Are you taking care of yourself?

It is a common misconception that thinking taking care of yourself means having a “me first” attitude, it isn’t, it means having a “me too” attitude.

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Everyone keeps asking me that question.  Are you taking care of yourself?  I am sure they all mean well but for the life of me I can not figure out exactly what they mean by that.  I ran across an article entitled A Helicopter Style of Alzheimer’s Caring which I will include her for context.  The premise is that we, as caregivers should not hover over our Loved One’s like parents do with their kids.

A Helicopter Style of Alzheimer’s Caring

By Nikki Nurse

Welcome to Caregiver – You are Doing Too Much 101. In today’s lesson, we are going to discuss the helicopter style of caring and the importance of taking breaks for self-care as you care for your LOWD (loved one with dementia). Alright class, let’s sharpen those pencils and get to work!

What is helicopter caring?

A helicopter style of caring comes from the term helicopter parenting which often refers to a style of parents who, like helicopters, hover and oversee every aspect of their child’s life.

Yup, overhead, oversee and overdo. I was an overly focused caregiver to my mom with Alzheimer’s and I was doing too much! In my own defense, I used this style of caring to prevent my mom from experiencing getting hurt, being misunderstood, and protecting her independence but all that attention was just a recipe for my own burnout.

Are you helicopter caring?

Yes, attention. That is the keyword especially when we are speaking about a helicopter-style of caring am I right? Well, it is also the key question that I would like to propose to you. How much attention do you give to yourself? How much attention do you give to your loved one?

If you are like me then, you are giving them A LOT – so much that it takes away from the attention you should give to yourself. This was the case for me. I made it incredibly difficult to prioritize any type of wellness in my life specific to my mental and physical health. My reasoning for justifying this? I was preserving as much normalcy for my mom as possible.

Why does helicopter caring happen?

As mom’s caregiver, I felt the enormous weight of keeping her busy, entertained, and mentally stimulated. Admittedly, I gave my mom all my attention to the point that I became a helicopter caregiver. I did not realize then that monitoring my mom’s everyday engagement and interaction, in a sense, was preventing me from being present to my own needs. But I love my mom and I wanted to give her purpose and hope after being diagnosed.

At the age of 58, my mom was living with early-onset Alzheimer’s and life became very different from the one she was accustomed to living. Never one to catch sitting down relaxing, my mom was on the go from before the sun came up to after the moon was shining bright in the sky. At the time, I admired this about her, her energy, her grind but I realized later on when I became her full-time caregiver that it may not have been the healthiest form of living.

How do we prevent overbearing care?

To be honest, the first step for me was to extend grace to myself for neglecting my needs. My second step, giving myself permission to prioritize my focus on my immediate needs, both mental and physical. Creating a wellness routine that I could easily practice daily; whether that was staying active every day or sitting with a book to read at night. It made a difference in the style of care for my mom.

Who knew that by making an effort to prioritize your own health, you create the space to rock out caring for others?

Ok class, did you get all that? I’m curious to learn what your style of caring is! How do you prioritize self-care practices for your life?

My thoughts on taking care of yourself

I am a firm believer in, “Do on to others as you would want them to do on to you.”  As Catherine’s caregiver/partner I would hope she would do the same for me.  When we embarked on this adventure that is coming up on 7 years, I had a choice to make.  Should I continue to work and have her fend for herself during the day or as I did, retire and be by her side 24/7.  As I say to her all the time where I go she goes and where she goes I go.

This has helped me to be more responsive to her ever changing needs.  The little nuances  that I would have missed while away at work 8-10 hours a day.  At the same time, what would she be doing during that time besides walking around the house trying to find one item after another that she misplaced.  Only for me to come home and put the house back together as she tore it up trying that find those items.

Since exercise is our passion and we both love to travel I have combined the two so that we can enjoy these activities as long as we can.  From time to time it is frustrating trying to figure out how to navigate the maze of Alzheimer’s but since I am truly a manager by heart it always intrigues me to try to figure out what is best for her and by extension, me.

I basically take care of myself by solving the puzzle of travel minute by minute.  What are the best flights to catch, hotels to stay at, restaurants to eat at and of course what races to run.  We both enjoy a good walk in a beautiful park and on top of that, they say, that is also good for her brain.

I did a podcast the other day and the gentleman pointed out that I actually use travel as a form of medicine.  I have often heard that movement is medicine so I will have to add travel to our medicine cabinet.  I probably have learned as much from each of these podcast interviews as their host and quests.  I have done over a dozen so far and have another half dozen on the schedule.  Catherine enjoys listening to me doing them.  So much so that you can hear her giggling in the background on one.

I also know that by taking care of myself I can be there for Catherine.  It turns out that over half the caregivers actually die before their loved one.  I don’t want to contribute to that statistic.  I don’t think much about that possibility since the more you think about something the more the likelihood it will happen. 

How is Catherine doing?

I am going to take a moment to talk some about how Catherine is doing.  I don’t do this very often but I hope this snapshot is useful to others traveling down this road with us.  I wrote another blog post called the road to recovery where I spoke about a supplement I started using about 18 months ago.

I have often talked about the importance of sleep for folks with ALZ and back then she was starting to have problems getting her normal 8-9 hours of sleep so she started to have delusions from time to time.  You can read that blog post here to bring you up to date.

All was well on the sleep front because of the supplement, Mind Restore by Alchemy and the delusions in turn went away and have not returned.  I sometimes refer to our health issues like whack a mole.  As soon as I figure out a solution to one another one raises its ugly head.  That is for both of us.  We are presently headed to the west coast for two half marathons, more about that later, but also to have my gut checked after an operation that was done several years ago to repair an aneurysm on my right iliac artery.

Well for Catherine she started to fidget quite a bit and twisting her fingers.  Unfortunately this is pretty common as folks with ALZ progress.  Working with the Integrated Mind Center folks in Atlanta we tried some different prescribed medications.  Over the years I have tried my best to keep her off actual medications and try my best to find a supplement for the solution.  It turns out that some of the hard core medications can actually accelerate the downward spiral.  It had gotten so bad that it was once again preventing her from sleeping which in turn would not allow the, “wash cycle”, as I call it, to take place in her brain.

During sleep if you are able to get into deep sleep the brain releases a fluid that helps remove accumulated toxin’s.  In her case Amyloid Plaques.   With her continuing to wake up several times a night that, “wash cycle”, can not take place.  Back to taking care of myself, it also prevented me from getting a good nights sleep.

As always, I researched for a solution, especially since she had a very bad reaction to one of the medications.  They say that the fidgets and twisting of the fingers is a reaction to stress and anxiety so I looked for an over the counter solution.  For the sleep solution I was able to find Sleep 3+ by Nature’s Bounty.  It is listed for stress support.  It has three benefits in one.  Benefit 1:  GABA helps support occasional stress.  Benefit 2: Quick release melatonin helps you fall asleep fast.  Benefit 3:  Time release melatonin works with your body’s natural sleep cycle to help you stay asleep.

We are now back to 8-9 hours of sleep for her and my usual 6-7 hours of sleep for me.  I don’t take it but do take 1, Mind Restore and a gummy 10mg of melatonin 30 minutes before bed time.  Since she is now getting to experience the, “Wash cycle”, of sleep her days are much better and we are basically back to where we were 6-8 months ago.  She is still very cooperative and with the cooler weather we have been out running or some other form of exercise just about every day.

With that said, occasionally the fidgets and twisting of the fingers do come back during the day and for that I give her Olly, Goodbye Stress Gummies.  It also has GABBA, L-Theanine and Lemon Balm.  They say it is to keep you calm and stay alert.  I give her one of the two recommended and the second one later in the day if they come back.

West Coast Swing

Right now we are headed to Portland for what I am calling the West Coast Swing.  We are to do the Columbia Gorge Half Marathon for the third time in 5 years.  That is highly unusual for us but you can’t beat the views along the course and the falls colors should be in full bloom.  They encourage dogs on the course and the first year we started behind the dog wave and Catherine was in heaven running ahead petting them while waiting for me.

We also have some friends, Kayna, Chris and Bob that have been on several Marathon Tours trips with us in the past who all live in Portland so it will be great to catch up with them.

The first part of the race went well as we climbed the 500 feet along the mountain on one side and the Columbia River on the other side.  The views and fall colors were spectacular but the rain Gods had their way with us on the way back down.

As the intensity of the rain increased the temperature continued to drop and we we were now soaked with about 2 miles to go.  Catherine was starting to experience mild hypothermia.  We ended up walking the last mile and that did not help matters.  We did manage to finish once again hand and hand and she snapped back pretty quickly after a few cups of well needed hot Apple Cider.

From there on to LA to catch up with our friend Wendy.  We will also have lunch with Susie and Dan with the Podcast Love Conquers ALZ, which I was a guest on several months ago.  I will also be doing a podcast interview from our hotel.  One of the things that is great about Podcasts are that I can be anywhere in the world or they can be.  I did one where the gentleman was in London and another one where the lady was in Paris.

Speaking of Podcast here is a link from Love Conquers ALZ, where they interviewed Elizabeth Miller, Certified Caregiver and Consultant on the topic of taking care of yourself as a caregiver.  She talks about how her writing is part of her own self care.  I also find writing to this blog and talking about our book helps me a lot.  I am able to express how I feel from time to time as opposed to keeping all those feelings bottled up.

After a scenic drive from LA to San Diego we  met up with my eldest son, Aaron and daughter in law, Kelsey.  They are thinking of taking to the road themselves in a RV some time in the next year or two.  He said he was inspired to my book, Running All Over The World, Our Race Against Early Onset Alzheimer’s.  It is never too late to get your Autographed copy or buy directly from Amazon, Barnes and Noble or Itunes.  Catherine and I really enjoy listening to the Audio Book version.

We were also able to get in a good slow 6 mile run in at Mission Beach and a 3 mile walk at Mission Regional Park.  Two of my favorite places to run and walk while in San Diego.  Unfortunately my right calf is giving me fits so I will have to take a few days off for it to heal prior to half marathon in New Mexico in a week.

Next stop Seattle for the gut check.  I brought along my doctor’s own personal Autographed copy of our book especially since she is mentioned by name in the book for the outstanding repair job she and her staff did.  However, I think I am going to find someone in Atlanta for the routine yearly checks from now on.

Back to LA for two days then on to New Mexico to once again meet up with my sister Gwen and my sister in law, Joan to do another half marathon, this time in Farmington New Mexico with Mainly Marathons.  This will be state number 41 for us in our goal to get a half marathon in all 50 states.  They are both going to do the 10K while there.  I think I might have them both hooked.  

The Farmington half marathon went really well as we ran along the Animas River on the Berg Park trail.  Little did I know that there was a War Memorial right across the river and we had to go back the next to visit the site.  I must say they did a great job of memorializing the sacrifices that were made over the years for our freedom.  On our way back to Albuquerque we had to stop at the Bisti/De-Na-Zin Wilderness Area to get a gander at a big hole in the earth.  It was about an hour out of the way but well worth it.

Back in Atlanta that will be stop number 650 still averaging 4 days per stop in almost 7 years.  Time flies when you are having fun and it hauls ass when you are retired.  Speaking of which my pious employer set aside just enough money to pay out for 5 years so now I am on the plus side of the actuary game.

During his 19 day trip we were able to meet up with 13 different people we knew from previous trips.  That is another way I take care of myself.  That and the fact that during this trip I did make a stop to get my gut aneurism repair checked out.

Back to the title of this blog post.  I think I might have figured out what people mean when they ask, if I am taking care of myself.  They are not actually offering to help out especially since we can’t seem to stay put for more than a few days but more of a reminder for me to also do what is good for myself.  I look as this disease as a team effort to hold it off for as long as possible.  I would love for Catherine to be in a position to be one day cured and as I say in the beginning of our book, she will have to be in relatively good mental shape to participate in that cure.

Doctor Dale E. Bredesen, MD protocol

In the mean time we will continue to do what we are doing as long as we can and enjoy ourselves as best we can along the way.  Back in 2015, after the failure of the Mindset Clinical Trial I entertained participating in a protocol established by Dale E. Bredesen, MD.  We did some of what was suggested but recently I ran across his second book called, The First Survivor’s of Alzheimer’s, How Patient Recovered Life and Hope in Their Own Words.  I could kick myself for not going all in with his protocol but I always try to learn from my mistakes and now plan on following it to a T.

First we had to have some extensive blood tests done where they took 15 tubes of blood.  I asked the folks at Quest Diagnostics what is the most they have taken and she said 75.  They had to do so over about an hour to keep the lady from fainting.  15 tubes was the most I had witnessed and I have given a bunch of blood with my two operations.  After the analysis of the blood is done they will recommend a strict supplement regime.  We also might have to modify her diet somewhat but we shall see.

He recommends 6 days of exercise and in the book he debunks all the excuses one might give for not doing so.  Now that we have sleep back under control they will also look at optimum thyroid levels and screen for possible toxins, pathogens, etc.  Once again going back to my love to manage and solve problems this will be right down my alley and at the same time a way to take care of myself since if Catherine is happy I too are happy.

During some of the podcast that I have done the question of not following a routine lifestyle keeps coming up.  I admit that what we are doing is counter intuitive but it seems to work for us.  What is routine, anyhow?  Since I left home to go to college I have been on the road ever since.  Some place a few years longer than others but as a pilot for 37 years most of it was spent living out of a suitcase.

I believe some people use routine as an excuse since it does take more effort to live life the way we do but by contrast they say you must exercise your brain daily.  They suggest brain games like crossword puzzles, etc.  As Catherine and I navigated the maze of travel from hotel check out to hotel check in I can easily say I exercised her brain over the course of the day.  Following the commands from me and others is not easy for her and sometimes it is frustrating but at the same time she knows when it is all over in she will be breathing the air in a new city with all its different sights and sounds.  Also, there is probably one of our “new best friends” waiting for us when we arrive.

She will always have me by her side and I can not imagine it being any other way.  Maybe one day it will be too hard for me to handle by myself and if that day comes we will have settled down and if someone comes up to me and asks if I am taking care of myself I can then say, No, can you please help me.  No one knows when or if that day will come so until then I will continue taking care of myself the best way I can one day or step at a time.