From childhood we have learned that some things are absolutely important to do every day. Right? Like brushing your teeth every night before bed. Like making your bed when you get up. Like going to the dentist every 6 months for a cleaning. Like eating healthy food.
And none of us would want to trivialize any of those good habits. They have been ingrained in us for our entire lives! Let’s give thanks for those who taught us those healthy daily habits.
However
There may come a time in our lives when these are less important. We may find that happiness, contentment, enjoyment, and even just calmness are more important. Here is what I mean.
Many Parkinson’s patients experience a cognitive decline as the disease progresses, and as their ability to reason decreases, their tendency to desire healthy living may also decrease. Obviously, this includes those without Parkinson’s who exhibit signs of dementia or Alzheimer’s Disease as well.
With this cognitive decline comes a lack of ability to reason or choose wisely. Sadly, this means that caregivers like us begin to move into a role that resembles a parent, and many times we are accused of nagging.
We have now entered the stage of the disease where we must decide which habits we can just “let go.” About 6 months before Carlton passed away, he was under Hospice care, not walking on his own, barely standing to be transferred, very weak and down about 60 pounds from his normal weight. But he said to me one morning, “When is my next dentist appointment? It’s about time for a cleaning, isn’t it?”
Well, yes it was past time. But I had canceled the appointment because he was so weak. He could never have held open his mouth long enough to have his teeth clean, and the effort it would take just to get him there would not have been worth the benefit. (I did not convey any of that to him, however.)
I made up a story, telling him the appointment was several months ahead due to rescheduling. It was easier to NOT tell him that we were just going to let that healthy habit go. But I made that decision unilaterally.
Other caregivers have expressed to me that they have done similarly with actual trips that had been planned. But near the time of departure, they had realized that the time for that type of thing had passed. Staying home was not only easier but best for everyone involved.
At one point during our 18-month Hospice time, our sweet nurse told me to let Carlton have anything he wanted to eat and drink. I had been constantly telling him to not drink sweet tea, but instead drink water. She told me that prodding him to eat or drink one thing or another wasn’t going to add days to his life. And it was annoying him. This reminds me of something Carlton used to say often.
My point today is that there are some things we must let go of in favor of peace, calm, and contentment. Like going to the dentist for a check-up when he/she is in late-stage Parkinson’s. That is not necessary. Like making yourselves go on an extended trip when you know it will be more work than pleasure.
When it is time for us to make these decisions, let’s pray for wisdom, let’s seek advice from other caregivers and family, and let’s be decisive, never looking back. “Let it go!”
Blessings on you and your family today. Thank you for reading and commenting!
P.S. Book update – I have signed the contract with the publisher, and I’m waiting for the first round of edits to begin. This is so exciting! What do you think of this title- “Parkinson’s Caregivers – Yes, there is HOPE!”
Such a great post! This is something I need to realize and practice. Letting things go is not in my basic nature, but we’re now dealing with a different reality. Thanks for this nugget of wisdom!
LikeLiked by 1 person
We all need to practice it – maybe in different ways, but it definitely applies to many situations. You are certainly welcome, dear friend.
LikeLike
You think of everything when you write about caregiving. It’s so helpful! I remember when my dad was on Hospice and he kept after us to make him an eye exam appointment. He said he wasn’t seeing well. My mother made the appointment just to give him peace but of course he never got to keep it. I’m so excited about your book, Cheryl!
LikeLiked by 1 person
Thanks, Patty, for reading and showing us how many things we have in common as caregivers. Thanks for your encouragement along the way. God brought us together by technology!
LikeLiked by 1 person
And that’s one of the rare reasons I love technology! 😍
LikeLiked by 1 person
Such practical advice! Your book is going to be such a blessing, Cheryl. When those edits come in you don’t have to do them all if it alters what you are trying to say/convey. This is such an exciting time for you!
LikeLiked by 1 person
Thank you, my friend. I have been praying for you. Thanks for the encouragement.
LikeLiked by 1 person
Yes there is Hope!
LikeLiked by 1 person
Some days it is more difficult to see, but that’s what friends are for – to remind us of HOPE when we cannot see it. You’re doing a great job, my friend. Keep on keeping on!
LikeLike
Great title!
LikeLiked by 1 person
Thanks, Pam. Thanks for reading and commenting as well.
LikeLike
Perfect title for your book. Your post reminds me of my life with my hubby. I ask myself, “What battle do I feel is more important than my husband’s peace and will?” Then I sing “Let it go” from Frozen so often. It helps to get through high stress times. hahaha Thank you for your words and wisdom. Hugs!
LikeLiked by 1 person
Thank you, my friend. Yes, peace at home is so important. And it does help with the stress. Thanks for reading and commenting!
LikeLike
I like the title, but I think it might limit your readers with Parkinson being the first word.
Maybe “For All Caregivers, Yes There Is Hope!” by Cheryl Hughes: Parkinson caregiver for ____ years.
LikeLiked by 1 person
Great idea, Tootie. I am praying for you daily, dear friend. Please let me know how I can help.
Hugs
LikeLike
Yea, Cheryl!Congrats on the publisher news! That is huge!
This blog could be taken as advice to the reader, an ol’Type A gal. Just let it go! I like that! I’ll remember this one.
LikeLiked by 1 person
Oh, sweet Mary, I have been praying for you every day as well. I know you have had to let so many things go, hopefully for a season, especially #404. Check your email soon!
LikeLike
Cheryl, I like the title of your book! I am mulling over your thoughts about “letting things go”.
Steve is bouncing back some (yet again) after loosing weight and barely being able to use the toilet. He also can shower now if I’m there to help him so even though he’s under home hospice care I decided to renew to his doctors’ appointments with the caveat that we would do virtual appointments whenever possible. So far we’ve had three because those doctors are farthest away and don’t need to be “hands on”.
He’s been getting eye injections for diabetic retinopathy and HATES those injections so maybe it’s time to consider letting those go. Much prayer needed about that since all he does to occupy his time is watch TV. Therefore, he needs to preserve his eyesight.
I’d like to see you explore the roller coaster experiences of being a caregiver to someone with Parkinson’s. I can’t count the times that Steve has seemed to be spiraling downward only to rebound in a huge way. For instance, he’s been in and out of a wheelchair at least three times over the past several years. The toll this has taken on my emotions has been huge.
Now it’s happening again. Just a month ago my children and I were to the point of planning Steve’s funeral and he easily qualified for home hospice care. But , now he’s back to hobbling around some when I leave the room and his appetite has returned in a big way. He even called some friends to invite them for a visit next week. I don’t know whether to feel relief or disappointment.
Thanks for understanding and for sending out your blog.
LikeLike
OH, dear friend, I can so identify. Yes, roller coaster Parkinson’s will be the topic in 2 weeks. The sad thing is the toll it takes on ALL of our emotions. Perhaps this is another thing to just let go? I used to say to take one day at a time, but honestly, with many degenerative diseases it becomes “ONE MOMENT AT A TIME!” You are in my prayers, dear friend.
LikeLike
Cheryl, I like the title of your book! I am mulling over your thoughts about “letting things go”.
Steve is bouncing back some (yet again) after loosing weight and barely being able to use the toilet. He also can shower now if I’m there to help him so even though he’s under home hospice care I decided to renew to his doctors’ appointments with the caveat that we would do virtual appointments whenever possible. So far we’ve had three because those doctors are farthest away and don’t need to be “hands on”.
He’s been getting eye injections for diabetic retinopathy and HATES those injections so maybe it’s time to consider letting those go. Much prayer needed about that since all he does to occupy his time is watch TV. Therefore, he needs to preserve his eyesight.
I’d like to see you explore the roller coaster experiences of being a caregiver to someone with Parkinson’s. I can’t count the times that Steve has seemed to be spiraling downward only to rebound in a huge way. For instance, he’s been in and out of a wheelchair at least three times over the past several years. The toll this has taken on my emotions has been huge.
Now it’s happening again. Just a month ago my children and I were to the point of planning Steve’s funeral and he easily qualified for home hospice care. But , now he’s back to hobbling around some when I leave the room and his appetite has returned in a big way. He even called some friends to invite them for a visit next week. I don’t know whether to feel relief or disappointment.
Thanks for understanding and for sending out your blog.
LikeLike
Great advice Cheryl!! Love the name of your book, congrats on your steps forward in the book process!
LikeLiked by 1 person
Thank you, my friend. Good to hear from you.
LikeLike