1. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    Heather, You are a good daughter, your mum has lost so much, but she is so fortunate to have you, and I hope that somehow she knows this, even if she can't communicate it.
    Sleep well, and God bless you too. x
     
  2. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    It is so sad to learn so many of us are going through this with our loved ones. On Monday I went to see my mom. She actually said a few words. I had to prompt her and kept repeating the words. She said my name, which I found very emotional. She was quite smiley and did manage to stay awake for most of the visit. Came away on a bit of a high. Deep down I know these good days will be rare. Will be going tomorrow and am hoping it will be another good visit. She did stare at me a lot, it was as though she was trying to think who I was. The carers are wonderful and are very good with mom. It's an awful disease and so cruel to watch thr person you love just disappear before your eyes. I love my mom to the moon and back and would miss her so much, but .......... I am sure you know what I am trying to say. Love to all, we are not on our own on here. Xx
     
  3. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    Today's visit was a definite down visit. Mom is full of a cold and has an awful cough. She has conjunctivitis. The doctor has been out and her Chest is clear. I have been asked to buy some bibs for my mom as she is dribbling a lot. That is something I thought I would never have to do for my mom. I tried to get her to blow her nose as she is so bunged up. She could not understand what I was asking of her. Feel just a bit low this afternoon. :(
     
  4. catbells

    catbells Registered User

    Jun 14, 2010
    384
    Cambridgeshire
    Hi WendyC
    "I love (her name) to the moon and back" is something I sing to my Mum several times when I`m visiting. I have a small ornament with the words on it. I have done this for about 6 months now and she would normally smile and look at me recognising her name, but now today I fear might have been last time I sang it to her - today laboured breathing to tired to hold my hand, move her own hands etc. Her worst day so far.
    Enjoy your time with your Mum. All too soon there are more bad days than good, hang onto the good days. I will always remember the happy cuddles and kisses, smiles, holding hands we have had even though no words were spoken. We have enjoyed mutual comfort cuddles. Now its just my smile, me holding her hand and stroking her head with just a whimper and a little look at me, hardly able to hold her eyelids open. I assure her she is safe and doing very well, nothing to worry about, just go to sleep and rest.
    Heather xxxx
     
  5. Ash148

    Ash148 Registered User

    Jan 1, 2014
    274
    Dublin, Ireland
    Wendy, I'm so sorry you're feeling low. Sometimes I describe the dementia journey as a roller coaster, but on reflection there are far more downs than ups along the way. Try to be kind to yourself.
     
  6. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    I have been to see mom today with my two daughters. We got there at lunch time, so I said I would feed mom. She managed her soup quite well, but then her puréed fish dish she had trouble swallowing it. What is sad is my eldest daughter is getting married in June and mom does not know. If she was not ill she would be the most excited lady in the world, in fact she would be organizing us all. We talked to her about it, but that lost look in her eyes, heart breaking. She seems to be losing weight, both my girls commented on it. It's a roller coaster ride as Ash148 says and it is far more downs at the moment than ups. My poor poor mom. Xx
     
  7. Danni

    Danni Registered User

    Oct 4, 2014
    12
    Wendy, It seems to me that there is no pattern to end stages. We were told that our mum was in her last days/ weeks back in October as she had not eaten for 5 weeks and was only sipping water. She miraculously rallied round and started to eat puréed food and drink lots of fluids. She is totally immobile, just stays in bed ( nursing home) doubly incontinent and very frail. However she chats incessantly! She still recognises me and says my name when she talks to me, but gets anyone else visiting her mixed up, for example she thinks my granddaughter is my daughter and so on. She talks as if she is a 20 year old. I.e that her mum and dad and sisters came to see her earlier.. ( she's 90). She had a bad chest infection in January and I really thought it was the end, but once again she rallied round. It's so true that this nasty disease is a roller coaster and just when you think they will be at peace at last, the torture continues. I have asked the home questions about her and to be fair to them they don't have the answer. They have told me that her major organs are strong and as long as she continues to eat and drink it could be a very long road.
     
  8. rhapsody

    rhapsody Registered User

    Aug 14, 2012
    6
    Firle near Lewes
    Hi Wendy. I worked in an E.M.I. home and can tell you we had a lady in a very similar situation as your mother. In the 2 years i was there her condition didnt change. This lady really surprised me several times. Where she didnt speak,and didnt seem able to understand if spoken to,very occasionally she did say the odd word. Once was when i had taken some perfume in and offered her some after her personal care.She told me 'Yes!!' then gave me a huge smile. She had the richest and most beautiful voice. This happened several times and always when i asked her a question.Her remark was always in context with the question asked. At the end of the day 'love' is all that is needed. Even if you feel they are not understanding, chatting to them ,talking about the past , including them as the person they are, all is not lost. Even though you may feel they are lost ,sometimes you can get through! It is a different stage in their lives,that is all.They are still your 'mother', 'father', 'brother' or 'sister' and you are doing the best you can for them.:)
     
  9. rhapsody

    rhapsody Registered User

    Aug 14, 2012
    6
    Firle near Lewes
    Hi Wendy. I worked in an E.M.I. home and can tell you we had a lady in a very similar situation as your mother. In the 2 years i was there her condition didnt change. This lady really surprised me several times. Where she didnt speak,and didnt seem able to understand if spoken to,very occasionally she did say the odd word. Once was when i had taken some perfume in and offered her some after her personal care.She told me 'Yes!!' then gave me a huge smile. She had the richest and most beautiful voice. This happened several times and always when i asked her a question.Her remark was always in context with the question asked. At the end of the day 'love' is all that is needed. Even if you feel they are not understanding, chatting to them ,talking about the past , including them as the person they are, all is not lost. Even though you may feel they are lost ,sometimes you can get through! It is a different stage in their lives,that is all.They are still your 'mother', 'father', 'brother' or 'sister' and you are doing the best you can for them.:)
     
  10. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    .

    Hi all, and thank you for all your support and replies.
    The home rang me this morning. Moms has oral thrush again. Apparently because mom is not chewing her food, her tongue has become infected. They are getting the speach and language team in to see if they can do anything about her swallowing. They are going to start giving her liquid drinks instead of pureed food as that is the problem. She is losing weight. Also they are thinking of taking her off her medication as they don't think it is having any impact any more. They also said mom has deteriorated in the last few weeks. Trouble is she can't tell us if she in pain, ie her tongue must be sore.
    What a horrible position my poor mom is in. Just wish I could get her to speak to me and tell me how she feels. X
     
  11. Ash148

    Ash148 Registered User

    Jan 1, 2014
    274
    Dublin, Ireland
    Like Rhapsody says, my mum sometimes manages a yes or no to a specific question and there is an occasional "nonsense" sentence which I always respond to as if it made perfect sense. Perhaps two visits out of three, mum says my name. I treasure this but am always a bit low the days it doesn't happen. I daren't ask my siblings if mum says their names as would feel for them if she doesn't. She doesn't say my dad's name when he visits with me, which he finds very hard, but she said it yesterday when I was there on my own, which I'm looking forward to telling him tomorrow.

    Mum has had two "near death" episodes in the last four weeks but bounced back both times. We know she is end stage but have no idea how long we have.
     
  12. Wendy C

    Wendy C Registered User

    Jan 29, 2012
    121
    West Midlands
    I hate this bloody disease

    Please excuse my language, but not in a good place. Have been to see mom today. She was actually like a vegetable today. No life what so ever. She was in her wheelchair as they had just taken her to the toilet. She can hardly walk now. We wheeled her down to her room where she just either stared at me, quite spooky, with no expression, or shut her eyes and was sort of dreaming. We had no smiles, and did not even hold my hand. I don't even think she knew we were there. This is the worst I have seen mom and it's just horrible. I try to get on with my normal life when I get home, but all I can see is the vacant, lost and troubled look on my poor moms face. Bloody heartbreaking. Xx
     
  13. tryingtosmile

    tryingtosmile New member

    Mar 13, 2018
    6
     

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