How DO we get through LOCKDOWN3?

[maryjoan]

I am trying to keep us both safe here at home. He is 74 and I am 72. He has health issues as well as dementia but does not need shielding.

He does not understand any of the Governments rules now we are under lockdown again, as he thinks the whole coronavirus issue is called a lockdown.

When I say that he cannot do something, or he ought to wash his hands etc he is now calling me a 'Nagging old sod' something he would never have done when he was well.

So this morning he is sulking at me.

I have no support whatsoever with him from his family ( we are not married) and there is no respite now with lockdown.

How will I get through these next weeks???

We have a carer for 1 hour a day who deals with his stoma care and tries to get him to shower. We don't have a car so I cannot go for a drive, and I cannot walk far because of arthritis.

 

[Grannie G]

Hello @maryjoan

If your partner isn`t going out and has a carer for his stoma he is unlikely to be affected by the coronavirus so do you need to ask him or tell him to do anything?

I would have as little interaction as possible which might cause him to kick off against you. It is not a good way to live I know but it at least might give you a more peaceful living environment.

It must be dreadful to be living the way you are and I just hope you are strong enough to get through it.

 

[marionq]

I have great sympathy with you as I know how much more difficult life would be if my husband were still alive and needing looked after.

Bringing your partners situation to the notice of all concerned will only happen when he becomes an insuperable problem to them. As long as you take up the role of problem solver no solution will be found.

In the seven years looking after my husband with Alzheimer’s I got lots of support but no workable solution and he was with me until he died at the end of 2019. By contrast when his sister went off the scale at the start of the first lockdown I stepped in to assist the authorities to find a solution BUT REFUSED TO BE THAT SOLUTION MYSELF.

Within two weeks of police, doctors and an ambulance being called a place in a very good care home was found and she is very happy there and has shown no sign of wanting to leave.

I think you need to let him go where he wants and do what he wants leaving social services and police to step in. A solution will be found by them once they see you are no longer the fall back position.

 

[margherita]

Hi @maryjoan ,
The only way to survive when we are trapped and there's no way out is "disengaging ".
If we can't disengage physically , we should try to do it emotionally .
My husband lives in his world , I in mine.
I am trying to give up talking, explaining, complaining and obviously arguing. When he asks me a question , my answer is "Sorry, I don't know ", since I know he won't understand what I tell him.
I have to bite my tongue, but I realize that's the only way left if I want to preserve my sanity.

By the way, we have a car, but he NEVER lets me go out on my own

 

[jennifer1967]

oh maryjoan its going to be difficult. id leave him to it and not wash hands as he doesnt go out. my husband will be shielding as he has copd. at least you have a carer for an hour, i know its not long but gives you a breather. get through it as best you can and dont worry about the little of things. its better not to antagonise him and get important things done. i cant go out either through pain so its going to feel a long time

 

[margherita]

"As little interaction as possible"
I'll take your advice. @Grannie G

 

[canary]

It sounds like you have slid back into caring for him again.
As Syvia says - I would do as little as possible for him and not keep telling him what to do.

 

[Grannie G]

I`ve been thinking. Those of us who are and have been carers have our own version of lockdown even without COVID.

I was alone with my husband for 21 hours a day even with an excellent care package.

I couldn`t leave him alone safely, not could I stop him going out and being at risk to himself and other.

Even though there was love in the realationship very often is was one sided love on my part only. Half the time my husband either didn`t know who I was or was accusing me of controling his life or taking away his independence.

Sadly it had to take progression of the dementia and life in residential care before he smiled when I went to visit him and accepted my presence with pleasure

Throwing COVID in the net just makes life 100% more challenging.

 

[maryjoan]

You are all absolutely correct - I have tried so hard to stand back and just let things happen - but it is so against my nature when I see his meds not being taken, or taken at the wrong time etc. Having to share the bathroom with him is a complete nightmare and riles me. But you are totally correct. He went out on his bike just about an hour ago, don't know where he is - don't care either.... that's the right way to be I think.
I am heading towards the end of all this I am sure.... let it all happen - that has to be my mantra now, why should I keep putting myself through this???

Thank you everyone

 

[Lawson58]

You are all absolutely correct - I have tried so hard to stand back and just let things happen - but it is so against my nature when I see his meds not being taken, or taken at the wrong time etc. Having to share the bathroom with him is a complete nightmare and riles me. But you are totally correct. He went out on his bike just about an hour ago, don't know where he is - don't care either.... that's the right way to be I think.
I am heading towards the end of all this I am sure.... let it all happen - that has to be my mantra now, why should I keep putting myself through this???

Thank you everyone

There are times in our lives when situations leave us very few choices in what we do. And for you, this is one of those times.

We have just been through one of longest lockdowns ever and though it has been claustrophobic, my husband has understood the implications of the virus for him with his heart condition. But just having him home all the time for months on end has been stressful enough without the problems you have to deal with.

I don't see how you can really stop him from going out and if he refuses to cooperate with hand hygiene, then that is something you cannot control.

If it were me, I think I would step back too. Just make sure that if he is going out, that you keep yourself safe.

 

[Littlebear]

This lockdown is so much worse than before. My husband wants to be outside all the time - normally we go out for numerous short walks - up to six times a day but of course we can’t do that now & he just doesn’t understand why. Last time at least we could sit outside but it’s far too cold for that now. Walking is a way of keeping him calm. I delayed our walk until midday & he has spent the whole day raging & hitting out. There is nothing else that distracts him - he can’t read, speak, follow TV programs or do anything really. How are we going to get through this? I can’t physically disengage as he follows me everywhere & it’s hard to mentally disengage from someone who is raging all the time. If I stand back he wouldn’t eat or drink. I’m just praying that he will adjust.

 

[Shedrech]

Hi @Littlebear
I can't help thinking that your husband's need has to be taken into account

I assume you 2 will walk together and have no interaction with anyone else ... so your risk of catching or passing on any virus is extremely low

Personally if dad were alive I would have continued his walks as they would be necessary for his health and welfare and my welfare and safety

Just my opinion

The Guidance is:

Leaving home
You must not leave, or be outside of your home except where necessary. You may leave the home to:
......
seek medical assistance or avoid injury, illness or risk of harm (including domestic abuse)
.....
If you are clinically extremely vulnerable you should only go out for medical appointments, exercise or if it is essential.


I would suggest that the phrases 'where necessary' 'risk of harm' 'if it is essential' give you some leaway to make an informed decision in your specific circumstances

 

[Littlebear]

It may well come to that but part of me feels it’s our social responsibility to abide by the rules and as hard as I try my husband has no comprehension of social distancing. The transmission rate of this new strain is scary & I’m not sure he would survive it.

 

[Shedrech]

I understand @Littlebear
but this in your post concerns me:
"he has spent the whole day raging & hitting out."
what happens if you are injured

 

[Littlebear]

I’ve lived with his rages & violence for 6 years now & I’m aware of the risk. He did go into a nursing home in September to give me a break but I hated being apart from him & so chose to bring him home. I did discuss my decision at length with his mental health worker & I appreciate it is a calculated risk. I do take every precaution I can against being injured but normally I’m more concerned that he will injure himself. I know the time will come, probably sooner rather than later, when I can no longer manage but whilst I can I will.

 

[Bunpoots]

Just my opinion too @Littlebear but I would just go out for a walk as many times as necessary and try to keep away from others. Would he wear a mask, or a scarf around his face " to keep him warm".

 

[Littlebear]

He’ll happily wear a mask. If he doesn’t adjust in the next day or two then I will do that. It is hard for PWD to make sense of it all. Hard enough for us!!

 

[Dimpsy]

@maryjoan, these are distressing days for us carer's.
I deal / have to sort out mum's incontinence, Alzheimer's, as well as OH who has a stoma and very distressing mental ups and downs from a prolonged hospital stay in 2020; ICU psychosis.

Some day's (most day's / every day) it breaks my heart how I live now.
I love them both and they have so much care from the NHS and independent organisations, which is brilliant.
But I'm a nobody.

 

[maryjoan]

@maryjoan, these are distressing days for us carer's.
I deal / have to sort out mum's incontinence, Alzheimer's, as well as OH who has a stoma and very distressing mental ups and downs from a prolonged hospital stay in 2020; ICU psychosis.

Some day's (most day's / every day) it breaks my heart how I live now.
I love them both and they have so much care from the NHS and independent organisations, which is brilliant.
But I'm a nobody.

This is the 5th time I have been a carer - and yes, we lose ourselves in this role - and noone should have to lose themselves....

 

[Dimpsy]

This is the 5th time I have been a carer - and yes, we lose ourselves in this role - and noone should have to lose themselves....

Dear@maryjoan, you are an inspiration times five; I'm ashamed of my self-pitying moan and determined to be the glass half full person I used to be.
2020 was such a damaging year for me and mine and I've probably become inured to expecting the worst.
I'm going to replace negativety with positivety and accept, with grace, how we live now..
Incontinence and a colostomy may be major player's in our house, that's inconsequential to the grief other families have xx