I have been thinking lately about how I cope when things go wrong and find the most common mechanism I use is to spin it. I look at what happened and turn it into a positive, no matter how small that positive appears. When my husband took a fall earlier this year, my spin was at least he didn’t break anything. If I can find a positive note and maybe even a smile (however fake and ironic) before continuing my day, it helps me stay focused on his care.

My spin philosophy extends to the extra household duties I have picked up thanks to his diagnosis as well. When things go wrong around the house, I simply remind myself that at least I have a roof over my head. Or, I can remember a couple of past disasters and remind myself that no trees have fallen on us. There’s always the old reliable, I don’t have to do it myself, I can call a repairman when things happen that are beyond my skill level. That works really well to improve my mood.

Putting a positive spin on things doesn’t mean letting go of the realities of my situation, it simply means finding a way to cope with challenges I face so they don’t impede my ability to function. I think of it as laughing in the face of my husband’s Parkinson’s diagnosis and am encouraged to keep going. Life as a CarePartner is always going to bring difficulties, hopefully I will find a way to face them all with a smile.

The holidays can be a busy time of the year for all of us, however, just because I have more on my to-do list doesn’t mean I have any less on my to-do for my husband list. And, his stuff is usually non-negotiable, it must be done regardless. In trying to keep up with everything, I have developed a couple of questions I can ask that help prioritize my day. Those questions are “must this be done now?”, “is there an easier way to get it done?”, and “am I the right person to do this?”   

Sometimes it just comes down to timing. My husband got up one morning and decided it was the day to put up our Christmas tree. This is an activity we once shared, now he holds the door while I bring in boxes from the garage, watches while I put the tree together and then lets me decorate it. I delayed for a couple of hours to get our basic tasks completed before getting started. The result was that I got the tree up, then took a break for several hours before tackling the ornaments. I realize it did need to be done, but I was able to work on it over a period of time to make it easier. I knew that no one else was going to come and do it for me.

There are times when I have to tell my husband “no, I just can’t take care of that.” He understands and would prefer I let him know how I feel rather than go ahead and try to do something I shouldn’t. We had an example of that recently when the garage door started to beep during breakfast. I told him that I would check on it after we finished our morning routine. Once I got to it, I was able to troubleshoot the problem but didn’t feel safe taking on the repair. We called a technician who arrived within a few hours and the beeping went away.

I know my capabilities and my capacity and recognize that those things can vary based on how our day is going. If I remember that it’s okay to delay, simplify and delegate, then things that absolutely must be done will always get done, and I won’t become overwhelmed and grumpy in the process.

I am finding that the biggest difference in the two roles, besides my age, involves the trajectory of care. When I was raising my son, I looked forward to a time when he wouldn’t need my help anymore. As a CarePartner for someone with Parkinson’s Disease, the opposite is true. My husband’s condition will progress, and my workload will increase. We recently reached a point where I couldn’t keep up and I needed to bring in additional support. While he will have good days, we will never reach the point where we need less support.

With my toddler, I learned to use less words, with my husband I use more as I try to communicate effectively. In both roles my job is to make our environment safer, child proofing with my son and fall prevention with my husband. I live constantly on alert wondering where he is, what he is doing, if he is safe. When caring for a young child I worried when it got too quiet; now I worry about noises that I don’t recognize and rush to make sure all is okay. It often isn’t.

Being a CarePartner is a difficult task that I willingly accept because I know my husband would do the same for me. I understand that this journey will be arduous, and the final outcome will bring great pain. I learn more about this disease and the body as we move forward but even more important, I am learning about myself. I am finding my courage, my compassion and yes at times, the limits to my capabilities. I used to think being a parent was the most difficult task I had ever faced, being a CarePartner tops it. My husband is still the man I fell in love with all those years ago, I can’t let this diagnosis take that away from us. The challenges may be great, but the rewards will always outweigh them.                                                                                                       

The topic of happiness came up in a recent Davis Phinney CarePartner meetup. Connie Carpenter Phinney, Davis’s wife and CarePartner, mentioned a book she had recently read by Oprah Winfrey and Arthur Brooks on finding happiness in your life. After the meeting was over, I googled the book and learned that the name of it is “Build the Life You Want” with the subtitle, “The Art and Science of Getting Happier.” Is there really a scientific method for finding happiness no matter what life throws at me? Is it worth exploring?

Happiness is not something I spend much time thinking about. I have moments during my day when I catch myself smiling about something, but they come and go so quickly. What makes me happy? It may be the birds in the trees when I go out for a walk, it may be the squirrels playing in our backyard, it may be my cat sleeping in the sun. It always happens when I wake in the morning and feel my husband next to me, that knowledge that we have another day to share together regardless of the struggles. Happiness hits, then passes as I move through the constant construct of my day. The things I have to do that bring neither joy or sadness, they simply bring satisfaction and contentment.

Could a book help me find more happiness to share with my husband as we face this disease together? I don’t know, but I think I am going to give it a try. I don’t read self-help books, choosing instead to read mysteries that help me escape my life, not things encouraging me to improve it. I think it might be a good time to give it a try. It might work and at the very least I’ll get a different perspective on living a happier life.

I sat in on a webinar with my husband that addressed the need for a Speech Pathologist to work with people who have Parkinson’s Disease. The presentation was about both speech and swallow challenges and was going really well until they hit us with some cold hard facts, statistics that I had not encountered before. The presenter, Doreen Nicholas who is a professor at Eastern Washington University, said that 90% of people with Parkinson’s will develop speech disorders. She then went on to say that 70% of all deaths related to Parkinson’s can be attributed to aspiration pneumonia. This is the complication that took my father from us 30 years ago.

She works with a program called the Parkinson’s Voice Project. Eastern Washington University is one of 15 grant funded sites that provide speech therapy free as part of a national study. The program she uses is called Speak Out and is based on speaking with intention. She shared a few details about how the sessions are designed, but the bottom line was that they help if someone is willing to do the work. Following a 4 to 5 week program with a therapist, my husband would need to do daily practice if he wants to maintain his new skills.

My husband and I were both surprised by these statistics. He is constantly being reminded to exercise his body, we just didn’t realize that his throat and mouth needed to be included in the workout. He is now on a waiting list for the next session with Professor Nicholas. In the meantime, he has committed to doing what he can on his own to strengthen his voice and throat muscles.  

If you want to check this out for your loved one, visit parkinsonvoiceproject.org. They describe the program and can help you find a provider in your area. You can even try out their daily on-line lessons to see if it is a good fit.

I am not comparing my husband to a child, but sometimes it seems like the best options for providing care are things I learned while parenting. Let me share an example. My son was not a napper, and he was very active. I was exhausted every day until I figured out that if I spent an hour or so of intense one on one playtime, he would wear himself out and then I could get him to sleep so I could get a much-needed midday break. It can also work with my husband.

He doesn’t have a huge problem napping, but I have those days when I need a little bit more time for myself. Mental or physical challenges are very tiring for my husband. I know that if I need for him to rest, we can go for a walk, work on a menu plan for the coming week or simply work out together. The activity is good for both of us, and I am usually able to get at least a 20-to-30-minute break.

My husband and I used to talk about how skills we acquired while raising our children were transferrable to working with adults. We laughed at times when we realized we were even using them on each other. Now they have become essential in my role of CarePartner, especially those around finding patience. I don’t want to imply that my husband is childish, far from it. Things just work better when I use clear and concise directions, have interactions that are not overly complicated, hold realistic expectations and remember loving interventions for when things go sideways, because they often do. Most important of all is acknowledging that he is not my child, he is my partner in life. Everything I do must begin with that awareness so I can make sure I am considerate to, and respectful of, the man sometimes hidden behind the disease.

Here we are in the midst of cold and flu season, and I am looking at the collection of remedies in my medicine cabinet realizing that I need to throw many of them out. We have been lucky and have not had any bouts with the flu or even colds over the past few years so much of the medication has expired; reason #1 to throw it out. We are getting older, and the newest recommendations say seniors shouldn’t take OTC cold and flu meds that contain Benedryl because they can increase our risk of dementia; reason #2 to throw them out. Most cold and flu meds list drowsiness and confusion as possible side effects, something my husband faces anyway with his diagnosis of PD; reason #3 to throw them out.

So, what to do instead? Even though we get our flu shots every year, there is still the chance we will contract something. Do we then have to suffer through colds or flu with no relief at all? According to a blog posting on the Parkinson’s Foundation website, there may be times when it is okay to use OTC meds and supplements. If my husband is extremely sick, we should consult with his neurologist and pharmacist. They can help us figure out whether a particular OTC medication or supplement will interact with his PD meds and discuss possible side effects. We can work together to decide whether continuing to suffer with the cold or flu is the lesser of the two evils.

Should we all decide that it might be best not take OTC meds, our next approach is the tried and true. Lots of fluids and rest. Chicken soup, tea with honey, saline rinses for the nose and who doesn’t remember having menthol rubs on your chest to help relieve congestion? Most of the resources I found agreed that my husband and I would be safe taking either ibuprofen or acetaminophen for the achiness, but we need to remember that fever is how our bodies kill the invading illness. I certainly don’t want to do anything that might interfere with natural defenses to make the cold or flu stick around longer for either of us.

To learn more about topics in today’s blog- Benadryl Side Effects: What They Are and How to Manage Them (healthline.com); Tips for People with Parkinson’s Who Want to Take Over the Counter Medications During Flu Season | Parkinson’s Foundation; 14 All-Natural Home Remedies for Fast Cold & Flu Relief (webmd.com).

I have been visiting with a therapist for over a year now. At first, we were meeting every other week and then once a month. I found my visits with her to be very helpful as I worked my way through some difficult decisions regarding my husband’s care and my personal self-care. Thanks to her support, I am enrolled in a yoga class once a week and have started in-home care. I am exploring other opportunities for self-enrichment and stress relief. Life is better and I feel ready to let the monthly check-ins go.

It concerns me that I might fall back into bad habits once I am not meeting with her regularly. Will I be able to hold myself accountable to the same extent that she does? She has helped me find a positive pathway, will I stay on it without her guidance? What happens when the next challenge comes up and I need that objective ear to help  me figure out what to do? It has been nice having someone who is not connected to Parkinson’s to share my struggles with.

So, I am at a crossroads. One part of my mind wants to continue the monthly meetings just in case, the other is ready to say I can do this on my own. I do have an appointment coming up next week, I think I know what we’ll be talking about and perhaps she can help me find the right answer. I hope so. Whichever way I go, I am going to tape her business card to my mirror so I can remind myself that professional help is just a phone call away.  

I’ve been working on figuring out how to make dinner time less stressful for us. There are spills on the table and on the floor that can be troubling for both of us. I joke about getting a dog to help with clean up, but in reality, I need to find tools that allow my husband to feed himself safely without making a mess. I have a hard time bringing this up, not wanting to embarrass him, and it often turns into a joke. My biggest concern is that he will spill something, I won’t realize what has happened, and he will slip in it getting out of his chair. We don’t need any additional fall risks in our lives.

Amazon has been my friend as I look for something that might help. I searched for adaptable dinnerware and found that they have so many things, it is almost too much to sort through. There are scooper plates and bowls, plates designed with high walls with and without sections, plate safety rims that clip on to our existing dinnerware. The utensils range from bendable to weighted to rocker knives to sporks and knorks (a knife-fork combination). I have been considering this for months now, I finally decided it is time to order some things and give them a try.

I decided to purchase a couple of different styles of plates, a scooper and a high wall version. We can see if either of them work for him. I also ordered a small set of utensils. I am hopeful that he will be willing to try them and that they solve some of this problem. Otherwise we’ll be trying to convince the cat to clean up spills like the dog. Pretty sure I know how that would go…

I am so thankful for the times my husband and I were able to go places, the vacations big and small that we took both before and in the early years of his diagnosis. I am thankful for all the things we did together, the adventures we had. I am especially thankful that we said yes more often than we said no, because Parkinson’s Disease has brought changes to our lives, and we would have missed out on so much.

Instead of feeling regret over missed opportunities, I am able to look back on warm memories. Whether it was trips to Hawaii and Moorea, or to a local B-n-B for a quick weekend away, I can revisit them in my mind whenever I need a break from the day to day. I recall swimming with sting rays, dancing to a live band at a local winery, soaking in a hot tub as snow fell around us. These thoughts always bring a smile to what may otherwise be a very difficult day.

My advice to anyone caring for someone who is newly diagnosed is this, live your lives as fully as you can everyday. Go now, do things while you both can, don’t put anything off. Take advantage of every opportunity for travel or for fun, they may not come again. And know that someday, perhaps sooner than you expect, this disease may take those options away. Experience life fully and store up those memories while you can, they will bring comfort when you can’t go and do anymore.