Take Good Care of Yourself, Caretakers.

Tonight is New Year’s Eve. We all know what that means: resolutions. While they may be a good idea and we may intend to keep them when we make them, I think we can accept that most of us don’t. So instead of resolutions, I have some recommendations for a special group of people.

I am a Chronic Kidney Disease patient, holding steady at stage 3 for the last decade. While you all know that, I’m not so sure that many of you know that I am also an Alzheimer’s care partner. That’s what the Alzheimer’s Association calls the more commonly used term ‘caretaker.’ I love my husband, but this is hard… harder than I’d expected it to be, even though I’d been a caretaker before.

For those of you not in this position, a caretaker is “one that gives physical or emotional care and support,” according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/caretaker.

The Alzheimer’s Association offered me quite a bit of advice about how to preserve my own health while being a care partner. Lori Hartwell’s Renal Support Network does, too. And then there are so many, many other organizations offering advice that always seems to be helpful. Now I offer it as recommendations to you, the care partners of your loved ones.

Why? The Family Caretaker Alliance at https://www.caregiver.org/taking-care-you-self-care-family-caregivers phrases the answer to this question so well:

“On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.”

I had trouble with this idea at first, thinking it selfish when it was my husband who needed help – not me. I was wrong. The Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784 explains why:

As a caregiver, you may be so focused on your loved one that you don’t realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:

  • Feeling overwhelmed or constantly worried
  • Feeling tired often
  • Getting too much sleep or not enough sleep
  • Gaining or losing weight
  • Becoming easily irritated or angry
  • Losing interest in activities you used to enjoy
  • Feeling sad
  • Having frequent headaches, bodily pain or other physical problems
  • Abusing alcohol or drugs, including prescription medications

Too much stress, especially over a long time, can harm your health. As a caregiver, you’re more likely to experience symptoms of depression or anxiety. In addition, you may not get enough sleep or physical activity, or eat a balanced diet — which increases your risk of medical problems, such as heart disease and diabetes.

Hmmm, that would explain the irritability and overeating, I suppose. But I had to do something about this or I’d be as large as my little house soon.

Let’s get back to Lori’s site for a minute. Dr. Michael Fisher guest blogged at https://www.rsnhope.org/rsn-blog/6-tips-to-survive-your-partners-kidney-disease-diagnosis/ and offered the following as one bit of advice:

Enlist friends and family to help you, or hire the help you need. Get a neighbor to drive the kids to and from school or enroll them in an after-school program for help with their homework; hire a housekeeper; negotiate flex-time or permission to work from home; and ask family members and friends to volunteer for regular assistance. This is an all-hands-on-deck occasion!”

He’s right. We now have a house cleaning service every other week, bottled water delivery, and a mobile vet. Decades ago when I was a caretaker for a different loved one and was in a pretty poor financial state, my friends and neighbors took my kids to school and after school activities. Family came on the weekends with marketing they’d done for us and to let me run down to the basement to do the laundry. While money makes it easier to have help, it’s not impossible to ask for help without money behind you.

U.S. News Health’s most important tip for caretakers is:

“If you’ve taken on the role of caregiver, the first thing to do is learn as much you can about your loved one’s disease or illness to know what to expectOtherwise, you’ll be driving blind.

Imagine getting in your car, turning on the ignition, closing your eyes and then driving. What do you think will happen? Before long, you’ll crash into something or someone, resulting in damage and even injuries.

The world’s roadways operate smoothly (most of the time) because drivers know what to expect and follow the rules. Likewise, caregivers who learn more about their care recipient’s disease will be more aware of the challenges that lie ahead.”

You can find them at https://health.usnews.com/health-news/patient-advice/articles/2015/05/01/the-2-most-important-caregiver-tips.

I always go for education first; I was a teacher for over 50 years. But sometimes that just isn’t enough. I know, I couldn’t believe it either when I first realized that. So?  I started listening to the advice about how to take care of my emotions while care partnering. VeryWell Mind at https://www.verywellmind.com/caregiver-support-caregivers-and-stress-relief-3144520 offered the best recommendation for me:

“It may be difficult for you to find time alone, especially if you’re the sole provider of care, but don’t forget that you need to give to yourself in order to have the ability to give to others. However, taking an hour or two for journaling in a coffee shop, seeing a movie by yourself, getting exercise with a long walk, or going to a nearby park and immersing yourself in a good book are all excellent, restorative options that can help you to stave off burnout.”

I found I craved silence… or just listening to the birds or the horses that lived behind my house. When I could leave my husband alone and couldn’t get the silence I needed while being at home, I took off to a coffee shop with my Kindle. It helped. Hopefully these recommendations will help the caretakers among you.

Have a happy and safe New Year’s Eve.

Until next year,

Keep living your life!

Something New and Entirely Different

I sit here trying to write this week’s blog and being interrupted every five minutes by a long involved commentary about one thing or another. Why do I tolerate it? Because it’s Bear, my Bear, my husband who is interrupting. Why not just ask him not to, you say. Well, it’s involved. Basically, it’s because he has Alzheimer’s, doesn’t know how long winded he’s being, and feels terribly insulted when I ask him not to interrupt so I can write.

Sometimes, we can have a conversation without the interruptions and without the involved commentary. Obviously, not right now, but during one of these conversations, I explained to him that I had been asked to write about his Alzheimer’s but felt I needed to preserve his privacy. This good man blew that up. He said something to the effect that if it’s going to help even one person to know what he experiences, what I experience, with this disease, then I was obliged to write about it. His privacy wasn’t more important than that.

Now you have just an inkling of why I love him… and I do, Alzheimer’s or not. Since this is my kidney disease blog, it would make sense to look for any connections between Alzheimer’s and kidney disease. If they exist, that is.

I was not happy to find the following on The National Kidney Foundation’s page at https://www.kidney.org/news/ekidney/august08/Dementia_august08

“People with albuminuria were about 50% more likely to have dementia than people without albuminuria, Dr. Joshua I. Barzilay, at Emory University School of Medicine in Atlanta, Georgia, and his research team report. The association between the two conditions was still strong after controlling for age, education and risk factors, such as high blood pressure, diabetes, smoking, and cholesterol levels. There was a weaker relationship between albuminuria and mild cognitive impairment.”

By now it’s common knowledge to my readers that diabetes is the foremost cause of Chronic Kidney Disease with high blood pressure (hypertension) being the second.

How about some reminders right about now?

The American Diabetes Association at http://www.diabetes.org/diabetes-basics/common-terms/?loc defines the most common type of diabetes in the following manner:

“diabetes mellitus (MELL-ih-tus)
a condition characterized by hyperglycemia resulting from the body’s inability to use blood glucose for energy. In Type 1 diabetes, the pancreas no longer makes insulin and therefore blood glucose cannot enter the cells to be used for energy. In Type 2 diabetes, either the pancreas does not make enough insulin or the body is unable to use insulin correctly.”

As for high blood pressure, also known as hypertension, The National Library of Medicine PubMed Health was able to help us out:

“It happens when the force of the blood pumping through your arteries is too strong. When your heart beats, it pushes blood through your arteries to the rest of your body. When the blood pushes harder against the walls of your arteries, your blood pressure goes up.”

Keep this in mind for later. Here’s the definition of albumin from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

Albumin: Water soluble protein in the blood.

As mentioned in SlowItDownCKD 2013, “according to the physicians’ journal BMJ: ‘albuminuria [is] leakage of large amounts of the protein albumin into the urine.’”

Many of us with CKD have albuminuria at one time or another. Does that mean that 50% of us are going to develop dementia? No, not at all. According to the National Kidney Foundation, that 50% of us with albuminuria are MORE LIKELY to develop dementia, not GOING TO.

I get it. By now, most of you are probably asking what Alzheimer’s has to do with dementia. I popped right over to the Alzheimer’s Association’s (my new best friend) website at https://www.alz.org/alzheimers-dementia/what-is-alzheimers  for an explanation.

“Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.”

I’ll bet you want a definition of dementia now. Let’s go to Healthline.com at https://www.healthline.com/health/dementia for one:

“Dementia is a decline in cognitive function. To be considered dementia, mental impairment must affect at least two brain functions. Dementia may affect:

  • memory
  • thinking
  • language
  • judgment
  • behavior”

It’s not surprising that the two definitions look so much alike. Alzheimer’s is one of the ten kinds of dementia that I know about. Different websites have different numbers for how many different kinds of dementia there are. I used the information from MedicineNet at https://www.medicinenet.com/dementia/article.htm#what_are_alzheimers_vascular_and_frontotemporal_dementia

Did you keep the definition of albumin in mind? The key word in that is protein… and that’s where the connection between Alzheimer’s and CKD lies. The information is from an unusual source for me to use, Science Magazine at https://www.sciencemag.org/news/2018/01/alzheimer-s-protein-may-spread-infection-human-brain-scans-suggest:

 “Tau is one of two proteins—along with β-amyloid—that form unusual clumps in the brains of people with Alzheimer’s disease. Scientists have long debated which is most important to the condition and, thus, the best target for intervention. Tau deposits are found inside neurons, where they are thought to inhibit or kill them, whereas β-amyloid forms plaques outside brain cells.”

I realize this is getting very technical and may concentrate on particular elements of this connection in future blogs, but right now, I’d like to remind you that the National Kidney Fund is hosting a webinar “Eating healthy with diabetes and kidney disease” in recognition of National Diabetes Awareness Month on Wednesday, November 28, 2018 from 1:00 – 2:00 p.m. EST.

Again, diabetes… the number one cause of Chronic Kidney Disease. Read more about CKD, diabetes, and hypertension (as well as many other topics) in the SlowItDownCKD series and What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. All eight books are available in print and digital on Amazon.com and B & N.com.

Did you know that the first day of Chanukah is December 3rd? We start celebrating Chanukah the night before the first day and celebrate for eight nights… and there are eight books. What a coincidence! (Just planting a seed here, folks.)

Until next week,

Keep living your life!