It's Friday again!'
And I'm here today with two questions from caregivers who seem to be at different stages in their PD lives. Really, some caregivers are brand-new to all of this. They want to know how to get themselves started at caring for their loved one with PD. Others, after years of caregiving, may be finding themselves out of gas, not sure what to do next.
I hope these answers are good for both groups.
Q. Dear Terri,
We’ve recently learned that my husband has Parkinson’s disease. I really want to be just the best Caregiver possible for him and do everything right. Where do I begin?
At the Starting Gate
Dear At the Starting Gate
What do you want to do is really admirable. You plan to be the very best caregiver possible for your husband.
I know that a new Parkinson’s diagnosis can feel so overwhelming and we as caregivers tend to think that if we can only get everything right our situation will go back to “normal“.
But in some ways, I think that to reach such a high bar you would require a crystal ball. You would have to know exactly what’s coming down the pike and to be prepared for it. That’s not necessarily easy.
What I suggest instead as a first step is to be open to change.
Get ready for things to be different. You’ll benefit from putting in some practical systems – choose your doctors (a Movement Disorders Specialist is ideal), organize your finances (talk to an Elder Care Attorney- there are new financial and legal concerns).
Once you’ve done these things – in the first few months – then you can relax. Parkinson’s, especially at the start, tends to move slowly. So once you have these important systems in place, keep living your life as you have.
It will take your husband some time to adjust to this new intruder into his life plans. So give him time, space, and grace to react.
It's smart not to take very big steps because things will change. But as long as you can continue to work (and want or need to), do that. If you’re planning travel in the next year, pay attention to what your PWP is able to do, and then take the trip.
And in this early period, give yourself time, space, and grace too as you reset your expectations.
When you are ready, there are tons of good resources for learning about the medical and practical aspects of PD caregiving. Stick around here, I send them out almost weekly. And if you need a resource for a specific need, hit 👉 Reply and let me know.
But adjusting to the change is usually what's needed first.
Hugs x 4
How can I develop more patience?
To develop more patience with your PWP, start with yourself.
Ok. Sorry. I don’t mean to be a smart-alec. But truly, until you are patient with yourself, it will be much harder to be patient with your PWP.
Could it be that you are trying to accomplish things that just don’t fit in your current life?
It’s a sad reality that as PD progresses, once we’ve taken on the role of caregiver, we will need to adjust our expectations of how daily life will go.
PD creates changes that you can’t fix.
And if you are coming up against those changes –your PWP walks SO slowly, or creates more laundry just as you’ve folded the last load, or insists she can still drive safely – these are your cue to take a step back—to say “yes? And now, how will we proceed?” It’s an ever-changing scenario and it can help if you learn to let that be true.
This leads to being patient with yourself. It takes time to learn to be a caregiver. And you can never be perfect. Sometimes you’ll feel exasperated with your PWP, with PD, with yourself. And all of that is part of the evolution of the PD life.
And, dear “im-,“ sometimes you need to just step away from the whole situation. I certainly needed to do that at times.
Can you take a walk? (if your PWP can be left at home safely)? Can you lie down in the midst of a messy house and just take a nap? (Again, if your PWP can be left unattended for a hour.) Can you call a friend or family member and say “Your turn. I need an hour--or a week– to myself.” (If you are VERY lucky).
And if none of these things are possible, you can wait for a time when your PWP is asleep, or occupied, and listen to music or a relaxation audio. I made this one just for caregivers – it’s based on what I did to help myself during my caregiving years.
It’s necessary to take some kind of break. Once you are being good to you it will be easier to be good to your PWP.
Hugs x 4,