Taking Care of Me

When Mom moved in with me in 2008, I was finishing my Master's thesis and lecturing at the University. Getting adjusted to Mom being here, teaching, and the pressure of getting my thesis committee ready, pushed all thoughts about my own health issues to the back-burner. I'd been telling myself, since I moved to Nebraska from Tennessee in 2002, I'd work on my health, right after I finished the semester. Then it was the next semester, and then the next, and before I knew it, 6 years had passed and I was still procrastinating. I'm good at it, procrastinating that is, especially when it comes to my own health.

As Mom's cognitive abilities started declining, I read more and more about caring for loved ones with Alzheimer's. I needed help to cope with the strangeness of it all. One of the things I read repeatedly was that often a caregivers' health will decline because of the stress of caring for someone with dementia. Reality hit me. If I didn't do something, I would be in trouble in a few short years. The anticipation of caring for Mom, however long that might be and difficult, focused a floodlight on my own health. I grew more aware of, instead of dismissing, how I was feeling.

I noticed my recall was not as quick, answers I KNEW in class were not coming to mind, a general fogginess set in, I couldn't concentrate, and I was tired all the time. I laid around the house, took naps when I wasn't at school, and most days woke up calculating when I'd be able to return to a prone position. As a matter of fact, if I wasn't in the lounge chair grading papers, I was lying on the bed or on the couch. My weight held steady at FAT, neither up nor down, no matter how little I ate. I generally felt lousy, but my biggest complaint was an overall feeling of inflammation. I had joint pain, plus this generalized l inflamed feeling that sometimes sent me to bed wondering if I'd be able to continue. I vacillated between not taking anything and consuming several over-the-counter pain relievers to get through my day. I felt stressed and maxed out just getting up off the couch, let alone dealing with Mom's ups and downs.

Typically, over the past decades, I've focused on my weight, reducing it through diet and exercise as a means to feel better. Exercise always helped in the past, but how do you exercise when you hurt to move, and you have trouble just getting through the day? My weight is a symptom of my health issues. Losing weight would improve my health, but since it is not the sole issue, to focus only on losing weight was not going to improve my overall health and well-being. I knew this instinctively. I needed to concentrate on wellness in a holistic way, physical, emotional, spiritual. No one was going to take care of me, but me.

Physical:
I found a doctor who listened to me. Dr. Patricia Ryan [http://www.centerforconscioushealth.com/] sent me forms to fill out before our visit. She took a lengthy history, including asking for info about my health issues for each decade of my life (try to remember what sort of illnesses etc. you experienced when you were 2 years old), a lengthy current symptom survey, asked for info about my lifestyle (travel, etc). She queried me about my circumstances, even had me list various products I use on my hair, on my body, in the house, all by product name, just to name some.

In a ninety-minute visit we discussed what my possible issues were and she designed a plan to help me deal with the inflammation short of any tests. She listed several tests that would help us identify my specific issues and I decided to partner with her to work on what she found. Osteoarthritis (moderate to severe in right hip), low thyroid, heavy metal toxicity, hormone imbalance, food sensitivities (soy, dairy, eggs, gluten), a Lyme family bacteria hiding in my body (DNA test), and some bad bacteria in my gut (I've traveled a lot), added to a general systemic inflammation and contributed to the fatigue and pain I was experiencing. It all encouraged my body to hold onto fat, which ALSO increases inflammation.
Without boring you with the minute details, among the changes she suggested:

• eliminating offending foods (along with general common sense dietary tips, which I had already implemented...seeking to eliminate white sugar, flour, add nuts, seeds, good fats, plenty of organic fruits and veggies, drink pure water)
• adding homemade chicken stock (it really is good for what ails you)
• supplements to support my thyroid, liver, adrenals, and digestive tract
• hormone support
• IV Chelation therapy to reduce the toxic metal load in my body
• basic detox minerals and glutithione (powerful antioxidant) to help my body detox                     

Gradually, beginning slowly so as not to overwhelm, over a year-and-a-half, I made changes. The result is the systemic inflammation is decreasing (so far by half), my thyroid numbers are good, blood pressure good, my body's toxic load is lessening, I have more energy, and am experiencing an overall feeling of well-being. Recall is quicker and concentration better. The weight is slowly coming off. I'm exercising, not vigorously but steadily, and include deep breathing and yoga stretches. Plus, I periodically have a massage, not only for detox, but also for stress relief. The day I turned on the music and FELT like dancing, tears of pure joy flowed.

It all helps me cope with mom's erratic behavior and accusations (paranoia), but the physical is only one aspect of wellness. There is also the need for emotional support.

Emotional
Mom and I are linked in this emotional journey. No one fully understands what it's like to live with someone who has dementia. Others in the same boat understand to a degree, but each situation is unique. Mom is very sensitive to moods, attitudes, tones of voice, expressions. Keeping my emotions and attitudes in check can go a long way to helping her cope with her own erratic mood swings, although there is no fool-proof way to keep her mind from building strange scenarios.

I'm human. The tension of not knowing what kind of mood my mom will be in any given moment, can build up in me. Her accusations hurt. The strange stories she develops are maddeningly confusing, and jolt when she confronts me with them as if I should know something about them. So, I take breathers. Mom is not to the point where she can't be left alone for a couple of hours. When I need to get away, I go to a movie, go to a restaurant and sit sipping coffee, reading something enjoyable. I go outside, sit in the sunshine for at least 10 minutes, then move to the shade for another 30 minutes to an hour, with my bare feet on the ground, weather permitting, just enjoying the feel of the earth and sun. Don't laugh until you try it. It's amazing how calming it can be. For more information see:  http://www.earthinginstitute.net/index.php/book

I listen to the birds, read a book, or I close my eyes and just breath. The grand-children stopping by or spending the night, can also add a welcome relief from the negativity that generally permeates conversations with Mom. These are things I can do that help my emotional equilibrium. I also schedule myself mini-vacations to just get away from it all. I'm fortunate I do have family that helps out as they are able. They can't be with mom to the extent I am. Each is dealing with this disease in their own way and to a greater or lesser degree do what they can.

To socialize, Facebook, Twitter, daily connecting with people even if only in 140 words or short bursts, helps me not feel alone. I decided I need to get out and meet people (moving here, school, now mom, I haven't taken the time to build many friendships here in Omaha), so I signed up for a Book Club Meet-up. A Twitter friend told me, after listening to me vent about not having many outside activities apart from Mom, about Meet-ups, i.e. groups for people of like interests that one can join and participate in. I haven't been to one yet, but I'm looking forward to the July meet-up. Just to meet with others and discuss something other then dementia sounds like a good idea to me.
http://www.meetup.com/cities/us/ne/omaha/

I'm sure as Mom's disease progresses I'll have to hire someone to come sit with her so I can get out. I've visited with Home Instead, a service that will provide such care and alerted them that I may need them. I don't look forward to those days, but am committed to taking care of me so I can take care of her. That will be high on my list of needs when the day comes. For more information about Home Instead see: http://www.homeinstead.com/Pages/home.aspx

Spiritual
I'm listing this last, but each of these needs overlap and are intertwined. It is not step one, two, then three. The spiritual enlivens and directs all that I do, all that I am. I have my own faith tradition and read and study to inform my faith. I pray, meditate, and vent.

For years, I kept journals, filled mainly with prayer requests (and answers), thanksgiving, and at times worries. When the "what ifs" descended upon me in the middle of the night, I'd get up, turn on the light, and write them in my journal. Then I read each and crossed out all those what ifs that might never happen (usually the whole list), and go back to sleep.

When I vent, I find holding onto anger and hurt feelings only keeps me awake and agitated, so its best to forgive, for my sake, but also so that bitterness doesn't creep in and taint all my other relationships. Besides, in order to be forgiven, we are told to forgive, right? Forgive us our trespasses as we forgive those who trespass against us, goes a long way toward helping me not dwell on the past, and live in the moment. That's where Mom is, in the moment. Leave others to God. I'm only answerable for me, not anyone else. Sometimes, my vents are directed toward God, sometimes I'll call someone to vent, sometimes I get online and vent to someone who cares enough to listen. Vents help, but in the end, once I've vented, I must let it all go. When those thoughts come, release them by sending out feelings of compassion and love to those that cause me to rant, including Mom.

That's it everyone. That's how I take care of me, at this moment in time, where I am, in this journey with Mom in the world called dementia. I'm always looking for other ways that might help. Have you found ways to take care of yourself in your journey, in whatever world you are in at this moment in time? What are they? Will you share them, that I and others might benefit from the work you are doing on yourself, for yourself, and to help others?

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