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For many people, the only thing worse than being diagnosed with a serious illness is having their spouse diagnosed with one. If your spouse has been diagnosed with Parkinson’s, you understand this well: you both received difficult news, but in a sense, you are on the outside looking in. You may feel helpless as you watch your spouse dealing with new symptoms and limitations, watching them carefully to see if that tremor seems a little worse today than it did yesterday.
You are used to being your spouse’s partner. Parkinson’s may change how that looks, but it doesn’t change the fact that you are a team. Caring for a spouse with Parkinson’s has its challenges. Knowing what to expect when your spouse has Parkinson’s can help you cope better and be the partner your spouse needs.
Educate Yourself
Whenever you’re facing a challenge, it’s good to educate yourself about what lies ahead. Most people know just enough about Parkinson’s to be frightened by it, but not enough to be prepared for living and caring for a spouse with Parkinson’s.
Whether you are the type of person to obsessively research everything, or you prefer to bury your head in the sand, it is important to get the right information and resources, in the right amounts. With a diagnosis like Parkinson’s Disease, you and your spouse are probably feeling a lot of uncertainty. It’s natural to try to regain some certainty by learning everything you can about the disease and trying to predict its course. However, trying to take in too much information can overwhelm and exhaust you.
Your spouse’s neurologist should be able to provide you with some helpful resources; they’ve helped dozens, if not hundreds, of spouses like you before. You can also get clear, useful information from the Parkinson’s Foundation.
Communicate Honestly With Your Spouse
When one spouse is diagnosed with a serious illness, there is a risk of a breakdown in communication that can make things more difficult for both partners. Ironically, this is especially likely to happen to couples who care deeply about each other, because each spouse may try to “protect” the other and avoid burdening them with their own fears and concerns.
Your spouse may fear becoming a burden or feel guilty about the tasks you will have to take on because they can no longer do them. You may worry about whether you will be able to live up to the demands of caregiving, or be grieving or resentful because this diagnosis has altered your plans for your shared future.
While it’s important not to dump on your spouse, it’s essential to find ways to be honest with each other about your emotions. Otherwise, you both risk increased isolation and loneliness, even when you’re in the same room. Understanding and accepting each other’s emotions can help you grow closer. Honest communication can also help you both to continue to feel like partners, rather than “patient” and “caregiver.”
Be Actively Involved in Medical Management
Parkinson’s may be your spouse’s illness, but it’s your journey, too. There are important ways to be involved in your spouse’s medical care without stripping them of autonomy. You may observe changes in your spouse that need to be called to the doctor’s attention, so it is helpful to attend medical appointments to offer your perspective (keep a running list of questions and concerns so you don’t forget to mention any during a visit).
Another way that you can support your spouse’s medical care is to become aware of what your health insurance does and does not cover, and learn how to advocate for your spouse’s needs. Financial stress for couples dealing with Parkinson’s is real. Naturally, you want your spouse to get all the care they need. Knowing what your insurance covers allows you to work with your spouse’s doctors to get the right care with the greatest possible coverage.
You should also discuss with your spouse the best way to help them stay on track with their medications. Being consistent with a medication regimen allows your spouse to function as well as possible for as long as possible. Finding a system that works for you, so they are reminded and you don’t have to nag, is essential.
Be Flexible With Your Expectations
Often, how we experience our circumstances has less to do with the circumstances themselves and more with whether they meet our expectations. It can be frightening to see your spouse struggling to do something they could do easily a few months ago. Letting go of what they “should” be able to do and rolling with what they can do today will reduce your frustration and help them feel better, too.
Your spouse may or may not be as aware of their diminished abilities as you are, but they will feel your frustration and stress. Accepting reality doesn’t mean you’re giving up on them; it allows you to be more present for them.
Get Support
It bears repeating: it may be your spouse’s illness, but it’s your journey, too. You deserve support at every step. As you focus your attention on meeting your spouse’s needs, don’t forget to find support for your own. Caregiving is noble work, but let’s be real: it’s also hard work, especially in the later stages of the illness.
You will be a better caregiver, and a happier one, if you have a support system in place. That includes not only your own family and friends, but also other people who have been in your shoes and can share guidance about caring for a spouse with Parkinson’s at home. Other caregivers will have valuable perspectives and experiences to share, and will help you to feel less alone as you navigate your spouse’s diagnosis.
To learn more about caring for a spouse with Parkinson’s, or getting your and your spouse’s incapacity planning in order, contact Estate Planning & Elder Law Services to schedule a consultation.
