How Alzheimer's Affected Three Generations

I am however glad, that for a time, we were able to be grandma – daughter – granddaughter
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My grandma was one of those ‘cool’ grandmas, she wore high heels and had her nails painted in bright pinks and reds. I thought she was…trendy. She was always out socialising. As kids we used to joke that we needed to book an appointment to see her – calling in on the way home from school was usually a waste of time!

My grandpa died very suddenly in 2005. He was as strong as an ox and it was a shock to us all. No one more so than my grandma, who was hospitalised and nearly missed his funeral. For the next few years she struggled to get past the shock and her health deteriorated. She began repeating herself or forgetting what you’d told her. Initially we just put it down to old age, everyone forgets stuff right? But it got worse, until eventually my mum took her to the doctors, they tested her and confirmed a diagnosis of dementia – Alzheimer’s.

The progress was slow at first, things no one else would notice. She began forgetting to change her clothes, we’d visit on a Monday and she’d still be wearing the same jumper on the following Thursday. Her clothing started looking baggy and it confirmed our thoughts that she wasn’t eating properly. She was only taking her tablets sporadically and we weren’t sure how good her personal hygiene was. She lived alone and so it was hard to tell what was really going on, even when one of us visited every day.

The deterioration was gradual but perceptible. The biggest problem however, was her awareness of the issues. We tried talking to her about getting meals delivered, but she insisted that there was no need because she still cooked lunch every day. She didn’t, we knew she didn’t, but she still believed she did and therein lay our obstacle. Whenever my mum tried to get her to change her clothes or to do a bit of cleaning for her, she was met with anger and resistance. In fact, trying to speak to Grandma about any of these issues was a minefield and massively upsetting for everyone.

We understood why of course. Whilst Grandma didn’t completely grasp what ‘Alzheimer’s’ meant, she knew something was wrong and she knew she was forgetting things. I imagine that she was scared, but also embarrassed. She was fiercely proud of her independence and any suggestion that she wasn’t wearing clean clothes or cooking herself her meals was insulting. The strain on my mother however, was insurmountable and other than my father and me, she had no support. She had stopped being a daughter and was now a carer. She was the one making the tough decisions, worrying day and night about her missing meals and medication and not knowing what to do for the best.

We decided to focus on the two main issues. Firstly, we ordered ‘meals on wheels’ once a day for lunchtime. This meant that no matter what else she ate or didn’t eat during the day, at lunchtime a hot meal would be delivered to her door and put in her hands. Grandma wasn’t happy about it and arguments were had, but my mum had to put her foot down – she couldn’t continue letting her lose weight. The medication was more difficult to resolve, until we heard of a tablet box that alarmed and had flashing lights. We managed to purchase one off the internet and set it for three times a day. The alarm did not stop until the box was turned upside down, thus releasing the tablets. Grandma called it her spaceship!

We had learnt to pick our battles. So what if she wore the same jumper five days in a row, she was eating again and regularly taking her medication and so the status quo was returned, for a time.

Slowly though, things began to deteriorate again. My grandma accused my mum of stealing all her underwear, but when my mum went into the bedroom it was in the drawers as normal. It seemed she had forgotten where it was and how to look for it. She was getting more cantankerous and hostile, which again we understood. But for my mum, it was unbearable, she was often horrible to her, blaming her for everything and greeting her with “why have you come again?”

My mum’s painstaking care of her, was the only thing keeping her in her own home now and the situation was becomming overwhelming. Late one night, my mum got a call from the pub in my grandma’s village, they said she had wandered in alone and they knew that wasn’t right. Then a neighbour admitted that she often found her out at night and took her home. This was the turning point. Whilst she remained safe we would work as hard as we could to keep her in her own home, but as soon as her safety was in question we would have to look at other options.

The problem was that we couldn’t lock her in every night, if there was a fire she’d be trapped. However the village was rural and if she turned left at the end of her road rather than right, she’d be on a single track with a ditch either side – not ideal for an 84 year old in the dark, in her slippers. The worry this placed on my mum was beyond agonising and the situation had to change.

We found a lovely care home in the village next to ours, with the top floor solely for dementia patients. They have neat little ensuite rooms and entertainment most days. We moved my grandma in and had to buy her bigger trousers from all the weight she gained!! She went out to the local church with them to sing and joined a knitting group, it was by far the best decision we could have made. She transformed from an angry, aggressive women at home all day by herself, to this peaceful and content old lady with new friends.

And my mum…. she was able to go back to being her daughter.

She has been in her care home nearly three years now and has (as may be expected), deteriorated to late stages of Alzheimer’s and is bedridden. She doesn’t know who my mum is anymore, other than a kind lady who visits her, but she recognises my dad! I confuse her, she often thinks I’m a nurse. Making conversation is difficult because she struggles to understand and I’m afraid to say that the woman I knew as my grandma has truly left the building. What remains is a hollow shell, with no memories and therefore no history to relate to.

I am however glad, that for a time, we were able to be grandma – daughter – granddaughter again. Trying to be carer and relative didn’t work for any of us, the balance could not be found. Handing over that care to the professionals, allowed those relationship to be returned for the three of us and was the last gift we shared with her.