Pulling everything together

[Amy in the US]

Someone in one of my support groups or workshops (or somewhere!) told me once, "if you ask dementia, or a person with dementia, for permission, you'll wait forever."

It's a fair point! If I ask my mother if she wants something (to wear, to eat, to do, to go, to watch, to take her meds, to bathe, to sleep, anything at all), her answer is almost always no. But if I just hand her the food or drink or shirt, she'll go along with it. Often I say nothing at al, or just one or two words (she isn't processing verbal directions as well these days).

It was hard to learn not to ask her permission, even just in a polite, routine way, and not to discuss anything with her, to just do it. But I find so often with dementia, that is exactly what we have to do, just get on with it.

So yes, just buy the paints, or get the sitter, or sign up for day care, without asking and without discussion. Or rather, talk to us about it all you like, and then get on with what needs doing. Best wishes.

 

[carolynp]

Someone in one of my support groups or workshops (or somewhere!) told me once, "if you ask dementia, or a person with dementia, for permission, you'll wait forever."

It's a fair point! If I ask my mother if she wants something (to wear, to eat, to do, to go, to watch, to take her meds, to bathe, to sleep, anything at all), her answer is almost always no. But if I just hand her the food or drink or shirt, she'll go along with it. Often I say nothing at al, or just one or two words (she isn't processing verbal directions as well these days).

It was hard to learn not to ask her permission, even just in a polite, routine way, and not to discuss anything with her, to just do it. But I find so often with dementia, that is exactly what we have to do, just get on with it.

So yes, just buy the paints, or get the sitter, or sign up for day care, without asking and without discussion. Or rather, talk to us about it all you like, and then get on with what needs doing. Best wishes.

Yes Amy exactly! I feel like the Little Dictator and often I can’t recognise myself. But less wear and tear is the result. Democracy out the window, roll on autocracy of carers!

 

[imsoblue]

You are correct about the "therapy." At his diagnosis meeting, the neuropsychologist said "talk therapy" was certainly out of the question because he wouldn't remember what was said from week to week. However, he suggested "behavioral activation" which takes the negative events (things you cannot do) and suggests positive, rewarding behaviors that the person is able to do. The therapist didn't just state what he couldn't and shouldn't do without offering better alternatives. He would not listen to any alternative. He wants to do what he wants to do and if he can't, then he wants me to do it for him.
As one of my friends stated "he's too smart right now" to get away with many "love lies." He not distractible yet.
I am so glad you mentioned a new thing to do. I offered to buy him a paint set. "No, don't waste your money," he said. But, I think I will anyway. His hands don't work real well but it might be a good hobby for him. I'll tell him to paint a golf course! Thanks @canary.

Someone in one of my support groups or workshops (or somewhere!) told me once, "if you ask dementia, or a person with dementia, for permission, you'll wait forever."

It's a fair point! If I ask my mother if she wants something (to wear, to eat, to do, to go, to watch, to take her meds, to bathe, to sleep, anything at all), her answer is almost always no. But if I just hand her the food or drink or shirt, she'll go along with it. Often I say nothing at al, or just one or two words (she isn't processing verbal directions as well these days).

It was hard to learn not to ask her permission, even just in a polite, routine way, and not to discuss anything with her, to just do it. But I find so often with dementia, that is exactly what we have to do, just get on with it.

So yes, just buy the paints, or get the sitter, or sign up for day care, without asking and without discussion. Or rather, talk to us about it all you like, and then get on with what needs doing. Best wishes.

Amy, you have given me Carer Power! Maybe it is difficult to make decisions in the dementia mind so "no" is easiest to say. What am I saying??? I've done this before and he insists on being in control. Although the new sitter was already hired for today, he insisted on interviewing her. I said it wasn't necessary, the service had already interviewed her. My support group reminded me that he wants to make his own choices so let him. When she arrived I reminded him he wanted to interview her. So, first question: Do you cook? She answered yes. We don't need her to cook. Second question: How to you spell Uretha?" He thought that was her name. It wasn't. She spelled her name correctly. That was it for the questions. Maybe it is getting funny. Maybe I can laugh. Maybe my stress is easing and I can find humor. But yes, I'm also going to (sorry major corporation...I too am from the USA) I will JUST DO IT.

 

[imsoblue]

Yes Amy exactly! I feel like the Little Dictator and often I can’t recognise myself. But less wear and tear is the result. Democracy out the window, roll on autocracy of carers!

We need tee shirts printed!

 

[carolynp]

We need tee shirts printed!

Agree re tee shirts!

Though at the moment, I can see OH is squaring up to refusing to eat the (interesting, varied, protein rich, plus fresh veg., small unfrightening portions but lots of them), MEAL that I have prepared, because he’s in a bad mood because I asked him to clear something up that’s in the wrong place YET AGAIN, and I think it’s going to take more than a tee to talk me down. Lots of love to all proto dictators posting here at present. More strength to our elbows! Maybe we’ll learn to love it???

 

[Grahamstown]

I have been at it today, getting my previously gardening keen OH to help tidy the patio and small piece of grass to much negative noise and a huge sigh as he collapsed into his chair. Oh and the windows too!

 

[carolynp]

Amy, you have given me Carer Power! Maybe it is difficult to make decisions in the dementia mind so "no" is easiest to say. What am I saying??? I've done this before and he insists on being in control. Although the new sitter was already hired for today, he insisted on interviewing her. I said it wasn't necessary, the service had already interviewed her. My support group reminded me that he wants to make his own choices so let him. When she arrived I reminded him he wanted to interview her. So, first question: Do you cook? She answered yes. We don't need her to cook. Second question: How to you spell Uretha?" He thought that was her name. It wasn't. She spelled her name correctly. That was it for the questions. Maybe it is getting funny. Maybe I can laugh. Maybe my stress is easing and I can find humor. But yes, I'm also going to (sorry major corporation...I too am from the USA) I will JUST DO IT.

Hi imsoblue I’m just so sorry about the behaviour you’ve been enduring as described in your last two or three posts. The therapy session, your stepdaughter’s unhelpful (!) reaction, and now this excruciating interview business. I’m amazed you’re still sane, I’d be so worked up! Oh and by the way I thought that was very funny about getting him to paint a golf course! You gave me my one good laugh of the day, yesterday, and I was SO glad of it! All love, C.

 

[carolynp]

I have been at it today, getting my previously gardening keen OH to help tidy the patio and small piece of grass to much negative noise and a huge sigh as he collapsed into his chair. Oh and the windows too!

Oh so funny! The other day I finally asked mine to get up and do something after I’d been cleaning, washing etc etc etc after our return from Sydney, for hours from early morning onwards, while he sat outdoors and enjoyed the sun. His furious response? “When I’ve been working ALL DAY!”

 

[imsoblue]

Oh so funny! The other day I finally asked mine to get up and do something after I’d been cleaning, washing etc etc etc after our return from Sydney, for hours from early morning onwards, while he sat outdoors and enjoyed the sun. His furious response? “When I’ve been working ALL DAY!”

Now that made me laugh! "Working all day!" Yesterday after my 8 hour stint at work I called to tell OH that I was going by granddaughters (age 3 and 1) house to get a car seat and visit awhile The sitter had left at 4. Asked him if he wanted to come. Nope, watching golf. I'll be fine he said. But, at about 6PM, I get the text asking why I'm not home. Not that he didn't know where I was, but that HE was hungry. I guess the 2 hour nap took a lot out of him. That sounded cruel. But I'm mad. This coming Friday night I want to spend the night with my grandson (age 3) in another town and watch his baseball game Saturday morning. He refuses to come with me. I can't leave him alone. He refuses a sitter. (Hmmm, I know, just hire one anyway.) The reality of being burdened by this disease even more is taking its toll. My work also requires overnight travels so I guess this is the time to engage an evening sitter. I might have to call another family meeting for reinforcements. Today I should receive the emergency button you wear around your neck in case you fall. He has adamantly refused it before. His brother offered to fund it and order it. No, thank you. Well, I called his brother and said, send it on! Not looking forward to that confrontation. I'd hoped to have received it yesterday since The daughter comes today to visit. If she tells him to wear it he would. He thinks she is the only one interested in helping him. Even went so far as to try to change her to his Power of Attorney!!! However, he hasn't followed her regime of meditation, stretching, eating healthier, drink lemon water, and on and on.
And @carolynp I appreciate your recognizing my burdens. And everyone on TP. I did have a good talk with my daughter in law yesterday and she's well aware of OH's daughter denial mode. That offered me some comfort.

 

[Grahamstown]

Strange evening which went downhill rapidly but ended up Ok. Trying to go out for an evening dinner with friends and colleagues which we haven’t been able to do for a long time, he started off by swigging wine from the bottle before we had even left the house while I was getting ready but I caught him at it. Then he begged and begged for drinks before dinner but I was able to keep him on juice. He wanted wine all the time through the dinner but again managed to keep him to two small glasses. He got very tired all of a sudden so we came home early and he was not in too bad shape. I feel exhausted with the strain of having to keep tabs on him all evening. At one point he snuck off supposedly to go to the toilet and I thought that I had better follow him and he was at the drinks table but had to carry on past when he realised I was there. People were so good and accommodating that I had a much more enjoyable evening than I had anticipated, because I had been dreading it. He was able to talk about work which he can remember even though it was a bit repetitive. He can barely remember any of the evening now, couldn’t remember some people he knew quite well and tried to go through a private door that was not the right way in a place he is quite familiar with. He is home, in bed and happy so job done. It is a terrible strain trying to be in a social situation with a PWD. The change from a year ago is huge because then he would have been a normal person enjoying a night out, enjoying a few drinks with no ill effects, it makes you realise how he has changed and I mustn’t look ahead.

 

[imsoblue]

Strange evening which went downhill rapidly but ended up Ok. Trying to go out for an evening dinner with friends and colleagues which we haven’t been able to do for a long time, he started off by swigging wine from the bottle before we had even left the house while I was getting ready but I caught him at it. Then he begged and begged for drinks before dinner but I was able to keep him on juice. He wanted wine all the time through the dinner but again managed to keep him to two small glasses. He got very tired all of a sudden so we came home early and he was not in too bad shape. I feel exhausted with the strain of having to keep tabs on him all evening. At one point he snuck off supposedly to go to the toilet and I thought that I had better follow him and he was at the drinks table but had to carry on past when he realised I was there. People were so good and accommodating that I had a much more enjoyable evening than I had anticipated, because I had been dreading it. He was able to talk about work which he can remember even though it was a bit repetitive. He can barely remember any of the evening now, couldn’t remember some people he knew quite well and tried to go through a private door that was not the right way in a place he is quite familiar with. He is home, in bed and happy so job done. It is a terrible strain trying to be in a social situation with a PWD. The change from a year ago is huge because then he would have been a normal person enjoying a night out, enjoying a few drinks with no ill effects, it makes you realise how he has changed and I mustn’t look ahead.

I know how you feel. What I would give for OH to be like he was a year ago. Just know there are others like you.

 

[Grahamstown]

Another morning, another day, a day of two halves. Jekyll and Hyde have nothing on the PWD. This morning all the struggle is worth it because he is relatively normal, but this evening it will be a different story. I have noticed that he is a bit better after a long period of struggle to keep the alcohol intake down, he sleeps better and is generally brighter. The watering down with a no alcohol wine seems to be working and has not been commented on. I am going out with a friend this afternoon and won’t be back until about 6.30pm, so I am a bit anxious but the ‘wine’ should not do too much harm, it’s the pub I worry about but it’s no good saying anything. If this causes trouble then I shall definitely have to get a sitter, but being the afternoon I am taking a chance.

 

[Grahamstown]

What do you do when you are at your wits end with a partner who is totally out of it? You login to the forums and offload. I called him from the cinema at 5.50 but there was no reply nor from his mobile, but he doesn’t answer it anyway, and I couldn’t locate it. I thought he is either alright at the pub or in the hospital. So I took my friend home and when I was driving home, not far, I just thought I wish I could walk away. He was there when I got home, obviously had been drinking and saying that he was getting worried about me and where was I!! He was at the pub and I suppose I knew he would seize his chance. He has gone to his room, or been sent would be more accurate, so that I don’t have to lose my temper as you would under ‘normal’ circumstances. He can’t understand that if he had been at home he would have got my telephone call and wouldn’t have to worry. I feel so upset and let down that the first thing he does when I am out is do the very thing he agreed not to do. But he is not normal, he can’t help it and doesn’t really know what he is doing, but he is aware enough to do something that he knows would upset me when he has the opportunity. I can now have a quiet evening without him because at the moment I can’t bear the sight of his flushed face and wheedling ways. Tomorrow he will have forgotten all about it and we begin another day of two halves. I do feel a bit better now, thank you Talking Point.

 

[Grahamstown]

Another thought or two, should I feel grateful that I can actually go out and leave him even though it’s risky, or should that be it and I can never go out again late afternoon and evening without a sitter. I am forced to wonder if the time will come when I can’t get out at all without another carer. This has all happened so rapidly and quite the opposite of what we were hoping to do.

 

[canary]

(((((((((((((((hugs)))))))))))))) @Grahamstown
Yes, they will do things that they want when they know that you wont be around to stop them. They want what they want and are unable to understand/care what the affects will be.
And they dont understand how you know.........

 

[Grahamstown]

(((((((((((((((hugs)))))))))))))) @Grahamstown
Yes, they will do things that they want when they know that you wont be around to stop them. They want what they want and are unable to understand/care what the affects will be.
And they dont understand how you know.........

Thank you @canary very consoling and that is what I thought and I can deal with it but not with much pleasure because he is no longer a person I recognise when he is like this. P.S. and no he didn’t understand how I could know!

 

[canary]

Yes, I understand

 

[imsoblue]

Another thought or two, should I feel grateful that I can actually go out and leave him even though it’s risky, or should that be it and I can never go out again late afternoon and evening without a sitter. I am forced to wonder if the time will come when I can’t get out at all without another carer. This has all happened so rapidly and quite the opposite of what we were hoping to do.

Same boat! Because I work full time I had a handyman and a housekeeper coming in to do their jobs, but also make sure he was okay. We have finally reached a point where a sitter now comes 3 times a week 10-4 (he sleeps late and it's a 6 hour minimum.) His daughter comes one day, leaving one day alone. Since his current decline, he hasn't been alone much and the handyman is coming on his alone day. If the sitter is here until 4, I figure I may be able to do some evening events. However, as I posted earlier, he wanted his dinner when I attempted to visit grandchildren one evening.
He also came with me out of town for one night to visit my middle son's family. I saw he texted his daughter "this is the last time I come here." I will not let it be my last time. We must continue to live our lives. He will have to have a sitter though. It would have been a less stressful evening away if I had left him home.
A sitter eases your mind, but it hurts your pocketbook. And your heart...because you are now aware of how bad off OH is.
Y'all are not alone, ladies. I'm so glad I found y'all. Of course, there's no one around me that is living what I am.

 

[carolynp]

What do you do when you are at your wits end with a partner who is totally out of it? You login to the forums and offload. I called him from the cinema at 5.50 but there was no reply nor from his mobile, but he doesn’t answer it anyway, and I couldn’t locate it. I thought he is either alright at the pub or in the hospital. So I took my friend home and when I was driving home, not far, I just thought I wish I could walk away. He was there when I got home, obviously had been drinking and saying that he was getting worried about me and where was I!! He was at the pub and I suppose I knew he would seize his chance. He has gone to his room, or been sent would be more accurate, so that I don’t have to lose my temper as you would under ‘normal’ circumstances. He can’t understand that if he had been at home he would have got my telephone call and wouldn’t have to worry. I feel so upset and let down that the first thing he does when I am out is do the very thing he agreed not to do. But he is not normal, he can’t help it and doesn’t really know what he is doing, but he is aware enough to do something that he knows would upset me when he has the opportunity. I can now have a quiet evening without him because at the moment I can’t bear the sight of his flushed face and wheedling ways. Tomorrow he will have forgotten all about it and we begin another day of two halves. I do feel a bit better now, thank you Talking Point.

Dear One, this just gets more and more impossible for you! My OH also does the sneaky thing while my back’s turned. It makes me feel so ghastly, like a gaoler or worse. My OH insists on ringing his sister on her mobile, despite her being still very ill in hospital. Her daughters have to answer and even they have started asking him to call them instead, but he pleads confusion and they give up. I stopped him doing it but he just waited till I was out, so now I fear they will think I am not doing my bit to relieve them, but I’ve decided I can’t be worried, it’s all too much for me and when he starts playing up like this I just want to throw up my hands and leave.

What you describe makes me think, as I’ve thought before re my OH, that at present, sorry as I am to have to say this, we are both dealing with early adolescent boys, say 13 to 14 year olds, with all the self-interested duplicity of that stage, the sheer lumpen wilful ignorance. Not for nothing was Adrian Mole’s first diary written when he was thirteen and three quarters!

 

[Grahamstown]

@carolynp you are as comforting as ever and I hope you are having a good day. My day of two halves continues, with a ‘normal’ morning and the tribulations of last night forgotten. My strategy did work, by not having to deal with him for the rest of the evening I avoided a useless argument and futile reasoning with someone who can’t. This morning he is well and he has been into his office but exhausted when he got home. He couldn’t login to his emails there and now I think that the wrong password has been used yet again. Sometimes I think ‘have I got it wrong, is he really ok?’, and then these abnormal things happen and I know and my heart sinks. I have to count my blessings though because others have a much heavier burden. Hugs all round I think! You are right about the boys idea because my daughter says oh just like her son who is 12! He will grow up hopefully, but our OHs just grow down.