I am especially surprised by some of the things I hear coming out of my husband’s mouth. I live with him and have developed my own opinions and perspectives about what is happening; a perspective that I believe is pretty accurate. However, I am still caught unaware sometimes when my husband is talking with his doctors. I found out during his recent Physical Therapy appointment that he is having leg cramps everyday, when did those start? Better still, why hasn’t he mentioned them to me before?

I go to his appointments with the expectation that I might learn something new from the professionals, not from him. We always talk about anything either of us think is important before his appointments to be sure priorities get covered. Then he catches me off-guard by telling the doctor about something totally out of the blue. Maybe that’s why he does it, to see the surprised look on my face? At any rate, it makes me feel like I am not doing my job of CarePartner well enough or I would have known about whatever it is.

Since that PT appointment, I am massaging his right leg before bed to see if we can alleviate some of the cramping. He says that it seems to be helping. His choice to talk with the professional about his aches and pains does not reflect on me, I can only work with what I know and what he decides to share. That is why it is so vital that I am present at all of his appointments. And that I practice my best listening skills so I can really know what is going on beyond what he tells me.

When my husband was struggling with getting in and out of our car, which was a sedan, we traded it for an SUV. When my husband was having a tough time getting off the old couch, we bought a newer one that sets up higher. When we needed a new bed, we bought firm mattresses that would make it easier for him to roll over and sit up. When he chokes on his food, I cut things up smaller. When he falls, I rearrange the furniture to make our home less dangerous. I am doing everything I can to make his journey with PD less challenging, but does it really help?

I sometimes wonder if I am just making work for myself. I can’t predict what is going to happen next with my husband and yet I spend my days trying to cushion his world for him. Some of the things I have done for him have helped, some not so much. Some even make my life harder, that new couch we bought is really uncomfortable. At what point do I need to say I’ve done all that I can? His disease is going to progress and there is no way I can possibly stay ahead of it.

Just as I have had to accept that my husband has this debilitating illness, I need to accept that I can’t be the remedy. I can work myself into a frazzle trying but, until there is a medical breakthrough, PD is ultimately going to win the battle. Does that mean I give up trying? No way, it just means I use some common sense in my efforts to help. Before making those big changes, I need to step back and look at the impact it will have on both of us. I need to talk with my husband to make sure that what I am doing makes sense for him and isn’t just something I think he needs. Finally, I need to accept that I can’t be his protector because life just doesn’t work that way. I can be his partner and his lover and that will have to be where I call enough.

My husband has been having a great couple of weeks. We adjusted his DBS settings which seems to have helped. His balance is better, and he seems to have more energy. He might disagree but this is my perspective. I especially noticed this when he wanted to help with the yard work a few days ago and then yesterday when we were getting ready for a family dinner. He was setting up chairs and helping tidy up the house. It felt almost like old times again.

I know that this can change at any time. He has his good days, we seem to be having a run of them, but then a bad day can hit without warning. I tend to be overprotective and yet, these past few days I have been stepping back more and letting him be. I am still watchful, just not staying as close and hoping that he will let me know should he need my assistance. It’s difficult for him to ask for help so when he does I know he means it. I need to stay ready.

Knowing when to step in from when to step back is challenging. My husband can get completely dressed one day and need help the next. He can get out of bed one morning and need help the next. He is full of energy (or as full as someone with PD can be) one day and napping the next. My task, as his CarePartner is to be here for him. I always try to give him the lead and let him tell me, either through his words or actions, the level of care he needs. It is his battle with Parkinson’s and he deserves the opportunity to fight it on his own terms and to the best of his capabilities, whatever that looks like on any given day.

I don’t live in my husband’s body. I don’t know what aches and pains he has today versus yesterday. I know that he has good and bad days, I don’t always know which we are dealing with today. I don’t know when he is trying his hardest because his abilities vary from day to day. I don’t know if his meds are on or off, I don’t know which of the multiple tasks he is trying to do at a given time are the most difficult for him. I do know that he gets tired of hearing me constantly pushing him to do more.

I like to think that my “gentle reminders” are encouraging. Stand up straight dear, stretch up higher dear, bigger steps with purpose dear. But are they really? At what point does it tip over into just noise that he tunes out? There are times when I need to speak up. We go for walks in the neighborhood and he sometimes gets ahead of himself so I remind him to slow down and regain control before he falls. His feet sometimes freeze and I may give him a touch or a verbal cue. When he struggles to get out of a chair, I remind him of the sit to stand mantra- nose over toes and up he goes. It doesn’t work but it helps lighten the mood.

The thing I most need to remember is that my husband is the one living with this unpredictable illness. I need to trust that he knows where his limits are and stop trying to push them for him. He understands the value of movement in his situation better than I ever could. I need to remember that encouragement is positive but can quickly turn into negative nagging when it becomes too much. He knows what he can do, I just need to let him do it. 

There was a house fire in our neighborhood the other day. We were acquainted with the owners, having attended a Halloween party there once, but weren’t close. We didn’t know that the wife had passed away a short while ago nor that the husband was suffering from dementia. Their son was living with him. Eyewitnesses said that they both got out, this was confirmed in the newspaper reporting them as displaced. Eyewitnesses on the day told us that no one was hurt in the fire. They did lose their pets.

It was terrifying for me because it all happened as I was returning from my volunteer job at the museum. I was a mile away when I first saw the smoke, big black plumes roiling up. I couldn’t really tell where it was coming from, but knew it was close to our house. I tried to call my husband and he didn’t answer. Panic set in. I dialed again but before I could finish, my phone rang and it was him. He was okay and our house was not in danger.

The fire was big but the fire department was able to contain it to just one home. It gave me a chance to reconnect with our neighbors which gives me a thought. I really need to ask them for their phone numbers. If I hadn’t been able to get through to my husband, it would have been nice to be able to call one of them to find out what was happening. This doesn’t just apply to a fire situation, I need a back-up plan for connecting whenever he is home alone. I will be talking with several of our neighbors today to set up that emergency call line, and let them know that I am here for them too. I don’t want to wait for the next crisis, I prefer to be prepared.

When you live with someone, whatever the relationship, there will have to be negotiations and compromise. When we add Parkinson’s Disease to the mix, compromise becomes so much more important. We compromise on activities we do, adjusting timeframes to fit his “on” schedule with his meds. We revise travel plans for retirement because of the challenges PD has brought to his mobility. We adapt our home environment to better serve both of us. And we accept that this is what life will be as we do our best to still live fully every day.

My husband’s journey is a compromise between symptoms. Different treatment options can create different challenges. He was developing a debilitating tremor and decided to have Deep Brain Stimulation. The compromise, or trade-off, is that he now has balance and voice issues. It was a choice he made without knowing the full ramifications, but the tremors are under control. He could be taking more or different medications but most of them come with potential side effects, he chooses not to go there. I revise care for him to support whatever issues his disease and the treatments present.

In my role of CarePartner, I do what I can to minimize our challenges. We buy furniture that fits him, we modify our home to make life easier and safer, I adapt my schedule to be sure I am available for him when he needs me the most. I encourage him to do as much as possible for himself to maintain his personal sense of self. I accept that my life has changed with his diagnosis just as his would have changed had I been the one diagnosed with PD. We are in this together and we can adapt and grow as we figure out what comes next.

I have taken over a lot of yard work that my husband used to do. In some cases, they are tasks we would tackle together, things like trimming bushes and the spring cleaning out of weeds. Some of this I have passed on to our lawn guy, but I kept part of it because it gives me a chance to be outside and enjoy the spring/summer weather. Recently my husband suggested that it might be time to tackle the bushes out back. I usually do only 1 at a time rather than try to do them all at once. A couple of days ago we decided it was time for the forsythia.

The bush was about 8 feet high and 6 feet wide; it needed to be about half that big. I gathered my tools and started working. The next thing I know, my husband is there to help. He doesn’t have the  balance needed to trim the bush, but he can cut up branches to go in the yard waste bin. We brought a chair over for him, then I cut branches and passed them off so he could make them small enough to fit in the bin. It reminded me of past years when the roles were reversed, he would be the trimmer and I was the clean up crew. It was nice to have the company, the help and the job went much faster.

He is not going to be able to help me all the time nor would I want him to. There are times when I go outside to take a break, so I need the silence. On the bigger jobs, where he can participate safely, it is good to share the load. I know it’s difficult for him to let me take the lead, but we are figuring it out. He helps with chores and it is good for both of us to get the fresh air. It’s a winning situation for everyone.

I had a doctor’s appointment yesterday followed by a couple of hours volunteering at the museum. My husband is able to stay alone safely, yet still I was concerned about leaving him alone for most of the day. I made sure that he had something for lunch and was able to stop by the house between my appointment and my volunteer hours, however it was still stressful. I had to remind myself that it was all okay and that it is vital that I prioritize self-care ahead of caring for him so that I can continue being an effective CarePartner. It doesn’t make it any easier.

I have been having problems with my left shoulder for a while, the specialist I saw yesterday confirmed that I have post injection deltoid myositis. That’s a lot of words to say that I had a reaction to a shot and now the muscle in my arm doesn’t work. There is no treatment other than to keep using the arm, things should get better over time. This is problematic since I often need both arms when helping my husband. I am thankful to know what the problem is and I have an excuse to exercise with my husband as I am treating my own problems while working on his. My self-care and his care can work in harmony for once.

It has taken me almost a year to have the issue with my shoulder addressed. Part of that was due to delays in scheduling appointments, but most of it was my hesitance to admit that something was wrong and that it was important enough to deal with. I tend to stuff my problems behind the belief that if I ignore them they will go away. In this case, it wouldn’t have made any difference had I gone sooner for treatment but that is not always going to be the case. If I am not taking good care of me, I cannot take good care of my husband. I know it, I just need to remember to practice it.

Gratitude for my life is the thing that gets me out of bed in the morning, the realization that I have been given another day. There will be challenges and I will overcome them. I can do this, I am doing this and will keep on doing it for as long as possible. Life isn’t meant to be easy, but I hope it can be interesting and rewarding. At the end of everyday I need to be able to look back and say I did my best.

To be able to say that I did my best I need to actually do something. However doing something can look different based on how I and my husband are feeling on a particular day. It may mean I am very busy with chores or I may choose self-care in the form of light duties. Whatever it is, it must always be done with positive intention. I am thankful that most of the time I have the opportunity to decide whether to face my day with a smile or a frown. It is always about the mindset I choose to have and I want it to be positive and productive.

Being a CarePartner is a difficult job as I watch my husband’s struggles and wish I could do more to help. I am thankful that he is willing to share his journey with me and will accept my help, I hope we have many more years together. I am thankful for our home even though it means more work for me as I try to keep up with the daily chores. I am thankful for the many friends I have who are facing similar struggles and for their understanding as we all keep on each and every day. I am thankful for family who love us and support us as they can. I am especially thankful for the fact that the last words I hear before I fall asleep at night are “I love you”. That is my true reward.

I was at our monthly CarePartner get-together this past week when our conversation turned away from Parkinson’s and to a more controversial topic. It was an interesting discussion because even though our group is relatively small, we had 8 at the table, different viewpoints were represented. The thing I was most reminded of was that this disease can hit anyone at any time. It is thought of as a disease of the elderly, but that is not true. It strikes men more than women, but it appears that statistic is changing. It is now reported that approximately 40% of those diagnosed are women, 20% are under the age of 50.

There are over 10 million people worldwide diagnosed with this disease. PD crosses all races, genders, ethnicities, socio-economic groups, religions and political affiliations. When I add in family members who serve as CarePartners, it would be ridiculous to assume that we all share the same ideologies. Which is why I shouldn’t be surprised to learn that even in our small group there are disagreements about politics and social issues, yet we all stand together to support one another in this battle.

Our backgrounds have been very different but our paths have crossed now thanks to someone we love being diagnosed with Parkinson’s Disease. I don’t know why we are here, but you should know that even though I may not vote for the same politician or share your personal beliefs, just as you may not like some of the things I say or do, I will always be here to support you in whatever way I can in your personal journey as a CarePartner.

The statistics I mention come from an article I found on the PD Avengers website. It can be found here Not your Grandfather’s Parkinson’s Disease by Rebecca Miller – VISIBLE Magazine.