The Heart Failure Diaries 4 (anticipating loss once again)

It’s been 4 months or so since I last wrote here about mum or anything else. I’ll tell about other things in another post. We had a really good summer with mum. She was relatively well in herself and 2 of my nephews who live overseas visited with their partners so she got to meet her great granddaughter as well as a visit from another nephew and his baby son. We went to Scotland and saw the other two great grandchildren; and had a lovely birthday party for her. Thoughts of death and dying receded. Then early October she was sick. I had Covid at the same time and there was a part of me that thought she was being dramatic, as I’d been away the weekend before and she doesn’t like it when I’m not available. Once I tested negative I went round. She looked terrible. Coughing relentlessly, grey in colour and breathless. I ordered a pulse oximeter and took it round the next day. Her sats were 90 at rest so I text the GP asking when I should worry. He called me straight back saying call an ambulance. Mum was stony faced. “I’m not going” she asserted. “You have to” I insisted, “you need checking out and the doctors can’t do it”. I rang the ambulance but they said we didn’t qualify for one so after promising I wouldn’t leave her there we went to hospital.

A&E was busy but not crazy and we got triaged relatively quickly. Her sats were up to 95 by then. My back was bad so pushing my mum in the wheelchair was difficult. I left mum and got us food, and then spent ages trying to get a phone charger out of a machine as I was on 1%. I’d managed to cancel my clients but not the room bookings. I’m not good at waiting and neither is mum. After a couple of frustrating hours or so mum said “Let’s go – I’m not going to stay so what’s the point?’ We went home, I settled her and insisted she was to call me if her oxygen dropped below 90. She text me later to say she’d had a shower and it was 76 but then said she thought she’d read it upside down! Our GP was very understanding and said he would see her and check bloods in the morning. He’d had a woman drop down dead in the surgery the day before with sats of 88 so was understandably freaked out by my text.

During this episode was the first time I’ve seen real fear in my mum’s eyes. It’s also the first time she’s talked of giving up and not wanting to go on like this. For my part it’s also the first time I’ve acknowledged the strain by telling my siblings. Being under the weather myself and in pain from my back; cancelling work when I need the money and visiting every day as the person who helps her decided to go away in the middle of this all played a part but mostly it was the sense of being back in death’s waiting room. The uncertainty, the not knowing what, how or when it will come. Mum has slowly recovered but it’s left her even less able to do things. We wouldn’t contemplate going out without the scooter or wheelchair now. I’m hoping we can get home oxygen sorted soon so we don’t need to go to hospital next time she’s ill. We talked about this and I was clear that by not going in she may well die sooner than if she did but she was very clear “I’m 84 – I don’t want to die in hospital”.

So although things are settled now I’m anticipating a tough Winter ahead. I wish I had stayed with her when I realised how unwell she was but I think I only half let myself register it at the time. Can we ever see our parents as they are? I didn’t want to fully register her fear or neediness. I’ve promised myself that next time I will as I don’t want her to be frightened and alone. I hope it doesn’t come around too quickly though.