Thank you all for your comforting messages. I know I’ve neglected you and also the kind personal messages. It’s because these last few months have been so distressing. Not just for us but it was so awful I was afraid to share the horrors of the last few months of my DiL illness with you. I know the lockdown was necessary but oh how it impacted on her treatment. No one oversaw her drugs apart from the occasional useless telephone call. (We found out during her last weeks that her suffering was made worse because of this) she was left for hours screaming in either pain or distress. I found telephoning all the agencies upsetting as I begged for help/visits. The telephone consultations were difficult to hear so I used to leave the room in order to hear. I begged, I cried on one occasion I had to be rude and make in abundantly clear to a poor receptionist that no I wouldn’t be triaged for the umpteenth time that day and tell her “shut up and listen, my son is here with his terminally ill wife screaming for 18 hours a day while my three young grandchildren listen” still her g.p didn’t come out for five hours, five hours! When he did eventually arrive oh he couldn’t apologise enough. It didn’t make much difference because same situation happened two days later. My poor son used to telephone in tears. Now the Marie Curie Nurses were wonderful but even they were often late. I remember begging them to make her a priority. In the times someone else took over I would telephone the hospice and nicely explain the awful impact on my son and my very deep concerns about my grandchildren’s mental and emotional well being and our inability to manage my DiL pain. They were very understanding but still nothing happened to improve our situation.
I know that my poor son would telephone to say he just couldn’t manage. One time he was forced to say “just take her away” the guilt he feels now is awful. But he’d gone three night with no sleep trying his best to shield his children from her screams three floor below one of their bedrooms. In the last week before she died I started to make all the telephone calls in the room with my DiL I couldn’t hear them but I knew they could hear her and mostly someone arrived within a two hour slot.
Now I really want to be fair. The hospice did arrange for people to visit to wash her in the last three weeks because by this time she wasn’t able to even sit up. In the last two/days they did send nurses to sedate her.
I just can’t get all this out of my head. I can still hear her shouting “help me, help me” over and over. “Im scared, I’m scared” and perhaps for the first time since the whole thing started her screaming “it’s not fair” I can’t do this it’s not fair” I can still feel her hand squeezing mine as she lamented “it’s so dark, it’s so dark” (she’d lost her sight a few months before)
When we eventually got the telephone call to say they had a bed in the hospice and they were coming that day, but that only her next of kin could visit the whole family came to her bedside to say goodbye. Now I’m at an age when I’ve had to wait for many a much loved deceased to arrive at the door in a coffin so I know how it feels but this was so much worse. Waiting five hours for the ambulance to arrive. Feeling as if we we’re abandoning her to a lonely death, that we’d never see her again. Forcing her to leave her home, her children, the people who’d loving cared for her for such a long time because we had failed, we couldn’t cope. Watching as her two eldest daughters kissing her goodbye. Her poor mother soaking up every nano second with her daughter, her poor dad struck dumb with sickening fear on the other side of the room. Too afraid to say goodbye because he wanted the strength to support his wife and grandchildren. Knowing the two youngest would come home and be told they probably wouldn’t get to say bye or see their mummy again.
She had six days at the hospice and they were more than wonderful. They relented to our begging to let her mum be with her(the poor girl called pitifully for her mum all the time) as well as my son. They sorted her medication, they were kindness itself to my son, reassuring him that he’d made the right decision and had managed wonderfully in worse than difficult circumstances. They even allowed all our grandchildren in for an hour two days before she died. My DiL had a few days without distress or pain and she slipped away gently in her sleep six days after being admitted. But I never saw any of that. All I have is the sound of her distress, the feel of her hand as I tried to comfort her. The feel of her poor rough hair and skin as I stroked her. I’ll never know if I did or said the right thing. It haunts me. I’m so sorry I hope this doesn’t distress any of you. I wanted to explain my lack of communication. I felt so rude when you’d all been so good to me for such a long time.