PUBLISHED ON February 6, 2006

The caregiver posts were my first attempt at blogging. I needed an outlet to avoid dumping all in husbands lap.

My grandmother passed away in 2005 from Dementia related to Strokes. I’m reposting for caregivers who give freely every ounce to keep loved one comfortable in their last hours.  Just one piece of advice if I may, Take time to clear your head, 10 or 30 minutes whatever you can do for yourself each week. I had brain drain after both of their deaths, my body was physically broken down. Due to the nature of the illness, it’s hard to take an eye off 24/7. I was fortunate we had hospice care for Granny. My grandfather was healthy enough to help, crushing to see the emotions as his wife for over 50 years slipped away.  

I’m Morning and She’s Still Alive

As the main caregiver for my grandparents my hands are overflowing lately, my mind allows me to run at that level by switching to what I call “caregiver mode”. I can manage information about the drugs they take, schedule appointments, discuss test results, anything needed for the two people I love the most, who are dying and “switch back” when at home.

Before breaking her hip my grandmother knew me, though our conversations were limited I enjoyed sharing memories with her. She really enjoyed a photo book I made with many photos of her beloved dog, Blackie. Thinking about Blackie always made her smile, even though he died twenty years ago, she remembered him like it was yesterday. On the way to their house last week tears were rolling down my face, I could not stop crying. It took a few minutes to figure out what was causing so much pain. My mind had switched from caregiver to granddaughter, realizing my grandmother no longer knew me. The realization was much harder to accept as her granddaughter.We would not share our memories again. I knew the day would come and said prayers often for the memories we shared. I’m in mourning and miss my grandmother so much.

Xx M  aka Warrior

The Disco period was great for Free Spirits, drugs flowed freely, a smell of change in the air. The music was alive, the dance floor had a rhythm like no other, leave your troubles behind and escape under the shiny ball. I started going to clubs with my father before my 10th birthday. When you have a parent with a mental illness, life can take unexpected turns. I hope you enjoy a couple of my favorites, if not pick up the request line and leave a request. Let’s Boogie!     Xx  M

 

 

Breath is the power behind all things. Your breath doesn’t know how old you are; it doesn’t know what you can’t do. If I am feeling puzzled or my mind is telling me that I’m not capable of something, I breath in and know that good things will happen.

Tao Porch0n-Lynch, Yoga Instructor  Age 96 

I’ve sent a dozen or so Instagram or Twitter notes. Sting is on tour, I dropped a line. Imagine my surprise he responded. “Thanks for the support and nice thoughts. Best wishes to you, God bless” WOW I was shocked.

I pray you have a great weekend. Be safe.  Xx  M

 

Let’s Talk Lyme

Last update, we talked about IV Therapy as a treatment option for Chronic Lyme Disease. IV Therapy is one type of medicine to help you heal. I also take a close to 20 prescriptions and who knows how many supplements. Insurance doesn’t pay for the IV Therapy which is quite common. To ask a question thru the patient Portal it’s $45 dollars. I blew a gasket last week and the portal is running hot. I’m blessed we have the money and see a top Lyme Doctor. I think there is a book called She’s Come Undone. I came undone and still finding parts.

Before quitting work, I was a highly successful, the top salesperson in the company. I set very high goals for myself and those who interact with clients. If I made an error I was accountable to make it right with the clients. If one of my people made a mistake, they got the eye and then I had to take responsibility.

There are several PA’s working in the office, mine is the hard ass, just the way I like it. I meet “The” PA while mine was out. I wasn’t impressed but chalked it up to being new. David and I have conference calls to see how adjusted to medicine, all the questions you wish would end. I heard my PA was not available for two weeks so we are meeting with the PA another PA. I am meticulous about my health care, I would reschedule before going to a fill in. I kept saying I’m not talking to her. She was reading questionnaire and David was answering. She said Melinda how are you feeling, ” ok except I almost split my head open. The knot was 5-6 inches big and it really hurt. ” Oh, that sounds like it hurt. My firecracker was lit and would blow any minute. In addition to passing over hitting my head on concrete, she said the IV that was on backorder was in and she would a one week protocol. After the one week, I am off IV’s and take ton o meds. She even indicated we might be able to coordinate to have my port removed.

A couple of hours later I’m putting my medicine for the week. Right away I notice two drugs on the schedule I don’t take. I became a complete baby and ass. I refused to take my IV’s or other meds last week. We’ve dipped into retirement money to save my life. I don’t think I expect to much from the office. First she would have seen none of my Psychiatric medicines are manages my the Lyme Doctor. The had written at bottom to continue to take two Xanax at bedtime. RED FLAG. If an IV medicine has been out of stock for months, I would as the person in charge if any where delivered. RED FLAG. My head still has a painful bump and on going headaches. So, nothing they can do. RED FLAG. She wrote the new oral prescriptions and changed to date to travel to their office instead of later.

The point other than the rant is if you are not feeling right, stop and have them start at beginning. If you’re dealing with another person instead of you normal person. Slam the breaks. I was so worked up, the chest pains started. I decided I would wait until morning to write the $45 letter to my PA

Chronic Lyme Disease is not a common cold or chicken pox, people die from Lyme. I didn’t want to add to the stats. I’m not suggesting you blow a fuse. If you are not getting the treatment expected or information is not shared with you, you have no clue when they think you’ll get well. Get a new doctor and maybe scream.

There are many details to manage everyday. If I can keep track with only 30-40% cognitive ability, what’s their excuse?

I still owe you a story about TSA checking my body parts for the world to see. Be prepare if you flew in/out Reagan National.

I’m always open for questions, you’re not bothering me and I’m glad to help.

:)

M

Do you want to expand your knowledge, travel without leaving home or a number of classes that grab your interest.

iTunes U offers an extensive selection of free non credit courses from top rated universities. No stress, go at your own pace, courses are complete flexibility.

iTunes U also offers hundreds of free Podcast on any subject you can imagine. Take a trip around the world. I love Podcast, reading done for you. The system can configure automatic downloads, has bookmarks, and keeps track of what you’ve listened to or not.

Courseca.org offers over hundreds of free on-line courses from top universities. No stress, work at your own pace. Drop a course as I’ve done several time. They also offer for fee courses  Corsica.org range of subject matter is impressive.

Berkley School of Music offers a limited number of free on-line courses.

I hope you find something interesting, maybe even something you can do with the kids.

Xx  M

I celebrate my 7th year blogging anniversary and turn 53 in four days. Neither occasion are important on their own. What make this year so special is I’m alive. So many of you prayed , sent well wishes yet never treated me different.

I started my first blog to help grieve my granny’s death. Flash forward, I’m blessed learning other cultures around the world. Blogging with millions of people at WP there are opportunities to learn, share and clarify the misunderstood. The most important lesson learned is people are generally good.

I’m free to write my thoughts, some will not agree, others will not. We need different perspectives to broaden our mind.

Thank you for making every year a good one. I appreciate the kind thoughts, asking how I’m doing and treating me normal. I hope to see you in the years to come.

Party On!!!!! Pass the milk please!

Hugs

Melinda

I dedicate this post to the chronically ill, newly diagnosed and their caregivers. You are the Survivors.

It took three painful years to learn I had Chronic Lyme Disease. I’ve had bumps over the years, nothing like Lyme. I’m totally dependent on my husband. Every week he takes countless hours off work. There’s IV Therapy before and after work. Day to-day monitoring the catheter with weekly bandage changes. Out of state doctor appointments once a month, insure medicines are taken properly, on time and everything you can think of.

I didn’t know what life would teach me. Boy have I learned and want to share with you. The ongoing guilt is a challenge for me.Guilt for not getting out of bed, doing laundry, on and on.

I had no concept of how humiliating daily life can get. I march on. At 52, I wear Kotex for daily spills. The agony of not taking extra Kotex on long flight.

I made a list to complete before treatment. HA! It’s hard to prepare for everything when an illness effects everyone different. The post is female oriented, I can’t speak for men. Use your imagination.

Some suggestions will make you laugh and others grateful to know. Here are a few surprises. The list is task you may want to consider.

Any Dental work

Mammogram

Gynecologist

By wardrobe essentials, one size larger, possibly add another half-size or larger.

Shoes become a nightmare, one day your sneakers fit, next day you’re searching for the big ugly pair. Buy a size larger. If you suffer from Edema another half-size makes your day. Edema makes my feet look like melons.

Don’t forget pajamas, undergarments, bra extensions, or Cami.

Your bladder can overflow without warning.

Can’t walk, can’t drive.

Load books, podcast and free College Coursework.

Because the catheter CAN’T EVER get wet, no shower and washing hair a nightmare. I did find a fix. Buy two hairstylist capes with velcro around neck. Wear one backwards the other normal. The backwards one tends to fall forward, I safety pinned arms and pinned back s much as possible. I used 2-1 shampoo, towel close for water in my face and drying towels within distance.

Many households keep rolling due to your efforts.The caregiver will feel like your mother or father at times. Without caregivers, life will weigh you down. Be generous, a thank you goes a long way. Caregivers handle day-to-day task, make appointments, manage medication. Pill maintenance is a full-time job.

I’ll share the next 18-24 month journey to wellness with you.

I can’t express the love in my heart for supporters, friends and followers You’ve stayed by my side in prayer and saying positive words over me.

Xx  Melinda

P.S. The reference learning to fly is Sky Diving from 18,000 feet.

I needed some laughter, the videos will do the trick.Have a great weekend  Xx  M

 

 

The trick on YouTube, maybe VeVo. Only difference, taped clock on far right. Click on. Time for Dance Party.