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And so it goes on...

Linton

Registered User
Jul 27, 2019
143
That's very true. Because my husband had a fall during the night a few weeks ago, I'm currently accompanying him to the toilet when he needs to go. Unfortunately that can be as many as four times a night. I'm so tired.
That's very true. Because my husband had a fall during the night a few weeks ago, I'm currently accompanying him to the toilet when he needs to go. Unfortunately that can be as many as four times a night. I'm so tired.
 

Linton

Registered User
Jul 27, 2019
143
Hi @jenniferjean..I was in just the same potion.. My OH needing the loo every hour during the night and 9 or more times daily.. Could nt keep it up through exhaustion.. and the doctor recommended a visit from the incontinence nurse who said he had 'urge incontinence and we now have sheath cathatars .. The difference to our life has been meraculous.. It might be worth looking into for you both... Best of luck xxx
 

jenniferjean

Registered User
Apr 2, 2016
700
Basingstoke, Hampshire
Hi @jenniferjean..I was in just the same potion.. My OH needing the loo every hour during the night and 9 or more times daily.. Could nt keep it up through exhaustion.. and the doctor recommended a visit from the incontinence nurse who said he had 'urge incontinence and we now have sheath cathatars .. The difference to our life has been meraculous.. It might be worth looking into for you both... Best of luck xxx
Thanks. Yes, our doctor also recommended the incontinence nurse some time ago. We have been given a date in January.
 

Grahamstown

Registered User
Jan 12, 2018
1,637
East of England
The horror as well as the joy of Christmas is upon us. A card from my sister in law who has said her goodbyes to him, informs me that they are going to her estranged daughter in law’s family to help with the mother who has Primary Progressive Aphasia who is ‘not doing too well’. I am flabbergasted by her total insensitivity and lack of understanding and it makes me feel very unchristian and totally ignore her and her husband. I realise that they are doing it for their son but even so I don’t want to know. Nor do I know what to do, haven’t sent their card yet. If she wanted to hurt me deeply then she has succeeded and I doubt she would have the insight to understand.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,655
The horror as well as the joy of Christmas is upon us. A card from my sister in law who has said her goodbyes to him, informs me that they are going to her estranged daughter in law’s family to help with the mother who has Primary Progressive Aphasia who is ‘not doing too well’. I am flabbergasted by her total insensitivity and lack of understanding and it makes me feel very unchristian and totally ignore her and her husband. I realise that they are doing it for their son but even so I don’t want to know. Nor do I know what to do, haven’t sent their card yet. If she wanted to hurt me deeply then she has succeeded and I doubt she would have the insight to understand.
well that takes the biscuit!

I find if behaviour is unacceptable the best thing to do is ignore it! You have a few choices - just pretend you haven’t had the card, - tackle it head on & say you also could do with help & appreciate the difficulties, or my favourite one get really angry- have mild Tourette’s episode & get out the bleach, after a quick fortification of favourite tipple! Obviously make sure you don’t have to drive later & blitz!

I have at times a spotless house!

family huh! at least you can choose your friends!!
(((((((hugs))))))) & love! Lots of it!
Xxxxxx
 

White Rose

Registered User
Nov 4, 2018
406
The horror as well as the joy of Christmas is upon us. A card from my sister in law who has said her goodbyes to him, informs me that they are going to her estranged daughter in law’s family to help with the mother who has Primary Progressive Aphasia who is ‘not doing too well’. I am flabbergasted by her total insensitivity and lack of understanding and it makes me feel very unchristian and totally ignore her and her husband. I realise that they are doing it for their son but even so I don’t want to know. Nor do I know what to do, haven’t sent their card yet. If she wanted to hurt me deeply then she has succeeded and I doubt she would have the insight to understand.
Sadly I don't think you're alone @Grahamstown, there seems to be such a lack on understanding and really a lack of wanting to understand when it comes to dementia. Only when someone has seen it firsthand do they appreciate how incredibly difficult it is for both the Carer and the PWD. I put a piece of furniture free on Gumtree and a lovely chap collected it, said his grandfather had had Alzheimer's and watching his him go through it was heartbreaking, he offered help and tea if ever I need it (and that's from a complete stranger).
 

Grahamstown

Registered User
Jan 12, 2018
1,637
East of England
Don't send that card, send a different one - a congratulations card. Congratulations on being the most self-centred, unfeeling, ignorant (and anything else you can think of) person.
That’s a good idea, to send a different type of card not a Christmas one. I shall have a think. I don’t want to be as unfeeling as her partly because I think it would fall on deaf ears, and partly because she thinks all is back to normal now whereas, as everyone on TP knows, dementia goes on getting worse.
 

jenniferjean

Registered User
Apr 2, 2016
700
Basingstoke, Hampshire
That’s a good idea, to send a different type of card not a Christmas one. I shall have a think. I don’t want to be as unfeeling as her partly because I think it would fall on deaf ears, and partly because she thinks all is back to normal now whereas, as everyone on TP knows, dementia goes on getting worse.
I think I was being a bit harsh there, call it a gut reaction. But you've hit on a good idea there though. Send one of those cards (not Christmas) that says "Just to say" or something similar and then write on it an account of how things are with him. Tell her that you feel she's not aware of the facts and that she isn't behaving towards her brother in a sisterly way. It may fall on dear ears but it's worth a go.
 

Grahamstown

Registered User
Jan 12, 2018
1,637
East of England
I have to get it out of my system. I feel like screaming this morning and have had to tell myself ‘be kind, be kind’ several times. I know it’s all the Christmas stuff that’s making him so confused as he asks stupid things and generally annoys me beyond my capabilities. He can’t help it, he is ill but this morning I felt suddenly overwhelmed by the whole burden of everything on my shoulders, household, finances, caring and still trying to keep sane myself. It does feel better to put it all down but my goodness the task is very difficult.
 

jenniferjean

Registered User
Apr 2, 2016
700
Basingstoke, Hampshire
I have to get it out of my system. I feel like screaming this morning and have had to tell myself ‘be kind, be kind’ several times. I know it’s all the Christmas stuff that’s making him so confused as he asks stupid things and generally annoys me beyond my capabilities. He can’t help it, he is ill but this morning I felt suddenly overwhelmed by the whole burden of everything on my shoulders, household, finances, caring and still trying to keep sane myself. It does feel better to put it all down but my goodness the task is very difficult.
Sending hugs....I too feel like screaming at times. Yesterday my husband pulled out the Christmas menu, for the residents dinner, from the drawer and read it over and over again. He's done this so many times over the past weeks. I ended up taking it off him saying "you won't need this anymore as we had our Christmas dinner last Wednesday". Before I threw it away I screwed it up in my hand so hard I hurt my fingers. It was only a little annoyance but it is now one less.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,642
Kent
It does feel better to put it all down but my goodness the task is very difficult.
Yes it is and it`s highlighted during so called `festive times`. I found it made life seem more challenging than ever to the extent I opted out for both our sakes.

I remember my daughter in law sympathising with how much I was missing out. What she didn`t realise was how much more difficult it was to try to live a normal life and public holidays and celebrations more than doubled the challenges.
 

Fishgirl

Registered User
Sep 9, 2019
134
I have to get it out of my system. I feel like screaming this morning and have had to tell myself ‘be kind, be kind’ several times. I know it’s all the Christmas stuff that’s making him so confused as he asks stupid things and generally annoys me beyond my capabilities. He can’t help it, he is ill but this morning I felt suddenly overwhelmed by the whole burden of everything on my shoulders, household, finances, caring and still trying to keep sane myself. It does feel better to put it all down but my goodness the task is very difficult.
Oh how I feel your pain!
Today I dragged myself out of bed just wishing it was time to get back in. What kind of a life is that, when that’s all you’ve got to look forward too! There’s so much needs doing to the house, blocked gutter, porch roof leaking, broken fence.
His sister died a few weeks ago and one of his invisible brothers came to tell us, it didn’t even register with hubby, he just said some rubbish about the dog being on the roof! I said I would try and get him to the funeral but then on the day he’d started with a bad chest infection and it was torrential rain, so being as he has C.O.P. D
I didn’t dare risk taking him out. I did ring his niece to explain but she was very off hand and we haven’t heard from the brothers or his sisters family since, so I think they’re not speaking to us now! It’s all too much to cope with sometimes and today I just want to cry, but I can’t because that will confuse him and make life even harder :( xxx
 

Grahamstown

Registered User
Jan 12, 2018
1,637
East of England
Oh how I feel your pain!
Today I dragged myself out of bed just wishing it was time to get back in. What kind of a life is that, when that’s all you’ve got to look forward too! There’s so much needs doing to the house, blocked gutter, porch roof leaking, broken fence.
His sister died a few weeks ago and one of his invisible brothers came to tell us, it didn’t even register with hubby, he just said some rubbish about the dog being on the roof! I said I would try and get him to the funeral but then on the day he’d started with a bad chest infection and it was torrential rain, so being as he has C.O.P. D
I didn’t dare risk taking him out. I did ring his niece to explain but she was very off hand and we haven’t heard from the brothers or his sisters family since, so I think they’re not speaking to us now! It’s all too much to cope with sometimes and today I just want to cry, but I can’t because that will confuse him and make life even harder :( xxx
I feel your pain too because today the exertions of the past week, coping with him, celebrating, getting Christmas cards finished, doing a tiny amount of Christmas decorations, juggling friends and family, coping with some family members, all became too much here alone. But we are not alone with kind people on here who really know whatever the severity of their loved ones illness. I am feeling now that I just have to get through the next two weeks and then back to the usual round. Seeing one’s previously strong, clever, loving husband reduced to the shambling skeletal person with a wrecked mind, does sometimes overcome the carer I have become as I feared two years ago when I first joined the forum. It is brought into focus by well meaning friends who think he can still do normal things like go to a mince pie party, jolly, noisy, and chatting; I went alone for half an hour or so, but I found even that little pleasure a poisoned chalice.
@Grannie G I have half opted out and wish I could just get away for the whole of December and first week of January but I can’t so I shall just have to push on through.
@jenniferjean perhaps we could scream silently together!
 
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Duggies-girl

Registered User
Sep 6, 2017
1,813
@Grahamstown it's awful I know. It is so frustrating and I feel that I have become disabled myself.

My son fell asleep on the train last night and ended up in a town 60 miles away at midnight. I know he's a big boy but I worry about him. He phoned me and said he could get a last train that would get him halfway home but then he would be stuck. I couldn't help him, I wanted to jump in the car and go and get him, it's only 30 miles and the roads would be empty, it wouldn't take long but I can't leave dad at that time of night.

My husband couldn't go because he had been to the pub. I think that was the first time I felt resentful towards dad and it wasn't his fault. It didn't help that dad has suspicions that my son uses his car and started on about that, he doesn't, he uses ours but he was on the flipping train not in a car. I felt like I was disabled too, I suppose I am trapped by dementia as well.

Turned out okay, my son rang a friend who lives that way who picked him up and took him back to his place so at least he didn't have to spend the night at the train station on his own.

I am just cross really because I could have had him home in an hour. I just don't feel like me anymore and I don't like it. I wanted to scream and stamp my feet and now I just want to cry.

I don't know.
 

Fishgirl

Registered User
Sep 9, 2019
134
@Grahamstown it's awful I know. It is so frustrating and I feel that I have become disabled myself.

My son fell asleep on the train last night and ended up in a town 60 miles away at midnight. I know he's a big boy but I worry about him. He phoned me and said he could get a last train that would get him halfway home but then he would be stuck. I couldn't help him, I wanted to jump in the car and go and get him, it's only 30 miles and the roads would be empty, it wouldn't take long but I can't leave dad at that time of night.

My husband couldn't go because he had been to the pub. I think that was the first time I felt resentful towards dad and it wasn't his fault. It didn't help that dad has suspicions that my son uses his car and started on about that, he doesn't, he uses ours but he was on the flipping train not in a car. I felt like I was disabled too, I suppose I am trapped by dementia as well.

Turned out okay, my son rang a friend who lives that way who picked him up and took him back to his place so at least he didn't have to spend the night at the train station on his own.

I am just cross really because I could have had him home in an hour. I just don't feel like me anymore and I don't like it. I wanted to scream and stamp my feet and now I just want to cry.

I don't know.
Gosh that must have so frightening for you, worrying about him out there on his own at that time!:eek: It’s so difficult not to feel resentful in situations like that. I hate having to say I can’t help people out now, we just have to hope that they understand but I’m not sure they really do sometimes and it makes you feel so guilty, but I’m glad he made it home ok:) xx