Care Partners and Role Reversals

Family is not an important thing. It’s everything.

Michael J Fox
Ali Elder, Sharon Krischer and
Adrienne Keener MD

In Jnuary, 2018, I had the privilege of working with two amazing young women, Adrienne Keener MD and Ali Elder PT DPT, to plan the Los Angeles Forum for the Parkinson’s Foundation’s Women and PD TALK study. The end result was the creation of the first patient-centered action agenda to maximize quality of life for women with Parkinson’s disease. We worked together again to present a follow up program, Closing the Gender Gap, on Sunday at a local hospital. The event, sponsored by the Parkinson’s Foundation and [re+active] physical therapy, presented the research agenda for Women with Parkinsons based on the findings of the study.

An interesting thing occurred. We had originally planned to present this only to women with Parkinson’s. However, a significant number of spouses and carepartners came. So we decided that while the women were doing a reflective writing exercise, we would meet with the care partners. They were so happy to have a chance to talk about their issues that it became clear that having a support system for the care partners is just as important as having a support system for the women with PD. Before we could even ask a question,they immediately started talking, looking for answers and help.

It was an interesting group. Two young men were there with their mother and did not know where to turn for information or help. They were doing the best that they could, but really did not understand what their mother needed. They came looking to learn more about Parkinson’s Disease and how they could take better care of their mother. In contrast, there was a retired doctor who was very knowledgeable about Parkinson’s, but was at a loss about the dementia that seemed to be coming more and more of a problem for his wife. Different issues, same solution. They all needed to find out where THEY could get help so that they could be better care partners.

Many of the care partners were taking copious notes and it was clear that no one had asked them what they needed before. Our planned 10 minutes turned into 20 and the discussion could have continued the rest of the afternoon. We were very happy to help them in whatever way we could.

We had been so intent on talking about what is different for Women with Parkinson’s at our program that we forgot that the issues for their care partners are different too. The only thing that we said during our presentation is that the carepartners need to make time to take care of themselves. We did not consider how watching their spouse or mother with PD slowly decline would have such a profound effect on them. Just as the women experienced the role reversal of going from being the nurturer of their parents, spouse or children, the people we spoke to were also going through a change of identity in their new role as carepartner. Many of them were not ready for this.

There is some help on the horizon. When I spoke about the Facebook group for Women with Parkinson’s called Strongher Women, as a good resource for women with PD, founder Jen Parkinson noted that she will be setting up a companion site for carepartners in the near future.

And when I got home, catching up on my neglected emails, I saw an invitation from the PMD Alliance for an event for Care Partners, Adult Children and family or friends of those with PD and PSP next month in the Los Angeles area. How serendipitous! This was exactly what is needed. Just this morning I received an email from the Parkinson’s Foundation that they will be having a webinar on Coping with Dementia for Care Partners on November 5. It just shows that once you identify a problem, the means for a solution will turn up soon.

The main message that we stated over and over throughout the program, is that no one needs to be alone when fighting Parkinson’s Disease. We are there to support each other. And that applies to the Care Partners, too.

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

IMG_3664
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.

nessaweinman@yahoo.com