Please help me. My OH was diagnosed 7 years ago with AD but has been mostly very fit since then. Now he's getting iller more quickly (he is on Donezepil). Sometimes he's his old self, cheerful, funny, able to make decisions etc etc, but increasingly he's confused, unable to finish sentences, cant see or find things, drops things, loses things etc etc while still wanting to be completely in control. He was always keen on having his own way and still is but I now need to do almost everything for him (he can dress and wash himself still) while pretending he is doing everything for himself. I don't want to snap or seem to be being bossy, but he needs a lot of help and I'm on duty all the time he's awake (he sleeps well, thank goodness) I'm finding it very hard to help him when he's so resistant to being helped (we never talk about his illness.) And now I am waiting for a hip replacement and am in a lot of pain and only comfortable when in bed, but I am trying to be kind and cheerful always. Does anyone have any advice on how to manage a controlling but unwell person who is determined to have everything his own way, even though he can't really cope unless I wade in and do stuff for him ?
Tearing my hair out
- Thread starter Morganlefay
- Start date
I have only been a member here for a couple of years but have read many posts like this. The carer doesn't ever want to mention the 'D' word and doesn't want to be bossy. A post is then made when the forum member is struggling with a truculent partner/parent/grandparent. My following comment won't sit easy with many/most of the membership.
Your post states that you don't want to be bossy but that you want to manage the situation. I think that managing a situation means being the boss. When my wife was diagnosed the diagnosis was delivered in a cold and blunt fashion and she was shocked by the manner of the delivery. I take my cue from my wife's Consultant and am not afraid to mention the 'D' word or discuss the implications of that diagnosis when my wife asks questions.
A couple of years back my wife, in a fit of pique, announced that she could manage her own medication. I let her get on with it but within 24hrs she had missed doses and then double dosed. I pointed this out and took back control. She has never mentioned medication again. I take the same attitude with all aspects of life and let my wife try things, with me stepping in if life, limb or property are put at risk. I always point out why I'm taking control and let her know that I will let her assist me to the level that I deem safe for both of us and our home.
I am bossy and I discuss dementia with my wife(although I'm as positive as I can be on that score).
My attitude doesn't stop the progression of dementia and nor does it make life easy for me. As many of you know, I quit as a volunteer host here several months ago because I was at crisis point and had to concentrate on my caring role. What my attitude does do is make it easier for me to call upon Social Services and get them and my wife on board with assistance for me. Things are still difficult but I do have help.
My basic thought is why should anyone be surprised if their loved one thinks there is nothing wrong and that they still do everything for themselves if they have never been told any different or controlled to the extent that is required for their own safety and the safety of others.
This is how I operate and I know that it may not work for everyone but I just thought I'd put it out there as I noticed that your post had been read a few dozen times but had not received any replies.
I wish you the strength you will need for the future - it's very hard.
Your post states that you don't want to be bossy but that you want to manage the situation. I think that managing a situation means being the boss. When my wife was diagnosed the diagnosis was delivered in a cold and blunt fashion and she was shocked by the manner of the delivery. I take my cue from my wife's Consultant and am not afraid to mention the 'D' word or discuss the implications of that diagnosis when my wife asks questions.
A couple of years back my wife, in a fit of pique, announced that she could manage her own medication. I let her get on with it but within 24hrs she had missed doses and then double dosed. I pointed this out and took back control. She has never mentioned medication again. I take the same attitude with all aspects of life and let my wife try things, with me stepping in if life, limb or property are put at risk. I always point out why I'm taking control and let her know that I will let her assist me to the level that I deem safe for both of us and our home.
I am bossy and I discuss dementia with my wife(although I'm as positive as I can be on that score).
My attitude doesn't stop the progression of dementia and nor does it make life easy for me. As many of you know, I quit as a volunteer host here several months ago because I was at crisis point and had to concentrate on my caring role. What my attitude does do is make it easier for me to call upon Social Services and get them and my wife on board with assistance for me. Things are still difficult but I do have help.
My basic thought is why should anyone be surprised if their loved one thinks there is nothing wrong and that they still do everything for themselves if they have never been told any different or controlled to the extent that is required for their own safety and the safety of others.
This is how I operate and I know that it may not work for everyone but I just thought I'd put it out there as I noticed that your post had been read a few dozen times but had not received any replies.
I wish you the strength you will need for the future - it's very hard.
I have to agree with @karaokePete
My dad and I got along quite well in the early stages when he knew he had dementia and was willing to accept support but as he worsened and “knew” he was “fine” I simply took over and organised the care he needed as it had got to the stage where I just couldn’t cope alone anymore.
I say “simply” - it actually took weeks to sort out a package that worked for dad. But it was a massive relief for me once I had. I dad never complained about his new assistants!
My dad and I got along quite well in the early stages when he knew he had dementia and was willing to accept support but as he worsened and “knew” he was “fine” I simply took over and organised the care he needed as it had got to the stage where I just couldn’t cope alone anymore.
I say “simply” - it actually took weeks to sort out a package that worked for dad. But it was a massive relief for me once I had. I dad never complained about his new assistants!
[Thank you for taking the trouble to reply to me, but I'm not sure quite how to read your post. My OH was diagnosed seven years ago, and for seven years we have lived reasonably peacefully like this. I can't wind the clock back now and do it differently, and the way I approached it has always seemed to be just what he wanted. As the person now running the household of course I am bossy, but for seven years have tried to be so with my hand in a velvet glove. I would not willingly do anything now which I would regret as he became iller, and I had to look back on as something I wished I hadn't done. My problem is exacerbated by my horrible hip pain which is making me much less tolerant than usual, and what I wonder is whether anyone out there has any sort of technique for dealing with anger, irritation, misery and depression . I'm not religious and at times like this I'd possibly have found that helpful. I read poetry, listen to music, walk in the woods (when my hip will let me) but does anyone have any techniques/ ideas which help them when it all gets too much ?
QUOTE="karaokePete, post: 1672188, member: 67505"]I have only been a member here for a couple of years but have read many posts like this. The carer doesn't ever want to mention the 'D' word and doesn't want to be bossy. A post is then made when the forum member is struggling with a truculent partner/parent/grandparent. My following comment won't sit easy with many/most of the membership.
Your post states that you don't want to be bossy but that you want to manage the situation. I think that managing a situation means being the boss. When my wife was diagnosed the diagnosis was delivered in a cold and blunt fashion and she was shocked by the manner of the delivery. I take my cue from my wife's Consultant and am not afraid to mention the 'D' word or discuss the implications of that diagnosis when my wife asks questions.
A couple of years back my wife, in a fit of pique, announced that she could manage her own medication. I let her get on with it but within 24hrs she had missed doses and then double dosed. I pointed this out and took back control. She has never mentioned medication again. I take the same attitude with all aspects of life and let my wife try things, with me stepping in if life, limb or property are put at risk. I always point out why I'm taking control and let her know that I will let her assist me to the level that I deem safe for both of us and our home.
I am bossy and I discuss dementia with my wife(although I'm as positive as I can be on that score).
My attitude doesn't stop the progression of dementia and nor does it make life easy for me. As many of you know, I quit as a volunteer host here several months ago because I was at crisis point and had to concentrate on my caring role. What my attitude does do is make it easier for me to call upon Social Services and get them and my wife on board with assistance for me. Things are still difficult but I do have help.
My basic thought is why should anyone be surprised if their loved one thinks there is nothing wrong and that they still do everything for themselves if they have never been told any different or controlled to the extent that is required for their own safety and the safety of others.
This is how I operate and I know that it may not work for everyone but I just thought I'd put it out there as I noticed that your post had been read a few dozen times but had not received any replies.
I wish you the strength you will need for the future - it's very hard.[/QUOTE]
QUOTE="karaokePete, post: 1672188, member: 67505"]I have only been a member here for a couple of years but have read many posts like this. The carer doesn't ever want to mention the 'D' word and doesn't want to be bossy. A post is then made when the forum member is struggling with a truculent partner/parent/grandparent. My following comment won't sit easy with many/most of the membership.
Your post states that you don't want to be bossy but that you want to manage the situation. I think that managing a situation means being the boss. When my wife was diagnosed the diagnosis was delivered in a cold and blunt fashion and she was shocked by the manner of the delivery. I take my cue from my wife's Consultant and am not afraid to mention the 'D' word or discuss the implications of that diagnosis when my wife asks questions.
A couple of years back my wife, in a fit of pique, announced that she could manage her own medication. I let her get on with it but within 24hrs she had missed doses and then double dosed. I pointed this out and took back control. She has never mentioned medication again. I take the same attitude with all aspects of life and let my wife try things, with me stepping in if life, limb or property are put at risk. I always point out why I'm taking control and let her know that I will let her assist me to the level that I deem safe for both of us and our home.
I am bossy and I discuss dementia with my wife(although I'm as positive as I can be on that score).
My attitude doesn't stop the progression of dementia and nor does it make life easy for me. As many of you know, I quit as a volunteer host here several months ago because I was at crisis point and had to concentrate on my caring role. What my attitude does do is make it easier for me to call upon Social Services and get them and my wife on board with assistance for me. Things are still difficult but I do have help.
My basic thought is why should anyone be surprised if their loved one thinks there is nothing wrong and that they still do everything for themselves if they have never been told any different or controlled to the extent that is required for their own safety and the safety of others.
This is how I operate and I know that it may not work for everyone but I just thought I'd put it out there as I noticed that your post had been read a few dozen times but had not received any replies.
I wish you the strength you will need for the future - it's very hard.[/QUOTE]
Food, music & removing yourself to put the kettle on. Hopefully your OH attention span can be distracted by a snack - cake always a winner with Mum!
The other turn of phrase I use a lot is - I’m not sure, let me put the kettle on & I will have a think. Hopefully the mug of whatever I return with will be a distraction in itself.
I know when Mum is brewing - so the radio or TV is a great distraction.
Local paper is another one - oh did you see....
If all else fails .... please don’t take offence, the local obituaries.... oh yes mothers obsessed! Not the births or marriages, but who she knows or thinks she knows who has passed!
I ve even stared out of a window & said oh strange bird in garden, cat, flappy thing! ( oh my mistake it’s wind blowing the bush) Just to distract her !!!
Tipping point is a great hit with my PWD the counters going over must be therapeutic.
But to be honest it’s mostly sweet snacks that are a big hit!
Hope something in this is of help!
oh old photos - of the PWD ... always a big hit!
((((hugs)))))
The other turn of phrase I use a lot is - I’m not sure, let me put the kettle on & I will have a think. Hopefully the mug of whatever I return with will be a distraction in itself.
I know when Mum is brewing - so the radio or TV is a great distraction.
Local paper is another one - oh did you see....
If all else fails .... please don’t take offence, the local obituaries.... oh yes mothers obsessed! Not the births or marriages, but who she knows or thinks she knows who has passed!
I ve even stared out of a window & said oh strange bird in garden, cat, flappy thing! ( oh my mistake it’s wind blowing the bush) Just to distract her !!!
Tipping point is a great hit with my PWD the counters going over must be therapeutic.
But to be honest it’s mostly sweet snacks that are a big hit!
Hope something in this is of help!
oh old photos - of the PWD ... always a big hit!
((((hugs)))))
I am with dad most of the time but I don't consider myself bossy apart from confiscating the salt and pepper this week to stop dad coughing to excess because he puts so much on it is like a crust. He seems to have accepted this quite happily.
Generally we get along very well so maybe I am doing something right or perhaps dad and myself are just very easy going. I don't know.
There are some things that I do find very annoying like when dad wanders about the room rearranging things and the huffing and puffing over his meals being to big (they are not) I should probably make a fuss about his meagre attempts to have a wash but I know it would be a battle that I would lose so I have learn't to choose my battles wisely.
It's still hard.
Generally we get along very well so maybe I am doing something right or perhaps dad and myself are just very easy going. I don't know.
There are some things that I do find very annoying like when dad wanders about the room rearranging things and the huffing and puffing over his meals being to big (they are not) I should probably make a fuss about his meagre attempts to have a wash but I know it would be a battle that I would lose so I have learn't to choose my battles wisely.
It's still hard.
My Granny use to say - pick your battles carefully; & only then pick the ones you can win!
old spice for Christmas!
old spice for Christmas!
Hi Morganlefay,
This is the first post I've replied to so hope it works....
My mum has a very similar thing with my dad to you - he wants to do everything for himself, but can't and refuses her help. I'm not sure there are any clear solutions - and sometimes what works one day doesn't work the next. My dad likes to help, so I give him things to help with - e.g. holding something in a shop for me, that I know he can do.
The only advice I do have is that don't put too much pressure on yourself to be kind and cheerful all the time - it sounds hard, especially with your own pain
Thank you - lots of good ideas, and I hadn't thought of sweet snacks, but he loves chocolate and I could just go and make a cuppa, promise some chocolate and go and shout in the garden. Removing myself, and strange birds and cats in the garden might be a really brilliant idea xx
QUOTE="DesperateofDevon, post: 1672257, member: 80872"]Food, music & removing yourself to put the kettle on. Hopefully your OH attention span can be distracted by a snack - cake always a winner with Mum!
The other turn of phrase I use a lot is - I’m not sure, let me put the kettle on & I will have a think. Hopefully the mug of whatever I return with will be a distraction in itself.
I know when Mum is brewing - so the radio or TV is a great distraction.
Local paper is another one - oh did you see....
If all else fails .... please don’t take offence, the local obituaries.... oh yes mothers obsessed! Not the births or marriages, but who she knows or thinks she knows who has passed!
I ve even stared out of a window & said oh strange bird in garden, cat, flappy thing! ( oh my mistake it’s wind blowing the bush) Just to distract her !!!
Tipping point is a great hit with my PWD the counters going over must be therapeutic.
But to be honest it’s mostly sweet snacks that are a big hit!
Hope something in this is of help!
oh old photos - of the PWD ... always a big hit!
((((hugs)))))[/QUOTE]
QUOTE="DesperateofDevon, post: 1672257, member: 80872"]Food, music & removing yourself to put the kettle on. Hopefully your OH attention span can be distracted by a snack - cake always a winner with Mum!
The other turn of phrase I use a lot is - I’m not sure, let me put the kettle on & I will have a think. Hopefully the mug of whatever I return with will be a distraction in itself.
I know when Mum is brewing - so the radio or TV is a great distraction.
Local paper is another one - oh did you see....
If all else fails .... please don’t take offence, the local obituaries.... oh yes mothers obsessed! Not the births or marriages, but who she knows or thinks she knows who has passed!
I ve even stared out of a window & said oh strange bird in garden, cat, flappy thing! ( oh my mistake it’s wind blowing the bush) Just to distract her !!!
Tipping point is a great hit with my PWD the counters going over must be therapeutic.
But to be honest it’s mostly sweet snacks that are a big hit!
Hope something in this is of help!
oh old photos - of the PWD ... always a big hit!
((((hugs)))))[/QUOTE]
Thank you 'choosing battles wisely' is a good thought, which I can try to remember xx
Thank you, distracting him is a good thing to do, and you're right about putting pressure on yourself, but it's hard when \i've always tried to be kind and friendly and my hip 'goes' and I just feel like biting his head off ! (and my own) ! xx
Hello again @Morganlefay.
I have now read your reply to my earlier post and think that you are probably acting in a similar way to me. I'm bossy with my wife, but in the nicest way possible. I haven't, and never will do anything that I will regret. I see it as tough love as I always act in my wife's interests because I'm determined to keep her as well as possible for as long as possible. I suppose I'm more like the type of character that was portrayed as a matron in old films! I did say it is hard.
I have now read your reply to my earlier post and think that you are probably acting in a similar way to me. I'm bossy with my wife, but in the nicest way possible. I haven't, and never will do anything that I will regret. I see it as tough love as I always act in my wife's interests because I'm determined to keep her as well as possible for as long as possible. I suppose I'm more like the type of character that was portrayed as a matron in old films! I did say it is hard.
Like Pete, I am the boss but I don't act like the boss unless it is necessary. My husband has a very stubborn streak and if he wants something, will push and push until I put my foot down.
I was a schoolteacher for many years so of course I am bossy. However, I use many teaching strategies in managing my husband and that means trying to be a couple of steps ahead of him, distraction (just changing the subject can help) and instead of direct instructions, I suggest things, particularly how to find things, do things etc. I endeavour to talk in a conversational tone most of the time as I find that he responds badly to a hint of grumpiness in me.
If you have kids, remember what it was like in managing them because a lot of what we do as carers is a lot like that.
If he really decides he is going to push my buttons, I don't put up with it for long and give him a blast. Better to get rid of it early than let it build. We don't discuss dementia much as he is still functioning well and he also believes quite firmly that I have it too. And just about everybody else he knows. He is quite the 'expert' on the subject so it is a little pointless trying to talk about it in a reasonable way.
I hope you find lots of help.
I was a schoolteacher for many years so of course I am bossy. However, I use many teaching strategies in managing my husband and that means trying to be a couple of steps ahead of him, distraction (just changing the subject can help) and instead of direct instructions, I suggest things, particularly how to find things, do things etc. I endeavour to talk in a conversational tone most of the time as I find that he responds badly to a hint of grumpiness in me.
If you have kids, remember what it was like in managing them because a lot of what we do as carers is a lot like that.
If he really decides he is going to push my buttons, I don't put up with it for long and give him a blast. Better to get rid of it early than let it build. We don't discuss dementia much as he is still functioning well and he also believes quite firmly that I have it too. And just about everybody else he knows. He is quite the 'expert' on the subject so it is a little pointless trying to talk about it in a reasonable way.
I hope you find lots of help.
I too am quite bossy, OH rarely has a choice about when to have a shave or shower, basically I expect him to do it when I feel up to it, but better that than letting him decide and not being clean,
imo. As I've always done the cooking, I've always planned meals too.
imo. As I've always done the cooking, I've always planned meals too.I too am quite bossy, OH rarely has a choice about when to have a shave or shower, basically I expect him to do it when I feel up to it, but better that than letting him decide and not being clean,
@Roseleigh My dad has had 3 shaves tonight while we have been watching TV He has also had 4 chocolate mousses and each one has been the 1st if you know what I mean. He has clean clothes but he has not had a proper wash for ages. I feel like I am going wrong somewhere.
I think we forget the generation gap sometimes
my mum & dad are of the tin bath infront of the fire generation. Indoor toilets & bathrooms are new experiences that happened after the 2nd world war.
it’s easy to forget this fact today, we are so used to having a shower everyday. Or two!
We can forget the generation that strip washed & shared that precious water in a tin bath infront of the fire, or kitchen range (& I’m not talking aha or Rayburn here folks !!) have formative years that are a very different experience to ours!
my mum & dad are of the tin bath infront of the fire generation. Indoor toilets & bathrooms are new experiences that happened after the 2nd world war.
it’s easy to forget this fact today, we are so used to having a shower everyday. Or two!
We can forget the generation that strip washed & shared that precious water in a tin bath infront of the fire, or kitchen range (& I’m not talking aha or Rayburn here folks !!) have formative years that are a very different experience to ours!
I have learnt to talk in a calm clear but quieter voice, leaving lots of time for my PWD to process what I say.
but..... phone calls with my Mum.....arrrghh
Now that’s a button pusher. I let mum get phone calls to her friends in before lunch - she’s more coherent & alert.... it’s all downhill from there! It’s more important that she has social contact than my sanity isn’t stretched to breaking point!
but..... phone calls with my Mum.....arrrghh
Now that’s a button pusher. I let mum get phone calls to her friends in before lunch - she’s more coherent & alert.... it’s all downhill from there! It’s more important that she has social contact than my sanity isn’t stretched to breaking point!
We are in a very similar situation husband had AZ for 7 years and quite manageable still . I tend to try and be “supportive” and think of ways to not make him feel scared and frustrated . My husband is sadly very aware and can get frustrated . So when he is washing I tend to say oh let me get your clothes whilst you are in the bathroom otherwise he would not change them . Also support him in any little job around the house/garden he would like to do , makes him feel good as he is contributing which is important . Being bossy can make the person with dementia feel worse as you pointing out the things he/she can’t do . I concentrate on on the things my husband still can do instead of what he can’t . Not being able to find words or getting confused is frightening for them hence reassurance is needed . I also give I’m space if he is cross and come back 20 min later with a cup of tea and a smile . Everyone is different though and what works for one , does not necessarily work for another . Sending understanding hugs x
Hi Morganiefay:
I feel for you there is nothing worse than having to take care of someone else when you are not feeling well yourself. Do you have any care for him other than yourself? If you don't you should get some as soon as possible. You cannot do it alone. My husband has had FTD for 5 years+ and only until this year has he started forgetting things, hallucinating, etc. etc. He also does not want to believe there is anything wrong. He has transformed into a 50% child & 50% man. I do everything for him, he doesn't appreciate it, not at all. He needs 24/7 care now. When it gets too much I just sit with a cup of tea or a glass of wine, make sure he is safe first, and then just relaxing (at least trying to). At the beginning I noticed he wasn't taking a shower so I arranged for caregivers to come in and clean him up, he loved it because all the attention was given to him, He talked to them, laughed but most of all he was getting clean from top to bottom. It gave me time to go out or just sit & see what was happening on TP. I put him to bed at 10pm and after that it's my time to just sit & unwind before going to bed I watch tv, have my cup of tea and just unwind then I go to bed and get ready for the next days adventures.
The best ideas I can give you is to take time for yourself (as much) as possible, DON'T EVER FEEL BAD, the best way to take care of him is to take care of yourself first and get him some caregivers. I found caregivers don't always have to be here with him so they tend to be more patient. If you take care of yourself the days will be less stressful and he will be calmer too???.
Take care of yourself, hope your hip replacement goes well, sending you much love & many cyber hugs. Good Luck in the future.
