Remembering Not To Forget

It’s amazing how quickly things change. At the start of May I went home for a typical and unremarkable weekend. Mum was quiet but seemed happy and although slow and a bit doddery on her feet we walked to the park and threw her ball around. One night the care lady came while we were still eating so I put Mum to bed myself later on. We’d just secured funding for an additional 5 weeks of respite care this year, the first week in January having been a huge success, so felt confident about everyone’s ability to cope with existing arrangements for the foreseeable future.

This week’s visit will be very different; my second since Mum moved into a nursing home. We’ve done our best to update people as things have developed but now feels a good time to reflect on all that has happened and share more fully what’s been going on.

In mid-May Mum went off to respite. Ringing to check that she’d got off OK, Dad mentioned that she had seemed off colour that morning, not speaking (which isn’t unusual) and refusing to eat (which is more unusual). A few days later the home rang to say Mum hadn’t been herself so they’d called the GP out. He had prescribed antibiotics for suspected chest and urinary tract infections.

Next day Mum somehow managed to fall out of bed (how is still a mystery as she usually doesn’t move unless encouraged). No obvious damage done, Mum complained of pain in her hip and was unwilling or unable to weight bear so was sent to A&E for a check up. They gave her a full work up – chest and leg x-ray, ECG, blood tests, bladder ultrasound. Nothing troubling showed up so she was finally discharged late that night.

Next day Mum had to be hoisted from bed to chair as she couldn’t/wouldn’t stand. This has happened before, we’ve had other hospital trips after falls/collapsing incidents where it has taken a lot of encouragement/singing and usually a visit from Ali or I to get her up and moving again. And increasingly often she has had days when it takes a long time to get her up out of a chair or from the car. So we hoped she was just tired after her hospital trip and not feeling well. Sure enough by the end of the week she was back on her feet and seemed back to her usual self so she went home as planned.

Unfortunately next morning Mum was completely non-responsive and the care lady and Dad were unable to get her to move let alone get her up. The ambulance came and took her into hospital. Two courses of IV antibiotics and one oral course (or just under two weeks) later the infection(s) seemed to have cleared and medically Mum was fine. But despite hours of cajoling, singing, bribery and help from big strong physios Mum still couldn’t or wouldn’t stand. She also wouldn’t feed herself, voluntarily take a drink or even move position. There was some hope that it was the lingering effects of the infection which can cause delirium and reduced mental function for several months. But more likely that it was a progression of her Alzheimer’s and just the next phase.

The assessment, when we finally got the necessary people together after a week of asking, was that she needs full time nursing care as opposed to the residential care she’s been having on her respite visits which meant the place she’d been going, familiar to all of us and perfectly located in Wivey, wasn’t an option.

Both fortunately and unfortunately, Mum qualifies for full social services funding. This is great in that we couldn’t afford to pay the private rates (typically £800-950 a week) but meant we were at the mercy of a creaking system in trying to get a placement. Fortunately, the funding did get approved (we were told it wasn’t a certainty, but not what would happen if refused) and despite a very short list of possible nursing home places (few in the area accept social services rates or offer an affordable top up arrangement) we have found a room in a lovely place in Wellington near where Ali and I went to school. As well as having beautiful gardens it’s next to the park and a primary school/nursery so Mum’s two favourite things – flowers and children – are nearby.

So in mid-June, after three and a half weeks in hospital, Mum moved into her new home. And we all started the process of adjusting to this new phase. We always knew the time was likely to come when we wouldn’t be able to look after Mum at home. But we didn’t expect it to be quite yet, or so sudden. After 11 years of at least monthly visits home to help with Mum’s care it’s very strange only visiting her for a few hours at a time and I know it will take Dad a while to get used to being alone in the house. It’s been so strange being at home with all of Mum’s things and knowing that in all likelihood she will never visit the house again and we won’t all sleep under the same roof again. Ali has done an amazing job of making Mum’s new room look like home, taking in various treasured items and pictures. We will miss the bits and pieces that have gone with her but it’s nice to know she won’t be alone. As well as us adjusting, it’s taken Mum a while to settle in but she seems content and the team there are wonderful and are slowly getting to know her. While still not mobile, she is eating and drinking a bit better and everyone tells us what a lovely smile she has.

Sometimes it feels like we have failed Mum by passing over her day to day care to others. But I know we haven’t, we simply aren’t equipped to care for her in this advanced stage of her horrible disease, it’s the best place for Mum to be and as Ali reminded me recently this is what Mum told us to do all those years ago when first diagnosed. It’s hard letting go. But we have to remember that our old Mum wanted us to live our own lives and knew better than most that the time would come when others were better placed than us to care for her. The very kind and caring manager of Mum’s new home told me that their job now is to ensure that we get quality time with Mum, it’s time to pass the hard work on to them and enjoy the time we get to spend with her. So that’s what I am focusing on and what we will do. And when it all gets too much I will just remember Mum, in a rare moment of lucidity, telling Ali and I to “pull yourselves together” as she did when we got upset during one of the hospital visits in June. Wise words from a wise woman.