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This topic contains 12 replies, has 6 voices, and was last updated by  Ally 2 months ago.

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  • #13594
     Jean Mellano 
    Keymaster

    Here is a link to a useful video for first time caregivers. (This video applies to caregivers in general, not necessarily unique to PD).

    https://abc11.com/health/caregivers-corner-a-guide-to-being-a-first-time-caregiver/5099133/

    Being a caregiver can seem overwhelming at times. Do you feel that way?

     

  • #13703
     Alex K W Cheung 
    Participant

    Yes !The First Time ! Thanks for the Forum and This would be Highly Benefited to All of Us !

    • #13706
       Jean Mellano 
      Keymaster

      Alex

      that s great you are a caregiver!  make sure you take care of yourself too!

  • #14329
     Angela Stephens 
    Participant

    It’s the first time for me, at least long-term and not including caring for children. I don’t find it easy being the sole carer. I can’t do most of the things I had planned in retirement.

     

    • #14332
       Ally 
      Keymaster

      That’s difficult, Angela. What were some of the things you had planned to do?

  • #14330
     Jean Mellano 
    Keymaster

    Thank you for posting your response Angela.   Life always seems to throw us curve balls.  As a caregiver, please make sure you find time for yourself and care for your self. Perhaps there may be some caregiver support groups in your area. Maybe the neurologist has some recommendations or perhaps a group may be associated  with your local hospital.

     

    You have a very difficult job and support of others who may be in the same boat may be helpful for you.

  • #14791
     sachin bhombe 
    Participant

    thanks Jean for useful information, that help a lot for such difficult job

    • #14792
       Ally 
      Keymaster

      Hi Sachin, great to hear from you. Are you a caregiver? Who are you caring for? What other information are you looking for?

  • #15282
     Janis M Kucich 
    Participant

    I am a first time caregiver for my life partner. He was diagnosed about 1.5 yrs ago. He got lost about a week ago on the subway. It was the worst experience for everyone. I have taken a leave from work for 2 weeks while I arrange for home aid.

    He is very angry and withdrawn from me right now. When he speaks to family on the phone (siblings and daughter all out of state), he laughs and is light hearted. Then he hangs up and turns away from me. I don’t know how to bring back the man I love.

    • #15284
       Jean Mellano 
      Keymaster

      .Janis. I am so sorry to hear about your life partner and I feel for you. Being a caregiver of a loved one can be so difficult.  My best friend was a caregiver for her 98 year old mom who lived with her and her husband for 17 years.  Just recently she called me crying saying that her relationship with her husband was deteriorating and she had to move her mom to assisted living.  She has always told me her mom was  mean to her yet her mom put on a happy face all the time for visitors, family and friends.  This seems to be fairly common with caregivers and their loved ones.  I hope you can’t find a caregiver support group near you, maybe at a local church, hospital or hospice.  Please do take time four yourself to recharge.

    • #15292
       Ally 
      Keymaster

      I’m so sorry to hear about your experience, Janis. Why is it that we are so inclined to take out our hurt and anger on the people who care for us and love us best? Perhaps this anger is another PD symptom but it’s not fair to you. Are you involved in any support groups for caregivers in real life and/or seeing a mental health specialist to support you? Thinking of you and sending lots of supportive energy your way.

  • #15286
     Janis M Kucich 
    Participant

    Thank you Jean, for your response and words of encouragement. It’s nice to know there is a forum like this to share experiences.

  • #15288
     Jean Mellano 
    Keymaster

    We are all in this boat together…. hang in there

  • #15610
     Vee 
    Participant

    I hate the word “Caregiver.”  To me, it sounds like a paid position.  I consider myself a Care-partner to my husband.  We are in this thing together for the long haul.

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