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This was a speech given by one of our members at a recent influencing opportunity, they wanted it to be shared anonymously.
My brief is to speak about transitions in our dementia journey.
M was diagnosed in 2013 with cerebro vascular Alzheimers. This was followed by visits to the memory clinic, with large gaps in between! The memory clinic was supportive, with different phone calls from various agencies offering support which I declined: I didn’t feel it was needed. I was strong. We could cope. During this period he had a hernia operation – imagine my surprise when I received a phone call from the hospital asking how they could make his stay more comfortable as they knew he had Alzheimers! Ten out of ten for effort there…
Sectioned and Hospital
After an increasingly rocky time – my husband had become delusional and difficult- suddenly I needed help there and then. Efforts to provide me with respite fell through after an unpleasant meeting with prospective care home providers.
He was sectioned and taken to the hospital with the memory clinic. This transition was incredibly smooth thanks to a wonderful CPN, Psychiatrist and GP who were all so quiet and gentle, explaining that he needed to go to hospital for a while for “a service” and check his meds. He went like a lamb. I went with him in the ambulance and my sister followed behind. It broke my heart when I left him.
Weeks followed with him ringing pleading for me to take him home, crying when I left. It was awful. Thankfully the staff kept me together. All the time he was there they were never anything but kind and patient with us both. I had many questions which they did their best to answer. I never got to see a care plan although I had asked for one and their communication after reviews was not good. I took notes and had someone there with me but I was left confused as to what they expected of me with visits out and home. I learned a great deal by watching the staff at work and my patience and frustration improved hugely while M was there.
At one of the reviews a young trainee psychologist asked if I would like to have some sessions with her as part of her placement- this was a God send (I believe literally) and my sessions with her extended well into M’s transition to the care home. It was like counselling and she gave me many coping strategies and really helped me to understand myself better- I was very thankful for that.
In January 2018 There was a review to discuss his care package to come home and out of the blue they recommended him going into full time care. That was a shock and it took some time to get my head around it- what should I do? My amazing GP was the most help in aiding me to see more clearly. My social worker and CPN were very supportive too. Because of the timing I hadn’t looked seriously at homes and when I found one that I really liked there were no vacancies! M is still on the waiting list there. In the end I had to take the place where there were vacancies and in he went!
Transition to Care Home
It was chaos – I hated it! The home had recently been taken under new management and was being refurbished with painters and builders everywhere. This was so unsettling. I hated his room, the layout of the lounge, dining areas, the food, everything. This place was meant to be his home and it just wasn’t. My belief was and still is that M is entitled to the best quality of life possible in the place where he may end his days and this wasn’t it.
Oh how I struggled. Eventually we got his room changed: bought a bigger bed, a settee and personalised it. Gradually things began to get better. I was fighting M’s corner, so I would take my concerns and discuss them with management. Apparently when they saw me coming they would say “ watch out, here comes Mary with her notebook!” but they listened to me and took me seriously and wherever possible , made changes. I was instrumental in them employing a new chef who now produces a much better menu of nourishing food.
I needed to find ways to cope with this permanent change in our lives- not only was I trying to help M settle (which took ages) – I was coming to terms with it and I really struggled. Alicia, one of the ancillaries was a source of great comfort- she saw my distress and was there with hugs (still is!) and practical help. The care workers were very friendly patiently offering us both help and suggestions. They never openly showed irritation with either of us.
D, one of the nurses in charge, has been the biggest support. She scared me silly at first but she has seen me through my worst moments and said from the outset to never leave the building in tears. She has mopped me up and helped me to understand myself better and we are now good friends and share a laugh together.
A time came when I had to accept that M was there to stay and I resolved to throw myself into contributing to improving his quality of life. So now I’m strengthening friendships there with residents, relatives and staff. One of my singing groups sings there regularly and I take my ukulele in for singing sessions with residents. M and I play scrabble, dominoes and cards on the days we don’t go out. We read bible notes, bible passages and pray often. We love to have friends and family visit and we visit friends locally, go to church, go for walks, go shopping, go for coffee, – lots of places within very easy reach. We try to go out several times a week.
There are still niggles. I have asked for a review and it’s taking forever to get outside agencies to come up with a date.
It’s taken nearly a year but I think we are both feeling more settled now. M still asks to come home, or questions why we are turning into the care home lane after a trip out. It still hurts.
M is not coming home to live again- how do I cope with that knowledge and the sight of our lives that we have built together in this house? This was not part of the retirement plan! I have very good support from family, church, and friends. Between us , M and I have three children, and we have five wonderful grandchildren. I love their visits and we have lots of adventures and creative fun. I keep myself busy, singing, playing, socialising, volunteering, walking, church activities etc. At one of the many conferences I’ve been to I met up with a group of carers who have relatives living with dementia – we are a motley crew! Each of has a different story with a common element. We have been meeting once a month now for some time for a Carers Coffee Club.
We formed the group as we all needed and need to be able to talk through issues that we are dealing with and there doesn’t seem to be anything like this nearby. Now and again we have input from outside agencies who can give practical advice whether it is how to work through the funding minefield or through our emotions. The most important part of this however is the friendship based on mutual support . We know that we can contact each other at any time if things get really tough or if we just need a caring ear. We are not exclusive and welcome newcomers.
We have facilitated this from a need that isn’t being met by professionals and it works- it doesn’t need formality or structure, just a hotel lounge and a panad!
I need to say here that despite the changes that have taken place I am STILL M’s carer. I visit most days. I am his wife and advocate: no one loves and cares for him more than I do and I fight his corner.
One thing I would improve in this sector is closer and more frequent communication by one person from the time of diagnosis. Too many people, though well meaning, can confuse things. I refused help for a long time as I didn’t think I needed it. Pride is an issue as is the determination to manage for as long as possible. People like me are coping alone for too long because they don’t think they need help yet. People are falling through the net because they are not accessing the help early enough.
Care workers should not assume that people are OK if they are not hearing from them. By the time I shouted for help it was too late and things were taken out of my hands. So preparing for the future and support with this by a social worker or CPN or whoever is, I think, a vital element of forward planning for both the carer and the person with dementia.
So the above is a potted version of my story so far. I have pointed out the aspects that have helped us to make the best out of a distressing and heartbreaking situation. I continue to grieve for what is and guilt can still rear its ugly head. What has been helpful is the time and willingness given to me by care workers to talk things through with hugs, tissues, laughter and encouragement.
My own attitude has been unhelpful at times, at first finding fault and resenting the home and care workers for just being there. All I wanted was for M to be home with me; it isn’t home and it’s so sad. I had to change my thinking but it took time and determination. They have been so patient with me throughout.
For it to work I have to see the home almost as my second home- it’s all about building relationships. It’s the only way to find hope and a future. It’s about being Together In Dementia Everyday.