I am anxious. Wondering what I will find at the home tomorrow. Will Bob know me again? My window visit is due at 2.10pm. It has changed from 11.10am because it was difficult as Bob was still sleepy. Sometimes, mostly on other days, he wasn’t out of bed. I was told this was person centred care if the patient chose or wanted to get up later they were able to. I tried to argue that he never stayed in bed till after 12 and he was up with me only 9 months ago at 6.30am and went to bed with me at 9pm without sleeping at all in the day. He slept all night at the home too so I was concerned about getting bed sores as that’s an awful lot of hours to spend laying down.

If he was brought to me in a wheelchair for a garden or cafe visit 2 m away (with a minder),  he was often falling asleep or in a kind of unfocused stupor where I couldn’t engage him. I asked if he was depressed or had given up the will to live. I had never seen him like this for so many visits week after week.

I was told by the nurse manager of the dementia unit it’s the onset of the disease, the way it progresses the way it is. But what if it wasn’t? What if it was the medication, the anti-psychotic drugs that he started in March. They are accumulative. Had he had the medication reviewed during covid? Had anyone outside the home seen him and this deterioration?

Two weeks ago he had a kind of spasm and his legs went rigid and he slid down the wheelchair. Luckily I was with my eldest son, a doctor. He was very concerned as he hadn’t seen his father in a while and was worried about his decline  and said he would be reviewed and observed if he was in hospital.

But he wasn’t, he was in a home and even the psychiatrist’s dementia nurse – who knew him since he was diagnosed – had tried to see him but was not allowed access.

So I rang the GP and asked her if anyone had actually seen him, not had a phone call or a Teams meeting but actually donned PPE and assessed him. No they hadn’t. I insisted there and then that a doctor visit him and advised them what I was most worried about. I said that I need to know if the medication was causing the sleeping and decline or the disease. I was really worried and concerned about the safeguarding aspect if medics were not getting access when the families requested it. The same day the duty nurse went in and later a GP – and a GP is scheduled in 2 weeks .

He is off all the dementia medication and he is a lot better. We went to see him 3 days ago and we cried with joy as he recognised us both and called our names out over and over . He was more alert and focused.

But it was a window visit as the home say he is not safe in a wheelchair, so we can’t see him face to face 2 m away . I think this rigidity has now subsided due to being taken off medications and the GP will confirm when she sees him next time.

This is such a blow because he cannot hear or see us very well at the window.  If it just a chair problem to overcome there must be one we can use just to get him out the door? It’s a good job I have a ‘ can do’ attitude as these problems seem insurmountable to some.

Nothing is insurmountable to me and whilst Bob is alive I will fight for him. It is an uphill battle.

What worries me more is how many others don’t have a ‘ me’ to ask questions and check well being and challenge accountability.