How to help my poor man

[Fishermanswife]

Hello, my husband and I have been married for over 54 years and I am now also his only carer.
I am really beginning to struggle with the rapid deterioration in my poor man’s cognitive abilities. He was very unwell with Covid pneumonia a few months ago and his mind has worsened so much in these short months since. I can cope with the constant repetition of questions, the forgetting that he’s just eaten a meal, answering his nightly enquiry about what he wears to bed etc what I am not doing very well with is the sometimes overwhelming feeling of sadness that he’s aware that his mind is going, and my pity for him.
He definitely feels safe when he’s with me, and he’ll follow me into the kitchen when I go to make us a cup of tea, and he’ll say ‘I was missing you’, or he’ll come into the hall and shout hello if he’s not sure where I am in our small 2 bedroom bungalow, the responsibility of looking after him is like that of caring for a child at times, but I’m very careful to keep my tone light, not sound irritated, or patronising, when I’m so resentful that my life has changed for ever too. It’s a dreadful condition that I wouldn’t wish on anyone or their family.

 

[SeaSwallow]

Hello @Fishermanswife and welcome to the Dementia Support Forum. It is quite common for people with dementia’s cognition to deteriorate after an illness especially one like Covid pneumonia. His condition might slowly improve but he may not get back to where he was prior to the Covid.
You also say that your husband is following you and wants to know where you are. This is called shadowing and is common as dementia progresses, sometimes anti anxiety medication can help with this.
It is understandable that you feel resentful at times, dementia is a horrible disease, both for the person with dementia (PWD) and the carer. You are doing well by keeping your tone light and not sounding irritated etc. It’s not always easy.
Do you have a break from caring now and again because that can make our job so much easier. If you have not already done so, please contact your local social services to request a needs assessment for your husband and a carers assessment for your self. About 18 months ago I was finding it hard to cope, I now get two half days respite and it’s amazing the difference it makes.
Keep posting on the forum and let us know how you are getting on.

 

[2ndAlto]

Hello @Fishermanswife and welcome to the forum. I'm so sorry to hear about your husband who sounds so much like mine. I remembered recently during the pandemic lockdowns when we all wailed "I just want my life back" - and it struck me that's how I feel now. Not that it helps...

 

[Grannie G]

He definitely feels safe when he’s with me, and he’ll follow me into the kitchen when I go to make us a cup of tea, and he’ll say ‘I was missing you’, or he’ll come into the hall and shout hello if he’s not sure where I am in our small 2 bedroom bungalow,

You are doing so well.

This echoes my experience with my husband. If I returned from the kitchen even after the short time it took to make a cup of tea, he would ask if I'd been out.
Also in our small 2 bedroomed bungalow he would stand at the living room door and look left and right, not sure which way to go.

but I’m very careful to keep my tone light, not sound irritated, or patronising,

This is so stressful for you. You are permanently on guard.
Have you considered trying to get some help?

 

[Fishermanswife]

Hello @Fishermanswife and welcome to the Dementia Support Forum. It is quite common for people with dementia’s cognition to deteriorate after an illness especially one like Covid pneumonia. His condition might slowly improve but he may not get back to where he was prior to the Covid.
You also say that your husband is following you and wants to know where you are. This is called shadowing and is common as dementia progresses, sometimes anti anxiety medication can help with this.
It is understandable that you feel resentful at times, dementia is a horrible disease, both for the person with dementia (PWD) and the carer. You are doing well by keeping your tone light and not sounding irritated etc. It’s not always easy.
Do you have a break from caring now and again because that can make our job so much easier. If you have not already done so, please contact your local social services to request a needs assessment for your husband and a carers assessment for your self. About 18 months ago I was finding it hard to cope, I now get two half days respite and it’s amazing the difference it makes.
Keep posting on the forum and let us know how you are getting on.

Thank you Seaswallow, I just didn’t know where to turn tbh. My husband hasn’t had any kind of formal diagnosis as yet, although the Mental Health nurses who came in July to see how he was with his poor memory, thought perhaps he had Vascular Dementia, however he’s had another period of ill health, is still being investigated for possible Hodgkin’s Lymphoma, and his cognitive abilities are much worse than then.

 

[Fishermanswife]

You are doing so well.

This echoes my experience with my husband. If I returned from the kitchen even after the short time it took to make a cup of tea, he would ask if I'd been out.
Also in our small 2 bedroomed bungalow he would stand at the living room door and look left and right, not sure which way to go.



This is so stressful for you. You are permanently on guard.
Have you considered trying to get some help?

Thank you, it’s so helpful to know that our experiences are ‘normal’ for our situation. I will definitely be seeking help in the new year, for both of us.

 

[SeaSwallow]

Thank you Seaswallow, I just didn’t know where to turn tbh. My husband hasn’t had any kind of formal diagnosis as yet, although the Mental Health nurses who came in July to see how he was with his poor memory, thought perhaps he had Vascular Dementia, however he’s had another period of ill health, is still being investigated for possible Hodgkin’s Lymphoma, and his cognitive abilities are much worse than then.

Oh dear. I am sorry to read that your husband is being regarding Hodgkin’s Lymphoma, you have so much going on it must be so hard for you.
Even though he is being investigated for the Hodgkin’s I would suggest that you keep on at your GP and the mental health nurses as depending on the type of dementia there are medications that can help.
In the meantime keep posting here as just sharing what is going on can help.