Author: cptricia

Dealing with disappointments can be really challenging for the CarePartner and the Person with Parkinson’s Disease.

According to Google, disappointment is defined as “sadness or displeasure caused by the nonfulfillment of one’s hopes or expectations.” Unfortunately, it comes coupled with anger, frustration, loss, sadness, all feelings I know well as CarePartner for my husband with Parkinson’s Disease. I know he is also facing this to an even greater degree in his daily battles. Everyone will encounter disappointment at some point in their lives, it just seems like we get to do it so much more often these days.

I continued searching my friend Google for advice on how to deal with disappointment and found some helpful information on the Harvard Business Review website. Granted it didn’t have anything to do with being a CarePartner, but the coping skills they shared seemed universal. They say that if I take the time to understand why I am disappointed, then look at what may be possible, I can adjust my expectations to look for a realistic solution that works rather than dwell on what doesn’t. This matches my husband’s approach of focusing on what he can still do rather than what PD tries to tell him he can’t. I like it.

Daily Caring, an on-line resource for Caregivers, doesn’t directly address disappointment but they do have a great article on how to deal with “The 7 Deadly Emotions of Caregiving”. They talk about the importance of acknowledgement and suggest healthy outlets for my difficult emotions. They stress the value of connecting with others and understanding that my feelings are normal. It’s okay for me to be angry, frustrated, resentful, sad, but I must find healthy ways to cope. Disappointment is going to be a part of my journey, I simply need to make sure I don’t waste more thought on it than it deserves.

Find the article from the Harvard Business Review “Dealing with Disappointment, by Manfred F.R. Kets de Vries” here and “The 7 Deadly Emotions of Caregiving: How to Cope” here.

Staying safe in the summer can look different for your loved one who has Parkinson’s Disease.

I was reminded of this just this morning. I went outside to check on something and my husband followed me. Not realizing he was there, I turned quickly and almost knocked him down. We then got stuck in the doorway trying to maneuver backwards to a safer location. It is amazing how many new potential falling hazards are located just outside our backdoor. The warmer weather draws us both outside where the ground is not as even nor as familiar to either of us, and that is just at our home.

In addition to an increased risk of falls, the sun is more intense and the medications my husband takes for his Parkinson’s Disease make him more susceptible to burns. This disease interferes with his ability to regulate body temperature and he overheats very easily. His challenges with swallowing often mean he doesn’t drink enough water and, as things heat up, dehydration becomes a greater concern. I love the long days of summer, however, the prolonged light does seem to impact our sleep patterns. We close the blinds around 8 pm to give our brains the idea that it’s getting dark outside, I’m not sure that is going to work. And, our cat is very much dependent on the rising sun so she comes in to wake us around 5 these days.

We are finding ways to enjoy our summer without overdoing it. We have set up two separate areas on our patio, one in the sun and the other in the shade so we can enjoy being outside regardless of the time of day or weather. I minimized obstacles outdoors and strategically placed seating so my husband can easily access it. We try to take short walks in the evening, once the heat of the day has passed. Summer can still be fun as long we keep it hydrated, keep it cool, and always keep it safe.  

The concepts of “good” and “bad” days may change as your Person with Parkinson’s progresses in their journey.

It has been a tough week at our house and we are finally getting back to what feels like a more normal space. The reality, however, is that our current normal is very different from what it was just a year or two ago. It feels like each time we go through a tough time, we come back just a little bit further down the road. We adjust to the new routine and keep on going. It’s like we’re on a roller coaster and each time we come down from the highs, we go just a tiny bit lower. The changes are so small, I don’t even notice until I stop and look back at where we’ve been.

We were talking about this at a recent CarePartners breakfast. We all do what needs to be done to keep things going. We step in and help with personal care, with home care, with finances and medical care. When my husband got sick or had a fall, I was suddenly called upon to do even more. As he recovered, those extra duties often stayed with me. I adapted to the new normal and what had been a bad day became just another day.

It’s hard to remember the days before and perhaps that’s okay. If I don’t reflect on how it was, then I don’t feel the loss. It is easier for me to focus positively on what we still have as we move ahead. My role is changing, I feel I am spending more time these days as a caregiver than as a wife, but that may be how it has to be. One of the CarePartners at the table had a great perspective. She talked about “good” days and “not quite so good” days. I think I need to adopt her perspective as I accept and appreciate the new normal in our lives.

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.