For those who care for someone with Parkinson's disease
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Flipping the script a little from the "Vacations" post, but I feel like this is two faces of the same coin. Can you guys verify? Does your partner have trouble when visitors come and stay for long? How about family members that come to stay with you in your house for several days? Those of you who know me already know my story from last Christmas, but I heard recently that all the kids are again planning to come here for the holiday. And this time, they've had ANOTHER baby so there are FIVE children, with three of them under the age of five. Am I the only one who sees their spouse absolutely destroyed with stress and regression when visitors come to stay? |
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I think we would have the same situation. We had wonderful family from the UK who came to visit and rented a small cottage on the water 10 minutes from us. We had the joy of their visit and the peace of their going home, going on outings without us --not having to have every meal with them, not having them sharing bathrooms etc. Can you say no? Perhaps find an Air BnB. Ask your PWP's doctor to recommend that he not have major disruptions in the house and, if you can easily, fund or share int he funding of the air bnb. Perhaps " Wow! We are so glad that you are coming. Too bad that Dad's doctor says he can't have such big changes. I found some Air bnb rentals -- but here is the link if you want to choose for yourselves." |
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| Violet...that's genius! Last time it was so much chaos that we swore we would never, ever have company again. Many bad feelings at the end of that one, and about a month of trying to get rebalanced. I'm trying to avoid disaster without making anyone feel like we don't want to see them. |
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Michelle, I feel for you. Just recently, I told my sister in law NOT to come for a visit! They would be bringing the two adults, three kids (ages 17, 19, 22), and my nephew who is 13 and is severely handicapped with cerebral palsy! I flat out said, "We just cannot handle the rush of company right now. Between the PD and having cataract surgeries (both of us), the heat here would make it unbearable. I know you mean well, but now is NOT a good time for US." What I didn't say was that all the extra food preparation, cleaning, etc. the last time they came was pretty unbearable...she is a great love, but does NOTHING when she is around us! And, this time, I decided that *I* wasn't going to be able (or willing) to add the extra stress to our lives. Sometimes you have to be blunt with some people. I respect anyone's opinion who has a more polite way of handling family, but in our case, just saying it outright was less painful than anything! I would never completely say, "No, don't ever come." And hurt their feelings, but, with PD, sometimes honesty is best. That said, guess who just booked a five bedroom house in Anaheim for a family trip to Disneyland in September? I DID tell 'the kids" and grandkids that I got one with a pool, so if Grandpa gets tired, we can go back to rest. I also simply TOLD our "kids" not to expect us to do everything...I made sure there was a gas bbq grill for our son to cook, etc...again, telling them the truth upfront seems to work..they are planning meals, etc. already! Hooray! |
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Tell them to get a room! And one that serves breakfast. They are adults, they should be able to figure that out. You are not in a position to run a bed and breakfast for the family. When I had my husband's birthday party, I paid for the motel for the kids and grandkids myself, because that was a special occasion. |
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As much as we enjoy seeing other people visit us, I find if people stay over 2 hrs it wears my husband out. It is so hard for extended family to understand this illness. Sometimes I will even say to my husband, "you are getting tired, aren't you?". Sometimes company picks up on it and sometimes they don't. Our family has holiday barbques with around 50 people getting together. My husband still likes to go to see everyone but it takes him a week or more to recover. He just can't handle any extra stimulation. So you aren't alone.....nothing is normal for us anymore. Still trusting! Blessings to you. |
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YES. And you guys are absolutely right...I've always struggled against being a pushover. I need to stand up and advocate for him. Thanks for helping me find my backbone. 
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Our girls have been coming home about every month and they stay with us in the house as we have 2 extra bedrooms and a full bath downstairs. They want to be with their dad before he gets worse. It is more work for me, but our daughter got all the meals when she came home in the summer which was nice for me to have a break. When she came home for a weekend, I didn't know what to have so she looked up a recipe and got the groceries and made a meal for us. At Thanksgiving this year I got the turkey ready and my daughter helped with the vegetable and they helped to clean up and do the dishes, so I guess I'm lucky that way It is a little more work for me, doing the towels and bedding afterwards, but lately I just wash the bedding and they can put it on the bed when they come. Our granddaughter is 13 so she isn't noisy and spends a lot of the time in the basement watching Netflex. I think it does my husband good to have them around instead of just me around. It also gives me someone to talk to as he doesn't talk that much, so I feel a little better that way. He is always sad when they leave, but they always tell them they will be back in a month or so. He also sleeps a lot during the day, so he doesn't have to stay awake as they understand. |