Locked on Mum’s last 8 days

[Curly25]

So sadly mum passed away 6 weeks ago from vascular dementia. She like so many l’m reading about, experienced rapid decline during lockdown. From being able to go into town with my dad, go to cafes, meet me for lunch to a shell in 4 months. Fortunately dad was able to keep mum at home and until June cared for her on his own. As her condition deteriorated l managed to convince dad he needed support and amazingly once that call was made, help arrived with in a couple of hours. The carers however noticed mum was dehydrated and quite poorly which turned out to be COVID. She’d got this from a hospital visit a week earlier, prior to this they hadn’t left the house.
So amazingly mum got through COVID and after a 4 week stay in hospital with no contact we got her home, but such a shock as she was now bed bound and barely eating or drinking.
The hardest part was dad got little support from any medical professionals, she was just sent home and he at 84, had to get on with it, with assistance from 3 daily care visits. Any support was all about getting mum better, but clearly she wasn’t going to get any better. Dad tried desperately to get mum to eat and drink, but there was always the question for what purpose, she was clearly in final stages. We realised this was going to be a difficult period.

So then mum stopped drinking. I read and read, trying to find out how long, what are the signs, but as you all know there is no definite time line, just that it will end at some point, which is so so hard. I stayed with my dad during this time and called in my 3 brothers, one of which is a GP. Although good to have mum at home, as a family we were having to make all the decisions about care/help from professionals and l felt so out of control, thankfully my GP brother could make some medical decisions. None of the professionals visiting seemed to acknowledge mum was dying. It was only on the day she died that the district nurse came in and said mum could have what ever drugs we thought she needed. Other professionals had been conservative which l do understand, but difficult when your loved one is suffering in front of you.


The 8 days were awful, a roller coaster of “is today the day”. When we thought she couldn’t get any worse, she did. The groaning, the slowly slipping away into a deeper sleep, the difficulty managing her mucous, moistening her mouth, the sitting around waiting for her to die, the night vigils, the syringe driver beeping as we wait for the district nurse to arrive to administer more drugs, the shallow breathing and then finally the last breath, the body bag and my dad’s pain. So harrowing. Part of me thinks l wish l hadn’t witness the end, or all of the 8 days. One brother arrive 20 hrs before mum died, although l was cross because of the choices he’d made he hadn’t put mum first, now l envy him for not having the intrusive images which now dominate my mind, particularly at night. I feel locked into the images and so so difficult to shift.


I find it really difficult to talk about, but know l need to. I think my husband is fearful of the sadness. When l tried to talk to him he said let’s do this at the weekend, it was Monday! I’m trying to be kind to myself. I run which helps, as does yoga. I can’t hold any info so use lists and set a goal of achieving 2 things a day. My children are thankfully old enough to be helpful, but l feel guilty that l can’t offer much at this time. I know this is going to take time. Dad is doing well, though things have moved quite quickly and the family home is sold (not completed yet) and he has moved to Devon with one of my brothers. This means l can’t seem him more than maybe once a month when l’d been supporting him every weekend.

This has been much longer than l intended but once l started writing it felt good to do and helpful to read back. If anyone has any falling back to sleep tips, l’d appreciate it as really struggling.

Thank you for listening

 

[Grannie G]

Hello @Curly25

Please accept my condolences on the loss of your mum and thatit was such a long drawn out end of her life for you.

I`m glad it felt good for you to offload here and helpful for you to read back.

I doubt there is anyone who can make it better for you and perhaps this is why your husband wants to put off any discussion until the weekend. he probably has no idea how to help such raw grief.

When you can`t sleep, I find it best not to try. The more you try, the greater the tension builds up.

When I can`t sleep I try to accept it won`t happen and instead concentrate on my breathing. I count my breaths in and out for one, two three etc. Sometimes I get to fifty nine and am not sure if I`m at fifty nine or sixty nine so start again from the beginning. It might sound silly but while you are concentrating on your breathing you are relaxing your body and your mind.

I hope you consider giving it a try and hope it works for you.

 

[Cat27]

They will fade to be replaced by good memories. I had the same as you it’s so stressful. Wishing you strength.

 

[Izzy]

I’m so glad you have decided to share here @Curly25.

Grief is such an individual thing - everyone responds differently. Here you know you will always have someone to listen and to support You. I’m glad you found it helpful to do and read back.

Keep posting!

 

[May30]

The trauma of seeing someone in the last stages is awful and my heart goes out to you. I was like you and couldn't get the last image of my dad out of my head. I used it to beat myself up about how it all ended and almost made myself see it, wouldn't let myself forget. It is 4 and a half months since my dad died and the image is not at the forefront of my mind anymore. I've been spending time looking through his things and it's made me remember what he was like before he got ill. I have counselling once a month and my counsellor said my dad wouldn't want me to remember his life through focusing on his death. It has taken time and it still comes back but less often. I found it really difficult to get back to sleep so my husband bought me a Kindle with a back-light and reading helps me to fall asleep. The light doesn't keep me awake in the same way that a phone light does. Also herbal tea before bed has helped.

 

[Starting on a journey]

It will take time for those images to fade. They will seem like they are with you all the time and then one day you will remember happy times and then happy times will be at the forefront.
But the grief monster will return when you least expect it, so beware.
From the experience of losing my husband, (he died suddenly ,unexpectedly) I know that it can take some time. Seven weeks after his death my daughter got married , I was smiling in the photos but white as a sheet!!
Don’t expect too much of yourself. Maybe your husband can’t talk about it....when my father in law,and my dad died my husband was quiet and went to work as normal!!
Be kind to yourself, cry when you want, especially if no one is around...if you have a garden it’s a good place.
Go see your dad once a month, enjoy his company, show him a healthy happy daughter and it will mean so much to him. Over time you will be able to talk about mum to others. In the meantime just post here. Many of us have been through trauma and sharing it helps.
Your GP may be able to help. I saw mine with mum in January and mum blurted out what had happened and she was sympathetic but I guess it depends on who they are
Above all take care of yourself and then you can take care of your children

 

[glory69]

Long-time lurker, but could relate to your post which has brought me out of hiding! I went through the death of my mother from vascular dementia two weeks ago, and I too found witnessing the physical process of dying in the last days (even though I had read up and knew what to expect) very harrowing and traumatic. I recognise much of what you describe. I was even not very present on her final day, because I couldn’t take it anymore, which I remain rather conflicted over. The memories are extremely raw still and I have accepted counselling that was offered to me from the hospice at home people. I don’t know if counselling could also be an option ? Re. sleeping – I have discovered an appetite for listening to true crime podcasts in bed! I find them gripping enough to temporarily take my mind off ‘the other stuff’ and then the natural mental and physical exhaustion seems to take over and I fall asleep! I don’t know if you could find a similar subject matter that would interest and distract you? Wishing you much strength x

 

[Pete1]

Hi @Curly25, my condolences on your Mum's passing. I went through a similar situation with my Mum (and previously Dad) albeit in a Care Home, on end of life care, it is a an emotionally brutal experience to witness. I struggled with sleep, nightmares and also grieving - the dementia journey is often referred to as the long goodbye as we grieve throughout that process. Your post explains some of the dreadful recent major traumas which you and Dad have been through but I'm guessing there were many before. I was never a great believer in counselling, it isn't the panacea but it did help me. You can speak to your GP or you can commission privately if you so wish. It is a big step, but I think an important one if you have been through a traumatic experience that is affecting you deeply.

What I can say is that in my experience with counselling and just the continuation of life, over time those awful memories have (on the whole) been replaced by much more positive images of good times of the past. When you feel up to it go back and look at old family pictures of Mum and try to remember those good times, it may bring a tear to your eye but it will help you I'm sure.

I wish you all the best, stay strong. Keep posting on here.

 

[Jale]

Curly25 and glory 69 please accept my sincere condolences on your loss.

Time is a healer (or so the experts say) but I don't think we heal but we do get a little bit better at coping.
I have problems sleeping and always go to bed and read until I feel myself dropping off - sometimes it works other times not a chance.

Best wishes to you both

 

[canary]

When someone dies from dementia it can be very harrowing seeing all the physical changes. They also seem to hold on far longer than you would think possible and the twilight waiting for them to pass is almost unbearable.
When mum was in the final stages I remember thinking to myself, how is it possible that she is still breathing?

((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))) to @Curly25 and @glory69

 

[Canadian Joanne]

Although it can be so disturbing to see a loved one die, perhaps later on, when the memories of the death have been replaced by memories of your mother as she really was, you may find some comfort in the fact that you were there with her.

I was there when my mother died and it was a nine day passage. I always wanted to be there with her and am grateful that I was. My memories of her are now as she truly was. It does happen, it simply takes a long time.

 

[glory69]

Thank you @Jale and @canary xx

 

[Curly25]

Thank you so much for all your replies and l’m sorry for all your loses. To hear similar experiences and to know others understand, brings a sense of comfort. I wished l had reached out before, as this has been a lonely journey and such a cruel one.

Thank you for your sleep ideas, will definitely try some out, fingers crossed.

l’ve found that friends ask how is my dad, understandably, but not me and actually l think if they did l might be able to open up a little. I know grief isn’t a comfortable subject and unless you’ve experienced it, people don’t know how to react. Now on the other side l can see that and have been guilty of this.
Two friends are taking me away this weekend, so maybe an opportunity to talk a little. They have both experienced a loss so have some understanding of where l’m at.

It is all just so so painful and upsetting. I just want to cave in, but my children give me strength and l know mum wouldn’t want me to feel like this. She would be thinking that yes, it shows the love l have for her, but for goodness sake, life goes on, don’t waste any more time on me, look after your father and by the way “don’t forget your coat”- my brother wrote a poem for the funeral with this as the tittle, so mum.
Take care all.

 

[canary]

It is all just so so painful and upsetting. I just want to cave in, but my children give me strength and l know mum wouldn’t want me to feel like this. She would be thinking that yes, it shows the love l have for her, but for goodness sake, life goes on, don’t waste any more time on me,

Please dont bottle it up - grief has to come out one way or another. There is nothing wrong with caving in and crying until you have no tears left if thats what you need - it can be very therapeutic. The stiff upper lip can get you through difficult occasions, but dont keep it there all the time. Remembering and grieving is not a waste.