“My husband has had Parkinson’s disease for 11 years. He is 58 years old and getting into advanced stages now. Our whole life is Parkinson’s: about how he doesn’t sleep and his foot cramps; all his medicine he has to take. That’s most of our conversations, and it’s getting very depressing for me. I have tried to tell him to talk about something different and now I have given up on this matter. It wears me down. Please help!”
—ANONYMOUS, PARKINSON’S CAREGIVER
Unfortunately, the above sentiment expressed by a Parkinson’s caregiver is quite common. It’s especially common among spousal caregivers, as they spend most, if not all, of their time with their loved one.
If you’ve been caring for your loved one for some time, Parkinson’s can end up consuming your life. If Parkinson’s is taking over your life, there are steps you can take to regain balance.
Remember this mantra: “Caregiving is something you do—it’s not who you are.” Though caregiver may be one of your roles, it’s important to realize and remind yourself that you have other roles as well. In my case, I am also a wife, a daughter, a sister, an aunt, a friend, a swimmer, and a writer, among other things.
If you dig deeper, you’ll find that I’m sensitive and empathetic to those in need (in particular, the elderly), and I tend to wear my heart on my sleeve. I’m also analytical, super competitive, and very passionate about a lot of things.
Take some time to think about who you are and the roles you play in your life. Knowing yourself will enable you to figure out what your limits are, as well as decide what you feel comfortable with and how much you are willing to give in your caregiving role.
I talked about setting boundaries already (see chapter 4), but it’s worth repeating how necessary they are. As a spouse caring for someone with Parkinson’s, there may be assumptions that you do everything. Friends, family, even doctors and nurses may say, “Don’t worry, the wife/husband will do it.” Sometimes people assume that because you’re the spouse, you should be prepared and willing to do everything that needs to be done.
It’s okay to express that you’re overwhelmed in your caregiving role. We all have limits, and as a spousal caregiver, you don’t—and shouldn’t—have to do it all. Setting boundaries with which you are comfortable is an essential step in ensuring that you are able to be the best caregiver you can be. Talk to your spouse about how you’re feeling, and in a loving and caring way, discuss what you are and aren’t willing and able to do.
It’s easy to put your life on hold while you’re immersed in a caregiving role. The problem is that you probably won’t know how long your life will be on hold. In the meantime, you could lose out on many opportunities.
Having goals can help make life more exciting and give you something to strive for. To help you achieve your goals, make sure you are consistently working on them. Even if it’s for only 15 minutes a day, you’ll find that your goals gain momentum if you stick with them consistently over time.
If you’re caring for your spouse, you may find that the give and take in your relationship has become very imbalanced as time goes on. One of the things to remember is that your loved one is capable of giving back, even if it’s just in small ways. If they can’t help around the house or do tasks that they used to, you can remind them that they can still listen to you and express their gratitude, both of which can go a long way in your relationship.
It’s easy for a marriage to get lost in Parkinson’s. Your social time together may be hampered, especially if you have a partner with PD who can no longer do the things you used to do together (for instance, going out dancing). Finding new activities that you both can do is the key here. Allow yourself to simply be with your partner instead of focusing on what needs to be done all the time.
If you find this hard to do, consider giving up caregiving tasks that may be more demanding or that cause stress in your relationship. Hiring someone to come in to take the load off you can enable you to focus on spending more quality time with your spouse.
Always remember: Don’t let Parkinson’s get between you and your spouse!