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.

I know my husband better than of his doctors or the other specialists who work with him. I am here every day watching him exercise, or not, and have a better grasp of what works for him and what doesn’t. That is why, when his Primary Care Doctor offered him a referral to Physical Therapy during his last appointment, I spoke up and said “No”.   

When he arrived at his appointment with a black eye from a recent fall, she thought that a Physical Therapist might be able to help him work on balance issues minimizing the danger. She even offered in-home support before I spoke up and said that I didn’t think it would help. I explained that he went through two rounds of PT last spring. I then asked my husband to share how often he practiced the homework that he was given during those sessions. While he is motivated to exercise with his boxing group daily, getting him to do PT on his own time is impossible.

The medical professionals have a job to do and so do I. A big piece of mine is making sure treatment plans are grounded in reality. As I said before, I know my husband and I know what works for him. I also know that while he understands some of the limits his disease places on him, he is still going to test them every so often. His most recent fall happened when he leaned over to set something down on uneven ground even though he readily admits he has balance issues. It was no surprise when he toppled over. Our solution is antiseptic cream and bandages because no amount of PT is going to stop him from trying to do things he shouldn’t, I just need to be ready to help him when those inevitable falls happen. 

It’s difficult to be positive when I see what this disease has done to my husband and to our relationship. Intimacy is challenging, lines of communication are tangled, roles are muddied. There is the knowledge that many changes are still to come. The uncertainty of where it will lead, what will be asked of me. It can seem impossible to find anything to be grateful for.

Add to that the shame I feel in those moments, shame that I am not stronger and more able to see the positive sides of this illness. I should be thankful that my husband is still with me, several of my friends are now widows. I should be thankful for the lifestyle I lead, while it is not what I expected in retirement, I am comfortable and my basic needs are well met. I should feel gratitude upon waking each morning just to see the new day ahead rather than wondering what new challenges are coming my way.

I am lucky in that the symptoms my husband’s illness has developed are manageable and our lives are not more impacted. I need to remember just how bad things could be, my father was wheelchair bound and lost in a world of hallucinations by his 6^th year post diagnosis, my husband is twice that far along now and showing very minimal cognitive changes. I need to be grateful for where we are because gratitude will lead me to a positive mindset that will allow me to continue in my journey. There are plenty of opportunities for me to be negative, I need to build a positive core based in gratitude for what I do still have and let that be the strength I lean on each and every day.   

We recently met someone who had just been diagnosed with Parkinson’s Disease and was still trying to figure out exactly what that might mean. He asked many questions and observed my husband carefully as if looking at him might be a clue to his future. We both realized that the most important information he needed to hear in that moment was “If you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”.  My husband shared that watching him was okay if he wanted to discover how PD was presenting within my husband, it would not show what the diagnosis might mean to him.

I remember being there early on in our journey. I was afraid of joining a Parkinson’s support group because I was afraid of what I might see. I expected that there would be people who were more seriously impacted and I didn’t want to think I would be looking at our future. My only contact with Parkinson’s Disease had been with my father and it was ugly. I wasn’t ready to face the possibility that we might be there ourselves someday.

We talked with our new friend, answering some of his questions, and gave him information on all of our local resources. We encouraged him to stay in touch. Most of all we encouraged him to always look at what he can do, not what he can’t. Our key to beating Parkinson’s is always to keep a positive attitude and to keep on fighting. He can’t know for sure where PD will lead him but he can still live a full life, and that is the piece of this journey that I know we can share and model for him.

We have been working on our house for a couple of weeks now, updating one of our bathrooms to ADA standards. As with any project there have been issues, minor glitches along the way. It has been difficult for me to keep still and let the contractor and his team take care of things. I am a fixer, this is my house, and I want to fix it. But, I have enough on my plate already, and I am not a builder which is why we hired them to do the work in the first place. I just need to stay out of the way and let them do their jobs.

We have pets, a dog and a cat. My husband has always been the dog person and has been primary in caring for him. As the dog ages and my husband’s Parkinson’s symptoms progress, some of the dog related tasks have become more difficult and I find myself stepping in to “help”. What has actually happened is that I have taken over some of the things he was doing under the pretense that it is easier for me. Of course the tasks are easier when I do them, but that doesn’t mean I should be taking them away from him. I have enough to do without stealing his chores.

My life as a CarePartner is full as I try to juggle caring for our home, making sure my husband’s needs are met and finding some time for myself. When I accept, no when I take over, tasks that actually belong to someone else I am just asking for overload. I can only do so much and do it well, I need to leave tasks that belong to others alone and give them the opportunities to display their abilities too.

My husband is always ready to try to do things to help, yet he is also usually aware of the limitations his illness places on his abilities. He knows that he tires quickly and will stop and rest, he knows that he is not as strong anymore, especially on his left side. He knows that he shouldn’t use power tools because his reflexes just aren’t as quick as they used to be. And he knows that he has balance issues which means he shouldn’t be leaning over to pick things up or set them down, something that was driven home to him just yesterday.

I went out to do some yard work and, in typical form, he followed me out. I was clearing out weeds and he was trying to be helpful. I asked him to bring me something from the house and when he did, rather than handing it to me he attempted to set it on the ground. He lost his balance and toppled over bumping his head, shoulder, and knee on the concrete before rolling to a stop. I immediately moved from the role of minimal to maximum caregiver as I helped him get up and go inside to assess the damage. Needless to say, my yardwork was done for the day. Ice packs, bandages, and ibuprofen for him, a glass of wine for me and we made it through.

I can only imagine how difficult it is for him to have to be sidelined as I work doing things we used to do together. He wants to do them but, unfortunately, PD has another plan in place. I thought I was giving him tasks that were safe and that would allow him to help, I was wrong. I must remember to discuss any shared tasks and look for any potential issues before starting. And, I must take the initiative to tell him when I think that he needs to step back and observe for safety’s sake.