Meet fellow Caregivers - Introduce yourself

Hi @shortshot80 I, too, am very sorry to read of your loss. I wish you strength for the celebration of life and hope it is a soothing time for you.

Best of luck with your treatments! Fingers crossed for you!

May your memories provide comfort and solace at this difficult and sad time.

Peace.

Hi @tllaes,
You may also be interested to know that there is a Parkinson's Disease group on Connect: https://connect.mayoclinic.org/group/parkinsons-disease/

I'd like to introduce you to a few other people who are caring for a partner or family member with Parkinson's. Please meet @sandycerem @charlton11 and @melmaury

Tllaes, we look forward to getting to know more about you.

@shortshot80 Oh, Nancy,

I'm so sorry to hear of your loss. I'm sure that these past few weeks have been stressful for you and I hope that the June 2 Celebration of Life is a beautiful service.

I am glad to hear that you are doing well with the immune therapy. The fact that you have not been sick with it is quite a bonus and blessing! I will be thinking of you on June 2 and I hope that your memories of your 67 year, as well as your family, friends and church community will provide you with the support you need.

Teresa

Hello @tllaes

Welcome to Mayo Connect. My name is Teresa and I'm a volunteer mentor here on Connect and also have Parkinson's. As Colleen has suggested, I would also encourage you to join the Parkinson's discussion group at https://connect.mayoclinic.org/group/parkinsons-disease/.

If you care to share more about your wife's condition please do so and let us know how long she has had this problem and how she is doing. Also, important - how can we support you in your caregiving journey?

I look forward to hearing from you.

Teresa

Indiana Scott, Thank you for your posts and for being here as a mentor. I see much of my upcoming situation with my husband's Stage 4 cancer has already been experienced by you and your wife. I will be following you for support and guidance. My husband just turned 65 and has been given months to a year to live. Hopefully they are wrong and we're talking more like 'years'. I hold on to that hope, however misguided. I am just 60 and therefore we have financial concerns surrounding all of the medical costs. Not sure how I will manage all of that. But, I don't want to be so distracted by day to day concerns that I don't get any real quality time for my husband or become so tired and cranky that I can't be the caregiver I'd like to be.

Hi again @cindylb Thank you for the kind words. Keep the faith! In my wife's case the doctors gave her 7 years maximum and she fought for over 14. When she was prescribed hospice care they gave her 6 months or less. She was in home hospice for 14 months! I will hope for the same 'math' for your husband!

I know love can be an unbelievable fuel for the engine of us caregivers! I could never do what I did for my wife for someone simply for the daily pay. But my love for my wife was more powerful than my exhaustion, frustrations, and feeling of being overwhelmed. Not everyday and not every hour, but for the long haul.

At times my wife had to call me a couple of times before I came to her bedside some days when other demands interfered. It always seemed like she needed me most whenever she heard the bathroom door click shut 🙂

Caregiving comes with no employee manual, no pay, no training, etc., but at least it comes with the benefit we get from those periodic smiles that spread across our loved one's face when we meet one of their needs.

By the way....tired and cranky come with being a caregiver! But then again whispering "I'm so sorry I'm a bit tired and cranky today, honey" seemed to be a pretty good balm!

I look forward to staying in touch as you move along though your and your husband's journey. Good luck with the second opinion.

Strength, courage, and peace!

Hello, Amy. Thank you for posting. How are you doing tonight?

Can you talk more about your son? When did he sustain his TBI?

Hi everyone,

I'm really excited to tell you about @IndianaScott's story, that was just published on Experts by Experience – https://socialmedia.mayoclinic.org/2018/01/30/experts-by-experience-what-patient-narratives-tell-us/ – a series of columns written by patients and caregivers from around the world.
You can read Scott's story, titled "The Choice and Challenge of Being “Good Enough”- A Caregiving Story – Experts by Experience" here:
https://socialmedia.mayoclinic.org/2018/06/01/the-choice-and-challenge-of-being-good-enough-a-caregiving-story-experts-by-experience/

Thank You for the warm welcome. I am Diana, live in S W Michigan, the fruitbelt and home to many grapevine and wineries. We are orig from Chicago. Husb has PPA Alzheimer's. Diagnosed 3 years ago. I'd appreciate chatting about caregiver techniques and just have a bit of support. I am getting some support from family. 3daughters and a son. Girls' husb are gems and close by. But they have their own young families or grand kids to cater to. Son lives 2 hrs away, and is busy with "happy wife happy life", but she is a great person. Hope I don't sound too self centered but having issues,with depression and anxiety. Looking forward to chatting

Hello Dorothy. What stage is husb in? Mine is hard to judge. His started with not finding his words and now is not able to express at all. Very difficult not being able to understand his,needs. I guess a lot.