1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Ostrich63

    Ostrich63 Registered User

    Jul 9, 2018
    27
    Hello all.

    Looks like I am joining many of you; they say strength in numbers.

    Mom is at home here with myself and will stay here as long as its in her best interests. I have taken a career break from work 1 year to make sure she is "Pain free/comfortable/happy."

    My Mom was 86 in November and up until 21st August 2018 doing well bit confused (no diagnosis waiting 6 months doctor said but then we were overtaken by events)
    Also registered blind due to late onset dry macular degeneration, when we lost my Dad (2015) however since Oct 2017 started getting water infections (had 4 but none needed in stay at hospital 1 needed fluids as an GP referral she was also steadily reducing her eating. But mobile happy and still chatting away with neighbours and only using walking stick outside.

    On 21st August 2018 she went out for lunch with my sister and brother in law, came home and she said I will have an early night if you don't mind and went to bed that was the last time she got came downstairs. She had a water infection that cleared with oral antibiotics but she became delusional ; however we had a bad 4 weeks and then we had an improvement. That then became a downward spiral then a slight upturn you all know the way it goes sadly.

    In November the GP came out on a regular visit and came out with a statement which was life changing for all of us she informed us in the nicest way possible that Mom was dying she had changed colour (we now know is a sign) and at that point she had been sleeping 23 hours out of 24 and to be honest what the Doctor said was exactly as I now know my sister and I had been thinking. My brother was totally floored it never dawned on him I do not think. A "Just in case kit ordered and still here and forms filled in. District nurses asked to attend we were on the journey.


    Anyhow fast forward to now Mom is still in bed she gets up to use the toilet but that's it now straight back to bed not always sleeping however but does not really want conversation more than a few words and has lost weight due to hardly eating for a few months now down to about 7 stone (was in 2017 Nov 10 stone 6) eats a few bites of a sandwich, maybe if we are lucky a few bites of a French fancy or jam tart.

    We realise that she is not dying because she is not eating; but not eating because she is dying. Chest
    infection Christmas week (slight crackle no more) resolved with oral antibiotics 5 day course. Had Doctor out last week and she said had seen her worse but also seen her a lot better since August chest and water tests clear just weak and tired (remarkably so) her skin in thinning and we are trying to keep it okay. I found myself last night thinking "passing in your sleep now would break us but carrying on as you are will kill us"

    So here I am Mom is on no medication in no pain talking makes the odd joke but is tired tells us she has spoken by telephone (impossible no house phone connected for peace) to her brothers who are deceased and sisters also deceased. She knows who we all are but cannot seem to stay with us enough for a conversation now of linger than 5 minutes without eyes closing. No illness .

    So after that I join you all....waiting. Hello.
     
  2. garfield3

    garfield3 Registered User

    Jun 30, 2018
    170
    No one wants to join this club, we have too many members. :( :( Good luck with your journey. Welcome, though. A good supportive site.
     
  3. Ostrich63

    Ostrich63 Registered User

    Jul 9, 2018
    27
    Thank you have been watching/reading for a while just thought "hey post"
     
  4. KathrynAnne

    KathrynAnne Registered User

    Jun 6, 2018
    272
    Female
    South Yorkshire
    It’s definitely a club none of us want to be in but the support here is such a comfort xx
     
  5. Baby Bunty

    Baby Bunty Registered User

    Jan 24, 2018
    297
    Hi ..its an horridic spoil destroying journey..its been since March /april with us..mum weighing next to nothing..bed bound ..weighs 4 stone if that..but still having her ensure drinks..so days she hardly drinks..its beyond me how my dear mum is still here!..wishing you all peace and strenght..thorought out this journey..i now i wish mums would come to a gentle peaceful stop..xxxx
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,572
    Kent
    It was a good decision. It`s always best to post and receive the knowledge and understanding of where you are.
     
  7. Ostrich63

    Ostrich63 Registered User

    Jul 9, 2018
    27
    Hello all a downturn here on Wednesday Mom went into a deep sleep and was difficult to "wake fully" has slept since then hardly waking and has I would say cleared her bowel. She has refused to eat anything since Wednesday and then just 1/2 a Bakewell tart. Her drinking has been reduced also.

    Doctor came out today and said her blood pressure is low and her legs and slightly swollen, and she is tired beyond tired which we agree with) she also said if we need people to come and say Goodbye phone them. She said maybe a few days but a week if the no drinking continues. Mom is breathing but stops then restarts.

    No pain no discomfort just sleeping in her own bed, so we move to another stage.
     
  8. Baby Bunty

    Baby Bunty Registered User

    Jan 24, 2018
    297
    Thinking off you and your mum.xxx
     
  9. KathrynAnne

    KathrynAnne Registered User

    Jun 6, 2018
    272
    Female
    South Yorkshire
    Thinking of you @Ostrich63. I feel I am at a similar stage with my Mum. She sleeps nearly all the time and is eating and drinking very little. Thankfully she also seems to be very comfortable and I suppose that is all we can hope for at this stage.
     
  10. Theresalwaystomorrow

    Theresalwaystomorrow Registered User

    Dec 23, 2017
    345
    How sad, I really hate this disease.
    I am thinking of you all xx
    I also luv this site, informative and supportive beyond words
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    ((((((((((((Hugs)))))))))))))))))) @Ostrich63
    The stop start breathing sounds like Chayne Stokes breathing, which is a sign of the end. If it is this then she may not last more than 2 or 3 days

    You are into the last long vigil, this is a horrible twilight zone. She will still be able to hear you, even if she seems unresponsive as hearing is the last thing to go. Play her favourite music, read to her and talk to her. Make sure you say the important things to her - I love you, thank you, Im sorry and (if appropriate) I forgive you.
     
  12. Ostrich63

    Ostrich63 Registered User

    Jul 9, 2018
    27
    Thank you.
     
  13. Ostrich63

    Ostrich63 Registered User

    Jul 9, 2018
    27
    Yes you are right my sister said today (she spoke to the Doctor I was out with the dog the only break really) that Mom has had a lovely life and with the Grace of God she will have a peaceful ending. We have done our best and that's all anyone can ask or do. We love her to pieces but love her enough to hope she has a peaceful passing to my Dad who she misses with all her heart. I saw a picture or something once that showed a person(cartoon people not real) on their death bed and family around crying but the spirit of the person walking on to loved ones who had gone ahead and smiling at their meeting again. That keeps me going she is not leaving us just going to catch up with those we love who are slightly ahead.
     
  14. Ostrich63

    Ostrich63 Registered User

    Jul 9, 2018
    27
    Totally agree the information and snippets are life saving.
     
  15. Ostrich63

    Ostrich63 Registered User

    Jul 9, 2018
    27

    Yes the Doctor said that and I already thought that due to this site but the Doctor confirmed it.

    She smiled and then cried a little as Mom held her hands and said "cold hands warm heart but better to have both" and held the Doctors hands on her hot water bottle. My Mom is a gentle soul and we are thankful that has not been taken by this disease.
     
  16. KathrynAnne

    KathrynAnne Registered User

    Jun 6, 2018
    272
    Female
    South Yorkshire
    That’s such a lovely thought. Only yesterday my Mum was calling for my Dad who passed away 7 years ago. I said he’d be here soon to look after her xxx
     
  17. Ostrich63

    Ostrich63 Registered User

    Jul 9, 2018
    27
    Well here we are; on Friday 18the the Doctor said "you will be lucky to have her till Monday" Sunday Mom rallied and even ate a small quantity of soup no more than 3 4 spoonful's.

    Then started small amounts of drinking again on Friday Doctor out again and said nothing is written but she seemed to have rallied although now cannot weight bear at all and needs assistance to go a few steps to the commode and eaten nothing since last Sunday's soup.

    Very tired but lucid (more than ever when awake) commenting on the weather. I know she is fading but this waiting and watching is heart-breaking.

    Especially when you are caught unawares by your Mom calling out "be careful going downstairs with that glass" and realise how much you love her.


    In my mind I THINK she is completing tasks.

    This week she has said she has been to her parents grandparent and aunts grave (same graveyard) and tided up and put on fresh flowers. Her only remaining sibling is her sister who has learning difficulties who Mom has always looked after and she said she had been there and given it a good tidy up (as she used too) Also finished knitting the difficult shawl (lays unfinished in the box) and is pleased with it. So in effect almost a tick list maybe, as always making sure everyone alright.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Its a terrible roller coaster @Ostrich63

    I was told 3 times that my mum would not survive and she rallied.
    You are probably looking at the beginning of the end, but it is hard to cope with the ups and downs
    ((((((((((((((((((((((((((((hugs))))))))))))))))))))
     
  19. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,108
    Toronto, Canada
    I well remember what a hard and difficult time it was, but I found there was also at times a sense of unreality to it all.

    Thinking of you.
     
  20. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,023
    Nottinghamshire
    Thinking of you @Ostrich63. Your mum sounds like a lovely person.
     

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