90 Years Young

2 Jan '55
Dead Mans Point
(Apple Valley Desert)
A cowboy?

Happy Birthday Dad!

My father had his 90th birthday this week. Born in the Netherlands, he is the third oldest of 10 children. In his amazing life, he coped with heartache, disappointment and pain; reached goals of achievement in the midst of impossible odds; learned that discipline and self-sacrifice brings reward; and has found contentment and happiness in his old age. He said that he wouldn't change a thing! 
My father had a work-hard, play-hard philosophy. He was very athletic and enjoyed being outdoors. I'm talking in the past tense because today he has arthritis that has forced him to limit his activity. He was an avid skier, hiker and camper. After injuring his hand in a factory accident in the 1950's, he started his own landscaping business and worked 11 hour days, 6 days a week. I vividly remember the smell of his work truck - cut grass, tobacco and perspiration. As a child, I would love seeing him drive up at the end of the day so I could tell him about everything that happened. He never said he was tired or that his back hurt.   

Sept 1951

Sept 1953
Hospitalized after losing 2 fingers

If my dad had a vice, it was smoking. He started at 16 and didn't successfully quit until he was in his 80's. If you notice, he is smoking in several of these pictures. He attempted to quit several times, and said that it was an extremely difficult addiction. Because of this conversation, I never smoked. I figured that I lacked the self-discipline to stop, so it was better never to start!

1977 - Took my drivers test in this beauty

When we have our youth and health, we rarely think about the effects our actions, environment or culture will have in our later years. You can't always count on genetics to cancel out our bad decisions. Dad appreciates the "good stock" that he inherited. Stirring pesticides with unprotected hands (long term effects were secret or unknown in those days), smoking non-filter cigarettes for 70-something years (given free in the military mess kits in the WWII era), working in the sun without protection, and years of physical labor can take a toll on our physical bodies. What are you doing in your remarkable life today that will impact your health (good or bad) tomorrow?  

90 years young - June 23, 2015

Happy Birthday Dad!

Healthcare Today; Maybe Tomorrow

The 2015 Internet Trend report by Mary Meeker came out last week. For those that don't like numbers, I submit the loch ness monster for your entertainment. The California draught has him beached at the moment which is probably where, as consumers of healthcare, we are headed. This post may be a little dry (no pun intended), or you may ask yourself "tell me something I don't know," but here is the hard data that tells us we need to prepare to pay more for our healthcare and it's going to be harder to know what coverage we actually have. There is no magic pill to make it better, so don't expect a sugar coating.

The 2015 Internet Trend is a broad based report that provides the data behind technology trends.  Kleinerperkins did a fantastic job. I was surprised to find data about the healthcare industry, but the presentation points to technological opportunity in this area to provide more of an 'automated' and 'fun' interaction to manage and prevent chronic disease. This might work with people that understand and use technology, and have time before they are ill, but what about the elderly that don't understand or trust technology and aren't connected today?

First the numbers --

http://www.slideshare.net/fullscreen/kleinerperkins/internet-trends-v1/109

The Babyboomers were born between 1946-1964. The 'boom' refers to the fact that there was a surge in new born children during this time frame associated to men returning from war and ultimately starting their families. After 1964, the surge leveled out and even declined. The average size of a US household today is 2.5 people. I don't know how you get half a person <snicker>. The obvious is that the Boomer generation is now leaving the traditional workforce. Many US social programs like Social Security, Medicare, unemployment, and disability insurance (among others) were implemented during this time frame and were based on the premise that there will always be the right proportion of working people paying into these social programs to sustain them and then collect the benefits when needed, I.E. retirement, disability etc . With fewer people paying into the system, and more people qualifying to receive benefits, the 'money pool', like the California reservoirs, is growing smaller. (tell us something we don't know) News flash: The data above confirms that as of 2015 Boomers are no longer the key contributors to the system.

http://www.slideshare.net/fullscreen/kleinerperkins/internet-trends-v1/103

The data above is specific to social insurance benefits, but I think there is a logical relationship between a certain age demographic no longer working and the number of government benefit recipients rising. 

This week I had a conversation with someone originally from the UK. He said that many European countries adopted social medicine after WWII because so many were in need of medical care. If everyone didn't pitch in to contribute to healing their population, there wouldn't be enough healthy people to rebuild. I think Americans are lagging with this understanding and aren't used to personally contributing to their health insurance.  Complaints about Obamacare are starting to get louder because we are starting to see the increased cost to cover the uninsured segment of our population.

http://www.slideshare.net/fullscreen/kleinerperkins/internet-trends-v1/102

Employers are asking their employees to contribute more toward the cost of health insurance. The data in the graph above supports this. This trend will continue because it is written into the Affordable Healthcare Act. Hang-in and continue reading...

So let's review: Less people are paying into the social insurance system, more people are entitled to social insurance benefits, employers are contributing less, while employees are asked to contribute more.  Still haven't heard anything new? What about the 2018 Cadillac Tax?

http://www.slideshare.net/fullscreen/kleinerperkins/internet-trends-v1/185

I had to look this one up because it was new to me. Just a few articles from April 2015:

Politico: Cadillac Tax the next big Obamacare battle

"At issue is a 40 percent excise tax on the health benefits companies provide their workers above a certain threshold. In 2018, the tax will hit insurance and related perks valued at more than $10,200 for singles and $27,500 for families. So for family benefits worth $30,000, the tax would apply to the $2,500 that’s above the limit."
Forbes: Obamacare 40% Cadillac Tax Hits No Frills Plans Too
"Across the board, the Cadillac tax puts pressure on employers to offer less-generous health insurance plans."

There are so many conversations about this, I must have been living under a rock. To be honest, when I was getting corporate insurance, I naively assumed social benefits didn't impact me, so meh?

The message of the 2015 Internet Trends report is not to set off bells and whistles about the direction of health care in the US. There are plenty of other dedicated sources that are doing this intentionally. I'm using it as a reference source because of the compelling evidence provided by an organization without bias in the healthcare arena. To circle back to my original point about the elderly and their families that are struggling to navigate the complexity of health benefits, we are going to need more than a tool to remind us that we need to take more steps during the day. The data we have today says Medicare will be bankrupt in 2030. I bet this will be accelerated as we put more pressure on the consumer/employee/citizen to buy expensive coverage and lower the entitlement requirements. Let's be honest, it's election season and this should be a platform line-item. No politician wants to be known for hanging the needy out to dry.

http://www.slideshare.net/fullscreen/kleinerperkins/internet-trends-v1/186

Healthcare, home-health, caregiving, medication, chronic illness, a large chunk of our population receiving benefits rather than paying into the system, cost of developing sophisticated technology are things we all need. Why are we trying to reinvent the wheel? Shouldn't we be looking at the countries that have figured this out? 

Move it, Move it

What is all the fuss about staying active? 

If you search Physical Health on the internet, you get about 868,000,000 results in .26 seconds. It seems that everyone has something to say about it. Being active can help prevent or lessen chronic health problems such as heart disease, diabetes or arthritis. There is also evidence that exercise improves brain function as we age. There are four exercise categories that work together to improve overall quality of life: endurance, strength, balance and flexibility. (NIH) This gives a whole new meaning to 'use it, or lose it!'

It is amazing how fast we can lose it if we don't use it. After five weeks in the hospital, my mother was moved to a skilled nursing center for wound care and physical and occupational therapy. Physical therapy focuses on the four categories of endurance, strength, balance and flexibility, where occupational therapy focuses on mental and mechanical coordination like sitting up, dressing in the proper order, combing your hair, eating etc.  Before her illness, she could do moderate to high physically demanding work; yard work, house work, moving furniture, washing windows, climbing ladders, trimming, painting, hanging wallpaper. There wasn't much she asked for help with. Not bad for a 78 year old. When she arrived at the skilled nursing center she could not walk, go to the bathroom, or sit up in bed on her own. The physical therapy sessions were emotionally draining. The first time she put full weight on her legs she cried. I had never seen my mother so weak, and paralyzed with fear and anxiety. She was so willing to give up, but the physical therapists coached, pushed and encouraged her every step of the way. There wasn't a physical reason why she couldn't gain her mobility back.   

Mom on her daily walk

The physical therapists explained that for every day we are in bed (with a cold or whatever), it takes 2.5 days to physically regain our strength. Muscle atrophy starts to set in that fast. Muscle recovery takes even longer for someone over 65. So if you do the math under the best of circumstances...she was hospitalized for 87.5 days. That requires about 219 days to recover... that is without any other complication like a massive incision or battles with infection! The therapists gave her a goal in order to go home. She had to walk 100 feet with a walker. Goals can be a powerful motivator. She came home after three and a half months. She still wasn't able to lift her legs into bed, needed a wheelchair/walker to get around and needed assistance with showering and dressing. Regaining her strength accelerated when she was able to sleep uninterrupted, had a better diet (high protein) and continued her exercise routine. Her will had returned and a little over a month later, she climbed the stairs on Christmas day. 

Notice we are talking about physical activity not necessarily getting 'fit.' Muscle loss in the elderly is called sarcopenia. It starts in our 40's and 50's and progresses at .6%  each year. Adults in the US over the age of 50, participating in resistance exercise is very low (NCBI). According to the US Center for Disease Control and Prevention,  adults 65 years and older require a minimum of two and half hours of moderate aerobic exercise and muscle strengthening exercises each week. Preferably, broken down into 30 minute increments each day. If you think you can't afford that commitment, you can still benefit in three 10 minute intervals. Increasing that to five hours each week will increase the benefits even more. How many of us spend more time than this on the phone, watching television or just sitting quietly?

I had three different conversations with people this week that went something like this: 

"if he/she was living such a healthy lifestyle and still got sick, what is the incentive to work so hard at it if you are still going to get disease?" 

Some of it is genetics, but I'm going to steal the explanation from one of my mothers doctors. "If you didn't take such good care of yourself, you wouldn't be here at all." Bad stuff is going to happen. If you can prevent or lessen the impact of chronic disease, why wouldn't you?  

History is making a case that extreme lifestyles are not good for us. Our great-grandparents were pre-industrial age and wore themselves out in their 40's. Life-expectancy wasn't so good. Fast forward to the technology age and this is the first time medical experts are predicting that children will not live as long as their parents because of sedentary lifestyles. Genetics will only get us so far. We need the pendulum to swing back to center to a work-life balance. I know that term is way over-used, but firmly believe there is truth in this. I was working 16-18 hour days sitting at a desk in a high stress position. Some days I would only walk about 1400 steps (10,000 is the recommended minimum) and that was mostly due to the fact that I had to walk to and from the parking lot. I had trouble standing, sleeping, my balance was off and had become an unhealthy weight. I was going down a path of self destruction and needed to set some boundaries around personal time and dedicate a commitment to my own health. While others around you can help, you have to do the work.

Physical activity is the basis of physical and mental well-being, especially as we age. It has to become part of our life-style. Check out some of the reference site links in this discussion. You don't have to hire a personal trainer. You don't have to dedicate large chunks of time. Just find something you enjoy that gets you and your family off the couch, or out from in front of the computer.  

Here is a motivating song to put a pep in your step. I love the Madagascar series and made this my theme song the first time I heard it...love the dancing granny. ;-)

https://www.youtube.com/watch?v=z0qkUIFEtXM

The Golden Rule

Have you ever had an epic, turning-point week? Maybe you passed a big test, had an important doctor's appointment, received good news about a job interview, or someone came home safely after a long journey. Our family had all of these things happen!

I think the most inspiring conversation that happened this week was with my mother's surgeon. She had her sixth month assessment to determine if she was ready to have the second phase surgery to have the ostomy reversed. The doctor didn't recognize her. The last time she had been to see him, she was in a wheelchair and honestly looked pretty rough. She was told to gain weight and work on getting her strength back. He made it very clear that she wouldn't have the second surgery if she wasn't, at least, as strong as she was before her illness. When she came home, I had to lift her in and out of bed, help her dress, prepare her food, dispense her medicine and assist with basic hygiene needs. Today she does almost everything on her own. We've returned the wheelchair and she takes her dog on a walk at least once a day. Because she had worked so hard, it was a little disheartening that the doctor had to leave the room to read her history to continue our discussion. This appointment was the single goal my mother had for the past 7 months. It was her first thought in the morning and the last thought before she fell asleep. ~He returned after only a few minutes and said, "now I remember you!" He recalled many of the horrible details of being in the ICU for 3 weeks. That is when he told us about the Golden Rule.

"So in everything, do to others what you would have them do to you..."     Matt 7:12

I think it is important to understand a doctor's mindset and his philosophy about having someone's life in their hands. Is it a speed competition or does he see himself and his patient as being one? He proceeded to tell us that his peers often criticize him for being so slow with his surgeries. He said he doesn't care what they think, because of the Golden Rule. And, if they are going to give him such hard time, they need to get it right. He isn't slow, he is thorough. His anxiety, confidence, and success are his patients anxiety, confidence and success. He was once asked if he could operate on his child and he said "yes, because I have the same approach with everyone. There isn't anything I would do different for my child than what I would do for one of my patients." This boils down to trust.

He was open and honest about the complexity of the surgery and discussed potential complications with a backup plan if any problem became a reality.  We didn't feel rushed, we had our questions answered in detail and walked out satisfied that we found the right person to do this. We see him as a person, a partner, not just the surgeon that was on-call.

I think the take-away from this is, do you trust your doctor? Do they follow the Golden Rule? It is critical to have this Golden relationship with your doctor, your caregiver, your financial advisor. Don't settle for anything less.

Have a Remarkable Day

I think about losing all of my precious friends and family and it makes me think of how hard it would be to live in this world under those conditions. I was reminded of a letter of thanksgiving I had posted on my FB page last October. My mother was finally well enough to be asked how to respond to my Grandmother's delusions and depression. She told me that she gathers a bunch of mail (mostly advertisements and cooking magazines) and has her open it with a cup of tea and a couple of cookies. This seemed to help. I had been throwing out the mountains of junk mail and election advertisements in anticipation of moving them and didn't have anything for her. So, I reached out to my FB friends and asked if they would take a moment to send her a simple card for her 101st birthday. It didn't matter if she knew them personally or how much the card cost. She was overwhelmed with the responses. Every day for several weeks she received well wishes. After awhile, I had to lock the front yard gate because she was going to the mailbox on her own checking for mail and I was worried she would fall on the loose gravel. These acts of kindness brought her hours of joy. These wonderful friends of mine also remembered her on Halloween, Thanksgiving and Christmas. She was an adopted Grandmother of my friends and their friends.

Thought for the day:  Can I take a few minutes to reach out to someone that needs an ear to listen, a shoulder to cry on or a smile to get them though a difficult time? Celebrating is easy, but lifting someone up when they need it is remarkable.

Open letter to family, friends and friends-of-friends...
 

Thanks to all of you that sent my Grandmother the heart-felt birthday wishes. It really made a difference in her spirit. For the past month, I have been packing my mother's belongings (trust me, she doesn't have the word down-size in her vocabulary) so that we can move both of them in with my husband and I. I think for someone that is completely dependent on the familiarity and routine of her environment and the caregivers that surround her, my Grandmother is probably suffering from the changes in her life as much as my mom is.

~A special shout out to Cathy. Caregiving is a special calling. You have my admiration.

~An over achievers award goes to my cousin Lorraine. The 80 something cards and letters from the 1st and 2nd graders at St Hedwig school was genius. The drawings and well wishes are priceless as well as my Grandmothers comments. They are all her personal friends now.

~Andrea, thank you for the royal purple "papoochees" (polish for slippers). They match her tiara. wink emoticon
 

I believe that when we feel we are valued and have loved ones that help dry our tears, give a soft pillow to ease our tired bones, or to take the time out of our busy lives to say hi, it gives a little energy and happiness to that person.

BTW, Grandma participated in the group physical therapy session today at my moms skilled nursing center. She was an inspiration.

These acts of kindness don't take much effort on our part, but make a huge impact on those we touch.

 Thanks again, and have a wonderful weekend.

Money, Money

When it comes to money, my parents philosophies are on opposite ends of the financial spectrum. My father was a young teenager in Holland when Germany began its occupation during WWII. There were ten children in the family and extreme measures were required to keep the family alive. In 1945, the last year of the war, they were living on one loaf of bread, per person, per week. People weren't just starving in the concentration camps (- thank you American Red Cross for saving so many). He immigrated to the U.S. in the late 1950's where he was sponsored by his brother and a Dairy farmer (working as basically an indentured servant) for a year. Then he took a factory job where he had an accident and lost two fingers on his right hand. He had formal training in the flower hot-houses in the Netherlands, so he decided to start his own landscaping business. He paid his taxes quarterly and bought business licenses in all the cities he worked in. Everything by-the-book. I'm skipping all the good stories for a later time, but he worked hard, saved and did some investing that helped his nest egg. He is a planner. He has a Family Trust, knows how he wants things handled and has made all the legal arrangements. He's talked to my siblings and I, and flat-out told us that if anything is contested, you are "cut out." He wants his body donated to science and then cremated. No fuzzy questions here. ~Dad, have I told you that I love you lately?

My mother hasn't been so disciplined. She came from a working class family that, until her and her sister's generation, had little education. I describe her as a free spirit. She's a cross between a  'flower child' and patriot. She made good money as an RN, but started her retirement fund late in life as being a single mother to 3 children, then supporting my sister and her two children, brought other priorities. When the economy went bad and my Grandmother came to live with her, she used her savings to maintain her lifestyle. When you are active, independent, living life how you want... able to support family, church and other charitable organizations, the last thing on your mind is catastrophic illness, long-term care, how the bills will get paid if you can't make sound financial decisions. --Right?  

When you are healthy is exactly when you should think of these things!

I'm not a professional in this area, but I do know as an executor, rescuer, caregiver, responsible party etc., how overwhelming it is to step into this role not knowing where the paperwork is, or who has had access to it. About 7 year's ago, my mom came to my house and announced that she wanted me to be a signer on her  bank account. I had reservations about this. Would I have to pay taxes on her balance? Would it hurt my credit if she became overdrawn? Would I be responsible for charges incurred? I was happy that my mom was preparing for her future and was hoping it would be enough. I didn't protest and naively signed my name on the dotted line. I say naively, because I didn't push her to do more. Understand that my mother wasn't irresponsible, but she was too trusting of people that took advantage - multiple times. Frankly, I completely forgot about being a signer until her illness. Boy, was I glad I was on the account when she couldn't manage anything for over 7 months! Two weeks before her emergency surgery she started a will, but had no witness' signature, so it really wasn't valid. Only the DNR (Do Not Resuscitate) order was notarized. Every medical facility wanted a copy of that!

I cautiously state my opinion in this matter because I don't want to come across as insensitive, harsh, or that I'm throwing my mother under the bus. She is a fierce prayer warrior, loyal friend and the worlds best encourager.  I'm not giving professional advice but want to paint a picture of the anxiety of stepping into someones shoes without official instructions and not really knowing their wishes. It is not OK to be passive or procrastinate in the area of financial planning or authorization boundaries. So many things, of a legal and harmonious nature, are dependent on this (see conversation starters below). If you are an independent adult, you must make decisions and have crucial conversations with the adults in your immediate family (children should grow up hearing these conversations too). Many Senior Centers have volunteers that do this paperwork legally and for little to no-charge. I read an article the other day that said people in their 20's are starting retirement accounts where their parents didn't do much until their 30's. I guess our kids are smarter than we are at times! There are other low-cost options where you can get advice and legally binding forms. Google it.  Since I'm stepping out here, I also want to say that it is not OK to have your children as your intentional financial back-up plan. Even though my husband and I were willing to step-up for whatever was needed, I wasn't working, lived in another state, became my Grandmother's caregiver (meaning I could not work outside the home), was my mother's advocate and was driving 1-2 times a day to the hospital and skilled nursing center, renovated a house for handicap accessibility and basic move-in readiness. Then moved my mother's belongings and my Grandmother all in 3 months. While even the best laid plans would have been tested, not having the ability to pay moving, utility expenses, rent and my mother's insurance co-pays would have brought two house-holds down.

A wise man once said, "Hind sight is crystal clear." I look back on the past year and see our heavenly father's hand of protection and provision in every event and every step we took.  Faith in God brings perspective and hope. Everything was orchestrated down to the letter for my mother's recovery. That is a blessing that I'm going to claim. All I had was faith because I didn't have foresight. 

These are some things to get a conversation going:
Disclaimer: Some of these topics are from our personal story. Discussions are unique and personal. They should be held before a crisis occurs and should strengthen family ties rather than tear them apart. The important thing is to not hold back and have open and honest conversations.

• Forget death, you don't know the day nor the hour. It just doesn't work like that. If something happens where you are not able to make competent decisions, who do you want to be your financial or medical representative?
• Do they know where your written instructions are?
• Are the instructions complete or are there unaddressed items?
• Once you select a representative, (and they agree by-the-way) how will you transition the responsibility back once recovery has happened? This can be controversial. My mother didn't come to me and my husband saying she was ready to take back control. For some reason she had an acquaintance take her to the bank to get balances and statements. We had changed everything to online banking and she was upset that she didn't have any checks. We had set up email and text notifications whenever threshold activity was exceeded because of prior fraud activity, so it wasn't long before we knew she was moving money into her savings from checking. The bank statements didn't show itemization on why money was moved or withdrawn. When we provided her an itemized breakdown of everything that went in and out of her account, she said she was "devastated." Her focus is on getting a car so that she can be completely independent again. She didn't have a nest egg, so this goal is going to take considerably longer than she was expecting.
• I think most people would want to recover at home. But, what if your -condition requires more care than your loved ones can provide or that your insurance provides coverage for? 
• Most insurance coverage has a 90 days per year cap for skilled nursing rehabilitation. How will you plan for this?
• Are you aware that Home Health and Insurance providers will try to pass off some medical treatments to the family? Do you know your rights and have your really looked into your medical coverage?
• Most of this conversation has been directed toward Parent/Child relationships. Spouses are part of this equation and typically a package deal. Are they participating in these conversations? These situations are very stressful and relationships can be tested.
• Our story was complicated by the fact that my mother was my 101 year old Grandmother's caregiver. She had dementia, kidney disease, digestive sensitivities and advanced osteoporosis. I had no playbook to deal with her issues. Is there anything that you are exclusively doing that is critical for the safety, security and comfort of someone else?
• What about a pet? My mother's dog was untrained, spoiled and had the run of the neighborhood. He marked his territory wherever he fancied. But, was a constant companion for my Grandmother. She remembered his name, but had no clue who I was. We made obedience training a priority and learned to hold our tongue in front of my mother. 

Do you have any other topics that should be brought up in a family meeting? I've elaborated about my mother and Grandmother, but my husband and I need to have the same discussions with our kids. Considering they are in their early to mid-20's, it's going to be interesting.

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.