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    • #17290
      Mary Beth Skylis

      When you’re a caregiver, it’s really easy to forget to take care of yourself. Our lives are often focused on the one(s) we love. And if we’re not careful, we might put our self-care practice on the back burner for too long.

      What are some ways you’ve learned to take care of yourself? Is it difficult to practice self-care as a caregiver? How might we find a way to give care to ourselves as well as to others?

    • #17629
      Corrie Trattner

      This is a very difficult question to answer because it depends what stage of Parkinson’s the person is in and also how many additional complicating and co-morbid conditions are continuing concurrently.  During the “crisis” times when things get worse, or suddenly much worse, it’s hard to do anything but care for the person with Parkinson’s.  During the “quiet or down times” it could be a bit easier, but I find myself often waiting for the “shoe” or “other shoe” to fall.  People often are helpful during the crisis times, but not necessarily available during the quieter times.  So, for me, I’d like information on how people deal with their anxiety, stress, and prolonged grief.

      Obviously, the above doesn’t answer the question.  I can share what I tend to do now, but it doesn’t eliminate the sadness; rather often these strategies are only a temporary distraction.  However, to be fair and to try to answer the question, this is what I’ve done successfully so far:

      1. Listen to a lot of books on tape.   2. Got into a writing group.   3.  Pray and go to services and spiritual-religious study groups   4. Attend Parkinson’s and caregiver’s support groups  5.  Attend dance class   6. If time and I’m up for it attend lectures (one night) or short (1-3 sessions) craft-art classes.   7. Watch a lot of TV and fall asleep on the couch   8. Keep in touch with family and friends as much as possible.  9. Continue to work full time which can be helpful and stressful depending on the day. (Husband is in assisted living).

      Again, this probably sounds good on paper, but my anxiety, sadness, and grief is pretty constant.  I really have to work at quieting those feelings.  If anyone has other and better suggestions, I’m all ears.

      A friend put it very well.  He said, “First I though we had to stay ahead of this.  Then it became just trying to keep up with it.  Lastly, it was it is what it is.”  I think of that a lot, which sometimes gives me some comfort.  Thanks so much, Jeff (person who made the statement).

      Hope this was helpful.





    • #17687
      Corrie Trattner

      HI MaryBeth,


      Thanks for your reply.  I definitely agree that getting out into nature would do much to reduce one’s anxiety.  However, as lovely as a two hour mindfulness walk sounds, I don’t think I’d be able to fit it in more than once a week if that.  Perhaps other’s have more flexible time to do so, which I agree, would be highly recommended.  I also agree that what we eat can help our mental as well as our physical health.  There definitely are foods that are comfort foods and those that help to alert the sensorium.  Would be good to talk to a knowledgeable dietician on this.

      Thanks for your suggestions.


    • #17690
      Mary Beth Skylis

      Thanks for your thoughts, Corrie. As far as I can tell, you don’t need to spend tons of time outside every day to reap the benefits. I, certainly, understand how the time commitment can be alot.

      It’s always interesting to see what things people find to be useful while combatting different challenges.

    • #17708
      Barb Bowen

      Pray for patience and peace (and it comes every time). Monthly massage (lifting a wheelchair in and out of the car takes a toll).  Dark chocolate with a glass of red wine to wind down in the evenings. Recognize when I’m too tired to deal with life and go to bed early. Drink water when I’m feeling fuzzy headed. Forgive myself for those times I snapped at my disabled husband because I’m only human. And apologize. And when he is standing up for any other reason, go get a hug. It’s hard to get a good hug with someone in a wheelchair. Foot rubs (he’s the best!).

      After getting my husband up, showered, dressed, with a brunch tray and able to remain in his recliner for a couple of hours …I put his medic alert bracelet on his wrist and go run errands. Usually go out to lunch, either by myself and read a book or with friends.  It’s important to be apart because even if you aren’t actively DOING anything for the person you are feeling “on call” all the time when you are home.

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