Has been a very challenging week and weekend, in every sense of the word.
TRIGGER WARNINGS - medical talk, mental health talk, mortality, SI, and a very long essay to help me process this nightmare. Sharing is helping me navigate this.
Mum's health and general health/abilities are declining much faster than I expected even just from when we got the diagnosis and prognosis in early Nov. They said "months, not years", but I'd hoped she may see Spring. Planned to make as good a Christmas for us as I could, and planning that gave me something positive to work towards. Mum knows it's almost certainly her last Christmas, and it's our first without dad. Now, I'm worried about whether she'll make it to Christmas... and that breaks my heart all over again and has me emotionally rocky and leaning hard on professionals and friends/family to help talk me down when my mental health is spiralling. We'd all been in a fog of grief and just struggling to get by day to day since losing dad in Feb, and mum's cancer symptoms only became obvious as she lost her physical and emotional functioning, and needed me to help her with her personal laundry etc and her having accidents, so I spotted blood and got her GP involved.
Trouble is, mum hadn't even mentioned she was passing blood with her bowel movements, and wasn't alarmed by it. She was discreet in binning pads and would put soiled laundry straight into the machine. She's only lost that since dad passed. Didn't seem aware or concerned even once I saw blood and asked her about it, or as the docs started doing tests. But the accidents and amount of blood has increased a lot since investigations began, and any other cancer symptoms were masked by short term memory problems, and the natural grief after losing her husband of 57 years and being 80 and frail herself.
I haven't confirmed this with her team yet, but it appears to be a fast spreading and aggressive cancer.
It had got very advanced and spread throughout her liver by the time we saw blood in her stool and the tests began. So it's like we've woken up from a fog of daily grief and trying to navigate new routines, then had this devastating news about mum, at the same time her personal care needs have really increased and her mental sharpness has worstened.
Means we're all adjusting and getting into new routines in caring and housework duties. Fortunately bro and I are working together. But he has high functioning apspergers so changes in routine and doing chores without direction (or with too many requests at once) can overwhelm him, so I have to take charge of a lot of the medical and health stuff, and personal care, which means helping mum bathe, dress and get downstairs for breakfast and insulin etc. It's natural for me to take that role, easier for all of us for mum and daughter to help her with that intimate care, and I have years of nursing home and support worker experience, so helping people with personal care isn't a problem to me at all. She's accepting it well, and grateful, but has also mentioned she knows she needs more help than she used to, and needs some gentle prompting and reassurance as she gets used to accepting that sort of help from me.
My bro is great; he does all the outside shopping, helps without complaint and is very willing and cares, and routinely takes charge of gardening, rubbish, and putting out the recycling and stuff. I just have to remember our neurological differences in both emotions and communication. Without bossing him around either, which can be a difficult balance.
I got some bad news Friday that another waiting list I'm on is at least four months long, and I don't think we have four months, I really don't. I also feel guilt for taking up so much of my GPs time, and whether the district nurses/Adult social services/palliative care services/citizen's advice and mum's docs and nurses will think I'm failing and not taking care of mum well enough. I don't feel deserving of the help, that I'm wasting resources that I don't deserve, while feeling like I'm failing mum, and knowing I have to fight through and take care of myself so I can care for mum.
GP has strongly insisted that it's the depression telling me that, that I'm doing so well under the circumstances, and that no one could ask more, even though he knows I don't believe that on an emotional level right now, but that he wants me to remember that. And not to feel guilty about taking up their time because that's exactly what they're there for, that they truly want to give us the help we need. I just know and completely understand the strain the NHS and their wonderful staff are under, and that they're doing the very best they can while underfunded and overwhelmed, so waiting lists for counselling and things like that are natural, and he wants to help me get through this rough period, while we both line up care for my mental health and managing once mum does pass. I self referred for the counselling service and had an assessment, got on the waiting list, and GP also referred me to adult social services, who are also offering further support for my brother and a different agency for me. GP has been great at referring me to where he thinks others can help me get through this, and potentially have a life after this, and communicating with them, and the social worker was great too. Talking to me, my GP, my brother, and with mum's care team.
I need to focus on the day to day and changing routines, try to stay calm, talk more to friends and get out for walks with my dog, for both our sakes! And be patient with myself, and trust the professionals on mum's team and the ones on mine to line up further help that should hopefully be fully in place by the time mum passes. I'm slowly getting better and more organised at prioritising what needs doing first, and what can wait.
But it's never enough, no matter what I do, and I can't give myself a break. So awake all night worrying, then dog always gets me up between 6-7am, because she knows her breakfast is at 7!
But that's fine and works well for our routine. I check mum's blood sugar and let her sleep in if it's okay, or give her what she needs if her bloods are low and monitor her over the next hours until she's ready to get up and have breakfast and insulin. I have to lock her insulin and insulin pen away now, as of today. She does it under my supervision and direction now, because her doseage has changed so much, and her short term memory can't keep up. She's still mentally used to her old routines, where she did it herself and had a rigid morning routine for years. But the tiredness we thought was from grief and depression after losing dad, and not wanting to get up in the mornings because he wasn't there anymore, was likely the cancer. Making her tired, and losing her appetite so she doesn't eat as much of her usual meals, and doesn't do all the naughty snacking diabetics shouldn't do throughout the day, the way she used to. She was still doing her own insulin injections, but stopped testing her bloods herself so I'd taken over blood testing. Sadly she seems to be losing the awareness of when her sugar levels are getting low and needs to eat something, and hasn't been using the alert button system she carries that alerts us when she needs help. It worked well with dad, but mum tries to manage herself and doesn't ring for help. Hopefully she'll get used to using that.
So the new lower appetite meant her insulin dose was way too high, and sending her into hypoglycemia early every morning for a while. Hypos are horrible, and v.dangerous if not treated in time. I'd help her to bed at 10pm with a high/medium level, one that used to work before, then find her at 6:30am-7am with increasingly low sugar levels. A couple of times she was so low it was a close call whether I could get her sugar up myself, or would need to call an ambulance. Fortunately, I could get her to drink some orange juice then soon after as she became more consciously aware, a jam sandwich, so I was able to bring them back up to a safe level, but hypos are also horrible for the patient to go through. The brain is almost shutting down by that point, and the last stage is a coma then death if not stopped in time. So even once sugars rise again to a safer level, patient is exhausted and wiped out from going so low, so she needed to sleep longer and later in the day as her sugar levels stabilised and she returned to "normal". But "normal" for her has gone downhill, and she knows it.
Have been working with the diabetes nurse for a while, and especially the last couple of weeks mum's insulin dose has been cut by more than half over the last couple of weeks because it was way too high, and sending her blood levels low.
we've had some good mornings since cutting her insulin dose, where she's at a fine safe level in the morning, or only beginning to drop a bit low, and I can give her some carbs& sugar to get her up just enough to stay at a safe level until she comes downstairs for breakfast and insulin. Much less stressful for me - I was struggling to sleep for worrying, and having to drag her out of a hypo every morning! She can happily sleep longer in the morning with only minimal disturbance while I test her sugar level, then let her sleep longer since it's safe. Then she choses when she wants to get up, showered and dressed, and she's getting used to me helping her with that, plus not so wiped out since she wasn't hypo those mornings.
Have been in constant communication with diabetes nurses, district nursing team, the hospital cancer team, citizen's advice about her benefits, grants and what help they can give a patient in palliative care, at home but needing more outside help now. and constantly changing circumstances, and one caregiver with aspergers, and me with my mental health issues, and how we're coping with those things while also being daily caregivers and going through this awful emotional time.
My GP, thank all the gods, is wonderful, and has been an amazing support, and referring me to other services, talking to them, checking in on me and being really proactive and compassionate. I'm lucky to have found another great one, and he knew dad too, and expressed genuine condolences to me and said he remembered my dad and what a great man he was when I first notified the surgery that dad had passed.
But on Friday the news about another four month waiting list plunged my mood and hope, combined with feeling heartbroken at how fast mum was declining, so my depression was torturing me that I'm failing and need to do more, better, now! Plus that person doing the phone assessment on me who told me about the waiting list asked for permission to share my info with my GP which I gave, and she called him and I think told him she was worried I might harm myself, because he called me within an hour. He knows I don't want to, and have no immediate plans, won't do anything while mum needs me, and that I know who I'll call if I have any thoughts like that, or if I'm reaching a crisis point. But I felt bad again that he'd had to deal with yet another professional calling him and making him call me. He reassured of course, but it was a brief call for him to let me know she'd called, and that he'd email the therapy place and see if there's anything else they can do in the meantime, and made sure I wasn't in immediate danger and he's there if I need.
But it's been a very hard weekend for me. Have broken down sobbing several times daily, which upsets my dog, and I have to try to keep it together to not upset mum and brother, but mum and I had a cry together today, and reminised about dad. I'm so tired, desperate to go have a shower and then slip into clean sheets (being clean and climbing into a clean warm bed is one of the best feelings in the world!) and hopefully sleep like a log. I need it. Friends have been great, but gotta admit I called the crisis team at 3am on Saturday because I was spiralling with worry and pain and terrified I'd end up in a psych hopsital and not be here when I absolutely have to be. It reached a pretty bad point. But at least I called for help, and I got through it. Got a lot done today, mum is settled and at a safe sugar level in a clean bed, Sam is putting out the rubbish and recycling - we're doing our best. The main thing is that we all love each other, and want to help each other get through this.
I don't believe we were built to process the trauma of losing loved ones
