I was reminded of this recently when I came across a tip for CarePartners that suggested I replace the word guilt with regret. Rather than hold onto guilt about something that happens or a decision I make, the concept is to have regret about the situation, remember that I’m always doing the best I can and then let it go. I like this idea and wondered where I could apply similar tactics in my role? 

What about those days, I had one yesterday, when I am exhausted and just don’t want to do anything? What would happen if, rather than feeling bad about what I am not getting done I acknowledge that I’m having a low-energy day and give myself a break? When I was still working I called them stress relief days and it was all okay, can’t it be the same for me now? Giving myself permission to rest and recuperate is a lot better way to face my exhaustion than denying it and trying to power through because it will eventually catch up with me.

Difficult challenges can become opportunities for growth, giving up certain chores or finding shortcuts can be working smarter not harder, instead of always answering with yes I can say no, not now as I learn to take better care of myself. It matters what I say to myself because those thoughts live in my head. They can either reflect the hard work I am doing in a positive and reaffirming way or they can be negative and leave me feeling like I can never do enough. I know which mindset brings me the most peace.

Have I got your attention? One study found that the stress involved in our role can put elderly CarePartners (those of us over 65)  at a more than 60% higher mortality rate than our non-caregiving peers. That means that almost 2/3rds of us are cutting our own lives short while trying to help and prolong the lives of our loved ones. We didn’t ask to be put in this position, we all accepted it willingly and do it lovingly; it just doesn’t seem fair does it? What can we do to reverse this alarming trend? We’ve all heard it before, but seriously, we need to figure out how to take care of ourselves first.

Many components of good self care are basic things I already know about. It’s important for me to learn about Parkinson’s Disease and keep current on developments that might impact his care. It is necessary for me to find community resources and support and then utilize their services. I must find time for myself and my own interests. Some of that should be spent away from our house and the responsibilities of my role. I can’t ignore my own health so I will make and keep all my own medical, dental, vision and other appointments. Finally, I have to participate in activities that will lessen the stressors in my life whether that means daily walks around the block or getting to my yoga class every week.

I know the biggest barrier I face in trying to care for myself is time. There just aren’t enough hours in the day to care for my house, my husband and me. If I want to be here to take care of him, I am going to have to find help with some of the chores, carve out protected “me” time and make a conscious effort to prioritize my own needs. It may not make a big difference in the long run, but I can hope that maybe I’ll be one of the lucky third that is able to provide care for my husband without literally killing myself doing it.

For more information on the risks we all face as CarePartners, visit “Caregiver Health” on the Family Caregiver Alliance website. To learn more about how to alleviate those risks, visit “Caregiver Self-Care: Caring for You” on that same website.

We spent the afternoon with family yesterday and it is always nice to get together and catch up. I have a sister who is a few years older than me and I sometimes find myself playing the comparison game. She and her husband are very involved in their local Church, they sing in the choir, they garden together, they provide care for their granddaughter, they have a very active life. The contrast between where we are in life makes me wonder if one of us wasn’t adopted?

It’s really not fair to either of us when I do this comparison because we both have developed our talents and our lives based on circumstances we have faced. We are both amazing women who are living life as best we can. And we do share some basic values that were passed on from our parents. When it comes to politics and religion, we are mostly in accord. We both have generous and caring natures. We are both survivors and will get through whatever life throws our way.

This may seem like a slightly different take on my role of CarePartner, but what I am really getting at is that I shouldn’t dismiss what I have or what I am doing because it is different from what I see in others around me. I use my sister as an example but there is a whole world out there of people who have different lives based on different situations. It does me no good to try to emulate them nor to be envious because I think they have it better than me. I don’t know them or their challenges, I just know my own. As long as I remember to be grateful for the relationship I have with my husband and keep doing my best each and every day, then I must be living the right life for me.

I don’t often take the time to think about it but my husband’s illness has brought some positive elements into my life. I am stronger and healthier than I was before this journey started. I am more aware of my own capabilities and have found I can do much more than I ever imagined. I find contentment and even joy in the little things I missed in the past. I have a wonderful network of friends, people I only meant thanks to his diagnosis.

My health has improved because I know I must stay healthy to care for him. When we learned that exercise was the only way to slow the progression of PD, he started going to the gym and I became his coach. I am still exercising more alongside him, which is really good for my physical and mental health. Wholesome meals are important for both of us and I enjoy cooking more when exploring new dishes or rethinking healthier versions of old standbys. I have taken over many new tasks around the house and find a sense of accomplishment, and even pride, when I tackle something challenging and make my way through.

I am not saying that I would have chosen this life for us, Parkinson’s is not an easy or pleasant ride. It has, however, brought some surprising benefits. I am learning new skills, I am stronger and healthier, I am connecting with my husband in different ways and I am surrounded by people who understand and care. Being his CarePartner has made my life fuller, richer and reminded me of what matters most in life, rewards I never expected when he was first diagnosed.  

This is Mother’s Day weekend so perhaps that’s why my mother’s been on my mind lately. She was a decent Mom with a couple of challenging daughters and, I’m sure, she always did her best. Once we were grown and out of the house, she became a Parkinson’s CarePartner where set a pretty good example for me, but there were a few things she never shared. The top three that I had to learn for myself are that it’s okay to say “no”; that it’s okay to put myself first; and that it’s okay to ask for help.

I don’t think my mother realized that you could say no to other people, she lived in a community where you helped your neighbors and that was that. And, everyone else’s needs just naturally came ahead of your own. She spent her life caring for others and never put herself first until after my father died. Asking for help was almost impossible for this woman who had always been the helper and she really struggled when faced with things she couldn’t do. I think that’s where my “can-do” attitude comes from, but I have found that it’s not always a good thing.

Teaching myself to slow down and carefully consider my capabilities before saying “yes” to anything new makes saying “no” so much easier. Recognizing that unless I take care of my own needs, I can’t provide good care for my husband is eye opening and means that I must put myself first much of the time. Finally, and this has been the hardest lesson of all, I know I can’t do it all and must ask for help sometimes.

Being a CarePartner is challenging and has me rethinking some things I’ve been taught all my life. My mother did what she could, now it’s time to be grateful for her lessons as I work to make my own path. The one principle that she shared, and that I will always follow, is to do my best in any situation my husband’s diagnosis creates. It’s the least Mom would have expected from me and who doesn’t want to make their mother proud?

I have been keeping a journal for over 5 years now. At first it was a place where I could vent and rail about my husband’s diagnosis. It was a safe place to complain about all the changes we were facing and perhaps, in writing about them, find better ways to cope. Many of those earlier entries were full of anger, frustration, sadness, the losses I was experiencing. It was helpful and kept me from taking out those negative feelings on my husband. What I have discovered since then is that my journal can be so much more than just a relief valve.

I keep all of the journals on my computer which gives me the ability to back and see if there are patterns. Is spring a particularly difficult time for us and why? On the Parkinson’s side, when did my husband take his first fall and how many since then? I can look at entries that have nothing to do with PD, review work we’ve done on the house and see who helped us with it. More recent entries are often about the weather or things happening in the world instead of being full of PD complaints. I am able to track ups and downs in my emotional health which helps me take better care of me. I can look back for times when things were going well on days when I need to remember that good times still exist. 

The longer I keep my journal, the more I value it and feel out of sorts when I don’t take the time to write. It has become my constant companion, a safe, non-judgmental space where I can say anything and everything. Cussing is allowed and grammar doesn’t matter because I am the only one who will ever see these words. If I were to give one piece of advice to my fellow CarePartners, it would be to take time every day to write down your feelings and your thoughts. You won’t know how helpful it is until you try it.

Everyone who is diagnosed with Parkinson’s has a different reaction to the disease. My husband, presents with predominantly physical symptoms, others may face more cognitive challenges. For some people, the disease progresses quickly, for others it may take years for symptoms to develop.  When you add the fact that many of our friends with PD are also battling additional illnesses it makes me wonder, do medications some people take for other ailments make a difference in their journey with Parkinson’s?

We once had a friend in our support group who was being treated for leukemia and swore that his PD symptoms improved based on medications he was taking for this other diagnosis. I am not a medical professional, but wonder whether boosting the immune system in someone’s body to fight one illness could also help with other problems? Did improvement in his leukemia symptoms make him think his Parkinson’s was progressing more slowly, or could the slowing have been an actual side-effect of his leukemia treatments? I don’t have any answers but also don’t see how treating one disease so aggressively couldn’t impact other things happening in the body.

My husband has not been diagnosed with any other chronic illnesses so he only has Parkinson’s to deal with. One of the women in our network says, “you should only have one”, meaning if someone is diagnosed with Parkinson’s that should be enough. Perhaps she is wrong and having multiple diagnoses could lead to better treatment? Maybe working with multiple medications for different problems will help researchers find a cure? We can only hope that something good comes from all of it as our loved ones continue to be guinea pigs in this grand experiment called Parkinson’s Disease.

I was reminded of this at a recent Parkinson’s Disease CarePartner gathering. A fellow Partner had injured her back trying to help her husband get up from a fall. She told us she finally had to go get the neighbor to help, but was that her best choice? I know how it happens. When my husband falls, my first instinct is to rush in and help him get up. I have been through training that tells me to do just the opposite, but my brain still wants to react in the moment. I forget that I can’t physically lift 200 pounds, nor should I assume someone else can safely do it.

The best response to a fall is to let my husband do his own self-check to determine whether he has done any damage and then he can let me know what needs to happen next. It is important that he has the opportunity to get himself up if possible. He will ask for my assistance if he wants it, perhaps he needs a chair moved closer to give him some leverage. My job is to be ready to call 911 if he can’t get himself off the floor. He needs a professional who can provide help without causing more damage and someone who can evaluate whether he needs additional treatment. My husband may not think it is necessary, but I have the right to override him when it comes to safety issues.

Getting back to my original statement, I can ask my neighbors to help me with yard work or moving furniture. I have asked for help doing minor home repairs. I can ask them to check in on my husband if I have to go out unexpectedly, but I shouldn’t be asking them for anything that involves physical contact. Think about it, what happens when they attempt to help with something and instead hurt themselves or my husband? That leaves me with even more of a disaster to deal with. I want the best care for my husband, especially in emergency situations, and that means trained EMTs. I may ask the neighbors to keep an eye out for the ambulance, but I’ll leave the actual care to those who have the appropriate training.

Which also means I may not realize how challenging my life has become as his CarePartner. When I am alone with my husband, taking care of his needs and doing whatever needs to be done seems natural. The changes in my role have come on slowly as his Parkinson’s symptoms progressed. The analogy that comes to mind is that I don’t always grasp how deep I am in the pool until the water is over my head. Suddenly I am struggling to survive, when did it get this crazy?

This is where I give credit to knowing others who have Parkinson’s Disease and the people who are caring for them. When I am around others in our PD support network, I have a chance to see things differently. I see the CarePartners struggling and hear them speak of challenges similar to those I am facing. I recognize myself in their stories and begin to understand that, perhaps, we are further along in this journey than I thought.

It was being around my fellow CarePartners that enabled me to ask for and receive in-home care. It is being with these kindred spirits that helps me set reasonable boundaries for myself. Watching them in action and talking with them as we all work so hard to help our loved ones gives me a better, clearer perspective. When I am at home with my husband, I can fool myself that his diagnosis hasn’t changed us that much. Being around our support network, on the other hand, keeps me accountable reminding me that things have and will continue to change and that it’s all okay. Truly understanding and accepting the progression of his illness, and the challenges it brings for both of us, allows me to be a better CarePartner for him and a better person for me.