Spring is coming and with it all the extra duties of lawn and garden care. These are things that I can enjoy as long as I don’t try to tackle them all at once. If I can remember that the weeds always win, it’s nature’s way of reminding me who is really in charge, then I can work on them with a light heart and find pleasure. I am even finding ways to make peace with the moles who invade our yard from time to time by filling their holes with cat litter. It’s a win-win for both me and the cat. When it all becomes too much, I need to consider hiring help, because my role as CarePartner is full enough, I really don’t need to add full time gardener to it.

It is so easy for me to let life become overwhelming. I say let, because I have a choice about how much I am willing to take on. I know how much spare time I have during the day and when there might be opportunities to do extra tasks. We have a pretty strict schedule and taking on something new will mean that I have to give something else up, I have learned to accept that and prioritize my choices. There are things I do for and with my husband that cannot be changed, I understand and work around those. I also recognize that sometimes everything has to go by the wayside except caring for my husband, and I need to be prepared for those times too.

No matter how hard I try, there will always be more work than I am able to reasonably finish. I have been known to push myself to the limits and then pay for it with exhaustion and an achy body. My husband pays for it when I am cranky and too tired to be present for him. It is not healthy for either of us and is a signal that I need to slow down or look for outside help.

Spring is a time when I can look forward and create a realistic plan for the summer months. I can choose to care for either my yard and garden or myself. I think this year I will do minimal gardening so that I can spend more time enjoying the nice weather with my husband, not with the weeds.

This is tough for me. I love the life I share with my husband but also need something more at times. I recognize that my outside activities and interests bring more to our relationship, but I also struggle with feelings of guilt for doing things without him. I find myself not doing things that I want to do, things we would have done together pre-PD. I am letting my husband’s disease create limitations on my activities. Instead of going ahead with my life and bringing the experiences home to share with him, my guilt denies that opportunity for both of us.

We just returned from a trip to the beach. I enjoy walking along the shore watching the birds and listening to the surf. My husband can join me for short walks but a sandy beach is difficult and wears him out quickly. Even our Nordic sticks can’t offer much support in that environment. On this last trip, the closest I got to the beach was a brief period on a bluff overlooking the sea. We took a nature walk on a trail that led to the beach, but only made it about halfway before he needed to rest so we turned back.

How do I break through my self-imposed guilt barrier to open the conversation? In the example above, I tried suggesting alternatives to my husband but he didn’t want to sit in the car while I walked on the beach and not all beach access is handicap accessible. If I am walking, he wants to be walking too, I get it. So, rather than argue the point, I just didn’t go.

I know that my husband is not intentionally stopping me from doing things, I am doing it to myself out of a misplaced sense of guilt. I am not sure what the answer is going to be, but I do know that we need to have an honest and open conversation about this issue. If I can only figure out how to get it started.

We are headed out to the beach later today. We’ll be spending a couple of days, relaxing and just enjoying the change in scenery. My husband asked what I wanted to do while we were there and all I could think of was to read a good book, eat some good food, and nap whenever I want. I’m sure we will also go for a walk on the beach or maybe do some whale watching. Most of all I want to escape our day to day lives for just a little while and leave some of my worries behind.  

I’m looking forward to letting someone else cook my meals and pick up after me even if it is only for a couple of days. I am looking forward to not having to care for the pets or the house. I am looking forward to having a break. I know that I will still have responsibilities as a CarePartner but they will be different and I look forward to the changes.

I love the beach and I plan to find time to take care of me even if that means going out for walks while my husband is napping in the room. We both have cell phones so we are never totally out of contact. I plan to grab as many moments as I can so that when I come back, I am refreshed and ready for whatever PD brings next. And, I will be ready to plan our next outing in a couple of months, who knows where we will go then?

My husband and I have discussed this before, and we have all the correct documents in place so either of us will be protected financially when the other dies. We addressed what should happen if we both went at once, how our children should divide our assets. We shared our plans with our children including copies of all documents for each of them. They have contact information for the attorneys who helped us in case they have questions. What we don’t have is a comprehensive list of what to do and who to contact when one of us does die, we don’t have an end of life roadmap.

We each have multiple sources of retirement income as well as investment accounts. We both are active on social media and have accounts that would need to be closed or deleted. There are checking accounts and credit cards that are connected to automatic bill payment programs. There is real property in both of our names and shared debts. I don’t want either of us to have to think about how to take care of all of this during a time of grief. Hence, we need a map to follow.

 Life is complicated, death even more so. Beyond funeral planning, what else needs to be done? I googled “Put my house in order” and found several documents that consolidate all the information needed in a clear format that could be downloaded for free. I also came across a document on the National Institute on Aging website called Getting Your Affairs in Order that outlines steps I need to take to get things started. I don’t want to leave a mess behind when I go nor do I want to be caught in that same mess should my husband go first. Now is the time to do whatever I can to make sure we are ready for end of life challenges no matter which one of us is left behind to deal with them.

I have those days, I think we all do, when it seems like nothing is going well and it is all I can do to keep moving let alone smile. I just want to push through the things I have to do so that I can get to tomorrow and, hopefully, a better day. It may be that my husband is having a bad day or it may be that I am tired and feeling overwhelmed for some reason. The negative energy being generated on a “bad day” for either of us easily results in grumpy interactions and conflicts. It is not a healthy environment for my husband or myself.

It seems too basic to simply say “keep smiling” but, believe it or not, it can help. When I am facing a challenging situation, I try to remember to take a deep breath and put a smile on my face. I know that it is really tough at times especially when I am struggling to accept the changes this horrible disease has brought to our lives. The simple act of smiling resets my attitude, helps my husband relax and reminds my brain that I am in charge.

Staying positive doesn’t mean that there will be no tough times, it simply means that I am accepting the concept that I can handle them. There will be times when I am positive that I need help and times when I am positive that I need to walk away, both part of maintaining a positive and supportive attitude. I am strong and resilient, stronger than PD and more resilient than the worst of the symptoms that are slowly taking over my husband. I can be here for him and for me, together we can and will fight this with a smile and a positive mindset of what we can do to live more fully.

Before Parkinson’s and before retirement, I always worked outside my home in a variety of positions. There was a lot of public contact and a learning component in every job I held. Becoming a full time CarePartner was quite a change as I found myself at home interacting solely with my husband most days. Granted, he is the person I most want to spend time with, but it can feel a little isolating when he is the only other person around. The only new things I learn in this role are PD related, not necessarily something I want to know more about.

Recognizing that I needed more, I started volunteering at a local museum. It is interesting work, but more importantly, it is an opportunity to step out of my CarePartner role and leave the worries behind for a few hours every week. I love interacting with people about things that have nothing to do with Parkinson’s Disease and enjoy the new things I am learning. The stories I share with my husband help to expand our world and refresh our conversations. The staff at the museum know about my husband’s diagnosis and understand if my schedule needs to change due to things happening at home.

The work at the museum picked up a few months ago and, after discussing it with my husband, I tried adding another day to my schedule. The extra day quickly became too much, and I had to accept that I can meet my own needs or I can meet the needs of others, I cannot always do both. I have dropped the extra day and have reinforced my boundaries around my volunteer position. I don’t want to stop volunteering at the museum, I need that interaction to be healthy, but I need to make sure that it is a healthy interaction. I am also looking carefully at my responsibilities at home to make sure that I have the capacity to continue in both places. Life needs to be about more than PD and it is good for both of us when I am able to bring some balance in the life I share with my husband.

We had a visit from an Occupational Therapist last year and she made many good recommendations regarding changes we could make to our home that should make life easier for my husband. One of the suggestions she had was to raise our seating to make it easier for him to stand, including raising the level of our bed. So, we purchased a new couch with a higher, firmer base, are installing a taller toilet and adjusted the height of our bed.

Crawling under our bed and changing the legs allowed me to add 3 inches to the overall height. The change was a bit of a challenge for me since I am short, but it was worth it if he was able to get in and out of bed by himself. What we didn’t realize is that if he can’t swing around and reach the floor with his feet to push himself into an upright seated position, he is not going to be able to stand. He has had several close calls and I have even been called on to rescue him because he was stuck halfway up and getting ready to fall out of bed. Needless to say, I will be under the bed today adjusting the legs back down by the 3 inches we added.

The recommendations the OT made were appropriate, but they really need to be personalized to fit our situation. The couch is not the most comfortable seating choice for me because it is a bit high, but I can make it work. It does seem to be a better fit for my husband. If all he wanted to do was sit on the bed, then the added height would have worked. However, he needs to be able to lay down and get himself back up as well, and her solution did not allow him to do those things without assistance. I think the higher seat on the toilet will be good, we shall see. What I learned from this experience is that professionals may be able to recommend things that have worked with others who have PD, we are the only ones who truly know what will work with in our home.

My husband and I just completed a remodel to one of our bathrooms so that it would be safer and we could “age in place”. We added a barrier free shower that is ADA compliant with grab bars and a handheld shower head for when one of us might be in a wheelchair. It looks beautiful and I am really enjoying it, unfortunately he has decided that he is more comfortable with our older setup and choosing to shower there.

My first reaction was surprise and anger. How can he not like it and why did we do this if he is not going to use it? Then I stopped to think, we did this because I wanted it, not him. I was the one worried about the future and what it might look like, I was the one pushing to make our space safer, I was the one who reached out to the Occupational Therapist and then to the contractor. I was looking for ways to make our lives easier and safer as my husband’s illness progresses not for him, but for me. I wanted to make sure that I was able to provide care if things turn bad, not thinking about what he might be wanting for himself. I was thinking as a CarePartner should, but forgot to take my husband’s current needs and capabilities into consideration.

We have been talking about making these changes for a long time. Right now, my husband knows best about where he feels safe and has the right to use the old shower if that is the one he prefers. Our goal in the remodel was to get the house ready for when one of us needs more assistance, we are not there yet. Instead of being upset, I simply need to step back and enjoy the new shower for myself, knowing that we are prepared for whichever one of us needs that extra help first.

Our days are pretty structured, not something I really expected in retirement, but it works for us. Most days we are up around 8, have breakfast, take care of morning routines, lunch between 11 and 12 then rest for an hour before exercising at 1. Our afternoons are when I usually take care of chores, both inside and outside of our home. I try to schedule all of our medical and other appointments in the afternoon as that tends to coincide with my husband’s medication cycle. I volunteer 2 afternoons a week and he is able to stay at home alone and be safe. Our evenings include dinner around 6, then some quiet time before tv programs and bed at 11ish.

Having outlined my day, I can now look at the areas where I am normally asked for help. My husband prepares his own breakfast, toaster waffles or a microwave meal and orange juice, I plan and prepare our other meals. I help him with his socks when he is dressing, for whatever reason they seem to be the most difficult clothing item for people with PD. I handle most of the household chores, he helps me fold laundry, vacuums and helps empty the dishwasher when asked. I take care of his personal grooming details on an as needed basis including preparing for bed at night. I exercise with him on an almost daily basis, encouraging him to give it his all to slow the progression of his PD. Mostly, I am here in case something happens and he needs me.

It may seem that my day focuses mainly on my husband and his diagnosis, however I am still able to find time for myself. Every morning, while he is in the next room showering and preparing for his day, I can be at my desk writing. I am close enough to hear what is happening, yet still able to pursue my own interests. While he naps after lunch, again I have some quiet time when I can read or check in with the world. And, as I mentioned above, afternoons are usually good times during the day for him to be alone. I can be outside working or I can leave the house for a few hours and know that he will be safe. There will always be times when it feels like things are tipping more to care for my husband than myself but overall, I think I have a good balance and hope to maintain it as we move further along in our journey with PD.

During my twelve years as a PD CarePartner, I have had opportunities to be a cab driver, a dietician/nutritionist, a housekeeper, a personal assistant, a wellness coach, a medical advocate, a nail technician, a handyperson (handyman seems so sexist), a landscaper and, at times, a nursemaid. I have so many different hats that I wear each and every day that, if they really were hats, I wouldn’t have a closet big enough to hold them all. I recently realized that amongst all of these hats is one that I often overlook but it’s probably most important, my negotiator’s hat.

This hat is the one I wear whenever I am working to overcome the many challenges we encounter. It may be something as simple as making calls to schedule appointments or it may be something more difficult as I take on the task of negotiating with my husband regarding his care. I get to negotiate with clerks and other customers when we go shopping and I get to negotiate with myself as I struggle to make time to get all of my tasks done.

Successful negotiation involves so many factors. I hear myself discussing, bargaining and debating things that I feel are important every day of my life. Thankfully, my husband is usually open to hearing what I have to say whether he agrees to it or not. Sometimes these discussions result in me talking to myself as I try to find the best way forward. My negotiator’s hat is beautiful (I imagine pink and glittery with ostrich feathers) and transitional as I work to figure things out so I can put on one of my other more sensible hats and move into action.