It's so quiet

Losing a parent
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My lovely, brave Mum passed away on 10th November after fighting cancer on and off for 17 years and I can’t stand the silence.

She fought and beat double breast cancer at the age of 60 only ten years later for it to return but this time to the bowel. She fought and beat that but she didn’t come out of the battle unscathed, she had to manage a stoma for the rest of her life which was like water off a ducks back to her. “I’m lucky, I have my life” she used to say. I was always in awe of her. Then in 2017 (on my birthday) she was given the news that the beast had returned and was now in her bones. It was secondary cancer to the breast cancer she originally had which was absolutely crushing as she had fought and beaten that one but it was lurking in the shadows all the time. She managed to keep it under control and keep going until she started to dissolve slowly since the start of the pandemic, largely down to treatments being stopped. Eventually her mobility went, as did her continence and dignity along it.

She would ring me all the time for comfort, sometimes in the middle of the night if she wasn’t feeling too well or in pain. Sometimes I would drive round and sit with her until she fell asleep. She never knew but I reduced my hours at work so I could help care for her. She didn’t want the carers giving her a shower, only me. I never told her that I had done that, I used to say that work wasn’t that busy . She may have known deep down but if she did, she never said.

She ended up in and out of hospital many times during the last four months and passed away, luckily at home but in considerable pain. After everything she had been through fighting cancer three times she deserved to pass away peacefully in her sleep but she didn’t. It was me that discovered she was dying and so I raised the alarm. A district nurse came round and then all hell broke loose with syringe drivers etc. I had witnessed my Mum in distress and pain but not to that degree, it was devastating to watch. I felt helpless. I couldn’t even hold her hand as she was in so much pain. These are the images I now have seared into my memory that I am told will fade in time. I’m not so sure.

The main thing is that I miss her, I miss her so much it hurts. I was mentally and physically exhausted most of the time and now I have so much time on my hands. I even miss being so tired that I cry when I pull up on my drive.

I’m 46 and lost my Dad suddenly to a heart attack when I was 24. I never thought I could ever feel such pain and as I did since then but I do.

Everything is reminding me of her. The organisation of her funeral kept me busy as did my husband and I sorting through her things but now it’s so quiet and I long for the phone to ring. I even still take it to bed with me at night, just in case. How silly is that.

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Hello Sal
I’m really so sorry to read of what happened to you and your Mum. I can imagine how distressed you must have been to have witnessed your Mum in pain as you did
I lost my Mum four days ago with Alzheimer’s. She was happy at the prospect of not going to hospital but when the Dr said it would be a 2 day visit only I encouraged her to go and they’d send an ambulance. She deteriorated in front of me however and was taken in as an emergency then 24hrs later passed away. Sadly, like your Mum, there was pain I’d never before witnessed. The assessment ward was just an absolute atrocity, not an ounce of compassion and I have so much guilt about encouraging her to be there for her final hours. Take huge comfort, as I know you do, that Mum was with you in her lovely home and the safety she’d have felt with that and you by her side. That would have meant a lot to you both. So sorry if anything came out wrong there at all.
I understand the silence, it’s unlike any other silence isn’t it.
I just thought I’d send you some kind wishes and empathy as I don’t have a lot of wisdom. And again I hope I’ve not offended as I know I’m clumsy with words. Take good care.

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Hi Tina
Thanks so much for your reply. Can I start by saying that I am so sorry to read that your Mum passed away only a few days ago. You must still be in a daze and not know what day it is.

Please remember that you only acted on a doctor’s advice. If you had known the outcome there is no way you’d have encouraged her to go so you have nothing to feel guilty about. You could not have known. You followed advice, please remember that you didn’t put your Mum in hospital, the Doctor did. I have lost count of the times I encouraged my Mum to go to hospital, she hated that place but she had promises of all sorts from Doctors and all we have is hope that they be a bit more comfortable.

I feel what you said about the deterioration and no one giving a damn. My Mum was taken in as an emergency two days before she passed. She was in horrendous pain but had had a hip op a few weeks before and was complaining of pain in her leg. As time went on she was screaming and looked awful. Ten hours later an ambulance eventually arrived. I don’t know what happened in A&E but she was dropped back home later that day and steadily got worse…who do you call when 999 have dropped your Mum back home? I didn’t know where to turn and certainly didn’t want her going back there. The paramedics didn’t make her comfortable or even get her a glass of water. They dumped her in her bed and left. The state they left her in when I arrived was one they wouldn’t have left a dog in. Most people would at least have given a dog a bowl of water. She came home without any pain relief and her morphine patch was missing so she didn’t even have the edge taken off. She died the next day in agony. As you say, no compassion. Would they have treated their Mums like that?

Your words are not clumsy at all and you have not offended me in the slightest. In fact, you saying that my Mum was in her lovely home with me by her side got me through my evening last night so thank you for that. Of course friends and family have said the same thing to me but it didn’t hit home as much as when I read it from you as I can actually feel that you understand whereas my friends just mean well. But you need to take comfort that you were there with your Mum too. I understand the difference in their illnesses and why you were able to be with her in the assessment ward but you need to take comfort that you were able to be there with her. I so wanted to go with her to A&E that day but wasn’t allowed as she had mental capacity. You were there by her side too. You would have felt utterly useless but we have to put faith in these Doctors that they know what they’re doing.

The silence is deafening. I would imagine you had all sorts of calls like I did. My mobile would be going at the same time as her landline whilst people were knocking on the door and weirdly I miss that.

The only crumb of comfort I can offer you five weeks on is that the images of the pain my Mum was in are not all I think about anymore. They’re still there and I do replay them again and again at times but just not as often. Again, thank you for reply and if you want to chat about anything then please do. If I don’t hear from you I’ll check in on you in a few days as I would love to know how you are. No pressure to reply of course, you’ll have so much to do right now.

Look after yourself and take care x

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Hello again Sal

Thankyou so much for your heartfelt comments. I appreciate your reply.

I don’t know what came over me that night as I actually said to the Nurse, “is this something you’d want for your Mum?”. She said she understood my “situation” but it wasn’t about my “situation”, so you have to let it go don’t you at the time, I am usually so painfully timid that I would be too afraid to pop my nose over the parapet. I get the impression though that it’s the “norm” rather than exception which is so very sad.

Been to Funeral Directors for first time today, kind of makes things more real. It’s the stillness of the house though, as you say. Mum had no mobility with 3 carer visits per day. It was an art form trying to juggle them alongside a highly strung playful GSD puppy that we’d got Mum as a “comfort-dog”. We all lived together. It’d drive me mad at times but I so wish I was still doing it. Mum had broken her hip in 2020 and ankle this Summer. Spells in hospital just accelerated the Alzheimer’s.

It gives me comfort to hear you’ve got to a place where you can carry the images a little less painfully. Reading your original post again I can imagine your Mum’s strength of character and independence. My Mum would never let me do anything for her and saw the intrusion of the carers as an indignity as well. A generation thing no doubt.

Nice to hear you have support in your Husband. My plan was that I’d have my Husband to lean on when the worst happened with Mum but life’s plan was different, and I lost him to Heart issues 5years ago. I do have 2 siblings though.

Thanks again for your comments and I’m sending peaceful and compassionate thoughts to you.

Feel free to chat any time, if you’d like, of course no pressure. x

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Hi Tina

It was lovely to hear from you again. I cannot believe the similarities between us having read your reply but firstly I wonder how you are feeling today and especially now after going to the Funeral Directors? It does make it more real and then you step outside and you feel like you’re in some sort of parallel universe as everything else just carries on as normal. I still can’t concentrate on a lot and wish the phone would ring. I miss her calls the most, all 20 of them in one hour it felt like!

I can’t comprehend how we are thrust into arranging a huge event…for someone else… so soon whilst grieving… Then it’s about a two to three week wait for the day. I hope you have come away feeling like you’ve organised a day she wouldn’t want to miss if you know what I mean. I wanted to organise a day my Mum would have been gutted not to attend and I think I pulled it off. It’s so hard to do though feeling the way you do. I’m sure your siblings are helping.

I am so sorry to read you have also lost your Husband. I can’t imagine to begin what that feels like so I won’t offer any platitudes as I am not qualified to. I have read a few posts within the community by some extremely brave ladies sharing in their heartbreaking grief. That for me is an entirely different level and I am in awe of people such as yourself that continue through such heartache and loss. I am so very sorry that you are having to go through this without his support it must bring back painful memories.

Good for you saying what you did to the Nurse that night. It shows just how upset, angry, frustrated and every other feeling there is for you to have said that if you are normally not the type. I do think you are right that it does seem to be the ‘norm’. It’s rare these days that you get the nurses or doctors that are doing it for the ‘calling’.

My Mum too broke her hip in 2020 but she didn’t know. Due the bone cancer, she went to turn and couldn’t bear any weight on her right foot. She managed to struggle around on it with the aid of a walker as she was far too independent for her own good. We didn’t find out that it was broken until July this year. Long story but the pandemic and the scan not being fully reported back to her GP were to blame. By July 2021 it was too late to operate as it was an ‘old fracture’ they said. She subsequently fell over in October and broke the femur attached to the broken hip and they had no choice but to operate. She then became immobile. Did your Mum brake her hip and ankle due to the Alzheimer’s i.e. not understanding or being able to do as she was told or trying to do everything herself like my Mum used to?

She had too had a pet, although he was a cat, he was 19 and became quite ill when she did. He ended up passing away exactly six months to the day before she did. He was quite a handful when he was here as he needed trips to the vet etc. It took drove me mad as I was completely exhausted but like you I wish was still doing it.

I have to say, I didn’t manage to shower my Mum that many times. She was very much like your Mum and saw her carers as an intrusion too. Even me telling her what to do like…get in the shower. I think she preferred me doing it as she could boss me about whereas they wouldn’t have it. I used to think that it must be awful for your independence to be taken away and have someone else washing you. I would imagine it would have been quite scary for your Mum with people in her home as they need familiarity. How long had she been suffering with Alzheimer?

Not comparing at all as it is certainly not the same but I did witness a friend suffer with dementia with lewy bodies for five years and eventually pass away. I saw him the day before he passed and I was so grateful I had. I said goodbye to him and as I walked out the nursing home, a neighbour to the home had a firework display and they lit up his room it was beautiful. As I got to his door I just stood and watched. For me it was like he was crossing over for me, it was just me him and the bright fireworks. I remember though being more upset at the beginning of his diagnosis at the point when I realised he was ‘gone’. He remembered me though and he really liked and got on with my husband when he was well so he used to get colour in his cheeks whenever my husband walked in the room which was comforting.

Thank you for sending peaceful and compassionate thoughts as well, I send them right back to you. I hope you are sleeping okay. Look after yourself and ensure that you take the odd moment just for you.

Same goes here too, please feel free to chat at any time, about anything. Always here x

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Hi again Sal.

Goodness me what a touching story about the fireworks. That was really moving.

Mum was diagnosed at the “mid” stage in 2019. I do feel guilt that I didn’t notice the early stages, we’ll never know how long she had it. She had fair mobility till 2020 but she wanted to take some leaves from a downspout and lost balance. I didn’t like her being outside, she’d get irritated with me for fussing! With that came surgery. In 1st lockdown no one was allowed in to see her despite Alzheimer’s. I think the downfall came with the broken ankle this Summer, she missed her footing as she was trying to get out of bed. Carers were needed and I think that depleted Mum’s spirit. Another blow was the loss of our 10 year old German Shepherd around the time of her hip break. It took us 12 months to find the courage to get another then she broke her ankle that week and was hospitalised for 2 weeks. Sadly I don’t think she really deeply bonded with it.

The Funeral is New Year’s Eve. We haven’t got anything else in place other than the location. We’ve got all that to think about yet.

Still seems like when we have done this she will come out of hospital and we wil tell her what’s been going on. It’s things like that I think isn’t it that makes things real. As you say, parallel universe exactly.

Time is such a strange thing too isn’t, all perception of it is altered.

Hope I haven’t depressed you in anyway. Have a peaceful day. Always here for a talk.

Thanks for chat! Tina.

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Hi Tina

Sorry for my delay in responding but I have been away for a few days…big mistake. I thought it would ‘rest my mind’ and that a change of scenery would somehow be a tonic. I just felt even more sad and cried just as much. I couldn’t wait to get home so cut it short. I guess I wasn’t ready but didn’t know that until I got there.

Also yesterday was flat clearance day. It’s hard looking at her home now empty. Even after all I have been through, it made it more real somehow when I could actually see empty rooms.

How are you feeling now about new year’s eve? I would imagine everything is arranged. It’s my Mum’s birthday that day so I will be sure to think of you. I felt extremely numb the next day, not to mention drained. It’s a hard day and one that’s so emotional. I know exactly what you mean about telling her everything that has been going on. I still find that now. I found the worse thing about the funeral was not being able to dissect it with her the next day. Someone turned up who really shouldn’t have and had a nerve quite frankly. I’d love to have known her thoughts!

I’m sad to read you have feelings of guilt. You couldn’t have possibly known for definite and would it have changed anything if you did? She sounds like a strong willed and determined lady just like mine. She too hated me fussing but we both did it because we loved and cared for them and your Mum would have known that, she’d have felt it. Sometimes as well when you’re in it…and what I mean by ‘in it’ is in the thick of it, in the trenches on your own, you can’t always see what’s going on above ground. Life gets in the way and so do its frustrations. I have the same feelings as you. The shoulda, woulda, coulda feelings but in reality nothing was going to stop our Mum’s doing what the hell they wanted anyway!

Please never think you’re depressing me in any way. I love reading your thoughts and feelings as it helps me to realise that I’m not going mad, that I’m not on my own and also to understand that it’s normal.

I’m not expecting a reply as I know it’s not always possible. So if I don’t hear from you then I wish you a peaceful Christmas and you will be in my thoughts on new year’s eve.

Thinking of you, Sal.

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Hello Sal

Oh my goodness, an uninvited guest at your Mum’s service, I can totally understand you wanting to tell your Mum about it!

Thanks for your kind reply. I’ve been really struggling since I last posted and seem to have shut down somewhat.

Sorry to hear the trip didn’t have a better outcome, but you don’t know till you try so just think of it as a test run for the next time when you’ll have found your bearings a bit better.

I can identify with what you say about the empty rooms, that must have been difficult. I remember with my Husband that yes, all his things we’re still in place, but “weren’t” if that makes sense. They seemed to take on a persona all of their own. With my Mum I haven’t been able to go in her room since. I haven’t been able to go out alone yet. Some like to be out and others like to retreat. Logically I know retreating isn’t a good option.

Did you manage Christmas? I hope it was as peaceful as possible. I hope your Husband is doing well too.

Nice hearing from you. x

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Hi Tina

Just wondering how you’re doing since the funeral and of course how it went. I would imagine you’ve been feeling quite numb since. I don’t know about you but the funeral didn’t make much difference to how I felt. A few people said “you’ll find the funeral will help” but it still doesn’t feel real to me two months on.

I’ve emptied her home, handed the keys back and now have to move forward but I just can’t seem to. Christmas was just so sad. I didn’t know what to do that would somehow ease the pain I was in. My husband said we should have Christmas at hers one last time as we’ll never have the opportunity again. She used to come to us and so I didn’t want to be at home. We did but I realised it didn’t matter where I was I was going to upset anyway. How was your Christmas?

I do hope you’re ok. X