Couples & Parkinson's: Not Fight(ing) Club
The not so wonderful thing about Parkinson's or any cruddy life situation is that it tests not only the person it happens to, but its debris lands on anyone within arm's length. For couples, this means we not only share metaphorical "paychecks," but we share "bills," too. Thus, it's safe to say that everything Parkinson's took from me, it robbed my wife of it, too. Theft leads to frustration. Frustration leads to anger, resentment, and hostility.
Anger, resentment, and hostility lead to the dark side.
As all couples know, it's safe to say there are many instigators for arguments with our most important caregivers. We don't intend for this, but... Stuff just happens. It's kind of like life for non-Parkinson's couples. It's just Parkinson's turned up the bad to 11, which is one louder.
Life with Parkinson's. And my wife.
In all healthy relationships, there is friction. For example, my wife doesn't believe in giving 3-hour backrubs. I'm not impressed. Just kidding, but no, it sure would be nice.
To be honest, our number one argument is my Parkinson's-induced anxiety while she's driving. She's a good driver, it's just my neurological road map tricks me. I go all bonkers and think we're going to hit someone or someone will hit us. I panic and will blurt out, "WATCH!" or "STOP!" and she will get defensive. I will apologize, but it's not easy for her. Thus, Parkinson's leaves me in the doghouse.
This leads to being testy, which means we lack quality time while Parkinson's taunts us from the side... because it can.
Other than that, our challenges are mostly clean up after your office argument issues or needing to help her out more issues. For me, it always goes back to the backrubs, seeing as she gave in to my requirements and made me "a bundt cake with love." She also got me a "PSA 8 Roger Maris" for a wedding present. Yes, kids, wedding presents are a thing. Who knew?
Generally, I'm pretty low maintenance, so I'm good unless I'm competing with the Real Housewives for attention. They're awful, so that's not fun.
As we're now coming up on the 13th anniversary of our first date (December 1) and passing our marriage anniversary (August 15), I can say my wife and I have made it through many things couples fight about and come out better for it. Since I'm a historic writer, I can tell you other dates, too: first love, when I knew she was a keeper, engagement, and when she got me Christmas gift certificates equal to 3 hours of massages.
I'm definitely happy for what we have, but it takes work, thankfulness, apologies, and sometimes giving up watching baseball games so she can watch Vanderpump Rules.
If only that got me another 3-hour backrub.
Common relationship problems
Psychology Today listed some common problems couples have. I'm borrowing a few to talk about them in regard to Parkinson's couples.
- Communication: Be your own advocate, on both sides. Tell the other person what you need while it's possible. Don't assume anything. If you need time alone, just ask for that too. Space rejuvenates couples.
- Affection: Never forget the 'I love you' statements, the flowers, and the little things. They matter, as does the handholding or sitting together on the couch.
- Sex: 3 out of the 30 problems listed in the article were realted to sex and intimacy. While some meds can instigate extreme levels of interest, more meds and urinary issues wipe out interest. It's real, and yes, Parkinson's sucks. When the naked stuff is gone, it's all about words, memories, and simple affections. If there are no common interests, what then? Thus, go back to 1 and 2.
- The boss: For me, I'm OK with letting my wife handle what she's better at or things I can't do. For instance, she aligns the Christmas tree. I write the Christmas cards. Also, we've always worked on the vested interest point of view. For example, she has better taste in what the house looks like, so "pick a color scheme, Heather." We decided on the house itself together. I'll choose the size of the TV.
- Future plans: Just like number 3, Parkinson's controls a lot of your future plans, but the bucket list goals and vacations need to be prioritized in order of importance to both parties equally. What really matters and what doesn't? I can hobble through the Louvre, but I need to be more physical for the canyon out of the Grand Gallery. I don't need to climb Mount Defiance like I thought I did in 2014. Thus, my physical state battles both of our individual desires for a place.
- Being in control: I'll deviate from the boss on this and say that we need to do things together that both sides of the couples equation wants to do. It's the same with who we do them with. Parkinson's eliminates interests and isolates people. Both parties need to ensure that these avenues remain open. If not, one person may become resentful or neglected. Many people have trouble asking for or receiving help. This tough person stuff doesn't work for anyone. This is the hand of cards that was dealt. You can accept it or hate it, but it's still the hand you're playing. You might as well put on the big kid pants and take a deep breath while accepting it.
- Privacy: Caregivers need an outlet. Parkies (people with Parkinson's) need one, too. We can do this by being all 'Hemingway' and allude to certain things not working. It can also be done in detail, when necessary. However, if we don't find a trustworthy outlet and an ability to discuss Parkinson's health issues with outside help and one another, we create a recipe for disaster. Nobody wants compounded problems.
- In-Laws/Friends: They can be a problem if they don't get it, are far away, and aren't supportive. How much and how they help could also feel intrusive or isolating. It's important to be able to talk openly about this potential landmine.
- Children: How do we raise them and help them cope? Should we have any? I don't have any (PD put the final nail in that decision), so I'll send you to Maria DeLeon who wrote about Parkinson's and having children.
- Money: Yep... That one is always there, isn't it? Sometimes it's necessary for Michael Scott to tell Jan to cool it (The Office reference, sorry). Parkinson's magnifies this issue in light of the uncertain future and the dreamed about bucket list. When we can't run for the train, how do we agree on a plan?
Making the relationship work
The list I had listed jealousy, but with PD it's more the root of jealousy - insecurity. Sometimes I think, "Will you leave me when I can't give you what I used to?" I wish I knew how to approach this other than to talk openly with each other and trained counselors often. Somethings you just can't go alone. Also, I don't want to single out posts on this website, but all too many people ended up here.
For caregivers, I would list burnout and the inability (as opposed to lack of interest) to help. Having PD is a cruddy experience. It's not easy to handle some of our issues. To be honest, I don't like handling some of my own issues.
Some caregivers can't get past the loss of function in a loved one. Other people feel like the things they try don't work or they feel at a loss since the person with Parkinson's still regresses. Still, others will help to the point that they subtract from their own state of wellness. I get these as opposed to outright abandonment that comes from the 'I didn't sign up for this' mindset when the caregiver is not even trying.
That said, every caregiver needs to find their own way through this. Who am I to tell you what your own answer is?
Talk to each other, family, friends, therapists, and support groups. We need you and appreciate you because we know you're giving it your all. We want the best for you, too, because we love and care for you in the same way you care for us.
In the end, we have to be open, we need to listen, and we must compromise while accepting Parkinson's runs the show. Easy, isn't it?
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?