Needing advice re caring for someone with mental illness please

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Hello, To try and cut a long story short I have been caring for my wife to some degree or other for many years. She has been housebound for just over three years mainly due to her disability which relates to chronic spinal issues.

In January this year she became seriously ill with a number of other physical and neurological conditions that mimicked a stroke and spent 2 months in hospital.

The legacy of that period was to leave her with much reduced mobility, severe anxiety, depression and some paranoia (variable in degree). She is at home in a hospital bed, commode walker etc. I am her main carer. We have professional carers coming in twice a day for 30 mins - just to do the personal care. I do everything else.

We have had good support from our daughter, the GP, Psychiatrist and Physio although my wife has not been prepared to agree to some of the recommended medications and therapies.

Whilst I am comfortable and used to dealing with all the “physical” requirements of her care, I need advice on handling the additional stresses associated with caring for someone with mental illness.

Whilst, if she takes all her meds, she sleeps at night (which helps a lot), the days are without much respite and very unpredictable - she can be calm one minute and very agitated the next. Even in the last week we have had the MH crisis team out and paramedics.

I try to do all the basics, eating properly, exercising when I can, getting short periods out with help from my daughter. However, I think I would benefit from specific advice/techniques to deal with the Mental Health challenges (like her anxiety and paranoia) as calmly as might be possible. Currently I feel like I have an over exaggerated stress reaction to every new issue that arises and I don’t think it helps either of us.

The GP has sent me a whole lot of links to look at and I’m working my way though them but a lot of it is quite generic. As I am time poor I thought I would start here in the hope that someone might point me quite quickly in the right direction.

Many thanks in advance for any help.

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Hi there @NeilMH, it is a hard slog. What you need to do is write everything down but speak to her social worker /care manager and say that you are struggling and need some sort of help and plan put in place as you don’t feel you can manage her.
I have told mental health where to go on times due to lack of help. I look after mum and sometimes on the phone to someone in the mental health daily.

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@NeilMH It is mega difficult and I can relate to some of your post. It is the unpredictability that is hard to manage isn’t it? At the moment I feel I am lurching from ‘crisis to crisis’ and the hard thing is knowing if husband really going downhill or just using it to control me and stop me going out.

I do not know if you have a local ‘Support for Carers’? If so it might be worth seeing if they offer a Telephone Befriender Service? Often these volunteers have been carers themselves. Also some branches have regular meetings. Sadly I cannot easily get out but over the last 13 years the befrienders have been a lifeline.

Can your wife be left for short periods alone? If so, then I would make every effort to get out as and when you can even if just for an hour or so.

@Michael_1910123 Does have a point …it might be an idea to say you are struggling NOW before it becomes unbearable and see if any more support is available?

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Thank you very much. I have spoken now to GP and her Psychiatrist to say I’m struggling with some aspects of the care and they have provided me with some contacts that I am working my way through. In the short term I’m trying to get some specific tips/techniques to handle the variable nature of the anxiety and sometimes paranoia. I’m by no means at the end of my tether but I want to make sure I don’t get there.

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Thank you very much @selinakylie. I have already reached out just to say that things are getting difficult and I’m starting to get more advice. I would have the same problem as you regarding the meetings but I will definitely look to see if they have a telephone befriender service. My wife can be left for short periods and I do go for a walk around the local park or have a coffee with my daughter at the local cafe. Last week my daughter looked after her for 5 hours while I went to see a recently bereaved friend - so I’m trying to be sensible on that front. Plus I 'm trying to do all the other stuff - eating properly, exercising etc.

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@NeilMH Self care is so very important. Maybe check out Roll Call? We share our ‘ups and downs’ and yes, sometimes some humour (often black) creeps in. Been a life saver for me at times.

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What I’m going to say now is difficult to answer, but it needs to be said.
Would you prefer it if your wife moved to a care home?
Were you aware of her new mental health issues before discharge?
Did she have an NHS Continuing Healthcare Checklist before she left hospital?
Do you feel it was an unsafe discharge?
What would help you most at the moment?

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@selinakylie thank you - I will do that.

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@bowlingbun thank you. With my son and daughter we have discussed the care home option but it’s not all upsides for my wife or me. Yes I was aware of that she would have a legacy of mental health issues that would last for many months. I don’t think it was an unsafe discharge but there are other scans and procedures I would rather they had done when she was an inpatient which might have thrown more light onto her issues. In fairness, for the first few months we seemed to be on a very slow path of progress but things have gone pear shaped since then. She didn’t have NHSCH assessment but I lot of assessment was done regarding her needs to stay at home - equipment, support from carers, district nurses, etc etc. The thing that would help most at the moment are specific tips on how to handle her anxiety, depression and paranoia.

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When I was newly widowed, newly disabled after a car accident, still recovering from cancer surgery, left to run our business on my own, my very disabled mum was very demanding. I found counselling directed specifically at managing mum’s expectations was very helpful. Whilst your situation is different, you might find a counsellor helpful? The first one I saw was free, but I wasn’t told that I could only have 6 sessions! My GP then recommended a private counsellor, eventually funded by the council after a Carers Assessment. After a few weekly then fortnightly sessions I could see her whenever I needed, and she was very supportive after mum died. The strategies she suggested were very helpful, especially how to avoid jobs without saying No.

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@bowlingbun yes, thank you. I had just started to think about that. I started looking at the BACP site last evening. It’s just a question of trying to find the right one, so I am going to go through the profiles carefully.

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The one I used was recommended by my GP. This turned out to be very helpful, With my permission, several times she wrote to update him with the situation and he was more understanding. (Mum and I both used the same surgery since the 60’s)

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Thank you @bowlingbun