In March of 2018, I began this blog with this goal in mind – “to support and encourage those who care for someone with Parkinson’s Disease.” And when you read the first post, “Similar, yet Different,” you will see that my focus was just that.
But as all things do, this blog has evolved. What most of us have in common is the caregiving piece of this blog. While the conditions of our loved ones may be very different, the similarities in the caregiving part are really what bring us together. They give us a shared mission; they bring us shared emotional experiences; they bind us together with shared joys.
No matter the disease, condition or ailments, our mission as caregivers is to take CARE of our loved one. They need physical care – sometimes only a little, and sometimes they are totally dependent on us for their needs. They need emotional care when they become discouraged due to their limitations or pain. They need us to care for them, no matter their symptoms.
And in this caring, there are many ups and downs emotionally. Some moments are just difficult as we watch our loved one’s disease progress. We watch them age and grow weaker. Some moments are joyful when they join us in appreciating the beautiful world around us. Some moments are filled with panic when we just don’t know how to help them or what to do. Caregiving can be an emotional roller coaster.
But we live for the moments of joy: seeing our loved one smile, hearing them recount experiences from the past, watching them respond to family and friends, hearing them tell a favorite joke. Those moments may be brief, so we hold them sacred in our hearts and bring them to mind when the times are difficult. Another is the joy of knowing we are doing our best, that we are doing the right thing, that we are doing God’s work here on earth by caring for our loved one. Let’s not forget that, especially when the moments are difficult or uncomfortable.
Your experience right now may be totally different from mine, but if you are caring for someone, we have so much in common. We understand each other. We can laugh through the difficult times because we know countless others are experiencing difficult times as well. And let’s celebrate the wonderful times and encourage each other with them.
Care for Parkinson's 
Really needed your positive look at life and caregiving this morning. This has probably been the worst week of caregiving in this whole journey. There is anger, selfishness, and stubbornness breaking through that is not characteristic.. I know I need to look at the disease as the cause, but it is very hard. I am being much better at writing down the events which I hope will add insight when I reread them. Keep your encouraging words coming, Cheryl.
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Oh, Pam, I totally understand. We know it must be terrifying to know that you are only going to get worse and that every bit of independence you had is leaving you. However, it makes it hard on us as caregivers. Sometimes I just don’t know how to respond. I’m so glad you’re writing things down. I hope it helps now as well as later. Thanks for commenting. I’m praying for you and Bill right now.
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Knowing that there is commonality in the world at this time speaks volumes, but finding it with caregivers is so very important. Our journey can feel very lonely and sad, so being reassured that there are others out there who understand is vital. I am thankful for you beyond words!
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And I am thankful that God brought us together on this journey. It does make this life easier, just knowing you understand. Thank you, my friend.
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Hugs… I have been there too.
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Joys… he can physically do things for a time before feeling bad or just tired.
Difficulties… when he doesn’t know who I am or filled with anger or anxiety for no apparent reason. The hallucinations are interesting and keeps me on my toes, but I find calmness when asking him questions about the person or people and he focuses and poof they disappear.
Blessings… he here and I get the pleasure to take care of him. I don’t know how long, but it is a gift everyday. Hugs to all the care partners!
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Oh, girl, I so identify with what you’re saying. Thanks for commenting. We have so much to be thankful for. Hugs right back.
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I identify with Pam. I thought I was doing so well at being patient, understanding, helpful, loving, etc. but the past two days I’ve been exceptionally tired from travel with him for our 50th anniversary (we went alone) and have been grumpy and irritable in his presence—I also scolded him for not being more understanding of what I’m going through, which I have maybe done only once in the many years he’s had Parkinson’s. Anyway, I feel ashamed of my attitude right now.
Thanks for allowing me to share my flaws with others who will understand.
Difficulties are when he is impatient and demanding or delusional. Joys are when he looks me in the eyes and says, “I love you so much” or when we share a memory about something that only the two of us experienced, such as the birth of our children and our honeymoon.
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Oh, Katherine, please give yourself grace. You’ve been through it while traveling. That is so difficult! We totally understand. I have thought this so often – “him not being more understanding of what I’m going through”. The truth is that the more they deteriorate, the less bandwidth they have to think about ANYTHING other than themselves. So we have to help each other, encourage each other. Our spouses will not ever realize how much we do for them. But we know, and we’re proud of you for hanging in there! Hugs to you!
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Caregiving is extremely rewarding and fulfilling. I took care of my grandma and then became a caregiver in assisted living for the elderly and have been working for over 10 years as a caregiver. It’s sad to see your loved one decline but it is rewarding and an honor to take care of them.
I have a special bond with the residents that I take care of at work. I love being able to take care of them, helping them through a tough time and being there for them.
Self care is important you can get warn out. Take care of yourself ❤️❤️❤️
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I’ve also taken care of a lot of Parkinson’s patients as well
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Thanks so much for your insight. Sounds like you have lots of experience!
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As always, Cheryl, you have touched my heart with your words. As you know, our situations are different from each other. But as you say, caregiving is caregiving and the similarities are there. With our Aaron, his autism affects his behaviors because he has such a hard time trying to control his surroundings. I love sharing his fun and funny moments, but the other is there as well. My understanding, and that of my husband, is so important. Anyway, I could go on and on but you know what I mean. My focus on the good times is so necessary. Thank you for being a part of that in my life. Love and blessings to you and your dear husband.
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Thanks for your comments, Patty. I am praying for you, your husband, and Aaron today. I am honored to be able to encourage you today. You do the same for me! God has blessed us both. Hugs to you today.
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Cheryl, I wanted you to know that I just referenced you and your blog in my recent post. Here’s the link: https://hesaidwhatks.blog/2020/07/02/magical-and-maddening/ Thank you again for your encouraging words!
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