26th March…I’ve been dreading this day, this anniversary of a year since I last saw my father-in-law, the day he was moved forcibly into a care home.

He’d been in hospital for a month and, as it became more and more apparent that he couldn’t go home and also that the first coronavirus wave was imminent, the hospital made the decision that anyone who could be classed as “medically fit” to he discharged would be and those who couldn’t go home, would be heading for a care home. One that had vacancies, one in which we had no say, so great was the need for beds to be released.

We don’t blame the hospital, no one could have predicted how severe the first (and subsequent) wave (s) were, how many people would die, how within communities heroes would emerge, how grateful we’d feel for key workers and nhs staff who gave their all and more.

And so, back to 26th March 2020, we knew he’d be arriving at the home around lunchtime so, we made an “essential journey” as we’d entered lockdown a couple of days before, we headed to FILs house to pack up a few bits and pieces from a lifetime of memories, what to choose as dementia was also setting in for him?

A wedding canvas that we hoped he’d recognise, a much loved present in April 2019, we hoped he’d still be able to gain pleasure from it. Similarly, pictures of T and D, wordsearch books and pens (gosh, my FIL loved his pens, kept them next to his puzzle books, lids on, just so), his bedroom tv, a radio, a couple of plants and changes of clothes. Not knowing how long he’d be in there, we packed enough for a few weeks.

We arrived at the care home and Hubbie instantly recognised it as being on the site where the wedding reception for his parents had been held (not because he’d been there but because he’d been told the location), we hoped it was a good omen.

Waiting to take up his belongings, we were told that only one person could go up and see my FIL and do the handover of belongings, I went up, something that has stayed with me, my last images of my FIL, recognising me and holding my hand, listening as I told him that we hoped he’d understood that, at the moment, he couldn’t go home, he needed to be in the home to get a bit stronger and we would see him soon. I then got called away to do an inventory of his belongings and I said I wouldn’t be long, that was the last time I saw him, his eyes showing the cataracts were returning, his pupils reflecting the sunlight as they were a blue/grey colour.

I started the inventory with a care worker, she marking belongings with a sharpie, us talking behind masks and wearing gloves as she commented on what we’d brought in and admiring the wedding canvas, that of my Inlaw’s wedding day.

We didn’t get too far into the task when another woman came in, no introductions, no pleasantries but a loud “you need to go, now!” I wasn’t able to say goodbye to either my FIL or finish the inventory, made to feel like a child who’d done something very wrong as I was escorted downstairs.

And that was that, we were emotional leaving, wondering when we’d see him again, phonecalls with him weren’t an option as he was profoundly deaf, Skype etc wasn’t possible due to the dementia – which allowed my FIL one lucid hour or so a day – and his deafness.

The next few weeks were a blur, home-schooling started and trying to find out how my FIL was, it wasn’t easy.

We found out that he’d been moved within the home a few days after admission as “he wasn’t a permanent resident”, not actually helpful for settling him in, then moved again. This time being told that he was now permanent. Three moves within two weeks can’t have helped him to settle into a very unfamiliar place.

It was impossible to get a clear picture of how he was, we were told by two different people within a week that coronavirus was “everywhere” and then that it wasn’t.

Shockingly we found out that even though he wasn’t classed as “permanent” at the time, the care home changed his doctors and also, without any consultation with Hubbie, asked the doctor to put him on medication that prevented any “inappropriate behaviour” and – according to side effects – made him drowsy and no doubt, docile. We knew from seeing my FIL in hospital and at home previously that there was that one lucid hour, the rest of the time he slept, his body needing that sleep as his inner time clock got ever slower. The care home justified their actions by saying that he was spending all day and night walking around, making a nuisance of himself, staring at people…well, he’d needed a walking frame at home and in hospital, struggled to stand and his body simply did not having the energy to do that and his cataracts meant he might stare when first woken as his eyes tried to focus.

A “power of attorney” seemed to make no difference to the care home, we were told nothing, I’d try and phone every other day, calls would be put through and either just ring or be put down.

We emailed the care home and their head office with our concerns, this resulted in a “why did you do that?” call from the same woman who’d been so aggressive on the first day. We were promised a weekly update, nothing came. We asked if we could see him through a window, desperate to know how he was, the answer was “no”, we asked social services if they could help, they sympathised and tried to get updates too, the phones were put down on them too.

Whilst we were very aware of the challenges facing care homes and the extreme circumstances, it doesn’t change the need for some compassion, we were under circumstances where we had no contact with someone who’d been used to me going into hospital nearly every day to see him, who’d had frequent visits from us when at home, who’s profound deafness and increasing dementia meant that he couldn’t contact us directly and nor could we him.

We barely slept, waking up every morning with my FIL in our minds, wondering how he was.

The situation wasn’t right. We asked social services if he could be moved to a nursing home, or go home once care was in place…anywhere where we’d have contact or better communication, the answer was “no” as lockdown was in place.

We looked up previous CQC reports on the care home, they weren’t positive, raising concerns that possessions were going missing, that dementia patients weren’t being adequately cared for, that communication wasn’t good.

And then on our wedding anniversary, nine weeks after my FIL entered the care home, he died.

There had been a fall the previous evening, we found out later and they’d checked him over and put him back into his bedside chair. Sometime during the early hours, a decision was made to put him back to bed (he was never comfortable in bed, the pains in his legs meant he preferred to sleep in a chair) and someone we don’t know who, observed him taking a last breath, following which a doctor was called.

That’s all we knew. No idea of timing, in fact the time of death told to the coroner was stated as being after the phone call to his family! It was noted on the coroners report that there was a timing discrepancy and that he was being treated as a Covid case as the care homes had no means of testing in place.

When we went to collect his belongings a few days later, there were items missing:

The remote control for his tv, a dementia clock, his top false teeth (goodness knows were they were), his favourite cushion and two blankets I’d crocheted for him that alternated on his bed at home.

We were offered no condolences and when we queried the time of death, were told that the records had already been archived….. something which didn’t sit right.

The post mortem revealed the cause of death and that he’d passed away most likely asleep, also he’d lost nearly a stone in weight from having been weighed before he was discharged from the hospital.

From then on, we had a funeral to arrange within strict Covid guidelines, it was live streamed out to those who’d maybe wanted to come but couldn’t as shielding and T and D each wrote messages for their grandad on wreaths I crocheted.

At times, as we’d had no contact with my FIL and the care home were no uncommunicative, I’d wonder if maybe he was still alive, that someone else had passed away and we’d been told incorrectly. Strange the way thoughts can turn in the wee small hours.

I blame myself for not acting after I was ordered out of the ward on his first day, I followed that “care” worker back to reception feeling that things weren’t right, that I shouldn’t have been spoken to like that, that if she spoke like that to residents relations, how would she be speaking to residents?

Talking to people in the last few months, unfortunately we’re not the only families to have gone through these experiences with the same home. It’s no comfort but I suppose at least my FIL wasn’t singled out for this treatment, it’s wrong. End of life and elderly care should be exactly that…care.

One year on, I hope somewhere my FIL is reunited with my MIL, that somehow he knows we tried to do our best by him, that we miss him and that we’ll be reporting that home where “care” might appear in its description but it didn’t really seem to.

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