I remember not long ago a man confided in me that his wife had left him. He had Parkinson’s disease. Thirty years of marriage. Now, I’m not saying she left because he had PD, but whatever the reason(s), she left. You could say, just when he needed her most.
It’s not uncommon at all for spouses to decide to leave when the other one gets sick (so much for “in sickness and in health”). I think it could be a matter of ‘having it up to here‘ and then finding out the one you’ve ‘put up with‘ for ever so long now has a condition that will not only made their life more difficult, but the caregiver’s life as well.
Parkinson’s does that to a married couple. To a father-son relationship. To the bonds between mother and daughter. To friends. It comes in and subtlety takes away the ties which once bound these relationships together by a tight knot. What may have been a relationship tied together like loose shoe laces, is now dangling by a thread, if not completely torn apart already.
The PD patient changes. They are physically familiar, but mentally, emotionally – they’re not the same and the caregiver is left struggling with how to deal with their new lot in life – taking care of someone else while taking care of themselves.
If you are a caregiver to anyone, first of all, thank you for your commitment and sacrifice. You might get hit, have to change yet another big girl or boy diaper, clean up another spill, wash another naked body, but we – your charges – appreciate you more than we might be able to say or show..
And now, here are eight little things you can do as a caregiver to, hopefully, make your role a little bit easier….
Breathe deeply and when you get one free minute (or two), please do one thing (or two) that puts a smile on your face. Go out to the garden and breathe in the fragrance of a rose. Put on encouraging music. Read a short devotional. Fix a cup of tea. And then scream.
Don’t focus on the what-ifs. They’ll defeat you most every time. Do focus on now. Things may seem like a tremendous struggle at the moment, but you have to admit that things really could be worse. Today is just one of the harder days, but when the clock strikes twelve, it’s a new day and something wonderful could be ahead that may just make it easier (the patent may turn into a pumpkin!). Don’t lose hope.
If you don’t have one already (and most likely what you’re going through is causing you to find one), get a sense of humor. Without one, you’ll often despair. Find something funny in every day. If there really isn’t anything you can find, read or watch something funny. You need to laugh.
Get yourself into a support group locally or online. You may not think you need it yet (or ever), but youdo. Especially as the road becomes bumpier. And it will get bumpier. Get some support in place now, as it will make things easier to deal with later.
You need your friends. Don’t alienate them by thinking “you’ve got this“. Accept their invitation of help. Accept their giving you an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, cooking your family a meal. Give yourself some slack and let your friends feel needed, because if they are offering to help before you have even asked, they may be able to see your need better than you do.
Try to think ahead. Your loved one’s mental faculties may not be so great anymore. A daily schedule may be useful with a reminder for doctor appointments, visitors, special occasions, etc. They have white boards that have permanent monthly calendars that you can easily change for each different month and activities. This reduces stress in many ways – for everyone.
Don’t beat yourself up. There will be good days and bad days. That’s what life is made of, only now your good days and bad days have had a debilitating disease thrown into the mix. You may have more ‘bad’ days now due to your new, unwanted role. And because this is admittedly, an unwanted role, you hate it. You loathe it. You feel like your life has been stolen along with the one you’re caring for. You have thoughts of packing it in. Giving up. Throwing in the towel. Leaving the patient to fend for him/herself and walking away. You’re tired, weary, spent, worn out. You want it to end and you feel guilty for thinking and feeling the way you do. And it’s okay. It’s normal. Your caring for the one you’re grieving over while you’re grieving over what you’ve both lost already and could very well lose still. It’s okay to be frustrated, to go outside for a reprieve and scream. It’s okay to let the tears flow. Just remember: the one you love is in this fight with you, not against you. They are just not able to fight as they once did. Try to remember them as who they were 10, 15, 20 years ago when you laughed together and went for walks together and… you know, those things.
Try to remember… if your loved one could get out and mow the lawn again, he’d do it in a heartbeat – if he could. If the wife you care for could brush her own teeth and tie her own shoes, you’d both be ecstatic that you weren’t needed for that anymore. Whatever you’re losing, they are losing as well and have been internally dreading these days coming with a vengeance. If they could, they’d take this bitter cup from you faster than you think. And remember, the cup will be dry one day, so enjoy it now while there is still some juice left – even if at times it may be sour.
I am part of an internet support group. The question was posed on the discussion board: “I was wondering if craving sweets is an unusual symptom of Parkinson’s Disease. I am still trying to get acquainted with the ever transforming symptoms of the problem.”
The following replies were posted: “I just got back from the store with a gallon of ice cream, a package of Pepperidge Farm Milano cookies, a chocolate pie and 3 bottles of Magic Shell… so I would have to say yes to your question.”
That reply was followed by another: “Let’s see- 3 bags of chocolate covered raisins, a big dark chocolate bar, chocolate ice cream, and chocolate covered donuts…”
The honest to goodness truth of the matter is, Parkinson’s disease takes a lot from a person. It takes your independence, for one. It takes the spring in your step for another and leaves you with an awkward shuffle instead. It takes the swing in your arm and leaves it motionless. It takes a happy mood and leaves you snappy and swift to bite back. And it takes your sense of smell and leaves you thankful you can no longer smell certain odors. However, while it can and often does take away your sense of taste, that leaves you with a greater sweet tooth.
Now, one can grumble against such losses and complain to those who will stop to listen, but you’ve gotta admit– this is a priceless gift, however expensive this one, wonderful luxury may turn into.
Who could ever imagine such an extraordinary blessing? We don’t need excuses or reasons stretched far and wide, stuffed with lies in order to engage in such a once formidable past time such as sitting by the pool side and eating decadent See’s Candies milk chocolate covered Bordeux’s, sprinkled with chocolate jimmies, washed down smoothly with an iced-cold Starbuck’s chocolate mocha. We need no excuse! We have Parkinson’s disease. And I say, if you’ve got it, flaunt it. Take advantage of each and every blessing it affords you. You’ve gotta start somewhere. Go for the chocolate.