When you are a caregiver for a parent with Parkinson’s you never know what any given day will bring. In my mother’s case it is a lot like parenting a child that needs constant supervision. As a parent I found kids often want to do things like adults do. Simple tasks like using the microwave or making coffee. My mother tries to do these things as well. The only the difference is she once knew how to actually do it. This is just part of the disease that literally shrinks the brain.
If you have read my previous rants on this subject you may remember my advice about having a support system. You can read the full rant here. I can’t emphasize enough how important this is. Taking care of a Parkinson’s parent isn’t just a full-time job. It can completely take over your life if you don’t have a support system. Addition, I advise you also to have a plan in place on how to handle things that come up.
Develop a Routine for Your Parkinson’s Parent
- Establish designated mealtimes
- Be consistent on medication times
- Schedule times for activities, boredom is the enemy, even something as simple as a favorite show being on at a certain time, such as the evening news, helps keep them engaged
- Try to keep nap times consistent. This is not only good for the person you care for as it is useful for planning time for yourself or catching up on tasks.
- Establish a bedtime routine, personal hygiene can go out the window if you don’t and this can lead to infections which for a Parkinson’s patient is especially bad
Once you have a plan and a routine, document it. Not only will this reinforce the routine in your mind it will be a helpful resource for anyone else coming in to help you. As her medical power of attorney, I found I was constantly having to share information. I often found myself struggling to remember details. A three-ring binder with important information on it can be very helpful. The binder contains her documented routine with medication times as well as a printed current medication list from her doctor. This is also helpful when you need to coordinate between doctors who may not always be sharing information. A contact list is also a good addition so caregivers know who to reach out to. I suggest adding primary care physicians, specialists, and even family members who the parent may wish to speak to. If you are placing a parent into respite care you will likely be asked to provide much of this information on the forms you will have to fill out anyway. I also recommend ensuring all these documents are backed up digitally as personal effects such as binders, medications, etc. tend to be misplaced by facilities.
If you are the sole caregiver or a Parkinson’s parent, you have my sympathy. The adage of it takes a village to raise a child applies equally to an adult with Parkinson’s. Using respite care can be expensive and at times frustrating; however, it can be essential for your own health. For me even simply getting a full night’s sleep is a luxury I don’t often get. I find that I am most productive while my mother is sleeping. I often do my work during these times. I also try to keep a routine for myself. Such as going to bed an hour before I plan to sleep just to do some pleasure reading.
My mother has a routine bedtime between 7:30 and 8pm. This usually gives me two hours of uninterrupted productivity or relaxation times. The downside is that she often wakes up just as I am going to sleep. Since I live and work on the second floor of her house, we use a wireless door chime system I found on Amazon. This allows her to get my attention when she needs me if I am upstairs working or homeschooling my son. One bell in the bathroom. The other I used Velcro to attach it to her walker. I then remove it from the walker and place next to her in bed when she lays down. I found it helpful to have unique sounds for each button to help me locate her faster.
Around 11 at night the bell goes off and the light on it starts flashing. I have the model meant for deaf people. so I go downstairs to my mother’s bed to see what she needs. Often, she simply needs help getting out of bed so she can get to the restroom. Once she does her business and I help her back in bed I can usually go and get some sleep. This will usually happen two more times during the night. Some nights, however, are more challenging. One night I had just fallen asleep when the alarm went off. I went downstairs to see what she needed only to find her still asleep. I assumed the cat had simply tread on the button which is usually placed next to her left shoulder each night and I went back to bed. I had barely laid down when the bell went off again. I went down and found once again she seemed to be asleep. I didn’t see any sign of the cat, so I began to wonder what was up. I went back to bed and again was just falling asleep when the bell went off again. This process repeated seven times by midnight.
At one point I went upstairs and sat on the stairs watching her as she went from being asleep to picking up the button and pressing it over and over. I went downstairs as she continued to push the button. The bell went off over and over as I went to her. She had a mischievous look on her face as I approached. I got the feeling she was messing around with me. I took the button out of her hand and placed it back by her shoulder and spent several minutes trying to figure out if she actually needed something. In the end she went back to sleep, and I went back to bed. I was awakened again at 2am, 4 am, 5am, 6:30 am, then again at 7:15 am when she decided to get up for the day.
As I said before, sleep is a luxury for me. It is also one of the many reasons I say you need a support system and even if that is just respite care use it. While it may be expensive, depending on the facility, it can be vital for your own health and sanity.
Another example of why constant supervision is important. We had a recent incident. It has been several long nights of very little sleep for me. I chose to go back to bed for a little bit once she was awake. I had made her coffee and got her all settled in. Usually the mornings are the best times for her cognitively. I awoke a short time later to the sound of water running. It sounded like my mother was trying to take a shower.
This is a normal activity for most people. For my mother this is a real chore that involves a significant fall risk. I went downstairs and found water everywhere on the floor in the hallway.
The bathroom sink and the shower were running. The only dry thing in the room was amazingly enough, my mother. She was standing naked in the walk-in shower with a mountain of towels and clothing. I asked her what she was doing, and she responded, “I’m doing the laundry.” I dried up with floor with the least damp towels I could find. Grabbed one of the few dry outfits she had left. I got her dressed and cleaned up the mess which required me to rewash all her clothing.
Just to be clear I don’t have any partnerships or sponsorship deals with anyone. That said if you are interested in the wireless door chime system I use you can find it here.