What does it mean to be a Parksinon’s disease care partner?

Being a care partner for someone with Parkinson’s disease (PD) is a whirlwind of challenges, responsibilities, setbacks and victories. It is a very difficult, but potentially very rewarding role. Knowing that many of you reading this are trying to navigate the complexities of being a care partner, we thought it would be helpful to  hear from others in your situation. If you haven’t already, you might find that reading our Becoming a Care Partner overview will be helpful as well.

For today’s blog, I spoke with three care partners to bring their unique perspectives to our readers who might be grappling with similar issues. Remember, every person with PD is different, their disease progression is different, and each care partner is different – so keep that in mind as you read on. But despite those differences, we think you will find helpful advice, bits of inspiration, and some solace in their stories. All names have been changed for privacy.

 

Q: What is the most gratifying part(s) of being a care partner for someone with Parkinson’s disease?

Ellen: We have developed a deeper connection and bond. I have also grown personally by taking an active role volunteering with APDA.

Gary: We live with Parkinson’s disease together. We are continually adjusting to this new norm. One priority is a daily exercise routine.

Brenda: I find that the most gratifying part of being a care partner is the intimacy that occurs in providing necessary care for someone you love.

 

Q: What is the most challenging part(s) of being a care partner?

Ellen: Staying patient and positive. It is difficult to know when to push him and when to back off.  I want to continue to challenge him, but it is sometimes difficult to know what he is capable of.

Gary: Anticipating my wife’s needs to keep her safe on a 24/7 basis…I can never let down my guard.

Brenda:  I would say there are three things that I find the most challenging: 1) Being responsible for EVERYTHING. I still have all my responsibilities from before PD and now I also have to do EVERYTHING my spouse once did. 2) Knowing that I cannot cure or stop my spouse’s disease and I can’t take away his pain. 3) The loneliness of my spouse’s unavailability to share and discuss issues – especially as the dementia increases.

 

Q: Do you get help from family, friends, neighbors?

Ellen: My husband is pretty self-sufficient, so I do not feel the need to ask for help at this point.  He is ambulatory but struggles with balance. Fortunately, he does not fall. He has had some mild cognitive decline and I worry most about that.

Gary: Yes, they are always available in any circumstance.

Brenda: Yes – we are blessed with WONDERFUL FRIENDS and some family members. They check in and do what they can.

 

Q: What keeps you going in the tough/challenging moments?

Ellen: Remembering to take a breath and physically give myself some space. I try to find some humor in moments. And I try to put myself in my husband’s shoes. It makes me stop and think – how can I be more supportive?

Gary: We have a strong faith and love with a respect for the space that each of us need in our journey together.

Brenda: Empathy – whenever I think it is hard for me, I think how much harder it is for him. His life is dramatically altered, while I still have some normal routines.

 

Q: What is your favorite activity to do with your partner with PD?

Ellen: We enjoy good food and wine, so have been trying to put extra effort into meals since we are not dining out due to COVID-19. We also enjoy the arts but have been more limited with COVID.  We have been able to find streaming concerts online.

Gary: We enjoy preparing and sharing meals, walks, exercising, solving problems and playing Gin Rummy.

Brenda: We love to share meals and watch TV together.

 

Q: What are your strategies to find time for yourself?

Ellen: I plan small outings with my mother and or sister. I also try to make time for things that make me feel good (i.e. get a pedicure, etc.)

Gary: I have my time for exercise, reading, praying.  You must find time to just do it!

Brenda: I get up by 5:30 in the morning to meditate or do some kind of physical activity: walk with friends, yoga, Pilates, weights.

 

Q: Have you ever attended a care partner support group?

Ellen: I have not attended a care partner support group as a participant but I have a network of other care partners that I can always call for support. I myself am facilitating a new care partner support group. I believe that support groups, or a support network is essential for maintaining your mental health.

Gary: Yes, my support group meets monthly for an hour of sharing. This could involve the care partners and people with PD together, while sometimes the two groups meet separately. We have a volunteer group leader who helps guide the discussion. She is respectful of the struggle of some of the members as they express their questions and needs to the group. It is interesting how the care partners lovingly support and help their partners to express themselves.

 

Q: What are your thoughts about the future?

Ellen: Thinking about the future is scary. My best strategy is to take one day at a time. I find it difficult to plan when you are uncertain of the PD progression. I know I should not live in fear of what may or may not happen, but we are far enough into this that I am certain we will encounter more significant challenges.

Gary: We feel positive about the PD research being done around the country.  We have enjoyed participating in a number of studies and research projects.

We are all challenged to adjust to the evolving new norm of being a care partner. It is hard to forecast what the future will hold, but we need to try to stay in touch with our PD community through phone calls, cards of encouragement, FaceTime and Zoom meetings. We try to listen and share hope as well as the pain of loss.

We also have discussed the importance of sharing my wife’s brain after she dies with a ‘Brain bank’.

Brenda: It’s scary, I try not to plan too far in advance, although there is a part of me that thinks about it daily. I was caught off guard several years ago with a rapid decline in my husband’s condition and we had to move immediately to a one-story space.  I ordered a walker and then his first wheelchair – just to be ready. Now, my husband has part-time caregivers while I work full-time. Close friends express serious worry about my health – I am under constant strain arranging his multiple appointments – dentist, Botox, podiatrist, urologist, internist, neurologist, physical trainer, lunches with friends, social contacts and many more. I also have to organize a series of caregivers, which has been especially difficult during COVID. All that, while working full time to take care of our bills.

 

Q: What challenges/strategies do you have to share about being a care partner for someone with PD during the COVID-19 pandemic?

Ellen: My husband is generally content staying around the house and does not seem to miss the social interaction as much as I do. I have made it a point to phone friends and family and catch up, which has been nice. We do Zoom visits and happy hours and some small family gatherings.

Gary: Our focus is to stay safe by gaining credible information and following the guidelines suggested.  We are sensitive that we are part of a high-risk group which also further limits our movements and outside activities. We feel that regular exercise is key to our movement, balance, core strength and positive attitude in living well.

Brenda: 1) Find time for self-care – whatever that means to you. I exercise and take comfort in the intimacy of a couple of close friends.  These things make me feel that I’m doing something constructive, something I can try to control – when so much is out of my control. 2) Learn to be flexible! Take one day at a time. Sometimes, one hour at a time. Plan activities, but know that they may not happen. Before COVID, we made plans to see friends, even if we cancelled at least half the time. Everyone knows that we are always a cancellation risk – and they understand. During COVID my advice is the same. The only big difference is that we used to be able to actually SEE PEOPLE and now we must use Zoom.

 

Q: What tips would you want to give other care partners?

Ellen: Develop a network of friends or family who you can honestly talk to. I always feel better after I have a good talk. Try to keep your partner active physically and mentally. I know this can be a challenge sometimes.  I am fortunate that my husband really enjoys exercise and continues to have a positive attitude. I think physical therapy can be very beneficial too.

Gary: Eat nutritional meals, exercise, be as supportive as you can during bad times and good times, make time for yourself, plan activities that you can do together that challenge your brain, help your partner stay on top of the medication schedule, and keep a sense of humor.

 

Tips and Takeaways

• Being a Parkinson’s disease care partner is a challenging and rewarding role.
• It is important to find a support network through family and friends, or through an organized support group.
• APDA is here to help with information, education and support at every stage of your care partner journey. Contact us at apda@apdaparkinson.org or 800-223-2732.
• Register for the October 19 session of Dr. Gilbert Hosts in which Dr. Gilbert will interview Lianna Marie, a trained nurse, PD caregiver, PD advocate and author, for a conversation about caregiving for PD.