Author: cptricia

Helping your loved one with decisions about treatments may mean also thinking about the impact any new regime could have on you in your role as CarePartner.

We visited my husband’s neurologist yesterday for his semi-annual check in. While we were there she mentioned a new process for the delivery of medication that should be approved within the next few months. It is a pump in a patch that delivers carbidopa levodopa subcutaneously. The goal is to even out the delivery of the medication into a 24 hour schedule and to make it less work for the patients as they would no longer be taking pills 5 or 6 times a day. My husband has his med schedule on his phone and it seems like alarms are always going off, it would be nice to not have to worry about that anymore. My question for her was, what is the trade off?

The process involves a patch which holds a small amount of the medication, a pump, and microscopic needles that actually are the delivery system. The patches must be changed and relocated every couple of days, and need to be monitored to ensure that they are not causing skin irritation. Some of the test subjects developed infections, or nodules at the injection site. Placement of the patches and watching out for complications would fall to me since my husband has limited ability when it comes to self-care.   

This absolutely sounds like a great break-through for delivery of his medication but is this something we could work with? Currently my husband manages his meds on his own, if we change to this new system it will require a united approach. We need to discuss the possibilities and the ramifications. Is he willing to share control of this component of his journey and how would that look? And, honestly, do I have the capacity and the capability needed to support him in this change? Finally, would it make our lives easier or more complicated? Questions we both need to answer before we meet with his neurologist again.

For more about the studies and the pump itself, check out this article “Continuous Subcutaneous Levodopa Delivery for Parkinson’s Disease: A Randomized Study” on the National institute of Health website.

Sleep deprivation is a common challenge for CarePartners.

I know I didn’t need to say it, but getting a full night’s sleep is one of the biggest challenges I face in caring for my husband. It takes me longer to go to sleep because I can’t let go of the worries of the day. My sleep is disturbed because I am still aware of any noises or movements he makes at night. We get up to take meds or use the bathroom and then my brain won’t let me go back to sleep. The reality is that I sleep less and the sleep I get is less restful which impacts my health overall.

What can I do? GREAT question and there are lots of answers available but do any of them really work? AARP shares 4 tips and their resources for caregivers that I can try. Their suggestions include creating a restful space for yourself to sleep which may be in another room, I don’t want to leave my marital bed to get a good night’s sleep. They suggest setting aside a time each day for worries, but then how do you keep them from creeping back in the middle of the night? I already have a bedtime ritual that is supposed to promote sleep and it works on occasion. Their final idea is to use relaxation techniques to help me transition into a more peaceful state of mind, something that has never helped.

It seems like I am being negative in this blog and that isn’t my intention, I’m just being realistic. One thing that has helped me is talking with fellow CarePartners and knowing I’m not alone in this challenge. Some of them have found success with melatonin supplements, others use cbd drops. I have spoken with my Primary care doctor because she needs to know that I am facing this challenge and has been working to help me eliminate any physical reasons that might be causing insomnia.

I have decided to look at those middle of the night awakenings as opportunities to get up and have some quiet time for myself. A piece of toast and some warm milk, a good book and my cat. I know I’ll pay for it tomorrow, but hopefully there’ll be time for a nap. If not, there’s always tomorrow night and maybe I’ll actually be able to sleep it through.

For more on sleep and caregivers, check out this NIH article “It’s Been a Hard Day’s Night”, Sleep Problems in Caregivers for Older Adults. The AARP article I reference can be found at Tips for Better Sleep While Caregiving.

While your loved one’s journey with Parkinson’s may be unique to them, you will find that you have much in common with fellow CarePartners. 

Which is a reminder that, when I am seeking support for myself, there is value in looking beyond the Parkinson’s world for help. This isn’t to say that the many organizations created to help my husband in his journey don’t also have information for me, it is simply that their focus is on him first. If I am looking for someone who understand my challenges, I need someone who is facing them with me. I deserve to be supported in my role and my journey, not simply because I am his caregiver but because I am trying to live my life fully too.

In a group of CarePartners, it does not matter whether my loved one has PD or MS or ALS, it simply matters that I am caring for someone with a chronic and progressive illness. I can share with my peers as we experience similar feelings of loss, frustration, anger and guilt. We can connect over the challenges we face and the difficult situations we find ourselves in. We can learn from each other as we talk about our lives and find better ways to make it through each day.

There are too many websites dedicated to people who provide care for others for me to mention any here. I just googled CarePartner and found 100s of entries and even an on-line radio station that plays music and inspirational podcasts. I have to be careful because the search itself could easily be overwhelming. I simply need to remember that there is help available when I need it because I can always find something that is uplifting, encouraging and written just for me.

People do not knowingly bring Parkinson’s Disease on themselves and shouldn’t feel blame, or be blamed, for the challenges it brings.

My husband and I were talking the other day when he mentioned that maybe I should write about how people get Parkinson’s in the first place. I asked him to clarify and he said that sometimes people with PD feel that they have the disease based on choices they made in life. It’s not that they think they’re being punished, but that career or perhaps lifestyle choices may have given them this illness. While there may be some truth to that concept, no one in their right mind would ever choose this pathway in life. It’s just unthinkable.

There isn’t a test that can tell us when my husband first “caught” PD. Was it exposure to pesticides when he was working in the orchards as a young man? Or, was it an injury he sustained while in the National Guard that led to this diagnosis? Was it something he did, something that was done to him, something he accidentally experienced along the way? My point is, he didn’t ask for this diagnosis and would never have made an intentional choice with a known risk of Parkinson’s Disease.

I get angry at times when I see how his diagnosis has impacted us and the changes it continues to bring to our lives. We both say freely that this isn’t how we pictured our retirement years, yet I never blame my husband for what we are missing out on and, more importantly, he shouldn’t blame himself. He did not choose PD, it chose him. I chose him too, and if that means we live with PD then so be it. All blame for the difficulties we face falls on the disease itself, not on my wonderful husband who lives with it.

One of the biggest challenges about Parkinson’s Disease is the uncertainty of where it will go and what might happen next. That may also be a blessing in disguise.

As research continues and tests are being developed that can detect Parkinsonism, my question becomes when will it be possible to define the actual type of PD someone has? Will this new research allow medical teams to tell us whether our loved ones will be facing more physical or mental challenges as their disease progresses? Will we finally have a roadmap for the journey we are on? More importantly, would I want one?

One of the things I often complain about with this diagnosis is the lack of clarity for our future. We are told that the disease is progressive and that there are many possible outcomes, but no one can actually predict what will come next for us. Now, it appears that the body of research is finding similarities in the physical makeup of people who develop the different variants of Parkinson’s. Further research should lead to a better understanding of the disease, new and better treatments and even a cure. As they distinguish between characteristics of patients showing different symptoms, it seems that neurologists may one day be able to give a clearer prognosis to individuals when the disease is first detected.

My husband was diagnosed 14 years ago and we were given lots of frightening information about possible outcomes. It might have been helpful for us to know that he would face mostly physical challenges rather than cognitive, but I’m not sure that it would have changed anything. I don’t think I want to know if cognitive challenges beyond normal aging or hallucinations are in his future unless it comes with a proven plan for treating those symptoms. I guess what I’m saying is that not knowing is tough, but knowing might be tougher. Perhaps there’s truth in the old saying “what you don’t know can’t hurt you.” I think, for now, I like not knowing every turn in the road ahead as we continue our journey with Mr. Parkinson’s Disease.

Be mindful of the verbiage you use when thinking about your role as a CarePartner. The internal conversation you have can be powerful.

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.

CarePartners die at a younger age than their peers who are not caring for a loved one.

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.

Comparing your life to the lives of others is not useful unless you also factor in your current situation and allow for unknown challenges they may be facing.

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.

There are benefits to living with someone who has a chronic illness like Parkinson’s Disease.

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.  

Three things my mother never taught me that I have learned in my role as a CarePartner.

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?