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Great Expectations (...or being perfectly imperfect)

It dawned on me the other day that, as a caregiver, I needed an attitude adjustment. I can’t change this abominable disease. I can’t change the fact my Dad has PD. I can’t change the progression of my Dad’s symptoms. And, I can’t change the consequences of PD which I see in my Dad daily. What can I change? I can change my own expectations as well as my own reactions.

As caregivers, if we expect our loved one to remember what was discussed the previous night as far as daily activities, i.e. when to be ready or how to be dressed, we will be disappointed. If we expect our loved one will be able to keep up with us when we stop at the store for groceries, we will be disappointed. If we expect our loved one to remember they just asked us the exact same question five minutes ago, we will be disappointed. If we expect our loved one to be light on their feet, agile, able to handle complex tasks, remember to initiate a meal on their own, we will be disappointed. And if we are constantly disappointed, those around us will see it. Including our loved one with PD. They will not understand why we are disappointed, but they will know our disappointment is aimed at them. And truly, if disappointment is all we can offer, we need to find another caregiver.

Some say caring for a person with PD is like caring for a child. Personally, I do not like this analogy, although I see the intent. This is an adult who has, most likely, lived a full life. They deserve the respect living a full life has earned them. That adult is still there. And if the caregiver thinks they are frustrated, try to imagine how the PD warrior feels. However, for the purpose of illustration, let us use the child analogy. Would we expect a three-year-old to get dressed by themselves, to fix their own breakfast, to remember what had happened in their life the day before, to organize their thoughts and make executive decisions? No. So we are neither surprised nor disappointed when they cannot accomplish those tasks. We don’t say, “Don’t you remember we discussed this yesterday? Can’t you remember you asked me this earlier? Why can’t you be quicker, we have to leave now.”

As caregivers, we need to try and celebrate the victories, reduce the frustrations for our loved one and ourselves, and stop beating our heads on walls over unrealistic expectations which cannot be met. Stephen Hawking once said, “[m]y expectations were reduced to zero when I was 21. Everything since then has been a bonus.”

How can a caregiver help reduce some of their own frustrations?

1. Take care of yourself first and foremost. (This is the hardest item on this list!)

2. Schedule less in a day.

3. Factor in more time for getting dressed in the morning.

4. Post reminders of what is coming up today, or this week.

5. Add rest time to a day.

6. If your loved one has a terrible time buttoning shirts or tying shoes, tell them to leave those for last and then call you so you can help.

7. Look into adaptive clothing. (shirts with magnet “buttons”)

There are numerous other things which can be done with a little forethought and planning. There are good ideas on the PD Foundation website as well. https://www.parkinson.org. And don’t forget to ask your loved one how you might help them make their day easier. I had not realized it was taking my Dad 20 minutes to put on his support stockings until he mentioned it. Now I can assist him with this and get those socks on in a minute or two. Saving Dad’s energy and frustration level as well as lessening my own stress about whether we will be late for the day. (The higher the PD warrior’s frustration level becomes, the more the tremors increase, the anger and impatience increases, and soon everyone is miserable.)

“When you stop expecting people to be perfect, you can like them for who they are” said author Donald Miller. I challenge all the caregivers to be realistic. None of us is perfect. But we may be perfectly imperfect when it comes to caring for our perfectly imperfect loved one.


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