This could be long…
My mother. Brenda, mid April 2023 shortly after her 85th Birthday. Still shopping, still driving, totally ‘with it’. Still cooking, cleaning, you’d honestly think she had years in her yet. Her husband, my father is 90, and largely house bound. Of the two one would expect my father to pass first. She had a very mild stroke in February but it only temporarily affected her speech and she only spent one night in hospital largely for observation. No real health issues though she had seen a doctor last November over a lump on her hip dismissed as a cyst. She’d also been diagnosed as slightly anaemic that being blamed on her getting more tired, sleeping more and more during the day. However, often only for a short time. She was remarkably active. Could barely sit down for 5 minutes, constantly cleaning, feeding the cat, preparing food, washing etc etc. This mild stroke saw matters investigated but it wasnt until late April she was officially told it was skin cancer and she was refered to a cancer specialist 17th May.
Sunday 13th May is the first time she sleeps most of the day, but remains largely ok. Friday 11th May she’d still taken herself shopping! But on the 17th shes told its terminal given 3 to 6 months. I rapidly begin to think its looking closer to three than six months, but my expectation is 3 months, 4 if Im lucky. All summer if Im lucky. By the end of May Im beginning to wonder if even that might be optimistic? At my place of work, the first full week of June has someone away on holiday making it hard indeed, for me to take time off, but the rest of that month is free for time off. I promise myself at least, that if my mother becomes bed bound Im taking time off work.
First full week of June with someone off, work is insanely busy. Monday she’s still ok though. I leave my mum and dad to themselves at home and Mum still made lunch etc for my father. Tuesday my sister comes up for a few days and takes over looking after them and shes still ok, still walking anyway. Sleeping a lot but still able to get up if needs be. Monday I got to their home from work to find her feeding the cat and if only a bowl of soup she was still eating but Tuesday evening before returning from work, unknown to me, my sister gives her two doses of oramorph and that night she sleeps downstairs in the study where we had moved a bed, for when the day came she could no longer face the stairs. The time for that did appear to be approaching but not so soon. She could still do the stairs Monday evening. We put a bed in the study for the day it was needed as I by myself could not get a bed downstairs so me and my sister moved one just in case it was needed one night. She did not however want to sleep there. She was determined to continue sleeping upstairs where her clothes were. I was monitoring things and by this time, late May early June I was beginning to wonder if she would make the end of the month, the month of June and early July was a concern as somebody had yet again booked a week off first week of July but that left three free weeks in which I could take sometime off at least. Couple days a week and it looked like she would live best part of June at least, MAYBE into July. Beyond that I was increasingly doubtful.
What pains me is, my place of work seems to love chaos. Phones literally never stop ringing. We were, are really, understaffed even when fully staffed but with one away that week we were definately understaffed. I was under more pressure to work than be with her because I knew. I knew it was crazy busy there at work, one guy away that week and my sister came up that week so I worked it knowing work was crazy and understaffed.
The pressure was on to work. Largely because by contrast, I didnt know my mother wouldnt live the weekend. Indeed I didnt know she had stayed in bed all day Wednesday until that evening and even then it was because my sister made her stay so. I felt the pressure rising to be with my mother Thursday and especially Friday but it was Friday… work that day and then I was free the weekend and able to take time off the following week if she didnt improve. Working I dont think I realised how fast she was deteriorating. I really only saw her late in the evening, asleep, as yet again they had me finishing late Wednesdays, Thursdays and Fridays being the busiest days.
My mother was pretty conscious Wednesday at least but I only saw her briefly Wednesday night. All I know is, she gripped my hand really tight. I think it scared me? And I left not really saying a lot. I needed her to hang in there. I was still under immense pressure to work Thursday and Friday. I saw her briefly those last two days but Friday certainly not when she was conscious. I dont think I could accept she might not last the weekend? Given she seemed so ok Monday and still Tuesday I dont think I liked this very tight hand grip. I wasnt ready to say goodbye. I needed her to last until at least Saturday sometime when I could spend time with her. I think I just refused to say goodbye then, that Wednesday night. My sister was also stood in the doorway and I dont know why but I didnt like it. I panicked? Whatever, I got up and left and it was the last time I saw my mother when she was still really there, conscious and with it though she didnt actually say anything. She just gripped my hand real tight.
So fine was she Monday and Tuesday I just couldnt see her passing so fast. There was loads I wanted to tell her but over the previous couple of weeks I didnt want to say it, as if she only had days left when she could have and appeared to have a few weeks left at least so I never said it. Thankyou. Goodbye, whether she was scared etc. I left it because a lot suggested there were a good few weeks left in her yet and so I guess I didnt want to talk as if there werent. One wants to maintain hope I suppose. Start talking as though theres only days left and you might destroy that hope that kept my mother going. The impression I got was that my mother also thought there were weeks left yet at least too.
To find she’d passed Saturday morning before I got up was painful. And a huge shock. I wanted to say goodbye, thanks for everything, sorry for not doing more. Telling her how much I would miss her much as, I had no idea just how badly I would, we all would, miss her. Sweet, kind, very much able to engage in conversation, very active she made home, home. Without her, its just a house.
Friday night my sister had again before my returning from work requested a nurse visit to now inject morphine. Me? I was far more conservative with medication in part because my mother didnt seem to particularly like it. Maybe, like me, she feared it would knock her out never to wake up again? She rarely complained of pain and when she did it was mostly about the dressing on this cyst which was actually cancer being too tight. I gave her oramorph once with that hurting to try and help her sleep. The dressing was changed the next day. Even then though, she didnt want it.
Its painful for me how I gave those last few days to my job rather than her. I consider my employers immature and abusive. They are full of bravado. Lads basically if mostly in their 40s and early 50s. They seem to think they own me, 24 hours a day 7 days a week. I advised them of her passing by text. The reply was; so sorry to hear, but in truth, I knew they really couldnt give a damn. The second message is much more them; Do you need a couple days off? Come back Wednesday? It wasnt a request!! I replied I think I’ll need a bit more time off than two days. Now the real them emerged. The phone calls begin. Knowing what theyre like I refuse to answer. They sent a message. Its manipulative guilt trip time. Come on, you know its crazy here when understaffed, this isnt fair on us. We need you back. NOW!!! Basically, it was all about them. They couldnt give two hoots about me and theyre like this with most of the staff. I told them to consider me off sick. There was no way I could return to that intense job at that time and perform. I had for starters, a funeral to arrange. I phoned my doctor who phoned back, and over the phone, wrote me off sick for two weeks and sent me a sick note. I took a photo and sent it to them. Not that even that stopped them. They seem to think this is like when you read Tina Turner or whoever has died. Oh, she died, and thats it. So what? Doesnt affect your ability to work does it? Thats genuinely how they seemed to think this was too. The weather was great in the UK that month and they genuinely seemed to think I was just using this as an excuse to enjoy the sun. They havent experienced bereavement themselves yet. Not of close family members anyway and full of bravado make out they couldnt care less if their parents died. Maybe they wont? But my mother especially was very very kind, sweet and caring and deserved being cared about and for in her final days.
That week 10th to 18th June was hot and sunny. Sunday 18th I found my father in a contorted position at the bottom of the stairs his head bleeding profusely. The shock I think saw him drink less, the heat dehydrating him and I think he fell. Anyway, I was told an ambulance would take between 1 hour up to a maximum of 4 hours. He was conscious when I found him but I went to see if I could get the neighbour to help me get him to hospital in the car because I very much doubt he would have survived an hour never mind four. When I returned he was unconscious. Got him in the car and down the hospital. Fortunately only a five minute drive away.
There, I got the attention of an ambulance crew who I watched try to get a pulse. They quickly grabbed a machine in a bag out of the ambulance. Unconscious, I got the impression Id lost him too. Looked to be a defibrilator. I turned away but when I next looked theyd actually attached two wires to him and had evidently detected a heart beat and so, were getting more staff to help get him out of the car on to a board, and off the board on to a trolley. I then had to wait whilst people tended to him. Only on advising my employers of this by text, did my employers finally seem to get the message! I wasnt returning until after the funeral and it wasnt negotiable. They finally stopped trying to get me to return.
My father survived but it appeared to be very touch and go the first few days and he really wasnt with it. Like he had full blown dementia. He was moved to a ward in which to recover after four days and spent three weeks in hospital before being discharged. He displayed very very mild symptoms of dementia before this but he was largely with it. He has largely recovered but he now requires considerably more care than he did before. Carers visit four times a day. My mother was his carer but he could largely look after himself at least in the house. He could put himself to bed, get dressed and shower but she made him cups of tea, lunch, dinner, did the shopping, washing, ironing etc. And she never seemed to stop!! Although she seemed to like getting out doing the shopping, having a chat with people and it seemed to give her purpose in life. I have for some years, tended the garden and was spending no small sums of money on it in an effort to improve it and maintain it. My mother at least, seemed to appreciate a nice looking garden so I reseeded the lawns, and spent loads on plants and flowers past few years. Alas it takes time and money and its only now finally starting to look really quite decent. However, the motivation is gone. I still maintain it but theres no point trying to improve it anymore.
My biggest regret is those final four days. Tuesday, Wednesday, Thursday and Friday. I literally handed my mother over to my sister to look after who gives her a double dose of oramorph Tuesday evening and it then all seems to go wrong. She goes to bed downstairs to never get up again. Understaffed at work its like I didnt stop to think. I think stress messes with ones thinking and thats how my employers seem to like it. I gave that time, her final few days, to my employers who I knew not to care and who I consider to be abusive. They do; they think they own you 24/7. Its fine for their business to encroach on my home life, they give us business cell or mobile phones and the expectation is, that youre available to work 24/7. I frequently finish late and they seem to think Im permanently on call but, ones private life is not permitted to encroach on ones work life if they have it their way. To them, thats a big no no except to the bosses, the owners who have very different rules for themselves.
I knew they didnt care. My mother by contrast cared a lot about everything and practically everybody. She deserved my time. Me and my mother were very close. My employer didnt deserve my time. The reason I worked was that it was understaffed that week and I knew that. I didnt expect her to deteriorate that fast being largely ok Monday and Tuesday so I didnt KNOW she would pass Saturday morning. Even Wednesday she seemed to be largely there and would probably have got out of bed but for my sister who made sure she stayed put. I wonder if, had I cared for her, would she have lived another day? Or two? Or another week? Or two? Or three? And then Id have been able to take time off work to spend with her. I was more conservative and cautious with medication than my sister and I just dont think she needed two doses of oramorph at that time never mind morphine Friday evening. It pains me how, in her final days, I gave my employer all I could. My mother, very little from me from Tuesday onwards because I was finishing work late that week and I did; I literally handed her care over to my sister and this was another big shock…
My sister really didnt seem to care when my mother passed. Made phone calls then started cleaning up all the medicines etc and was later more concerned about finding her will. She just suddenly, no longer seemed to care. I suspect my father found her cleaning up stressful too. I mean, she even started talking about emptying the closets of mums clothing. I personally found it bizar and it actually saw me look in the diary where we had to record what medication was given. She’d already torn it out and thrown it away though I found it and thats when I saw it; two doses of oramorph Tuesday evening. Having reached the bottom of the page, there should have been a new page but I never found that if records were kept beyond then. There should have been more. I took it my sister cared and so left my mothers care in her hands. Now suddenly I got the impression she didnt!! She just didnt seem to care. Some it seems, dont? I think this really messed with my head and emotions too. It was like I fully trusted my sister to genuinely care about and for my mother. Now having died that morning it was as though she never really genuinely did and so she set about clearing up and finding the will. I still find this incredibly odd. I still think my mother had a couple weeks left in her, left in my care but I’ll never know. I can however say I would not have yet doubled the dose of oramorph. A single dose before going to bed MAYBE but not double. We were advised that increase was for later.
Regards the funeral apart from advising family she left absolutely everything to me. I think and hope I did her proud but wow did I find it hard.
I returned to work to be sat down to be basically told my time off was unacceptable costing too much money. Chaotic, theyd had no choice but to reduce the work load. The impression I got was they really wanted me to resign. They think they own me, at least whilst they pay me. They tell me to return to work, they expect me to jump and return to work. If you dont theyll get someone who will. Thats the attitude. I want to leave but too many are no better so Id rather take my time looking. Being out of work would only add to my issues possibly proving dangerous? I think I could do to recover a bit more financially and emotionally before really looking for another job. Carers are currently visiting my father four times a day too so that helps me to work too.
The worst part of all this? You dont get a second chance. You dont get to see your mother or father alive again. You dont get to say sorry etc. I needed to be there for my own well being in my mothers last days. Days I instead gave to my employer who has never even said thankyou. They didnt appreciate it. Their attitude is thats what they pay me to do. Be there. My mother would have appreciated it and so would I.
Will I see her again? I will one day join her. That is guaranteed. Whether I will see her again I do not know. I miss her voice. Her presence. My father is almost impossible to talk to. My mother one could really talk to. He just doesnt talk much at all. In truth, he just wants to join her. I got my mothers passing wrong. She didnt live the weekend. This is what hurts. To all who read this, thankyou. I know its long.