Grandparenting with Parkinson’s Disease, Part 2

In my last column I shared about grandparenting with Parkinson’s disease. Today I will give you concrete ways to have a blast with your grandkids (or young kids) without losing your mind or your strength because of Parkinson’s.

Children love to bake and cook. Make or find an apron they can get messy and make cookies. This is one activity all my grandchildren have loved doing with me and their grandpa. It will be messy, but what’s more important – a clean kitchen or fresh baked cookies made with your grandchild?

Children love to garden. Have some child-size garden tools available for your little helper. You may as well get the normal size because they’re going to want to use yours anyhow! A hand shovel, a small watering can, and a short rake (the small, plastic leaf rakes for hard to reach places are good child-size rakes) are good for starters. My grandson uses every tool I use, so be ready to teach and supervise.

Kids love art projects. I have a child-size art easel I purchased at IKEA for $15 a few years ago. It is the perfect size and has lasted outside on the deck for over eight years. Use fingerprint paint and then you don’t have to worry about staining clothes. Use the kitchen apron for added protection.

Make the Dollar Store and thrift shops your new best friends. Crayons, silly string, construction paper, sidewalk chalk, and other crafty items await you at a bargain price.

I have gotten small pom-poms and small square foam pieces at the Dollar Store (DS) and they have lasted two years for make-do snowball type wars inside the house8. They’ve become the rocks for the dump truck and more. Total cost: $2.

My grandson loves to play with balls. A bag of balloons are great make-do volleyballs for inside the house. He also loves silly string and surprisingly it’s not a pain to clean up. That, however, is for outside.

Every kid loves sandboxes but so do cats. I put a small, round (about 36” diameter) black plastic pond form I bought at the neighborhood garden shop on the back deck (where the sand stays dry) for a sandbox. Before my grandson goes home, we pile all the outside toys in it and then there’s no room for cats.

I bought a roll of brown grocery type paper at the DS and unrolled it flat onto deck. I took an old cookie tray (you could use throw away foil ones), put different colors of finger paint in it and placed it at one end of the paper and let him put his bare feet in it and decorate the paper. Part of it we framed as a gift for mom and dad and the rest we let mom use for wrapping paper.

Look for other grandmas who watch their grandchildren and meet them at the park one day. The mall playgrounds, indoor play areas, parks and more are good places to meet new friends for the both of you. Malls are also good places to take the little one to walk early in the morning before the crowds begin.

If you’ve got cleaning to do, why not let the kids help? While I cleaned the toilet one day, I gave my grandson a plastic spray bottle with water in it and a sponge and sitting inside of it, he ‘cleaned’ the tub.

There’s so many other things you could do that are easier on you than others, but these are a few suggestions you might try. Also, some things to keep in mind if you know you’re going to have a child over for the day:
– don’t use up your energy today if you know you’ll be watching them tomorrow. They are most important so learn to leave the housework. It will still be there. They may not be, and for sure they won’t stay little very long.
– carry your phone everywhere when they are with you (and when they aren’t) in case you need help. I called my husband last summer to come get us from the park down the street because I knew I wasn’t going to make it home.

Do you have any suggestions on grandparenting with Parkinson’s disease you might share?

Grandparenting with Parkinson’s Disease

You’re going to be blessed with your first grandchild. The news brings joy to your heart and puts a spring in your step. Until you begin to re-evaluate… You have Parkinson’s disease. Will you prove to be of no use? Will you be a burden? A bother? Just in the way or somewhat of an asset? Can you be a help to your children on their new adventure – your grand, new adventure? What can you expect?

I became ‘Grammy’ when my first grandchild, a beautiful little girl, was born. It was four years after I was diagnosed with Parkinson’s disease.

I was in a fairly good place physically. I was slower, but still capable of walking on my own and getting around. I was losing upper body strength but I began watching my granddaughter every day when she was six months old. Babies are born small and grow into big people not vice versa. So, while I watched my granddaughter and she grew, I noticed I was growing stronger in my upper body. My granddaughter had become my ‘home gym’.

I now have three grandchildren, the youngest a three year old who I watch every day. There are days, because of my health, when my grandson and I take “our” activities at a slower pace. There are days when I need a little extra time. That’s one blessing of being around smaller children. Everything fascinates them. They stop to notice things instead of hurrying by with an eagerness to get to their destination at a record pace. And, children bring a joy into our lives that nothing else can compare to, therefore, they are good in uplifting out souls and our spirits.

Now, let me say that my husband is unemployed, which has been a serious hardship on his desire to support his family financially. But often I look out the window and with tears silently filling my eyes, I give a prayer of thanksgiving for what God has done. He (God) knew my heart would yearn to watch my grandkids – all of them – if their parents needed to work. He (God) also knew, that in my present condition with Parkinson’s disease, I wouldn’t be able to do it day in and day out alone. He has given me my husband as my caregiver and he is an exceptional caregiver to me and helps tremendously in the care of his little grandson.

I have had to learn to make some changes, though, in order to be able to watch my grandkids. I have had to

  • let go of my pride
  • let others help me
  • recognize every single need has been filled month in and month out
  • let go of my OCD personality and let things wait until I have time to clean them or until I have the energy to do it.
  • realize some things are no longer as important as they once were – like housework.

What might you, as a grandparent with Parkinson’s disease, be able to do with your grandchildren? For those who are still able to get around independently, you know from having your own children that they love to go on walks and ‘explore’. Walking is one good exercise for grandparents with Parkinson’s disease. Play games with your grandchild as you walk, like “I spy…”, or pretending to fly, looking for ladybugs, naming colors of flowers and learning different flower types are all fun ways to spend a sunny day outside and they are easy on grandma and grandpa. On rainy days, you’ll find us jumping in puddles. (Make sure to keep a spare pair of rubber boots and rain coat at your house. Thrift stores are good places to look for spare rainwear.)

Check back in a couple days where in my next post I’ll give you some concrete ways to have fun with your little ones without losing your mind or your strength!

Caregivers: We wouldn’t make it without you…

Sitting in the neurologist’s office, my questions usually get answered, my fears often get calmed, my symptoms often are addressed. However, I sometimes wonder how my husband feels sitting there, listening in, adding his two cents worth. How does he feel about what he sees happening to me daily, what he might be missing, how he is coping, or going to cope?

Who asks questions of the caregiver? Where do they go to for support? Is there someone who can put their fears to rest? What should they (the caregiver) expect?

Because I’ve never seen an article address the subject much (although, I’m sure they’re out there), I thought I’d try. Since I am not the caregiver in my situation, I have researched some material to find some answers.

So, caregivers: What could be ahead on this journey with Parkinson’s for you?

You are in for some changes. Your loved one is going to be changing physically, emotionally, and mentally day by day. Because each case differs in how Parkinson’s disease or any chronic illness affects the patient, it is hard to say how much change will occur or how long it might take or last. This could very well cause fear, and understandably so.

You fear your spouse will no longer be that beauty or that hunk you once fell in love with and were attracted to. You no longer have those deep conversations you used to have. Their concentration level just isn’t there, and it’s frustrating you can no longer have talks like you used to under the stars. The cognitive issues that so often accompany Parkinson’s disease can be harder to handle than the physical changes. And so often, it may seem that the disease now outshines the person you once knew.

It’s OK to grieve because what you are experiencing is worth grieving over. Someone doesn’t have to have died to be dealing with grief. I grieved for years over my oldest son moving his family away in hopes of finding a better job so he could provide more for them. No one died, but the grief was (is) real. Your loved one may not be anywhere close to passing, but still, you grieve over the one you are slowly losing to a malicious disease.

When the disease is diagnosed, it can be confusing. A lot of misinformation can be floating around in cyberspace. It is best to get your information from a qualified source and to remember that each person wears PD differently. You may very well face family members and friends who don’t want to believe what is happening, and they will offer no help or support whatsoever. You may feel left alone to fight this battle. You may fear being alone to finish your life, a life that now looks so different from the one you and your loved one had dreamed of.

You may realize that the support just isn’t there. The support you expected or anticipated. Family and friends may stop calling or stopping by. They may not invite you to get-togethers as they once did. They may ignore you.

They just don’t understand. They can’t understand unless they walk the same path, or a very similar one.

It can be a pretty dismal place. But remember: Everybody’s situation is different. Everybody will respond to this disease differently, both as patient and caregiver.

What I wish to convey in this column is this: We couldn’t make it without you. I am sure it’s only going to get harder. And hard is hardly the word to describe a caregiver’s situation as they care for someone with Parkinson’s disease. But you chose, and still choose, to stay through the long haul even though you could have left and gone your own way.

I know of people whose spouse left when they were diagnosed with Parkinson’s disease. But you haven’t. You have chosen to hold tight to the promise you made at the altar or as a loyal friend. And we love you for it. And because we love you, please get some support for yourself. Don’t go this journey alone. Move closer to family if they can’t come to you. You do (and will) need each other.

And we, the needy patient, may get to a point where we can’t say it or show it, but we are so grateful and blessed to have you in our life, and we love you for all that you are: our caregivers.