health

Being a CarePartner will be an educational journey as you learn more about the disease inflicting your loved one, develop new personal skills, and discover just how strong you truly are.

I am so tired of learning new things about Parkinson’s Disease, especially since the one thing I want to know, how to make it go away, isn’t available to me. I don’t want to learn more about fixing things around the house or taking care of my yard. I really feel like I’ve been pushed to my limits, I don’t want to have to be any stronger or more capable. I just want it all to stop and to have my husband back. That’s my whining done for the day, time to flip my perspective.

It’s time for me to figure out how to appreciate my new capabilities. There is some pride in fixing little things around the house myself and figuring ways to get bigger things done too. I find pleasure in the blueberries I am growing in our backyard. I may not enjoy all of my new skills, but they keep us going on a daily basis and there is personal satisfaction in that. Watching the man I married standing strong in spite of his diagnosis, reminds me that I must continue to be strong and capable for him.

I miss the life we had and the future we could have had. I regret conversations never shared, trips planned but never taken, all the opportunities Parkinson’s took away from us. Focusing on the losses gets me nowhere, I need to look for the gains. I feel that I have a solid knowledge base about this disease and about being a caregiver. I have become pretty competent at taking care of minor disasters around our home and property. I am more patient and compassionate than I ever thought I could be before he was diagnosed. Finally, I can be strong enough to continue this journey with him wherever it goes.

You don’t always have to be the strong one.

There are times, like today, when all I want is for someone to give me a great big hug and tell me that it’s all going to be okay. It’s weird because today hasn’t been a difficult day, no falls or major incidents, yet I just feel the need to let go and let someone else take over for a minute. I really think that having just that minute would be enough for me to release the pressure that builds up. Then I could get on with my day.   

I could turn to my husband, but then I feel guilty because he thinks my stress is all his fault. It’s not. Let me say that again, I know it’s not. I don’t blame him for this disease and the challenges it has brought, nor for the additional responsibilities I have taken on around our house. I see his struggles and the strength he needs to keep going on a daily basis. I certainly don’t want to be a drain for him. Unfortunately, unless I go knock on the neighbor’s door, there’s no one else around and I’m pretty sure they wouldn’t understand.

So, I find a quiet time when I can come to my room, take off my superwoman cape, and let go of all the expectations and duties. I take that minute I need to practice self-calming techniques. I close my eyes and breathe deeply, I massage my face and hands, especially those acupressure points between my eyebrows and between my thumb and forefinger. I wrap my arms around myself and say the words, “you’re okay today” because I know it’s true. I am strong enough to face whatever life as a CarePartner decides to throw at me, I just don’t have to be all the time.

For more information on acupressure points visit the Healthline webpage Pressure Points for Anxiety; additional information on breathing techniques can be found at Relieving Stress in the Moment by Livongo-zen.com.

Attend medical appointments with your loved one and share your perspective so the doctor can get the whole picture.

This afternoon my husband gets to see his neurologist/movement disorder specialist. We visit in-person once a year and do a virtual visit once a year. In the beginning I went along because I wanted to learn as much as possible about his diagnosis. I quickly figured out that it is valuable for me to be there because my husband may minimize his challenges. In fact, I attend all my husband’s medical appointments including his vision and PT. I know his dental team and, while I don’t go in the room with him for those appointments, I do keep in touch with them. His entire medical team needs an honest assessment of his progress on this journey. If they don’t know about everything that is going on, they can’t recommend the best treatment plans for whatever their specialty is.

Preparing for these visits varies based on who he is seeing. Most of the time we will have a conversation about what we want to emphasize on our way to whichever doctor’s office. I jot significant things like falls on my calendar and we pull that out to review things that happened since we last saw them. When meeting with his neurologist, we often make lists so we don’t miss anything. I write a list and compare it to his so there are no surprises or difficult conversations in the doctor’s office.

The important thing to remember is that the doctors can only work with what they know. I schedule appointments at a time between meds when he is feeling strong and doesn’t get exhausted. They need to know that this may not be his typical presentation. There probably are times when my husband wishes I wasn’t there because of things I share, but it has to be done. And, if there is something I don’t have time or feel comfortable saying with him in the room, I reach out to his doctor before or after the appointment. The medical team appreciates having my perspective, my husband appreciates having a second set of ears in the room to hear instructions, and I appreciate being kept in the loop on his current treatment plans. It’s a winning process for everyone.

Make sure that paid helpers in your life, and especially the agency they work for, understand their value.

Monday was International Nurse’s Day, a good time to recognize the Certified Nursing Assistants who provide care for my husband. I was able to give thanks to our Monday helper but, unfortunately, our Wednesday caregiver called in sick. The agency didn’t have a replacement and their scheduler apologized for the inconvenience. While I truly do appreciate the help, her apology didn’t set well with me because I am not sure she understands what not having them here means to me. It goes so much beyond an inconvenience, they have become my lifeline.

Without a caregiver I missed my yoga class, a key component of my self-care program. I go with a friend so it’s also a social experience for me. I missed my weekly trip to the grocery store and had to rethink my menu plan to make sure we were covered. I will have to fit shopping in another day while my husband is at an exercise class and it will be rushed which adds stress to my life instead of taking it away. All of the household tasks our Wednesday helper normally does for me will either have to wait a week or I will have to do them myself, again adding stress. Most importantly, that midweek break that I have come to depend on is gone.

I have tried to express the importance of these activities to everyone working at the agency and will again let them know how disappointed I am at losing their services this week. I know they are struggling to find good Caregivers and understand that they cannot control when folks need a day off. I just want to make sure they understand that it is so much more than just an inconvenience. Perhaps then they will try a little harder to have the support available when we need it.

Attending medical appointments with your loved one may lead to unexpected benefits for you.

I know that I have written about the importance of accompanying your Person with Parkinson’s to all of their appointments so you can be ready to support them in their journey, but I don’t think I have mentioned that it can actually lead to a better life for you. This happened recently for us when  I stumbled across a new treatment for things that had been troubling me for ages. Bowel issues are a constant in Parkinson’s and constipation is something I struggle with too, thanks to a faulty thyroid gland. I also learned recently that I inherited high cholesterol from my mother. At a recent visit with a member of my husband’s medical team, he was told to try Psyllium Fiber for his digestion. In my search for the best Psyllium options I found that not only is it good for him it is also good for what ails me. It has been proven to help with chronic constipation and lowers high cholesterol. So, we’re both using it daily with pretty good results so far.

In the past I have mentioned that my husband’s diagnosis encourages me to plan and cook healthier meals and to exercise more. We work to incorporate these into our daily life and it definitely makes a difference. A visit to get blood work done earlier this week also reminded both of us of the importance of hydration. The phlebotomist was having a difficult time drawing his blood and mentioned that it was really thick. We both ramped up our water consumption that same day.

It’s so easy to get caught up in the negative aspects of this disease but in the long run, which PD is turning out to be, we are both more health conscious than ever before. I know that I am aging better thanks to suggestions for him from his medical team. One thing I hope his doctors understand is that his care is dependent on my health. Whenever they can share something that is good for both of us it’s a real bonus. I need to remember to mention this and thank each of them for the support they give me at his next appointment. Perhaps they’ll do it more?

Most CarePartners are well aware of Bradykinesia, the physical slowness that accompanies a Parkinson’s diagnosis. It is important to understand the effects of Bradyphrenia, slowness in brain processes, too.

Those Brady twins, as I have come to think of them, are the bane of this Parkinson’s CarePartner’s existence. They work hand in hand to slow down everything my husband tries to do. It is no wonder that he feels exhausted when he is having to consciously work with his brain and body to do activities that were once automatic. He pushes back on the physical challenges by exercising. Staying active has helped him slow the progression of symptoms and gives him some semblance of control of his body. We can only hope that this activity also helps speed up the processing centers of his brain, but it’s much more difficult to gauge.

One of the questions his neurologist asks is whether he can do complicated or multi-step tasks and the answer is no. He used to be able to handle multiple challenges easily, but now has to have directions broken down into smaller steps. It isn’t that he doesn’t have the capability, it’s that his brain must work through each step and send instructions to his body before moving on. It becomes a difficult and tedious problem for both of us as I try to help him and often just make things worse.

I am learning to practice patience and step away so he can complete things in his own way and his own time. I am learning to ask single questions and wait for his response before adding to the conversation. I am learning to let him know when we need to hurry and ask if I can help or take over a particular task to get it done. I am trying to be respectful of the man who is trapped in a body that becomes more difficult for him to manage every day thanks to Mr. Parkinson and those darn Brady twins.

Parkinson’s and Pro-biotics can be a useful combination when trying to manage gut issues.

My husband recently had a bout of intestinal upset accompanied by about 2 weeks of intense diarrhea. We worked to keep him hydrated and, since he never exhibited a fever, he didn’t visit urgent care until it was too late for them to be able to detect what was causing the problem. As things started to settle, his caregiver mentioned that probiotics might be helpful in getting his gut back to a normal state. Knowing that my husband is not good at eating lots of green vegetables nor does he like yogurts or pickled foods that might contain live cultures, I decided to try a probiotic pill. We spoke with his neurologist about this and she agreed that it couldn’t hurt.

Let me back up a bit to say that before this episode my husband used Miralax regularly to keep things moving. He went off it when the diarrhea hit and hadn’t started it again. The probiotic we chose was a generic version from the local drug store. He took one a day with his breakfast. We saw a change in his movements within about a week, the consistency was easier to control and he was more regular. We decided to try adding the Miralax back into the mix, but it seemed to make things worse so are now stopping the laxative to see what the probiotics can do on their own. 

Studies have been done on the gut microbiome and how it influences Parkinson’s Disease. I really didn’t look into that topic choosing to focus instead on the impact to his bowels and issues with constipation. So far things are looking good, if he also gets better absorption of his carbidopa levodopa, then that will make it even better. Anything that makes our daily lives even a little bit better is a win in my book.

My information for this blog came from observing my husband’s experience and the following two websites: https://www.apdaparkinson.org/article/probiotics-and-parkinsons-disease/ and https://www.nccih.nih.gov/health/probiotics-usefulness-and-safety. I am not advocating for the anyone to use Probiotics but do encourage everyone to research this topic.

Even when not actively engaged in care for your loved one, you may find that they are always present in your thoughts.

I think about the Willie Nelson song, “Always on my mind”. My husband is always on my mind, that is to say I am always on alert, listening to make sure all is going well for him. It’s not necessarily a bad thing, but it is also not always a necessary thing. Nor is it a healthy thing for me.

When I am constantly on alert, the stress causes my cortisol levels to rise. Many studies have been done with family caregivers of people with dementia, but I am here to say that the same feelings exist in any person caring for a loved one with a chronic illness. It’s like I am always in a fight or flight mode, waiting for the next disaster to happen. I love those times when my husband takes a nap or sits down to read for a while because I can let go and take a break. I’m able to step into standby mode for a little while which gives my cortisol levels a chance to normalize. And yet I will catch myself looking over to make sure he’s still breathing, how crazy is that?

As a CarePartner, I know I must stay healthy in order to provide the care he needs, but how can I do that when just being here for him may be a threat to my wellbeing? There are techniques for alleviating stress, I know them and need to use them. There are opportunities for me to get away, I must take advantage of them. Finally, I can maintain an awareness of my own feelings and do my best to keep my husband always on my heart, just maybe not always on my mind.

For more information on what cortisol is and how it functions in our bodies check out this article I found on the Cleveland Clinic website entitled simply Cortisol.

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.

Exercise your body, exercise your mind and exercise your soul every day to keep your entire self flexible and prepared for whatever life brings.

I put my body first because a healthy and relatively pain-free body is essential when living with someone who has a chronic illness. I know how important working out is for my husband, I don’t always remember that it is just as important for me. Exercising, getting the blood flowing throughout my body, is also key to keeping my brain healthy so it can manage everything else. Having a healthy body and brain gives me the energy, and capacity, to provide the support he needs while continuing to pursue my personal interests and self-care.

In addition to physical activity every day, I like to find ways to stretch my mind. I read the local newspaper daily and try to stay informed about current events. I find time for computer games on my tablet, solitaire and sudoku or matching games that give different challenges. I follow several Parkinson’s research websites looking for answers to challenges we face. The older I get, the more often I find myself standing in a room wondering why I am there. Any activities that might help me maintain the brain I have left has to be good, right?

Finally, I take time every day to exercise (or really pamper) my soul. I can only spend so much of my time in the CarePartner role before I find myself getting frustrated and tired. My way of fighting that is to find a space in my day to reconnect to myself. My husband takes naps daily which gives me a chance to focus on my own needs. This is my time to write or play games. My favorite activity is writing because it gives me the opportunity to vent negative feelings in a safe way rather than put them out into the world around us. I journal what’s happening in my day, but once that is done I work on creative short stories and poems. The creative writing allows me to escape into a different reality for a while. That hour or so gives me a break midday to rest, reflect and refresh my soul. He needs the sleep and I need the quiet. It really works well for both of us.