I think I know where I am going wrong !!!

[Rosie4u]

I had a realisation today as I was trying to persuade my husband to get in the car to go home - and getting quite stressed about it.
I'm still trying to have a 'normal' life !!!!
So what if he damages / breaks all the thinks we have looked after for years - they are his !!
So what if he eats snacks all day and wont eat dinner - he is an adult and has a choice !!
So what if everything get 'put away' - hes always been the tidy one
So what if he shouts at me when I'm trying to help

So what !!

 

[Canadian Joanne]

Kudos to you for a realization which, if you can do, will make your life less stressful.

Yes, what does it really matter in the big scheme of things when or what he eats, breaks things, puts things "away"? What's important is to make life for both of you as easy and stress-free as is possible in the circumstances.

 

[Rosie4u]

Kudos to you for a realization which, if you can do, will make your life less stressful.

Yes, what does it really matter in the big scheme of things when or what he eats, breaks things, puts things "away"? What's important is to make life for both of you as easy and stress-free as is possible in the circumstances.

Yes, it’s hard to watch him ruin things he’s been so proud of. I’m packing away many ornaments that it would upset me if they were broken and I’m learning how to be late and disorganised. What I didn’t realise at the beginning of this is that I would need a personality realignment. The planning and organising me does try to get out from time to time.

 

[Justmary]

I had a realisation today as I was trying to persuade my husband to get in the car to go home - and getting quite stressed about it.
I'm still trying to have a 'normal' life !!!!
So what if he damages / breaks all the thinks we have looked after for years - they are his !!
So what if he eats snacks all day and wont eat dinner - he is an adult and has a choice !!
So what if everything get 'put away' - hes always been the tidy one
So what if he shouts at me when I'm trying to help

So what !!

You are absolutely right! I think I've been heading in that direction, but I hadn't had the actual moment of realisation. It'll still be difficult to remain calm no matter what, but if I'm not expecting normal behaviour it might be slightly easier. Ok, bring on tomorrow.

 

[LadyA]

Well done, @Rosie4u . Until he went to a Nursing Home, I tried to take my husband out every day. He loved going for tea and cake (well, let's be honest. He wasn't fussed about the tea! ), so I brought him. At least I knew he would eat the cake! Sometimes, if they had both chocolate fudge cake and lemon meringue pie, I would get a piece of both, on the pretext that one was for me. I'd eat a bite or two, and then he would finish mine after eating his own. I didn't care, because often, that was all he would eat! Eventually, I had difficulty getting him in and out of the car. I used to put a bright coloured cloth on the floor of the car (which, to a pwd, can look like a very deep, dark hole), and that helped. To get him out, (again, a depth perception issue. No idea how far away the ground was), I kept a bright coloured mat in the car, and put that down on the ground beside his door. Once his feet were on that, I was able to lift him out.

My husband's thing was books. He had, quite literally, wall to wall, floor to ceiling books in one room. He'd always been a great reader, and loved his books. Afterwards, when I was clearing things out of that room (and finding loads of food hidden in the bookshelves, in between pages of books, under shelves, etc. etc.! ) I found that a lot of the books were ruined. As he had lost his ability to read or understand what he was reading, he either scribbled on or just tore out, pages from the books! Boxes & boxes of books just went to be recycled! But, he had enjoyed them while he had them.

So, yes. put away anything precious, and anything that you would like to have later. And then go with the flow, as much as you can!

 

[Grannie G]

I found that a lot of the books were ruined. As he had lost his ability to read or understand what he was reading, he either scribbled on or just tore out, pages from the books!

My mother did this with photograph albums. She cut photos and rearranged them to make montages, she wrote the dates on the front and threw away those she didn`t recognise.

So many lovely photos of long dead family members simply vanished including my grandmother's wedding photographs which were absolutely lovely.

 

[WA123]

I've found going with the flow so much more relaxing for both of us. It has removed lots of unnecessary causes of stress and in turn my husband's head seems to have cleared. For example he kept losing car keys so I bought a device to help find them. Since we got it around 6 months ago he hasn't lost the keys once. It was the thought that he might not be able to find them that was stressing him out so much that he couldn't remember where he kept them. Now he knows that if he does lose them they are easily traceable and he has relaxed. I think acceptance is the key. When you accept that life is no longer as it was everything can suddenly seem clearer.

 

[Jean1234]

Looking back I now realise how much I used to get stressed about unimportant things. OH is now in a CH and I wish I had the time again with him at home so that I could re run the time in a more devil may care attitude. Seeing how things are done in the CH has shown me where I went wrong. Perhaps it would be useful for Carers to spend a day in a good CH to learn how to cope with the day to day difficulties of caring for a PWD! The trouble is we are all so tired in that situation and thrown in at the deep end as it were. I know I was offered to go on a course to learn how to be a carer for my OH but the problem was I had no one else to care for him so I couldn’t go. So I just muddled through and now looking back I can see where I went wrong. As Rosie4u says - nothing really matters if they do odd things. Just being together and giving them love is what is important. Hard to do I know from experience when you’ve had no more than three hours broken sleep a night but I wish I knew then what I know now.

 

[Rosie4u]

Looking back I now realise how much I used to get stressed about unimportant things. OH is now in a CH and I wish I had the time again with him at home so that I could re run the time in a more devil may care attitude. Seeing how things are done in the CH has shown me where I went wrong. Perhaps it would be useful for Carers to spend a day in a good CH to learn how to cope with the day to day difficulties of caring for a PWD! The trouble is we are all so tired in that situation and thrown in at the deep end as it were. I know I was offered to go on a course to learn how to be a carer for my OH but the problem was I had no one else to care for him so I couldn’t go. So I just muddled through and now looking back I can see where I went wrong. As Rosie4u says - nothing really matters if they do odd things. Just being together and giving them love is what is important. Hard to do I know from experience when you’ve had no more than three hours broken sleep a night but I wish I knew then what I know now.

Absolutely. I wanted to go on a course but couldnt find anyone to look after him. I still get stressed and I still want my life back sometimes but I forgive myself . I'm not naturally a devil may care person Im a 'must be right ' at heart but I'm learning

 

[Rosie4u]

Well done, @Rosie4u . Until he went to a Nursing Home, I tried to take my husband out every day. He loved going for tea and cake (well, let's be honest. He wasn't fussed about the tea! ), so I brought him. At least I knew he would eat the cake! Sometimes, if they had both chocolate fudge cake and lemon meringue pie, I would get a piece of both, on the pretext that one was for me. I'd eat a bite or two, and then he would finish mine after eating his own. I didn't care, because often, that was all he would eat! Eventually, I had difficulty getting him in and out of the car. I used to put a bright coloured cloth on the floor of the car (which, to a pwd, can look like a very deep, dark hole), and that helped. To get him out, (again, a depth perception issue. No idea how far away the ground was), I kept a bright coloured mat in the car, and put that down on the ground beside his door. Once his feet were on that, I was able to lift him out.

My husband's thing was books. He had, quite literally, wall to wall, floor to ceiling books in one room. He'd always been a great reader, and loved his books. Afterwards, when I was clearing things out of that room (and finding loads of food hidden in the bookshelves, in between pages of books, under shelves, etc. etc.! ) I found that a lot of the books were ruined. As he had lost his ability to read or understand what he was reading, he either scribbled on or just tore out, pages from the books! Boxes & boxes of books just went to be recycled! But, he had enjoyed them while he had them.



So, yes. put away anything precious, and anything that you would like to have later. And then go with the flow, as much as you can!

love the patterned carpet - will give this a go.

 

[LadyA]

Looking back I now realise how much I used to get stressed about unimportant things. OH is now in a CH and I wish I had the time again with him at home so that I could re run the time in a more devil may care attitude. Seeing how things are done in the CH has shown me where I went wrong. Perhaps it would be useful for Carers to spend a day in a good CH to learn how to cope with the day to day difficulties of caring for a PWD! The trouble is we are all so tired in that situation and thrown in at the deep end as it were. I know I was offered to go on a course to learn how to be a carer for my OH but the problem was I had no one else to care for him so I couldn’t go. So I just muddled through and now looking back I can see where I went wrong. As Rosie4u says - nothing really matters if they do odd things. Just being together and giving them love is what is important. Hard to do I know from experience when you’ve had no more than three hours broken sleep a night but I wish I knew then what I know now.

But it doesn't really work that way. I'm a fully trained Care Assistant, with additional courses done in Dementia Care and Care of the Elderly! It may have helped a bit with dealing with some things with my husband, but not a huge amount. It helped me recognise things. Sometimes, it helped me deflect or work around situations. But honestly? One person cannot do the work of a fully equipped, fully staffed nursing home, where staff can do their shift and go home and relax! Where they have other people, who do not have dementia, around them as they work. people they can get help from and ask questions if necessary. And of course, the simple fact was that no matter how well trained, my husband did not want me helping him with toiletting, washing or dressing, and could be very aggressive and violent about it. Wet, dirty pads need to be changed, no matter whether the person wants it or not. Some things (a lot of things, actually) can be let go, and don't really matter. Some things just can't.
And you could keep going if you had the odd night of only 3 hours broken sleep. But when that becomes a regular pattern, then no, you just can't. The whole house of cards starts to collapse. You did your best with what you had, @Jean1234, and nobody can do more than that.

 

[LadyA]

love the patterned carpet - will give this a go.

Not patterned, Rosie, because a pattern, to a pwd, can look like a very uneven surface. Just a bright colour, that contrasts with the ground or the floor of the car.

 

[kindred]

Looking back I now realise how much I used to get stressed about unimportant things. OH is now in a CH and I wish I had the time again with him at home so that I could re run the time in a more devil may care attitude. Seeing how things are done in the CH has shown me where I went wrong. Perhaps it would be useful for Carers to spend a day in a good CH to learn how to cope with the day to day difficulties of caring for a PWD! The trouble is we are all so tired in that situation and thrown in at the deep end as it were. I know I was offered to go on a course to learn how to be a carer for my OH but the problem was I had no one else to care for him so I couldn’t go. So I just muddled through and now looking back I can see where I went wrong. As Rosie4u says - nothing really matters if they do odd things. Just being together and giving them love is what is important. Hard to do I know from experience when you’ve had no more than three hours broken sleep a night but I wish I knew then what I know now.[/QUOTEJean, what a beautiful post. I do agree that it is because we are so tired it makes it harder for us to adjust. I spent about three hours every day with my husband in his nursing home and love being there and being with him, time together and with loving others. It is such a precious gift. Thank you for their post. I bet loads of us have been offered that course and could not go because who would help??
with warmest wishes, Kindred.

 

[AliceA]

I had a realisation today as I was trying to persuade my husband to get in the car to go home - and getting quite stressed about it.
I'm still trying to have a 'normal' life !!!!
So what if he damages / breaks all the thinks we have looked after for years - they are his !!
So what if he eats snacks all day and wont eat dinner - he is an adult and has a choice !!
So what if everything get 'put away' - hes always been the tidy one
So what if he shouts at me when I'm trying to help

So what !!

Yes, nothing really matters does it, except keeping our loved one safe and feeling loved. Xxx

 

[mickeyplum]

But it doesn't really work that way. I'm a fully trained Care Assistant, with additional courses done in Dementia Care and Care of the Elderly! It may have helped a bit with dealing with some things with my husband, but not a huge amount. It helped me recognise things. Sometimes, it helped me deflect or work around situations. But honestly? One person cannot do the work of a fully equipped, fully staffed nursing home, where staff can do their shift and go home and relax! Where they have other people, who do not have dementia, around them as they work. people they can get help from and ask questions if necessary. And of course, the simple fact was that no matter how well trained, my husband did not want me helping him with toiletting, washing or dressing, and could be very aggressive and violent about it. Wet, dirty pads need to be changed, no matter whether the person wants it or not. Some things (a lot of things, actually) can be let go, and don't really matter. Some things just can't.
And you could keep going if you had the odd night of only 3 hours broken sleep. But when that becomes a regular pattern, then no, you just can't. The whole house of cards starts to collapse. You did your best with what you had, @Jean1234, and nobody can do more than that.

 

[mickeyplum]

I agree that being trained to care for dementia patients doesn't always work as well when it's your own loved one. I trained and worked in childcare and thought I knew everything there was to know about children and that caring for my own babies would be a doddle - oh yes, I would go by the book and they would thrive as trouble-free kids. Surely it couldn't be that hard.
When I became a mother for the first time it was a real eye-opener when my beautiful baby refused to conform to what the experts had said. I threw out a lot of the stuff I'd learned long before my 2nd child was born.
I realised that most of the time you need to trust your instincts, try to stay sane and healthy yourself, and not beat yourself up for being less than perfect. I think the same applies when caring for a dementia patient.

 

[try again]

I've done the dementia care level 2 online and while some of it was useful most of it really is for workers in the industry. Found the you tube teepa snow ones far more relevant , and done in a caring and humorous way.

 

[maryjoan]

I had a realisation today as I was trying to persuade my husband to get in the car to go home - and getting quite stressed about it.
I'm still trying to have a 'normal' life !!!!
So what if he damages / breaks all the thinks we have looked after for years - they are his !!
So what if he eats snacks all day and wont eat dinner - he is an adult and has a choice !!
So what if everything get 'put away' - hes always been the tidy one
So what if he shouts at me when I'm trying to help

So what !!

I think it is instinctive to keep thinking life is as it was - we all do it, and then the realisation hits, that, you know what? - it's never going to be as it was.

My ever so trendy and up to date brother and sister in law are coming here just before Christmas to help celebrate my 70th - and I am worrying about what they will think of all the slightly strange things around the house that would never fit into their minimalistic shiny world - and I am just going to say to them - I know its not how you do things, but it's how things are here, so please accept us as we are......

 

[dancer12]

I agree that being trained to care for dementia patients doesn't always work as well when it's your own loved one. I trained and worked in childcare and thought I knew everything there was to know about children and that caring for my own babies would be a doddle - oh yes, I would go by the book and they would thrive as trouble-free kids. Surely it couldn't be that hard.
When I became a mother for the first time it was a real eye-opener when my beautiful baby refused to conform to what the experts had said. I threw out a lot of the stuff I'd learned long before my 2nd child was born.
I realised that most of the time you need to trust your instincts, try to stay sane and healthy yourself, and not beat yourself up for being less than perfect. I think the same applies when caring for a dementia patient.

Hi mickeyplum:

All training goes out the window (so to speak) when you think with your heart & not your head..

 

[Sammie234]

My OH used to shower every day but that has gone through the window now, and keeping on reminding him made him more stubborn, so these days I let it go for a week then just turn round and say, it’s about time you had a shower and he quite happily complies. I put out all clean clothes just to make sure he doesn’t put the old ones on. It’s easier to let go a bit than fight and stress us both out. I have worked in MH in the past but never dementia anything you learnt is all hit and miss anyway.