I wrote this a while back, returning only now to update it. Not quite getting round to it, like what happens in life when you’re busy. Like today, how I’ve spent the morning cleaning the windows and letting in that beautiful spring day, letting in that light that we hadn’t noticed we’d missed. Anyway, I’ve got the permission I needed so I’ll share our story:
I spent all day yesterday in bed. Certainly not how I’d planned to spend the day.
It just kind of makes me grateful for each day. We never know what is round the corner do we?
A number of years ago my husband went off for a bike ride, like he does and not long after he left we got a call to say he’s ok but he’d come off his bike and the paramedics were with him.
I can’t tell you what that call was like. Things rushing through my mind not quite knowing what to attend to first. Not knowing how seriously he was injured, despite the reassurances on the phone. Mind wandering off to intensive care, tubes and theatre. An unexpected, unplanned event, like when I found Dad on the floor…anyway back to my husband…
The children were at church with their Grandparents so my dilemma of not quite knowing whether I should collect them first, tell his parents what had happened or just go straight to the scene of the accident. A horrible time.
Despite the shock he was fine, a kind passer by stopped to sit with him by the side of the road, they called the paramedics, stayed with him until they arrived. All fine, ‘just’ a fractured collar bone – a typical cyclists injury we discovered later and luckily no head injury, saved by the now damaged cycling helmet. Yes we’ve got a new one now.
After we got him home from hospital we talked about the what ifs. We’d encountered the very real possibility of him having a head injury and being unable to give informed consent. Here’s a link to more about capacity to give consent. consent.https://www.nhs.uk/conditions/consent-to-treatment/capacity/
From my Nursing I was very aware that it’s important to get something written down and in any case I was at the time fairly clueless as to what his wishes would have been regarding his care, not something we’d got round to thinking much about.
This accident and the realisation that life can change in the blink of an eye prompted us to both make an advance decision and lasting power of attorney. We’d already made our Wills when had the children.
You can find some more information about advance decisions in this link: https://compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/making-advance-decision-living-will/
I think lots of people, particularly as they get older turn their mind to making a will for their finances, but I wonder how many think to make one for health and welfare? Here’s a link to more about power of attorney, because there are two types the financial one but also the one that allows you control over what happens to you if you lose capacity and cannot make decisions about your health. You can do it online, here’s a link: https://www.gov.uk/power-of-attorney.
We also thought through our personal views on what we would or wouldn’t want in the way of healthcare, this is something that may well change so it’s an ongoing conversation, that we dip in and out of from time to time when life, throws little hints our way. Like for example, my Aunt was very clear on not wanting antibiotics if she had a urinary tract infection, she was in her 90’s in a Nursing Home, health gradually failing, all antibiotics made her feel sick and for her, she felt she was ready to die. It wasn’t something she was worried about, just another marker in drawing her long life to a close, not interested in discussion about different antibiotics. As it was, this is how it panned out. She didn’t want the antibiotics, I’m not sure they would have helped anyway. They might have, they might not, we don’t know but she died very peacefully, the way that she wanted, surrounded by people she wasn’t really close to but this was her choice. We’re all different aren’t we. Not sure that would be my choice but hers nevertheless. She always was a very private person so I guess on reflection it suited her. She was fiercely independent, knew what she did and didn’t want.
I remember when we chose Dad’s coffin, we all looked over the book, I think I’d like one of those, and I fancy that one…so much easier and less of a burden to others when those around us know what we want. Easy to forget, did you make a note of it? That music you said you wanted?
So many people worry about being a burden, towards the end of life, how the disconnected systems of social care make that more difficult, everything a challenge, increasing those worries not the seamless transition hinted at by government, a clunky disjoined system where people don’t pass on information and care needs can get lost along the way, and those who need support don’t get it, supported by those second hand jumpers.
The search for Nursing home care too difficult when you’re already worried, decisions adding to the burden of care, there is some help here ,Help with finding a Care Home | Age UK not that we got to that with my cousin’s partner.
Mostly when we’ve had loved ones ill or dying we just wanted appropriate care within easy reach for visiting, travelling to Colchester adding to the stress, I wonder what difference those early conversations might have made. At least that might be easier these days.
In our groups we would talk about having a rethink about roles as life changed and there were more no so good days, How would you like to be cared for if you had more of those days, those days you might call your bad days or those worse days? Something for us all to ponder. As others have said just like talking about sex doesn’t get you pregnant, talking about dying doesn’t get you dead – sorry for the awful misquote. Sadly those conversations didn’t happen.
Before the bit when you’re discussing the who does the washing up, sitting at the table, peeling the veg’s, that kind of thing, those days that could be used for listening to worries, shared concerns, seems like these didn’t happen either. It’s a gift to look after someone, a privilege but it’s not like it’s a passive thing, a one way street. Not easy though for anyone. Takes a team effort. Can drag everyone down.
I was thinking how my cousin and his wife gathered round their friends to take care of my Aunty, moving furniture, moving rooms, never having enough bedding suddenly, dealing with mountains of laundry, each person taking a shift, trying to help, cooking meals and providing support, reaching out when needed, how providing equipment could only happen at the pace of acceptance of need. Tricky at times, tricky for another cousin.
Makes you aware of the importance of having the right numbers, knowing who to call when things didn’t seem quite right, symptoms uncontrolled. Here’s a link to find your nearest hospice if you are in the UK Hospice UK A life line to some. I’ve heard that phrase used so many times.
Caring not easy for anyone, the emotional toll it takes on all. Hearing some of that from the plumber yesterday. So grateful for the care they’d received in hospital and then at home, grateful for those precious conversations, so they knew what they needed to get on with, the things that could wait.
How hard that is to plan when there aren’t the people around, or there isn’t the right support. Thinking how things could have been so different for my other cousin, with her partner, how those conversations didn’t happen. Hearing he was dying in hospital in Colchester at 2am, the day after she’d being asked if he wanted resuscitation. That didn’t sound right, she was relaying it on the phone, I was struggling to understand, trying to catch up. Tried to support my cousin and understand, this didn’t sound right, surely that’s a clinical decision based on where we are at, he had long term health problems Do not attempt cardiopulmonary resuscitation (DNACPR) decisions – NHS (www.nhs.uk). Perhaps they thought he was sick enough to die. Trying to reassure her but I didn’t understand either, what with not being in the loop. Not quite knowing where we were at. He wanted to protect her, was embarrassed by the medical equipment he relied on, isolated himself and her. I hadn’t seen either of them for months. I wonder how different she would be now if he’d allowed anyone in or if our time together had been more than a brief chat. Did others have conversations with him? Were they seen together. Where does the marginalization sit, mine of her and others.
Decisions made in the middle of the night, did she want to go up there. Didn’t she, what did she want. Neither of us knew. Would he want us there when he’d specifically told me and everyone else not to visit, perhaps not me but I could provide the transport. Everything was a blur, catching up on what was happening.
We sat in a visitors room, waited to see a Doctor, caught up with how he was. I won’t go into the details but it was difficult, life coming to an end without the preparation that could have been there. He died gently and peacefully as people do in real life rather than the movies but the care and attention to planning this part of life wasn’t where it could have been.
Everything was a struggle, we didn’t know where to start. We didn’t know where the important paperwork was, didn’t even know his name. You know in that way that someone has always been called something and it’s completely different to on the birth certificate, know idea where he’d been born or what he’d done…did we not talk at all, that guilt and shame, those gaps that we didn’t know about him…we couldn’t find the pension papers, banking and tenancy agreement, things we needed to pay for the additional costs that come along the way Register a death – GOV.UK (www.gov.uk) so much easier if you can keep stuff all together, know where to find it when or if you need it, hard when you still haven’t unpacked from the latest move. Hard when you decide you’ll bare things alone. Funnily enough they only moved because a window wasn’t fixed by the landlord for years and years. They couldn’t put up with it, moved in the end.
No idea of his wishes, what he would have wanted, I’d tried, perhaps others had too, or not but adding to the stress, not even being able to find relatives. Second guessing if we were doing the ‘right’ thing. No Will, no anything that might have been useful.
I’m reminded of the people I met. How home was lost when in grief those letters didn’t get opened and home lost when their caring responsibilities ended, reminded of how many people live alone in unsuitable accommodation. Everything harder to care at the end. Reminded of those words, we don’t seek help, do we, just get on with it. Perhaps it’s different now?
That must be about the 10th call this morning all these years on. The question that I answered on call number 1, 2, 3, 4, 5, 6, 7, 8. I was advised to let it ring, for my mental health. It’s not working, listening to the phone ring, that unmet need. We’re meeting for a walk. I’ve lost count now of the number of times the phone has rung, I’m coming just let me get out of the door…
We met for a walk, try a little conversation, she tells me she’s bored and lonely, discredits any ideas to ease that, doesn’t want to do anything, try anything. It’s so hard, she wants me to stay longer but when I do it doesn’t help, nothing good enough, nothing meeting any need in any minute, just more company at home, waiting for the next thing, dissatisfied with the now despite the company. After all she’s never lived alone in her seventy odd years. We sit in the sun, spaced apart trying to explore possible solutions, come up with a plan, mostly sit in silence or listening to how bored and lonely she is, words on repeat, can’t notice the sun, the warmth. I ring the Doctor, advised to get another assessment, social services again, this feels like a familiar loop. She’s even more down than usual, lets try again to see if we can find some more suitable accommodation or something, anything, we’ve exceeded all my ideas. We need help, this isn’t getting any easier, if anything it gets worse. No answer, it rings and rings. Hopefully the Nurse will ring back when they’re next in. She says someone rung her, ages on the phone, something about doesn’t fit the criteria but she can’t remember who, what they said or if there is a plan. We explore more options or just try to be. Try to enjoy sitting in the sun. It isn’t working, she wants to go and lie down. I come home. Apparently I missed 5 calls while I was away, calls presumably asking if I’d left yet, if I was on my way.
Oh wait the phone…