Image of Mike and Mary.
My husband Mike has Alzheimer’s and mixed dementia and is in residential care. He has been in this particular care home for a year now, although he first entered residential care in September 2017. The last twelve months has been unlike any other I’ve experienced in my lifetime- Coronavirus, Covid 19, the Pandemic, whatever you would like to call it struck ( literally) a few weeks after Mike entered the home.
Those few weeks before lockdown allowed me time to get to know the home, its carers , their routines, and to help Mike settle in. I visited most days, determined that this time things were going to work out, hopefully for it to be his “forever home”. I’ve never really liked that phrase, but when we moved to Anglesey in 2011 to begin our retirement in our “forever home” little did we know what was in store for us…..a journey of a most unexpected kind…
Anyway…then lockdown- the care home locked down swiftly and before most other care homes in the country..
We all know what happened next ….nothing! For ages.
We are now halfway through February(at the time of writing) and guess what? We are still in lockdown, lockdown three apparently, though it has felt continual as far as visiting Mike is concerned, with a few haphazard socially distanced visits over Summer and Autumn.
Mike didn’t cope too well with the visits, he couldn’t understand why he wasn’t allowed to sit next to me, hug me, come home with me. Many times I left the garden or building, not looking back, tears in my eyes and crying on my way home ( a 45 minute drive)
I couldn’t get past the thought that he thought I had left him, deserted him , didn’t care, because why else would I behave this way? I tried to explain that the prime minister had said that nobody could visit while the virus was making people poorly. I’m still saying that to him….
Since the beginning of November I have seen Mike 3 times “face mask to screen” The last time I saw him was a week before Christmas. The home were beginning to do rapid testing for relatives and so I was tested, sat in the car for half an hour and then was allowed into the visiting area in reception. I was “allowed” to sit next to him, hold his hand , hug him and kiss him on the cheek. It took him a while to realise that he could do this and I had to physically show him how to hug again! Mike, who everyone said was the best hugger they knew! When he felt his arms around me , he remembered what to do , hugged me and patted my bottom in the way he always had! Needless to say, again, it was a very emotional experience for me- I hadn’t touched him since February 2020, and tears flowed. Even the carers said that they had cried seeing relatives enjoying physical contact again with loved ones.
The day after that, lockdown happened again and that was that. A lovely Christmas present , but left you wanting more.
I have to say that throughout this time, the carers have been amazing, welcoming my daily phone calls, keeping me informed, facetimes, sending photos etc – doing their best to keep us in touch.
At some point during November Mike’s meds were tweaked- the consultant came along and changed things. Whatever she did ( no need to go into details!) a small miracle occurred. The staff started to tell me how Mike’s temperament was changing- for the better- and they felt that they were beginning to see his real character emerging. I could see this too. I had been feeling very anxious about him as he wasn’t eating well, he wasn’t very sociable and he was spending a great deal of time in bed sleeping. He had lost weight and was looking permanently anxious and unhappy. Also he was barely speaking.
Now , he was appearing cheerful, relaxed , and trying to tell me things. The facetimes and phone calls continue, and I am so much more relaxed , knowing that finally, after a couple of years, Mike seems to be settled, quite happy and enjoying socialising in the home. Much more like the Mike I know and love.
I am so happy about this, I often wonder how I would have coped through the pandemic if he had been at home , with no day care or respite, no socialising , being on our own for most of the time. I have friends who are caring for their loved ones at home – some with paid carers coming in, some without professional support. They are on their knees, without day care and respite care and I really feel for them. Mike is in the best place – he has a better social life than I have and I’m pleased for him. I have to look at it like this, despite the fact that now his family,(the care home) mostly doesn’t have me in it- I’m on the outside looking in, trusting the care of one of the most important people in my life to others whom I don’t really know. I have very little input now and it’s so hard. I have to look at it positively and believe and know that he is safe and well.
But at what cost? This time in Mike’s life is precious, and not being able to see each other is a huge loss. I have made every effort to help Mike to remember who I am by my phone calls visits , cards etc etc , but it is so hard to keep the emotional and physical support and knowledge alive when we can’t meet properly…
I hope and pray that there IS light at the end of the tunnel now we have had the vaccination, and testing is possible, relatives and residents HAVE to be allowed to see each other, it’s inhuman not to allow this. I have been very understanding throughout about the necessity to keep residents safe, which is obvious. The care home have done an excellent job in protecting their home- I applaud them totally for this. But my patience is beginning to wear thin- I need to be able to see Mike and he me- I have had lots of emotional support through this , but he has only had very good loving care , not the special love and affection that can only come from his family. He needs it , and I desperately need to give him this before it’s too late.
I hope and pray that it will come soon. I am not alone in thinking this as you know. There are moves from various organisations and individual people who are all believing the same thing….the government are well aware of this, it is a basic fundamental human right to be able to be free to love and be loved, especially in social care situations.
Last week I delivered some necessities and treats to Mike- I left them in reception. So I took the opportunity to ring him from the car park , hoping that the carers could bring him to wave through the lounge window upstairs. A staff member from the lounge window downstairs shouted through the window to me to say that I’m not allowed to do that. I had a conversation with her and then came away feeling that I’d done something naughty. On the way home I began to feel how ridiculous it was at my age to be told I couldn’t wave to my husband through the window!!!
Things have to change soon, surely……
Mike with Mary during lockdown:
Written by Mary in February 2021