I Failed at Caregiving 101 and a view from a Caregiver

The other thing I’m going to do is to LISTEN better to my body and treat my health with the same priority that I give to those I love.  Nessa Weinman

Last Friday, Mr. Twitchy had rotator cuff surgery and I became the caregiver for him. I was fine the first few days. He was in a lot of pain and needed a lot of help. And then I failed. FAILED at Caregiver 101. Big time! I am not sure if it is the Parkinson’s but as he got better, I just could not focus on my caregiving responsibilities.He went to take a shower, I went downstairs to get something and forgot to come back upstairs to help him. And that was just the beginning. Things continued to get worse as the day wore on.

When I was working on the Women and PD TALK study with the Parkinson’s Foundation, I had the opportunity to interview women with PD around the country. A number of them were in the role of caregiver for an ailing spouse. Many of them talked about how difficult it was for them to take care of their own needs with PD and be the primary caregiver for another person. Honestly, I don’t know how they do it long term.

Caregiving takes its toll on many spouses, even those who do not have Parkinson’s. Nessa Weinman, whose husband, Mike, has Young Onset PD, is a fixture in the Los Angeles Parkinson’s community. What follows is her story of the toll that the stress of caregiving can have on the caregiver.

A Caregiver Lesson Learned

by Nessa Weinman

The risks of being a caregiver is that we are HUMAN BEINGS and sometimes we get sick. Almost every caregiver I know puts their loved one’s health above their own. I care for my husband who has had Parkinson’s for 19 years, he was diagnosed when he was 36.  He’s had deep brain stimulation surgery, two seizures, a number of falls that have sent us to the ER and his colon burst and he became septic and gravely ill. All this and we are only 55.

I’m active in the Los Angeles Parkinson’s community and for years I’ve volunteer to run two support groups a month for caregivers and people with Parkinson’s. I often attend a caregiver’s group and participate in an on-line caregiver group.

I think I take care of myself, I go to the gym 2-3 times a week, take walks, I keep up with my mammograms and I eat mostly organic and healthy. But, since Thanksgiving I haven’t been feeling very good. I got an UTI (urinary tract infection) that wouldn’t go away. I started self-diagnosing myself and using over the counter or homeopathic treatments. Come March I realize I’ve been hurting for a long time. I saw my GP, an Urologist, a Gynecological Urologist and nobody could accurately say why I was hurting so much. By the time a doctor gave me a prescription for antibiotics for another UTI it was too late. That night and into the next day I was vomiting nonstop and had

Nessa and Mike Weinman

a high fever. My husband insisted we go to the ER and my son and his friend got us there and me inside.

I had a bad UTI, and a kidney infection and was admitted to the hospital. After 2 nights on IV antibiotics, my liver enzymes began to spike which added 2 more nights in the hospital. After the liver specialist changed my antibiotic, my liver enzymes began to lower.

Finally, we were able to leave the hospital and begin to acclimate to being home again. But then I wasn’t much of a caregiver, and my husband and sons helped to take care of all of us. I was still in a lot of pain even after I got home. I followed up with my GP a few days after I got home and I told her I suspect a yeast infection. She didn’t think so but I made her swab for a culture. An agonizing few days later the test was positive and I had another infection. I don’t mean to be offensive to anyone, but my poor vagina had been through a lot. I had pain that was worse than the aftermath of giving birth (to 3 sons).

After my physical symptoms resolved, my emotions were completely out of whack and I dealt with high anxiety, depression, fatigue and apathy. My mom, husband and 2 sons along with 3 friends visited me in the hospital, but I didn’t receive support from many other “friends”. I didn’t want to burden my Parkinson’s Support Group members with my problems, but in retrospect I should have. They would have helped with food, driving my husband and keeping me company – BECAUSE THESE ARE MY PEOPLE. Even though they are busy, they understand me, love me and support me. It was silly not to reach out to them, I’ll remember that next time.

The other thing I’m going to do is to LISTEN better to my body and treat my health with the same priority that I give to those I love. Lesson Learned.




2 responses to “I Failed at Caregiving 101 and a view from a Caregiver”

  1. Thanks Sharon. I’d like to say I’m better but I went to urgent care and i have another UTI and bad diarrhea. Sad but true. I will be following up with a urologist soon after I finish my antibiotics. Love, Nessa

    Sent from my iPhone


  2. Janice Scissors Avatar
    Janice Scissors

    Sharon, you didn’t fail in caregiving 101. As Mr. Twitchy got better you just started reverting back to taking care of yourself. Which you do a fabulous job because you don’t want to become a burden to him or other family members. It’s not easy being a caregiver for others and a caregiver for yourself at the same time. That’s a heavy load to carry. I’m sure Nessa is feeling that right now also. A good rule to follow is what the flight attendants say before each flight, you have to put your own oxygen mask on before you can help those around you. Otherwise you won’t be in any condition, physically or emotionally, to help them. I’m sure Mr. Twitchy has already forgiven you.

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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.