Typical day. Typical week.

[Chris100]

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?

 

[Agzy]

We have routines too but many based around going to Memory/Dementia groups and activities and out of the house several times a week. I am in the process of introducing he to Day Care which is extremely traumatic for both of us but then gives me 4 hours a week of time for R&R . Routines in the house are good as then she is in her comfort zone but so called ‘classic’ TV are her preferred pastime and so long lonely and boring times for me but at least peaceful.

 

[Kevinl]

As long as my wife could see me, no problem, soon as I left her sight she'd panic.
We'd share a shower and if I thought she looked a bit 'uncomfortable' I'd say I was going to the toilet suddenly she wanted to go too.
We'd go out on our narrowboat, she'd sit on the steps to the inside while I steered, as long as she could see me routine didn't matter.
As (I think) Charles Dickens once wrote "It was the best of times, it was the worst of times" opening line to A Tale of Two Cities? K

 

[extoyboy]

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

 

[Fugs]

@Chris100 I know what you mean, but it is a bit of a mixed bag for me. I think that one of the main things is that my wife only wants to spend time with people that she sees regularly. If you add someone new to the mix, then she goes to pieces. She no longer seems to want to see her friends as they work and so can not see her on a regular basis. As others have noted, Christmas was a strain, as it knocked our routine. But she doesn't mind going to new places as long as she is with me, and we get home before the end of the day.

 

[Chris100]

We have routines too but many based around going to Memory/Dementia groups and activities and out of the house several times a week. I am in the process of introducing he to Day Care which is extremely traumatic for both of us but then gives me 4 hours a week of time for R&R . Routines in the house are good as then she is in her comfort zone but so called ‘classic’ TV are her preferred pastime and so long lonely and boring times for me but at least peaceful.

 

[Chris100]

Thanks. That's useful.

As long as my wife could see me, no problem, soon as I left her sight she'd panic.
We'd share a shower and if I thought she looked a bit 'uncomfortable' I'd say I was going to the toilet suddenly she wanted to go too.
We'd go out on our narrowboat, she'd sit on the steps to the inside while I steered, as long as she could see me routine didn't matter.
As (I think) Charles Dickens once wrote "It was the best of times, it was the worst of times" opening line to A Tale of Two Cities? K

 

[Chris100]

As long as my wife could see me, no problem, soon as I left her sight she'd panic.
We'd share a shower and if I thought she looked a bit 'uncomfortable' I'd say I was going to the toilet suddenly she wanted to go too.
We'd go out on our narrowboat, she'd sit on the steps to the inside while I steered, as long as she could see me routine didn't matter.
As (I think) Charles Dickens once wrote "It was the best of times, it was the worst of times" opening line to A Tale of Two Cities? K

 

[Chris100]

Thanks. That's useful.

 

[Chris100]

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

Thanks. That's useful. How far are you into this time wise, years?

 

[Kevinl]

No, just just grumbling, what we're here for. K

 

[Chris100]

@Chris100 I know what you mean, but it is a bit of a mixed bag for me. I think that one of the main things is that my wife only wants to spend time with people that she sees regularly. If you add someone new to the mix, then she goes to pieces. She no longer seems to want to see her friends as they work and so can not see her on a regular basis. As others have noted, Christmas was a strain, as it knocked our routine. But she doesn't mind going to new places as long as she is with me, and we get home before the end of the day.

Thanks. That's useful. My wife cannot be without my presence.

 

[Chris100]

Thanks. That's useful.

 

[extoyboy]

@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.

 

[Harky]

@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.

 

[Harky]

@Chris100 my wife suffers hallucinations quite badly. There's a film 🎥 on film 4 on Wednesday at 9pm. I've already seen it. It's Anthony Hopkins playing the father with dementia and Olivia Coleman playing the daughter. Watching it for the first time, I got confused, wondering what was going on but I eventually realised we were watching it through his eyes. People kept coming in and out of his life giving an insight into their lives. Well worth a watch.

 

[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.

Thank you

 

[Fugs]

As long as my wife could see me, no problem, soon as I left her sight she'd panic.
We'd share a shower and if I thought she looked a bit 'uncomfortable' I'd say I was going to the toilet suddenly she wanted to go too.
We'd go out on our narrowboat, she'd sit on the steps to the inside while I steered, as long as she could see me routine didn't matter.
As (I think) Charles Dickens once wrote "It was the best of times, it was the worst of times" opening line to A Tale of Two Cities? K

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.

 

[Chris100]

Thank you!

 

[Chris100]

Thanks. That's useful. How far are you into this time wise, years?

2/3 years