The hospital chaplain visited us again today and has found out about brain donations. It is very straight-forward apparently – I just need to sign a form when I go to get the death certificate at the hospital’s bereavement centre. That’s good. I wonder what else I might have forgotten.
Debbie is heading home again tomorrow morning. So tonight – Friday – she is going to my house to get a good sleep before her journey. I can’t believe Mammy is still here. I wonder how her body keeps going with no water or food for nearly a week?
This morning Mum’s nose was frosted with white crystals (I had to take a photograph). Most of the time Mammy is peaceful, sometimes with eyes closed, sometimes open. Always her mouth is open and I use the pink lolly-sponges to moisten around her gums and tongue so they don’t crack up.
Yesterday they gave me some saliva gel to use instead of water and it seems more comfortable. It is strange just watching and waiting, knowing that we can do nothing but be here with her. Mammy doesn’t respond to voices now, not even deep, manly voices, but I hope she knows we are here and is comforted by that.
What if she’s just waiting to be left alone so that she can die in peace? I’ll warn her from now on when I leave the room, in case she wants to slip quietly away. Maybe I sound very cold about it all, but I feel very much at peace here and privileged to spend this momentous vigil with her as she passes into her heavenly inheritance. I hope she is not afraid to die, so I keep reassuring her from scripture.
Occasionally I am overcome with emotion and weep beside her, but that is when I think she is afraid or in discomfort. I have had to request some supplementary shots of morphine today as she seems to be moaning and contorting her body. I don’t want her to have any more pain now.
Debbie said her tearful farewells last night, reluctant to go but very glad to have shared this time with Mum. I am grateful to have had Debbie here for these few days too. It has been so good to share this together and have the necessary space to discuss what we want to happen next. It has also allowed me two nights with my family and in my own bed.
I must say that I am becoming a little weary of these walls, noises, bleeps and long corridors, but I don’t resent them.
Julia has come to the hospital after work every day to see Mum. I have appreciated that too. It feels good to have some family support.
Simon has done sterling work keeping everything together at home and I am doing what I want to do for Mum, for as long as it takes. I couldn’t even consider not being here with Mum now.
I want to see her when she sees Jesus coming to take her home. I am spending a lot of time reading the scriptures aloud to Mammy and have written down a list of possible verses to read at the funeral. I hope that someone will read from the Bible to me when I can no longer do it for myself. Monica has been too poorly to come see Mum – I know she would have done had she been able.
The ward sister from Sunny Meadows phoned me at the hospital today to ask when Mammy is coming home. It was hard telling her that she is not coming home and is ‘on the end of life pathway’. I don’t like that expression too much, but can’t think of a better one for them to use. The ward sister seemed shocked and it set me to doubting and questioning everything again. I did ask her about their decision to send Mum into hospital – what had precipitated it, why she hadn’t been eating or drinking and for how long… but I don’t recall how she responded. I am left with many questions. Mammy was admitted with a urinary tract infection and dehydration and now she is on the ‘end of life pathway’. The ward sister’s shock has reawakened my own.
Sunday morning is here again and this is church for me at this moment. Mammy seems to be weaker today and I get the feeling that turning her and changing her is causing her unnecessary stress. She is no longer passing any waste products and she doesn’t seem to be getting any bed sores, so I’m sure they can leave her be. I’m sure they know better though and I don’t want to be critical of the nurses as they do such an amazing job. She does have an enormous blister on her heel though, so we have put a pillow under her calf to prevent it rubbing or bursting.
The last couple of days I keep thinking that perhaps Mammy is just not ready to die. I keep wanting to give her some water to drink and feel like she would then just get up and walk home with me. I also wish I had thought to bring Mum home anyway, to die there instead of spending her last days in hospital. I’m not beating myself up about it, as I don’t think Mum knows where she is and she does have familiar music and voices around her all the time. Maybe it is best as it is. It is as if her body, mind and soul have gone, but all that remains is her spirit. So my spirit is staying to commune until hers is ready to depart. I really did not expect her to stay this long though – she is such a tough cookie and physically there is not much wrong with her. But I can’t help thinking that the decision to put her ‘on the end of life pathway’ was maybe premature. I suppose it is natural to doubt one’s decisions and choices?
I think I will write down my questions and see if I can speak to the consultant if he’s around tomorrow, because now I cannot remember what he said to me and Julia last Monday.
Monday was a week ago now and even the nurses seem to be amazed that Mammy is still in the land of the living. I hope I see the consultant today and hope I am brave enough to ask my questions. I don’t want him to think that I am blaming him for anything. I don’t know how I feel today. I don’t know how Mum feels either. The nurses say that she will not be aware of anything now, but they also say that the sense of hearing is the last to go, so I must stay positive and reassure her at all times.
Question 1 – Why did you think she was ready to die?
Question 2 – What do you think she is dying of?
Question 3 – Do you think you gave enough time for the antibiotics and fluids to work?
Question 4 – What were the crystals on her nose?
Debbie got home safely last night. I have read most of the New Testament again since being in here – it truly is the most amazing book.
The consultant seemed surprised to see us still here too. His answer is that ultimately he knew from years of experience that Mum was ready to die and that to let her go naturally was the best and kindest thing to do. I think Isabelle knew that too. He also says that she is dying of ‘brain failure’ – that the Alzheimer’s has killed her brain. I mentioned how I wished I had been able to take her home and he apologised for not suggesting it to me. He was very understanding and said that he welcomes these questions as they keep him in the real here-and-now and keep him checking himself to make sure he doesn’t lose touch with the most important aspect of his job, which is people’s lives.
I showed the consultant the photo I took of the crystals on Mum’s nose and he said that is more likely to be urethra, as it does excrete in crystalline form. Urethra is what the liver gives off when it has failed – it is also supposed to make you feel high and happy.
So I am feeling a bit better again now, but very tired. Julia was also feeling ‘out of sorts’ today. She hasn’t missed one day coming to see Mum in hospital yet. Each day you think it is going to be her last one.
Well, today is Mammy’s last day on earth and the beginning of her life in heaven. Today, the 28th March at 7.30pm she slipped away. And I nearly missed it. Joshua arrived unexpectedly and flopped down on my mattress, saying that he was missing me and didn’t feel right. I was still holding Mum’s hand, but talking to Josh, and Mammy gasped and stopped breathing. We both stared at her to see if there was any movement, any pulse, any sign. After what seemed like a couple of minutes, Josh suggested he should go and get a nurse.
While he went I hugged Mum and held her tight, feeling sort of dazed. Suddenly she took such a loud gasp of breath right in my ear that I jumped. Two nurses came in and looked at Mum, their faces looking suitably composed and sorry as their glance confirmed that she had gone. They checked her and then left us alone.
“I feel good again now!” Josh said almost apologetically, “I knew something was going to happen.”
“And you can have a lift home too!” I smiled.
I could go home, but was slow getting my things together. I kept looking at Mammy to check that she really had gone. I tried closing her eyes and mouth but couldn’t. To let go myself and leave her empty body there was harder than I imagined, after such a long vigil. I felt light-headed and lost.
I am glad Joshua was with me to keep me down to earth and to ease me back into the other reality of day-to-day life.
I am looking forward to a long night’s sleep and a home rest for a day at least – the thought of facing funeral preparations and my business are a bit scary just yet. I thought I was well prepared for the final day, but I feel flat and numb now. I have let family know already.
Tonight I will have a glass of wine to celebrate Mum’s life and her journey home.