Grey Days

               I went to the Biltmore in Coral Gables last night and heard E.L. James, the author of “Fifty Shades of Grey" speak. That book has no relevance to Caregiving, (and if you are familiar with the trilogy you now it isnt even close!), but, basically, today I am inspired by all things grey.

                When I was a Caregiver, I longed for the simplicity of “black and white.” A trip to the doctor is a great example, of how you want your options laid out in clear cut terms, but the doctor is not prescriptive, and will lay out your options, but ultimately the choice is yours and for decisions, you are on your own. It’s maddening!  It’s all for good reason though. Doctors can give you options and tell you the statistics, but there are so many variables that each case is individual. Doctors cannot predict which end of the bell curve you will land. Medicine is a science, but it’s not exact. They can’t tell you, “if you do this, here is your outcome” because there are no guarantees. They lay it out and talk in terms of “prognosis” or “best practices” and they can make recommendations, but they can’t decide for you. You need to navigate the murky, grey waters and decide for yourselves. This is one time in your life you actually WANT someone to tell you what to do, but the system doesn’t work that way.

                The best way to navigate through the grey is education. Research your diagnosis and condition online on reputable sites like WebMD or Livestrong. There is so much information available at your fingertips, so make that effort before you make your decision. I will caution you that, while I recommend being educated, I do not support becoming obsessed. If you find yourself 25 pages and 5 hours into a search, you may be on the downside of the slippery slope into an unhealthy obsession –don’t go there! Get as much information as you can and need to make a reasonable determination to move forward.

                Leave the doctoring to the doctor. Related to that point above, it is important to be educated, but realize your doctor is the one that went through medical school and if you don’t have MD, DO, RN, PA or such credentials next to your name, leave the medical practice to the professionals.

                I also recommend writing down your options with the pros and cons. Weigh your choices carefully. Prioritize based on what is important to you and what you think is feasible. With health, I find you can’t get too far ahead of yourself- one step at a time. So maybe your first step is another test to get more information or maybe it’s taking a prescribed medication and dose, and then you progress from there. This will read corny, but here it is - the only way out of the grey is to take it day by day!

My Unc

                It is high time I introduced you all to my Uncle Joe, one of the greatest men I have ever met! He was my mom’s best friend when they were young and she introduced him to his future wife, her sister – my aunt. I always say my mom gave me the two greatest gifts – life and my Uncle Joe! He loved me as his own and helped raise me from the time I was 8 through 17. He never made me feel less than a human being and truly loved me like his own blood. I think it takes a special person to be able to open their arms, hearts, and even pockets financially, to take care of a child that isn’t their responsibility. My Uncle did all that and more. He is a Marine and the greatest patriot I know. I really believe red, white, and blue runs in his veins through and through, and I don’t think I have ever met anyone that loves this country more than my Uncle. If he could enlist and serve today, even at his advanced age, he would. I could go on and on about how special a person he is, but simply, he is my moral compass, and when I find myself confused or facing a tough decision, I always ask myself “What would Uncle Joe do?” to move on.

                When times were hard with Gramps and the whole Caregiver process, Uncle Joe was my rock and would offer encouragement, advice where he could, and did it all in a very nice, simple way. He never made me feel wrong or inadequate or incapable –I did a lot of that to myself. He talked me down from the ledge many times. He was the first person to call “wrong, wrong” when it came to my Aunts and some of their behaviors. He was never judgmental, just honest and to the point. He gave me perspective when I couldn’t see where I was going and the big picture. He is one of the few people in my family left, that I trust and love, and maybe more importantly, I know loves me back.

                When the Terry Schiavo case was all people talked about, my Uncle and I had a conversation about Advance Directives. If you don’t have one in place, explore it, decide if it’s for you, and if it is, sign on the bottom line! I don’t remember a lot of the details, but I do remember my Uncle Joe’s position, that he was pro-life and wanted to be kept alive by whatever means, no matter what. He said he would find a way to make life worth living and enjoyable, no matter how much, or how little functionality, or whatever his condition. How affirmative is that? This is clearly a man that loves life and appreciates life.

                So today, my uncle’s birthday, I celebrate my Uncle Joe, one of the true greats. I hope you have someone as dear and precious in your life, supporting you along this journey. I am so grateful to have him in my life.

In the Comfort Zone

             So much is written about stepping outside your comfort zone, and I wanted to talk about what it feels like when you are in the comfort zone. It’s wonderful! On occasion, the stars, moon, and sun align and all the world is one. It’s a warm, friendly place filled with a sense of peace. I am in the Comfort Zone often these days, and I work hard to stay there. I don’t know if I ever felt comfort as a Caregiver. On the contrary, I found caregiving to be an uncomfortable place. Hear me out, because this isn’t a rant or about complaining, it’s about taking on more than you think you can chew, where everything is new, and its one steep learning curve, where every day feels like an uphill battle. It’s a race against the clock to juggle a million appointments, a financial fright to balance the cost of the demands, and a mental game to stay focused and pull it all together. While making my Gramps comfortable was a priority, my own comfort wasn’t even a thought.

                I have been thinking a lot about how to create a Caregiver comfort zone, and I conclude there is no one-size-fits-all solution. My retrospective study on my own thoughts at that time can conclude I would’ve done myself, and probably my grandfather, a service by having more confidence. I believe confidence is one key ingredient in this comfort cookie! I was afraid of everything. Fear was the undercurrent of all my thoughts. I remember once running out of his lunch meat and feeling like it was a sign that things were out of control, and I if I couldn’t even get that right, there was no hope. Extending that thought, it continued that if I didn’t maintain the routines, even down to lunch meat, Gramps would die as a result. Yes, I really thought if I didn’t keep everything perfect, Gramps would die and it would be my fault. Crazy and counterproductive, I know!

                So my first suggesting for getting comfortable is to have faith it will be okay. Be confident that you can handle whatever curve balls are coming –and they are coming. You can’t control everything, and most importantly, realize that you do not have to control everything! Establish routines to make your life easier. Settle in, because you will probably be a Caregiver for a long while, so you may as well get comfortable. I will repeat the mantra I have been telling you in almost every post, find ways to make yourself happy and gives you peace.

                Caregiving is a huge leap out of bounds of the comfort zone. There are many lessons to be learned whenever anyone, Caregiver or not, steps outside their comfort zone, takes a step into the unknown, and forges a new path. It will be uncomfortable, this foray into the wild. Just remember, it is in the jungle where growth occurs. You became stronger, more resilient, and as you grow more confidence, you will obtain comfort.

Short and Sweet

           I just flew home on a red eye and am a bit jet lagged, so I will keep this short and sweet. I miss them. My Dad and grandparents, and even those that are no longer in my life, but are still alive and well on this planet. The empty sadness comes and goes, but when I am in Florida, it hurts the worst because it’s in front of my face that I am here, and they are not. Nothing I can do, but keep going. It’s not depression or debilitating, but there is sadness in the recognition that I will never be able to talk to my Dad and grandparents again. Well, I talk to them, but if they can hear me, which I like to believe they can, I cannot hear them. I envy people who have their parents and grandparents still, even in their 40s and beyond. "Life is short" is such a trite thing to say, but it is true. We only have 100 years to live, if we are lucky. The years fly by all too quickly. Make the most of the time you have. Make it sweet, because it’s all so short.

What Time's The Funeral?

           When my Gramps fell he was in Cleveland Clinic hospital for a while and then discharged to a local rehabilitation. He wasn’t doing very well, but I was faced with a discharge decision to take him home or rehabilitation, so that seemed like the obvious choice. One day, he was sleeping, and I was by his side with our close friend of the family Linda, when Gramps sat up, looked at me, and asked, “What time’s the funeral?” I was so scared, I said, “Grandpa! You’re not DEAD!” He kinda smirked and went back to sleep. Linda cracked up. She told me that he knows he isn’t dead; he was trying to make me laugh! I will never know what went through my Gramps’ mind in that moment, if it was medication or what, but I like Linda’s explanation –he was trying to lighten the mood and make me feel better. That would be a very typical thing my Gramps would do –always thinking about me and others.

                In this day and age, it’s so rare that people put others first and think of other people’s needs and comfort. My grandparents did that all the time. It was ALL about others. Always. My Grandma’s friend tells me that she would be in the area, call over to my grandparents that they were stopping by, and by the time they got to the door, she could smell her favorite foods already in the oven. That’s how it was done! Always have extra food on hand for when friends or family stop by, any time of the day or night, be ready, and make them feel special and welcome. Who does this anymore?

                I think there’s a loss of civility these days and a lack of consideration. My friend and I were going to another friend’s house, so I told him we have to stop at the grocery store first, because “we can’t go with our arms swinging.” He loved that saying! It’s one I heard often from my Grandma, but with her gone, it’s not one I hear anymore. It’s about being thoughtful and about consideration. People don’t seem to have the manners they once did.

I came across an old article in my Grandma’s things and it was from a newspaper in the 40s and it showed her mother with a nice china collection and everything in the article referred to “Mrs.” and dinner parties, and was all very polite and formal. Those days are gone. I am not saying I long for the formality, but I long for consideration and the respect.

Just for today, make extra effort to be considerate of the people around you, whether they are loved family, friends or just people from work or the grocery store. Anyone and everyone you meet. Hold the door open, hold the elevator, say “please and thank you.” Let’s be civilized. Don’t save consideration for the funerals.

Law and Order

             Gramps loved to watch Law and Order. Much like we had routine meal plans, we had routines when it came to the television shows he enjoyed. Some of our happiest times were just hanging out watching Steven Seagal movies or Lawrence Welk. Gramps loved to dance in his day, so we used to watch Dancing with the Stars and he loved it. Sometimes I felt it hard to sit still and watch that much tv, so on commercial breaks I would dust, clean-up something, anything to stay productive and keep order. The point of all this is that I believe television and movies play a part in our relaxation and entertainment, but it can’t be everything and it’s important to schedule in interactions with loved ones, friends, and other people.

                One of the things I loved about our aide is that she would play cards with Gramps. Not all the time, but enough that it mixed things up and he enjoyed it. We had friends that would come by for coffee or to drop by fresh baked bread and even the fig cookies Gramps loved so much. Our neighbors were great and kept Gramps company some times, and were always around to help if he fell. Our house had a pretty good amout of activity throughout the day.

                It’s not our job to entertain our loved one, it is our responsibility to be the law of the house and keep order when it comes to their well-being and working with all the providers and aides. Someone told me it wasn’t my responsibility to worry about Gramps’ happiness. I am sure many caregivers feel if their loved one is safe, they have done what they need to do. I felt like that wasn’t enough because I loved my grandfather, and always was concerned with his mental health and well-being. I didn’t want him to be placed in front of a television and forgotten about for hours on end, just sitting there. It was hard, but I found ways to make sure there was always interaction and things going on. It takes effort, but I think Caregivers should strike that balance between tv-time and other activities, even if your loved one is like Gramps with limited mobility. Healthy mind, healthy body connection is important.

Big Rocks

                My girlfriend and I have been talking about our “big rocks”. These are the priorities, the things important to us, that we put in our jar first, and then add the pebbles, and onto the sand and pack it all in to our lives. What are your big rocks?

                Big rocks can’t be things. For me, big rocks are about the people in your life that you make a priority, and make time to be with because they are important to you.

                Tonight was my girlfriend, Peggy’s birthday. A group of us got together, went out to celebrate her life, her birthday, our friendship. It was special indeed. Making this time was a satisfying big rock added to my life jar.

                Not all my rocks are fun and games. I have a job. It takes a lot of my time and energy, so, it’s a big rock. That gets added.

                From there, it’s about family, friends and making time for all of it. Into the jar it goes.

                We all have choices to make about what we add to our jar, how we spend our time and energy, and how tightly we pack it. We all get the same hours in a day, but how we spend them is individual. To be honest, these days, my jar would look more like a well thought out terrarium. There are plants, and sand, and it’s pretty simple. Well-spaced and organized, with a zen-like quality. This was not always the case.

                As a Caregiver, my life was packed full, with so much, no real focus. I filled it up and just when I thought I could add no more because it was overflowing, I packed it some more with grains of sand. I was like that commercial for the army where they get more done before 4am than most people do all day – can you relate? My jar was a mess and it wasn’t pretty.

                There is no one-size-fits-all plan for defining your priorities and making time for them to the point where they go into the jar first, above all else. It takes thought and planning and effort. Take some time to reflect on the big rocks in your life and figure out how to cut back on all the rest to make time for what you value. You’ll be glad you did.

Caregiver Combustion

               I’ve always been a good girl. I didn’t get in trouble in school, was a cheerleader with decent grades, generally liked. Same thing professionally, I have a good work ethic, and have been fairly successful. I feel I have to preface what I am about to tell you with this background information so you understand. When I became a Caregiver, there was this one time, well, I almost went to jail.

                I was feeling tense, I couldn’t tell you what was bothering me, but I didn’t feel well and thought a walk would clear my head. As I was walking, I started to see hundreds of papers swirling across the street and onto the grass. It was as if in a dream, where there just seemed to be paper everywhere. Could someone have thrown this out a window? I didn’t know what happened, so I started to pick up the paper. I saw it was all on a local hotel’s letterhead. You know what, I am just going to tell you because it serves them right – it was the Bonaventure Country Club. As I was cleaning up, I got angry. So I decided to pick-up as much as I could carry, I went home, got into my car, and drove to the hotel, where I proceeded to dump this paper on the front desk.

At this point, I was upset, but I was maintaining. I asked to speak to the manager. When he finally surfaced, he basically shrugged it off and was like, “I don’t know what you are talking about and what do you want me to do?” Now I can feel the anger building. So I told him I wanted him to pick up the paper. He denied any responsibility, and further, he had no interest in taking corrective action. There’s a clue into the crux of the issue. When I tell you, I went into a rage. I could have killed him. I don’t know how they didn’t call the police, because they said they would if I didn’t calm down. I was hysterical, crying, shaking, the whole bit. This was all new to me.

                When I finally composed myself, I had to question what was going on in my head, because I pride myself on being able to stay centered and maintain composure at all times. I was clearly cracking. The real issue here that made me crazy was the manager refusing to take responsibility and be held accountable. If you have been following this story, you know my Gramps has two daughters that did not take responsibility for his care. I didn’t realize how much this weighed on me because I told myself I wanted to help my Gramps and we were doing okay. In truth, there were days I resented it. I resented how much pressure my Dad was under when he took care of Gramps before he passed, and I resented that my supposed very close Italian family didn’t pull together. There was a lot lurking for a long time, and this poor hotel manager bore the brunt of it all.

Much like my aunts dodged their responsibility, I dodged a bullet that day without getting myself into a lot of trouble. Do not let yourself get to that point. There is no need to get so frustrated and upset that you explode. Seek help. Ask for help. Get respite care. Figure out how to make that happen. Talk to a professional. Let it all out and don’t take it out on your loved one, yourself, or others. Find a healthy outlet for whatever you are feeling.

The Green Caregiver

              For Earth Day, I wanted to write about environmentally-friendly Caregiving. Some of you reading this may already be thinking my promoting keeping it green is not keeping it real. There are so may products involved with caring for the elderly, a lot of disposable goods, and I can honestly say it isn’t easy to be environmentally friendly, but here’s a few tips.

                First and foremost, keep your loved one’s environment clean and almost sterile. If your loved one has a compromised immune system, that can put them at risk for all sorts of health problems, including infections like Methicillin-resistant Staphylococcus aureus (MRSA). Most stores sell environmentally friendly cleaning products, but you don’t even have to buy those if you have some simple basics in your home, like vinegar, baking soda, or lemon juice.

                I am ashamed to admit how dependent I was on paper towels, but I made a conscious effort to use dish rags whenever it made sense to do so. It saves some money as well, if you can become less dependent on disposable items and use recyclables like towels. This tip is not always so easy in practice, but if you keep a towel around to wipe down counters and the bathroom, you will reduce the paper products you use – the trick is to keep the rag or towel handy so it’s the first thing your each for instead of the paper.

                Another idea is purchasing “chops” for the bed. I used a pad underneath that had a plastic liner and was disposable, but since the chops were on top, they were so absorbent that many times I could just throw them in the wash and reuse them, and recycle the pads underneath for a number of uses.

                Another great way to celebrate earth day, is simply to get your loved one outside to enjoy some fresh air. Gramps enjoyed sitting on our screened patio out back and listening to his portable music or reading the paper (and we always recycled newspapers). We would even play cards out there, just to get some sunshine and Vitamin D and fresh air. If your loved one is up for it, take a walk and just enjoy the outdoors. Enjoy Earth Day!

No Watch Day

               Caregivers are clockwatchers. There are so many appointments and deadlines, from seeing doctors, to paying their bills on time. On rare occasion, when you have free time, take the time to do something for yourself to make sure you practice good self-care. On the rare “days off”, I like to wing it and do what I want, when I want. I call these precious times, “no watch days.”

                Today was a no watch day for me and my girlfriend. We got up, made a good breakfast, and hit the open road Thelma and Louise style. We had a destination in mind, but decided to reroute and have a nice lunch by the harbor, do some shopping, and then end the day with more cooking. It was an A+ day all around.

                When I took care of Gramps, I didn’t have many of these types of days, where I wasn’t on a schedule, and did not need to be any particular place at a given time. When these opportunities did arise, I took full advantage and savored them. Like a dieter that indulges in a chocolate treat to be savored, it’s a delicious day indeed.

                I am in a happy place and I can afford many no watch days now. For Caregivers in the thick of it, I would suggest whenever possible to try to use the Mon-Fri routine to structure your time around the “have-to-dos” and try to find time on Sat or Sun to be looser, freer, and maybe even find time for fun. We all have our things to do list, but it really is important to find a way to let loose and allow yourself some time to breathe. Relax. Be calm. Quiet. Enjoy your life. I don’t know what those words mean to you and how you will define relaxation, calm, quiet or enjoyment. Whatever the means, at the end of the day, find a way to be fulfilled. Watching the clock and worrying every minute is no way to live. Take your watch off, take your shoes off, take a deep breath, and find your fun. You deserve it. You’ll be better for it.

The Great Mystery

            I work in healthcare IT for prestigious, large, healthcare organizations and have been at this for about 20 years now. Business is booming thanks to implementation of electronic medical record. My work involves understanding the world of healthcare benefits offered by insurance companies, government agencies, and employers, from clinical and care delivery, through revenue and financials. I dabble in the patient access side of the house, but live in the revenue management house, so I often hear the words, “No money, no mission.” Meaning, if there is no money for hospitals and doctors, they can’t carry out their mission of patient access to quality medical care. Healthcare reform is a huge focus these days. I often refer to how patient’s, specifically the elderly ones, elect healthcare benefits when choosing a Medicare HMO as “the Mystery”. I refer to the conundrum on how to fix America’s healthcare dilemma and provide quality medical care, efficiently, and make it affordable to the masses as, “The Great Mystery.” There are no easy answers to this quagmire.

                 Positive changes have already come of some of the healthcare initiatives. With wider coverage and better benefits, particularly around preventive medicine, I see a trend moving away from “cash only clinics” to billing insurance companies for services that were not previously covered. Birth control is an example of such a service. I also see this for things like travel medicine where people going overseas need vaccines, and historically, these were cash-only services, but are now covered benefits.

                I see positive changes for COBRA benefits and around healthcare portability. Preventing insurance companies from disqualifying people based on pre-existing conditions is another positive change in recent years.

                I see initiatives for moving the population away from “self-pay” to getting people benefits through state-funded programs like Medicaid. The challenge here is that I don’t see an increase in Medicaid funding and that is a concern. If more people are added to the pool, where does the money come from to support this initiative? With states like CA bankrupt, and the federal government $3 trillion in debt, I don’t see this as well thought out plan. Cuts to other programs are a certainty.

                We should all be concerned about healthcare in America, and the plan for the future. With the elderly population expanding, the increase in Alzheimer’s disease, epidemics like autism, and other real healthcare issues facing us, we all need to be concerned and be paying attention.

                I don’t have the solution in my back-pocket to solve America’s healthcare crisis, so sorry, I haven’t solved the Great Mystery. It is one that I am actively following in the news and reading diligently. It impacts all of us. It has great impact on Caregivers and their patients, and we need to stay on top of the changes.

Move Along

             It’s hard to be friends with a Caregiver. For starters, the time we have for friends and fun is limited to say the least. We have a lot on our minds. There is a heaviness that is inherent in caregiving, and that isn’t easy for our friends and loved ones to understand. We lose interest in the frivolous because our reality requires we deal with some pretty heavy stuff. We think about death –a lot. We spend more time with doctors and nurses than friends and loved ones. You get the picture, it’s pretty bleak. To the fair-weather so-called friends, I simply say, if you don’t like what you see, than don’t look. Move along.

                I actually never said that to anyone, but believe me, I wanted to on many occasion. If I get real honest, so many people are no longer part of my life, that I wish in retrospect they moved along a lot earlier than they did because it would’ve been more honest and authentic for all of us.

                It’s uncomfortable to be friends with a Caregiver because we are all mirrors for each other. Caregivers are a glimpse at the future, one most people do not want to see. The truth is that most everyone will experience caregiving in some way, shape or form, at some point during their lifetime. Some experience caregiving earlier than others, and more to the point, earlier than the others around them care to face. We are creatures of comparison, and when we see someone taking care of their loved one, it doesn’t necessarily inspire, but sometimes it evokes fear of the future. It’s scary. “If caregiving could happen to them, it could happen to me.” No one wants to face adversity and when they see what we deal with, they don’t want to imagine it for themselves.

                There is a bit of advice I want to give you and I don’t want to dance around it. For those that stick around and remain your friends through this time, they are keepers. There are many other so-called friends that just can’t deal with it. Don’t desperately try to hold onto something, just let the relationship go. Let it go wherever it needs to go. It’s hard. You will go through anxiety, and concern, and try to hold on. You will try to make time, pretend nothing is wrong with your life, attempt to “feel like the old you”, make small talk, and so on and so on. That only prolongs the inevitable, which is that your life is different and the people around you, that love you have to accept that, and your relationship needs to adjust. If the relationship is not flexible, and is no longer working, don’t contort yourself or the relationship and try to make it something it is not. Let it go. Let them go. Wish them well. Move along.

Dick Clark (November 30, 1929 – April 18, 2012)

            Sometimes we hear of a celebrity passing, and we think, oh, that’s too bad. It’s different with Dick Clark, in that all of America feels sad today and is paying their respects to a true American icon. I would like to pay tribute.
  

             Dick Clark made his way into the hearts of Americans, and really was like a friend – we felt we knew him personally. He launched the careers of so many famous artists. Everyone talks about how he was a gentlemen and a hard working professional. It's hard to believe he worked for over 50 years in television, because he looked so young, and was often called America’s Oldest Teenager. Lesser known, Dick Clark was a great patriot. It’s been said that he raised and lowered the flag every day, properly folding the flag every evening. He inspired many, continuing to work even after his stroke, saying he wanted to work till the very end, and he got his wish.

             Years ago, Dick Clark was asked what made American Bandstand so successful, and he simply said, “I played records. Kids danced. America watched.” Beautiful. Rest in peace, Dick Clark.

Phone Fun

I am being facetious because there is nothing fun about phone calls with insurance companies, Medicare, Veterans Administration or even healthcare providers. I already told you a little about my first call to Veterans Administration in “The Inquisition”. Once you actually get past being qualified to speak to the representative in regard to your loved one’s information, then what? Here are a few suggestions.

First and foremost, don’t be in a rush when you make the phone call. Allow time for being on-hold, being qualified, and figuring out the right person you need to speak to. Most of the time you will need to go through some kind of automated system and press various buttons to even get to speak to a human being. Be patient. If you think the call should take 15 minutes, give yourself 45 to allow for all the unknown variables that are sure to happen. You are sure to be transferred a few times.

Plan ahead and make sure you have all the documentation you need at your fingertips. I already mentioned that when you call Veterans you need to know your loved one’s branch of military, discharge date and other military specifics. Have the discharge papers readily available. When you call the insurance company or Medicare HMO, have your loved one’s card with policy ID ready. Years ago they used to ask for social –and they may ask for the last four of your loved one’s social, so commit that four digit number to memory, and memorize their date of birth.

Other information to have available is the Explanation of Benefits if you have questions on coverage information and if you’re being billed from your doctor and you don’t understand why your benefits didn’t cover the charge amount.

When you finally get someone on the phone, take your time. It goes without saying, but be respectful and do not get frustrated as they will not help the situation. Take notes and be sure to write down in a notebook the date you called and the name of the person you spoke to. Some places actually give you an ID number for the representative and they may give you a reference number for the call –write it all down. They should be documenting in their system notes on the call as well.

Typical questions will be the date of service, which is the date you saw the doctor, nurse or generally received care, the name of the provider, and some information about the service –was it an office visit? Lab? MRI? They may ask diagnosis, but that isn’t too common. They will probably ask the charge amount.

Once they look up your information, be sure to ask them why they paid what they did and why they disallowed whatever amounts they did. Be sure you understand your coverage and benefits before you hang up. If you do not agree with their payment or determination, appeal to them to review the claim and reprocess it. They may ask you for medical documentation to support the claim before they will reconsider, but ask them what they need. If they tell you there is nothing they can do and the claim was paid appropriately, ask them what your appeal options are to get them to reconsider. You may need to write a letter and send documentation, but ask specifically where to send the letter, if there will be a case worker assigned that you can contact directly, and how long it takes for reconsideration. Be polite. Be clear. Get results.

Italian Fairytales

             My Grandma told me that St. Therese of Lisieux, also known as “the Little Flower”, was our family patron saint, and if I prayed to her, said the novenas, she would shower me with roses, to let me know my prayers would be answered. I am not sure if this is an “Italian-American thing“, or if American children hear such stories, but I love St. Therese and I believe. I have only prayed to her for intercession a handful of times, but I am telling you, the most random roses would appear, and my prayers were answered. I am reading her story, the Story of a Soul, and I find it inspiring. St. Therese said, “What matters in life is not great deeds, but great love.”

                Caregiving is not about doing a great deed, it really isn’t. It’s about great love. I’ve heard stories where a Caregiver’s motives were questioned, was he doing it for the money? Or was she doing it out of guilt? I can tell you firsthand that there is only one reason alone to do what we do, and it is simply love. Even if someone became a Caregiver with ulterior motives, maybe money or otherwise, I can assure you that they wouldn’t be able to last a minute. Love overcomes and any other motive could not sustain. It’s just too hard!

                If you’re intention is to do good and you make the effort every day to get up in the morning and be the best you can be, take care of your loved one, and do the right thing to the best of your ability, everything will fall into place. God is on your side and will meet you half way to move mountains to make sure you have what you need to get through all of it.

                I believe in the power of prayer. You don’t have to believe in saints, or even God or Jesus, but I have always had faith in a higher power that guides my every decision and helps me navigate my way through life, and that faith has pulled me through a lot of dark, challenging times. God works for me. God works for you too.

Autism Awareness Month

           April is Autism Awareness month and I thought I would share how this disease has affected our family. My cousin, Cheryl, has a daughter, Tori, that is autistic. Autism is more prevalent in boys, but when it manifests in girls, it’s usually more pronounced. That is the case with our Tori. Cheryl is an extraordinary mother. She doesn’t think so, but trust me, she is special. She has done everything to help Tori get to the level of functioning she is at, and they aren’t done. Its endless therapists, teachers, vitamins, supplements, special diets – you name it, they are working it, and they have been early on in Tori’s development. Cheryl and I are both Caregivers, but in different ways, and something we talk about is how, when you are a Caregiver, you are always “on.” Always in first responder mode because you never know when a problem is going to happen and you have to be ready to react. There is never down time and you never get to relax.

                I used to manage a systems support team for a large hospital chain (43 hospitals!) and I had to put together the “on call schedule” which basically listed the responders in the event there was a system issue off business hours. We were a small and lean team, so the analysts were on call often. They hated it. I didn’t get it. In my mind, since it was so rare that they were actually called to duty when on call, I didn’t understand why it would be an issue for them. They explained to me how they always had to plan ahead to be sure to carry the work phone and have the laptop available and be close to Internet connectivity and that planning was a real kill-joy on weekends with the family. When I became a Caregiver, I got it. You’re always on duty.

                I was lucky in that there wasn’t too many times where my Gramps fell or we had real issues resulting in my getting a call. Regardless, I was on-call 24 hours a day, 7 days a week. Just worrying about when I was going to get that call was always present, weighing on my mind. It was heavy.

                It would be easy for me to tell you not to worry, to relax, and live in the present rather than spend time “futureing” and worrying about getting “the call.” You can work on trusting that your loved one is safe, and replace negative thinking with reassuring thoughts that it will all be okay. I don’t know what will work for you to not carry this heavy weight of worry. I can tell you this from experience, and that is simply, odds are that your worst fears will never happen and it really will be okay. If you do get that call, you will manage. You will figure it out and deal with whatever you need to work through. It will be okay, trust, have faith, believe, and do what you need to do to make sure your loved one is well cared for and safe. That is all you can do, and all you need to do.

A Soufflé Rises

        Tonight, I had the pleasure of spending time with my good friends, and after dinner, my girlfriend made us chocolate soufflés. They were delicious! We watched as she whipped the egg whites, and melted the chocolate, carefully folding to get the right airy lightness, and then onto the baking and whipping cream. This is her signature dessert, and she has made this for us before (happily!). When she sat down to eat, she asked if we thought there was anything hard about what she did. She gave the recipe to a friend who said she would never make anything that hard, and she couldn't understand it. The recipe is not difficult per se, but there are a number of steps, and there’s the whole whipping egg-whites-thing. My girlfriend thinks it’s simple. It got me thinking that sometimes, what one person thinks is easy and not a big deal, another may find quite challenging. Some people will make the effort and rise to the challenge, and others will not brave it.

It also got me thinking about the Paul Keating saying that a soufflé doesn’t rise twice. Usually, this saying means you only get one shot at whatever it is you are trying to accomplish, and once the fall happens, there is no getting back on top. Human beings are more resilient than that, and we have great capacity to rise, fall, and rise again. Although, when the challenges are health-related, it’s another level, and things can look quite different and even bleak.

                As a Caregiver, our loved ones have good days and bad. Their health falls, to rise again, and this cycle repeats. Caregivers also have their good days and bad, and spirits rise and fall depending on the challenges faced. It’s easy to understand the factors that contribute to the fall, deteriorating health and sickness, but not as easy to pinpoint what contributes to the rise. Why do some rise time and time again? Up for the challenge, and overcome, and others do not? Some people heal and get better, others do not.

                There’s no recipe that can spell out for us the ingredients and steps that contribute to someone overcoming challenges. Sometimes it takes someone willing to make that effort and have access to the right ingredients that can be pulled together and whipped up to achieve great heights. Sometimes it takes help from another, doctors, nurses, and loved ones, to overcome. In life, the fall happens, and there always is a downturn. How do you react? Can you salvage the day and make the best of what you’ve got? How do you react when it’s health-related? I hope you get all the love and support you need to help you rise above all your challenges.

The Inquisition

              If you have never called Veterans Administration with a question on appointments, benefits, or medications, get ready to answer some questions. In this day and age of HIPAA privacy laws, healthcare providers and agencies can never be too careful to ensure that your medical and personal information is protected. Release of Information (ROI) is very delicate subject, and has many considerations, and I want to make sure you are prepared for what I like to call “the Inquisition.” If you are calling any provider or agency, be prepared to answer personal questions about your loved one, so they can qualify you and the patient, and be certain you are who you say you are before they tell you anything. Also, be aware that just because you have legal documentation on file, like Durable Power of Attorney, that may not be enough to get the information you need.

                My first call to the VA was an education. I was on hold for a while, but when they finally picked up, I was not at all prepared to answer their questions. These included the branch of military Gramps served (easy), and my favorite, date of military discharge (hard one). So, I take the phone over to Gramps, put the deafening tv on mute, and try to explain to him that VA needs some information from him to even speak to me. He hates the phone! I had to translate from the VA asking the question to my Gramps because he didn’t hear so well, and the VA lady is like “don’t lead him to the answer, I need to hear from him.” OMG! Here’s a tip, keep the military information, honorable discharge papers with branch, years served, ID number, and date of military discharge handy. You will need them to deal with VA, and, if you are planning a military funeral, you need them for those arrangements as well.

                I am not a lawyer, but here is what I learned, there is Power of Attorney and Durable Power of Attorney – you want the Durable POA. You also need to read the language and be sure you understand what is included, and maybe more importantly, what is excluded. Some agencies will also require that you sign their legal document or they will not speak or work with you even if you provide the POA. I know the Medicare HMO we worked with, as example, required Healthcare Surrogate documentation in addition to the standard “packet of particulars” I routinely provided. HIPAA privacy statements are common practice, with some places wanting annual signatures and others collect routinely at each appointment.

                Bottom line, it’s their game, their rules, know their rules, and abide by them. If they tell you they need to hear answers from your loved one, need their signature, even if only an X like Gramps, need certification, witnesses, whatever, just play along and save yourself undue aggravation. As they say, you can’t fight City Hall, so don’t try. Just be prepared as best you can, prepare your loved one, and get what you need.

My Attorney Told Me...

There are mixed opinions here, but I can only give you my experience, and simply, I recommend you get an attorney. Day one. Don’t wait or hesitate. There’s a lot of paperwork involved with taking care of your loved one, and you may be able to figure it out, particularly in this day and age with the Internet and sites like LegalZoom with ready-made forms. However, for me, I went to an elderly planning attorney and I thought it was well worth it. It’s not cheap, no doubt you pay for the services, but I needed guidance on how to navigate “the Particulars” (this is what I call the tsunami of paperwork that hit me), and other aspects of caregiving when it came to banking and irrevocable trusts, the Will, and even tips on applying for Medicaid. My attorney gave me direction on all of it. In addition, Gramps had a condo I was trying to sell so that was another gray area and she recommended something called a Personal Service Agreement, something I had never heard about and I would never had known about if it weren’t for the attorney. We had a lot going on and I didn’t want to do anything wrong, so for peace of mind alone it was worth it to seek professional legal help.

The other thing the attorney offered, was that, if there was anything uncomfortable, between the family, or even outside the family, she said I can always use the phrase, “my attorney told me…” Further, she said, particularly in regard to family, if they had any questions they could call her directly which would remove me from being the middleman and can be useful to avoid unpleasant conversations. I didn’t have to take her up on that in regard to family. However, I can share that when I went to the bank and completed the paperwork, it helped to have that direction from the attorney already in my back pocket, because I knew what to say and ask. I also think referencing an attorney has weight and makes things seem more official to others.

Inadvertently, the attorney gave me an interesting tidbit of advice. Whenever things get uncomfortable, make it easier on yourself, by referencing the expert. I think this is useful, not just with legal-ese, but if someone is questioning why you have your loved one on a certain medication, or certain medical protocol, rather than get into a long discussion, simply, “the doctor recommended it” should do the trick.

I am not suggesting that you take the “passive approach” and pass the buck by “blaming” a decision you made on others all the time – not at all. There will be times when you have to say, this is what it is and that’s it. There are other times, when you want to end the conversation and not debate, so referencing an expert can help shut that down. You’ll know when to use these ready-made catch-phrases. Use sparingly, like a spice, or they lose their potency.

Meal Plan

              I am working in Los Angeles these days, the land of the beautiful, so it seemed only natural to speak to a nutritionist. The nutritionist advocates eating the same or similar things every day. I was surprised. I thought variety was important to a good, healthy diet. Apparently, the new thinking is that variety is what leads to making bad choices and overeating, whereas sticking to a regime promotes good health. Who knew?

                My Gramps was on a good routine when it came to eating times, but his diet would fail all dietary guideline standards. My diet at that time, when I actually could bring myself to eat, was pretty much centered around whatever my grandfather was eating. I made a schedule and rotation for meals to make it all more manageable.

                A typical day would start with coffee (with fiber added), eggs with waffles or toasted pound cake that he called “toast.” Yep, you read that right, toasted pound cake –for breakfast!

                Lunch consisted of hot Panini croissants with ham and cheese and iced tea. There were always snacks like pretzels or graham crackers, too.

                Dinner was a problem. The regular rotation included salad (always iceberg lettuce, tomatoes, no dressing) and fresh fruit for dessert. The entre varied, sometimes rotisserie chicken from the deli, and I would grill vegetables like zucchini or squash, or make some corn or peas. Pasta was easy and that was fairly regular as well, whether it be pasta e fagioli with beans, ravioli, or linguine with clams (I cheated and used the store-bought clams from the can, but when his daughters visited, they kicked it up with clam juice and other ingredients and he loved it).

Gramps loved hot dogs, so I kept them and hot dog buns in the freezer. I remember once, I bought low-fat turkey dogs, thinking we could be healthier (he was already in his 90s did it matter?!). Gramps took one bite, made a face, and asked what he was eating? I almost laughed but I didn’t want to tell him it was low-fat, so I said I bought the brand that was on-sale. He was told me to never buy him food on-sale again! That was funny!

                Sometimes Gramps would complain about the food, and admittedly, I found it frustrating and even insulting. However, I learned that the taste buds dull over time, and medicines can change the taste of foods too. I realized it wasn’t personal, and as a backup, I always had chicken soup ready. I also treated us to take out from the local Italian joint, and we would have spicy seafood diablo, his favorite!

                Get yourself and your loved one or patient into a good routine when it comes to eating. Know the times you plan to eat and try to have a set menu rotation. It will help make food shopping more bearable and will help you manage the “what are we eating” routine. Keep soup, frozen vegetables, and even breads available. It all helps.

The Demonstration Project

I just saw the interview with the CEO of a Nevada hospital who had to make the difficult decision to shut down their oncology department. After 20 years, 40 patients per day, they closed their doors. Cancer patients have nowhere to turn. They are scared. The CEO is saying this is happening in every public hospital across the country, but UMC in Nevada is the “demonstration project.” I don’t like what we are demonstrating, America.

Patient Access to quality medical care, regardless of ability to pay, is fundamental. It takes money to run hospitals and clinics, have modern equipment, and pay the doctors, nurses and medical providers. These competing priorities are at odds and its clear who is losing –patients.

The rich can pay for care. The poor will qualify for some kind of assistance and get care. The middle class is in trouble. We can rely on insurance and benefits, but when those run out, then what?

The hospitals are not the bad guy. The patients, certainly, cannot be blamed. I used to blame the “evil HMOs” but, really, it’s not their fault either. We need to examine the system. Healthcare reform is a big topic of conversation these days. At the end of the day, what do we want?

We want to have access to medical care when we need it. Do you know that if you are in a severe accident, whether you live or die can depend on the vicinity of the nearest trauma unit?

We want that care to be “best practices”, effective, efficient, and based on tried-and-true scientific expertise so we have the opportunity for the best possible outcome –a full recovery.

We want to be able to afford that medical care and not worry about finances on top of worrying about the medical decisions we must face.

We want hospitals to be able to afford to provide care to the community, and we want them to have the latest and greatest technology available, be clean, and well maintained. We want our medical providers to have a reasonable patient practice where they can spend time explaining to us what we need to know about our health and not be rushed to get to the next patient.

We want to trust our insurance companies that our benefits are adequate, will provide the coverage we need, when we need it, without a lot of strings attached to get referrals and authorizations, and without necessitating a fight for payment.

We can do better America! Let’s demonstrate our vision of a healthy America, with a viable healthcare system that supports its citizens and communities. Whether you agree with the healthcare reform on the table, or not, the bottom line, change is required. We have to figure out a better way, something that does not financially devastate our country, while ensuring our citizens get the care they deserve. This is America, the greatest country in the world, and I know we will work through this mess and re-invent our healthcare system. The vision is a healthy America, let that be our demonstration.

Grandparents Parenting

My Gramps helped take care of me when I was little because my mom died in labor, and my Dad, still in his early 20’s moved back home to his father and younger sister, my Aunt Grace. I was so young that I do not remember a lot from that time, but I remember the love quite clearly. Gramps would let me drink big-girl coffee, which really was milk with a splash of coffee in a mug so I could pretend to be grown up. I remember he placed great importance in me practicing writing and even math at a young age. He always made me feel loved, wanted, and safe. I think it is extraordinary when I think about that time, because this was the early ‘70s, and Gramps was a single father, still raising his youngest daughter, had his son back home, and now had his granddaughter. His wife had died, my mom had died, and I am certain this was not the life any of them envisioned.

Yesterday, I made the various Easter calls and one was to my Dad’s ex-wife who is helping take care of her grandson. She was exhausted. Her daughter was still in college, so she is trying to get her daughter through school, and keep her grandson out of daycare. She says she doesn’t want someone else raising her grandson, and doesn’t want him to be in someone else’s care before he can even talk. I can understand. Thank God her daughter has a mom like her to help out.

Grandparents raising their grandchildren is fairly common. Even our own President Obama was raised by his grandmother for a period of time. Grandchildren taking care of their grandparents is uncommon. My choice and situation was definitely unique. My cousin tells me it’s “unnatural” given that my Gramps had two daughters that could have done it, and further, he tells me that I disrupted the “pecking order.” The choice of words makes me laugh.

In a rather odd, ominous moment before my Dad died, I asked what I should do if God-forbid he were to die before grandpa. He laughed, and told me to ship him to his sister’s house. When I assumed care of Gramps, I could almost hear my Dad yelling at me from heaven, “No! No! No!” Why listen now?

Today, I have Grandparent-parenting on my mind. God bless those that can do it. It must be tough. At an age where you think you are down, you start over. I am sure the parents reading this are probably put off and would say, “I am raising my child and the grandparents only help out.” That may well be true. Every family situation is unique. However, I definitely see grandparents taking on a much more active role in caregiving for their grandchildren. This is driven in part by the economy and demands of a two-working-parent household and the expense of raising children today.

My grandparents were a constant and consistent source of unconditional love. When I took care of Gramps, I felt like we had come full circle, and I was returning the love he, and my Grandma, gave to me. I love the bumper sticker, “God couldn’t be everywhere, so he made grandparents.” Amen.

Happy Easter!

              Easter was my favorite religious holiday when I was little. I loved it even more than Christmas. I think it had to do with spring and the tradition of going to get a new Easter dress with a bonnet and gloves. My love of shopping started young! I also loved dying Easter eggs and of course, bunnies, chicks, and baskets. There was Easter egg hunts where we would find pennies in the eggs and if you found a quarter, you were rich! My love of chocolate is right up there with shopping, so again, another aspect of Easter that I adored. Chocolate bunnies in Easter baskets, filled with colorful eggs, and leftovers made into egg salad sandwiches - what’s not to love? I even enjoyed Easter Sunday mass, and really the services leading up to it, like Palm Sunday, because my Grandma would make me a cross out of the palm leaves. I also appreciated the end of lent, because I used to try to give up chocolate for lent as my sacrifice, but it never lasted long, and when Easter came, I could indulge without guilt.

                I have many happy memories of my Dad and me celebrating Easter with the family. There was sunrise service on Hollywood beach to kick-off the day. Once year, my Dad and I decided, rather than do individual Easter baskets for my younger cousins, we did LAUNDRY BASKETS, one for each family, filled with chocolate and marshmallow and all sorts of good stuff! That was awesome!

               Now, Easter means something completely different to me. I believe in sacrifice and I have faith that we will rise from whatever crucifixions we face. I believe that we can overcome all our fears, because Jesus overcame man’s greatest fear - death. I believe we were given the gift of eternal life, it is a gift we have right now, and on the moment of our physical death, we claim it. The gift of eternal life is a promise, that someday, I will be reunited with my loved ones. Their souls live on. We will all be together again. This is the promise of Easter and I am grateful. Thank you, Jesus. Happy Easter, everyone!

The Pyramid

          I always knew the day would come where I would be visiting my Grandparents at the Pyramid, but in my opinion, that day came way too soon. I should explain that “the Pyramid” is actually the Forest Lawn South cemetery and it has a pyramid shaped mausoleum. It’s located right off our main highway here in South Florida, so if you fly into Fort Lauderdale airport, you can actually see it from the sky, and of course driving, I pass it often. When my Dad and grandparents were still alive, and I drove past the Pyramid, I would remind myself to stop off at their exit and visit with them because I know “thee day would come.”

Before my Grandma passed, once day we were chatting, and I told her I loved her deeply and not to be mad when she was in heaven that I wasn’t visiting her grave as I had no intention of getting upset at a cemetery because I didn’t believe in it. She said she didnt care because I was visiting now. Having said all that, off I go to the cemetery, and ironically, I find it comforting.

                I visit them daily in my thoughts and I tell them I miss them and love them and they are not forgotten. Every other month and during birthdays and holidays, I actually go to the Pyramid to visit. I try to not to go on the actual holiday-day because that is very crowded, and in my opinion, just too depressing seeing other mourners paying their respects.

                I say my prayers, and I chat with them, updating them on whatever is going on with me and reassure them that life is good here, although sad they aren’t here to share it with me. I actually walk from my grandparents’ grave in the front, to my Dad’s grave in the back wall. I imagine they are together in heaven, but somehow that mimics what I would do in real life. They lived in condo buildings across from each other so I used to go from one home to the other when they were alive – I kind of do a similar route today.

                I often cry. I think I cry more now than I even did at their funerals where I felt pressure to be stoic and stay calm. Between the tears and sun in my eyes, their markers get blurry. There’s always a moment where their names almost disappear, and I imagine that I will wake up from this nightmare and they will still be here. In a blink, the sad reality is restored.

I don’t know why I even cry. They aren’t in the graves. I know this to be true. I believe in heaven and the afterlife, but when I am at the cemetery, while I feel close to them, I am sad they are no longer with me on earth. I think about times we shared and special memories and it helps. Tomorrow is Easter Sunday. Enjoy the time you have with all your loved ones and friends. Make good memories because there will be a time when you will rely on them for comfort.

Good Friday

           My cousin Cheryl shared this parable, and it’s one of my favorites, so here is it is, in honor of Good Friday. A man was complaining to God about all his problems and how heavy his cross was to carry. So God told him to come into his cross room, lay his cross down, and choose another. In the room, the man saw crosses of all sizes-big, small, sky-scraper size, but in the corner was a tiny cross. The man asked, "God, can I choose that one?" God replied, "Sure, that’s the one you came in with."

The moral of the story is obvious, that problems come in all shapes and sizes and as heavy and big as our problems seem to us, rest assured, there are bigger, heavier problems out there. Good Friday is as good a time as any to reflect on our “crucifixes”, the crucifixion of ourselves and others, reflect on the weight we carry, and our perceptions of it all.

The other morning as I was waiting at the hotel, a woman in a wheelchair came out into the garage. She wheeled over to her car, opened the trunk, and proceeded to work with the harness on a pulley system to get her body hoisted up, lift her wheelchair and secure it in the trunk, and manoeuver to the driver’s seat. In the process, she dropped her keys, so I went over and picked them up, handed them to her, and asked if I could help her at all. She looked at me, almost confused, which confused me, and politely declined my help. While I know she realized I was just trying to help, she really looked at me as if to say, “Do you need help getting into YOUR car? No? Than why did you presume I needed help getting into mine?”

I went back to wait on my ride, and my valet-friend said he tries to help her too, but she never accepts, and does it all on her own just fine. I was in awe of her independence, but I admit I welled up a little just watching her go through this rigmarole to drive to work. I admit that I felt sorry for her. It’s not spiritual, but there you have it. I chastised myself for my thinking. I was wrong presuming I knew anything about her life and the cards she was dealt just based on her being in a wheelchair, and worse, I was wrong for feeling sorry for her. How dare I presume that just because she is physically challenged that her life is lacking! That “handicapped” lady may actually be happier than me! Her physical cross may be heavier, but we’ll never know about her emotional cross and overall quality of life.

Going back to the parable, what would your cross look like to you? Our problems are always vivid to us and our crosses seem like heavy, tall skyscrapers. Comparing our problems to others is pointless, but on Good Friday, just for a moment, realize God never gives you more than you can carry, and yes, there are always others out there with bigger problems than your crosses.

Big Regret

               I caught a show called “Storage Wars” and I have to admit, at first, my reaction was a confused, “what is going on here?” There’s a whole industry that revolves around what happens when people do not pay for their storage lockers, are in default, and the lockers, filled with what appears to be junk, are auctioned off the highest bidder. (Some of those storage units are a mess and it’s always a shock when they find valuable things!) The cast of characters in the show are “the Collector, the Gambler, the Young Gun (and his wife!), and Dave “the Mogul” Hester.” Dave has quite a story. He had a DUI and was sentenced to do community service at a Goodwill store. It is where he learned to price used goods, and that set him on this career path and onto superstardom! I love his story! The best part is, when Dave was asked about his “biggest regret” it wasn’t the DUI or the Goodwill stint (he says, “God works in mysterious ways” –AMEN!). His biggest regret was not getting more education and options. It got me thinking about regret, options, and choices.

                Caregivers have no room in their lives for regret. There can be NO regret. Regret is counter-productive and a waste of energy. It’s living in the past, and we all know the importance of living in the present for a good life. We can never go backward. Frankly, why would we want to do that to ourselves? We have to always move forward.

                I often ask myself if I had not taken on care of Gramps, would I have regret. I never thought that way at the time, consumed by all the details Caregivers must face every day. Now, I have some time to reflect and think these kinds of hypothetical questions. I would like to think I live in the now moment, not in the past, and it is not in my makeup to waste time regretting anything. However, if I had sent Gramps to be cared for elsewhere, I would have worried at that time, and I am sure years later, I would’ve felt bad. Yes, I think I would have had regrets.   

                Thankfully, I made the decisions I made, and although it was hard at the time, Gramps and I did alright. I have no regrets at all. None. There is peace in doing the right thing, making that effort, and being loving and caring. It’s not about being perfect. We all make mistakes, have our off moments, become inpatient – it is okay and to be expected. Caregivers are allowed to be human. No matter what happens on your Caregiver journey, always take the high road and do the best you can. When your journey comes to the end of the road, you will have peace of mind. There will be no need to look backwards. You will have no big regrets.

It's Not a Project

             By trade, I am a certified project manager. My work involves detailed plans with tasks, milestones, dates, timelines, budgets, contracts, and we talk about things like scope, resources, assumptions, and risks. That’s my day-job. In my personal life, I’ve learned not everything has to be a project. As a Caregiver, there are so many details and things that have to get done. If we made a project out of all of it, we would never get anything done. There’s something to be said for “just do it.”

                Admittedly, I kept long lists of things-to-do because frankly, I was so stressed out of my mind, I couldn’t remember anything. A number of times, I found myself walking into the kitchen to get something and standing there completely confused not recalling what I needed. By the time I walked back to the living room, I would remember and go get it. I am not ashamed to tell you that this cycle would sometimes repeat, and I would find myself walking back and forth, forgetting a few times. My doctor told me I was like a computer overloaded with so much data, that I was having performance issues and error-ing out, in need of a reboot. I had to write things down.

                Now, things are easier, and I don’t have as much on my plate. I still don’t procrastinate though, which is something I learned, because Caregivers do not have the luxury to put off anything. When something has to get done, we have to deal with it and move onto the next, because there is always something else that arises.

                I notice that some people seem to make a project out of things that really should not be a project. Their things-to-do-lists are long and filled with shopping, what to buy, what to return, what to cook and eat that evening, and on and on. I have some friends that tell me in detail about their trips to the drug store, the grocery store, their coupons, special deals, and so forth. On top of it, they agonize over details and research decisions that really, I am not sure need to be so complex. Not every decision requires a Google search.

                This isn’t about judging how people organize themselves, but rather, it’s a point about simplifying your life. If you have to go shopping and a list helps you, great- make one. Stick to purchases you need so you aren’t running around returning after the fact (not to mention dealing with clutter at home that you have to find room and later organize). You don’t have to research every purchase, particularly small ticket items or day-to-day consumables or find that bargain that saves you a few cents but requires driving across town, taking time to find that special store, not to mention costs you gas money. I often hear about people wasting time playing online and I find myself wondering about how much time we are all spending on stuff that should be simple and just not that big a deal. Not everything has to be a project, so don’t make it one.

Velocity

The story of Steve Delabar, the baseball player on the Seattle Mariners, made me cry –but in a good way. If you haven’t heard or seen it, you can catch it on HBO, but here are some highlights. This guy was a pitcher, got injured requiring nine screws in his arm, and went into early retirement from baseball. He went back to school to work on his degree and did some substitute teaching. He stayed close to the game he loved, coaching, and working on a new technique to help players improve their throwing arm. Through helping others work on their game, he was working on himself. He tested his arm, and to his surprise, he was throwing 92-94 and even as high as 96. He went on to play in the minor league, was doing well, and then he got that call. The dream! He was going to the big league! Love it! Happy tears!

I read up on this technique and I learned that pitchers need speed, which we know, but they also need something called “velocity” which is not the same thing. Velocity is based on physics and release of energy. In the context of baseball, it’s about the mechanics of the pitcher’s body movements that result in a release of energy and a good, fast, controlled pitch. It doesn’t take a lot of upper body strength to throw a little baseball fast. It takes velocity because pitching is an explosive movement. It’s like a crack of a whip. If you don’t make that fast wrist snap, you don’t get that crack –same idea.

My Gramps had a stroke and had great difficulty walking or “ambulating.” He used a wheelchair and had limited mobility. He had a “gait velocity assessment” which measures in meters per second the level of impairment, indicates from mild to severe, and gives a prediction of risk for falling. He was able to do basic transfers to use the commode, and get into the shower chair, and into bed, but he needed help with all of these things. I had to learn so much when I became a Caregiver, and transfers was one of the scariest things to me because I had such a fear of my grandfather falling and getting hurt. I never thought about or realized that if I moved the wrong way in my supporting him, I could’ve hurt myself or both of us in the process!

I want to recommend that if your loved one or patient has limited mobility, work with his rehab staff and/or doctors and nurses on how to support transfers. It is important to learn the proper technique so that your loved one doesn’t move too quickly and get dizzy, confused, and lose balance. It is also important that you move properly, bend your knees, do not strain your back and twist inappropriately, and avoid getting hurt yourself. Lock the wheels on the wheelchair, move the foot rests. If it’s a transfer to a hospital bed, lower the bed. If you are using a gait transfer or any device, make sure you follow instructions. If you know a two-man transfer is required, do not go it alone. Never grab your loved one’s clothing. Stay close. Always take your time, never rush this process. These are basics and there are dozens of other tips, but work with your healthcare provider, to learn the proper technique for you and your loved one’s safety.

Dorothy Disillusionment

               I became a Caregiver after my Dad died, a sudden, shocking event that lead to me taking care of my grandfather. Your path to becoming a Caregiver may have been due to someone you love’s death that made you “step in”, or maybe your path was different than mine, maybe your loved one became ill, maybe it was old age or even Alzheimer’s, or even a sudden accident. There are many life events that can put you on this path, but regardless, it is life changing for you and your loved one. The part that is a little harder to absorb is that it is NOT life changing for those around you. Let that sink in a moment. I am calling this “Dorothy Disillusionment” because when this realization hit me, I remember thinking about the Wizard of Oz and the famous, “We’re not in Kansas anymore.”

                I remember thinking that my big-happy-Italian family was going to help my grandfather and I. That bubble burst early, replaced with the harsh reality this was not going to be the case. I remember asking my Aunt, his daughter, why she doesn’t even call regularly? Her response was that when Grandma was alive she only called once in a while. Whoa! What?! Did she really think this was the same as when Grandma was alive? The answer was “yes” because for her, what changed? Nothing. She went back to her family and way of life. My world was shattered. Gramps’ world was shattered. Everyone else went back to business as usual.

                I definitely had a hard time when this realization struck. I was angry. Upset. Frustrated. Confused. I experienced every negative emotion in the book. You name it, I felt it. I could not get my brain around how everyone around me was still doing what they do, going about their lives and business. I mean, my Grandma died, my Dad died, life as I knew it ended. They were gone. Helloooo!

                I hate this quote, but here it goes, “life goes on.” We know this because, although they didn’t wake up the next day, I did. Gramps did. We were all still here, but we were different. Changed. It was vivid and painful for us all, but then the call of jobs, school, and life obligations kick in, and everyone gets back to doing what’s needed to do and move on. Some move on quicker than others. I felt stuck, and altered, but that doesn’t mean everyone else had to be too. It didn’t mean they didn’t love my Dad or Grandma less. It didn’t mean they didn’t love my grandfather or me. It’s just life. It’s reality. It is what it is. So, if you find yourself in shock and disillusioned by how quickly people rebound and seemingly move on, don’t be. Everyone grieves differently. It’s a process unique to every individual. Let them have their space, don’t focus on it or get stuck on it, just get on with it.