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Teling family members I am too tired to cope with extended stays and extra houseguests.
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newshen posted:
My husband and I have a blended family of 8 kids and 21 grandchildren,Wonderful, fun and totally exhausting. This holiday season, one daughter, spouse, and 5 of her 8 kids came for the thanksgiving holiday. Another came with 5 kids and spouse. ( we moved to the motel).They all pitch in and help but between getting ready and having all that extra energy in the house, ranging in age from 2-22, and a set of cousins who live nearby and spend the day...i cannot begin to tell you how tired I am. I have had PD for 12 years.I am at the stage of taking at least one fall a day. I have moments of freezing. I have told my husband how hard it is. He helps as much as is possible. this year we did do Thanksgiving dinner at another daughter's home but I still had 21 to feed the night before. One daughter said, after she left"did we tire you out?" They are not inconsiderate people. They are very kind. They adore their father who took care of their sick mother for 12 years . How can I get the message across to everyone that this PD is more tiring than they think and even though they are very willing to help, the prep time for company takes energy even if you have someone come clean the house. I cut back on the decorating, baking etc. Hope someone has an idea. I am tired and frustrated!
Newshen
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DUKE MEDICINE
Mark A Stacy, MD responded:
Hi, newshen
I am afraid you are moving out of my area of expertise for this one, but would talk with your husband about strategies for discussion. It may also be good to talk with your own children initially.

I hope some of our readers who understand the challenges of PD and the holidays will pitch in with some strategies and advice.
 
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worn1 responded:
Newshen I do not think you are going to like what I have to say. I am a blunt person.
First have you ever sat the family down and told them about Parkinson's and how it affects you? Second did you lie when asked did we tire you out by saying no or did you tell her the truth and explain about Parkinson's. I am assuming when you fed 21 people it was pot luck or family came over and prepared the meal. If not why not? Why are you staying in a motel and not the family? What preparation do you need to do for family. I have never cleaned the house just for family nor performed shopping for family not stayed in a motel for family to take over the house. During my time in the military any parties we threw during the holiday's sometimes we had over 75 people. It was pot luck and byob. And clean up at the end was a group effort.
I have family down from Wisconsin and my husbands family from MO. There are no special preparation. When they come down we either eat out or shop together and fix meals and clean up after themselves or the kids do the house work. My family sleeps on the floor if there are too many. They know the capacity of the house and house rules. They know they will be helping with every thing to include if we are painting, home repairs etc. They are family not guests. The same holds for us when we go to visit. by the way we all have disabilities. We were taught that you have each others back and help no questions or judgments when it comes to family.
What I have taken the long way around to tell you is you have to lay down the house rules what you can do and cannot due. If it is too much to have family stay with you or you need to limit the number of people visiting at one time do so. People can not read minds and usually do not have a problem with rules if they know why. In other words communicate. If you have tried tact and it did not work be blunt. Make sure your husband understands so he can back you up.
w
There are none so blind as those that will not see
 
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worn1 replied to Mark A Stacy, MD's response:
Happy New Year Dr Stacy!
Hate to tell you this but discussions do not work in this area. You just need to lay down the house rules. Make sure everyone understands and why. Forget tact no one listens. Blunt works. The person with PD needs to lay down the house rules not the care giver. The care giver needs to help enforce the house rules. We have no control over what is happening to our bodies but we still have control over what happens in our life. When a person has no say or control of their lives it leads to depression and suicide. I hope you understand what I am trying to tell you.
w
There are none so blind as those that will not see
 
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newshen replied to worn1's response:
Thanks- I know you felt like you were reading "Diary of a Wimpy kid":. I know what I have to do and one thing is the situation involves my husbands children,not mine as they do not visit as often. No problems in the family.They are scattered and busy.My new years resolution is to get some spine and stand up for myself( before fatigue takes over). Will keep you posted.
Newshen
 
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worn1 replied to newshen's response:
newshen I do not think you are a wimp. If that is how it came across I am Sorry. You were raised to put others before yourself. It is hard to change. Also I get the feeling you are afraid of upsetting your husbands children. I think when you sit down and have a heart to heart talk with them you will see that there will be no ill will. As long as your family and close friends understand about the disease and the havoc it plays on your body they will be more than happy to follow the house rules. You will need to explain that you are no longer the energizer bunny.. Parkinson does more than affect movement. it affects everything in your life. memory, sex drive, personality, sleep, you name it affects it.

I know it is hard to tell people no but for your health you need to. The person who had the hardest time accepting my diagnosis was my husband. He thought the pills would make everything ok and nothing would change.
I do have a suggestion. Gather up all the information on Parkinson's, write out a outline of what you want to discuss and make sure your husband is with you. he is your support person and will add anything you forget to cover..
I wish you luck and remember you only have this one life and the quality depends on how well you take care of yourself.

w
There are none so blind as those that will not see
 
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lovedogs1955 replied to worn1's response:
Boy, oh boy, can I relate to this problem! I agree with worn1 on what she suggests. You definitely MUST tell not only the family, but your friends as well. I have very poor physical endurance anymore, and make no bones about it when I am too pooped to do anything. Potlucks and going out work really well for us! I have made some suggestions for reading about PD to my family and friends, too, because there is just too much information to convey.
 
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An_249827 responded:
Learn to say no. It's hard at first but they will get the message if you are forthcoming and honest. Things change with any disease and they need to realize it before your accommodations kill you.


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