Dawn and David’s Story

My husband David was diagnosed with young onset Alzheimer’s disease 6 years ago when he was 56.

When Covid-19 struck David was at a care assessment unit where his needs were to be assessed for possible permanent placement in a care home.

David had been in the home for just over 2 weeks when the home was in lockdown due to the Covid-19 which meant no visits were allowed. As I couldn’t see David all I could do was telephone to see how he was and also speak to him which wasn’t easy as he had difficulty understanding what I was saying.

As the unit wasn’t an actual care home they didn’t have activities or staff in place to keep the residents occupied apart from colouring books and a couple of games. I was worried that David would go downhill even more due to lack of stimulation.

The last time I rang the unit was on a Friday and was told David was ok etc. On the Monday I received a call from them saying that David had stopped walking, eating and drinking and the doctor wasn’t quite sure what was wrong as they couldn’t do a skype assessment as it wasn’t working but they would keep any eye on him. On the Tuesday I rang and was told he was in bed all day as he didn’t feel well and on Wednesday he was a little bit better. On Thursday morning about 6.45am I received a call from an A&E doctor at the hospital to say that David had been admitted and was in a critical condition with possible covid therefore they needed my wishes regarding DNR. I was also told that even though he was having difficulty breathing, they wouldn’t be able to ventilate him and just given oxygen. I was totally devastated. I never expected to get a phone call like that. It was awful that I couldn’t go and be with him and all I could do was either wait for a phone call from the hospital or ring them myself for an update which I didn’t particularly like doing as I knew they were extremely busy. From what I had been told I didn’t expect David to last the night but he did, and over the weekend there was no change. On the Monday morning I received another phone call from a doctor on the covid ward to ask me about palliative care as they didn’t think David would either pull through or if he did what his quality of life would be like. The only time I would be able to see him was near end of life. I didn’t have to make a decision there and then but they would ring me on Wednesday when I had had chance to speak to family. I was so upset at having to make a life or death decision and it made it worse by not being able to actually see him and be with him, to hold his hand and let him know I was there. I couldn’t get my head around the fact that I had to make a decision about something so serious and without actually speaking to a doctor face to face. I hated the fact that David was all alone in hospital and he would be totally confused where he was and see people with masks on.

Having spoken with the family it was decided it may be kinder be to let him go but even though a decision had been made I felt so guilty and kept questioning myself whether it was the right thing to do.

I rang the hospital on Tuesday and was told that David was receiving less oxygen. I couldn’t believe it and kept my fingers crossed he would keep improving.

On the Wednesday I received a phone call from a physiotherapist saying that David wasn’t receiving any oxygen but they would be keeping any eye on him and that he was going to try and get David out of bed and walking and he would give me an update later in the week. I couldn’t believe it. How could someone at death’s door recover so quickly. I was so happy but later I started to feel angry with David ie how could he put me through all this and then be ok. I felt like someone was playing a cruel trick on me. I couldn’t understand why I felt like that but I think it was a case of I had had to deal with the fact that David wouldn’t be with us for much longer and then being told he was going to be ok. It was a very strange feeling and possibly a case of my emotions were in absolute turmoil.

A neighbour of my stepson was a nurse at the hospital and she managed to get a couple photos of David and took him a toy monkey which he cuddled. It was lovely to see him, even though he was ill, I was starting to forget what he looked like! As he came round a bit more I could face time him through the hospital which was brilliant but every time I cried. I don’t think poor David knew what was going on. As soon they got David mobile I had to find a care home who would take him which I did. I took him some clothes to the hospital and an ambulance took him to the home. It really upset me that he had to go on his own to a new strange place. When I came away from the hospital I felt like I was grieving at the fact that David was now well and going into a care home that I didn’t have anything more to sort out.

Luckily at the home David’s bedroom window looked out on to the car park so when we visited we could see him through the window.
On the first visit I was over the moon to be able to see him, even though it was through a window, and I just wanted to hug him. I could see he didn’t understand why I was outside and he became upset. I’ve been to see him a few times and I just so want to be able to go in the home and give him a hug and for him to be feel to be hugged as it’s been so long but also just be with him to either sit or walk round with him and to make him feel he’s not been abandoned.

 

Post script
28th July was our 13th wedding anniversary. I was able to meet David in the garden of his care home and we shared some non-alcoholic beer and wine to celebrate. It was lovely to be together again and, although we couldn’t hug or kiss, it felt like I was there for him at last. Now we are back in lockdown and I don’t know when we’ll be able to meet face to face again. This Covid rollercoaster just seems to go on and on!