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Real Voices: accessing support when a loved one has dementia

Jan’s beloved husband Stuart was diagnosed with dementia in 2013, and the family took the difficult decision to move him into a care home. In this week’s Real Voices, Jan describes the emotional toll of slowly losing the man she had known and loved for more than 40 years to the disease, and the support she was able to access from her husband’s care home.

My husband’s dementia came on very slowly.  Stuart had started to behave a little oddly, and had also become a little forgetful. The GP suggested we get it checked out, so Stuart went to a memory clinic, where the consultant said that he had borderline dementia, but with his high IQ (158), the drop wasn’t going to be as noticeable as it would with somebody who has an average IQ. We were told to come back when he got worse. A couple of years later Stuart had a massive stroke, and was in hospital for thirteen weeks. By the time he left hospital he had much more advanced dementia. In the meantime he had become very precious about his driving, and he would become very cross if you tried to help him or tell him which direction to go in, for example. He was never nasty, he would just refuse to take directions and insist that he knew where he was going even when it was obvious that he didn’t. After the stroke he had surgery on his neck. He had been recovering from the stroke quite well, and he was able to feed himself, he was reading, it was just that he was slow. Then he had this surgery, and I don’t know if he perhaps had another stroke during the eight-hour operation (as is quite common) but when he returned from it he was so much worse. He couldn’t read, he couldn’t feed himself, he was doubly incontinent, and he only had movement in one arm. We talked to the staff, and there was disagreement among them as to whether it was actually dementia. Everyone except Stuart’s consultant thought it was, but the consultant said no. Stuart came home, and it became obvious that he was getting worse by the day. He couldn’t even keep himself sitting up straight, after a few minutes he would flop over and be unable to get up again.  

Stuart had a few more TIAs (Transient ischaemic attacks, or “mini strokes”).  One day he just sat there, not talking or moving, only breathing. At that time we had a GP who was a specialist in complicated patients, and he came out to see him. He said “Stuart’s gone into a fugue state, which means that his brain cannot cope with the current situation and has switched off.” The GP said he would come around eventually. At that time we were only getting three hours a day of support from social services, and no help at night. Nor would they teach my daughter and myself how to use his hoist, so that if his pads needed changing at night we could do it. We were meant to just leave him in dirt overnight. 

Stuart stopped reading. He stopped watching his favourite films and television programmes. While he was in hospital, they sent the optician to see him. Stuart told me that he didn’t know how he was going to manage, that he could see the letters but couldn’t remember what they said. This is from a man who was a lecturer in economics, and always had a book in his hands. A friend came to see him, and said that he was so diminished that she didn’t know if she could bear to visit again. That’s exactly the right word to describe how he was: diminished. 

He went on getting worse and worse. Eventually he had to be admitted to hospital. The consultant said they didn’t know why we kept him at home with such advanced vascular dementia. I was so angry. Anyway, Stuart had a good social worker who helped us get him a place in a care home. They did far more for him there than the hospital had ever done. We’d been struggling to get physiotherapists to see him when he was at home, but at the care home they had a resident physio who worked really hard to get Stuart’s arms working again. There had been some damage to the link between his brain and his lower half, so he couldn’t feel when he was soiling himself. 

Stuart didn’t want to go into a care home, but due to my own disabilities I couldn’t care for him anymore. I couldn’t pick him up if he fell over, and he had developed a form of epilepsy where one minute he would be walking fine, and the next he would be flat on his face. My daughter could help him, she could pick him up and put him into bed, but it’s awful to have to do that for your father. It was embarrassing for both of them. We lost a little bit of him every day. With vascular dementia, you don’t experience a slow and steady decline. It’s erratic, you could go downhill for a few days, then improve, then plateau. Sometimes there are drastic changes within a few minutes or hours. Stuart told me that it felt to him as if when he was in bed, some bugger completely changed the world around him overnight, and when he woke up he didn’t know where he was or what he was doing. They had to take the alarm button out of his room, because he didn’t know what it was, and he would play with it. 

It was horrible not having him at home. The district nurse asked me: “Did you promise to  cherish your husband when you got married?” I said I had, and she told me that putting him in a place where he can be properly cared for is cherishing him. It’s true. When he was at home, he got three short visits a day from the nurse. At the care home, he had round-the-clock care, and his every need was met. All of his laundry was done, all his meals were provided. There was entertainment at the care home as well. 

The only thing Stuart never ever forgot were the lyrics to the songs he used to sing. He was a folk singer when I met him. He had a songbook of over 160 songs that he knew by heart. The care home would host concerts every week, and the staff would always make sure Stuart attended them. Music just seems to soothe people with dementia. Stuart was still word perfect with the songs that he used to sing way back in the 1950s. Every entertainer who came in commented on it. 

I used the Dementia UK helpline during this time, who were very helpful. I spoke to Stuart’s geriatric consultant, who was honest with me and showed me the scans. He told me that Stuart’s brain was like a swiss cheese with all the damage that had gone on. After Stuart had been in the care home for about three years, the consultant told me that Stuart would probably have a year left to live. He died a few months after that. It was so sad to see this vital gentle man, who I’d loved and cared for for 45 years, unable to do anything except lie on the bed and stare at the ceiling. Every now and then, he’d have a lucid moment. One day, I was pushing him round the care home and showing him the different areas. Apparently I’d taken a wrong turn, because he looked at me and said: “Jan, the trouble with this tour is that you’re misinterpreting what I’m telling you wrong.” This from a man who’d barely managed to say yes or no for three weeks. 

The advice I’d give to anyone in my position, with a loved one suffering from dementia, is to lean on people. In the care home, the staff kept their eye on the relatives as well as the residents. I spent time doing arts and crafts sessions with the residents, for instance. Don’t give up, because something will get through to your loved one with dementia. You’ve just got to keep trying with them. Take help when it is offered to you. If the kind of help you need isn’t being offered, ask for it. There will be services in your local community who you can go to. There’s lots of places which host dementia cafes, where you can go with your loved one or by yourself, and access support and meet other people in the same boat. The care homes often run trips and days out, which are always great. I think there’s a misconception that care homes are a sad place, full of people waiting to die, but it’s not like that at all. It’s a vibrant place. There was constant entertainment, and not just music. We had magicians coming in to do shows, animal handlers came in with snakes and frogs and hamsters. Anything is an excuse for a party in the care home. During Wimbledon one year, a few carers dressed up in whites and we had a pretend tennis match, and we all watched and had strawberries and cream, and a glass of bubbly. It’s not a restrictive environment either, if you wanted a beer or whatever you could have it. You don’t stop liking a beer on a hot day just because you’ve got dementia. I found that it was much easier when he was in the care home, because I wasn’t his carer, I could just be his wife again. Others taking over his care meant that we could just be a married couple again. The hardest thing was that because of his paralysis we couldn’t cuddle, which was a big thing to lose after 45 years. My last piece of advice is always cry if you need to. Crying releases endorphins, which are the body’s natural antidepressant. Just let the tears flow, and lean on those around you. 

Jan is taking part in Dementia UK’s annual fundraising event Time for a Cuppa, from 1st-8th May. If you would like to take part or donate, please go to Dementia UK’s website.