I wrote recently about a fall I took and how my husband, in his desire to help, wound up falling on top of me. Neither of us sustained severe injuries, thank goodness, but it reminded me that we really need to talk about what to do if I have an accident or if I am sick. He needs to know what to do in the moment as well as what to do longer term to care for himself. I could have easily broken my hip when I fell, what should he have done differently in that situation?

The first conversation we had, after the fall and once we were in a safe location, was that he really should have let me be. If I had been seriously injured it would have taken a professional to get me out of the hole. Otherwise, I needed to have the opportunity to assess the damages and then act for myself. I know how difficult it would be for him to just stand and watch my struggles because I had to learn to leave him alone when he falls. His not acting until I knew the extent of the damages would have been the best action he could take.

Beyond that, I need to make sure that he is aware of my back-up plan for when things go wrong. We need to discuss who he might call in the event something happens to me. He needs to know that I have several meals in the freezer in case I am not able to cook for a few days. I need to keep our monthly wall calendar up to date so if someone comes in to help, they can see our appointment schedule. I need to post information about where to find his medical information and outlining his daily needs somewhere accessible so whoever comes into help knows what is expected. We need to keep this information updated and revisit it regularly so we are ready when the unexpected occurs because, after all, I might have broken my hip in that fall. 

My ability to help my husband isn’t always limited by what I can do, but what I should do. It would be easy for me to do more for him, but would it be best for either of us? He recently had some dental work done and I found myself stepping up the level of support I was providing while he was recovering. Now that he is better, it is time for me to step back and let him take over again. I need to encourage and allow him to do as much as he can now to preserve his skillset because it is likely there will be a time when he isn’t able to do as much.

There are going to be things that he can’t manage and I have to decide whether I have the capacity and the ability to do them for him. Neither of us want my days to be simply about providing care for him because we understand that could seriously impact our relationship as a couple. When we get nearer to that point, I will look outside for additional help. If we hire someone with the proper training to help both of us along the way it will free me up to be his wife and partner in this journey, not his caregiver and nurse.

I know my tendency is to do it all myself. I am a fixer, I am a carer (is that a word?), I am an overachiever. I am going to have to be realistic about what he should be doing for himself, what I can do for him, and what is best done by a professional. My task is to make sure that my husband receives the best care by discussing his needs with him, setting limits on what I do, and then following through to make sure everything else is covered.

“I statements” are great tools for communication helping both parties in a conversation articulate and clarify their individual positions. It basically forces each person to take a moment and explain their thoughts on a personal level. “I feel ____ when you ________.” This is especially helpful during disputes, and I realized recently that I can use this same principle on an individual basis when having internal conflict or facing challenges.

“I statements” are defined as “a powerful tool to help you express your feelings to someone else without assigning blame or making them feel defensive” on the website Socialself.com. They go on to say it is a way to “show that you’re taking full responsibility for your feelings.” When I am feeling frustrated or challenged in my own life, wouldn’t it be great if I could take a moment and use this same framework to clarify what is bothering me and define everything I am feeling? If I can let go of blame and turn off my own defense mechanisms, I can own my feelings in the moment. Once I understand what is bothering me and how I am feeling, I have a starting point to figure out how to fix it.

I have a lot of difficult feelings thanks to my husband’s diagnosis of Parkinson’s Disease. “I statements” encourage me to stop, figure out what is actually happening, and then articulate my thoughts even if just to myself. “I am sad when my husband’s PD doesn’t allow him to go on walks around the neighborhood with me anymore.” I clearly define and own the loss, I place the blame on his disease where it belongs, and I better understand my feelings so I can work towards finding a resolution.

To see more about “I statements” visit I-Statements: How & When to Use Them (With Examples) (socialself.com).

Self-care is one of the most challenging components of being a CarePartner. I often find myself getting so wrapped up in caring for my husband that I lose track of my own needs. Things happen out of convenience rather than choice. My personal needs end up at the bottom of a very long list and never seem to work their way up. I stopped to take a look at some of the things I was doing and wondered is this really the best I can do? Check out the following list of questions I asked myself and see what you think.

• When I get my haircut at the same place and the same time as my husband because it’s convenient, is that really self-care?
• If most of the new clothes in my closet aren’t things I purchased from a store, but are t-shirts from annual fundraisers for the local Parkinson’s organization, is that really self-care?
• Dining out at specific restaurants simply because they are easily accessible, have comfortable seating and serve foods I know my husband can manage, is that really self-care?
• Choosing not to do things I enjoy because he can’t go with me, is that really self-care?

There are other things that I could add to this list, but should I? I would argue that all of these things are indeed self-care or at the very least self-preservation. Parkinson’s Disease has brought change to both of our lives and with that change comes compromise. My task will be figuring out how to balance that compromise so that we both can get what we want. Good self-care for me may mean that I am conscious of what I am doing, aware when I am putting my needs at the bottom of the list. Then I can intentionally shuffle that list occasionally so we are both getting our needs met. I think I’ll start by finding my own hairdresser.

Our days have become very Parkinson’s focused. As an example, my husband now takes pills 6 times a day, but can’t eat for an hour before or after. The pills make him drowsy, so he naps often. Knowing that exercise is the best remedy for PD symptoms, we workout together four days a week for an hour each time. He also has a 60-minute movement and voice class once a week and a stretch class on the weekends, we schedule chores or other activities around these. We attend a PD support group regularly as well as an informal PD breakfast group. Finally, we strive to get 7 to 8 hours of sleep every night but that is often interrupted by tremors or trips to the bathroom. PD may not be terminal, but it definitely has made an impact on our lives.

In the midst of all of the things I do to support my husband, people are reminding me to take care of myself. I am supposed to find outside interests that provide a break from the realities of living with someone who has PD. My husband is able to be alone for short periods of time which allows me the opportunity to volunteer for a few hours at a local museum. I am also learning to take short walks around the neighborhood or quick trips to the store alone. Unfortunately, I find myself feeling anxious and guilty for leaving him at home.

I will work on finding things outside the PD world, but when I have the time, I don’t have the energy and when I have the energy, I really want to spend it with my husband doing things we enjoy together. So, for now, it will be those small breaks I am able to take while he naps or on the days when I don’t exercise with him that will keep me sane as we continue this unrelenting journey together.

My husband wears tennis shoes with laces and his new pair are difficult for him to tie. Of course, since I am there anyway helping him with his socks, I volunteered to tie them. I don’t wear shoes with ties having replaced them with slip-ons years ago. I have arthritis in my fingers which makes the job difficult and even painful at times, yet here I am being the good caregiver and doing it for him anyway.

I was at a CarePartner get-togethers yesterday morning and someone else at the table asked about shoes. The discussion led to my situation of helping him with his laces, which seems minor, yet it is a challenge for me. Two of the other people shared that they have switched out their husband’s shoelaces for elastic laces. It was like a lightbulb went off in my head. Of course, I still have to get him to agree to try them but what a great solution to something so basic.

Which brings me back to my original thought, when my husband asks me to do something for him that I won’t do for myself, I need to stop simply saying yes. I had valid reasons to stop wearing shoes that needed to be tied. I need to respect my own limitations in providing care for my husband. There may be times when I am asked to do things that are difficult, and I will choose to do them anyway. I do need to remember that if it is something I wouldn’t do for myself, then perhaps I shouldn’t be doing it for him either. We can always find a better solution that works well for both of us.

I finally found a therapist and we start meeting this week. Just figuring this out has been a challenge and, if I were seriously depressed, I would have given up but that is another story. Instead, I am looking forward to the opportunity of working with someone and hope that she will be able to help me figure some things out. I think the first thing we will have to work on is exactly what it is I am looking for.

The therapist emailed me 9 documents to complete prior to meeting with her. A lot of it was basic information, address emergency contacts, insurance coverage, details she needed for the business side of things. There was a questionnaire, however, that was her first delve into the meat of the situation. She asked me why I wanted to see her, what I hoped to get out of therapy, where my strengths lie and what areas I need to develop. Then she asked what I like most about myself and I was totally stymied. Is there anything right now?

When I wanted my lawns cut, I hired a landscaper and when I needed help moving furniture, I called my son. In those cases, I knew exactly what was wrong and how to fix it, but with therapy, I am not sure I even know what I need. Perhaps that is why is has taken me so long to actually seek counseling. The questions she sent have already opened some doors, but am I sure I want to go through them? Where will this lead and will the answers I find give me the peace I need to move forward as a CarePartner? Maybe that is what I really need to ask for, I guess I will find out.

When we were looking for shoes for my husband recently, I was introduced to a whole new world of adaptive clothing. Velcro, zippers with large pulls, stretchy materials, hidden elastic panels, clothing of all types designed in ways to make getting them on and off so much easier. It was eye opening. However, I have a husband who doesn’t like change. He has had the same haircut for 60 years now other than it is getting a little thin on top. Rather than try to get him into different styles of clothing, I decided to look for ways that allow him to wear what he likes while simplifying the process of getting dressed.

One thing that immediately comes to mind is going up a size.  He likes to wear blue jeans and by going a size bigger they slide on easier. He is able to still manage a belt, so they don’t fall down or ride too low. He enjoys button shirts and had always tucked his shirttails in. We had a talk and weeded out form-fitting and longer shirts so that what he has left are loose fitting with squared bottoms or shorter tails. If I leave all but the top 2 or 3 buttons done up, he can slip the shirt over his head like a t-shirt. This works great with short sleeves, and we’ll be experimenting with long sleeves soon. He likes to wear t-shirts or sweatshirts and can manage those on his own. Socks are an issue for my husband.  He can put on ankle socks but says that his shins get cold. If I am able to buy loose fitting socks, he can put them on but then they bunch up in his shoes, so for now I am still helping him. Once the socks are on, he does his own shoes.

Being able to continue to dress himself comfortably has been important component in my husband’s journey. The minor modifications we have made help him maintain his individuality and support his dignity. I am always close in the event he needs additional assistance. Everything he is able to do for himself lightens my load, a winning situation for both of us.

This morning is a great example. We always go to the store Thursday mornings to stock up for the week. My thought was to take my shower early so my hair would have a chance to dry naturally before we went out. That was my plan and I even shared it with my husband. That’s when things started to go a little haywire.

As I headed in to take my shower, my husband suddenly (or perhaps he just remembered it) developed a sore toe that I needed to look at. That took about 10 minutes. Then the cat needed attention, another 5 minutes down the drain. I remembered an email that needed to be sent and meds that needed to be ordered. Small interruptions to the plan, yet by the time I took care of them I had lost any time advantage I might have had. I’ll still get my shower, but I’ll be going out with a wet head, something my mother always gave me grief about.

The interruptions to my plan started to irritate me but then I stopped, took a deep breath, and realized something. Those disruptions are the things that give my life meaning. I am glad that my husband asks for my help rather than letting things go until they are really bad. I enjoy having a cat and the added work is nothing compared to the comfort and entertainment she brings. The emails I send help me stay connected to the world outside our PD diagnosis.  Rather than be irritated, I need to be thankful that I have these interruptions in my life because they signify purpose, connectedness, and love. Things that are definitely more important than any personal plan I might make on my own.

I have a list of words on my desk that come from a support group webinar I attended a while back. The vertical list reads “acceptance, anger, connection, energy, frustration, guilt, irritability, openness, optimism, patience, self-compassion” in that order. As CarePartners, we were encouraged to look at these words and consider our own feelings regarding each of them. As I said, they sit on my desk where I can see them every day but at a glance, I only catch the top third usually ending at “frustration.” What I wonder is whether these words, simple as they may be, are unintentionally setting a tone for my day? Would it be better to rearrange the list so that I see only positive feelings rather than interspersed with negative ones? After all, sometimes it is the little things that matter the most.

The list begins with acceptance, a rather neutral concept. What if it started out with optimism? Then, I would drop the next word which is anger and replace it with openness followed by connection and energy. I would round out my top five, which is usually all I see anyway, with self-compassion. Replacing those negative words that I look at every morning with more positive ones, could it really help change my outlook?

I often hear that mindset is everything. If I am going to be happy, I need to think happy thoughts and surround myself with happy images. I am going to revisit the list of words, not to think about how they impact me but simply to rearrange them so that the positive ones are what I see most. Who knows, maybe it will help me start my days with thoughts of optimism and openness rather than acceptance and anger? I definitely think it’s worth a try.