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  • This topic has 17 replies, 9 voices, and was last updated 1 month ago by Ally.
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    • #13594
      Jean Mellano
      Participant

      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
        Participant

        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
      Participant

      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      He is very angry and withdrawn from me right now.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
        Participant

        .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
      Participant

      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.

      • #17142
        Ally
        Keymaster

        I agree with you, Vee. When you marry someone, you vow to support them and love them “in sickness and in health”. The caregiving/taking role comes with the territory! At the same time, I do think there is value in having a separate word for this particular aspect of a partnership when it occurs. I like your version a lot. 🙂

    • #16839
      Suzanne R
      Participant

      Vee, I like your appellation of care-partner. I tell my partner the same thing, that we’re in this together for the long haul. But I’m really struggling in my role, trying to find the right balance between quiet, practical support (taking care of the daily routines of shopping, cooking, cleaning, working), being present in order to create a safe place should he choose to talk, and advocate. But as we’ve progressed over the 18 months since his diagnosis, it feels like we’re slipping further apart. There’s a lot of silence and anger on his part. He was an extremely active outdoorsman, and it breaks my heart to see the little old man he’s becoming before my eyes. When I try to encourage him, he’ll often turn on me, telling me I don’t know what it’s like. Other times he’s thankful for my presence. I know that deep down, he’s frightened. It’s just so hard to know what to do.

    • #17087
      Todd Schmenk
      Participant

      Hey all –

      Here is a short version video of a presentation I had done locally for a support group (It was for cancer, but the guidelines apply here as well) in how to build a support team. What also needs mentioning is that it is completely acceptable (and often necessary) for those on a support team to build their own support team. This presentation is also aimed at what to do during the initial impact of the onset of the situation so there is a lot of concentration on 5 specific tasks that should be undertaken. If you have any questions about this, please do not hesitate to respond or e-mail me and I will respond as soon as possible.

      Here is to your support.

      Todd

      https://youtu.be/M89zzoKyzBcSupport for Chronic Illness: Building a Team

    • #17089
      Jean Mellano
      Participant

      Todd. Thank u for sharing. The role of caregiver c an be so challenging, whether it is a spouse or a child, a friend or a relative.

    • #17134
      Curtis Nelson
      Participant

      While I,m not a care giver,I try to assist my good wife in her care giving,as she is caring for three of our adult children,one of which is non-verbal and has  down syndrome, another is autistic,severe crohns, ileostomy, 24 hour g- tube feeding, just scratching the surface here. Course, now I fear I’m about to add to her already over loaded 24 hour day.It’s a bit scary, did say bit?, when I read of other’s experiences with PD. But what I think I’m beginning to learn  is that my care giver, all care givers, but the one I’m really concerned for, my fantastic wife, really needs a lot appreciation, something that has been lacking from yours truly. I’m hoping I’m can be effective in changing what seems to be a male trait,(not meant to be an excuse).

      • #17143
        Ally
        Keymaster

        Hi Curtis, your post tugged at my heart. You clearly love and admire your wife a lot, and that’s wonderful! I think it’s important to tell her that you recognize the immense stress she is under, caring for so many people, while also acknowledging the reality that you/your needs are part of that stress. Just keep those lines of communication open. It can be easy to appreciate someone and yet forget to vocalize that appreciation. If words of affirmation aren’t her “love language” figure out what is and communicate your appreciation that way. I would love to hear how things progress for you both. <3

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