Two And A Half Years On

Obligatory recap:
When my mum first came here - at the end of June 2018 - after a nine and a half week stay in hospital I very much thought she was coming here to die. In all honesty we hadn't been at all convinced she would even get out of hospital.

Before her stroke my mum, then 73, was getting visibly frailer. She was greyer, more wrinkled, shrinking. The day before I had actually sobbed on my daughter's shoulder that I didn't think we'd have her for much longer. 

That said, she was still living independently, driving considerable distances although she spent more of her time at her partner's house than her own flat for sheer convenience.

Her stroke was described as 'severe'. There's no classification system like stages of cancer that allow you to understand where your loved one is on a broad spectrum that ranges from quick recovery at one end to things such as permanent paralysis, coma and death at the other.

My mum went from moderately healthy and active (type 2 diabetes and advancing age) to completely dependent. And it was a massive shock to us.

Her father had suffered a large stroke when I was a kid. We all agreed his quality of life had been crap yet somehow he lived another 16 or so years. Mum's situation was so much worse it was no wonder we expected her to go imminently.

Anyway, that first year she was home I felt like I was on tenterhooks. Every time she nodded off in front of the TV I'd check she was still breathing. If I woke up before her I'd be terrified she'd died in the night. NOT, I might add, because I am *scared* of her dying so much as it's a new experience I know will be very unpleasant.

I know I've blogged about all this before so I've tried to be concise.

We've recently passed the 2.5 years mark since her stroke and we're also just past the 2 years 4 months since she came to live out her days in the care of her only child - muggins here. And the pressing thing is... how wrong I was back then.

Not only did was she clearly NOT on her last legs, as evidenced by her continued survival, but - and this is the bit I'm especially struggling with - SHE WASN'T ACTUALLY THAT BAD.

Badness is a thing you can only appreciate by contrast. Mid 2018 was BAD. I did not make a bad call in declaring it bad. It was absolutely the most horrific experience... until you experience WORSE.

Worse is decidedly where we are now and I have an uncomfortable awareness that further degrees of badness are both possible and probable.

When my mum first came here she was so catastrophically not the person she had been that it was difficult to see the blessings. With hindsight, and loss, they're clearer. That's where I'm at now - realising how much more of her we've lost, especially since what was probably another big stroke right at the start of lockdown.

Memory - she remembered lots of past things although she had an unfortunate mental block on her partner's name.
Her memory is far worse now. She blanks lots of things, and far more names. She rarely reminisces.

Personality - back then she was still pretty much herself.
Now her principal remaining characteristic is a stubborn streak a mile wide.

Intelligence - my mum's never had an IQ test and her parents made her leave school at 16 but she's a seriously smart lady. There's something kind of hilarious about a stroke survivor who can't remember the name of her partner but can spell obscure words, correct grammar and yell abuse at someone misusing French on TV.
Some of it's still in there but we see less and less of it. She still uses some rather impressive words at times.

Speech - we adjusted to the new sound of her voice quite slowly.
She just passed her 76th birthday (whodathunkit?!) and she had three phone calls - each person said how good her speech was... yeah, it's not like that real world. Her speech is very difficult to understand now, even though I'm with her full-time I struggle. I've started her on drink thickener too which is indicative of deterioration. Gotta try to persuade our not-so-with-it GP to put it on her prescription next.

Mobility - it didn't bother me seeing my mum using a walking frame. I was all in favour for the stability, as was she. The hospital physios had wanted her to try for sticks but my mum has ALWAYS been pro-frame. She first used one in her 50s when she suffered a broken ankle & DVT. Safety was always a higher priority to her than appearances. She would walk to the loo on her own... from the living room. She would get up to the loo on her own in the night.
She can't get up from a chair without assistance now, let alone out of bed. It must be a good year and a half since she went to the loo on her own and forget walking the length of the house! These days she never moves anywhere without at least one person HANDS ON.

She used to come and sit in the living room to watch TV although it drove me nuts that I was expected to watch endless Midsummer Murders repeats when I don't even enjoy watching TV; now she hardly leaves her room... which at least means I can get stuff done from time to time. She sleeps a LOT more.

Old age is not beautiful. It is grim.

Day Sixty...I think?

It has been eight and a half weeks since my mum was taken into hospital following a severe stroke affecting both hemispheres of her brain.

My mum is doing okay and a couple of days ago we had a home assessment to see what my mum's needs will be...that went really well as the house was considered very suitable and they think mum can come home ahead of the ballpark "early July" we were previously told. In fact, it might be at the end of next week!

On the downside we're not getting a lot of support. The home physiotherapy service has already notified us there's likely to be a very long wait and, despite my mum only being able to walk very short distances with a frame and me not driving, she hasn't even been deemed in need of a wheelchair! Bloody ridiculous IMHO.

My cancer scare may yet turn out to be nothing (please keep everything crossed for me!) as my smear test came back normal. No idea what on earth it could be but personally I'm hoping for it to be something menopause related. Yes, I'm 'only' 40 but it's been a very real possibility since surgery when I was 29. The colposcopy is booked for the same day my mum's big meeting to arrange her discharge is scheduled. 

So that's the good(ish) news. On the more difficult side we have the fact I left my job almost a week ago. Unscheduled. I had given notice but a change of computer system and being expected to learn all these new procedures for the sake of a handful more shifts got me stressed out of my gourd until I felt I had no choice but to walk out.

It wasn't bad timing either as the next day my mum had a fall in the hospital and has been really shaken and upset ever since. She is TERRIFIED they'll find a reason she can't come home. It has been a great relief to know I can be there every day to support her.

Then there's the thing where my dad, who is my next door neighbour and my mum's ex partner (by about 14 years at this point), got mortally offended that he "wasn't invited*" to the home assessment mentioned before that he's now not talking to me and hasn't been back to visit my mum. Absolutely pathetic! Unfortunately, the home assessment was nothing to do with him, not to mention that my mum didn't want him there and neither did I...also, he didn't help me prepare for it and actually got in my way quite a lot.

Not that he has to help me as an adult or my mum as his ex the sudden change of heart has made things a good bit more difficult. I kind of hope it's just that the stress of the whole situation has got to him and he'll come around but he has a loooong track record of this sh*t so I won't hold my breath.

*Incidentally, he has never invited me over to his house (assuming we can exclude him asking me to check his emails and the like) and that's INCLUDING the 20 years we lived in Somerset. All the times I visited it was me asking if we could come up.

So yeah, that's where we're at. My mum has times when she wishes she hadn't survived but as someone I know went through that just last week - he mother passed just 2 days after a stroke - I am immensely grateful my mum is still with me and with as much of her abilities and personality intact as she has. We could have lost her in more ways than just by death.

Not gonna lie though, this is by far the most stressful experience of my life...I can only imagine how much worse it must be for my mum.

UPDATE
The colposcopy was fine - no idea what was causing the severe, heavy, prolonged, non-menstrual bleeding but it may have been stress related as it turned out one of my daughters was having the exact same thing!

Sour Apples

It has been quite a while since I last blogged and I apologise for coming back on a sour note.

Today I am feeling...resentful.

My sort of step dad is going into hospital today for surgery tomorrow due to suspected bowel cancer. He's a wonderful bloke and I'm very concerned for him - yet cautiously optomistic as, so far, all the tests have come back clear. My mum has been with him since the alarm bells sounded (they don't live together, hence the "sort of") and I don't resent the fact he's getting the care and support he needs. Not at all. I'm glad she's come through for him. Nuturing isn't in her nature.

Meanwhile, my dad has been expressing concern for his on/off girlfriend who has recently been diagnosed with terminal cancer of the mother. I don't like the sound of the mother in the slightest but I sympathise with what her daughter is going through, and will go through in the coming months.

So what is it that I resent? I resent that when I was going through my last cancer scare 4 years ago my mum didn't come and hold MY hand through all the appointments... Not, I suppose, that I really would've wanted her there but I don't think it ever occurred to her that I might need support.

I don't mean to sound like a stroppy adolescent but I've never felt loved or cared for by my parents. I'm an independent minded woman because I've had to be. I learned early in life that being sick or injured wouldn't make any difference. If my kid had been hit by a car at age 7 I'd have been beside myself with worry; I'd have cried and held my child for hours and I'm not exactly Ms Maternal myself. That's not how it was when I was hit by a car...

My ex left me just before my first cancer scare when I was 20. He was the only person I'd ever really believed cared about me but as I lay in hospital, frightened and alone after emergency surgery at 15 weeks pregnant with our second child, he told me on the phone he couldn't be bothered to visit me and bring me in a nightie. My parents were over a hundred miles away.

So, four years ago, I'd found another lump. My mum was taking me and my kids on holiday and I found the mass just hours before we were due to depart. I told my mum straight away and her reaction was to carry on regardless: a week's delay in going to a doctor wouldn't make any difference...after all, it had been okay last time! I agreed, partly cos I knew she'd be furious if I insisted on staying behind.

It WAS okay. Perhaps they were worried about me and didn't show it so as not to frighten me more than I already was... But ultimately I don't believe that.

I don't want to be needy and greedy and selfish but I wish so badly that I had someone I KNEW loved me, knew there was someone who'd be there at the drop of a hat to hold me and tell me everything would be all right. It frightens me that instead this searing loneliness may be all I'll ever know.

I want my step dad to be okay. I don't want to feel this way. I want to feel like a 33 year old independent woman and not like a lost and lonely child...