I just got back from a visit with Barry at his care center. I try hard to get there each day. It used to be that when I was there, I couldn’t wait to leave. And when I wasn’t there, I couldn’t wait to get there to see if he was okay. I am pretty sure most people in my situation have felt the same way.

At first, I hated the smell in the place and I kept my head down as I raced to his room. Early on, I was so thankful he had a place live that I didn’t speak up much or ask questions. I would get to his room and sit, sometimes gagging from the smell. I hated going there and found myself becoming bitter and crabby! I realized that if I didn’t change my attitude, I would be of no help to Barry or myself.

What I have learned
food for thought
But it’s been over year now and his care center is no longer a dreaded place that I have to visit each day. I wish to God he was not there, but here are a few things I have learned:

Barry is my husband — granted a stranger from the old Barry. He is to be loved and cared for. Everyone deserves that! Once I accepted this, it became much easier to visit.

I have learned to get used to the smell. The staff work hard to keep the place clean, but it is what it is — people wear diapers and sometimes they smell. When Barry gets changed, I ask the nurse to spray his room after. They have some cool stuff that really masks the odors. I also have had to remind myself that I am a grown up (at age 61) and not a wimp or a kid with a weak stomach.

Get to know people and ask questions

I have learned to speak up! If Barry is wet or seems uncomfortable, I ask for help. If he seems really agitated, I tell the nurse to give him something to help relax him. The staff at the care center never resist helping him at any time, and it gets easier for me to ask the more I get to know everyone. I have learned that a care center can be a very interesting place if you take time to notice!

When I started to look around and got to know people, it became more fun to visit. I stop and greet one lady every day even though our conversation is always the same. I say, “Hello.” She says, “You are here every day.” I say, “Yes, I am.” She says, “Who do you see?” I say, “My husband.” And she always says, “Oh, you are so young.”

I also greet the gal who sometimes wears Barry’s shirts. When I get to Barry’s floor, I say the same thing to the TV crowd: “The gangs all here!” I get a few smiles. Then one guy always reports on what Barry has been up too when I am not there, which is always good to know. I have seen a few romances bloom. I have noticed rooms that are suddenly empty. I am amazed that a 100-year-old woman always remembers my name!

I have learned mealtime can be quite entertaining. I still can’t bear to eat the food, but it is fun to visit with the aides who feed the residents. Conversations with Barry can be a bit odd especially when he repeats everything he hears around him, including some song lyrics he picks up from the CD playing. I also noticed when I last fed Barry that I didn’t feed him what I personally don’t like, such as the brussels sprouts he had on his plate last week.

I have learned to ask questions about all the paperwork I get from the state and the care center. I used to be nervous and upset when I didn’t understand something I got in the mail. Now I just bring it to the business manager and ask whether I should be worried. She always takes time to explain everything — all I had to do was ask.

I didn’t expect to be doing this at my age. But it’s what we have on our plate, so I am trying really hard to figure out a way to find joy in each day. I have to admit that I kind of like the person I am becoming with all I have learned. But it’s sad because I can’t share it with the person who has helped me learn it.

21 comments on “HOW TO SURVIVE A VISIT.
  1. Gail Fury says:

    You ARE sharing it all with the person who helped you learn it! Just by being there. If Barry could say
    ” I love you Nancy” I know he would.

  2. Karen says:

    Just as Gail said, you are helping Barry, and you are helping all of us, too. Thank you! Maybe there’s an idea for another one of your fabulous books… Learning to ask questions!

  3. Gladys Mercier says:

    In the year Barry has been in the care center you have grown so much. Meredith worked in a nursing as an admission director before going to nursing school. She loved visiting with all the people. IThe care givers are such a gift! They seem to really enjoy their work. I know the staff would like to change their clients more frequently. Sadly these centers are usually understaffed.hugs,

  4. Sally says:

    I read all about your visits with Barry, and you are doing so well, learning the system and getting to know his routine, but I’m sure that it is hard. Hard to come and hard to go again. There are some special people who work at these places though, aren’t there? Dad had a favorite care attendant (who’s father also had Parkinson’s, so she knew what dad was going through better than we did). I was thankful that I got to know her, because she worked the night-shift, when dad would be up and around, looking for someone to talk with him usually, when most everyone else was sleeping. I was thankful once when she told me that she had walked by dad’s room and he was sitting on his bed praying. She asked him what he was praying about, and he told her that he was praying that there would be a cure, for all the other people who might have to deal with Parkinson’s disease. That was one of the moments when he was aware of what was going on, and I was so touched that she told me this, as I don’t think that he would have remembered or thought it important, but I did. Keep on visiting… and know that you’re making a difference for Barry each time that you do. Hugs.

  5. Elizabeth Burke Moeller says:

    I have no words of wisdom for what you’re going through other than I can help you navigate into a Brussels sprout adventure. I can’t guarantee that you will be like me and say, “Holy cow, what took me so long to like these wee cabbages?!” but I’ll tell you my secret and you can try it.

    Turn your oven on to 500 degrees, cut the little buggers in halves or quarters (smaller ones helped me initially) on a baking sheet, drizzle whatever oil trips your trigger (mine is coconut or avocado) over them, use your hands to mix ’em all up in the oil, season with your favorite seasoning (or salt, pepper, garlic) put in oven for 15-20 minutes (depends if you want them really soft or not). They’ll be browned on the edges. Probably a good idea to test them every 5 minutes after 15 minutes to see when your brain says, “Hey! That’s not half bad.”

    So that’s how I learned to like Brussels sprouts. Now I can even eat them boiled, with butter, but they’re not as good as roasted. Good luck! May the force be with you.

  6. Beth-Ann Bloom says:

    I worked in a nursing home all through college. It was a fascinating place to learn about life. A little vanilla on your wrists on the way in will make everything smell better!

  7. Ann hustad says:

    oh your sweet words have touched my heart nancy.. Sending love

  8. Shannon Samuels says:

    Well, you may not be able to share it with Barry, Nancy, but you are sharing with so many others ~ and oh, what a gift you are giving us. xoxo

  9. Diana says:

    Nancy, you are amazing, Barry is so lucky to have you.

  10. Lourdes says:

    Just want to let you know that I’m thinking of you and wishing you nothing but great things in your life. I have no advice to offer but well wishes to you and your family. You’ve left a lasting legacy with your wonderful books that taught my son how to deal with the world. Please know that you have admirers who care about you and are here to listen whenever you need to share something. Take care.

  11. claudine coughlin says:

    Dear Nancy, I love the way you share your experiences with all of us. Its hard to walk this road, but you seem to be doing it with a positive attitude. Take care of yourself and remember to enjoy the Barry you now have. Its hard! Love, Claudine

  12. Judy Peterson says:

    You have been amazing through all of this. We all have fears about our health and getting older and we all hope we have someone who cares about us as you do Barry! Stay strong my friend!

  13. Lisa Ventura Olson says:

    I’m sure that Barry feels your presence even if he doesn’t acknowledge you. Just keep on putting one foot in front of the other, Nancy. Sending love & prayers

  14. Karolyn Lee says:

    Thank you for sharing with us your utmost feelings. You are the bravest friend I have ever the privilege to know. Know you are in my thoughts and prayers every day!

    • Diane Thompson says:

      Barry is so lucky to have you and I know that despite his handicap, you feel lucky to have him. God bless

  15. Eunice says:

    Once again, Nancy, I appreciate so much your word expression ability. I hope someday a book will come out of this experience. You could just publish all the “one foot in front of the other” posts and that would make for great reading. Thanks for sharing!

  16. Nancy Higgins says:

    You are handling everything very gracefully. Accepting & loving your husband as he is at the moment is the best attitude. Yes – ask questions & continue to advocate for your husband.

    I love your books. Someone introduced me to them when my children were young. I enjoy drawing when I have the time, but I often feel too tired at the end of a day. I work in a nursing home, on the memory care unit, I’m the one who tries to bring some quality of living to the residents lives, I’m the therapeutic recreation coordinator.

    You are doing your best. That is all you can do. Keep making those great books. You may even want to share your books with the residents. Your use of color is wonderful – it would be a gift you can share. I’m 64 & still enjoy looking at & reading children’s books (and I don’t even have any grandchildren!).

  17. Much wisdom in what you say–hang in there

Leave a Reply

Your email address will not be published. Required fields are marked *