We hosted a family get-together yesterday. Normally I let these events stress me out, but this time I decided to take a more casual approach and it worked. We had a chili feed so all I needed to make was a huge pot of chili and some corn bread. It was our immediate family, and they know me well, so I decided that deep cleaning the house wasn’t really necessary. Most of them have lived with me at some point so they know my standards and should be comfortable with them. Finally, I set things up and let them run instead of trying to control it all. The food and drinks were out, from there I let the evening flow. It was great fun to see everyone and hear what was happening in their lives. The best part was that my husband was an active participant. I believe he enjoyed the event as much as I did.

We are coming up on the holiday season. My hope is that we can continue with the monthly get-togethers instead of the big holiday bashes. The goal for me is simply for my husband and I to share some time with the ones we love. It works for our kids too because it frees them up to create their own celebrations. The bonus is that we have a set appointment each month that people can plan around. If someone can’t make it this month, well we’ll see them next time. It gives us all the opportunity to stay connected beyond the holidays in a fun and loving way.

I get tired of having people tell me to take care of myself, yet I know they are right. I especially get tired of hearing that mindfulness is the way. I think that we all have to find our own comfort zone and for me it’s writing. I have been journaling daily for five years and writing this blog for three years. For someone else it might be meditation, photography, painting, cooking, or gardening. Whatever it is that gives you that feeling of relief, of accomplishment, of joy, do it!

It can be challenging to make time to do anything for myself. I usually write while my husband takes his shower in the mornings. Thankfully he is able to manage alone but needs me close. I do help some when it’s time to get dressed, but that only takes a few minutes. Once he’s ready, I can get a little more time for myself while he rests or works on his computer. He takes afternoon naps which give me another great opportunity for me to sneak in some writing. Using any open time for things I like to do rather than chores makes my day go so much better.

I hope that all of us have something we do that gives us peace. It doesn’t have to be anything grand or time consuming, even just a cup of tea or coffee in a quiet spot can be relaxing. Writing serves as a release valve for tensions and a constant companion for me in both good and bad times. I want to encourage you to uncover your release and find time daily to do it. Be persistent. We all need those breaks and can only find them if we look.

Parkinson’s is a horrible disease that takes a bit more away from my husband everyday. There will come a time when I need additional help beyond what our current medical team can offer. I need to know what supports are available to us as we struggle and understand what each of those mean. I have heard of palliative and hospice care and want to arm myself with information so I can make good choices when the need comes. What are the differences between the two, when should I be looking at them, how do I make sure it is the right decision?

We hear a lot about palliative care and how it can be helpful at any stage of my husband’s illness. I really don’t think I have a good idea of what that would look like. According to the website for the National Hospice and Palliative Care Organization “it is patient and family centered care that optimizes quality of life.” I mentioned it to our primary care doctor once and was told that we aren’t ready for it yet. It makes me wonder if anyone really understands what it is all about?

I had the opportunity to speak with a former hospice nurse the other day which was somewhat enlightening. She spoke about her past career and how wonderful it was for her to be able to help people face the end of their lives in comfort and peace. She mentioned the importance of getting them off all the toxic medications they had been taking to give their body a chance to rest. This was interesting to me as I realized that perhaps I had the wrong idea about hospice. I didn’t realize that one of the requirements of receiving this service is to accept hospice rather than curative care. I am not sure what that means.

Basically, I think that when the time comes for us (or me, as the case may be) to make these difficult decisions about care, it will mean asking hard questions. I will need to understand what their philosophy of care is and how they plan to implement it. If it’s palliative care, how do they define optimizing quality of life and how will it change what we are doing? If it’s hospice care, what does removing curative care mean to them? How much power do I give over to the nursing staff in each situation? Will they be making life altering decisions for my husband? Am I really ready to let go?

For more information check out- Palliative Care and Hospice: 5 Tips for Advocating for Yourself and Your Loved One | Parkinson’s Foundation.                                                                                                                                   

It’s the time of year when I am reminded to be thankful for the good in our lives, but I don’t always remember to thank myself for the good things I do every day in my role as CarePartner. I used to work in a job where I helped other people find and acknowledge their strengths, now it’s my turn. I need to look inside to see what it is that keeps me going, how I manage to make it through regardless of the challenges that pop up, and I need to be grateful.

If I were to make a list of my strengths, I think that organization and resilience would be at the top. I hope that loving and compassionate would also make the top 5 perhaps followed by determined. I know that I am hard-working and try to be kind and fair. I am usually optimistic and would love to add patience to the list, but I am afraid I would be lying. Patience is my biggest personal challenge and the strength I need to grow the most. I would close out my list with curious as I love learning new things about the world I live in and the life I am leading.

It’s easy to see how these strengths impact me in my role of CarePartner. I have to be organized and hard-working to make sure things get done, an optimistic and loving mindset helps me stay calm, resilience lets me jump back in when things go awry, curiosity brings me new solutions for problems I face. My compassion, kindness and fairness are the gauges I use to temper my reactions to the challenges Parkinson’s brings to our lives. When I am feeling overcome, I will take a breath and be grateful that I have the strength, I can make it through. I will thank myself because I am strong enough for whatever this life brings.

There are things that my husband asks me to do that I just hate. It may be that it is something difficult or it may be that I just don’t feel qualified doing it, yet I find myself going ahead anyway. What I recently figured out, with the help of a good therapist, is that when I go ahead and do those things I hate, it can make me resentful. Unfortunately, that resentment expresses itself towards my husband, not the disease that has brought us to this point. That is not fair to him or to me.

I don’t intentionally resent him; it happens without any conscious awareness on my part and can build up over time. The question my therapist asked was, if there are things I hate to do for myself, why on earth would I be doing them for someone else? Why wouldn’t I be looking for alternatives? And there usually are alternatives whether it is trying a different approach, using a different tool or actually hiring someone to do the more complicated things.

There will always be difficult things that I have to do for him and for those things I will need to adjust my attitude. If I take a moment to think about all the things he has done for me, all the things he has brought to my life, even all the things he would be doing for me if the situation were reversed, I can have a more thoughtful and positive approach. As someone recently pointed out, some things I do because I love him, not because I love the task. Love outdoes resentment every time.

My husband does so well that I really didn’t think of “off periods” as a problem. He struggles with stiffness and shuffling in the mornings, but doesn’t everyone? Then, I was speaking with someone at a recent conference, and they explained that those morning struggles are a classic example of being “off” his medications. They suggested we look at a newer intervention called “rescue meds” which deliver a small dose of Carbidopa-levodopa by inhalation. The medication gets into his bloodstream and brain faster so he is better able to move within a few minutes. I never really considered that my husband might need to be rescued before he even starts his day.

I came home from the conference excited about a possible solution to what I thought was an issue for us and shared it with my husband. He admitted that he is stiff in the mornings, then pointed out that something that takes even 10 minutes to work won’t make a difference. He told me that the reason he gets up early to take his meds and then returns to bed is so that they will have time to take effect before he finally gets up. He was appreciative of the information about the rescue drug and that I cared enough to be looking into it, but he doesn’t feel he needs it at this time.

The real issue for us was my assumption that because something bothered me, it was also a problem for him. I was reminded that, while we are sharing in this journey, he will be the one taking the lead when it comes to treating his disease until he can’t anymore. I can gather information and share it, but he gets to make the decisions as long as he is able, and I want that to be a very long time.

My role of CarePartner for someone with Parkinson’s Disease has much in common with my friend whose husband has cancer or my cousin who is caring for her elderly mom. While there are great resources that speak specifically to the needs of caring for someone with PD, there are even more resources available when I research my role of family caregiver. People have been providing care for loved ones forever, I need to be open to tapping into that wealth of knowledge for help in my journey.

When I look at the traditional PD sites such as Parkinson’s Foundation or APDA, the American Parkinson’s Disease Association, I am putting his needs ahead of mine. If I instead visit sites that are specific to my role in this journey, such as the Family Caregiver Alliance or even the National Institute on Aging, I find relevant information written to make my life as a CarePartner easier. And, of course, there is a ton of great information provided by AARP in their Family Caregiving Guides.

I don’t want to downplay the importance of having disease specific information, but much of what I do goes beyond PD. Self-care, coping skills, even resources for basic needs are all bigger than his diagnosis and it is important that I not limit myself when searching for the support I need. One of the most impactful activities I have ever participated in was a holiday celebration of all caregivers, something I would have missed out on had I not looked beyond the obvious. My needs as a CarePartner are not PD specific, I need to remember that fact when looking for solutions for me.

It happened just last week. I had lunch with a friend from my CarePartner network on Monday, there was a virtual support group and an appointment with my therapist on Tuesday, our breakfast group on Friday and a half-day CarePartner summit on Saturday. That’s a lot of support for one week and, while there may be times when I would need that much support, it really felt like too much. Just as Parkinson’s Disease can take over our lives, I wonder if CP support doesn’t do that sometimes?

I am learning that it is important for me to be choosy about the activities I participate in. My self-care and support needs vary depending on the day, my mood, even my energy level. There are times when I feel like I am doing great and all I need for myself is a brief walk outside or a few uninterrupted minutes with a good book. Then there are those times when I really need to talk to someone, to hear another person say they understand and that I am going to make it through no matter how hard it gets. There are times when solitude gives me peace and times when I really need the comfort of being in a compassionate and caring group of partners. Above it all, I need to know that both of these options are available to me during my journey.

I need to be conscientious and intentional about my self-care and the support activities I participate in. I need to remember that my being there helps not only me, but my fellow CarePartners too. I need to fully engage because if I am just going through the motions, I am cheating myself of the benefits. And, I need to be mindful because not everything is going to be helpful and I just don’t have enough time for those things that are not. As a friend once told me, “If it doesn’t make me smile, it’s gone.” Granted she was talking about the plants in her garden, but isn’t this a great measure to use for the things I do in my search for serenity?

Parkinson’s Disease is so different for each person who has the diagnosis and that often means that we, as their CarePartners, will be asked to face unique challenges. It used to surprise me when something new popped up, but over the years I have developed a strategy that helps me deal with those unexpected events. It always starts with me stepping back to take a breath and see what is really happening. Then, I utilize a three-part strategy to look for an answer that works for us.

The first thing I do is define and acknowledge the challenge. Who owns this challenge, is it mine or my husband’s? In other words, should I step back at this point and leave him be, or step up and try to find a resolution? If it’s mine I move on to the next piece, seeking a reasonable solution. I may discuss the issue with my husband, maybe not, it really depends on the situation and whether I feel his input would be necessary. There will be trial and error as I strive to find answers that we can both live with, and that’s okay. Once I settle on a solution, the final act is to implement it and move on. I need to make peace with whatever decision I make because there will be another challenge tomorrow and this one needs to be done.

It’s not always easy for me to stop and think clearly when things are going haywire. I am a fixer; I like to jump right in and take care of things immediately when they happen. I have learned that this can make the situation worse. Taking the time to lay out a strategy, and remembering to use it has made facing the daily challenges much better. I wouldn’t expect my strategy to work for everyone because, as I mentioned before, every CarePartner faces unique difficulties based on what their Person with Parkinson’s faces. I would, however, suggest that everyone needs to consider creating their own strategy because acting with intention is always better than reacting with panic when things go wrong.

Being a CarePartner is difficult, but the good news is that we don’t have to take on this task alone, there are just too many resources out there to support us. National foundations that provide support for your Person with Parkinson’s also have information for Partners. Even more important to me are the regional and local supports that are available. There is nothing so wonderful as sitting across the table from someone who really understands what I am facing every day as a CarePartner because they live with someone with Parkinson’s Disease too. In this journey, connections matter.

I won’t try to name the many different resources available; I just encourage everyone to look for help. It was years of struggling before I finally got smart enough to look. Then, a quick internet search for me and I found national organizations as well as state resources. Contacting our closest state resource gave me local names to call. Within a few hours I was talking to someone in our community and making plans to attend our first PD support group meeting. I couldn’t make it through my days without my network of support. I often find myself thinking about them and remembering tips we have exchanged.

In case you are still unsure where to start, here are a few websites that I find particularly helpful- Parkinson’s Foundation, www.parkinson.org; Davis Phinney Foundation, www.davisphinneyfoundation.org ; and the Michael J. Fox Foundation, www.michaeljfox.org. All of them have information for families and Davis Phinney’s wife Connie actually leads a monthly virtual support group that I enjoy. Again, the best support comes from those who are also living the life and I find it in my local network. Know the resources and use them, they can make your life as a CarePartner much easier as we all share the journey together.