When will it end?

whiteoleander

Registered User
Apr 11, 2010
13
0
Had a terrible week, mum who is 62 and in the final stages of alzheimers in hospital for 2nd time in a fortnight with urinary sepsis. Said my good byes on the weekend and prepared myself for the end. today the anti biotics have kicked in and she is opening her eyes. Struggling to come to terms with this as now she is fully bedbound unable to speak or recognise us and her swallow has been deteriorating for some time. I am not sure i can be happy she has made this 'recovery' as while watching her so ill with the infection was heartbreaking, I cant bare another day of seeing her with this awful illness. As a family we have agreed that the only medical input from now on is going to be palliative but Im not sure how many times I can say goodbye only for it to be premature.
Has anyone else experienced this kind of limbo when you just dont know when its all going to end?
I love my mum, but I lost her a long time ago and cannot bare to see her going through such an indignity.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,445
0
Kent
I`m so sorry about this, whiteoleander.
You might not want to hear this but as your dear mum is so young she will probably be quite strong physically and recover from all these setbacks.
It is so hard for you.
 

DeborahBlythe

Registered User
Dec 1, 2006
9,222
0
Hold her hand, Whiteoleander. If she is going, you will be glad you did. If she is staying, she will be glad you do. Kind regards.
 

ringo

Registered User
Apr 15, 2010
49
0
staffordshire
This as been my situation for the last 18 months! recently took the decision no more anti-biotics after my dad had another turn a few weeks ago, we were all by his bedside again being told he wouldn't pull through (4th time) and he has bounced back yet again.

I feel exactly like you I want him to stop fighting and give in this is so cruel I dont know how much more I can take I feel worse now than in the beginning.

Thinking of you
 

PostTenebrasLux

Registered User
Mar 16, 2010
768
0
London & Oxford
Sending you love and support WhiteOleander,
You are being sorely tested but also on a dummy run of a new experience, a new life without your mother. It is as if she is test flighting you for the big day so that when it comes, you'll know how to continue.
You have said your goodbyes - from now on, each time together is a gift from her to you - she will go when she feels you are both ready.
Whisper in her ear that you love her, that you'll be fine and that you will be responsible for yourself and look out for your family. Perhaps she wants to hear that you'll be in charge of the other relatives and that you will assume her responsibilities on her behalf.
The pecking order is being changed and she can only relinquish her position if she feels that a suitable replacement will take over.
Thinking of you and sending you my prayers and wishes of strength and courage.
Martina
 

Jo1958

Registered User
Mar 31, 2010
3,724
0
Yorkshire
Whiteoleander, hello
I'm so very sorry you and your family are going through this emotional rollercoater, we had it for a while with my father and it's very draining and hard on everyone. Holding you mum's hand sound like wonderful advice from Deborah. Keep strong.
Kind regards, Jo
 

larivy

Registered User
Apr 19, 2009
5,225
0
70
essex
sending you all my love at this hard time i had this with my dad i told him we were going to be fine and that he could go when he was ready like Deborah said i held his hand and just let him know i was there my thoughts are with you love Larivy
 

florence43

Registered User
Jul 1, 2009
1,484
0
London
We're also sharing the same experience. It could have been MY post, word for word!

Just over a week ago (mum's 3rd week in hospital), they told me to prepare for the worst. I cried, I ached, I despaired. I suppose it was shock. All seemed a bit sudden. But I got my head around it very quickly & went into coping mode.

Last year (June) we were told dad only had 12 weeks to live, so we're not unfamiliar with this, but I'm still grieving for him, so my heart's a little overloaded with sadness right now. However...I cope by organising. I started getting mum's financial paperwork all filed. It was piled in different categories, and I nearly missed having dinner...I was so immersed in papers! I was thinking about her funeral, what wonderful things I would write about her; would my husband read it out again (he did this for dad); would it be the same people attending; what would we do with the cat; blimey, we'll need at least 10 skips to clear the house; would she just slip away and....would I be relieved? It's the one thing I can't organise: my feelings.

With dad, we were relieved that he was out of pain (cancer) and that the man existing within his frail body was released so saying goodbye to that physical figure was made easier (not easy) but easier because of the awful build-up and limbo in which we all lived. But it was 5 months or so later that the real grief hit me. I'd forgotten the man we'd let go and remembered I hadn't got a dad anymore. Could only remember him before his illness.

I'm ready for this with mum.

But she's been back at home now for a week, and although it looks almost certain she'll have to go to a nursing home, I can't quite work out how I feel. It's relief to a point (that we're not arranging a funeral right now) but a strange ... can't think of the right word (irritation is not it, but along those lines) that we will still have to face it soon.

We had a lot of practice with dad. We'd tell him off for literally using up his 9 lives! Acute stroke, from which he shouldn't survive...he did..emergency op for burst appendix and perforated bowel...50% chance he'll pull through...he did! The amount of chest infections and UTIs he suffered were ridiculous, but I suppose he just wasn't ready to go. He was so worried about leaving mum. He even went into the hospice and we were counting days, but the rascal only got himself in a position to come home again, then got a chest infection...but this time the chest infection would be his last. When we got the call to say we had to get there, we felt it was another false alarm. But it wasn't.

It was hard to believe it had actually happened. We'd had so many near misses.

So I suppose I'm saying that the feeling of wanting it over is human nature. It's not selfish. Because all in all, when the end is coming, the limbo is so painful that all sorts of emotions are felt. We prepare, it doesn't happen, we think it's ok, oh, another downturn, prepare again, hope it's not, hope it is, oh when will life stop messing with us all?

Mum must be utterly miserable to be so poorly, so let her go...but I don't want my mum to die...but I've already lost my mum...I want her to keep what dignity is left...let her go...but just one more day...I'm ready to lose her...oh, she's improving...no, just a blip...here we go again.

Just know I'll be thinking of you. I know exactly what you mean.

Annie x x x x
 

florence43

Registered User
Jul 1, 2009
1,484
0
London
By the way, my mum is also very young. Just 66. She is completely dependent, cannot feed herself, drink, wash herself. Can't do anything for herself.

No idea what relationship you have with her, but I really do know what you're feeling...

Annie

x x x x
 

katherine

Registered User
Sep 5, 2006
57
0
Hi
I have been through the same with my mum. It is exhausting. We have now told the doctors we don't want them to give her antibiotics. It's tough but I just feel why would we keep my mum alive with antibiotics. For what? It seems crazy. But i find it hard because i keep having to explain myself and this decision. The general knee jerk reaction seems to be to always to keep someone alive no matter what but I think this is wrong. We should be able to let someone go. Keep strong and I hope you get some peace soon.
Love K x
 

whiteoleander

Registered User
Apr 11, 2010
13
0
thankyou all for your lovely messages,
The recovery mum made with the antibiotics was only temporary and sadly she passed away last week.
We were very lucky as a family we all agreed that the best optin was to get mum back to the Nursing home witha palliative care package.
It was a stuggle to get her back but one well worth it in the end as she died in comfortable surroundings around people who really cared for her ( she had been in the nursing home for over 2 years and the staff genuinely loved her)
I was there at the end and I was able to take the advice given to me here say my good byes and hold her hand.
I miss my mum but Ive been missing her and grieving for her for years now. It was time to let go. Prior to Alzheimers my mum was a beautiful elegant genorous person, now i can finally remember her that way and evreything Ive ever done and will ever do is because I had such a wondeful mother.
I'll always think about all of you and your struggles with dementia.
Stay strong and never stop fighting for the best care and life for your loved ones and yourselves.
White oleander xxx
 

nicoise

Registered User
Jun 29, 2010
1,806
0
Sorry to hear your news, but glad it was possible to arrange things to be so peaceful for you all.

xxx
 

emmamac

Registered User
Sep 15, 2009
94
0
Had only read the first few posts before replying as below.....

So very sorry to read on and hear about the loss of your mum BUT - also know that there must have been a real sense of relief that her suffering (and your journey with her) was over. So forgive the premature posting.......my thoughts are with you xxx

absolutely understand as at exactly this point with my dad. He was admitted yet again on Thursday night with a UTI and septicaemia. Said our goodbyes again and once more IV fluids and antibiotics have draggedhim back to a living hell. He can't communicate, has limb contracture, is unable to move around the bed now, hardly eats or drinks. Had the same conversation with the registrar today with my mum, but felt I was somehow signing his death warrant. That said, the doc said this will certainly happen again and I don't know how much more we can take - its pure hell watching him going through this.

Awful, horrible, hateful disease. Thoughts and prayers with you - you are most certainly not alone!
x
 
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sad nell

Registered User
Mar 21, 2008
3,190
0
bradford west yorkshire
So sorry your mum has died but pleased you were able to be with her and hold her hand and she is now at peace free from this horrible illness, so glad you have lovely memories to ease your pain, she sounded to be a special lady love to all your family Pam
 

florence43

Registered User
Jul 1, 2009
1,484
0
London
Sorry

Dear White oleander,

I'm sorry it's taken so long to post, and I'm so, so sorry for your loss. I found your post very moving. It was full of love, and your peaceful description of your new frame of mind really touched me.

I was suddenly reminded that I, too, am everything my mum made me and that all the good in me is because of my wonderful mum. Thank you from the bottom of my heart for re-opening my eyes, and letting me see my mum again.

Love,