I wanted to do a quick update on my dad. I keep saying that I don’t want my blog to become all about him and his dementia but so many of you have asked and invested in our story.
About 6 weeks ago mum called me at work in a terrible state as the Social Worker had told her that dad was moving that afternoon to a unit over 150 miles away. Unfortunately, we had no options open to us – the local Mental Health Services had been unable to source a bed for dad within the area – although even then we thought he would stay within Norfolk or maybe Suffolk, not Northamptonshire
Ultimately mum took it all in her stride and, after dad was moved on the Tuesday, she made the 4-train trip to Northampton at the weekend and stayed for 4 days to visit and leave dad’s clothes.
Dad was really upset when he first saw mum and then when she had to leave, as he seems to have lucid moments especially around her and they had been telling him that mum would be visiting. On the first visit mum and dad were in a private room but with a member of staff outside the room; at this point of course they were being ultra-cautious as they still had not seen a pattern to dad’s outbursts. The second day they were happy for them to sit with just an emergency buzzer. Dad still didn’t have his own clothes despite them having been named by mum, which was quite upsetting for mum. I was very cross about this, this is a simply thing but so important for maintaining identity and, more importantly, dignity. However, they claimed that they had to also tag dad’s clothes with the ward ID.
The staff she met with on the Monday promised that dad would be moved nearer home again as soon as possible but also said that there were 2 other gentlemen waiting to be moved back to Norfolk too. The stress for mum doing that journey meant that the next time she went up was 10 days later – again for another 4 days. This time she was even more distressed as they’d moved him to different ward and his clothes STILL had not caught up with him.
As she was leaving a member of staff commented on mum’s “unusual visiting pattern” and asked had she considered how dad feels that she comes for 4 day visits then not for another week or so. Mum was devastated and I can’t tell you what a good job it was that I wasn’t there when she said that. Evidently one of the nurses who DID know mum and dad’s situation kept her word to feed back to the Social Worker on the Monday and on the Tuesday, nearly 4 weeks after he went to Northampton, they moved him back to Norwich. The Norwich facility was so much nicer and Mum even managed to drive there for the first time in 15 years to visit him. Amazingly all his clothes had turned up this time, too.
We were just getting used to him being in Norwich, and mum getting used to the journey when they announced after a week that he would finally be moving back to their home town.
This Sunday I saw him for the first time in 2 months; much as I’d tried I hadn’t prepared myself for his deterioration. The unit is lovely, which was a relief because a couple of reviews had not given a very positive impression (as an aside, I don’t really understand reviewing of these NHS run places, it’s not like we had any choice where he went at any given time, it’s not a reviewing a hotel, and surely if people have complaints there’s a better way of addressing them). It’s divided up into self-contained units which “spoke” off a welcoming garden (too cold to sit out yesterday though). When we arrived, I saw dad immediately – pushing an empty wheelchair in the corridor. It was clear that he recognised mum as his face lit up as soon as he saw her. When he saw me, it was like he knew that he knew me, but wasn’t quite sure who I was.
We managed to get him to abandon the wheelchair and come and sit in the lounge with us for a few minutes and I showed him some recent photos on the iPad which kept him amused for short while. He kept nodding off but I don’t know if that’s due to the medication or if it’s down to him being awake in the night still. Because of his terrible dysphasia conversation is virtually impossible. A few months ago he would still attempt to find words and form sentences and become frustrated when he could not. But now his speech is mostly unintelligible with a few fleeting glimpses of who he once was (he called my mum “Bridge” quite clearly at one point when he wanted her to follow him). Mum finds it difficult to sustain an hour’s visit, but I suggested she take old photo albums in for him to look at as it was something he did a lot when he was still at home. It’s almost like when you have a toddler who you can understand clearly but no one else can.
Then he was up and about with the wheelchair again. He was most precise in his steering of it, he knew exactly what he was doing and was only distracted by the door opening, at which point he made to go out into the garden but the door closed before he got to it. The staff were patient and dealt with things with as much humour as one probably can. Dad won’t join afternoon “activities”, preferring his own company. He was never really one for sitting around doing nothing, which I think manifests itself with the behaviour he demonstrates now – moving furniture and rearranging stuff. Mum walked with him but as he disappeared around the corner for another time we decided to leave. Mum has found it’s better for him if she doesn’t say goodbye.
My mum is coping so well, not only does she know that dad is in a safe place, but she is actually getting sleep and time to herself. I think it will take some time for her to get into a routine and get used to being able to go places and do things but I’m so proud of her and how she is handling things.
I cried, when I sat there watching him pushing the chair round. Mum was upset that she hadn’t prepared me enough, but to be honest I don’t think that would have made any difference. I still imagine him as he was 10 years ago, before the stroke. Some time ago I wrote the post “He’s still my dad” and he always will be but he’ll never be the man he was again, and that is the most heart breaking thing about this horrible disease.