Marilyn and Bob’s Dementia Journey
Below you can read Marilyn’s caring story. With Dementia Action Week upon us, she shares her experience of caring for her husband Bob following his dementia diagnosis and why it’s so important for unpaid Carers to seek support before reaching crisis.
Marilyn and Bob’s Dementia Journey
In 2017, when Bob was just 64, he was diagnosed with mixed dementia. Bob was not particularly concerned by the diagnosis and did not believe there was anything seriously wrong.
I was not shocked, as two years before this I had noticed Bob was forgetting things and could not remember how to drive to familiar places. Although I was not surprised, it was still hard to hear. I worried about the future and how quickly he might decline.
There is nothing that can be done. There is no light at the end of the tunnel. I knew he would never get better.
Life after Bob’s diagnosis
Life carried on pretty much as normal. The diagnosis did not really change anything; it just confirmed my suspicions. Bob had good days and bad days and can struggle to find the right words.
Bob was a chiropodist and would drive to the houses of his clients. When he started to really struggle to find his way there, I would go with him to give him directions. Then it became necessary for me to actually drive him to his client appointments. This teamwork was successful until Bob retired at the age of 67.
When Bob retired, I did my best to keep us both busy. We went to Dementia Cafés, concerts and get-togethers to keep his mind active and stimulated.
Over the last 12 months, Bob has really declined. He was not sleeping and wanted to walk all the time. I had to keep the doors locked, and the strain of it all was exhausting.
The day everything changed
The breaking point came when we went to our caravan in North Wales. Bob insisted on going out and taking our French bulldog, Bella, with him. I could not contain him or persuade him to leave Bella behind. He said he would only be ten minutes.
After fifteen minutes, I knew he had got lost.
The owners of the caravan park helped me look for him, and I ended up calling the police. An hour and a half after he left the caravan, the police found him, and they were very kind and understanding. Tragically, Bella had died during the walk.
I was distraught, and Bob was extremely distressed and confused. I felt overwhelmed by the situation, but I also knew he did not understand what had happened. Of course, I could not blame him.
Bob did not fully understand what had happened to Bella, which made an already devastating situation even harder. This came during an already painful time. I had lost my dad the previous April. I felt like I was losing Bob, and then I had just lost my little Bella.
Reaching Carer Crisis
This was the last straw. I could not take any more, and I ended up in carer crisis. I went for a Carer’s meeting and just burst into tears.
Dudley Carers Hub was amazing. They could see I was on my knees, so they organised emergency respite.
Later, I had to make the devastating decision for Bob to move into permanent residential care, which I now fund.
I was not sleeping. I had no choice. It was heartbreaking decision.
Bob’s life now
Since September last year, Bob has been living in a care home that suits him well. The care team have adapted to his needs and understand his behaviour.
Despite his dementia, Bob remains active and surprisingly nimble, and the care team work hard to keep him safe while supporting his independence!
I visit Bob most days. Thankfully, he still remembers me, although he no longer remembers any of our family or friends that he has known for years.
We had such a full, happy life together. We had a house in Spain, we sailed in Corfu, and went on cruises. I am so grateful to have those memories to hold on to, although Bob sadly has no recollection of them.
Caring for someone with dementia feels like a living grief to me. The person is still alive, but the Bob I used to know no longer really exists.
Why I now support other Carers
I keep myself busy by going to Knit and Natter, the Dementia Café and Carer groups. I run a monthly Carer group and offer support to other Carers as much as I can, encouraging them to seek support.
I cannot help Bob much more now really, and I just think there are so many Carers out there at their wits’ end. I want to do something to help other people who are in the same position as me.
I still have bad days. I got up the other morning, heard some music on the radio and started crying, and I just could not stop.
The support I have received
In addition to having support from Dudley Carers Hub, I have also had help from Dudley Adult Wellbeing Carers Service.
Mandy has been great. I attend her meetings where she provides advice and brings in expert speakers. I have also enjoyed the trips she has organised for Carers.
I also want to say a special thanks to Dudley Me Myself and I group, and Caroline Millington who has been brilliant, and who gave us great support throughout our journey and still do now.
My advice to other Carers is to accept help and do not let yourself get to crisis point before asking. Support is available, and no Carer should have to cope alone.
Sharing your Caring Story
If, like Marilyn, you would like to share your caring story to help other Carers, please complete the form below.
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