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Another day.......

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
I find it a mental struggle to let go of him, one day I think I am done and then I think its ok I can keep going. When he is not having big toilet problems I think I can go on. It is really the problems when he gets a bug and is unwell, then I am overwhelmed and unable to handle the battles over the diaper/pants and the messes. But then he gets better and I think well at least he has me, and he has our home even though he does not seem to get any real pleasure from anything any more. Even the walking is just part of the routine....no longer the joy of nature. But I know it does him good.
 

None the Wiser

Registered User
Feb 3, 2020
114
I really know what you mean @PalSal. I don’t think my husband is quite as far down the road as yours but a week or so ago when he was non-stop hallucinating I really thought that I wouldn’t be able to cope much longer. The hallucinations aren’t quite so bad now, and he’s been more passive. It’s still hard work but over the last week I’ve felt the same as you I.e. better to keep on coping as he knows me ( though not that I’m his wife), he knows the house (though doesn’t realise it’s his home of 35yrs. The problem is that it keeps changing and you never quite know what you’re going to be facing, or worse - it’s the same as the day before and you can’t cope with that either!
 

Vitesse

Registered User
Oct 26, 2016
219
I really know what you mean @PalSal. I don’t think my husband is quite as far down the road as yours but a week or so ago when he was non-stop hallucinating I really thought that I wouldn’t be able to cope much longer. The hallucinations aren’t quite so bad now, and he’s been more passive. It’s still hard work but over the last week I’ve felt the same as you I.e. better to keep on coping as he knows me ( though not that I’m his wife), he knows the house (though doesn’t realise it’s his home of 35yrs. The problem is that it keeps changing and you never quite know what you’re going to be facing, or worse - it’s the same as the day before and you can’t cope with that either!
I feel just the same. The last two years have been horrid, but it was going on in the background before that. His memory was bad, he was struggling with vocabulary, but i thought I’d be able to cope. I am trying my utmost to keep him at home, but last week we were up every night by 3.30 am, with him wanting to have his shower! one night it was 1.45am and he was getting dressed. I tried to explain the time, but he got very cross and it went downhill from there. At 2am I was ready to find a care home! But by the morning I became more rational and we just survive as we are. No day is good, but some are better than others!
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
@Vitesse and None the Wiser
Thanks for writing.
Yes, we carers all must struggle along with the new set of issues almost daily.
I have not been walking this week, it is so hot. And I am lacking motivation and am rather down in the dumps (probably due to the lack of exercise and the isolation)
We briefly saw our daughter Tuesday afternoon, and she invited us for dinner last night but as I now have this private Spitex coming in to bathe Nick at 7pm it is not possible to accept dinner invites from her. I had called her yesterday and tried to negotiate an invitation in the daytime to go swimming with them, but she did not get the hint. Then she asked us for dinner forgetting that is not in the cards now. So, I was very sad. I am overly dependent on seeing our daughter and her little family, and get resentful and compare the time the family gives to my son in laws mother. His mother is much more included. (My son in law does not like to be around the Nick issues anymore I think.....its too much work)
This new routine of help in the evening is good, but confining.
Nick who normally sleeps OK is not sleeping that well, probably the heat and it so frightened all the time and anxious. He was up at 4:30 this morning. I managed to help him with the toilet and get him back to sleep. But I never really got much sleep again and got up at 5:45. It would have been a good time to walk as it was cool, but I would have had to wake him.
 

CarolandVic

Registered User
May 1, 2020
12
I often dream of escape in a motor home! I’d love to get one. Perhaps one day we’ll all meet up!
That is my dream for the future. Because I know the future is me, on my own. Our life was travelling. We even lived in Greece for 12 years. Last year I drove us to see our son in Portugal. For the first time on a European trip only I could drive but airports had become impossible. I'm glad we did that because this year, even without Covid, it would have been too difficult. My OH can't manage a scooter any more. His balance and coordination have deteriorated so I have to change it for a wheel chair. Vascular means that his memory is still fine which makes it even more heartbreaking for him and for me. The Cheshire countryside is beautiful but we now only see it through the window.
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Yes, indeed. It is a strange old world.
We just got back from our daily hike. I always feel so much better for having taken Nick (and myself) out into nature for some strenuous exercise.
We made it without getting wet, too. That's a bonus. Now we are getting more much needed rainfall. And it is cool and delightful.
I am so aware of how so many people do this carer thing so well. I am impressed and amazed with the patience and love I read about here on Talking Point.
I do the best I can.....but I often find I am restless, irritable and discontent. Shouting or completely ignoring him so that I can complete some task or duty.
My goal is to make it thru an entire day without having to apologize to Nick for some loss of patience, some cross or horrible exchange, some lack of love .
I really do recognize that I do well much of the time, but as I have said before there is not a lot of love and kindness (on average 2 hours a day of true kindness and love)... certainly no laughter. It is about vows, duty, honor and principles. I need to go back to the practice of just giving him an big hug (I do this for long periods, then forget to do it) When I remember to give him hugs, it helps to remind me that he is in there somewhere, and this is life he leads is no picnic for him either.
 

jennifer1967

Registered User
Mar 15, 2020
944
Southampton
i had my mri scan for my back yesterday and look after my husband. hes not so far a long as most but i get irritated when he tells me what i need to do . im struggling now but he can self care now we have the bathstool in the shower and it helps me too .im just try and maintain the cleaning and washing but my son and daughter have had to take over the gardens im 19 yrs younger than my husband but were ok we had so much prejudice that we have built a solid wall against those that think they are entitled to judge other people
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
@margherita
Yes, one perfect day in all these years of care would be quite nice. I would like to look back and think yes I did it perfectly just one day. Saint Sally......just for one full day. But most of the time I subscribe to Hugh Marriott ( of the Selfish Pig's Guide to Caring ) , and have modeled my care giving on keeping my own personal life going as long as possible. I think it has worked out alright ....I know I have done the best I could and will continue to do so as we go forward with the next stage.
 

vannesser

Registered User
Apr 4, 2016
358
That is my dream for the future. Because I know the future is me, on my own. Our life was travelling. We even lived in Greece for 12 years. Last year I drove us to see our son in Portugal. For the first time on a European trip only I could drive but airports had become impossible. I'm glad we did that because this year, even without Covid, it would have been too difficult. My OH can't manage a scooter any more. His balance and coordination have deteriorated so I have to change it for a wheel chair. Vascular means that his memory is still fine which makes it even more heartbreaking for him and for me. The Cheshire countryside is beautiful but we now only see it through the window.
My ho has vascala for 4 year over past 2 year his mobility bad that as this year he was took in hospital told he had chest infecshion but told 2 days after going in thay was discharging him i asked if he been out of bed as when he left home he caudent stand up ,told 2 hours after he needed hospital bed and cares 4 timmes a day ,8 cares ,he still as not beenable to stand hosted out of bed to chair most days for 4 hours then back to bed ,i am 16 year unger then him 61 /77.
I have never been away with out him but i keep thinking ,whate is life going to be for us all.not been on holiday for past 2 year ,he keeps telling cares we been on holiday this last month for a day i wish that was true.
Hope you get your dream travling ,with him
We can always dream but how long for ,
 

margherita

Registered User
May 30, 2017
2,568
Italy, Milan and Acqui Terme
@margherita
Yes, one perfect day in all these years of care would be quite nice. I would like to look back and think yes I did it perfectly just one day. Saint Sally......just for one full day.
I can only speak for myself...
The more I try to be perfect, the less I succeed, in every field of my life , even re the most trivial things, such as going on a diet or keeping my drawers in order.
If I don't meet my unrealistic expectations, I feel frustrated and dissatisfied.
I wish you a good day and a nice hike in the mountains.
Here, too, temperatures have plummeted after tonight's rainfalls. But it won't last, I'm afraid. A long, hot and exhausting summer is still ahead of us.
A big ((((((hug)))))) to a marvellous woman ( you!)
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
@margherita

Don*t worry I am saying this "tongue in cheek" I realize perfection is not realistic.
We had a good day today.....2.5 hours this morning and I went off to meet a friend this afternoon and Nick's carer Bini came and walked him again for 3 hours. He should be exhausted, and I hope he sleeps well tonight.

Now I must get some dinner for him, and then at 7 pm the private nurses come to bath him and get him ready for bed.

I am finding that I can handle life again as I know Nick is on the this waiting list. I do not know if it is a week, two weeks, six months or a year. But at the moment, it is enough knowing he is on the waiting list.
I wrote his two children in Norway, both were sad but very understanding. And then on Monday, I wrote his siblings and my sister in law who has always been loving and supportive to us both. (heard from 3 out of 5 of the siblings)
Everyone completely understands. I did not write his mother and leaving it to his siblings in the UK to discuss it with her. I do not want her to be distressed.

Today was a good day. That is enough for me. Now I just need to get through the evening hours when he is often anxious and fearful with no way to express why. Just another day.............



 

CarolandVic

Registered User
May 1, 2020
12
My ho has vascala for 4 year over past 2 year his mobility bad that as this year he was took in hospital told he had chest infecshion but told 2 days after going in thay was discharging him i asked if he been out of bed as when he left home he caudent stand up ,told 2 hours after he needed hospital bed and cares 4 timmes a day ,8 cares ,he still as not beenable to stand hosted out of bed to chair most days for 4 hours then back to bed ,i am 16 year unger then him 61 /77.
I have never been away with out him but i keep thinking ,whate is life going to be for us all.not been on holiday for past 2 year ,he keeps telling cares we been on holiday this last month for a day i wish that was true.
Hope you get your dream travling ,with him
We can always dream but how long for ,
My husband's mobility has declined over the last few days. He can't stand up to use his rollator so I'm now pushing him to the loo and bed in a small wheelchair. He was diagnosed four years ago and I thought how well we were coping but this sudden decline makes me think he will soon be bedridden. His vision is also getting worse. I dread to think what the next few months are going to mean for him, and for me.
 

vannesser

Registered User
Apr 4, 2016
358
My husband's mobility has declined over the last few days. He can't stand up to use his rollator so I'm now pushing him to the loo and bed in a small wheelchair. He was diagnosed four years ago and I thought how well we were coping but this sudden decline makes me think he will soon be bedridden. His vision is also getting worse. I dread to think what the next few months are going to mean for him, and for me.
It’s hard husband just been told he will never stand again he asked a bought walking .he don’t understand .
He keeps saying we been out and he walked to shop .he cry’s a little as if he understands then goes on abought walking .
There having refunded returns and for rest of time he will be hosted out of bed to chair it’s not a life a dog wouldn’t have to suffer like this .
I love him but what next
 

jennifer1967

Registered User
Mar 15, 2020
944
Southampton
It’s hard husband just been told he will never stand again he asked a bought walking .he don’t understand .
He keeps saying we been out and he walked to shop .he cry’s a little as if he understands then goes on abought walking .
There having refunded returns and for rest of time he will be hosted out of bed to chair it’s not a life a dog wouldn’t have to suffer like this .
I love him but what next
im so sorry need to treasure all the time you have together i hope you are getting help. its not fair but dementia is not fair
 

Thethirdmrsc

Registered User
Apr 4, 2018
221
This is about out 6th week with carers in. This morning after he was up, I said the “helper” was here. He said “tell them to P off”. Course I didn’t, learning!
 

PalSal

Registered User
Dec 4, 2011
913
Pratteln Switzerland
Yes I had a 36 hour break thanks to my youngest son and one of the carers. I went overnight to the mountains and took two circular hikes of about 4 hours each. It was wonderful to not feel any responsibility or be wondering where NIck is in the house etc etc etc. Overseeing the the endless trips to the toilet.
I felt so good. But within two or three hours of being home I was back to my old bad ways. Impatient and irritable. It is clearly time to end this caring role when even a break does not fill the vessel enough to sustain the job at hand. I need a week....not a day.
But anyway that is how it is. Mornings are good, afternoons ok, evenings are fairly intolerable.
 

vannesser

Registered User
Apr 4, 2016
358
Yes I had a 36 hour break thanks to my youngest son and one of the carers. I went overnight to the mountains and took two circular hikes of about 4 hours each. It was wonderful to not feel any responsibility or be wondering where NIck is in the house etc etc etc. Overseeing the the endless trips to the toilet.
I felt so good. But within two or three hours of being home I was back to my old bad ways. Impatient and irritable. It is clearly time to end this caring role when even a break does not fill the vessel enough to sustain the job at hand. I need a week....not a day.
But anyway that is how it is. Mornings are good, afternoons ok, evenings are fairly intolerable.
It is hard my ho as vascala 4/and half year been a bad year as he was in hospital this year and came home needing hospital bed 8 cares a day 4 times a day .been told he can not walk or stand so in bed hosted to chair that’s life here .if I go out is site for more than 40 min he gets really mad .i glad you had a good time while out .i just no that as soon as I back it’s like a wars own where he as had a go at our daughter and she Can not Handel his hard words .people tell her to just leave him but she knows he will try and get out of bed and Hurt himself .
I hope you get another brake soon .