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It's over, mum is free of dementia, and so am I

Marnie63

Registered User
Dec 26, 2015
1,629
Hampshire
I'm going to leave my 'dreadful couple of days' thread (it actually ended up being six dreadful days) and skip to here, but realise now that we skipped the 'end of life care' section! Actually we didn't, but it was so brief, only three days in hospital and not all of that was end of life care, though what there was, was excellent.

Firstly, thank you to the Alzheimer's Society, Talking Point, and all the lovely people on it, for helping me get through the dementia experience with my mum. It was long, it was hard, but it would have been considerably harder had I not had the help of kind people on TP, and the occasional support from the helpline. Thank you, thank you, what an excellent place to be when dementia is all around you.

Thank you for everyone's kind words on the other thread where I described mum's final decline and death (on Monday afternoon). I was reading your replies while I was sitting in that lonely side room with mum at the hospital, and although staff kept me fed, watered and hugged, you all helped me in spirit too, particularly when you all paced the corridors with me (!).

I am still waiting for paperwork to register mum's death. I suspect she may have to stay in the hospital until Monday now, which for some reason I find very disappointing. It seems bizarre that only one doctor can sign it, and she's constantly too busy to come down to do it but … It will happen one day and mum will be off round the M25, in a van with the FDs, and then waiting with them until the funeral, which isn't until mid October for several reasons. I will be up and down, visiting the FD, popping in to see her for as long as I can, and trying to find a suitable venue for the wake.

I feel surprisingly unaffected at the moment, and I'm actually quite astonished. I have cried for nearly three years over mum's demise, intensely for three days in hospital when it became clear she was nearing death, and then again when she died, but now I feel, well, lighter, relieved. Relieved that she no longer feels mental anguish or physical pain and, yes, mighty relieved that it's over for me and hopefully before my own heath was seriously affected. But, I feel like it is going to take me a few weeks to get back to my normal self, maybe even longer, I feel shaky, tired, disoriented. Sleep comes at night time, but it's not a calm sleep.

I almost feel guilty that I'm not bawling my eyes out more, but maybe the anticipatory grief went some way to helping me part through the grief process already. I'm sure I will cry loads at the funeral!

I am pleased to be here, I thought I had a few more years of it to go. I'm mighty relieved mum didn't last to end stage and died at a time when she was still talking, eating and wanting to be near me. She died knowing who I was, and what I'd done for her. But most of all I'm pleased I managed to keep her at home, until the very end, or almost. It was good that we were in the hospital as all help was on hand, I don't believe it would have been such a 'good' experience at home.

Bless you all for your kindness and support.
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,914
England
My condolences @Marnie63 for the loss of your Mum. There really are so many mixed emotions at this time and how we deal with them is very different from each other. All the arranging and paperwork kept me going.

I’m sure all members will be pleased that you got so much from the forum, we are a unique forum and many of us would have gone under without the support and help of other members.

Take care of yourself and know you did a wonderful job in looking after your Mum.
 

marionq

Registered User
Apr 24, 2013
6,070
Scotland
Marnie you probably did so much grieving for your living Mum that the well is dry now. I certainly feel that way. I am looking after a husband who is occupying the body of someone who thought, acted and felt quite differently. It’s a strange experience isn’t it. My husband is here yet he isn’t here. I don’t know how I will mourn the loss of someone I lost years ago.

What an illness! I am happy for you now that you have another chance to live a little.

Best wishes.
 

witts1973

Registered User
Jun 20, 2018
731
Leamington Spa
Marnie I'm sorry to hear that you have lost your mum,I know that you did so much for your mum,and thanks so much for your help and advice that you shared on the forum.

Best wishes for the future x
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,343
Nottinghamshire
When my mum died I didn't cry much, except at the funeral - there is such a finality to that ceremony it always breaks my heart.

My mum was worse than yours but still knew us at the end. I, too, am grateful for that. You've done a lot of grieving on this journey. Now you are free take time to recover.

All the best for the future.
 

canary

Registered User
Feb 25, 2014
12,183
South coast
I think the time between death and funeral is a strange one. There seems to be so many things to organise and you still somehow have to hold it together. I felt very numb for a long time after mum died, but the grieving came. Dont worry about how or when it happens, you will grieve in your own time/way.
(((((hugs)))))
 

hilaryd

Registered User
May 28, 2017
84
Hope all gets sorted soon Marnie. It's seven months since my mum died, and I would say that grieving takes many forms - crying is just one of them - and is different for everyone, and depends on what's gone before. In my experience, everything just feels like it will never be quite the same again - but it is a big relief from feeling exhausted and battered. Take care xxx
 

Soobee

Registered User
Aug 22, 2009
2,734
South
Marnie, my condolences to you. Once you feel everything is all planned for the goodbye, then it's time to be kind to yourself.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Marnie, I am glad to see your post today. I can only hope the paperwork gets sorted as soon as possible so you can move to the next step.

Grief is such an odd thing, and so different for each of us each time. I have no doubt that the anticipatory grief that comes with this wretched illness, has had an effect; what that may be, is difficult to say.

Your posts are very helpful for me and I want to be sure to thank you for being willing, and taking the time, to share so much with us. I don't know what any of us would do without TP.

Sending ((((((((((((hugs))))))))))).
 

Marnie63

Registered User
Dec 26, 2015
1,629
Hampshire
Thank you all again. I finally got the piece of paper issued from the hospital yesterday so will be off to register mum's death this morning. It hit me hard to see the words 'death' all over the document and of course to read what they had written. It's quite stark somehow to see it literally in black and white. I have also booked an appointment this morning to see mum at the hospital before the FDs come to collect her. I've been told she looks "OK, but very pale", so am bracing myself, but I do want to see her and will try to continue doing so until I no longer can.

Yesterday I met up with friends who are over from abroad and who had already arranged to come to the area for a night to meet with me. We had afternoon tea and their hotel, mooched around a bit in their room chatting about this and that (my friend had a similar relationship with her mother, who also lived to a grand age) and then somehow managed to fit in a light dinner. At times it felt weird to be out 'enjoying myself', and we joked about how our mothers might be looking down and tutting about the jollity of it all!

I felt dreadful again when I got into bed at home, still kind of shaky, and just couldn't settle. I think after today I am going to spend the weekend taking it a lot easier, long lie ins and pottering, with perhaps a little doze here and there. I think because it has continued to be a busy week with arrangements and phone calls, I am probably not taking enough time out to rest.

So far so good though, I think I am OK. I hope!
 

Izzy

Volunteer Moderator
Aug 31, 2003
61,787
69
Dundee
It's so good you had time with your frien. Especially as you have that shared experience.

Time out sounds like a good move. The roller coaster of bereavement takes so much out of you. Both physically and emotionally.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,088
Kent
Try to ease yourself into it @Marnie63. There are no rules. You have spent a long time caring for your mother and now is the time to care for yourself.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,343
Nottinghamshire
It's a weird feeling I find after a loved one has passed. So many "firsts" to go through without that special person there. Look after yourself @Marnie63 and take time to experience bereavement in your own way.
 

Marnie63

Registered User
Dec 26, 2015
1,629
Hampshire
I went to see mum in the Viewing Suite at the hospital today. She looked fine, in fact she looked better than she had just after passing. There was colour in her face and she had an expression of mild amusement on her face! It was a bit freaky just before they opened the door, as I'd never done anything like that before at a hospital, but it was fine. Nothing to be afraid of, just my mum lying in a peaceful state, no more dementia, no more pain. I'm glad I went, I was wondering what she looked like now and it was bothering me. Now I know.
 

canary

Registered User
Feb 25, 2014
12,183
South coast
(((((((((((((((((((hugs))))))))))))))))))) Marnie

Im glad your mind has been put at rest. I viewed mum before her funeral too and she looked peaceful too. I was glad I went and Im pleased it has worked for you.
 

Marcelle123

Registered User
Nov 9, 2015
4,587
Yorkshire
So sorry to read your sad news, Marnie, and sending you sympathy and best wishes. xx

And, if you don't mind my saying, thank you for posting and sharing what you feel. I lost my Mum nine months ago, but I am still trying to come to terms with it all, and it is so helpful to read about others' experience.

Like you, I felt numb in the aftermath of Mum's passing. I wish I could have cried but I had to cope with the funeral and then the interment of Mum's ashes and getting probate sorted - I have five brothers and sisters.

Now it is all over, and I miss her more than ever.

Wishing you strength and solace. xx
 
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Marnie63

Registered User
Dec 26, 2015
1,629
Hampshire
I'm sure this can't be right though, that I feel OK? I have regular moments throughout the day when I 'crumble' and have a little weep, but mainly I'm OK. I'm waiting for the real grief to smack me in the face. Perhaps as time goes on it will. If this is it, then I'm grateful. I'm kind of hoping the effect will be gentle because of the trauma of the past three years. Maybe most of the crying is done? I have been rather busy though and tomorrow and Sunday will be the first quiet days I have after mum died on Monday. Let's see how they go!

It's oddly quiet in the house and I find myself still listening out for mum, even though I know she's not here.

Note to anyone who thinks they will be registering a death anytime in the near future - be careful about names and spelling. I registered mum's death in the name she was officially known as on passport, etc. However, we called her by a slightly different name, the only difference being the first letter of the name. This is how she was known by doctors, etc. So, when I delivered the 'green form' back to the hospital (this is the form the FD has to show to have the body released to them - but I had to leave it at the hospital as the FDs are coming across from another county to collect mum), the lady in the office picked up on the fact that the name on the form did not match the name on mum's wristband. Panic! She said that they would not release mum to the FDs if the names didn't match. I sorted it by clarifying everything in an email to them. Had a small panic though!
 
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Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Marnie, it's okay, there is no right or wrong when it comes to emotions and especially grief. What you feel in the moment is fine. That's not very eloquent, but I hope you get the idea. Please don't distress yourself with worrying over your reaction.

I'm glad you saw your mother and that it was helpful for you. Also good to know about the paperwork!

Sending lots of ((((((((((((hugs)))))))))))) your way.
 

try again

Registered User
Jun 21, 2018
270
My dad died a long time ago after a battle with cancer. For many years there were episodes when "this was it" and it wasn't. I mourned for so long during those years that his death was a mercy and I never grieved.
It's not the same as missing, and when someone has occupied your mind for so long you will feel lost.

Hugs to you.
 

Marnie63

Registered User
Dec 26, 2015
1,629
Hampshire
After a calmish weekend, I launched into arrangements yesterday. Left early for the place where mum will be buried, sorted most detail with the FDs, booked the flowers, booked the venue and visited the stonemason. Stone and kerbs will obviously need to be removed. When dad passed, mum was healthy and young--ish and for whatever reason we didn't think to leave space on the stone for mum's inscription. I have asked if they can somehow reuse the headstone bit. It seems they could grind the writing off, leave it matt, turn it around, and do a new inscription for both of them on the other side. But, apparently at some point it all becomes almost as expensive as buying a new stone and kerbs. So will have to see. I'd rather not pay thousands for that again, hopefully won't have to.

The FD has quoted a £100 estimate to put an obituary notice in the local paper. Really?! Probably not necessary, but thought it was fitting and maybe it will notify anyone who may have known mum.

Most of the equipment was collected today. I found it rather sad to see the wheelchair folded up on the van. That little wheelchair was a big part of our lives for the last year. Maybe I shouldn't have hurried the equipment collection, but what's the point of holding onto the stuff? It also means there's more room in the house, and I can start getting things back to normalish.

I have moments now where I get incredibly sad about the fact that I won't speak with mum again, or feel her warm touch. If I held out my arms to her while she was in bed, she would always hug me and give me a gentle kiss on the cheek. I'm so going to miss that. It really hurts that I will not have that physical contact with her again. The hugs and kisses should last me a lifetime, but the fact that they will happen no more twists at my insides now and again.

The rest of the week is fairly quiet, a friend popping in, but no other plans. I think I will take stock of paperwork and start focusing on numbers for the wake. I'm hoping for around 30/35. Some people who I have not yet been able to contact may or may not come. It's hard when you can't ask people to RSVP for a funeral - or can you?!

The FDs finally collect mum from the hospital tomorrow, so will have to check on progress. I await a call to say I can view her there, and I'll be up again. I have an offer of company for the first viewing at the FD, which I have gratefully accepted. It will be easier with someone else there.
 
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