Meet fellow Caregivers - Introduce yourself

I am the care giver for my wife who has Parkinsons. I look forward to hearing from others who are sharing the same role.

@myson, I am a liver/kidney transplant recipient (2009). I want to extend my sincere welcome to Mayo Clinic Connect. Both me and my husband know how slowly time moves prior to transplant. It is as if the clock has quit working, and that is compounded by all of the caregiving necessities.

Whatever the organ involved, we all experience very similar emotions and stress. I invite you to the Trans[plant Discussion where there is an active discussion going on with other organ transplant caregivers. Read thru it, join in with questions, or begin a new discussion. Do not be concerned with 'liver caregivers' in the title.
https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/
I look forward to hearing from you and from others as we support and encourage each other.
Rosemary

Thank you Rosemary. I will do that. God bless you.

Let me say welcome to Mayo Connect, @tllaes Thank you for coming here to this group! I am Scott and I was my wife's caregiver, although she did not have the same journey your wife is on. I am sorry to read of her diagnosis.

If I recall correctly there are other caregivers here on Connect who are caring for loved ones with Parkinsons.

No matter the diagnosis our loved one or patient has received, their journey as well as the caregiver's journey is never an easy one. One of the best aspects of Connect is the willingness for caregivers to e-gather here and share their concerns, trial, tribulations, and triumphs. I believe you will find this to be a bunch of folks who enjoy listening, sharing, and giving hints and tips on how to manage caregiving and to try and make caregiving a bit more manageable for each of us.

If I may ask, what has been your biggest challenge as a caregiver?

Courage, strength, and peace!

Hi Colleen, I am (shortshot80) Nancy... haven't been here for couple weeks. My husband of 67 years passed away on May 4. We are having a celebration of life next Saturday June 2. Last couple weeks have been stressful for me. House is lonely. I know things will get better, but! I have had two sessions of immune therapy for my two kinds of lung cancer. Have not been sick either! Blessing! Have another session on Tuesday 29th. Then perhaps I can get in here a little more often. This helps some!. Thanks for listening. Nancy

Sorry for your loss. You are sure going through a lot with your treatments on top of your transition. Praying that the celebration of your husband’s life is an encouraging time for you.

Not sure I'm on your list but have written before. My husband is in hospice, very expensive. Any thoughts?

Hello @braves11 I am @IndianaScott who @colleenyoung referred to in her response to your post. I am sorry I did not see your post until now! Sorry for the delay in responding to such an important and unfortunately frequent issue with caregivers of interrupted sleep!

You are totally correct in how debilitating interrupted sleep can be for caregivers! Throughout her life my wife was never a sound sleeper and often would be up at odd hours. Unfortunately this really heightened with her disease progression. We were told by her neuro doctors that personalities of brain damaged individuals, which in her case was caused by her cancer, can exacerbate existing personality traits.

I know each individual's healthcare journey is unique, but in my wife's case for the last year plus she needed medicines first twice a night, then up to every two hours round the clock. My sleep pattern disturbance was a tough one to manage and I am still not back to a regular sleep pattern.

I am no medical professional, but having lived through caregiving, perhaps having someone come in a couple nights a week to do night duty would help? Or maybe weekend nights to give yourself a break and a chance to get a couple solid nights' sleep.

Decisions such as alternative care are never easy ones, but as I also like to say "Superheros only exist in comic books! Even Superman and Wonder Woman weren't ever caregivers!"

One great thing about Mayo Connect is how many folks have gone through similar caregiving situations and perhaps someone here can chime in about making decisions to move their loved one to a care facility.

I send you strength, courage, and peace!

Hello @minnesota From your screen name I am guessing we may be in the same state right now! "Enjoying" 90 degree temps up here in the north woods already!

You are indeed 'on the list' here at Mayo Connect and a part of the Caregivers discussion group.

My wife made the decision for home hospice care when it was prescribed by her neuro-oncologist. He thought it would be a two month-six month situation and she fought on for 14 months, I agree with you that hospice care can be expensive, but at the same time it was one of the very best healthcare decisions my wife ever made and I thank her doctor for fighting the good fight to get her GP to accept his prescription for hospice. She wanted the home option so we did that.

Most of the other patients in hospice at the time my wife was were either covered by Medicare or Medicaid. She was too young for Medicare and until the ACA (Obamacare) was introduced we were without health insurance since I was unemployed and the only private insurance I could find would have cost us $98,000 a year due to her preexisting cancer. I am still paying off the last of her bill from that first six months. I also will say we gave up a lot, but never regretted the choice of hospice care as it bought much

If you have insurance, do you have any coverage for hospice in your insurance? We had two organizations offering hospice care in our home community in Indiana and I did also learn their costs were a bit different for each. Is your husband a veteran? I believe the VA has some hospice benefits too, but do not know that for sure.

I guess rather than going on and on here, I should simply ask what have you looked into to try and get some financial support for the cost of your husband's hospice care?

Strength, courage, and peace!

@shortshot80 Nancy, so sorry to hear about your Husbands passing. 67 years of marriage- that's amazing! I can only hope to be blessed to be with my husband for that long. We are going on 15 years this November. I cant imagine the stress and loneliness you have been feeling and hope those feelings subside as you settle into your new normal. I'm sending you thoughts of comfort and hope today. We look forward to hearing from you when you are ready to return.