other more practical issues you are having to deal with and decide which ones you can take on and which ones your husband must see to. Too many men (and I count my dear husband amongst them) still seem to regard the caring role regarding their parents falling first on their sisters and, in your case, their wives. His mother is his responsibility - and you can help him - not the other way round.
This thread could have been started by many of us as much as we love our relatives their illness does dominate everything.
Even though Grandad has been in a care home for the last 3 and half years it feels as if my life has been revolving around him for the last 7 or 8 years - if we're not visiting him, we're sorting out his paperwork/finances/tennants/writing letters or cards to his friends etc or thinking about it all.
We all want to be superperson but in reality we can only do our best and I try to only stress about things that I can do something about - even though it's easier said than done.
I hope that everyone gets the support that they deserve on their journey with their loved ones.
Even though Grandad has been in a care home for the last 3 and half years it feels as if my life has been revolving around him for the last 7 or 8 years - if we're not visiting him, we're sorting out his paperwork/finances/tennants/writing letters or cards to his friends etc or thinking about it all.
We all want to be superperson but in reality we can only do our best and I try to only stress about things that I can do something about - even though it's easier said than done.
I hope that everyone gets the support that they deserve on their journey with their loved ones.
Hi DIL, you really are under stress aren't you? What a shame you had to turn down that promotion. I totally understand what you mean about your mind being too pre-occupied. Please plan a strategic withdrawal from this level of elder support and a move towards furthering your career when the next opportunity arises.
The SW has you as an unpaid assistant, rushing off to collect your MIL if she doesn't want to go to day care. S/he hasn't organised the respite which was agreed verbally. I expect the SW would think that it had been 'suggested' or 'discussed' not agreed. I think it's time for another meeting with the SW, you and your partner, to review the situation. You agreed to things when your MIL was coming out of hospital but it was an unknown situation you were entering and now you've had a chance to experience the practicalities you need to review it.
Your partner needs to understand that you are his deputy not the one with two full-time jobs. Just as SS tell you the extent of the package they can offer, you also need to decide how much you can offer and lay that on the table. I would strongly suggest that it does not include collecting your MIL unless this has been agreed in advance. I have learned the hard way to BE LESS AVAILABLE.
I also felt my MIL's needs were dominating my life and I was always rushing round, or sending my daughter round, often several times a day. MIL's daughter was not available to help, but still managed to fit in a couple of social visits to her mum every week, followed by phone calls to me telling me the things she's spotted that needed sorting out. If MIL rang me and I didn't respond instantly to her problems she would ring her daughter and I would then be hunted down by phone and urged to go and sort it out straight away. It was very hard to refuse without getting into conflict.
On advice from other family members, and friends, I arranged to be away from home quite a lot over the following couple of months. When SIL phoned me while I was away I refused to pick up the issues until I returned. SIL had to either deal with them herself or tell her mum that the latest 'crisis' could wait a few days. In your case, for SIL read SW.
Perhaps it would help to think more in work-mode about this situation. We usually find it easier to say No, or to insist on re-prioritising some other task, when we are at work because everyone, or nearly everyone, else understands that this is reasonable. It is unreasonable for an employer to expect you to constantly fit in new tasks around the work that you are already responsible for, or to work extra hours with no notice. If your work situation already involves this type of employer-led 'flexibility' then I hope you get paid extremely well for the inconvenience!
The SW has you as an unpaid assistant, rushing off to collect your MIL if she doesn't want to go to day care. S/he hasn't organised the respite which was agreed verbally. I expect the SW would think that it had been 'suggested' or 'discussed' not agreed. I think it's time for another meeting with the SW, you and your partner, to review the situation. You agreed to things when your MIL was coming out of hospital but it was an unknown situation you were entering and now you've had a chance to experience the practicalities you need to review it.
Your partner needs to understand that you are his deputy not the one with two full-time jobs. Just as SS tell you the extent of the package they can offer, you also need to decide how much you can offer and lay that on the table. I would strongly suggest that it does not include collecting your MIL unless this has been agreed in advance. I have learned the hard way to BE LESS AVAILABLE.
I also felt my MIL's needs were dominating my life and I was always rushing round, or sending my daughter round, often several times a day. MIL's daughter was not available to help, but still managed to fit in a couple of social visits to her mum every week, followed by phone calls to me telling me the things she's spotted that needed sorting out. If MIL rang me and I didn't respond instantly to her problems she would ring her daughter and I would then be hunted down by phone and urged to go and sort it out straight away. It was very hard to refuse without getting into conflict.
On advice from other family members, and friends, I arranged to be away from home quite a lot over the following couple of months. When SIL phoned me while I was away I refused to pick up the issues until I returned. SIL had to either deal with them herself or tell her mum that the latest 'crisis' could wait a few days. In your case, for SIL read SW.
Perhaps it would help to think more in work-mode about this situation. We usually find it easier to say No, or to insist on re-prioritising some other task, when we are at work because everyone, or nearly everyone, else understands that this is reasonable. It is unreasonable for an employer to expect you to constantly fit in new tasks around the work that you are already responsible for, or to work extra hours with no notice. If your work situation already involves this type of employer-led 'flexibility' then I hope you get paid extremely well for the inconvenience!
My brother visits Dad once a week if he feels up to it, not if he doesn't, never giving Dad any warning as to whether he's coming or not.
He does a few bits and pieces but has no idea of the chaos he can cause.
Example. Old papers up corner. Brother decides to get in corner for something. Empties a couple of carefully-stacked crates in garage, leaving contents scattered. Dumps papers in crates and puts them where Dad trips over them every time he goes to close the curtains. Gets Dad to start going through (very, very old, irrelevant) papers and shredding them. Goes away.
It's then up to me to take 3 weeks to persuade Dad that he doesn't have to do anything with the papers and to get him to let me put them somewhere out of the way.
My brother likes to promise Dad he'll sort something out then leave me to do the donkey work.
One thing I can be very sure of is that he won't ever be the one that comes out in the middle of the night to help. Or even in the middle of the day if he's not in the mood.
Dad thinks my brother is just after his money. He's not. But when he interferes but doesn't give help when and where it's really needed, it's difficult to convince Dad of that.
Thank you all for your support. I think that this weekend MIL has had a slight deterioration. She has been mildly verbally agressive which she hasn't really been previously. Don't know whether that is just a sign of frustration or another TIA.
I am trying to withdraw, but think that, rightly or wrongly, if I dont do the things I do she wont be able to continue in her own home. Having to force her into residential care will cause a guilt trip as well even though I know that it would be the best thing, if ever these things can have a good outcome.
The SW has agreed to review her case in another 6 weeks, but had everything been "OK", she would have left it for 12months. How can that be right, when people have an illness that can cause rapid deterioration?
I have also started to keep a diary of visits to her, so that at the next review I will be much more prepared, although having the review with MIL present doesn't really allow you to express fully your concerns because she would just say that she does the things that I know she doesn't. The next time I think that I will ask that the CPN also attends, as she is visiting her once a week, her perspective will provide an alternative view.
Thanks again for your support and advice
PS Chemmy my OH never writes christmas cards, he thinks that there is a christmas fairy that puts everything together and delivers Christmas!!!!
I am trying to withdraw, but think that, rightly or wrongly, if I dont do the things I do she wont be able to continue in her own home. Having to force her into residential care will cause a guilt trip as well even though I know that it would be the best thing, if ever these things can have a good outcome.
The SW has agreed to review her case in another 6 weeks, but had everything been "OK", she would have left it for 12months. How can that be right, when people have an illness that can cause rapid deterioration?
I have also started to keep a diary of visits to her, so that at the next review I will be much more prepared, although having the review with MIL present doesn't really allow you to express fully your concerns because she would just say that she does the things that I know she doesn't. The next time I think that I will ask that the CPN also attends, as she is visiting her once a week, her perspective will provide an alternative view.
Thanks again for your support and advice
PS Chemmy my OH never writes christmas cards, he thinks that there is a christmas fairy that puts everything together and delivers Christmas!!!!
It's a relief to read about other people going through this, although obviously i wish none of us had to. My father has dementia but refuses to accept it. He lives in spain but insists on flying around like a bloody yoyo (he has to come back here for medical care) even though the doctors have said he should not be travelling alone. He refuses to pay the carer I found for him, and I have now taken out a bank loan to pay the carer because without him my dad would fall, or burn his house down in a second (he spent a week in hospital after a fall last month but can't even remember it).
He owns two properties, and he agreed that I could let out the flat that he is not living in so that I could use that money to help pay the carer, but now he has changed his mind and is furious with me for trying to organise it and for paying for his carer, which he says I have been doing behind his back. He has always been a bully, and my mum left him a year ago because she could no longer cope with his rages which really frighten her: the illness and frustration make him even angrier than he was before.
I just don't know how I can cope with this. I have 3 small children, and am self-employed but I have more or less had to stop working now because the stress of coping with two ill parents (my mum is not well either) is now giving me panic attacks. My only sister died twenty years ago, and my husband is lovely, but can only support me so much. I'm not sure how long i can keep going.
He owns two properties, and he agreed that I could let out the flat that he is not living in so that I could use that money to help pay the carer, but now he has changed his mind and is furious with me for trying to organise it and for paying for his carer, which he says I have been doing behind his back. He has always been a bully, and my mum left him a year ago because she could no longer cope with his rages which really frighten her: the illness and frustration make him even angrier than he was before.
I just don't know how I can cope with this. I have 3 small children, and am self-employed but I have more or less had to stop working now because the stress of coping with two ill parents (my mum is not well either) is now giving me panic attacks. My only sister died twenty years ago, and my husband is lovely, but can only support me so much. I'm not sure how long i can keep going.
Some of the other threads on here will give you a pretty good idea of what lies ahead. It doesn't get any easier and how far you are prepared to go along with supporting your MIL to stay at home is clearly up to you. However, you will feel the guilt whenever you make the decision, so please don't use that a reason for putting off the inevitable at the expense of your own sanity and well-being.
Hello Bibizee.
Welcome to talking point
Goodness, that's an added complication. I think we're all going to have to think about that one for a bit!
Welcome to talking point
Goodness, that's an added complication. I think we're all going to have to think about that one for a bit!
Yes, it makes it all much harder. he lived with us in the UK till mum finally couldn't take it any more and told him to leave. We got the diagnosis a few months later, but she just wouldn't be strong enough to care for him. She still lives upstairs now, but when he comes back from doctors appointments (about every month or two because he has another condition as well) she goes to stay with her sister and i look after him. the relationship between them is toxic and makes my mum ill. it's a nightmare really.
what worries me most is that i need to make some decisions for him - like renting out the other flat behind his back, so i can pay the carer. but i just find that so hard. he's still "there" enough, and he seems to go downhill and then suddenly improve again so that one minute I'm dealing with someone who can't really get about, and then the next he's found his way to the other flat and is unpacking everything I've packed up. It really does completely dominate my life.
what worries me most is that i need to make some decisions for him - like renting out the other flat behind his back, so i can pay the carer. but i just find that so hard. he's still "there" enough, and he seems to go downhill and then suddenly improve again so that one minute I'm dealing with someone who can't really get about, and then the next he's found his way to the other flat and is unpacking everything I've packed up. It really does completely dominate my life.
Hi bibizee
What do you think would happen if you did nothing (other than looking after your mum)?
Actually, rereading your first post, you've already answered that - I presume this is over in Spain? Why did he choose to go over there if he has another flat and needs medical treatment in the UK?
Maybe he needs to 'lose' his passport (just thinking aloud). That way you could get UK social services and his GP involved (does he have a GP over here?)
What do you think would happen if you did nothing (other than looking after your mum)?
Actually, rereading your first post, you've already answered that - I presume this is over in Spain? Why did he choose to go over there if he has another flat and needs medical treatment in the UK?
Maybe he needs to 'lose' his passport (just thinking aloud). That way you could get UK social services and his GP involved (does he have a GP over here?)
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