I'm realising now that I've been suffering caregiver burnout, along with my own not very well managed serious depression, pretty much since covid hit and I moved back into folks house and gave up my flat, because I was on other side of the city w/o a car, and travelling back and forth via two buses when battling agoraphobia and buses being a panic attack fear for me wasn't feasible, and would only put mum and dad at even more risk of my bringing them covid. So I gave up my flat (which was a lovely little flat, and I loved it, but I was isolated, being so far from family and on the outskirts of the city.
But it was a good thing at the time. My agoraphobia wasn't so bad at the time, so I did the weekly shopping with dad for a while, as he gradually trusted me more and more to chose the products he wanted, and he agreed to stay home to avoid the virus risk. Then eventually he had to stay home nearly all the time after he fell and broke his hip, Halloween 2021.
He did incredibly well for a mid-80s man with a broken hip. Within a week of the break, he'd had a hip replacement, and was back home and able to go up and down stairs to go to bed. But needed to use a zimmer and rollator, and railed against losing any independence at all, needed a lot more of a gentle approach and reassurance as he pushed himself to regain mobility, and he did regain a lot. Never as much as he wanted, of course. He seemed to think he should still be able to do the things he did at 40 years old, and I'd have to remind him how well he was doing for a man his age, let alone a man his age who'd broken his hip! and to let me/my brother do more.
Mum has had diabetes since I was a kid, a bad back for almost as long, and she had major spinal surgery more than a decade ago, where she had a lot of rods and pins inserted into her spine, so she has been classed disabled for a long time. But she'd still do most of their laundry at first, water her houseplants, keep her lists and ask for and accept help at least. But her cognitive decline was gradual- I asked for a dementia assessment years ago, while dad was still around, because we all noticed her short term memory was having issues, and she wasn't as sharp or organised as she used to be. She passed the dementia assessment, but it's become more and more clear that there's a general age related cognitive recline, and that she's not the woman she was. Now, it's almost a blessing, because she's blissfully unaware of her decline in many ways.
But it meant I gradually took on more and more of the day to day household stuff and caring for them as much as possible, and we muddled along. Until dad had the sudden aoertic aneurism in Feb of this year. At least it was a relatively painless and quick death, while still giving us enough time to say goodbye, and we got to say how much we loved each other.
But you guys saw how devastated I was by losing dad, and how hard it hit mum too, after 57 years together. I've been a daddy's girl since childhood, had him wrapped around my finger from a young age, and I knew he'd take a bullet for me.
Mum was too wracked by grief, and her short term memory issues, and bro had no strong feelings on choices, so all of dad's funeral planning fell to me, and I've never planned a funeral before, so I just did the best I could, and we all grieved and tried to adapt to a new routine without him. But I'll admit, most of the time since he passed in Feb, then the funeral March 20th, has been a fog of grief and depression to me. I pulled myself together enough to notify everyone, arrange the funeral, got through the day with the help of my bestie, who came for a couple of days and was a rock the night before, day of, and day after (he lives up North, but is a great support by phone and has never hesitated to come when I've needed him).
After dad passed, my agoraphobia got a lot worse, and self care. I stumbled through the days trying to make sure mum and the pets were cared for, then I would sleep and neglect myself. Brother took over all the outside shopping. While I'd taken over the majority of the housework, mum was still able to toilet, wash and dress herself, and she'd throw her laundry downstairs in a bag and put it in the machine and turn it on, and I'd carry on with drying/hanging out/folding, then she'd put her own things away. I did the rest of the household laundry. She's always been very particular about her routines, her things, and things being done a certain way, and she was still able to do that. The day of dad's funeral is the first time she soiled herself when she wasn't at home, so I had to get my friend to drive me to the house to get a change of clothes/wet wipes/clean pad etc for her, bless her. If I'd realised her continence had slipped that much, I would have packed a change of clothes for her before.
I did flag up with her doc/nurses that she was losing continence more and more, but it was only as the rectal tumour grew that she began having stool in her laundry, and wasn't putting her own intimate clothing in the washing machine herself anymore, that I saw she was beginning to lose some bowel control too, and spotted bright red blood, and some mucus. That's when docs arranged a FIT test to test for blood, but were still saying there could be lots of causes, especially since black, tarry blood is the real "WARNING, COLON CANCER" signal, you know? Said that they'd be running tests, but to try not to panic since it could be polyps, piles, a fissure, anything. She eventually had a colonoscopy, can't remember when that was, but it was a good couple of months before the bout of tests began end of October.
In the meantime, her diabetes started to become a problem, with the early morning hypos, slowly waning appetite. I looked back at the calendar yesterday, and I've been talking with, involved with and working with mum and her diabetes nurse to test her bloods myself, since mum was still doing her own insulin, but stopped taking her own blood sugars, just forgot to test them, but usually was still able to let me know if she felt her blood sugars were dropping, and would eat some sweets or biscuits herself sometimes still, to prevent a full on hypo.
August/Sept/Oct as her appetite dropped more and more, what we thought was grief and depression making her more tired in the morning and not wanting to get out of bed and get up (she always used to be up, dressed and down for breakfast by 8:30/9 before dad passed), and the increasingly severe hypos I was having to worry about and drag her out of in the mornings, it's literally only the last couple of weeks where they cut her insulin from 200ml to 80ml, and she's thankfully not going hypo in the ams anymore, although my hypervigilence and worries haven't fully eased yet.
I've been supervising her insulin since her dose was cut to 180, then 120, then 100, then 80ml, but she was still administering the injections herself, with me sitting and reminding her of the amount for each injection. I was still the only one testing her blood sugars, especially early am, and before bed, hoping to have them high enough before bed that her sugar levels weren't through the floor by 6am.... She still eats at her usual mealtimes, but gradually has been eating less and less of her actual meals, and drastically reduced her sneaky snacking, which is why her insulin was such a high dose for so many years.
It was only last weekend that I finally locked away her insulin after sheer exhaustion meant I fell asleep again after checking her at 6-7am, and she got herself up and gave herself her previous full whack of 200ml. That was my breaking point of sobbing/angry at myself and irrationally at my brother for not magically knowing that he should have fetched me - it's not her fault, or his. I should have locked away her insulin before. But I didn't want to completely take away all of her independence, and change her routines since that confuses and upsets her too, but if I had, I could have prevented that happening. That also meant I lost another nights sleep because I needed to, was testing her bloods all night and all day, because she didn't know whether she'd done her insulin or not, I decided not to give her any and just monitor her bloods, but the numbers tell me she must have, and she would have autopilot given herself 4 times 50 ml, as she'd done for years.
Her diabetes nurse and the nurse who did mum's dementia assessment who has also visited several times have been great, and they're liasing with the district nurse team, and they've been reassuring with me - that I can't do it all alone, that no, I didn't miss anything that could have prevented the cancer, that it's a very difficult situation, the insulin error was understandable and I did the right things in monitoring her and immediately finding a solution to lock away her insulin. But the guilt and lack of sleep, plus grief at how much she's declined even since diagnosis, hit me very hard. It all happening over a weekend was rough too, just tried to get through it until this past Monday, the 4th.
Monday the 4th 8am, the minute her health centre opened, I was on the phone requesting to speak to her diabetes nurse, who called me back later that day, and I also wanted to talk to her doctor asap to discuss her rapidly declining self care skills, appetite, pallor, continence, memory, mental confusion, and needing more professional care for her, and for us as caregivers. I spend Monday and a lot of Tuesday dealing with mum's care; an assessment was lined up for noon Tuesday 5th with at home hospice funding/district nurse assessor who met her two weeks ago, and adult social services on mum's side.
Given what happened over the weekend and my talks with mum's nurses/their convos with district nurse team, that meeting was basically cancelled, but the district nurse assessor came again, and agreed that mum needed more fast tracked care because of her decline, increased personal care needs (I have to shower her now) and something about caregivers assessments to see what other help we all might need, and agreed she's declined fast, and it has all been falling on me, until I was cracking under the pressure and that med error was a final straw for me. The district nurse also checking mum out medically, assessing, listening to me and being reassuring, and promising she'd fast track care, along with chasing the bladder and bowel service for me to get more large pads for mum, to take that task off my shoulders, helped.
Mum, brother and I were pulling together, I was on top of the laundry/personal care, told Sam to take the evening and night off Wednesday night, since his online friends meet on Wednesdays, he needs that support and time himself, and I'd had some solid sleep and felt absolutely fine to manage the pet care/mum's care to get them all dinner, then to bed at 10pm. Plus Wed morning he'd had to go do a load of shopping for the house/us (and been really thoughtful about it too!), then had to push his electric bike and all the shopping home in the rain after the charge ran out, and he'd been developing a cough. can't afford for him to be ill, and he needs rest and support as much as I do! But I was feeling calmer and that things were falling into place.
Today after doing the usual moring routine and helping mum get up, ready and fed, just before 1pm, mum's diabetes nurse called and I updated her, she agreed as long as mum isn't going low, that's the important thing, to let her eat pretty much whatever she wants, high sugars aren't a concern at this point, and the declining appetite means as long as she's willing to eat anything, that's a good thing.
Literally as I hung up with her, the fast track team called and agreed mum is entitled to more care, according to district nurse and their review of her records and reports, and that she's going to arrange for agency help twice daily, and they can offer more help if needed, I only need to call. Great! Hanging tight on that, but I can manage while that's being lined up now I've at least slept and I know more outside help is coming.
Then my cousins called, who helped talk me into accepting carers coming in 2x daily when I broke over the last weekend and were glad to hear I'd got some sleep, and agreed to accept more help in giving mum's personal care, so I can spend more time being her daughter and planning our last Christmas together, instead of run ragged being a support worker/care assistant, and with no time or energy left to leaf through photo albums with her. Brief call, but good, and will speak to them again in a few days. They care for their mum, my mum's sister, so they very much know what I'm going through.
4pm mum's chiropodist came, and I'd prepped a Christmas card, thank you card, and his payment, fortunately. He's looked after her feet for more about 30 years, so she's fond of him, and vice versa.
Then I had a rough call with the triage mental health team, checking up on me and making sure I wasn't going psychotic or anything, since my usual GP is on holiday this week, and I had to speak to a different GP as an emergency bridging thing to make sure I don't crack up again like I did over the weekend, and while I thought that GP appointment had gone okay, I guess she wanted the triage team to assess me rather than waiting for my usual GP to return and assess me on Tuesday 12th as planned. I'm doing the best I can, hopefully they can see that at least.
