• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Not been on here for weeks... thought I was doing OK ...but...

maryjoan

Registered User
Mar 25, 2017
1,412
South of the Border
When you feel you are coping, or you have your head in the right place.. then covid19 comes along....

I really have been OK, but now when I wake up the first thought in my head is my daughter and her broken marriage and two small children, followed by the hugeness of Covid19, then reality hits like a wall - 'What will he get up to today?'

I have got used to no empathy, no feelings whatsoever, the total selfishness of him now he is tightly wound up in this dementia bubble.
I have told you about all the stuff he has bought online and the trials of sending it all back, apart from the piano he decided to keep.....
But not about him going for a walk in the remote lanes around here and getting lost
and him going out and simply not being here when the carers come -
I cannot get him a tracker because he doesn't have a smart phone, but leaves his phone home anyway.
I am not his wife and cannot physically stop him going out - he is six foot two for heaven's sake, to my five foot.

Today I had to cancel a telephone consultation with the Dr he had made, as he wanted to talk about 'getting a new colon' - we have done this so many times but he doesn't remember
Today I have had to explain to him that he shouldn't be stopping the bus driver and talking to him about going to town to go to the shops that are shut.
Today I have had to tell him that the big recycling bins do not live in the house where he had brought them, but in the garage.
Today I am struggling in our rented home, because in this hot weather we have not had a working shower for two weeks, even though the agents keep telling me it is 'in hand'
Today I advised my daughter to ring the police if her estranged husband gets violent.

On the brink of Coronavirus, his family and I had arranged a move for him - but now it is not happening................ I can only talk to you guys, and I do not want to bother his family as being 250 miles away, they can do nothing and have their own difficulties....

thanks for being there, take care and stay safe.....
 

nae sporran

Volunteer Host
Oct 29, 2014
6,930
Bristol
I was just running through my positives diary and C's dementia diary. The ups and downs of life as a carer are made so much harder with Covid, so you have empathy here anyway @maryjoan. Stay safe and stay sane.
 

ashtreex

Registered User
Dec 16, 2018
21
London
Oh Maryjoan, I so feel for you, when everything was arranged. Could you get a really small tracker, key ring size, and stitch into a jacket? Stay strong, this will eventually end.
 

Splashing About

Registered User
Oct 20, 2019
433
So sorry life is so difficult for you. Do what you can to make life bearable. Make a list of what is unbearable and what makes life bearable and try and really be brutal about making sure you get some of the bearable and pause the unbearable.
 

White Rose

Registered User
Nov 4, 2018
627
Hi @maryjoan , it sounds like you are having a particularly bad time. My partner's wandering off stopped a long time a go, but I remember once having to get my bike out and go looking for him and another time his carer arrived to find he was out (I was at work) and she and her dad went looking for him, luckily I knew the places he would normally go to. He does sometimes try to go out but we have a little plastic gizzmo at the top of the front door which he doesn't know about and stops him going out.
Someone suggested I contact the GP as his anger and anxiety have been getting out of hand, glad I did as they've changed his meds - hopefully for the better.
Your letting agents don't sound very efficient, we're also in a rented house at the moment and when anything goes wrong they are on the case - but perhaps you need to keep badgering them, not acceptable to leave you without a shower.
Don't know if would help you with all the other stuff in your head but I've recently heard of a book called The Artist's Way by Julia Cameron (I've just ordered a copy) and have been following her advice to write 3 pages of whatever comes into your head as soon as you wake up. It's supposed to be therapeutic. I can only do it if himself doesn't wake up at the same times as me but it seems a good way to 'spill your guts' - as well as writing on here of course!
Hope you have a better day today.
 

Fullticket

Registered User
Apr 19, 2016
479
Chard, Somerset
Hi Maryjoan. I don't post very often now as my mum died a couple of years ago. I totally empathise which what you are going through - in our house the outgoing Christmas cards were 'posted' in the bottom of the AGA, pink flannels only in her bathroom otherwise she thought she was in a hotel and would go into her bedroom and pack a bag and she could not pass a field (we live in the country!) without a long saga about American soldiers in the war. It goes on and I learned that for me black humour was the partial answer.
One thing I did pick up on. What makes you think you should not 'bother' his family? Firstly you clearly need some support, and they are his family. Secondly, if something happens suddenly, please don't leave yourself in the position of his family perhaps accusing you of not keeping them in the loop. Rock and a hard place, I know.
Hope it improves.
 

maryjoan

Registered User
Mar 25, 2017
1,412
South of the Border
A week later and I am back!
Hit a real low yesterday.
I will not bore you with the details but it involves rapidly advancing dementia and a stoma bag.

I rang the specialist stoma nurse for suggestions, and his main thought was that I had reached the end of my tether at least a year ago, and why was I attempting to care in such a complex situation ( there are other medical issues)
He agreed to come out here today.
I spoke with the social worker - told her I was desperate for sleep and needed to get my head around things, and I did not care how she did it - but I needed himself out of here as I was sick of trying to do this on my own.
I phoned his son who is 200 miles away, and he agreed that I was at breaking point.
end result.....
well nothing really.
He cannot go anywhere because of Covid, even 2 weeks as he would be put into isolation for the whole time.
Blah blah blah
I can't move out because I will never get a tenancy somewhere on my state pension

Sleepless night

This morning I woke from a doze convinced one of us would have to die to resolve the situation.

Stoma nurse turned up with some good ideas. We have adjusted meds, and invested in certain practicalities that should help. He is going to write to the Dr to say the situation is untenable.

In the meanswhile, onward I plod with an old chap who does not act/look/ seem to be, the lovely man I fell in love with only 9 short years ago.........
 

jennifer1967

Registered User
Mar 15, 2020
283
A week later and I am back!
Hit a real low yesterday.
I will not bore you with the details but it involves rapidly advancing dementia and a stoma bag.

I rang the specialist stoma nurse for suggestions, and his main thought was that I had reached the end of my tether at least a year ago, and why was I attempting to care in such a complex situation ( there are other medical issues)
He agreed to come out here today.
I spoke with the social worker - told her I was desperate for sleep and needed to get my head around things, and I did not care how she did it - but I needed himself out of here as I was sick of trying to do this on my own.
I phoned his son who is 200 miles away, and he agreed that I was at breaking point.
end result.....
well nothing really.
He cannot go anywhere because of Covid, even 2 weeks as he would be put into isolation for the whole time.
Blah blah blah
I can't move out because I will never get a tenancy somewhere on my state pension

Sleepless night

This morning I woke from a doze convinced one of us would have to die to resolve the situation.

Stoma nurse turned up with some good ideas. We have adjusted meds, and invested in certain practicalities that should help. He is going to write to the Dr to say the situation is untenable.

In the meanswhile, onward I plod with an old chap who does not act/look/ seem to be, the lovely man I fell in love with only 9 short years ago.........
dementia is hard im seeing a difference with my husband and i know it will get worse but ive had him 32yrs. sorry you havent had long with him. has the nurse and meds meant an improvement?
 

miltonlew

New member
Mar 9, 2020
1
64
rustington
When you feel you are coping, or you have your head in the right place.. then covid19 comes along....

I really have been OK, but now when I wake up the first thought in my head is my daughter and her broken marriage and two small children, followed by the hugeness of Covid19, then reality hits like a wall - 'What will he get up to today?'

I have got used to no empathy, no feelings whatsoever, the total selfishness of him now he is tightly wound up in this dementia bubble.
I have told you about all the stuff he has bought online and the trials of sending it all back, apart from the piano he decided to keep.....
But not about him going for a walk in the remote lanes around here and getting lost
and him going out and simply not being here when the carers come -
I cannot get him a tracker because he doesn't have a smart phone, but leaves his phone home anyway.
I am not his wife and cannot physically stop him going out - he is six foot two for heaven's sake, to my five foot.

Today I had to cancel a telephone consultation with the Dr he had made, as he wanted to talk about 'getting a new colon' - we have done this so many times but he doesn't remember
Today I have had to explain to him that he shouldn't be stopping the bus driver and talking to him about going to town to go to the shops that are shut.
Today I have had to tell him that the big recycling bins do not live in the house where he had brought them, but in the garage.
Today I am struggling in our rented home, because in this hot weather we have not had a working shower for two weeks, even though the agents keep telling me it is 'in hand'
Today I advised my daughter to ring the police if her estranged husband gets violent.

On the brink of Coronavirus, his family and I had arranged a move for him - but now it is not happening................ I can only talk to you guys, and I do not want to bother his family as being 250 miles away, they can do nothing and have their own difficulties....

thanks for being there, take care and stay safe.....
keep stong@maryjoan,a lot of us feel the same,but get strength knowing that being a collective would think of all in our prayers
 

AliceA

Registered User
May 27, 2016
2,825
Oh, Maryjoan. I am so sorry to hear this, lack of sleep is a real killer. I know how it is to be running on empty.
My words are not enough I wish I could give you a hug and a hand.
Have you rung social services helpdesk. Sometimes we have to sound like a broken record, but you need help. X
 

Just me

Registered User
Nov 17, 2013
237
He cannot go anywhere because of Covid, even 2 weeks as he would be put into isolation for the whole time.
Blah blah blah
I can’t remember the last time I had an uninterrupted sleep and am at the end of my tether which isn’t helping either of us.
I rang a care home last week that had vacancies and are accepting new people but anyone new will be placed in 2 weeks isolation. It’s a tough decision to make at the best of times but Covid is making it impossible.
Having said that mum would refuse to go so I don’t see any solution 🙁
 

TNJJ

Registered User
May 7, 2019
1,531
cornwall
I can’t remember the last time I had an uninterrupted sleep and am at the end of my tether which isn’t helping either of us.
I rang a care home last week that had vacancies and are accepting new people but anyone new will be placed in 2 weeks isolation. It’s a tough decision to make at the best of times but Covid is making it impossible.
Having said that mum would refuse to go so I don’t see any solution 🙁
Dad went into respite for a few weeks before Xmas. He refused but I told him straight that I was going regardless so he would have the carers come in anyway. He went. I wanted him to stay but they(the home)deemed him to have “fluctuating capacity “. If they saw him now they wouldn’t say that.
You have to be sneaky sometimes.
He started with day care. Any chance of that?
 

Lynmax

Registered User
Nov 1, 2016
465
In April my mum was discharged from hospital into a care home and she had to have a negative Covid 19 test and then spend two weeks in isolation in her room. However, they were unable to enforce this as mum would just walk out of her room - she could not be locked in! The staff did the best they could to minimise her contact with other residents and luckily many residents are less mobile so are in their rooms at the moment. Mum ended up with a lot more "freedom" than I expected.

So your partner might have a similar experience in the right home - all the residents have AZ to some degree, some fairly mildly, others more affected.
 

Just me

Registered User
Nov 17, 2013
237
Dad went into respite for a few weeks before Xmas. He refused but I told him straight that I was going regardless so he would have the carers come in anyway. He went. I wanted him to stay but they(the home)deemed him to have “fluctuating capacity “. If they saw him now they wouldn’t say that.
You have to be sneaky sometimes.
He started with day care. Any chance of that?
Mum was attending day care before lockdown and though it was a struggle to get her there at times, she enjoyed it when she went. She’s deteriorated a lot since a March and I’m not sure that day care, when it resumes, would be suitable for her any more

I was already thinking the time had come for her to move to a home for both our sakes and was in the process of looking for one then COVID came.

Its a hard decision at the best of times and the thought of her going into a home now when I’ve not been able to visit the place or see the staff, that she would be in a room on her own for 14 days and then have no visits, makes it impossible for me to do.

Under normal circumstances I’m sure I’ve reached the stage where I could have persuaded her to try respite.