My anger

[PalSal]

The weeks of confinement are going fairly well. Taking Nick on all his walks has gotten me fitter but I am tired. I have little energy for anything else. I just walk Nick and do the cooking Luckily, no one is coming to the house so it does not matter if it is clean. We have been isolating since March 4th.
I use so much energy to walk with him, 2 to 5 hours most days also takes away some of my anger. But I am still irritable with him at times, which makes me sad and full of guilt.
But overall I am still not very kind.
I hardly recognize this person, as the man I married. I am deeply angry with him that he chose to bury his head in the sand about the consequences of his inability to look at the disease and what would ultimately happen to him. And that I and the children would be responsible for his every need and action. He will no longer even go outside without me, to sit in a lounge chair in the sun, or at the table after his lunch. It is like open spaces are somehow threatening.
His is not having a life he would have wanted .....but what can you do . Inaction and fear brought him here .....but it is I who must dance to the tune of his inability to face what was his future. And I am angry.

 

[Grannie G]

I`m sure many will identify with you @PalSal. Isolation is an unnatural way to live and we are all feeling the effects.

 

[canary]

I am so sorry @PalSal - I can identify with much that you write about. Its a difficult life, made so much harder by this wretched virus.

I am wondering whether he needs to walk so much as he is becoming unwilling to leave the house and whether this might be less tiring for you.

 

[Lyd]

Its ok to be human. Being angry is so hard. Being human is pretty hard to sometimes! I know you have no energy but noted that your title "my anger" so wanted to speak to that.
I dont know if you have otherways you sucessfully manage your anger and if its worth having a list of things you could do as well as walk? google CBT techniques perhaps, our thoughts affect our feelings and our behaviour. its not magic but it helps.
As a species we are pretty short sighted and ignore future risks concentrate on the present and hope fo the best (i am fat but i do nothing about it, we drive cars and we know about climate change, i also thought i knew what caring for someone with dementia would be like, i assumed that i wouldnt be left holding the baton while everyone else said their goodbyes and slinked off... even though friends warned me).
Anyhow feel free to ignore all this if it doesnt help.
From one person who gets angry and irritable and guilty to annother.

 

[Starbright]

I’ve read many of your posts @PalSal and I have marvelled at you’re energy and fortitude while caring for your husband. Your feelings are totally understandable
I too feel angry and I know I’m not very kind to my husband at times, but the lack of empathy and selfishness and verbal abuse etc etc that this disease brings tests the strength so much ... and we all know it’s not really him or her “It’s The Dementia” but it hurts and it’s so hard to take .
As @canary says maybe it’s time to cut back a little on the walks, give yourself some rest and be gentle with yourself.
(((hugs))) A x

 

[PalSal]

I am so sorry @PalSal - I can identify with much that you write about. Its a difficult life, made so much harder by this wretched virus.

I am wondering whether he needs to walk so much as he is becoming unwilling to leave the house and whether this might be less tiring for you.

Canary he is not ujnwilling to leave the house with me for a walk, If I do not walk him 2 to 5 hours he pacing inside the house. Walkig up and down the downstairs displaying lots of anxiety behaviors. Walking is the release. If I do not walk him I have to sedate him, which makes my life harder...bathroom problems understanding simple instructions etc. Waling is a good thing...and not the issue. It is the over all fact that he requires constance care and attention.

 

[White Rose]

It is the over all fact that he requires constance care and attention.

My feelings at the moment too - sadly my partner can't walk very far now, a 15/20 minute walk is usually enough but like your husband @PalSal he paces around at home, he has lost the ability to do anything himself or think for himself so is always waiting for me to find something for him to do and also expects my attention all the time (then he'll regularly come out with 'nobody cares for me'!!). It's relentless, it's stressful, it's enough to make you want to scream at times. They have become children again, helpless, scared and reliant on the 'adult'. How have you managed to be Nick's carer for all these years? It's no wonder you're tired. I think I have to give up after the coronavirus and think about a care home because of his anger as well and starting to be issues with incontinence. If only we knew how long then we could plan, but we don't and your Nick is still quite young. It's no wonder you're angry, so many years spent caring for him and however many more. You seem like an amazing person and a devoted wife that's all I can say.

 

[PalSal]

My feelings at the moment too - sadly my partner can't walk very far now, a 15/20 minute walk is usually enough but like your husband @PalSal he paces around at home, he has lost the ability to do anything himself or think for himself so is always waiting for me to find something for him to do and also expects my attention all the time (then he'll regularly come out with 'nobody cares for me'!!). It's relentless, it's stressful, it's enough to make you want to scream at times. They have become children again, helpless, scared and reliant on the 'adult'. How have you managed to be Nick's carer for all these years? It's no wonder you're tired. I think I have to give up after the coronavirus and think about a care home because of his anger as well and starting to be issues with incontinence. If only we knew how long then we could plan, but we don't and your Nick is still quite young. It's no wonder you're angry, so many years spent caring for him and however many more. You seem like an amazing person and a devoted wife that's all I can say.

I appreciate your writing back. I am sorry you must deal with anger directed at you . That really seems unfair as you are doing your best. On the other hand, I am the angry person in our scenerio. And poor Nick does not deserve that. I had gone to look at some nursing homes in January. I think if we ever get out of this corona thing I will be ready for Nick to go into one. I am at the end.

 

[Bezzy1946]

I appreciate your writing back. I am sorry you must deal with anger directed at you . That really seems unfair as you are doing your best. On the other hand, I am the angry person in our scenerio. And poor Nick does not deserve that. I had gone to look at some nursing homes in January. I think if we ever get out of this corona thing I will be ready for Nick to go into one. I am at the end.

I emphasise with you - my husband who is 80 in June went into residential care at beginning of February. I was reluctant to let him go but he was incontinent, fell over and I couldn’t get him up and so very angry at me. I know he didn’t mean it but to be told to f...k off most days is not nice. He would follow me round the house all the time and I would shout at him and regret it straight away. I do feel guilty that I lost my temper with him and feel I let him down (even though our children backed me all the way) they said they felt as if they were losing both their parents to this horrible disease as I was so stressed. Miss him terribly especially now this horrible virus has stopped us visiting our loved ones.
Sorry for rambling on but it’s nice to talk to other people feeling the same emotions.

 

[White Rose]

I appreciate your writing back. I am sorry you must deal with anger directed at you . That really seems unfair as you are doing your best. On the other hand, I am the angry person in our scenerio. And poor Nick does not deserve that. I had gone to look at some nursing homes in January. I think if we ever get out of this corona thing I will be ready for Nick to go into one. I am at the end.

We can only do so much and at some stage we have to just accept that it's too much for us, I hope it works and you find somewhere suitable for Nick. I'm sure we all get bouts of anger at times at the situation we're in. I would say I'm more resigned than angry for the time being. But I can get angry with him if I don't get enough sleep e.g. when he's awake early in the morning but hasn't the thought process to enable him to get up and get dressed, so he'll just lie there tossing and turning, scratching, muttering, getting angry and then I have to get up and get him dressed because there is no chance of a lie in, that's when I get angry!!

 

[White Rose]

I emphasise with you - my husband who is 80 in June went into residential care at beginning of February. I was reluctant to let him go but he was incontinent, fell over and I couldn’t get him up and so very angry at me. I know he didn’t mean it but to be told to f...k off most days is not nice. He would follow me round the house all the time and I would shout at him and regret it straight away. I do feel guilty that I lost my temper with him and feel I let him down (even though our children backed me all the way) they said they felt as if they were losing both their parents to this horrible disease as I was so stressed. Miss him terribly especially now this horrible virus has stopped us visiting our loved ones.
Sorry for rambling on but it’s nice to talk to other people feeling the same emotions.

Very sad for people who can't visit their loved ones during this pandemic, yes you must really miss your husband. It seems like it was the right thing to put him into a home, unfortunately guilt is natural because we care. If we didn't care it would be easy. I feel I would be letting my partner down if I put him into a home but he did have a lovely time during a respite week and there's more for him to do and other people to talk to. Mine follows me around all the time as well, seems to be at a similar stage to your husband, it's enormously stressful, hard not to shout sometimes just to relieve some of the stress, but then of course you do regret it because you know it's not their fault they have this cruel disease.

 

[Lawson58]

I appreciate your writing back. I am sorry you must deal with anger directed at you . That really seems unfair as you are doing your best. On the other hand, I am the angry person in our scenerio. And poor Nick does not deserve that. I had gone to look at some nursing homes in January. I think if we ever get out of this corona thing I will be ready for Nick to go into one. I am at the end.

I too have read many of your posts and have no idea how you have sustained your constant care of Nick for so many years.
I am afraid the term 'burnout' comes to mind when I read what you say and it is not physical burnout but emotional and psychological. People who have your energy can always find a way to get through the physical aspects of caring, simply because you do what has to be done.

The emotional and psychological draining does not respond in the same way and eventually it takes the greatest toll of all.

I know you have good family and perhaps they could give you respite, not for you to go away but to be able to disappear into your room and sleep till you are ready to move, stay in bed until you want to find a sunny spot to sit in, the sort of things you would love to do in a Nick free week.

You have done enough, just for a little while. Let some else carry the burden just for a brief time..

 

[White Rose]

The emotional and psychological draining does not respond in the same way and eventually it takes the greatest toll of all.

I agree with everything you've said @Lawson58 but especially about the emotional and psychological draining. @PalSal you have a right to your own life, more than ever after all those years of caring. I'm only in year 5 and as the dementia has progressed I am at the end of my tether now. I was only thinking the other day, the physical caring I can manage, no problem, but the anger, mood swings, too little sleep because of needing to get up in the night for my partner and his early waking, his talking to himself, muttering, complaining, trying to find him things to do because he's bored all the time, which means I have no time to get anything done in the home, it's too much. Then we've got the tasks of running a home, all the washing, the gardening, car maintenance, finances, everything is on one person's shoulders, we can't do it all. We don't know where life will lead, we never know if we've taken the right path but definitely losing our own health caring for someone else is not the road to take!

 

[PalSal]

Thanks again for all your responses.
But for the time being no care home is going to take anyone from outside. I would imagine, they are not taking new patients in the current situation.
And as for my children. my daughter just had her 3rd baby March 1 and my son is serving in the Swiss Army medical core so there is no respite for me during this pandemic. The other two children live in Norway....their involvement with their father has of course been limited.
I must wait and see if the daycare re opens with the restriction lift. Or that some of my contract carers will return to help. But at the moment I must accept this is the situation many of us find ourselves in and get on with it.