The nurse said it would be better to come as soon as possible, rather than wait until the weekend. So some work has been cancelled, a seat booked for the coach, and only then did I wonder who would be looking after Himself. My panic levels rose as I left texts and got negatives for answers. Fortunately J&B, with whom MasterB bonded so well over Christmas, declared themselves up for the task. I have written the notes, stocked up the biscuit container (his, not theirs), and started to pack my bag.
Aunt, who was so wonderfully alive last week, is fading. She is now bedridden; too weak to support her own weight; unable to keep fluids down. She has, finally, agreed to care, and forms are being hastily filled to apply for funding so that she gets the attention she needs. Tonight she is on her own. A risk. But she has slept most of today and seems unlikely to stir much in the night.
Yesterday I had a conversation with one of the visiting community team. She was loud about her duty of care, about how Aunt would be safer in the hospice, how these things needed to be considered, and Aunt’s stated desire to stay at home could be overruled in her best interests.
I politely disagreed, saying that to my mind to move Aunt now would be an act of cruelty. Yes, the care would be better, yes she would be safer, but what she wants is to die at home with her friends near her.
We resumed the conversation a while later after the community team had been with Aunt, who, despite buckling knees, had insisted she did not need anyone. The team member’s attitude had changed. We will do all we can to keep her in her own home, she said.
A Marie Curie nurse was found by some miracle to spend the night with Aunt. Linda said she was lovely, and it maybe because of her loveliness that Aunt has surrendered to having carers with grace and dignity.
I was worried about tonight. Maybe she won’t try to get out of bed, but how about toiletting? She is wearing a pad, but that’ll need to be changed. Probably not, said the nurse. She was dry this morning and this afternoon.
Bells rang in my head of Mother’s death; how she stopped passing urine a few days before she died.
Does this mean she is going to die soon? I asked.
The nurse was matter of fact, almost surprised I needed to ask. She thought we were certainly looking at the last few days of Aunt’s long life.
So I cancelled some work and booked the ticket. There may be no more photographs of Aunt smiling.
As a terminal cancer patient. this both means so much to me, and frightens me
Because of the threat of loss of autonomy? or of dying? My aunt does not fear dying, but she wants her life to remain in her control. She has made this clear over and over, so we are acting as her advocates.
because of the loss of autonomy. I cant imagine not being in control of my own body.
No that’s a hard one. Aunt and I have talked about it, and the need to surrender pride and accept help. Not easy.
Not at all easy.
And something we most of us have to accept.
I am reading Being Mortal by Atul Gawande. It is a thoughtful and thought provoking book about death and dying, aging and how health professionals struggle to be honest with patients when they can do no more.
It’s not an easy read, but it flags up how we often think of dying as somehow failing, when it is not.
check out my blog ?
Not tonight, but maybe soon.
So sorry to hear Isobel. I hope Aunt is comfortable and can continue to be supported to stay in her own home. My thoughts are with you xxx
I don’t really believe she is going to die. She has been so amazing. Had a v long conversation with Uncle Bill tonight. xx
Sorry to read this Isobel, I hope she manages to stay in her home and accepts the carers. Wishing you a safe journey and thinking of you at this difficult time…xx
Apparently she was quite serene tonight, and said she felt better…
She has repeatedly said she does not want to linger. If she dies tonight before I get to see her again it would not be a bad thing for her.
But you know she is a fighter! I have driven through the night to Cornwall on several occasions when I had the “you had better get here call”…only to arrive to find he had made another amazing recovery!! Take care and safe trip…
Thanks, but she has already outrun the Heavenly Taxi by several months, at some point it is going to catch up with her, and she is so very tired.
Isobel, no words. Only that I am thinking of Aunt and you. My heart is with you both. I feel like I have said it all to you… and “all” is not enough. I will miss her smile. Glad you are on your way to her.
Thanks Pix. I have appreciated your support. xx
Oh Isobel… the header. ♥
Now I’m feeling the distance wondering if asking how things are going should really be how things went. Either way, I hope it is peaceful. Thinking of you both,
Thanks Kathy, and the truth is I don’t yet know. I woke with a start around six, convinced she had died. And I don’t know that she hasn’t. Death may be quick when it comes but, and I hope this doesn’t sound too whimsical or pretentious, their last breaths hang in the air for a while and for those who continue to live the acceptance of that death, and adaptation to life where their absence seems incongruous, takes quite a while longer.
Thank you for sharing your journey and glad to hear Aunt can be in her own home near her friends. And you’ll be there. Thinking of you.
I shall be coming home again tomorrow. So I don’t know if she will still be alive, but this is almost certainly the last time we’ll see each other.
I’m thinking of you both, Isobel. I’m so glad you are going there today. And well done to you for supporting Aunt, respecting her former autonomy as she loses it, and enabling her to die where she has chosen to, at home. Your love for her is a gift. Mami sends you a heartfelt little purr.
I think one of the turning points for the member of the team was when she understood that neither Linda nor I had any insight into Aunt’s finances, that we had not been allowed to clear things from the bedroom, that Aunt had kept control of all areas of her life. I am reading Being Mortal properly, as opposed to dipping into it, and every page so far has me nodding in agreement. Not an easy book, but one I feel we should all read and think about, particularly the adult children of the elderly, and health professionals.
Isobel I’m thinking of you and your brave, determined Aunt.
Thanks Gilly. She is brave. uncle Bill was saying last night how she has shown no self pity since her diagnosis, only acceptance.
So sad to read this, Isobel. Thinking of you and Aunt and sending love.
I want to say to you not to feel sad, that this death has come later than we could have hoped last year, that she has had a long and useful life, but I am sad. It is sad when someone you love dies, and so hard to imagine a future that does not include them.
Oh Isobel. Aunt is marvellous and will be missed by many. You and she are doing great things these days
I thought I was going to miss the coach but made it here to Victoria Coach station with minutes to spare, only to find departure is delayed by fifteen minutes…
Just getting my heart rate back to normal.
This lady is such a credit to life. She puts me to shame certainly. Hugs to you both xx
Was travelling to Suffolk myself yesterday, so only just catching up. Hope both you and she are ok, in whatever way ok needs to be interpreted for the best.
Thanks Lorely. The Heavenly Taxi arrived this morning. I hope your visit positive.
My thoughts are with you at this troubling time.Keep strong.