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What do you wish others knew about being a caregiver?

It can sometimes be hard to express what it’s like to be on the journey of Alzheimer's caregiving. What do you wish others knew about your caregiving experience? Share below!

  1. The hopelessness, the loneliness, the fear

    1. Yes, and mix in the aspect of the unknown and it is so very challenging. Thank you for sharing your thoughts. Scott AlzheimersDisease.net Team Member

    2. absolutely agree with the wide range of emotions as caregivers we go through. The hopelessness, loneliness and fear. Such a rollercoaster. There is an article that really impacted me on "The Emotional Rollercoaster" that we experience as caregivers and loved ones. I have attached a link to the article below. https://alzheimersdisease.net/living/emotional-rollercoaster-caring-alzheimers
      My anxiety and stress level was also greatly impacted as a caregiver.
      Really appreciate you reaching out.
      Just Keep Swimming...Lynn Marie, "AlzheimersDisease.net Team Member"

  2. Caregiving was the worst of times but also the best of times. My Mother passed away last year from Alzheimer’s, although at the time I didn’t think I would make it through being her caregiver, I did and I would do it again.

    1. Thank you for sharing your thoughts. Now that you went through this, what would you tell someone just beginning this journey with a loved one? Scott AlzheimersDisease.net Team Member

  3. I think I would tell someone new to the Alzheimer’s journey, that I personally lived my life in moments of time…and that was okay. I could never predict when my Mother’s behavior would change. I worked at having a solid routine to try and keep her as calm as possible, but of course you can’t prepare for someone else’s emotions all the time. Give yourself some grace, try to find moments of quiet to recharge and know even when you’re frustrated you are still giving your loved one a great gift of care.

    1. These are beautiful words that resonate with me and I am sure with others as well. I love that you choose to cherish each moment and that you give yourself grace. Caregiving is a difficult journey and such an honorable one, too. Scott AlzheimersDisease.net Team Member

  4. I first want to say I am sorry for the loss of your mom. My mom passed in July 2019. I too didn't think at times I'd make it through her caregiver. I actually just wrote an article about it and my journey and experiences. No pressure to read, but I have attached a link to the article below.
    https://alzheimersdisease.net/living/chronic-condition-while-caregiving
    I too would be a caregiver to both her and my dad, again in a heart beat.
    The grief process for both my mom and dad were both very different, but difficult. Please know you are in my thoughts. If you have some time to reach back out, I would love to know how you are doing. Sending a virtual hug your way!
    Just Keep Swimming...Lynn Marie, "AlzheimersDisease.net Team Member"

    1. Thank you Lynn for your virtual hug!!! I’m doing better these days, the extreme heartbreak and pain of separation after my Mom’s death has lessened. I went into caregiving for my 96 year old father, who is still doing relatively well. His care is more monitoring, meal prep and cleaning. Like you his care is very different from my Mom’s. I will definitely read your article!!
      Sincerely,


      Margaret P.

    2. (Margaret) I saw your post back to me and I am appreciative for it. So glad you received your virtual hug. I am glad to hear you are doing better these days. Understand the extreme heartbreak you describe, from when my mom passed.
      It has been a few years and I feel her and my dad with me all the time. Which honestly is something I did not feel all the time.
      Whenever there is something little or even monumental in my life that happens, instead of feeling lonely I picture them dancing on a cloud and smiling.
      I am very glad that you can be there for your dad and he seems to be doing well for 96 years young. Enjoy every moment you can with him.
      Thank you again for reaching back out. Appreciate you!
      Just Keep Swimming...Lynn Marie, "AlzheimersDIsease.net Team Member"

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