Counting my blessings, well……….. it didn’t last

Discussion in 'ARCHIVE FORUM: Support discussions' started by Cate, Jan 3, 2008.

  1. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Everyone, Happy New Year to you all

    I have enjoyed several months of mum being very stable, no major downward turns, just little by little more memory disappearing, but for all that happy in herself and happy in the NH.

    We had a lovely Christmas; a bit challenging in terms of getting to the NH, getting mum ready and catering for everyone else in the family, but I managed it.

    Christmas Day was really lovely. My son was on duty, but he even managed to get home to see Nan for 20 minutes, (she had never seen him in his Police uniform), and was thrilled to bits. She had plenty of naps throughout the day, but each time was refreshed. She had hearty meals, and plenty of bits besides. I didn’t take her home until 10:00pm, tired but happy, I left he snuggled up in her new fluffy dressing gown very happy indeed.

    Boxing Day. Again a bit of a challenge to get over to the NH, get mum dressed and ready, then back home to finish off the lunch. Then the arrival of the grandchildren and 3 great grandchildren, the youngest of which is 3 months old. Mum was clearly very pleased to meet the new baby and had lots of cuddles. However by 4:00pm mum said she was tired and wanted to go home. I settled her for the night, the nurses brought her evening meal to her room, and she looked happy and content.

    Even before the holiday mum had a cough, just like the rest of us, nothing major, just annoying, it didn’t seem to bother her too much.

    I popped over to see her the day before New Year’s Eve and she was fine, still had the cough but was happy in herself.

    I went away for one night, New Year’s Eve. I phoned the NH in the morning, mum wasn’t up, but was fine and it was only 9:30am.

    I phoned on my return, mum had refused to get up for two days, and she hadn’t washed, not eaten much, but as usual had drunk copious amounts of tea. The nurse also told me that she still had the cough, it wasn’t any worse, but they had organised for the doctor to come yesterday anyway just to check her over.

    When I arrived at the NH mum looked dreadful, (now day 3 of being in bed), not ill, but unkempt. Filthy nightdress, she had refused to change it, hair all over the place, and clearly she hadn’t washed, and she was in a dreadful mood, she had been verbally abusive to all the staff. She told me to sod off, she wanted to die, hated the NH, hated everyone, even took a swing at me when I went to kiss her.

    When the doctor arrived she physically fought him like a demon when he tried to take her pulse and listen to her chest. Her language was dreadful. Flashback 16 months ago. The doctor said no chest infection, tummy soft and normal, pulse irregular, which is normal for mum since the heart attack. Physically she is fine. I asked did he think that Christmas had just been too much for mum, he didn’t think so, he put it down to a decline in her AD.

    I have obviously been in fools’ paradise, thinking that mum would not return to being the aggressive demon she was 16 months ago, but obviously that was very stupid of me. I guess I should be grateful that I had a period of mum being, for want of a better word, ‘nice’.

    Today I feel totally heartbroken; I honestly didn’t think mum would return to that ‘phase’ of her AD again. I have cried buckets since yesterday. The nurses have been fantastic, they take the verbal abuse on the ‘chin’ and try the very best they can with her.

    I have always had a very subservient relationship with my mum, her word was always law. What to do now, do I take a firmer approach with her, (I didn’t last time, I just took the abuse, or on the worst days, I simply left) do I try to insist that she get up, get washed, get dressed, or at least change out of her filthy nightdress, or do I just leave her to get on with it.

    For my part, gone is the lady who bounced up the NH front door looking forward to her visit, or bringing my mum home for the day. Here we go again, talking myself into going to visit, tears outside the door, heavy heart, not knowing what to expect. All this in less than a week.

    Thank you so very much for taking the time to read my post. I cannot face ‘talking’ to anyone about it, but this has helped me. I think I may just go back under the duvet myself.

    Love to all

    Cate xxxx
     
  2. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Oh Cate, so sorry your dear Mum has declined again.

    What you must concentrate on is the lovely happy Christmas you had together and hope things settle down again.

    I have as yet no experience of what you are going through but send you a big ((((((((hug))))))

    Take care

    Linda x
     
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Fools' Paradise? Or simply a state of hope? The trouble is when hopes are dashed we come crashing down .....

    In spite of a difficult relationship look at the lengths you have gone to for your mum ... and don't you start for one minute to think Christmas was too much for her or that going away for one night had anything to do with this (I can hear the GM in your post) .... how many other daughters would have gone to the lengths you have over the holidays to make it so special? ..... how many other children would have done all you have for a parent - especially when the relationship has historically been less than ideal, perhaps? I know your words of wisdom have always helped me in caring for a mother who has presented some challenges long before dementia set in ... and your example has been inspirational.....

    Cate the only thing I can say just now is 'Keep counting those blessings' - think of how wonderfully happy you made your mum ....... even if it didn't last forever - you achieved something remarkable for her .... let those wonderful staff take as much of the strain as possible - they are not emotionally attached ...... and just do all you need to do for you to keep charging up your emotional batteries ..... have a duvet day if that's what you need .... let the dam burst until there are no tears left ..... then when you are ready to face 'talking' you know ..... well, you know .................

    All my love, Karen, x
     
  4. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    please Cate dont go back under the duvet, this year was to be an effort for the new you , yes it`s so hard to see mum`s change , lets hope it does not last,it can change once again , but first and foremost ,you have to think of yourself right now ,
    sending you good vibes,and lots of love.Angela.xxxxxx
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,664
    Kent
    Dear Cate.

    There`s nothing worse than the slap in the face of the unexpected. And yet with Alzheimers, I think we all have to learn to be on our guard continually.

    I`ve written so many posts about how settled Dhiren seems, less confrontational, more peaceful etc. and almost as I`ve written it he has changed.

    I know it`s different with your mother as you have had a long period of calm. I can really understand how upsetting it is for you.

    From my experience with Dhiren, I would not be subservient, nor would I challenge your mother, or try to insist she does what she obviously has no intention of doing. But if she is aggressive or abusive towards you, I would tell her you are not prepared to tolerate that behaviour and walk away. It might work, it might not. I hope for your sake, she`s still able to get the message and calm down.

    If it does work, be prepared to have repeat performances.

    I would still be concerned about her cough. If there is no infection it doesn`t mean nothing is wrong. Is your mother`s inactivity allowing mucus or fluid to settle on her chest? Could you ask if anything can be given to make it easier for her.

    Dhiren`s breathing has become a little `bubbly` and I`m keeping a close eye on him.

    Take care Cate. It certainly is the worst way for you to begin the new year.

    Love xx
     
  6. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    I am so sorry about your Mum. As I started to read I felt that she had some minor infection which was setting it off, but most likely the GP is right.

    I am sure you must be firm with your Mum, for both your sakes - but at the same time you know when to 'walk away' - even if only temporarily. I would like to say 'don't get upset' but I know only too well that is impossible. Most of us have been there too so can only help by 'sharing' with you.

    Keep your chin up and let us hope it is just another passing phase. Otherwise you did have a good period in which to 'count your blessings'.

    Think of yourself in all this. Best wishes Jan
     
  7. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello Cate

    Sorry to hear about your mum. After all you've done over Xmas and the seemingly peaceful times you've had, it is a kick in the teeth.

    As the others have said, you need to be firm when you can and, maybe take your foot off the gas a bit. In doing everything you did for her and being 'rewarded' as you have been, it certainly must leave you feeling deflated and tired. When I had my carer's assessment recently, it was suggested that I was trying to do too much and perhaps that applies to you too? In trying to create a 'normal' environment/routine for us and them I think WE sometimes forget that this can no longer be achieved. Well, I do!

    Only go back under the duvet if you have a bottle of your favourite tipple in the bedside cabinet!:)

    Take care.
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london

    Yes, Yes , yes.

    The past is dead and gone in what ever relationship you had with your mother , my mother can get in moods like that . I stand back in my mind live in the hear now with her , I assert myself over her in a firm loving way without losing my temper its hard and I am sure you know that .


    It must be different, more difficult for you because your not with your mother full time , where I am so my mother no my moods will listen to me .


    That good to read , because then you know they doing the job they paid for .



    I can only imagine how distressing it is to see your mother like that and her not excepting your help , and then I can imagine it because when I first started to care for mum she was like that toward me . Now your mother use to care home not you , but what can you do! but only change your reaction to it , because your mother surly not going to change .

    Please don't let your mood change , Just because your mother moods are changing xxx
     
  9. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    No advice Cate, just wanted you to know that you are being thought of.
    Love Helen
     
  10. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    chin up cariad!!!!!

    hiya cate

    you had a lovely christmas......hold on to that:)

    I often think part of the disease is taking one step forward and two steps back:mad:

    kick that gm out for a start......your mum had a great time too....hope you're not feeling bad for taking mum home and giving her a lovely time!!!:eek:

    Poor mum must be feeling under the weather with this cough she has....and when we're ill who do we take it out on?....the ones we love...your mum just can't undrstand how poorly she's feeling so she lashes out at people around....like my mum..yours is a feisty lady!!!!

    Don't also forget honey that you haven't been feeling too great yourself......as always you will get through this.

    lots of love and talk when you are ready.....we're all here for you big sis!!!!

    Wendy xxxxxxx
     
  11. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    #11 DeborahBlythe, Jan 3, 2008
    Last edited: Jan 3, 2008
    Hello Cate, I'm really sorry to read this thread. However, firstly, please try not to get too upset. You gave your mum and the rest of your family a fantastic Christmas. Truly heroic. I remember a previous posting of yours about last year's Christmas and thought at the time what an amazing amount of hard work you were putting into making everyone's Christmas fantastic, and especially your mum's. This year it sounded even more heroic!!

    Give yourself a big shiny medal and an even shinier halo for all the Christmases you have sweated and run around and fetched and carried and cooked and organised and generally been the lynchpin upon whom everyone relied for a jolly good festive time.

    Now, about this 'relapse'. I'm with Sylvia in suggesting that they keep a very close eye on your mum's physical health. I have a friend whose venerable mum would be completely 'away with the fairies', aggressive, rude etc if she ever went down with a chest infection or a urinary tract infection. A perfectly seemly aged lady at other times.


    You didn't mention here whether that doctor took your mum's temperature. Did he think to get her urine tested? Was he in a hurry to get away from the uncomplimentary patient perhaps?

    The other thing that occurs to me is that if the home was relying on a lot of agency staff over the holidays, your mum might not have been getting all the correct treatment, attention that she might/should have been after you returned her triumphantly back to the home in good spirits and health. It does seem a very quick turn around in her condition and I'm not sure why she was 'filthy'. The staff could have attended to her cleanliness, surely?

    Don't despair, dear Cate. Your support for your mum has been brilliant but as others have said and you know yourself, it is a very emotionally draining role caring for a loved one with dementia. Go easy on yourself! We can't have you all miserable and downhearted. It's just not on. You don't deserve it! Please let us know how things are going. We all care very much for you.
    Love Deborah
     
  12. sheilarees53

    sheilarees53 Registered User

    Apr 11, 2006
    37
    Beckenham Kent
    Dear Cate,

    No advice but lots of hugs. I am going through a lot with my mum at the moment and tears are never far away. Keep strong.

    Love Sheila
     
  13. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    Hiya Cate.

    Just going through the same thing myself with Jean. christmas has been rubbish, constant aggressive paranoia.

    Could not abide to be in the same room as me and backed off big style when ik approached. Would not eat anything I had prepared and only drank the tea i made out of some deep rememebered necessity. We were doing so well together.

    I know exactly how you feel. I don't want to get out of bed some mornings knowing what I will have to face and i certainly don't want to go bed at nigyht because i know I will have to get up next morning.
    ne of the things that's makes it bearable is having the opportunity and the ability to talk about it in various forums

    It is at times like this when friends and people in the same circumstances offer understanding and some small comfort.

    That is all I can offer in the hope that it helps in some small way.

    Keep calm Cate and do your best to hang on to yourself.
     
  14. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Cate,

    {{{HUGS}}}
     
  15. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Cate,

    This disease is certainly unpredictable, no sooner it seems that things are running along so smoothly and everything can change in the blink of an eye.

    I do hope that medically your mum is OK...we have to be guided by the doctor diagnosis but Deborah has pointed out some very good points.

    Your mum's unwillingness to cooperate with her personal care is a hard call. When mum was at home this was a issue and one that I found better to leave alone, as to insist would only escalate the situation. In the home she is very compliant as long as she is assisted and this doesn't happen....so I can't win. I think that I would tell the staff that you would like her cleaned up and would appreciate their efforts in trying to do so.

    Judging by the behaviour of mum and other residents following Christmas and New Year there is a lot of agitation amongst them. Maybe it is due to the complete change in their routine and after all the hype probably comes confusion and hence, the acting out.

    I hope that your mum settles down soon and you can once again enjoy your time with her. That's my wish for you. Regards Taffy.
     
  16. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Yesterday and Today

    Hi Everyone

    I have been totally overwhelmed by the support both in response to my thread, and the personal messages I have received, thank you all so very much.

    You didn't mention here whether that doctor took your mum's temperature. Did he think to get her urine tested? Was he in a hurry to get away from the uncomplimentary patient perhaps?

    The doctor was fantastic, he was so kind and patient (his dad has AD so he totally understands). No he didn’t take her temperature or get a urine sample; it took him an age just to do what he achieved. He felt that mums level of agitation and aggression was such that he wasn’t helping matters. No to be fair he rushed nothing, he was kindness itself, and after seeing mum spent 20 minutes with me and the senior nurse in the lounge talking to me about what I wanted for mum in the future if this that or the other happened. Mum, nearly 90, I expressed my wishes that she not be moved into hospital in any event, no invasive procedures, etc, our last experience of mum being in hospital was probably the worst experience of all our lives, particularly mums. Yes they could carry out all sorts of tests, but to what purpose, at her age, mental capacity and heart condition, she just wouldn’t survive any operations physically or mentally. We agreed plenty of TLC at the NH is now the best option for mum.

    The other thing that occurs to me is that if the home was relying on a lot of agency staff over the holidays, your mum might not have been getting all the correct treatment, attention that she might/should have been after you returned her triumphantly back to the home in good spirits and health. It does seem a very quick turn around in her condition and I'm not sure why she was 'filthy'. The staff could have attended to her cleanliness, surely?

    No agency staff, in all the time mum has lived there, I have never seen any. All the staff have been there years and all know mum very well. Mum was so filthy because she won’t use a tissue when she coughs (sorry to be so graphic but she was covered in phlegm). Unfortunately they cannot ‘insist’ that mum does anything, and they have been trying everything to gently ‘persuade’ mum to no avail.

    Judging by the behaviour of mum and other residents following Christmas and New Year there is a lot of agitation amongst them. Maybe it is due to the complete change in their routine and after all the hype probably comes confusion and hence, the acting out.

    I think you have a huge point Taffy. Mum was only one of two from the home that spent it with family; maybe it just was all too much for her, that and the cough.

    Rightly or wrongly I spent over three hours yesterday using every trick in the book, including emotional blackmail in spades, to get mum up, washed, dressed and hair done by the hairdresser. I then took her to the lounge to be with everyone else. After just 3 days in bed she couldn’t stand unaided, apart from the effects of just laying down, she has hardly eaten anything at all.

    I just felt if I could break this cycle, she might be OK, today will tell if I achieved that. To be honest, I just think she is simply worn out; she has had enough of the battle. All night I have been asking myself, who did I do that for, me or mum. The answer is me. Mum may be ready to give up the fight, but I'm not. We have been down this road once before when mum was still living in her own home, and I did mange to break the ‘I’m staying in bed to die’ cycle.

    I have been awash with tears of frustration, sadness and guilt, and I just pray I’m doing the right thing by my mum.

    This morning update:
    I have just telephoned the NH, mum stayed in the lounge until quite late last night. She did need help, but accepted it to go to bed. This morning mum has had breakfast, not much, but it’s a start, and when I was talking to the nurse mum was sat on the side of the bed starting to get dressed.

    I have a hospital appointment for myself today, but the NH will ring me with regular updates. Please keep everything crossed that this crisis has been averted and I have mum for a lot longer yet. I know its too early to tell, but I am the eternal optimist.

    Love to you all, and many many thanks again for all your support, advice and kindness.

    Cate xxxx

    PS. Im sorry my posts have been so long, so thank you for your patience in reading them.
     
  17. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    hiya cate

    its good to see this mornings update

    hang on in there honey;)

    love xxxxxx
     
  18. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    well done Sista, any small improvement is good news , take a deep breath and get back to taking care of you, build up your strenght to face what this year may throw at you, hopefully some good periods. you so deserve it xxxxxxx
    love ,angela.
     
  19. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Update On The Update!

    It seems I spoke too soon. I have just talked to the nurse, and mum didn’t get up after all. She did strip off her nightdress, but just got back into bed where she has stayed all day, curtains drawn, refusing any help or encouragement from the staff.

    She didn’t eat any lunch, and she refused this afternoons snack, she is now refusing her evening meal. She has however had plenty of cups of tea.

    So the upshot is I failed after all.

    Where do I go from here, I just don’t know.

    Thanks again for all your support.

    Love

    Cate xxx
     
  20. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello Kate

    My thoughts are with you !

    Our Mum came out of hospital after her second admission refusing to eat, drink, move or get up and with severe diarrhoea and bedsores. Her carers at the time could try to motivate and encourage but were not allowed to force her or indeed, physically move her.

    We decided that she was unable to give informed consent or consideration to anything we suggested and we therefore physically forced our Mum to get out of bed - in her own interests - to be cleaned of excrement and urine, pads changed, bedsores dressed and body moved around a little. We did it as gently as possible but we were firm in our intentions. After a couple of times she started to co-operate - and we'll never know whether it was because she thought she couldn't get away with it anymore (AZ made her a bit manipulative)or if it just made her more comfortable.

    It was awful at the time and we knew it was risky but we'd do it all again if we had to. Mum is now in a full CH and thriving
    (at least as much as we can hope for given her stage of AZ and VD )

    Good luck however you decide to deal with this latest crisis -

    Regards
    Germain
     

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