It's life Jim - but not as we know it!

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
Does your OH fall asleep (and stay asleep) as soon as his head hits the pillow? If so, could you have an early night and then get up for some 'me time' as soon as he's in the land of nod.
I've tried a couple of times but on both occasions although I thought he was well asleep he awoke as soon as I got out of bed. Other times when that has been my intention, I'm so tired that I fall asleep too.
 

Helped

Registered User
Jul 9, 2019
34
I've intended for some time to start a thread of my own and update it from time to time which would serve as a journal of our journey with dementia. Back in August I posted about my husband always finishing his sentences with "Jim". He still does it and I'm still not sure if he's calling himself Jim or he's talking to someone else. When I posted about that @Bunpoots came up with "It's life Jim - but not as we know it!" and said how that pretty much sums up living with dementia. So I thought that would be a good title for my thread.

For some time I've been aware of a few people posting on TP about having a bit of time on their own when their LO goes to bed, and I thought "why can't I do that". Usually at a certain time in the evening my husband will turn off the TV and hint that it's time for bed. I'm usually pretty tired by then and stop whatever I'm doing and hit the sack. But occasionally I'll want to carry on with what I'm doing, usually it's something I'm trying to read. I'll suggest he goes to bed but he always says he'll wait for me, so I stop whatever I'm doing.

But last night I decided that I would finish what I was reading and he would go to bed on his own. I've pretty much had to stop reading books as I don't get to concentrate enough, but this was an article that I really wanted to read. So I firmly told him that no he wasn't going to wait for me and that he was going to bed by himself. What a joke!. It was just like a child - "I need the toilet", "I want a drink". It went on for almost an hour by which time I was too tired and worn out to read.

I've tried going to bed early in the hope of having a bit of me time in the morning, but no as soon as I'm up so is he. I do enjoy crafting which is something I can do without the constant questions and demands interfering. But reading is something I haven't been able to do for some time. I just thought I'd start my thread with a bit of a moan.
I've intended for some time to start a thread of my own and update it from time to time which would serve as a journal of our journey with dementia. Back in August I posted about my husband always finishing his sentences with "Jim". He still does it and I'm still not sure if he's calling himself Jim or he's talking to someone else. When I posted about that @Bunpoots came up with "It's life Jim - but not as we know it!" and said how that pretty much sums up living with dementia. So I thought that would be a good title for my thread.

For some time I've been aware of a few people posting on TP about having a bit of time on their own when their LO goes to bed, and I thought "why can't I do that". Usually at a certain time in the evening my husband will turn off the TV and hint that it's time for bed. I'm usually pretty tired by then and stop whatever I'm doing and hit the sack. But occasionally I'll want to carry on with what I'm doing, usually it's something I'm trying to read. I'll suggest he goes to bed but he always says he'll wait for me, so I stop whatever I'm doing.

But last night I decided that I would finish what I was reading and he would go to bed on his own. I've pretty much had to stop reading books as I don't get to concentrate enough, but this was an article that I really wanted to read. So I firmly told him that no he wasn't going to wait for me and that he was going to bed by himself. What a joke!. It was just like a child - "I need the toilet", "I want a drink". It went on for almost an hour by which time I was too tired and worn out to read.

I've tried going to bed early in the hope of having a bit of me time in the morning, but no as soon as I'm up so is he. I do enjoy crafting which is something I can do without the constant questions and demands interfering. But reading is something I haven't been able to do for some time. I just thought I'd start my thread with a bit of a moan.
I understand your problem, I used to do a lot of fine needlework - the sort that needs hours of concentration, but since my husbands diagnosis I been doing less and less and now have stopped all together. This is because, no matter what the weather is like, Jim likes to go out in the car every day, so I have to think of somewhere to drive him to and it is driving me round the bend! If I don't take him he just sits in front of the TV all day and falls asleep so I feel duty bound to drive him somewhere to try to keep him stimulated. I dread the winter as there are less 'events' to take him to. Fortunately, we have had separate bedrooms for 20 years so I do get some 'me time' when I can read (I too love reading). I would also recommend audio books - you must have some time of your own as you need to recharge your batteries.
 

TNJJ

Registered User
May 7, 2019
1,054
cornwall
We've just been out for a lunchtime meal. There were thirteen of us from the flats and we went in four cars. We went to a local garden center and had a table reserved and we had table service. The food was good and my husband ate well. The only problem my husband has sometimes when he's eating is his nose runs, and he doesn't seem to notice. I had thought about not going for that reason, but I hoped it wouldn't happen. But it did. When I notice I tell him and he uses his hanky, but I don't always notice in time. At one point the lady opposite handed him a serviette. He doesn't seem to be embarrassed by it but I am.
Hi.Both of my parents do this.Apparently as you get older ,the jaw slightly misaligns so the teeth grind .So it is the nose drips.Not nice I know.Im always giving the parents hankies.
:rolleyes:
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
If I don't take him he just sits in front of the TV all day and falls asleep so I feel duty bound to drive him somewhere to try to keep him stimulated.
This is what my husband does, sit in front of the TV. Unfortunately I don't drive and his walking is so bad now that the most he can do is walk to the bus stop. I suppose I should take him on the bus more than I do. I'm not looking forward to winter.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,390
Kent
My husband got to that stage too, just sitting in front of the television.

He continued to want on a daily paper which enabled me to get out for a 20 minute daily walk to and from the paper shop. Otherwise , until I managed to get a carer, we were housebound.

Once the muscles start to waste, the mobility is affected getting in and out of cars or taxis becomes difficult.

It`s a painful process for everyone.
 

TNJJ

Registered User
May 7, 2019
1,054
cornwall
My husband got to that stage too, just sitting in front of the television.

He continued to want on a daily paper which enabled me to get out for a 20 minute daily walk to and from the paper shop. Otherwise , until I managed to get a carer, we were housebound.

Once the muscles start to waste, the mobility is affected getting in and out of cars or taxis becomes difficult.

It`s a painful process for everyone.
I always feel guilty that I don’t take dad out more.His mobility is very bad.He can only walk with a gutter frame.
So when we go out it has to be in a wheelchair,with a sickness tablet.
Then a wheelchair taxi.But to get him out I have to put out a ramp which is also heavy.
By the time I get all this organised I’m shattered.So I’m not mentioning going out much these days to be honest.

Another thing to be guilty of!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,390
Kent
Another thing to be guilty of!
No please don`t.

If your dad needs a sickness tablet to go out in a wheelchair, it`s probably not best for him. My husband couldn`t cope with a wheelchair taxi, it made him nauseous too.

We sometimes think we should be doing this, that or the other, when really at a certain stage all our people with dementia want is a bit of peace.
 

Dimpsy

Registered User
Sep 2, 2019
1,032
No please don`t.

If your dad needs a sickness tablet to go out in a wheelchair, it`s probably not best for him. My husband couldn`t cope with a wheelchair taxi, it made him nauseous too.

We sometimes think we should be doing this, that or the other, when really at a certain stage all our people with dementia want is a bit of peace.
You're right @Grannie G, it's a fine line we walk as carers. I try and take mum for a walk every day, she needs a walking stick and arm to hold onto, but I feel keeping her mobile for as long as possible is important for her physical health and makes our lives easier as well.

Some days I have to use a lot of encouragement as mum would rather sit on her bottom, but I say use it or lose it.
I dread the time when she can't walk and the next set of problems we will encounter so mobility and hydration are my key words.

PS - it might sound like it , but honestly, I'm not running a boot camp for the elderly!
 

TNJJ

Registered User
May 7, 2019
1,054
cornwall
You're right @Grannie G, it's a fine line we walk as carers. I try and take mum for a walk every day, she needs a walking stick and arm to hold onto, but I feel keeping her mobile for as long as possible is important for her physical health and makes our lives easier as well.

Some days I have to use a lot of encouragement as mum would rather sit on her bottom, but I say use it or lose it.
I dread the time when she can't walk and the next set of problems we will encounter so mobility and hydration are my key words.

PS - it might sound like it , but honestly, I'm not running a boot camp for the elderly!
Me neither!Trouble is dad asks to go out but does not realise how heavy he is..(6ft1 and 13stone).Even though he is losing weight he is still a dead weight.
But to be honest it is getting less and less.He has declined in the last week ,so I’m afraid the garden is as far as I have gone.I cannot physically do it any more.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
Dad spends all day in his chair now sleeping or watching TV and I let him because it is easier.

He is very frail and uses a frame to get to the car and then a wheelchair when we get to wherever we are going and it is all such an effort for him and for me. The only time he leaves the house now is for appointments. Getting him over the back doorstep is a nightmare for me because he is so wobbly and the front door is even worse with double steps.

I don't feel guilty because he is happy and I don't have the worry of him falling. He is declining physically but that is to be expected because of his cancer as well as the dementia.

He can still get himself around his bungalow though so not all bad.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
You're right @Grannie G, it's a fine line we walk as carers. I try and take mum for a walk every day, she needs a walking stick and arm to hold onto, but I feel keeping her mobile for as long as possible is important for her physical health and makes our lives easier as well.

Some days I have to use a lot of encouragement as mum would rather sit on her bottom, but I say use it or lose it.
I dread the time when she can't walk and the next set of problems we will encounter so mobility and hydration are my key words.

PS - it might sound like it , but honestly, I'm not running a boot camp for the elderly!
Oh my that has made me giggle! The thought of Lycra.........
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
I've intended for some time to start a thread of my own and update it from time to time which would serve as a journal of our journey with dementia. Back in August I posted about my husband always finishing his sentences with "Jim". He still does it and I'm still not sure if he's calling himself Jim or he's talking to someone else. When I posted about that @Bunpoots came up with "It's life Jim - but not as we know it!" and said how that pretty much sums up living with dementia. So I thought that would be a good title for my thread.

For some time I've been aware of a few people posting on TP about having a bit of time on their own when their LO goes to bed, and I thought "why can't I do that". Usually at a certain time in the evening my husband will turn off the TV and hint that it's time for bed. I'm usually pretty tired by then and stop whatever I'm doing and hit the sack. But occasionally I'll want to carry on with what I'm doing, usually it's something I'm trying to read. I'll suggest he goes to bed but he always says he'll wait for me, so I stop whatever I'm doing.

But last night I decided that I would finish what I was reading and he would go to bed on his own. I've pretty much had to stop reading books as I don't get to concentrate enough, but this was an article that I really wanted to read. So I firmly told him that no he wasn't going to wait for me and that he was going to bed by himself. What a joke!. It was just like a child - "I need the toilet", "I want a drink". It went on for almost an hour by which time I was too tired and worn out to read.

I've tried going to bed early in the hope of having a bit of me time in the morning, but no as soon as I'm up so is he. I do enjoy crafting which is something I can do without the constant questions and demands interfering. But reading is something I haven't been able to do for some time. I just thought I'd start my thread with a bit of a moan.
Love the title of your thread! I’d forgotten that tune but now can’t get it out of my head.... ooo that’s kylie m! My inner jukebox is on overdrive
 

White Rose

Registered User
Nov 4, 2018
353
Sometimes folk here mention something and you think: "Ah, not just me then!"

In the four years or so since I became my mother's guardian in one form or another I've read a few pages, attempting to find the satisfaction I used to find in fiction, but nothing ever sticks. I just can't let go of this reality for long enough to settle into an alternate reality.

I do listen to a lot of podcasts now though. I can have one earpiece in while getting on with other things... I guess it's a more passive form of distraction than reading, and that's all I have the mental energy for, for the time being. I've thought about audiobooks, but they're out of my pocket money range really. I suppose I could buy an audio version of War and Peace and listen to that for the next decade. Who knows, it might even help me get to sleep!

Not that getting to sleep is my problem. My problem's being allowed to stay asleep!

Anyway, yes, reading... I make do with reading the ingredients on the food I shouldn't be comforting myself with now. When this episode of my life is over I'll have to walk so much weight off that I won't have time to read then either! :)
Hi Andrew - I wish I could send our audio books to you - maybe through via the Alzheimer's Society? My partner used to buy them but he never listened to them. We're moving house and I need to get rid of stuff. You do find them sometimes in charity shops and car boot sales.
 

White Rose

Registered User
Nov 4, 2018
353
I've intended for some time to start a thread of my own and update it from time to time which would serve as a journal of our journey with dementia. Back in August I posted about my husband always finishing his sentences with "Jim". He still does it and I'm still not sure if he's calling himself Jim or he's talking to someone else. When I posted about that @Bunpoots came up with "It's life Jim - but not as we know it!" and said how that pretty much sums up living with dementia. So I thought that would be a good title for my thread.

For some time I've been aware of a few people posting on TP about having a bit of time on their own when their LO goes to bed, and I thought "why can't I do that". Usually at a certain time in the evening my husband will turn off the TV and hint that it's time for bed. I'm usually pretty tired by then and stop whatever I'm doing and hit the sack. But occasionally I'll want to carry on with what I'm doing, usually it's something I'm trying to read. I'll suggest he goes to bed but he always says he'll wait for me, so I stop whatever I'm doing.

But last night I decided that I would finish what I was reading and he would go to bed on his own. I've pretty much had to stop reading books as I don't get to concentrate enough, but this was an article that I really wanted to read. So I firmly told him that no he wasn't going to wait for me and that he was going to bed by himself. What a joke!. It was just like a child - "I need the toilet", "I want a drink". It went on for almost an hour by which time I was too tired and worn out to read.

I've tried going to bed early in the hope of having a bit of me time in the morning, but no as soon as I'm up so is he. I do enjoy crafting which is something I can do without the constant questions and demands interfering. But reading is something I haven't been able to do for some time. I just thought I'd start my thread with a bit of a moan.
I love your title 'It's life Jim but not as we know it' - totally sums it up. Wasn't the phrase also in the song 'Star Trekking'? I have exactly the same problem as you, my partner will only go to bed when I do and then he wants to get up at the same time as I do in the morning (I usually manage to persuade him to lie in a bit longer). Luckily he goes to sleep as soon as he gets into bed so I'm able to read for a little while - though often it's only a couple of pages before I'm nodding off to sleep as well!
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
I'm not looking forward to tomorrow. My husband is due at hospital to have his cataract removed with general anaesthetic. That alone is worrying as is any operation. But first I have to get him there. Even after a meal he will raid the fridge. He's not allowed to eat after 7 a.m., keeping him out of the kitchen won't be easy. Once he's had his breakfast I will stay on guard as much as I can in the kitchen, but I anticipate that I will have to tape up the fridge door. I'll maybe stick a big sign on the door saying "KEEP OUT".

And then they'll be the "Why, where are we going?" to deal with.
 

mancmum

Registered User
Feb 6, 2012
400
I'm not looking forward to tomorrow. My husband is due at hospital to have his cataract removed with general anaesthetic. That alone is worrying as is any operation. But first I have to get him there. Even after a meal he will raid the fridge. He's not allowed to eat after 7 a.m., keeping him out of the kitchen won't be easy. Once he's had his breakfast I will stay on guard as much as I can in the kitchen, but I anticipate that I will have to tape up the fridge door. I'll maybe stick a big sign on the door saying "KEEP OUT".

And then they'll be the "Why, where are we going?" to deal with.
Had to do exactly the same. Check with the hospital - they were happy with us arriving as early as we could provided we told them we were on the way The GA had no adverse effects on father ....in fact when I told him he had an eye patch on he said...like Nelson. Make sure the hospital give you multiple eye shields to wear afterwards. If he takes them off because they are transparent they are difficult to find I moved the cereal from its usual place to inside the washing machine or something like that. I found father a little high afterwards and even though we had been up at six he was still pretty hyper at 9.00 p.m. while I was shattered. Father had no ill effects other than refusing to believe he had had an operation. keeping the eye shield on was difficult. Get micropore tape..our hospital doesn't tell you you need that so there you are discharged, knanckered needing to get supplies of micropore. Get a gauze bandage wrap head like tutankhamun and then micropore the eyeshield on. Th
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
Had to do exactly the same. Check with the hospital - they were happy with us arriving as early as we could provided we told them we were on the way The GA had no adverse effects on father ....in fact when I told him he had an eye patch on he said...like Nelson. Make sure the hospital give you multiple eye shields to wear afterwards. If he takes them off because they are transparent they are difficult to find I moved the cereal from its usual place to inside the washing machine or something like that. I found father a little high afterwards and even though we had been up at six he was still pretty hyper at 9.00 p.m. while I was shattered. Father had no ill effects other than refusing to believe he had had an operation. keeping the eye shield on was difficult. Get micropore tape..our hospital doesn't tell you you need that so there you are discharged, knanckered needing to get supplies of micropore. Get a gauze bandage wrap head like tutankhamun and then micropore the eyeshield on. Th
Thanks for the heads-up, gratefully received.