Care in the community

After six weeks of H being in the care home with  S staying on his own in their flat, we admitted defeat and took her back home. The final straw was when a fellow dementia patient wandered into her bedroom in the nursing home and hit her, causing her to fall over and cut her leg. The first I knew about this was  a call from the Wiltshire adult safeguarding team, which persuaded me that she needed to be somewhere else. While I have no beef with the nursing team at the home, who were kind and friendly, there simply weren’t enough of them to go round, to administer enough one to one care that she needed. It doesn’t take a rocket scientist to work out that if you are Mrs sweet mild old demented lady who will happily sit in the common room smiling, you will naturally get more attention than Mrs Spitting and Shouting who swears and shrieks every time you go near her. That’s just how it is and as a result she spent most of the time sitting in her room on her own which was just plain miserable ( not that she really noticed, but we did). It has been  impossible to know what to do these  past couple of months for the best and it feels as if we are constantly veering from one crisis to another, but we move on mostly because we have no choice. None of this is easy and I know S absolutely hates all this fuss and interfering and  certainly makes sure we know how much he hates it at every possible opportunity.

Despite being very clear that he wanted H to come home more than anything , he made everything as difficult as possible to make it happen , as we attempted to move furniture and shift things around so that there was room for a full time carer. and for H’s bed. Unfortunately at ninety three years old this is all beyond him, though we have tried our best to make it as painless as possible.  His default position has always been, and continues to be  (magnified) , to shout if he doesn’t get his own way, which doesn’t help with first impressions, particularly if you are a brand new carer who has just arrived from the station and must hope you have mistakenly come to the wrong flat. His absolute refusal to hand over the key to the garage enabling us to store stuff in it is also   challenging. In the end I resorted to sneaking  in and borrowing  it from his desk drawer when he is in the loo. We have now had a copy cut  that we keep by the front door.

We ordered  a comfortable single bed in order that he could move into his study, leaving the carer to have the double bedroom. This bed was duly delivered by Mr Sands , a sweet local man with a family firm in Gillingham. Poor Mr Sands had no idea what he was getting into when he turned up at the front door to find S shouting at him to “bugger off” while waving his zimmer frame at him in a rage. His grand daughter who had come along for the ride retreated to the van in horror. Eventually the bed was put back in the van and Mr Sands departed. When I asked S what he intended to sleep on he said he would sleep in a chair. In the end I managed to find a smaller fold up bed which he accepted on the basis that it was a camp bed(?) even though I explained it wouldn’t be as comfortable and he might fall out of it. “Shut up” he yelled.

The next hurdle was the table in the sitting room, a  heavy walnut circular table that needed to be moved in order to fit H’s bed and equipment at one end of the room. This table serves no purpose other than to be the place S places his newspapers on with military precision each morning ( think hotel). He insisted that rather being put in the garage it should be re positioned  in front of the fireplace, obscuring the telly  and meaning that you had to climb over it to get to the armchair or to open a window. This arrangement will suit perfectly he said and stomped off to his study, squeezing round the corner of the table to get out of the room. In the end we took  it to bits ( helped by a large bit of it falling off) and carried it through to their garage ( with the stolen key) while he watched the news, oblivious to us lugging it past his door. And when he finally shuffled  back into the sitting room he didn’t even notice it had gone, or mention the newspapers that  had now been  carefully placed on a long foot stool in front of the sofa

So H came home from the nursing home and carer number one took up residence. The fact that we are now on carer five in a month, gives an indication of how well it hasn’t gone, though there is no doubt in my mind that overall this situation is much better for both of them.  S has people around to help when he falls out of his camp bed and to make sure he has food on the table and its reassuring to known that he is not alone. Sometimes they sit together and H smiles at him, but he is increasingly frail and bewildered and his memory is going at an alarming rate and he mostly retreats to  the peace and quiet of his study . H’s dementia continues to be up and down, every now and then she is calm and sweet, mostly not, agitation and paranoia usually overtakes her by lunchtime and the afternoons are fraught. She is convinced that she lives somewhere else and that I have hidden 59 people in the flat. We have a wonderful team of support carers who come and help, patient and calming and we get extra help in overnight when needed as sometimes she wakes up 9 or 10 times in the night . If nothing else, she is in her own flat  and can look out at the blue tits hopping about on the bird table and see the wind in the trees.

As of next week we are going into a new system and are getting rid of the live in carers. It is too disruptive as they never stay long enough to settle and makes it very hard for everyone. So we are introducing a system of shifts so that there is still full time care but nobody actually lives in. This way S will get his bedroom back with his double bed and more space. Though of course when I told him that he said ” I’m not moving”.

Watch this space.