The Next Chapter

Nov 2023-Jan 2024

Photos will be at https://www.facebook.com/theimportanceofbeingrichie

Who knew that moving Richie into a supported facility would involve so much time for all of us!  I think I had the naïve notion that there would be less ‘admin’ to have to do but that is definitely not true!  There was paperwork and benefits to sort out; tenancy agreements, housing benefit, change of circumstance; Mum is down as the approved person to deal with all Richie’s benefits but I have Power of Attorney so really, I need to be the one to deal with everything; notifying the relevant agencies takes so much time – phone calls, emails, scanning the necessary paperwork, just finding the right people to speak to, to ask the right questions – none of it is simple.  I started it in November and am still waiting for confirmation that I am now approved.  Then I can notify them of the changes which took place in November! 

Add to that sorting out the right furniture from his stuff in storage and liaising with OT about specialist equipment; setting up a system for his shopping and for him to have cash that the new house can use; lots of questions about his likes and dislikes and how he reacts to certain things and above all making sure that all his needs are being met and his familiar and favourite things are with him.

He is slowly settling in. It’s not been plain sailing and he has reacted quite badly at times to his new environment, usually after we have been to visit as we probably stir up memories of home and confusion about why he isn’t there.  He was also ill with some sort of flu/virus over Christmas which didn’t help his general well-being.  He obviously felt unwell and was very sleepy.  He didn’t want to go outside; as it was so cold this might not have been a bad thing but a little bit of fresh air and sunshine (even winter sun) is so good for well-being that it was a shame.  However, January seems to have brought a slow turnaround and he has been out to the park and to town and really enjoyed himself which bodes well.

Christmas was a strange one for us all.  Mum went to visit her sister in South Africa, a much-needed break for her after the emotional year which we have had, and a chance to belatedly celebrate her sister’s 90^th birthday which was in August when there was absolutely no chance of Mum being able to get away.  The girls and I had a very relaxed time at home; we visited Richie as much as possible although Christmas Day didn’t quite go as planned. I visited him in the morning to open some presents which went really well.  But by the afternoon when we arrived with snacks and a game he was tired and overwhelmed and didn’t want to see us.  It was disappointing but Georgie and I had a wonderful time with him a couple of days later when he was feeling better, opening some more presents and looking at all the ones he had got, and Connie was able to visit a couple of weeks later when he was really pleased to see her.  

We have had several meetings with all the agencies who support his continued well-being. The learning disability team are worried that the supported living isn’t going to be beneficial long-term as his dementia progresses, but the other option is a nursing home which comes with its own set of difficulties – the main one being that he is classed as too young to go into many dementia specialist care environments.  His social worker is an advocate for him to have the opportunity to stay in supported living as long as possible.  She and his whole care team recognise what an intelligent man he is and how difficult it is for him to deal with his increasing confusion and inability to manage any of the things which he was able to do for so much of his life. 

His care team in his new home are so good with him; they really want to do everything possible to make his life the best it can be.  They treat him as an individual, sharing a laugh and joke, recognising his ready sense of humour.  They ask us questions to make sure that what they are doing or thinking of doing is something that he would enjoy; that he won’t feel that he is being talked down to.  They have recognised that his poor behaviour is driven by frustration at his inability to communicate and are learning the signs to look at for when he has had enough of something, or really doesn’t want to do something.  They read with him, play games, do creative things and help with his ever-growing library of scrap books of his life. He enjoys watching game shows with his housemate and the staff, often pointing when he knows an answer, and has regained his love of films, something that he lost interest in for a while.

Talking of films, we decided that it was time to empty the storage unit where we had stored his things after he moved out of his flat.  He had been paying a monthly rent for two years, the prices were going up and the units were moving to a less convenient place, so it seemed the right time to tackle everything.  We had moved the furniture either to Mum’s or to Richie’s new place, so all that was left were boxes of dvds and cds.  My daughter Connie came home for the weekend to help, it took three stuffed full carloads to move everything to Mum’s to began a huge sort out. There are films of many genres – childrens, family, rom-coms, sci-fi, comedies, horrors, thriller, action.  We sorted them into three main categories – 15/18 action/thrillers, 12/15 comedy and rom-coms; PG/U – children/family, and also put aside any box sets or series.  We estimated that there are over 2000 dvds and 100s of cds.  It took the whole weekend but we went through everything, creating a pile for Richie, Connie, myself and Mum.  There were many duplicates – there were 4 copies of ‘The ‘A’ Team’ film and I think Connie and I both have the set of Pitch Perfect 1,2 and 3!

I put a question out on a local sharing facebook site to see if people were interested in dvds and had a big response.  I am now slowly organising for those people to come to mum’s to have a rummage and take what they want.  Anything left after all of this will go charity and I will see if community centres etc. have a dvd sharing shelf and would like to add to their collections.   

I’m hoping that by the end of March they are all gone; so if anyone reading this still uses dvds and would like a rummage, please shout!