Losing a Parent: Slowly

My father died in 2011 and his death crushed me. I loved him with all my heart. He was a kind and loving man, both a gentleman and a gentle man.

I never heard him say a mean word, to me, my sister or our mother. And they loved each other dearly. They were married for over 40 years, and were happy together until the day he died, surrounded by the people that loved him the most. He was 61.

After he died, my mother started to become toxic. She hated the world and everyone in it, including my sister and I. I tried my best with her, to try to soften some of her worst attitudes and behaviours, and persisted in a relationship with her for 2 years after my dad's death.

However, things came to a head one night in 2013, where she said things that I haven't quite forgiven her for to this day, and I hung up the phone on her.

I didn't speak to her again for over 11 years.

Just over a year ago, in early November 2024, my sister got in touch with me. She'd been keeping in intermittent contact with mum over the years, but fully understood and supported my decision to cut off contact with her all those years ago.

My sister told me that mum wasn't great. She'd been forgetting things frequently and as a result had been referred to "the memory clinic" by her GP.

I agonised over the decision to get back in contact with her, and in the end decided I'd feel better with myself if I did. And if it was dementia of some sort, then I'd be better visiting her before the disease progressed too far. So I got in contact with her, and to my surprise she was her old self again, the woman she was before Dad died. Happy, laughing, joking, it was like having my old mother back again.

To cut a long story short, involving many Doctor's appointments, scans, blood tests and a lot of work with Social Workers and community carers, earlier this year she was diagnosed with Frontal Variant Alzheimer’s Disease. She was 71 when she started showing symptoms.

The survival rates for her condition are 6-8 years from onset, which means she'll probably have about 7yrs left at the outside as it stands today.

This initially presented as her asking the same questions a few times when we went to visit, but otherwise she seemed pretty lucid on a moment-to-moment basis. But over the past 6 months, and in the last month in particular, her symptoms have become begun accelerating.

Now, she'll ask the same question every 30-60 seconds, not remembering she asked it less than a minute ago, constantly searching for her bank card (held by my sister for safe-keeping) or bus pass, thinking they've been stolen.

A couple of weeks ago she was found in the middle of the street at 12:30am by a neighbour, who luckily was up at that time and saw her and brought her back in again, and texted my sister to let her know. A few days later she asked some random man on the street if he'd come into her house and fix her TV as it wouldn't switch on for her.

Then on Thursday morning my sister got a call from the community carers we'd arranged earlier this year. They call in to give her her meds twice a day in the morning and evening, and also a lunchtime call to check in on her that she's ok.

My sister answered the call and they asked her "Where's your mum?"

She was missing.

I was working, so my wife who was off work that day went to my mum's house and met my sister there, and sure enough she wasn't there. Front door was unlocked, lights were on in the house, but no mother.

Panic was starting to set in, and they were just about to call the Police to report her as a missing vulnerable person when my sister got another call.

She'd been found 8 miles away in the reception of Belfast City Hospital's Cancer Unit.

She'd had cancer 30 years ago, but has been clear of it ever since. But she remembered how to get there, as she would have had to get 2 different buses to turn up at reception. She'd went there with the intention of speaking to her cancer Doctor (who is probably retired or dead by now) about getting her back scanned as she was having pains in it (something she would obviously have to arrange through her GP, and not at the Cancer Unit), or, as the story she told my sister went "I did it because I wanted to prove I was still independent". A course of action that proved she was anything but.

To make matter worse, she had gone there with literally thousands of pounds in cash in her bag. I'm a fairly healthy 50yr old man and I wouldn't even dare doing that...

So my wife drove my sister up there and they got her picked up and brought her back home. But it was too much. She'd now progressed to the stage where she was wandering off too often and couldn't be relied on or trusted to stay at home, where she was safe and comfortable.

Well, I say comfortable, but her condition had deteriorated to the point where she wasn't looking after herself. She'd let her personal hygiene lapse a long time ago, her heating was broken, her roof was leaking, and she had started seeing "people" in her back garden "trying to steal her tables and chairs". Her back garden is inaccessible, as it's wildly overgrown and isn't feasible to get out there.

She is also a massive hoarder. Just like on the TV show, she was literally that bad. Piles of clothes lying around her living room, her kitchen counters were FILLED with cans, old cooking equipment, random shit she picked up over the years. Literally every surface was piled high with something.

Now, don't get me wrong, we'd asked her countless times, offered to do it for her, but she point-blank refused to let us touch anything. Any time we suggested cleaning things up, or fixing something, she'd get angry and tell us we were treating her "like a child, and I'm an adult and I'll decide if I want them done or not"

Her garden, front or back, her kitchen, living room, bathroom and all her bedrooms upstairs. All unusable. Her bedrooms are piled with junk, and she'd been "sleeping" on the sofa in the living room for years. We'd offered to get a bed put in downstairs for her, but this was yet another thing she refused to let us do for her. In reality she was maybe getting about 2-3 hours of sleep per night doing this, which I'm sure only accelerated the mental issues.

So, after this last incident, which had us all worried sick, we had to make the decision we were hoping we wouldn't have to make this soon. We knew it would come eventually, but we were hoping it would come in maybe in a year or two. But sadly we had to arrange to have her put into a care facility where she can have 24/7 care.

She had always been adamant that she wanted to die in her own home, which might have happened after she'd left her oven on for hours one day, and another time burnt a kettle on her stove after leaving that on there for hours. But after her disappearance we couldn't leave her alone, knowing that she could have been gone again the next day, or 5 minutes after we left her by herself.

So later that day, my sister was able, via my mother's Social Worker, to find a place for her. Elderly care homes in Northern Ireland are nearly always running at capacity, so to get a place available so rapidly (given it was an emergency) was incredible. My sister and I went to have a look at the place, meet the staff, and decide if it was somewhere we'd want her to live out the rest of her days.

And the place, and the staff there all seem really nice. It's expensive, but we know she'll be safe, secure and well looked after, surrounded by people who are there to look after her day and night. She'll have 3 full meals a day, sleep in a proper bed, have company at all hours, and can watch all the TV she wants, all things she was living without by the end of her time at home.

She wasn't able to be placed immediately that night, but would be able to go the following morning after 11am, so she stayed with us that night. After speaking to her Social Worker, my sister and I were advised not to tell her what was happening.

The following morning, dreading what was to come, my sister called up and we got her into my sister's car with the notion that she had an appointment to go see her Social Worker. So off we went, got to the facility with my mum voicing suspicions when we went in. It wasn't until she was inside the place, speaking to the care home manager, that she finally twigged and asked us the question I was dreading, but knew was coming.

"Is this a care home?"

It was at this point we had to break the truth to her. She'd become a danger to herself, and was living in squalor that she completely refused to let us help her with, in an effort to make her life more comfortable, and as a result of her actions the day before, we were out of options.

"What actions?"
"You disappeared yesterday morning mum, and we didn't know where you were. We were just about to call the Police to report you as a missing vulnerable adult when we got the call from the hospital to tell us where you were"
"I wasn't in Belfast, I haven't been in Belfast for years"

Yeah, she didn't even remember disappearing 24 hours previously.

In addition to that, I couldn't have her move in with me, as my wife and I both work full time and couldn't be there for her 24/7, and my sister lives in a small one bedroom flat with her partner and doesn't have the room.

This was the only and best option available.

We eventually got her settled in, and one of the first things the staff did for her was get her showered and cleaned up. We got all the new clothes we'd bought for her sorted out into her drawers and wardrobes in the room, and the forms filled in letting the home know what her preferences, likes and dislikes are.

By the time we left she'd had her lunch, and had started chatting to the residents there, including getting flirted with by one guy, more than once...

I don't want a new dad, thanks mum.

But even though I know it's the best thing for her, I keep replaying that moment she asked if it was a care home over and over in my mind. I feel guilty that we had to do it, but I know we tried for the past year to improve her living conditions, just to be met by a short angry brick wall every time.

I also feel guilty, because she kept asking us "Is this permanent?", and we had to basically lie to her, and tell her that it was only until we get her house fixed up and made liveable again. It will take months of time, and thousands of pounds to fix that house up. The cost isn't an issue frankly, but with her rate of degeneration over the past few weeks, by the time it is in a liveable state she won't be in any condition to live by herself again. Hell, she's not in any condition to live by herself right now, and in hindsight probably hasn't been for a few months now.

She's still seemingly lucid on a moment to moment basis, but spend any more than 5 minutes with her and her memory issues become very apparent. It seems to be as though she has now lost the ability to form any new memories.

So after spending nearly a dozen years with her extricated from my life for my own mental health reasons, at least I got about a year of her old self back again. The mother who raised me, who my dad loved and cherished, and who disappeared after his death.

She's still there, but it's a living echo of her, the woman she once was: The wife, the mother, the daughter and sister.

The woman she'll never be again.