Mum is dying

Hi Lyn

My mum is a medical mystery and has bounced back a bit this week. She shouldn’t be here but is. I am truly exhausted. The carers she have are wonderful but the admin is a nightmare with rotas etc. Today she tried to put her watch in her ear as a hearing aid and was putting things in her duvet cover. Realised her wedding ring is missing now which is really upsetting me along with everything else.

I have so much guilt about missing my little boy being 5 this year. Everything is on hold, until things get even worse and I lose her completely.

I had reki yesterday though and although I don’t really believe in things like that, it did me good. I recommend it to see if it makes you feel a bit lighter emotionally too. That and yoga, or a very big glass of wine!

Anyone else got tips of simple things that help?

Ann xx

Hi Ann

Your mum sounds like an amazingly strong lady. It’s a positive that she has rallied round this week but yes can totally understand the exhaustion you must be feeling having to manage it all and the stress that goes with it. I am sure the wedding ring will turn up when you are not looking for it. It cannot be far away.

Your little boy has an amazing mum and you will make it up to him with future birthdays and events. Everything is put on hold because none of us can predict what is going to happen next. You can only do your best Ann so don’t beat yourself up.

I belong to a spiritual church and yes I know all about Reiki, I did some training in it and also received it. It’s amazing! I am thinking when the weather gets better of taking up yoga or pilates as both are very therapeutic both physically and mentally. My way of relaxing and de-stressing is walking. I love being outdoors with my dog and getting some fresh air and being amongst nature (away too from people). In the winter when I am shut in I used to do jig saw’s as again find it relaxing but dad loved doing them too, so avoided them this winter.

I have recorded lots of drama’s and nature programmes on TV as this also helps me to take my mind away from things.

I am hoping to go to the Isle of Wight in June for a break, I love it there but again it will be bittersweet because I took dad there last July 5 mths before he died so it was his last holiday (little did we know) but I have some really happy memories of that holiday because dad was relaxed, happy and carefree and we spent such quality time together. I am hoping it will bring the good memories as opposed to the sadness I am experiencing now.

Keep your chin up Ann, you are doing so well and your dad would be so proud of you and one day you will look back and be so proud of yourself that you were there every step of the way with your mum

xxx

Hi All,
Thanks Lyn for the message very thoughtful of you, xx.

Well I’m doing ok, just been working and had a few evenings to work and then not felt overly sociable in any area of life. Just finding I’m goinv from week to week but with no real purpose.

Hope you’re feeling a bit better now Lyn & Caroline. Keep going, we all will I know but just hits you every now and then I know.

Ann you are amazing to be coping so well you really are. So much pressure on you right now. Sorry to hear the way in which your dad passed. Must have been very scary but at least you made it there in time as sad as it was. You will cope with life after your Mum- youve already been through it once and survived but it just doesn’t seem real that I’m writing it or I’ve just gone through it and I just feel so sad in my heart for you knowing how terribly sad it all is. Especially the horrible waiting game. Fingers crossed your Mum is comfortable and you’re coping as well as you can.

I saw an ambulance racing up the main road today and instantly thought ‘mum’ & Then thought no it won’t be. I can’t say I miss that feeling or living of a knife edge 24/7 and worrying every time the phone went that we’d be back in hospital. I miss her so much though but can’t hekp but wonder why I’m not in floods of tears. I cry every night but not like I thought I would. I feel guilty that I’m not. I have a sneaky feeling that coping right now is going to come back at me when I turn 40, that’s my next fear & im carrying out my mums last wish in August and then it’s my birthday 9 months to the day Mum died so I really think it’s goong to hit me like hell then.

Anyway, I hope you are all as ok as possible in these traumatic days, weeks, months and years.

Looking forward to talking to my mums oldest friend tomorrow night, she’s been amazing. Lives abroad but has been a rock.

Xx

Hi Lucy

Good to hear you are coping and I understand getting by week by week with no purpose, I feel the same.

I am up and down and don’t know how I am going to be from one day to the next and I try not to think about it and just go with the flow.

I am going through a phase of less tears but more and more sadness. The reality is sinking in that I will never see dad again and I am trying to adjust to that but finding it incredibly hard to do.

I am feeling dad’s presence more now and this is a positive.

Had a week off due to the allergic reaction I had to the antibiotic I took but back at work tomorrow and feels like back to square one with work again but in a way will be glad to be back as it’s an anchor I need to keep me stable.

The weather forecast is bad for this week so dreading it and call be glad to see the back of this awful winter, in more ways than one.

Hope everyone is doing ok

Love
Lyn
xxx

Hi Lyn & all,
Hope you’re all ok and you’re feeling better Lyn? No more allergic reactions I hope?

Well the snow has brought a welcome break from the long drive to work for the past two days and I’m now officially snowed in! Got 9 inches of the white stuff outside! Only trouble is being stuck in is depressing. I tried to go for a small walk at lunchtime and slipped over landing right on my bum! Honestly!

I thought earlier if Mum was here now I’d be worrying like mad about her and if she was ok and if anything happened would I be able to get to hers or what if she went into hospital etc.

Also feeling a bit peed off with so called friends. All bar one have fallen by the wayside. Shouldn’t expect anything else I suppose. I just feel pretty on my own with everything. Anyone else feel the same?

Right I must go to bed I’m starting to nod off. On a pulse note I’ve started exercising again, first time in two years.

X

Hi Lucy,

Oh dear re-falling over - hope you are ok.

I had to quickly reply as your comment about how much we would all be worrying about our parents crossed my mind today. Odd how,things hit you.

I hope you get unsnowed in (lol) soon. Must go and let the dogs out into the cold.

Hugs,

Caroline
xxx

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Hi Lucy and Lynn and Caroline
Just to let you know that the snow seemed to remind me too of how much I would have been worrying about mum in the cold weather. So sad not having her to worry about.
Marigold
XXX

Hi Lucy

Just wanted to pass on my best wishes to your bum! Having time on your hands does make everything hard and it looks like the snow is here for a bit longer. Have you considered making a snowman? Only half joking, why not! Something nice to look at and cheer you up.

Thank you for your previous post too. The waiting game is awful as I’ve already lost my real mum. Things have come to a head this week and my mum desperately wants to go into a home where she would have a nurse with her 24hrs a day…a new chapter begins. She is very adamant so the decision has been made for me after 9 months caring for her. I feel like a failure but I also feel relief I guess as I really will pop if I keep this up looking after her, my work and my 5 year old.

Take care and also to everyone else on here. Keep warm and rather than a glass of wine I will raise a nice warm cup of tea to us all today.

Brrrr
Ann x

Hi Lucy

I am feeling better now thank you. Refused to take the other alternative antibiotics as can’t risk going through that again. Especially not at the moment. I hate being ill and I always use to turn to dad for some TLC.

I have now finished my phased back return to work and back to working from home from yesterday but strangely I miss seeing my colleagues as it’s very isolating at home, it also reminds me how dad used to pop round everyday in my lunch break. When I went into my office at home the first thing that hit me, was I have a wooden calendar block and I hadn’t changed the date it was still showing 14 Nov 2017 the day dad was admitted to hospital for his final journey. It was like a kick in the stomach.

I too am snowed in and guess all of us will be by the weekend.

I will never forget this winter for the rest of my life and I just want it over with.

I am not experiencing that deep pain like at the beginning but the sadness is overwhelming…

I too feel on my own with everything as support just drops off and people expect you to be back to ‘normal’ I just retreat it to my own world where I don’t feel the need to pretend everything is ok.

Hope everyone is doing ok and stay safe and warm this weekend

Love
Lyn
xxx

Ah, thank you all.

Can’t believe we were thinking the same things Caroline & Marigold. I don’t miss the worry as it was hell but I’d do anything to have mum back and I’d go through it all again. I feel bad saying I don’t miss the worry though like I’d rather not have her here and I would more than anything but that gut wrenching fear and worry was hell and I’ve only now realise how horrible that feeling was. I knew it was horrible then but I kept going.

Hope you’re doing ok Ann, I’m relieved to hear of your Mum’s decision, you’ve clearly been the caring daughter she needed but I think they do know when the time is coming. My mum was walking and talking but when she went in to hospital after about 4 days she suddenly started shaking and just said to me - she knew this was it. God knows how I kept going but I did as she then needed me more than ever and she’d tried to get the staff to ring me as she wanted me there. They didn’t ring but from the day before I’d decided to go in each day at 9.30am and stayed until 8pm. you know That next day when she woke up and saw me sitting there was wonderful but sad. She said how long have you been here I said about half an hour and she was so pleased. I suppose what I’m saying is that you know what’s coming will be a nightmare but somehow you will manage and you will be so pleased with yourself in terms of having no regrets and I’m sure your mum knows everything you have done and everything you will do. I really feel for you right now to the point of tears. A friend of mine who’s only 25 helped me so much in the last 10 days of mums life as she’d been through it and I remember her saying to me exactly what I’ve said to you, just how she knew what was coming and how devastated she felt for me. Can’t believe I’m now the one saying it. Most of the time I’m ok and that terrible ‘I need to talk to mum’ is there but I now accept that that won’t ever happen again. Keep going Ann, we are all with you and here for you lovely. xx

Well I’ve had three lorries stuck outside here today! Another day working from home tomorrow.

Glad you’re better Lyn and I know what you mean about working from home. The other week I just wanted to be at home away from everyone but this week I feel I am better in an office with some other people around me as I have more social company. Never thought I’d say that but at the moment it’s probably what I need. I’ve got some time off in lieu coming up and a small trip away so I’m really getting back into work. My confidence has taken a knock though and I just am not as confident as I was prior to being off. Hopefully that will come back again.

Anyway hope you’re all safe and warm and thanks for bearing with me as I’ve just not felt quite right the past couple of weeks, I suppose it’s because I just feel let down.

xx

Hi Marigold the worrying was part of the immense love we had for them and I too feel the sadness of not having that worry which was how I expressed and gave my love unconditionally to my dad when he most needed me.

It is the most wonderful gift you can give them when they have looked after you all their life and it is also a time when they know their love was fully reciprocated.

xxxx

Hi Ann,

I am just trying to catch up with all the posts …

Please never feel like a failure because your mum needs 24 hour nursing care. None of this is your fault and you have been such a magnificent carer to your mum for the 9 months - hiw you have coped is beyond me and I truly admire you for doing this for so long. The fact that the decision has been made for you is a positive in many ways but painful nonetheless.

There will be some comfort knowing that having a nurse with your mum all the time and some time for you to get some rest. My mum went into a nursing home - broke my heart at the time but looking back she was well looked after and had nursing care 24/7 with no delay in a nurse getting to her. I also found that I could discuss mum’s condition, the possible changes and how best to ensure she never suffered. She had chronic kidney disease and I found that the nursing home staff made me feel more comfident that when the time came she would have the right medication and care. I got to to know some of the carers and most of the nursing staff and they were very supportive and always made time to answer my questions.

As Mum approached end of life the staff gently made me aware and suggested things that I needed to consider - friends to visit, meeting mum’s spiritual needs, and so on.

I hope that your Mum settles ok when she does move and try to see it as a positive as it probably is the best option for your darling Mum now.

Take care - I live in Lincolnshire and the county is much at a standstill at the moment so getting a bit stir crazy here. Hubby is a police officer going on duty at 11pm tonight - rather him than me!!

Sending hugs and love,

Caroline
xxx

Good evening everyone,

I have not had a chance to post for a few days due to various things so trying to catch up !

Firstly, I live in the north of Lincolnshire so we are pretty well snowed in! I have been working from home due to the weather but poor hubby has to get to work as he is a police officer - he has to rescue all of those that went out despite the warnings not to travel.

Today was meant to be the day that my Pandora-style glass bead with mum’s ashes in would arrive - needless to say, it did not make it. I had built myself up a little, wondering how it will make me feel when I hold it for the first time knowing that mum’s actual ashes are within it. So, will have to wait and see when they plan to re-deliver … feeling happy and sad all at the same time.

I was watching the news today about carers battling through the snow to get to the elderly to look after them and get food to them. It made me think about how I would feel if Mum was still alive and at home - like you have all said, the worry was always just part of caring and loving her. I remember saying to hubby when Mum passed away that my reason for being had gone in a flash - I sort of still feel like that even now.

Oh well, onwards we keep going … I hope everyone is safe, warm and well as the country grinds to a halt!

Take care,

Caroline xxx

Hi Lucy and Caroline

I can’t thank you both enough for your kind words today. While friends and mother in laws say things like “I’m here for you”… the people on this forum actually are!

I’ve just had such an awful day. The care home I looked round was good but i was still such an emotional wreck. The matron had to usher me into a room as I was blocking the entrance sobbing as soon as I walked in. Then Marie curie were ment to be with my mum tonight but cancelled… I got to my mum’s at 7am and up until 10 minutes ago thought I was going to have to care for her all night and tomorrow too as she was insisting I would do it rather than a carer as it wasn’t fair on the carer (?)

This all came to a head with me sobbing and shaking on the floor saying I just can’t do it all. My son told me he didn’t see me anymore yesterday so I am officially in breakdown territory now and need my mum to be looked after professionally from now on so I can be her daughter briefly again. I have only had one full day off in 9 months so far.

I can imagine so clearly my dad’s wonderful voice saying “enough is enough”. It is his voice that is making the tears obscure my screen now as during the last 9 month nightmare I haven’t had time to grieve for him and I know I am biased but he really was my hero and an exceptional gentleman who deserves to be grieved for fully. I was always a Daddy’s girl. I miss him so so much. I also already miss my mum. The cancer in her brain has really changed her personality now and it is simply cruel and heartbreaking to watch.

Sorry. No words of wisdom tonight, just a breakdown that has been coming for a while. Maybe this storm has set me off?

Thank you for being there everyone on here in your homes/ igloos up and down the UK listening to my mental cracks as they unfold. Stay warm and safe and as lovely as ever please. Xx

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Dear Ann
I was so sorry to read your post. Believe me, I know how you feel. We had a night six months before my mum died when we were waiting for the out of hours doctor to come. I just broke down completely and wanted to walk out of the house and leave it all behind. Just as well there was nowhere for me to go. After this I got anti-depressants from my GP and these have been keeping me going every since.

I have no words of wisdom for you. It’s unbearable but you just have to bear it all the same. But don’t ever feel guilty or feel you haven’t done enough. The fact that you have reached this point shows just how completely emotionally, mentally and physically drained you are. I tried to do too much and ended up taking all my pent-up frustration and rage out on my poor mum. With hindsight I can see that I was wrong to try to be super-woman. Once you get your mum’s professional care sorted out you will be much more of an emotional support to her.

You’ve had a bit of a crisis today but life will return to its usual routine misery that you’ve probably now learned to cope with. I’m afraid things have reached a stage for you where you just lurch from crisis to crisis. I will say a prayer for you and one for your mum too.

Hugs and kisses
Marigold
XXX

Thank you Marigold so much for your honesty in your reply.

Knowing that such caring and sensitive people like you all, have been through similar things is such a help.

I know I am a good person so just have to start looking after myself more so that i can be there properly for my mum.

To top yesterday off, there was a power cut at my mum’s so a panic over her air mattress. I think I will remember the snow storm of 2018 forever…

Stay safe and warm everyone.

Ann xx

Hi Ann

Sending you a much deserved hug. Hope today has been a bit more bearable. You have been amazingly strong and brave and the stress you have been under is bound to take it"s toll. There is only so much anyone can take both physically and mentally. You need some respite from it all and you have made the right decision for you, your mum and your son.

Hopefully now the decision has been made you can breathe a bit more knowing that you have done all that you can.

Snowed in here and working from home in my pink fluffy onesie

Love
Lyn
xx

Hi Lyn

Thank you so much for your support too. I do feel more calm today. I have to look after myself in order to look after my mum.

They are coming from the good nursing home on Monday to meet my mum so I am going to try to go with the flow a bit more this weekend.

Take care everyone.

Ann xx

Good morning Ann,

Hopefully when the nursing home staff have met your mum you will feel more positive about the whole situation. It is so very hard to know what to do for the best but your mum has made the decision so please remember that. She may feel insecure and vulnerable being at home when she is so poorly.

You will have a chance to ask all the questions that you want answers to. The staff were pretty good where mum was but I did keep them on their toes! I suppose that because I lived at a distance it was all done by phone and email which is not as good as face to face.

As you say, you must try to look after yourself too. When caring for someone who has complex needs we tend to just put our shoulders into it and push on. Everything is stressful and our body runs on adrenaline which, in itself, is tiring. The exhaustion is hard to explain to those who have not been through it. You have you family too. My brother found that once mum went into the home he did not have to worry about getting to see her by certain times, etc - he bore the brunt of the day to day for several months.

Sending you hugs and much love. We are all here if you need to chat.

Caroline
Xxx

Mother’s Day

Hi all,

I am struggling with the whole concept of Mother’s Day at the moment. Every year I challenged myself to get the very best card (words wise) that I could find - Mum kept every single one and I now have them with me. Last year mum was in hospital on Mother’s Day after her kidney failure incident but was not herself. Looking back it was almost funny at the time - I will try to explain that in a minute - but this year I just feel bereft without her.

Last year mum was at the brink of passing but defied the odds and fought back. She was treated intensively and this affected her mental capacity although she did not have dememtia. On Mother’s Day I drove over with my son to give mum her card and presents - mum always loved her cards and read them carefully. On that day she thought that she had to pass a test to get out of hospital and that test involved reading the cards out loud. I had brought her some nice perfume - mum was always polite even if she did not like or want something - and I asked if she liked it to which she replied ‘it’s ok I suppose’ ! I had not realised that the impact of the brain of the trauma of being so ill destroys social inhibitors!

From that day on mum did improve a bit but we never really had mum back fully again. So, my memories of Mother’s Day are not good ones at the moment. It was almost a turning point in the journey to losing her for good and that makes me sad.

However, I am a mum too so I feel I should not feel like this. Life is like a relay race with each generation handing over the baton to the next one when they pass. Therefore it is my responsibility to carry on the tradition of celebrating Mother’s Day but I just don’t feel like it!

All the adverts on the tv and the online reminders are not helping but then I sometimes feel I am just wallowing in self-pity and should stop thinking like this.

Grrrr so frustrating…

Caroline
Xxx