Typical day. Typical week.

[B72]

No holidays for us. For years now. The change of routine has a very bad effect on my husband.

Very simple routine important and preferred. I try to get him out, at least for a coffee or to come shopping with me. He goes to balance classes every week, which he loves.

I try to keep busy, or I don’t sleep. As the weather improves, I intend to do more in the garden.

 

[Chris100]

@Chris100 We're coming up to 2.5 years since formal diagnosis though she was exhibiting symptoms (hallucinations primarily) for almost a year before that.

Same for me.

 

[Mattyshens]

Routine you say? It's like Groundhog Day around our house...

My wife's bedbound downstairs so there's no chance of travel or outings.

It's always the same time for breakfast/meds. (oh wouldn't it be lovely if I could have a lie in and have someone bring me a cuppa in bed...) Then it's the same half an hour trying to persuade her to take those meds. Her carers arrive and sort our her ablutions then she just watches the same TV repeats over and over again. Then it's lunch (which she doesn't want) then more repeat-o-TV then tea (which she also doesn't want) then a second visit by the carers, a final set of meds and bedtime for her at 9pm. I'll browse the net for a bit or maybe watch some TV before turning in at 10pm.

Twice a week the district nurses come to deal with one of her health issues then we have occasional excitement when an unplanned visit is necessary as her catheter has stopped working.

In between those times I'll try and keep myself amused with a spot of crafting or painting and a walk if the weather's nice.

On a Friday I'll call my step-daughter to have a natter for an hour or so and on Sunday I'll meet up with my other step-daughter for a walk around the local country park and a spot of breakfast.

Terrible as it sounds I don't spend much time with my wife any more - as her condition has progressed she snoozes a lot there's less and less chance of having a conversation and I can't cope with endless TV repeats (I've seen M*A*S*H in it's entirety more times in the last year than I've been to the pub...)

She's lost interest in her old hobbies and crafts and though she occasionally asks me to buy odds and sods to try (art supplies was the last one) she tires and loses interest after only a couple of attempts. Happily she's quite content to just watch TV all day.


Still, mustn't grumble

Oddly enough I would welcome the routine you have described. For me every day has a sort of structure that I use the try and ‘re-set’ things but always there are the arguments, the accusations, the denouncements to navigate that mean I end up in bed totally exhausted in every possible way - and know it will all start again tomorrow. Ground Hog Day from hell.

 

[Chris100]

Oddly enough I would welcome the routine you have described. For me every day has a sort of structure that I use the try and ‘re-set’ things but always there are the arguments, the accusations, the denouncements to navigate that mean I end up in bed totally exhausted in every possible way - and know it will all start again tomorrow. Ground Hog Day from hell.

I have tried to analyse which situations/topics create a problem and try to anticipate the problem. Hope that helps.

 

[Kevinl]

Something over 10 years for me on this site for me as a carer and that's just since I joined, do it all starting tomorrow if I could. K

 

[Chris100]

Oddly enough I would welcome the routine you have described. For me every day has a sort of structure that I use the try and ‘re-set’ things but always there are the arguments, the accusations, the denouncements to navigate that mean I end up in bed totally exhausted in every possible way - and know it will all start again tomorrow. Ground Hog Day from hell.

Sorry for you!

 

[Chizz]

Routine you say? It's like Groundhog Day around our house...

My wife's bedbound downstairs so there's no chance of travel or outings.

It's always the same time for breakfast/meds. (oh wouldn't it be lovely if I could have a lie in and have someone bring me a cuppa in bed...) Then it's the same half an hour trying to persuade her to take those meds. Her carers arrive and sort our her ablutions then she just watches the same TV repeats over and over again. Then it's lunch (which she doesn't want) then more repeat-o-TV then tea (which she also doesn't want) then a second visit by the carers, a final set of meds and bedtime for her at 9pm. I'll browse the net for a bit or maybe watch some TV before turning in at 10pm.

Twice a week the district nurses come to deal with one of her health issues then we have occasional excitement when an unplanned visit is necessary as her catheter has stopped working.

In between those times I'll try and keep myself amused with a spot of crafting or painting and a walk if the weather's nice.

On a Friday I'll call my step-daughter to have a natter for an hour or so and on Sunday I'll meet up with my other step-daughter for a walk around the local country park and a spot of breakfast.

Terrible as it sounds I don't spend much time with my wife any more - as her condition has progressed she snoozes a lot there's less and less chance of having a conversation and I can't cope with endless TV repeats (I've seen M*A*S*H in it's entirety more times in the last year than I've been to the pub...)

She's lost interest in her old hobbies and crafts and though she occasionally asks me to buy odds and sods to try (art supplies was the last one) she tires and loses interest after only a couple of attempts. Happily she's quite content to just watch TV all day.


Still, mustn't grumble

Hi @extoyboy
My day to day is v much as you describe, but we don't have the District Nurse, unless there's something specific that's wrong.
In the morning I put on the iPad to play for my OH one the many playlists I've put on it, so we only have the tv on from early afternoon. I'm not quite sure why I put it on, because my OH can't really follow it.
I have to feed my wife everything she eats and drinks as she can't handle cutlery, etc
I hide my OH's meds in her cereal and she takes them without really noticing. Same in the evening.
I do get respite - a sitter from Mind UK for 3 hrs on a Wednesday morning, and son no.2 comes every Thurs evening (unless he can't because of work) so I go out and pay bridge.
I keep in touch with my old group of mates by a weekly zoom meeting; and with my other old friends and my OH's old friends by phone calls - I have a rota to spread them out. Inviting people to our house for a tea and chat has, over the years, mainly gone by the board, save for some long standing friends I just can't shake off!
As the spring advances I'll spend more time in the garden.

Best wishes

 

[Chris100]

Hi @extoyboy
My day to day is v much as you describe, but we don't have the District Nurse, unless there's something specific that's wrong.
In the morning I put on the iPad to play for my OH one the many playlists I've put on it, so we only have the tv on from early afternoon. I'm not quite sure why I put it on, because my OH can't really follow it.
I have to feed my wife everything she eats and drinks as she can't handle cutlery, etc
I hide my OH's meds in her cereal and she takes them without really noticing. Same in the evening.
I do get respite - a sitter from Mind UK for 3 hrs on a Wednesday morning, and son no.2 comes every Thurs evening (unless he can't because of work) so I go out and pay bridge.
I keep in touch with my old group of mates by a weekly zoom meeting; and with my other old friends and my OH's old friends by phone calls - I have a rota to spread them out. Inviting people to our house for a tea and chat has, over the years, mainly gone by the board, save for some long standing friends I just can't shake off!
As the spring advances I'll spend more time in the garden.

Best wishes

Hi @extoyboy
My day to day is v much as you describe, but we don't have the District Nurse, unless there's something specific that's wrong.
In the morning I put on the iPad to play for my OH one the many playlists I've put on it, so we only have the tv on from early afternoon. I'm not quite sure why I put it on, because my OH can't really follow it.
I have to feed my wife everything she eats and drinks as she can't handle cutlery, etc
I hide my OH's meds in her cereal and she takes them without really noticing. Same in the evening.
I do get respite - a sitter from Mind UK for 3 hrs on a Wednesday morning, and son no.2 comes every Thurs evening (unless he can't because of work) so I go out and pay bridge.
I keep in touch with my old group of mates by a weekly zoom meeting; and with my other old friends and my OH's old friends by phone calls - I have a rota to spread them out. Inviting people to our house for a tea and chat has, over the years, mainly gone by the board, save for some long standing friends I just can't shake off!
As the spring advances I'll spend more time in the garden.

Best wishes

Thanks. Useful info there.

 

[annieka 56]

I don't know the norm for caring for a sufferer. I had thought we might get a holiday break ( 1st in 5 years) but life is best kept to a known routine ( loss of sleep in a hotel does not appeal ). 'A routine day ' is a bit unfair but experience has taught me that ' the unexpected ) is not welcome. It may sound ' controlling' but repetitive days are less stressful. A day at the supermarket and SUBWAY are ' known ' excursions.
How does this compare with other carers, please?

 

[annieka 56]

Hello. I would say, for as long as you can go out together, even if it's repetitive, make the most of it.
My husband's diagnosis was in 2018 ( symptoms since 2014.)
Our best time with limitations was 10 months that ended in August last year.
We went out once sometimes twice a day for a drive that he enjoyed even if it was dependent on the car radio. Initially we would get out and have a little walk in a park until getting in and out of the car became tricky.
Eventually it became impossible - he just forgot how to get in the car.

 

[Chizz]

Yes @annieka 56 we went through that stage/phase. My OH developed a fear of doing some things (probably when she didn't feel safe, or maybe when she realised it was getting too difficult and didn't want to show herself up)/ Result was that although she was able to get in and out of the car etc, she became wary of doing this. It got to the stage when it would take me 40 mins or so to persuade to get into the car at this end and 40 mins to get out of the car at the other end of the journey. That was a few years ago now. She's forgotten how to walk, and cannot weight bear - been like that now since July 2022! We can't go anywhere.

For those of you who can still get your PWD into and out of car for trips to the memory singers, or the memory cafe, or for a walk in the park, etc or even on holiday please keep doing these things as much as you can for as long as you can, because like with my OH the chances may pass and then disappear.

Best wishes

 

[zantefan]

I often sing to my wife "Me and my Shadow, strolling down the avenue". It always makes her laugh. Doesn't stop her though!
But I am very aware that a mostly complaint shadow is a lot easier than some of the aggression that others on this forum are experiencing.

Just the same with me... she sticks to me like glue! But at least she's a cheerful soul and appreciates (and thanks me for) everything I do for her. Could be a lot worse!

 

[Silversally]

No holidays for us. For years now. The change of routine has a very bad effect on my husband.

Very simple routine important and preferred. I try to get him out, at least for a coffee or to come shopping with me. He goes to balance classes every week, which he loves.

I try to keep busy, or I don’t sleep. As the weather improves, I intend to do more in the garden.

Wishing you lovely weather for your gardening 🌻

 

[maggie6445]

Just the same with me... she sticks to me like glue! But at least she's a cheerful soul and appreciates (and thanks me for) everything I do for her. Could be a lot worse!

Yep, I have a compliant pleasant shadow too . 😘

 

[Chizz]

Some while ago, as I was feeding my OH breakfast, she looked at me and said "Aren't you someone I used to like?"
You've gotta smile.
I'll take that as recognition!
It could have been worse - I could have been someone she didn't like!