1. lilysmybabypup

    lilysmybabypup Registered User

    May 21, 2012
    Sydney, Australia
    Just feel like crying all the time, and how selfish. Mum, 82 is caring for Dad, 86, with AD. I am there most days, shower him, shop, prepare their meals, transport, try to give Mum a break as much as possible. But, in the end, it's Mum who is there all the time.

    Dad is around Stage 7, now has trouble walking, almost blind, but not incontinent. He is generally sweet really, and calls us both Mama. He can get unbearably difficult when I try to help him get to the shower, it's the walking, not the shower. Fortunately he is usually happy enough to shower, but it exhausts him. In trying to help him do things, like getting into the car, it's such a long and hard process, he doesn't know how to get into the car, and breaking the process down into tiny steps can be so challenging. I don't think he will cope with getting in a car much longer.

    Today when showering, I needed him to walk forward with me, then turn 180 degrees to sit in the chair. He is so fearful and unsteady and the bathroom is too small for his walker. He became grumpy and mean, which I know is normal, he's tired and confused. But I explained I was trying to help him and it isn't nice if he's grumpy. He looked at me so sadly and quietly asked, "Was I grumpy?" I said no, and kissed his cheek and stroked his hair. It was just overwhelmingly sad.

    It's hours later and I can't stop feeling like crying. Once again, there's been enough time, dealing with the various stages and progression, and I've researched and learned enough to understand this disease, and the daily grief, so it's not unexpected, I just needed to share.
  2. Sue J

    Sue J Registered User

    Dec 9, 2009
    Hi lilysmybabypup

    Sorry you are so sad today, I am too.

    Your poor Dad at least you understand he doesn't mean to be grumpy - that may not feel like one but it is a blessing for you and him.

    Do you have one of those swivel pad seats for the car at all, maybe you have, they can make it a bit easier.

    When I used to nurse and take patients like your Dad for showering I used to use the same reassuring words each time to try and take the focus from their anxiety to the reassurance and I think the repetative nature of that helped. You may do this already but I know it is harder for the relatives than nurses or carers often because of emotions that you describe.

    I am very sad and tearful today too. There has been a bereavement in the family and I don't 'behave' in the way I once did but nonetheless the grief is there and it just gets overwhelming - it is good to get it out and cry - holding it in is the mistake. Thanks for sharing because you've helped me feel a bit less alone today and hope your sadness lifts soon.
  3. lilysmybabypup

    lilysmybabypup Registered User

    May 21, 2012
    Sydney, Australia

    Thank-you so much for your kind reply. How lovely you are to give comfort when you are feeling so down yourself. Big (((((hug))))) to you, I'm so sorry for your loss, I hope you have others around with whom you can share.

    No, I don't have a swivel, the real issue with Dad is he is 6'4" and 92kg, and is only able to lift his feet a couple of mm. Being almost blind means he has to feel and trust, and one time he explained, so coherently and perceptively for his state, that, while he knew the ground was even, that was not what his brain was telling him, so he couldn't move forward. Getting into the car I need to lift each leg in for him anyway. Being an ex-primary teacher, I'm quite good at giving him lots of praise along the way so he is feeling he's making good progress, it's just sometimes he is resistant to my guidance.

    I think it's just some general sadness I'm feeling right now as I see his struggles and also Mum's exhaustion.

    Thanks again, Sue, for your kind words of support. I hope you feel cheerier very soon.

    Stephanie, xxx
  4. bemused1

    bemused1 Registered User

    Mar 4, 2012
    Sue I am sorry for your loss and hope you aren't feeling too bad now.you are never alone, you have us
  5. Keely

    Keely Registered User

    Aug 6, 2007
    I think its normal to be sad this illness takes the person we love away form us in all kinds of ways. You are doing your best and to love your dad the way you described when you are feeling stressed and very sad is more than commendable. My experience of caring for my mum led me to believe that the kind loving gestures in some way get through and its all we can do. We are all human and its just so difficult watching and coping with our loved ones who are slipping away from us and getting lost in the illness. Crying is a release and gives a voice to the sadness. But it can also be a sign that we need more support. Take care of your self & I am sending a hug.
  6. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    Lilysmybabypup, I'm sorry you're so sad, and you are right to share as it often helps to do so even if there are no real answers. You sound like an incredibly kind and patient person and it's obvious that you are a wonderful support to your parents. I would just like to send you my best wishes xx

    Sue - I'm sorry to hear of your family's bereavement, and I do hope you're okay. Take care and give yourself time xx
  7. Dazmum

    Dazmum Registered User

    I'm sorry that you are having a sad day, Lilysmybabypup, sometimes it's the smallest things like a look or a word that affect us. I used to shut myself in the bathroom and have a good sob sometimes at the sadness of it all. A hug for you and hope tomorrow feels a little better for you xxxx
  8. Pheath

    Pheath Registered User

    Dec 31, 2009
    Dear Stephanie

    I’m very sorry to read your post and how sad you’ve been feeling lately. As a daughter whose dad has also been struck down with this awful illness I can completely empathise with the heartbreak you feel. Like you, I can get very tearful and even though dad’s had dementia for many years have never fully managed to fortify myself from the pain of it all. Although he’s now at a care home the emotions are no easier to handle as we witness his decline. Yes, seeing them struggle with even the most simple tasks is so difficult, similar to yourselves getting in and out of the car is a real feat these days. I can only say allow yourself the freedom to cry when tears arise as it provides some outlet and you often feel better afterwards. Unfortunately there’s no secret formula for bypassing the sadness of it all, we just have to find whatever coping mechanisms we can. Do hope there’s the option of more support should you need it, you’re doing amazingly well for both your parents.

    Take good care, Px
  9. lilysmybabypup

    lilysmybabypup Registered User

    May 21, 2012
    Sydney, Australia
    Thank-you all you caring people for your words of comfort and encouragement. I feel like I was having a bit of a selfish moment, feeling sorry for myself, especially since Mum really is getting the worst of it.

    I think I also felt overwhelmed, sometimes it's hard knowing I'm Mum's main support and need to be available all the time. But I also felt such sadness when I saw how much he's lost even in the space of a year.

    Thank-you again, I feel much better today, Dad went to Day Centre today and I insisted on Mum coming with me to the shopping centre for a coffee and a little mooch about. She was so much happier afterwards and said, even though it's tiring getting out, she really enjoyed it.

    Stephanie, xxx
  10. 21citrouilles

    21citrouilles Registered User

    Your words have touched me deeply, as I can feel all the love in your family. It's normal to be sad, this is devastating. We all know what it is.
  11. 60's child

    60's child Registered User

    Apr 23, 2013
    Never feel selfish for crying for your Dad. You sound like you are amazing support for your parents. You might be "back up" for your Mum but you are worried about her as well so double whammy for you. I often cry at the "loss" of my lovely Mum but usually feel better afterwards. We are all human after all. Sometimes things seem managable but then a silly little thing will send me over the edge into a crying heap. Seems to be the norm when caring for a loved one with this dreadful disease.
    No advice for you about the shower but just wanted you to know you are not alone and being able to cry shows how much you love your Dad.
    Thinking of you
    Dee xx
  12. FifiMo

    FifiMo Registered User

    Feb 10, 2010
  13. lilysmybabypup

    lilysmybabypup Registered User

    May 21, 2012
    Sydney, Australia
    Thank-you, Fiona, for that helpful link. There are so many useful looking items on the site, but I'm in Australia and they don't ship overseas. Perhaps I can search for similar sites here.

    Stephanie, xxx
  14. lilysmybabypup

    lilysmybabypup Registered User

    May 21, 2012
    Sydney, Australia
    The weepy thread

    Thanks again everyone, perhaps this can be the weepy thread. Reminds me of a scene in the movie Steel Magnolias, Dolly Parton responds to a tearful Julia Roberts, "I have a strict policy that nobody cries alone in my presence." I guess we can all come and have our little weep here when things just get too sad or overwhelming, and we can all join in the collective flood.

    Thanks to you all for taking the time to listen and talk to me.

    Stephanie, xxx

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