We just got home from a few days at the beach. When we were first together we travelled often, this is the first time away from home in over a year. I thought this might be a good time to share some tips on what made our trip good and what could have been better.

If I asked for my husband’s input, his first response would be “keep it close and short”. He wasn’t excited about going, but I finally convinced him that it would be okay. I chose a resort at the coast, two hours away by car, that had studio rooms with ocean views. Valet parking helped us with arrival and departure and the on-site restaurant with all day room service meant less hassle for mealtimes. Having a kitchen was good for us since we both like to snack. And, while we were there I got him to admit that it wasn’t so bad after all. But he was ready to come home after just two nights, not the three I had reserved.

Accommodations look different to someone who doesn’t live with a disability. I called ahead of time and asked a lot of questions. I was specific about my husband’s challenges and the basics we needed. A room advertised as being ADA compliant usually means they have installed grab bars and a walk in shower. It doesn’t necessarily mean that the grab bars are in the right places. In this case they were situated between the shower and the toilet. They fit within the space allowed but it was not the most useful arrangement.

I tried to take any tools we might need to have a safe and successful trip. My husband depends on a walker at home so even though he might have preferred his cane, the walker came with us. I brought everything we needed for personal grooming. I know that he really missed having his transfer pole by the bed, but I am not sure the hotel would have let me install one anyway. The first day is always going to be spent resting and figuring out how to make things work. I keep in mind that outings in a strange environment may be beyond our capabilities. I didn’t have an agenda for this trip other than getting away and that really seemed to work best.

We had a lovely view of the ocean in a room that was comfortable and, for the most part, accommodating. I was able to take short walks on the beach while my husband stayed in the room with a good book. There was a patio on the ground floor that lead out to the beach. We spent some time there enjoying the sun and watching for whales. Life was a bit more complicated than being at home but we managed. Will we go again? Let me get back to you on that in about a year.

I HATE PARKINSON’S DISEASE AND ALL OF THE STUFF IT BRINGS WITH IT! I said stuff but know I was thinking of another “S” word I worried might insult some folks. You are welcome to use whatever word works best for you in your situation. Over the years I have posted lots of positive comments on the wall behind my computer. Things to make me feel better and keep me motivated in the moment. This one is a new one and it is going up as soon as I finish writing this blog.

It’s not an original thought, Connie Carpenter Phinney, CarePartner for her husband who has had PD for more than 20 years, opens her workshops by having everyone in the room yell “I hate Parkinson’s!”. When my husband and I belonged to a local gym that specialized in Rock Steady Boxing for PD, one session had us throw balls at a wall and call out the reasons we hate this disease. As a CarePartner I hear regularly, it’s okay to be mad at the disease just don’t take it out on your loved one. I just want to say that there’s a lot of hate that has built up over the years and it’s DOGGONE hard not to let it come out sometimes! Again you can replace the “D” word with one of your own, whatever works for you.

Getting upset, however, doesn’t do much good. In fact, it is harmful for me to let my emotions flair so I am trying to come up with alternative actions. Waiting until I explode isn’t the best plan, the moment things start to escalate is the best time to act. If I recognize what’s coming I can slow my breathing, refocus my brain and remind myself that whatever he is doing, it isn’t intentional. Taking a physical step away can separate me from the anger and allow me to find compassion instead. Then later, when I am in a better mental space, I write in my journal. My words rail against the disease that is ravaging my husband and destroying our lives. I say all those things I had to bite back in the moment because I know it’s a safe place for me to express my feelings. Sometimes I go back and read what I have written, more often just getting it down is enough. Then I am ready to put the smile back on and move back into the role of loving CarePartner. That’s who I want to be for my husband and what he deserves after all.

It’s a Sunday afternoon and I have been trying for hour to sit down at my computer and write a blog for tomorrow morning. First it was laundry that needed to be done. Second was a trip to the drug store for essentials I missed when shopping earlier this week. Third was the realization that I needed to clean and set up the BBQ if I planned to cook on it for the first time this year tonight. Fourth was when a hose under the sink came loose and flooded the cabinet while I was trying to clean said grill components. Of course all of these were being done while keeping an ear out for my husband should he need any assistance. It’s been a crazy day but the good news is that it gave me a topic to discuss.

How often do I get up in the morning with a plan that includes time for self-care only to see that plan go right out the window. Parkinson’s doesn’t care what I want to do, it only cares what havoc it can cause in my husband’s life and my day. If it isn’t the PD getting in the way it’s all the extra household chores that I have taken on because of it. It seems like no matter how hard I work nor how much I get done, there is always more. Being a CarePartner is a fulltime task when you add in all of the items I get to do because my husband can’t anymore. And I don’t even get to complain about it because it might make him feel bad!

What I finally realized is that unless I simply accept that life is crazy and find a way to let some things go I will never get time for me. I did finish two loads of laundry around making a quick trip to the drugstore. If I missed anything while shopping it will have to wait until next week. Right now I have the grill pieces soaking in a cleaning solution. I will go rinse them in a while and call it good enough. I dealt with the flooded cabinet but the wet towels are still in the laundry room, they are for tomorrow. I finally told my husband that I needed a few minutes to put together a blog and disappeared into my office. He knows that if he needs me he can call, but not to call unless there’s blood and there better be a lot. I am going to get this blog done and ready for posting.

I wrote these words so long ago that I can’t remember even what happened that caused me to write them, but they continue to prove themselves true. It happened again on Tuesday when our television cable box died during the evening news. Of course it was just at the time I was supposed to start cooking dinner, yet getting it fixed suddenly had to become my priority. Being the only one in the house who can do certain tasks doesn’t mean I want to do them or feel that I am capable of doing them. Often I surprise myself.

When disconnecting and reconnecting cables and turning everything off then on again didn’t work, I realized it was probably time for newer equipment. Thankfully the local cable store is open until 7 pm. I turned to  my husband and let him know that we were going to go ahead with dinner so we didn’t disrupt his schedule. Then I would run to the cable store and see if they would just replace the old box. Dinner dishes and kitchen clean up could wait until he had his TV connection back. It was nice to have a plan of action.

The young man at the cable store assured me that I could do the job. When I questioned my abilities, he simply asked, “Can you read? If you can read the instructions, you can do this.” As it turned out, he was right. It did take a couple of tries and a wrong connection before I found the right combination but we were up and running well before our programs came on that night. And my husband, who had been supervising turned to me and said “good job.” Beyond finding I really could manage this unexpected challenge, I think his gratitude was the best reward of all.

Please notice that I said better, not easier. At a certain point in this journey everyday life becomes more difficult. When you travel you are simply choosing to take those challenges with you. Our last trip was a couple of nights during the holiday season over a year ago. We went to a resort about an hour away. It was a quick reminder of why we don’t go very often. However, I am also remembering trips that we have enjoyed in the past. Perhaps it can be worth the extra effort, so I have booked a few days at the beach.

Since I know we can’t take every modification with us I am working on a list of essentials we must have. The resort has valet parking to make arrival and unloading easy. I requested a room with handicap accommodations, close to the elevators, and with an ocean view balcony. I called ahead to make sure the room is appropriately equipped for someone with mobility issues. There is a restaurant on site which does room service and our room has a small kitchen so means meals and snacks should be covered. We will be in a queen bed rather than our king, but I think we can make that work for a few nights.

My husband is anxious about going, it’s hard leaving all of our comfort at home. I am trying to help him understand that it will be okay. This trip has no agenda and will simply relocate our normal activities. If he wants to sit in the room and look out at the ocean all day while he reads, it’s okay with me. I have no expectation for long walks on the beach or shopping in the local gift shops, I simply want a peaceful getaway for both of us. I hope that is what we end up getting.

I have spoken in the past about the strength of the Serenity prayer and how I have used it on multiple occasions to get through tough situations. In case you are not familiar, a standard version of it used by many people goes something like this- “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” I love the message of peace and acceptance. In thinking about these words though, I have come up with my own version that is more appropriate to my situation as a Parkinson’s CarePartner and wanted to share it with you today.

My version addresses the fact that many of the frustrations in my life come from things my husband cannot change thanks to his diagnosis of PD. I need courage to accept those challenges he faces without nagging and understand that he is always doing his best. A little wisdom could help me figure out the things I need to change in my life to help him in his. I add a thought about directing my anger to the disease and not to the man I love. My final request for serenity is to find the peace and gratitude for the opportunity to share my life with him. Having said all of that, let me share my revised version of the Serenity Prayer for PD CarePartners that I send out to the universe as a whole.  

“Grant me wisdom today so that I can understand we have little control over the impact Parkinson’s Disease has on our lives, grant me courage to accept the things my husband cannot change, grant me the capacity to hate this disease and love my husband regardless, grant me serenity to find gratitude for the opportunity to spend my life with this amazing man.” Feel free to adapt this as needed and I hope it brings you some semblance of peace today.

During a recent support group meeting a CarePartner expressed their concern about not being able to continue providing care for their loved one. This is such a tough topic. We all want to think that we can offer the care our loved ones need and keep them at home where they are most comfortable. It is definitely a worthy goal and one that I share. The reality of Parkinson’s Disease and aging, however, may mean that we reach a day when I am not able to provide the best care for my husband. There may very well come a time when I have to admit that our home, even with in-home caregivers, is not the best placement for him. We both have to be open to that possibility.

One of the benefits of being in a support group is that I have friends who are at all stages of this journey. I have been able to watch as other couples had to deal with this difficult choice. I have seen some Partners keep their loved ones at home for the duration and, with a lot of support they were able to make that work. I have also seen other situations where the Person with Parkinson’s moved into a facility where their particular needs could be better met. The couples were still able to stay connected through regular visits and the CarePartner was able to take better care of themselves too.

Just as this journey is different for everyone and totally unpredictable, I need to be careful making promises to my husband about what our future will look like. My husband knows that my father had Parkinson’s Disease and spent the final months of his life in a facility because my mother was killing herself trying to care for him. Dad was lost in his dementia, but in those few moments of clarity he understood she had done her best. My husband understands and accepts that I will always do my best for him which may mean handing his care over to professionals in a facility someday. We accept that at some point the choice could become not what he wants, or what I want, but how we can find the best level of care for both of us.

It’s spring and that means lots of outside chores as I try to get the house, yard and patio ready for the new season. So far this week I have washed windows, hauled patio furniture, and power washed our patio, all tasks we would have taken on as a team in the past. My body is telling me that I may have overdone things a bit, I think today is going to be an easier day.

What I tend to forget is how physically taxing these jobs are and that they will take longer than they did when there were two of us working. Whether I was leading the task or acting as the helper, it always went so much faster and was more fun. Added to that is the complication that I occasionally need to take breaks to check and make sure my husband is okay. Taking breaks is good but it slows the process down and makes what may once have been a 1 hour job into a much longer task.

I miss the days when we would get up in the morning, work together all day, and have the house and yard ready by nightfall. We’d go out and grab some dinner and all was well in our world. Now, however, one day has turned into a full week of half days and I’m doing it on my own. Getting it all done always gives me a such a sense of accomplishment though, as does the knowledge that once I finish we can sit out back together and enjoy our lovely backyard and patio.

As his symptoms progress, it becomes more difficult for my husband to get out of the house. When he does go out, it is usually for things related to his treatment plan like exercise classes or support groups. I am so thankful for all the people we have met through his diagnosis because they truly understand and accept us for where we are in our journey. And, while those are excellent opportunities for socialization, it is also necessary for both of us to have connections that are not part of our Parkinson’s network. We need people in our lives who know us for more than this disease and who remember who we were back when.

Family is one option and so we try to get together with our kids and extended family on a pretty regular basis. We may meet at our house, their house, or go out to eat at a restaurant. It helps us remain connected through a shared awareness of our history and love. Our caregivers have proven to be another good connection. Even though they come to provide care due to my husband’s diagnosis, they bring a breath of fresh air into the house twice a week.

Even something as simple as going to the grocery store or the local coffee shop can be helpful. We used to visit wineries with a group of friends but it has become a rare occurrence. My husband uses social media to stay in contact with some family and friends, thank goodness he can still do that. My challenge is to keep him going, keep him interested, keep him reaching out, because Parkinson’s can make our world very small if we let it. And I don’t intend to let that happen.