When God Whispers

Today my mother and I picked up my Grandmother's ashes. We drove 140 miles round trip in a blustery cold wind with a dark sky. The deserts in California are usually quiet, sunny and warm, so why was the sand blowing across the freeway like a snow storm? We didn't talk much, except commenting on the Friday traffic while keeping a close eye on the semi-trucks bobbing with the wind gusts. The funeral director was kind, professional and asked if we had any questions. ~We didn't have any. She commented that people are generally surprised by the weight of human remains and that we should probably carry the urn from the bottom. --Good to know. This may seem a little unemotional, but I'm actually far from having no emotion. This experience has left me drained and seesawing between frustration and guilt. I've been beating myself up with the "If only I..." self talk. The fact that my Grandmother was 101, and had some serious medical issues that weren't going to get better, doesn't really matter. I feel like I let her down. I've always been the responsible one, the "fixer." This time, I just didn't have enough to overcome the exhaustion a 24/7 caregiver can experience- guilt. To be brutally honest, I wanted my unremarkable life back - guilt. I wanted control over my day - guilt. I wanted me time and date night with my husband - guilt. Then you have these lightening bolt moments. Someone says something casual in passing, and there it is... you hear the choir of angels again. I firmly believe that God gives us flicks to the forehead to say: Snap out of it! I need you to focus...

I found an on-point article by Jan Dravecky titled: False Guilt - Too Heavy a Burden. It describes the difference between true guilt and false guilt.

True guilt says, “I have done something wrong that I am responsible to make right.”
False guilt says, “I feel responsible for something that is not my responsibility or is out of my control.”

My husband shook me to the bone one day when he said, "It's not about you, it's about Grandma." I needed to hear that. It confirmed that I was where I needed to be and doing my best was all that was being asked of me, not perfection. We made collective decisions as a family, not decisions made in isolation, about getting my mother well and making sure my Grandmother was safe and comfortable. That meant custodial care when she required more than we (I) could provide at home. Custodial care was something I didn't understand until put into this situation. It made me realize that illness and aging is personal and specific. There is no one-size-fits-all and we should never, ever judge or ....yes, I'm going to say it, feel guilty if we are doing our best. There is no denying in-home vs. institutional caregiving is a tough decision. Custodial care does not mean you drop someone off and wash your hands of them. I was still my Grandmothers advocate and was visiting her almost every day. In some ways, this was more disruptive, but I knew her needs were being met and we had peace at home.

If you listen to God's whispers, you will hear the answers to your prayers. God will meet you where you are. I'm a very literal person and work best with very specific instruction and feedback.  Why don't family crisis' come with an instruction manual? 

One day when my mother finally felt confident enough to go shopping, our first stop was the local vitamin store. The manager recognized her (as she has spent a small fortune there over the years!) and when she heard my moms testimony was shocked.  Abruptly, she gave me a hug, and looked into my eyes and said: "God borrowed you for a short time and he will put you back in a better place when he doesn't need you any longer." This was such a light of encouragement and I believe not just a coincidence. Now I keep reminding myself that this situation is temporary. God doesn't do things half way.

My recommendation is that when you find yourself falling down the slippery slope of false guilt, resentment, frustration, anxiety...all things negative, be prayerful. Step outside, take a walk, breathe deeply and look upward. Like the clouds, your day will change. Storms are always temporary.

Meet Helen...

Helen at the age of 19

My 101 year old Grandmother Helen is the other half of this advocates journey. She was the eighth child in a family of 12 brothers and sisters.  Her parents, a groomsman and maid, emigrated from Poland and settled in a small farming and coal mining community in Pennsylvania.


Adalbert and Agnes around 1905
Note: They are holding hands

When someone lives long enough to see 5 generations (Helen was a great-great Grandmother), details of the early years almost become folklore. Every family has stories about young love, search for a better life, war, tragedy, survival, joy and unconditional acceptance. Family history are threads carried through the generations that weave into our lives and give us more than just DNA inheritance.

Details of the later years center around safety, quality of life, nutrition and physical activity. She walked without any assistance, was continent, and had conversations that displayed her sense of humor, stubbornness and feelings of confusion and loss. Thanks to my mother’s quality of care, she only took vitamin supplements, no medication. I raised two children, but being a caregiver for someone with progressing dementia is completely different. They don't learn or understand boundaries. As I have virtually no medical training, and only limited exposure to her behavior from family gatherings, it was extremely frustrating to constantly be fighting a battle I was never going to win. My mother never shared the details of what was required as a caregiver and wasn’t well enough to answer questions or give instruction. I was overwhelmed with what I didn't know and worried about doing it 'right.' I finally went online to do some research. I literally stumbled upon a very concise presentation by Teepa Snow called Caregiving Gems on a site called Home Instead Senior Care of Sonoma County. It was like a light bulb turning on with choirs of angels singing! It was my epiphany moment. It is directed toward caregivers and was exactly what I needed to understand her world. As I talk with others that have parents and loved ones diagnosed with this disease, our stories are the same and almost text book predictable. Someday I’ll be able to have roaring belly laughs about some of the things we went through. I have profound remorse for the way I handled some things, but I didn’t know…

 Here are a few gems:

Grt Grandma Agnes in her garden

>Once we took Helen out to dinner for my mother-in-laws birthday. She just kept asking (very loudly) where the ‘body’ was. She often thought we were going to a funeral but never knew who died.

>During her annual physical, she was asked if she knew who the president was. She confidently remarked: “Roosevelt”

>She would often sit in a rocking chair in her room and talk to a picture of her mother on the dresser. She would tell her how much she missed her. Sometimes she would ask me if she was still alive. It took me a while to figure out what to say. I couldn’t imagine going through the grieving process over and over. She grieved for all of her brothers and sisters too. Considering that she didn’t know who I was and only occasionally recognized my mother by name, her world was a very lonely place.

>Helen would occasionally conspire to go back to the farm. She would say she was just curious about what it looked like now and if anyone she knew was still there. Then she would name off a bunch of people I had never heard of before. She would ask about what types of jobs there were available. With all the “good looking houses,” she was sure there were plenty of jobs she might be able to get to raise money to go back home. You couldn’t talk her out of it either.

I’m sharing these personal stories so that others might identify with something similar. I firmly believe in taking care of your own. Caregiving has definitely been the hardest thing I ever had to do. You aren’t appreciated because there isn’t the capacity for recognition. You sacrifice financially with the pressure of knowing there are limits to what you can provide. You can become bitter or you can take a step back and know you are doing the right thing, and this is only temporary. Life, even long ones, are temporary.

Gray hair is a crown of splendor; it is attained by a righteous life.  -Proverbs 16:31

Helen Majeski Oct 12, 1913 - Apr 2, 2015





An Advocate's Journey

This is my story. Trust me, it isn't unique or profound, but it was life changing, a fork in the road, a test of endurance, leadership, patience, decision and prayer.  No one wakes up in the morning deciding to turn their world upside down and launch into the unknown.

My mother has been an RN for 57 years. The saying "once a marine, always a marine" also applies to a nurse. Even though she retired 10 years prior to become my grandmother's caregiver, she kept her license current -just in case. She believes in a holistic, preventative approach to illness. Probably because she saw the long term side effects of many, if not all, of the prescription drugs on the market today and the fact that she had no major illness up to this point in her life by following this mantra. I had been having conversations with her off and on for about 2 months because she was ill. Flat-on-her-back ill. I finally talked her into going to her doctor to get some tests. There were a few red flags, but nothing that pointed to the crisis that was about to happen.

I had been reorg'd out of my job in the software industry 4 months earlier and was 4 days away from taking a Project Management Professional certification test when I received an early morning call from my sister. She had taken her to the hospital where she had emergency surgery for a perforated colon. When she asked me to come from Texas to California, it didn't register what this really meant. You are immediately consumed with worry about your mother of course, but there was so much more. I had 40 minutes to throw some clothes into a suitcase, not knowing how long I would be gone or what faced me when I arrived. I'm writing this 9 months and 3 seasons later.

I arrived after dark to be met by the heaviest monsoonal downpour I ever experienced in Southern California. Lightening was flashing, the roads were flooding and the windshield wipers had a hard time clearing the water so I could see the road. I arrived in ICU to see my once active and independent mother on a respirator with about 17 IVs. She had an incision that went from her breast bone to her pelvis. There were 4 drains coming out of her abdomen and her small intestine had been rerouted to an ostomy.  The doctor explained that she survived the surgery but the secondary infections were now the battle front. How my life had changed between sunrise and sunset...

The name of this blog is a reference to my Grandmother Helen. She lived with my mother on the edge of a lake. She loved to sit in the sun. Her body craved its warmth. She had dementia, which I also knew nothing about. I was in for an education.

Because some of this story will be topics explored in future writings, I'll fast forward and say that my mom is getting stronger every day. She is working toward having her ostomy reversed and living independently again. It was a lot of work to get this far. I've learned that every family needs to have discussions beyond the Family Trust, Will or DNR release. If you have loved ones that are reliant on Medicare, and/or state run insurance programs, you need to understand their complexity and the limits in coverage. You need to understand your rights when it comes to in-home health services and long term facilities (skilled nursing and custodial care). Physical Therapy, Occupational Therapy and social interaction are as important as any medical treatment in recovery and maintaining quality of life. These things are not optional.
As a caregiver, you need to take care of yourself. Don't feel guilty about it.

As I said in the beginning, my story isn't unique or profound. There are thousands of families facing their own crisis or will be. It's time to bring the discussion of elder care to the table.