Outlook

What is your outlook on life? My outlook is pretty good. Outside of my work committments, my biggest commitment is to myself and to make myself happy. I fill my days with friends and family, working out, eating out, playing online, and reading. My life is pretty sunny. I heard the cutest song the other day and lyrics were, "don't steal my sunshine." How many people that you interact with on a daily basis are "sunshine stealers." Why are they in your life? Some of these people, we had no choice. They came in by way of work, or by way of someone we love introducing them into our life. Maybe we do have a choice though? Can you insulate yourself from negativity and negative people? It's hard to keep a positive outlook on life, when people around you are downers. You can still choose to keep your spirits high and not let others influence your thinking and your day. It takes effort to focus on what is working and good in your life, and not be sucked into a vacuum of darkness. Caregivers have it hard, no doubt. Don't make your life harder by dealing with people that bring you down. Cut them out and look ahead.

Sunshine Stealers

I live in the sunshine state of Florida and it truly is a paradise. It is easier to start your day with a good outlook when the sun is shining and butterflies are around. Caregivers have a hard job and its easy to get weighed down with the heaviness of the responsibilities. On top of our "things to do list", we often have to deal with negative people. That is part of life, for sure, as we can't always choose who is in our life. There are work people that came our way by no choice of our own. There are also friends of family that came our way that we normally wouldn't choose to associate. I heard a song the other day with a great lyric, "don't steal my sunshine." There will always be opportunities for people to dampen your spirits -don't let them. Do your best to maintain a positive, happy attitude and lead a good life. Be grateful for everything God brought your way and into your life. Don't let anyone steal your sunshine.

Caregiver Chaos

          Two words that say it all to describe a Caregiver’s life is simply, “organized chaos.” Need I say more? What can I write that you don’t already know? Life is busy and things can be very hectic. The best a Caregiver can hope for is to still maintain some sense of organization. I had many days where I felt like the pinball in the pinball machine, bumping around off the flippers, and a lot of noise. If this is where you are right now, take heart. Navigate the road before you the best you can. It all comes together somehow. Stay in your lanes and stay the course, it always gets better. Don’t let Caregiver chaos get you down or define who you are.

Trust, but Verify

            Continuing with my thoughts on home health aides, today’s advice is inspired by the famous Ronald Regan quote, “trust, but verify.” Trust that you made a good hiring choice with the home health aide you brought into your loved one’s life and your home, but always follow-up to make sure they are doing the right things. Ask your loved one if he or she feels comfortable with the aide and if they are getting the care they need. Are things getting done? Make these checks routinely, so you get consistently good care. At work, we put controls in place to make sure the operation is running smooth, and you must do the same thing. Do not make it easy for people to do the wrong thing. Trust what your eyes see and trust what your gut tells you is happening, good or bad.

                The “trust, but verify” approach applies to what doctors, nurses and pharmacists tell you to do. Read the prescription bottle label and understand what the medicine is used for, when to take it, on a full stomach or not, and how much water to drink with the pill. Understand potential side effects and what to do if your loved one has an adverse reaction. The Internet puts a wealth of information at your fingertips, so don’t be afraid to do a little research to verify what your healthcare providers are telling you.

                Lastly, I would apply this advice to any time you ask your provider or insurance to do something. For example, if you are going to a specialist and need a referral, ask your primary care physician (PCP) to do the referral, but verify it got done before you arrive at the specialist appointment. Same idea with sending medical records or getting films, xrays or any medical documentation, make sure the request gets done, but most importantly, make sure there is follow-through and the records get to where they need to go.

Wisdom

                I learned yet another gem from my very wise friend, Peggy, and this one actually comes from Peggy’s mom. It’s a Chinese saying that translates into English as, “I eat more salt than you eat rice.” Asians eat quite a bit of rice, so what her mom is saying is that, because she is so much older, she has consumed more salt over the years, something you wouldn't eat, but use to season food, than the younger person eats rice, a staple in the diet. I love it! Basically, it boils down to respect your elders as they have a lot of experience and wisdom to offer.

                Scientists have shown there is a connection between growing old and gaining wisdom and happiness. A Stanford psychologist, Laura Carstensen, coined the term, “the well-being paradox” to describe how older adults have somewhat diminished body and mind capabilities, but on another level, they have more emotional and social capabilities or “wisdom”. Further, there is a U-shaped graph for happiness in that it’s highest when you are young and old, but that bottom part, the lows, occurs in middle age.

So, I was wondering if it is true that with age comes experience and with experience comes wisdom. Judith Gluck from the “Defining Wisdom Project” did a study that shows age alone is not enough to gain wisdom, but you have to be reflective about your experiences and gain understanding, meaning, you can’t just have an encounter and become wise. If only it were that easy!

So, what is wisdom? I always thought it was having the answers but now I am understanding it’s knowing and asking the questions.

                I learned a lot from my grandparents, and they had such influence over me, that I blog about them often. They shaped me into the person I am today, and I am grateful. I always gained such insight when I would talk through problems with them, and I always felt they were so wise. They had a way of seeing things differently and explaining things to me, particularly about people and why they did what they did. They had such compassion and tolerance.

I think wisdom offers perspective. I wish my grandparents were still around so they can explain to me why some of my family members act the way they do. I often wonder if the relationship challenges I faced, and still face today, will look different to me in 5 years, 10 years, or beyond. Maybe I will have a different understanding about people’s actions. Right now, people are a mystery. Maybe it’s a sign of my age, and it will all make sense some day. Maybe the very fact that I think about relationships, and I ask myself the hard questions, will help me find these answers I seek, and gain wisdom as I grow old. I think another part of growing old is to have the wisdom not to care so much about things that are out of your control.

Finding the Right HHA

                I hear a number of stories about home health aides(HHA), some good, some down-right bad. It goes without saying that we all want the best care for our loved one, and when we can’t do all of it, and we have the means to bring in aides, we have to be careful about the kind of person we choose to bring into our home.

This may put off some people, but I do believe you get what you pay for when it comes to home health aides. I know times are tough, and people don’t have a lot of money to spend, and we do need a lot of help. However, if you find an aide for $5 per hour, you probably aren’t going to get a lot of support. At that rate, you probably got what boils down to a babysitter. Sorry, if that offends anyone. Now, where it gets interesting is in the $8-10 range. You can find a little better quality aide, someone that may have experience and knows first aide and has certification (ask!). I think it’s in the $10+ per hour range, where you will find people who come with certification and will pay a lot more attention to your loved one. Regardless of the hourly rate you can afford and decide to budget for the help, be clear on the domestic worker/employer rules that may require you to file 1099s, etc.

Always interview the candidates and be very specific in your needs, time to start/end, hours per day, per week, what all is involved, special needs, diet, medicine concerns, if light housekeeping is required or more involved housekeeping, laundry, vacuuming, dusting, and note if your loved one has personal hygiene requirements, etc. Get references and check them. It helps to speak to someone that the candidate worked for previously. Word of mouth is the best referral.

 Leave emergency contact phone numbers (at least primary and secondary contacts, home and cell phones) and it may make sense to leave paperwork in the event of an emergency where the aide would be required to take your loved on to the hospital. They should be allowed to sign your loved one in, and be sure they know the insurance and basic information. I typed all of these details up and put them in one of the plastic sleeves you can get at Office Depot and left it on the refrigerator with a magnet. I was so specific that there were times for meals, preferred meals, the schedule for showers, and even called out favorite tv shows and their times and channels. Medicines were documented with doctor, frequency, dose, when started (or stopped), and description for what they were used to address.

In addition to the basic requirements, watch the interaction with your loved one. Do they get along? This is important and not to be taken lightly. If your loved one doesn’t like the aide, it will not be a healthy relationship and that could cause stress on your loved one that would impair their health. Not to mention could cause stress on you if you find yourself worried about what is going on when you are not home. Be clear on the expectations around interactions. I expected my aide to have coffee with Gramps, read the paper, play cards, take him outside to listen to the radio, and basically whatever she could do to engage him and interact. I didn’t want him just sitting by himself watching tv all day. I heard stories of aides that ignore their patient and play on their computer all day, that is not right and should not be tolerated. Set the expectations from the beginning.

Much like we don’t always get medicines right on the first go around, it may require testing out a few aides before you get one you and your loved one like and trust. Be particular! This is your loved one and your home and you have to be careful on who you let into your home. If you don’t get it right the first pass, don’t be afraid to say it isn’t working and find someone else. There is someone for every one and it’s important to get it right.

Global Cooperation

           I don’t like to tell Caregivers what to do, because there’s enough of that to go around already. However, if I could suggest a goal, it would be to strive for “global cooperation”. The best thing you can do for your world, is to get others around you that live in this world with you to cooperate. I define “cooperation” as working together towards a common goal and/or understanding. It’s actively working together, not passively, and not working against each other.

In looking at my own situation, I would have said we all cooperated. However, I set the bar low in that I didn’t ask for help like I needed and took whatever crumbs people were willing to give. I would not say this was active cooperation, I would just say that there was no overt contention. If you saw us all, it would’ve looked like we were working together, but I didn’t FEEL like we were working together, and more honestly, I felt like the workload was unfairly distributed with the bulk of the heavy lifting on my back. Worse, I felt that arrangement was satisfactory for those that had the lighter load, and that hurt, because I thought they cared about me and now felt that had to be re-evaluated. So, what does this all mean to Caregivers?

                Make global cooperation a priority and seek support of family and friends, enlist their help, ASK for their help, and assess whether or not they are willing and able to cooperate. Are they just along for the ride? Or are they actively making the effort to partner with you and work together to take care of your loved one and make sure that you get the support you need? Global cooperation in Caregiving may sound as difficult as it does on the world-stage as we often hear about it on the news. A symbiotic not parasitic relationship is possible. It can be done and I believe it has to be done. It is something you build together to achieve mutual understanding about your loved one’s needs, your needs as Caregiver, and their role as their conscience guides. It requires open and honest communication and consistent effort. Give it a try, and don’t give up!

Let Go

         Control is an illusion when it comes to Caregiving. I really used to believe that Gramps could somehow be immortal, if he took his vitamins, medicine, and as long as his blood tests were okay, we could beat death. I tried to control everything, our schedule, food, nurses, doctors, medicines, the house upkeep, everything had to be in perfect order, “or else” the worst would happen. If I could give advice to Caregivers reading this blog, one of the most important tips is to “Let go.” Release any expectations that you can control everything, including outcomes. Release the expectation on yourself that you NEED to control everything, including outcomes. Let the words “let go” marinate. It takes a little bit to process and then apply it to your Caregiver practice. None of this is easy. I wish I had learned the “let go” lesson, because I stressed myself silly with trying to control our environment and make everything perfect. In the end, ironically, the worst happened, Gramps died. It was nothing I did, nothing I didn’t do, nothing that I could have done. It was nothing he could control for himself either. It’s life. Let life flow by letting go.

Meaningful Use

              Meaningful Use is dominating my work-world with the push to implement Electronic Health Records, and today, my thoughts are on how I am using this gift God gave me, “life”, and making it meaningful. I’d like to think I am living my ideals and being the best “me” I can be, while being kind, loving, and supportive to those around me. My personal mission statement is to take care of myself, first and foremost, and to live my life with integrity, morals, and character.

                It’s been said that when you die, your life flashes before your eyes. I also heard that this life review isn’t done through your own perspective, but rather than from the view of the other people in your life and all the various interactions. I think I am going to enjoy that! Or at least, I would like to think I make people around me happy and feel good, and if I have the chance to experience “me” from the other side, I’d like to think it would be a positive thing.

                I don’t spend a lot of time thinking about “the meaning of life.” When I do have time for reflection, I wonder sometimes why my life choices and situations played out the way they did and try to understand the higher purpose. I believe that there is symmetry to how my Gramps took care of me as a child, when my mom died and my Dad lived at home with Gramps and my Aunt Grace. I believe I gave back when I was a Caregiver.

                Being a Caregiver was a very meaningful experience for me. I learned a lot about myself and my relationships and others in the process. I don’t imagine any of those lessons could have happened any other way. I am grateful for the time that Gramps and I had together. I am grateful for the aides, doctors, and nurses I met along the way. I saw some really beautiful humanity in how they took care of Gramps and helped me.

                I don’t know what phase of Caregiving you are in, just starting, in deep, or ending, but I hope you find ways to make your life meaningful to you and your loved ones. The best we can all hope for is a life of “meaningful use”.

I'll Be There

I am watching Michael Jackson’s “This Is It” movie, which documents his rehearsals for the final curtain call tour, one that never happened. As we know, MJ died of a drug overdose, so this show can only be seen in the movie. His lyrics are moving and magical, but one song inspired me tonight, “I’ll Be There.” Aren’t those great words? If Caregiver’s had a theme song, this would be the song they would sing to their loved one. I love the lyrics, “Where there is love/I’ll be there/I’ll be there to protect/with unselfish love that respects you/let me fill your heart with joy and laughter/just call my name/ and I’ll be there.”

At first, I was going to blog that the best words a Caregiver can hear are “I’ll Be There”, but changed my mind. It’s future-ing, and as anyone disappointed in the past can tell you, people make promises, well intentioned, that they do not keep. The words, “I’m here for you” are slightly better. The best words a Caregiver can hear, aren’t words, their silent deeds. The friends and family that just show up, with arms open, offering to help. The card that comes in the mail, the call, the effort that someone makes to let you know they are in it with you. Sounds easier than it actually is, this I know. It takes effort for people to take the time to help others, because everyone’s so busy, and a little more disconnected, and maybe a little more selfish with their time.

For the people that do support you, say a “thank you”, and make a mental note of the kindness. Those are the relationships worth your time and effort. Someday, they may need some help and you will show your love, without words. You will show up. “You’ll be there.”

Buyer Beware - Online Drugs

I was watching the news this morning when a warning came out about buying drugs online. The particular drug they spoke about was Adderall, a powerful, potentially habit forming drug made of a combination of dextroamphetamine and amphetamine.  It is used to treat ADHD, Attention Deficit, Hyperactivity Disorder, and even narcolepsy. When I first saw the news story, my initial reaction was that this is nonsense, that people with drug problems were just seeking a high, and the internet was the easiest way to get the narcotics. Now, that may be true for some people, but I am certain there are people that have a legitimate condition and they buy drugs online because it’s cheaper and easier. It can also be dangerous.

First, you need a prescription to get drugs you need legitimately. There are exceptions, but that is a good rule of thumb. If you can purchase a drug online, and they don’t ask for a prescription, ask questions as it’s probably not legitimate.

The other good tip is that if they mis-spell the drug name, run. It’s not legitimate. It’s not just a typographical error on a website, it’s a counterfeit.

Legitimate website’s like known pharmaceutical companies, and even myrxadvocate.com, have patient assistance programs where you can apply online to get deep discounts.

Buying drugs from other countries, like Canada, is also on the rise through the Internet making it easy. Again, the best advice is to do your homework and make sure it is legitimate.

            If you pursue this route and decide to get drugs online, be smart and do your homework. You don’t want to make the mistake of buying a drug and finding out later it is a counterfeit and now you have gone a period of time without the help you need.

The Limits That Lurk

               So much has been written already about living a limitless life, and the common thing that all the experts will tell you is there is only one thing standing between you and what you want to accomplish is yourself. That is true, but I think the concept of a “limitless life” is a fallacy. I think it’s more important to explore the limits that lurk in your life and understand the underlying conditions by which you hold yourself back. Limitations usually stem from obligation, fear, comparisons to others, guilt and many other negative thoughts. If you truly want to overcome this negativity, and push the boundary of the self-imposed limits, the best way to do that is to change your thinking about a situation and about yourself. It requires a paradigm shift and there is nothing easy about it.

                Many Caregivers isolate and feel alone and even trapped. They feel they cannot socialize like they used to before they became Caregivers and they box themselves in. These limitations are not easy to overcome, but if you truly want to broaden your horizons, it can be done with effort and focus on the thing that you want. If you want to figure out a way to get back out there and be with friends and go out, you need to outline the things that you can do –what you are willing to do – to remove this block. It can be done, but it is not easy. It is a worthy exercise to think about the areas in your life where you feel stuck or limited and come up with an action plan to make the changes necessary to move forward and overcome your limitations.

There's Always Time

            I have a handy-man-turned-friend that I worked with to renovate my home and Gramp’s home after he passed. Today we were catching up, and I was telling him that I have been busy working and getting some extra hours, and he was saying he still does the side jobs in addition to his fulltime job. He made a comment about how he can fit it all and said, “there’s always time.” I love that thought! He also talked about how the side gigs are never consistent, which is good from his perspective, because it allows for some downtime in between jobs. The two things that struck me are the “always time” comment and the fact he looked at the inconsistency between jobs as a good thing, a much needed thing because it affords him a break, rather than look at it as a negative when things are slow.

                I decided that, rather than focus on how “I don’t have time”, I am going to make time and affirm for myself, “there’s always time.” I think this exercise can be life-altering! As a Caregiver, I felt like there was never enough time. We all get the same 24/7, but someone, my list of demands couldn’t be balanced against the 24 hours. I was always racing against the clock –and losing!

                It takes practice to be strategic about your schedule and sequencing what-happens-when. There are lots of things that have to get done –but they don’t all have to get done in one day. Further, sometimes procrastination leads to not needing to do the task at all!  (This won’t always be the case, but I have had this happen and its always a surprise on how many things that I think are necessary, that if I neglect, I learn are not needed).

Always take the time to spend with your loved one. Have meals together. Talk to one another about your day and what is going on in life. These are the building blocks of happy memories and you will never regret the time you spent together. Make it happen! Make the time!

Build a Bridge

         I plan to make my way to Crissy Field shortly to join the thousands of others wishing the Golden Gate Bridge a “Happy Bridge Birthday!” There are a lot of festivities around the 75^th birthday of the bridge, including fireworks and a concert by Mickey Hart. Before I venture into party mode, I thought I would share some thoughts around the difficulties of being a Caregiver, and that is other people’s negative comments and misunderstandings.

I have written a few times about the hurt I felt at comments made about how I should have realized it would be hard to take care of Gramps, and that Gramps and I were on our own, often unsupported. (I won’t say “always” without support, because that discounts the friends and the folks that did what they could to make us feel connected). When people hurt your feelings, your reaction to the hurt is your choice. You cannot control what they say or do, but you can control yourself. It’s the Serenity Prayer, “Lord, give me the serenity to accept the things I cannot change, the courage to change the things I can change, and the wisdom to know the difference.” I cannot decide if the thought of “changing people” is an oxymoron or a fool’s errand to even attempt, but either way, I do know it falls into the category of things that you cannot change. Once you accept the person for who they are and what they are saying, you have a choice to walk away, or to try to get over the hurt. You can choose to “build a bridge and get over it.”

                In honor of the Golden Gate Bridge, I wanted to leave you with that option. You can reach out and work on the relationship, and get over the hurt. You don’t have to if you don’t want to, and you can remain hurt, you can heal in time, or you can move on from the relationship, the options are finite not infinite. If you value the relationship, do whatever you can do to change your own thinking, keep your heart open, and bridge the gap between you and your loved one.

                Happy 75^th Birthday, Golden Gate Bridge! Let the good times begin!

Peaceful Easy Feeling

I am not sure if it’s because I am on vacation in San Francisco, the land of hippies, with the Bay Area, and famously, Haight Ashbury home to the Merry Pranksters and later the Grateful Dead, but this is a very peaceful place. I had an epiphany I wanted to share with you all and it’s simply this, it’s easy to be peaceful, when life is easy. Not that anyone’s life is really “easy” as there are always challenges, and no one’s life is perfect. However, when you face adversity, and are dealing with difficulties, and sadness, and struggling, it’s hard to be at peace. Maybe impossible. I think you can attain moments of peacefulness, but unlikely you can sustain. We are not Buddha. When the challenges are removed, it’s easier to get into the energy stream and let life take you where you need to go. Go with the flow, sorta speak.

I often say, my life these days is easier than it was, but there is always an underlying sadness that I cannot shake. I have written many times about death and loss, and everyone says time heals, but I have to say, for me, there are moments where the sadness overcomes me, and I struggle with grief, almost like the loss happened yesterday. I love the quote by Mrs. Kennedy, and I am paraphrasing, but she says time heals all wounds, but she disagrees; in time the wound heals, but the pain remains. For me, life got easier, but sadder, if that’s a word.

I am going to end this blog early today, before I get myself worked up. I am on vacation in San Francisco, and there is no better distraction than spending the day with my childhood friend, with her two children, the Wharf, and Ghiradelli tempting me. It’s easy to switch gears to prevent the downward spiral, with the Bay breeze calling, and chocolate mints on my bed pillow at night. With that, I am venturing out and on with the day. Enjoy your weekend!

Memorial Day Weekend in San Francisco!

                I am in San Francisco for the weekend, visiting dear friends, and just enjoying life. I rode to the hotel on a shuttle I shared with a couple from New Zealand. They were delightful! They told me all about their travels and their adventures that took them all over the world. They spotted a little red mustang convertible and they were so excited! They told me they rented one while on vacation, years ago, and it was the best money they ever spent. I thought that sounded like so much fun! I was in awe of their lifestyle, truly inspired, and I told them as much. The wife told me it took a lot for them to plan this trip (SF was their first stop in a two-month jaunt). She told me something, I will never forget, she said, “You have to live life with imagination!” Words to live by!

                As a Caregiver, my imagination wasn’t all too active or wild. I often dreamed of quiet, relaxation time, but beyond that, I wasn’t fantasizing about trips to, well, New Zealand! Now, I have a lot of free time, in between work, and I can go wherever I want to go. “Free” is a word I embrace and value. I have the freedom to take care of myself, be myself, and live a “care-free” life. The “Life of Riley” I believe it’s been called.

                This Memorial Day weekend, I want to kick-off with a gratitude prayer to everything that happened to me, for me, and because of me, thus far, that put me on this journey, and landed me here in this space at this time. As I sit in a hotel room overlooking Fisherman’s Wharf, I am grateful. Not just for the life I am making for myself, but for how my family and friends helped me get to this place.

                On an even more serious note, I want to kickoff Memorial Day weekend with gratitude for all the men and women who served and continue to serve this great country, so I can enjoy this wonderful life, in an amazing country, that affords me opportunities to enjoy life. Some people don’t enjoy life, they are in survival mode, with each day bringing new difficulties. I have never experienced anything on that level. Further, I don’t have to worry about religious persecution, or live in fear that this very blog and my words will get me thrown in jail, or worse, killed. I have these precious freedom-gifts because of our military, and I acknowledge them, and I thank all of them.

                Thank you, to all the men and women serving our armed forces, past, present and future. God Bless America!

Post Traumatic Stress Disorder (PTSD)

          At work, we have an executive that was burned by a project gone bad and her fear is that history will repeat on my project. She often refers this past mess, although she says she is over it.  I couldn’t believe this ghost of years past came back up, again, so a joke was made to forget about what this executive said because she has “PTSD” from the last project. We all got a chuckle over it, but it reminded me of a time where there PTSD was not funny.

Years ago, I applied for an individual insurance policy and was questioned about a diagnosis that I didn’t even realize was reported to insurance, Post Traumatic Stress Disorder, commonly known as “PTSD”.  My Dad died of a heart attack and we had to call an ambulance, do CPR, and it was very traumatic, quite honestly my worst nightmare. I relived that day and those moments, over, and over, and over again. I could not sleep. I could not eat. Every time I shut my eyes, all I could see was my Dad dying. I was feeling pain throughout my body that I cannot explain. The sheets hurt me. My clothes hurt my skin. It was a bad time.

It took months of this before I finally went for help and was diagnosed. I actually thought the therapist visits were cash only, as it was quite expensive, but apparently they still submit a claim to insurance as is in their contract unless you tell them not to do it. (HITECH laws allow for you to tell your providers not to send claims to insurance if you don’t want to exercise your health benefits, and really, psychiatric care is an example of something you may consider). Regardless, I was not denied the new insurance policy, so it all worked out fine.

I learned a few lessons, starting with PTSD is not just something war veterans get. People in terrible car accidents, rape victims or other abuse, and any shock to the system that was traumatic can bring on PTSD. Symptoms include flashbacks like I was having, difficulty sleeping, eating, and daily functioning. The other thing I learned is not to wait to see a doctor if you don’t feel well. I knew for a long time something was wrong with me. The pain alone was terrible! By the time I went to the doctor, I was a whopping 98 lbs! Extremely underweight, and as lab tests showed, dehydrated and a host of other problems. My doctor even mentioned testing for fibromyalgia, a disease thought to cause pain due to over active nerves (I didn’t pursue this test). The bottom line is that I waited to long to ask for help, and I encourage all Caregivers to take care of themselves and make sure it doesn’t get to that point where your health is compromised.

Business As Usual

             Today’s inspiration comes from my work-world, where we discussed a thing called “BAUs” or “Business As Usual”, these are items that don’t require the rigors of change control, because they are standard. As a Caregiver, Gramps and I had some routines that would classify as “BAUs” in the schedule that kept operations going. There were times for getting up in the am, bathing, meals, medicines, and of course, television. There were other things that required more scrutiny and “change control”, such as changes in medications for example.

                Any new medications or changes in the care plan required close attention to how Gramps was feeling and reacting. Thankfully, we didn’t have to add or change things too often, but when we did, I learned about side effects and the importance of keeping in close communication with his doctor and nurses. It’s a good idea to be clear on the risks and side effects before making this kind of change and ask in advance what to do in the event there is an adverse reaction. Should you stop taking it? Call the doctor? What are the next steps? Know this before taking anything new.

                I will share that even our BAUs required effort, and they kept me on my toes. I don’t know if there ever really was a routine that was comfortable and automatic. Each day brought its own challenges, and we were fortunate because Gramps was stable. I know a lot of other Caregivers that, frankly, are in turmoil.

                For all of you, I wanted to offer some tips based on change control. First, start with routines, and what do you need to do on a daily, weekly, monthly, or annual basis to keep things going. Identify them and make a note of what works and what needs to be changed. Do your best to add structure to your life. If a change is required, work closely with your Caregiver team, the doctors, nurses, family, friends, whomever you have available for support, to make sure they are aware of the changes coming. This is part of communication planning, knowing who needs to be responsible v. who just needs to be informed. Then be diligent in monitoring what is going on and how you and your loved one react to the change. Is it working? What’s your fallback plan? Do you have to stop the change all together or modify? Once you make the change, who needs to know it’s done? Taking time to plan and think through these changes will make it easier to get back to BAU.

Self-care

Today, I am keeping it short because I am not feeling 100%. My throat hurts and I am tired. I did a bit of traveling this weekend and it all caught up to me. So, just a note on self-care and what it means to me. When I am feeling a little under the weather, I try to cut-back on my obligations (there’s that word again, I think I should start counting how often it comes up!).  I become more careful about how I spend my time and try not to over extend myself.  Getting enough sleep is a big part of it. I believe eating well should be part of it too, but it’s going on 11pm, I am just now blogging and eating a Lean Cuisine, so much for eating well! I should practice what I preach.

I do preach that Caregivers being caring to themselves is priority one,  and that is not hypocritical. I don’t like the airplane analogy because I feel like it’s so overused, but it’s fitting and here it goes – we must always put the oxygen mask on ourselves first, before helping small children and those around us.  My neighbor said it best, “After me, you come first.” With that, I am putting myself first, and calling it a day. Goodnight!

Bedside Badgering

              Just when you think you’ve heard it all, a new article comes along that really underscores the need for healthcare reform. The New York Times ran an article on April 24, 2012 (“Debt Collector Is Faulted for Tough Tactics in Hospitals”) about Accretive Health’s (public company) practices to go into their hospital client’s patient rooms and start collecting money for the medical care. Yes, you read that correctly, while patients are in their hospital bed receiving medical care, they are being asked, “Will that be cash, credit card, or check?”  The patients assumed Accretive staff were hospital employees, so that adds to the concern that they didn’t identify themselves, and really, even if they did, depending on the patient’s condition, it would be an easy enough mistake to make given the circumstances. The Attorney General is pursuing that angle, because Accretive should have disclosed they were a debt collection agency. When HIPAA privacy laws are introduced to the mix, the story gets even more interesting, because the collectors had access to the patient’s medical information.

                Accretive specializes in revenue cycle management –as do I! Hospitals are struggling to make ends meet these days, with higher levels of charity and bad debt write offs,  it is easy to see how the lines between clinical care and financial counseling can go hand-in-hand more frequently.  Think about when you go the eye doctor and have to purchase glasses – refraction usually isn’t covered, the lenses may be depending on when you last had them made, frames you may get a discount, and contacts typically are not covered. Shopping optical looks more like retail, shopping at any store. Medicare has long implemented an “Advance Beneficiary Notice (ABN)” to notify patients of their financial responsibility, prior to receiving care, so they can decide if they want to get the service. Simply, medical care costs money.

                I think this bedside badgering, er, billing, is ugly. As a patient, if you are asked to pay for services while still in the bed, you may be afraid to refuse payment thinking it could compromise the care you will be given. You may fear being discharged early just to free a bed for a paying patient, or you may fear being denied care all together. The NYT article describes how patients in Emergency Rooms were delayed from seeing a medical provider so the payment discussion could take place. I think EMTALA should step in there, even ABNs aren’t required in emergency and fast track settings, so we probably need to think through the desire to accelerate collections in those areas, and balance that against wait times and the need to get the patient seen timely.

                I understand the drivers that caused the bedside billing. Although the economy shows signs of recovery, we aren’t there yet, and most people will pay their food, electric and mortgage bills before medical bills. Medical bills are always lower priority and fall to the bottom of the bill heap. Hospitals in turn react and try to collect payment while they have access to the patient –even if the patient is still admitted in a bed. Maybe there is a middle ground where we can put some process in place where, under certain conditions, it makes sense for hospital representatives that clearly identify their role,  have that financial conversation with the patient, prior to discharge, but make it clear it no way impacts the care they will be given. Icck. As I typed it, it just sounds bad. I don’t know if there is a good way to do collections bedside, but we haven’t heard the end of this subject.

Any Excuse Will Do

                I learned many things as a Caregiver, and one of the hardest lessons was that any excuse is better than none – in some people’s minds. In my mind, I tell myself any excuse they make will do. The bottom line is that, when people want to do something, they make it happen. When people don’t want to do something, they make excuses. There really is no in-between.

                That plays out in many forms in caregiving. When people want to support you and help your loved one, they show up. They may not know what to do to help, but the will offer whatever they can –a phone call, a visit, a card, a loaf of fresh baked bread, fig cookies they know are always welcome. Anything. And you know, any and every gesture is appreciated.

When people don’t want to help, you will know it. They won’t show up. That’s your first clue. They will make excuses as to why they are too busy, or they will turn it on you, that your struggles are your own fault. When I asked for help because I was struggling, I was told that I should’ve known this was going to be hard, because they told me it would be, and I wanted to do this, so I should not to be a “martyr.” Yep. Nice, right? Actually, I wasn’t “told” I was screamed at in the most ugly, hysterical scene ever, in front of my Gramps in our own home. It was awful.

I was told by Daughter # 2 that she couldn’t take care of her Dad, because she had a bathtub, and he wouldn’t be able to get in and out of it. Never mind they make sliders and there are ways to handle transfers, it didn’t matter. I was hurt on behalf of Gramps then, but I just laugh now. It’s funny! (in a sad, pathetic way). I am sorry she felt she had to come up with that excuse, because a simple “I don’t want to do it” would’ve been more authentic, as bad as it would’ve sounded to hear. She didn’t say those words, but she said those words in essence, right?

I learned that whatever the excuse, the bottom line is that they didn’t want to do it and they felt they couldn’t do it. When I tell you that “any excuse will do”, I say that because I recognize that there is no point in belaboring the obvious – it won’t change things. Once people come up with their excuse they become pretty attached to it, and it becomes logical in their mind that they cannot do what you are asking. So, in essence, you are on your own. They are out. You are in. That is that.

And you know, I feel like it’s alright. I mean, it’s not “right”, in a moral-stand-up-character sense, but it works out alright, because when you step forward the most amazing thing happens, God’s got your back and will send angels your way to make sure you have everything you need. Let other people make excuses. God makes miracles. Together, with God’s blessings, you will make it all happen exactly the way it is supposed to happen. Amen!

Meditation

              May is Meditation Month, so it seems fitting to do a post on the topic. Meditation is a practice of training or quieting your mind to achieve a healthier outcome. Practitioners work on quieting the “monkey mind” which is the thousands of thoughts that clutter our thinking. Once we clear out the clutter, there is clarity. For Caregivers, meditation can provide relaxation and a means to center yourself so you can see your way more clearly and do all the things that must get done. In a real practical way, for me, meditation helped me decompress quicker. I found, through meditation, rather than needing hours in front of a tv or on the Internet to calm down, I could get myself centered in minutes and feel better.

                There are many methods of meditation and you can start with the Internet and even take a class. I think the most important thing to realize is that you are not your mind. Your mind is a tool for thinking. I believe thoughts do shape our reality, so it is vital to realize and be in tune with what is going through your mind. The challenge is that the average person will have 65,000 thoughts per day, and most are repeats from the day before, and the day before that and so on. The key to meditation is to be present, and control your thoughts from wandering to things that happened yesterday and in the past. Let them go. Control your thought traffic and focus on the here and now. Become aware. Aware of your mind and body. Science has proven there is a comparison to what happens to us during sex and the disconnect with body, same thing with meditation. You can lose track of time and a sense of your body and surroundings, and just be. It sounds easier than it actually is, so start slow, and plan to meditation for a minute and see how you do. You can build from there. They call it a meditation “practice” because that is exactly what it is – something you will want to do daily. The benefits are worth it.

Jet Lag

          I flew home to FL on the red eye from Los Angeles. Years ago, I took this flight every other week and it wasn’t easy, but it didn’t bother me like it does now. I never sleep on the flight because I can’t get comfortable on the plane, whether the seat is too hard, back too rigid, or temperature just too cold. I am not sure if it’s a sign of older age, but the jet lag is a killer – I am exhausted! I really can’t complain though, because the best part about all of it is that I am back working doing the jobs I love, travelling, and working in LA – my second city. I chose this lifestyle, and I am so grateful to have it back.

As a Caregiver, I wasn’t able to travel and do this work anymore. The first year, I worked at home and barely left the house. I took a significant pay cut. Life was very different. I longed for the days when I could travel, live in hotels, and do the work I enjoy.

When I think about how there are some people who never get to travel, let alone fly, I realize it’s truly a luxury. It doesn’t feel like it when the destination if for work and not a Hawaiian vacation, but I recognize that it is indeed a special blessing to be able to do all the things I get to do. It is true that when you embrace an attitude of gratitude, you cannot be grateful and unhappy in the same moment. I think about that whenever I have an off moment or day. The exercise of remembering all the good things in your day and life in general, help you appreciate the beauty and bounty of it all, and then you can count your blessings. I know I am blessed and I am most grateful. Recognize the blessings in your life, express appreciation, and see more come your way.

The Donut Hole

             With all my blogging about diets, you may be wondering if this is some kind of eating binge blog, but alas, it’s not. Today, I am tackling a meatier topic –the Medicare Donut Hole. I think this is such a weird name for it, but I will explain and you can decide. The way this works is that when you get your prescription drugs covered by Medicare, you only pay your copay up to your $310 deductible. Your Part D drug coverage pays the rest up to $2840 (including your $310). Once you hit this $2840, life is no longer sweet sorta-speak, and you drop into the donut hole. At this point, you fell into the coverage gap and now pay for your prescription drugs. The good news is that, with healthcare reform Obama signed in March 2010, you don’t pay 100%, you pay 50%. For some, that is little consolation, but it’s better than nothing. Now, when your out of pocket costs hit $4550, catastrophic coverage kicks in, and you made it back to the other sweet side of the donut, and Medicare pays for your drugs. Wow, that’s a lot.

                It gets more interesting in that you still pay your premium for this Part D coverage. The above is the standard Medicare plan, but your plan through your insurance can differ from this and offer more benefits to be competitive in the local market, so for example, they may pay for brand or generic brands while in the coverage gap. Medicare also issued more discounts for drugs to help offset the costs.  By 2020, the donut hole gap will change – still be there- but what happens is you will only be required to pay 25%.

                In the meantime, try to order 3-month supplies of drugs you use routinely – it’s cheaper than over the counter monthly refills. Pharmaceutical companies offer assistance programs for those in need, as do local charities and various state programs. There are insurance plans that help offset the cost of the coverage gaps, but you will pay more in monthly premiums. If you can switch to generic, try to do it.

                I haven’t seen any recent studies on how many people fall through the donut hole, but I recall a Kaiser study from back in 2007 that said its roughly 4 million people, usually people with chronic diseases, and they hit the donut hole mid-year. Further, many people stop taking their medications because they cannot afford them.

                The coverage gap places financial burden on patients, many of which do not fully understand all their benefits. Sometimes I think you have to be a Philadelphia lawyer to read through all of evidence of coverage language. Most people “get it” when they get a bill from Medicare telling them it’s time to pay. The best recommendation is to plan ahead, do your best to understand your coverage plan, determine if you need a Plan D coverage with wider benefits to cover the donut hole. Also, investigate generic brands and talk with your doctor’s office and other providers on any programs they may know of and can recommend to help offset the costs.

The Healthy Diet Dilemna

          A friend of my grandparents, Barbara, is 96 years young, doesn’t take any medications with one exception, the occasional ant-acid. She gets ‘mucus’ when she sleeps is what she tells me, and she can’t understand it. At the age of 96, I think that is extra-ordinary! I often ask her if she takes vitamins or has any words of wisdom on how to live a long life, and her answer is always the same, “Vitamins? No! I don’t need them.” Barbara doesn’t believe in vitamins, but she does believe in eating healthy. She also believes in being independent and she walks everywhere or takes the bus.

                Diet is so important to good health, and the Standard American Diet is just “SAD.” I read a lot about nutrition and there is so much conflicting advice from experts. Do we eat carbohydrates or proteins only? Or are complex carbohydrates for fiber okay? Is the glycemic index important? How bad is sugar for us or do we burn that off first for energy? Do I only eat fruit on any empty stomach, first thing in the morning? Is juicing good for us or is fruit juice forbidden all-together? Does apple cider vinegar make us more alkaline instead of acidic? Does that matter? Does milk and dairy create excess mucus? Does turmeric prevent Alzheimer’s? Does ginger and garlic prevent inflammation? Is there science behind eating based on blood type? Is vegetarian the best diet? What is this thing flexitarian now, and should I only eat meat once in a while? Do I have to soak nuts? When did that start?

                Between Atkins, South Beach, Paleo, Vegetarian, Flexitarian, Vegan, Juicing, Fasting, Detoxing, Food Combining, Somersizing it’s no wonder people are confused!

                That’s just a sampling of the internet research on nutrition, the mixed messages I get, and the questions they raise.  HBO ran a series of documentaries on the obesity crisis in this country. My own Dad was a victim of obesity and it runs in our family, so I have a real sensitivity to people struggling to lose weight –it isn’t easy! I have been trying to lose a few pounds, tone up, and lower my cholesterol and it isn’t fun. Bad eating habits and a sedentary lifestyle lead to health issues. Ant-acid is the least of people’s worries. There is high cholesterol that can lead to heart attack or stroke, overweight problems and high Body Mass Index (BMI) leads to diabetes and heart disease, and we haven’t even begun to understand the correlation between weight and other diseases.

                Be in tune with your body, eat as many vegetables as you can, try to avoid processed foods, high sodium, limit your sugar intake, and eat regularly to avoid insulin spikes. Fake food is bad, fiber is good. Choose brown over white when it comes to rice and starches. Eat blue, as in blueberries, for antioxidants. Exercise is important – move! If you crave something, don’t over indulge, try to be satisfied with a taste. Drink lots of water. Eat only until you are satisfied and not stuffed. Don’t skip breakfast. Skip soda. I am not an expert or medical professional, but all the diets in the world boil down to this summary. It isn’t easy, but it can be done. You can do it! Stay healthy!

It's Always Something Syndrome

            A work situation struck a nerve with me today and brought back a common, negative emotion I faced as a Caregiver all the time called, “It’s always something.” My work day actually started off pretty good. I had meetings with a team I just started to work with down in their offices, and, as nervous as I was to lead the sessions, I felt the meetings went well. Then I got an email about another team that was looking for me, feeling neglected, and needed some support. Just when I thought things were under control, another area went to crap. Can you relate?

                As a Caregiver, I have hundreds of such stories, that just when things seemed to be going in the right direction, and I could almost relax (can never actually relax!), something would happen. Pull the rug out from underneath me. Poof! I would land on my butt. Start over. Try something new.

                The only way to deal with “It’s Always Something Syndrome” is to make a promise to yourself to do one thing at a time, not get overwhelmed. Stay flexible and light on your feet, ready to react and mobilize the best you can, as quick as you can. Trust yourself to make good decisions. Remind yourself that you are enough and can handle whatever curve ball life throws your way.

                It sounds trite and has been said millions of times, but you cannot control life, you can control your reaction to it. Stay positive and look for the silver lining in whatever comes your way. Yes, there is always something, but you know, sometimes that “something” isn’t a bad thing. It’s a good something.

Goodbye to My Gramps

In memoria di mia Gramps, non ti dimentichero mai. Meglio un giorno da leone che 100 da pecora. La mia vita a modo mio.

Two years ago today, my Gramps left the few here on earth to join the many in heaven. My Caregiver journey ended, and it was one of the saddest days of my life. Someone told me death gets easier as you lose more people you love. This inoculation-like theory isn’t true from my perspective, each death is individual, and regardless of the person’s age or however full the life, it’s never enough time and it is always sad.

When I was younger, I was scared of losing my Gramps. There was a time where I would’ve said my biggest fear was losing my grandparents or my Dad. Now they are gone. The interesting thing about it is that, in my Gramps case, he was ready and somehow that helped me accept and almost get ready. I wouldn’t go so far to say I was actually ready to say our goodbyes, but he had fallen, and the outcome was clear. He was even saying he was ready and totally accepting. Even more interesting, he was saying it a week before his fall. I remember calling his daughter concerned because he said it was time to leave and go live with her. I didn’t know what was going on, but I remember being afraid and very clearly knowing something was wrong. I definitely felt his soul was detaching and something was about to happen. When he fell and things went the way they did, I realized the disease process was already doing its damage and I believe that is what caused the fall that day. It was very hard.

When he fell, I called the ambulance, but he wasn’t in pain –yet. We quietly went to the emergency room and we called his daughters. The worst was yet to come. As I was alone in the ER in walked our dear friends, Linda and Greg. I called them and they showed up – I didn’t have to ask. The very definition of friendship and love, and I remember being so grateful. I went and got some things and stayed at the hospital for days. The hospital staff literally went and got me a special recliner for sleep.

Gramps got a little better and we were discharged to a local rehabilitation center. It was a decent place, with a private room for Gramps to do rehab, but he couldn’t do it. A week later, I had to make the decision to send Gramps back to the hospital or to hospice. It was heavy for me, but really, there were no options and there was no decision at all if I get honest. We went to hospice and Gramps was comfortable. The people were extraordinary. They asked me if I wanted to be there when he passed. I told them I didn’t think he wanted me there. I went home. I got the call. I never would’ve imagined the day would come when I would be prepared for my Gramps’s death, however, seeing him the way he was, I believe God prepared me for what was to come, and I definitely didn’t want him to suffer.

Today, I honor my Gramps. When I get sad, I imagine him in heaven with my Dad cooking him his favorite meals, and his dance card filled with my two Grandmas. He can play cards with Milty, his best friend, and all his goombas. He is better off. I miss my Gramps. I had the greatest grandparents, their love is always with me, and I am grateful.

Atonement

                I watch the movie “Atonement” on Mother’s Day every year, and I always have a good cry. My mother had a complicated pregnancy and she died having me. It was explained to me that she died and I was born, and somehow in my young mind that meant I killed my mother. I always have this guilt around her death. Why did she have to die at 21 years young? If she lived, my Dad and my Mom could’ve had other kids, so I just do not understand it. This is one of my first lessons in loss, life happens, and there is nothing that can be done to change it. Further, if you have faith that everything happens for a reason, and for a higher good, you would not want to change anything.

When it comes to my Mom, while I have faith there is a reason for everything, I admit I wish things turned out differently. I believe if she lived she would have been my best friend. Admittedly, it hurts me a little to see mothers and daughters at brunch today, as that is something I will never experience. I always wanted to know if she knew me or if our souls met as I was coming into this life and she was leaving. I saw the medium James Van Praagh once, and he changed my life with these few words, “She’s coming to me as a mother.” He went on to tell me things, that I will always be grateful. Say what you will about mediums, and psychics or intuitives, but I believe there are people with gifts. Maybe we all have the gift, but some people develop it more than others. Regardless of your beliefs around metaphysics, I personally left that brief interaction feeling better, with a new found belief that all questions ultimately get answered.

Today, I want to honor mothers, the original Caregivers. Mothers have the capacity to give great love, and they are extraordinary in all they do for their children and families. Women have months to prepare for their new role as “mother” and can mentally get ready for being responsible for a new life. It is still overwhelming, and I believe caregiving in all its forms is hard. Mothers well deserve this day of recognition.

God bless mothers. God bless my own mother. I thank her all the time for giving me life, and my prayer is that I carry on her legacy.  When I do a small act of kindness, I am told by family that I am just like my mother, and it is always a thrill for me to hear it. They say acts of kindness are long remembered after they are given, and people remember my Mom by her sweetness and consideration. That makes me happy.

Maybe there is nothing to atone for, but I always feel sorry for her passing, and I will probably always feel responsible somehow. In the movie, the main character writes a happy ending, to give the two lovers what they deserved, but never got in the real life. I believe in eternal life and in my mind, my Mom and Dad are together now, in heaven, looking down, sharing my life, and they are happy.

Happy Mother’s Day!

King of the Castle

              There’s so much talk these days of “Castle Laws” or “Stand Your Ground Laws” because of the Trayvon Martin death and George Zimmerman case in Jacksonville, FL. Trayvon was a 16-year old un-armed kid killed by George, a neighborhood watch volunteer, that felt his life was in jeopardy and used mortal force. We don’t have all the facts yet, so the outcome of the case is pending trial. However, it has me thinking about how a man’s home is his castle. Gramps was definitely King of his Castle.           

                We had the best setup a Caregiver can hope to have, in that I bought my neighbor’s place so Gramps had the illusion of total independence. When his daughters would visit, they had their own room and bathroom, and everyone was comfortable. My Dad tiled the floors so Gramps could easily maneuver between the bathroom, kitchen, and his bedroom in the wheelchair – all of which were relatively close together which made it easier to navigate.

                Setting up a safe and clean environment for your loved one is so important. It is the place to begin for Caregivers. If you are moving your loved one in with you, there are a number of things and steps you can take to make it more comfortable for everyone.

                Making it easy to get around is important, and removing hallway tables, and things that can obstruct the path is a good idea (and this is something the paramedics told me when they came in once – to remove a hallway table that didn’t need to be there). Finding ways to bring into the home things that are familiar to your loved one is a good idea, but limit it so you don’t bring too much with you and then have clutter. For example, bringing bed linens and pillows helps, and for Gramps we brought his hospital bed into his new bedroom. We painted the room a color that was comfortable and familiar to him, so it felt like home and made for easier transition. We also brought in his dining room set and all the tchotchkes, and framed family photos, from his own home with Grandma before she passed. As far as new items to help Gramps, we bought a recliner that goes to a full upright position to make it easier for him to get in and out of the chair. These are just a few things that worked for us, that may give you some ideas on your own options.

                There are a number of things I would do different as a Caregiver, but one thing I am most proud is how I was able to give my Gramps his own space so he always felt independent. He felt in control in his own home to do as he pleased, and I’d like to think that helped his emotional and mental health, as well as physical well-being.

Countdown to the Weekend

          When I was a Caregiver I almost preferred weekdays to weekends. Why? Well, there was routine. I had an aide during the week that I trusted with Gramps more than the occasional weekend help I had. There was a rhythm to the weekday that was lacking on Saturdays and Sundays. The only real advantage to the weekend was the fact I didn’t have to work professionally. However, I worked a lot at home. A typical Saturday morning included cleaning both my place, and Gramps’ place, dusting, vacuuming, and the bathrooms. I tried to wrap up the chores as far as going to the grocery store and bank on Fridays, to avoid the weekend rush. Now, I look forward to my weekends – they are free and it’s so liberating. I am lighter.

I learned a few tricks though from my Caregiving days that I still follow. First, I try to go to the bank and grocery store at “off hours” and times where I can avoid the lines and the wait times. Now with ATMS at the bank for deposits as well as withdrawals, and self-checkout at the grocery store, it isn’t too bad if you have to run to the store to a thing or two. Although generally, the bulk of my shopping I do during the week at times where I know either most of the world is at work or home putting kids to bed.

The other thing I learned that I bring with me into my personal life and will take with me forever, is the value of routines. My old boss used to ask, “You wake up in the morning, and then what do you do?” At work, there is a rhythm that may start with voice mails, emails, and a cup a coffee. At home, there is a rhythm to getting ready for the day, brush teeth, wash face, shower, get dressed, hair and makeup, breakfast and so on. There is comfort in knowing how the day begins and how it ends. The middle part is up for grabs and there is room for spontaneity –somewhat a luxury I couldn’t afford as a Caregiver.

I have a lot more free time now, more than I ever had in my whole life. I enjoy it. However, the other thing I learned is to try to fit enjoyment into my weekdays and not save all the fun-time for the weekend only. Sometimes it’s something light, such as a lunch with friends, or a dinner out, or even a walk around outside to window shop and take in the sites, doing some people watching. I try not to make work my life, and when my work day is done, I move on into the personal space of my life and make effort to enjoy that time as well.

The point of this is that there is a time and place for structure, and there is a time for the unexpected, but however way you spend your time, we are all given the same 24-hours, 7-days per week, so make the most of them. Counting down to fun-time could make you miss out on now-time and time is the one resource none of us will ever have enough. Don’t waste it! It’s our most precious resource.

In Spite Of...

           Some people have a way of pushing past the bad to make the best of things, in spite of whatever difficulty. My grandparents could always make the best of anything that came their way. I think most people of that generation, who came through the Great Depression, have a unique appreciation for what they have in life and enjoying the simple things. My Gramps was in a wheelchair, and my Grandma, before she passed, had lung cancer, but somehow she still managed to carry on, and enjoy life, in spite of the health challenges. They made time for friends, card games, dinners, and Church. They did what they had to do. I marvel at that now, and I laugh when I find myself complaining about bad weather, or traffic, or a headache, and all the little things that can throw a day off. Does any of that matter? I wonder sometimes if I am lacking the “in spite of gene.” My generation seems to be missing the resilience to push through life’s obstacles.

                I wonder if resilience can be developed. Is it nature or nurture? I believe some of it is innate and part of your individual makeup. However, a lot of it is learned. When you surround yourself with people who make the best of situations and play the cards they were dealt to the best of their ability, you learn to do the same. If you surround yourself with whiners and complainers, you will play small and act accordingly. I was fortunate to have good role models who knew what was important and did not sweat the small stuff.

                I learned a lot from my grandparents. In spite of it being years since their death, I miss them very much. I hold dear their ways and values, and the only way to make sure they live on, is to press on. I live my life with purpose, and the same good attitude they taught me. I strive to inspire myself and to be an example for those around me on how to live a full life.

Move It Or Lose It

              I have been working out with a trainer and reading a lot about staying healthy, and I realize that I spend a lot of time sitting at a computer, so even with the time at the gym, I am still at risk for cardiovascular diseases. My Gramps spent his days in a wheelchair or in his recliner. He could not ambulate well after his stroke, so it was hard just transferring to the commode, the recliner to watch t.v., or the bed at night. His everyday life became a workout just to get around. It is so hard for Caregivers to make time to workout and take care of themselves, but it’s also hard for our loved ones and patients to get moving. It’s also important to work out our minds as well as bodies, and we need to fit that in as well.

                I was just watching this show where this 92-year old man was playing golf and enjoying every minute of it. Isn’t that wonderful? We should all be so blessed. He said, “you’ve got to use what you’ve got.” It’s hard for people like Gramps because of their limited mobility, but even that, there is always stretching and breathing exercises at minimum. I read that breathing exercises, Pranayama, helped alleviate constipation, so I introduced that to Gramps. Sometimes I would have him blow bubbles to get him breathing properly. As far as mind exercises, there are crossword puzzles, word finds, suduku, and cards (Gramps favorite!).

                Find time and find something you enjoy doing to workout. It’s the best thing you can do for your health paired with a good diet. Exercise is the one thing that all experts agree is good for you, so definitely fit it in to stay healthy. Get creative with ways to fit it in for your loved one too. Its never too late to start, and you will feel stronger for it.

Retail Therapy

             I am working in Los Angeles, just blocks from the famous Rodeo Drive. There is nothing better than a nice walk on a beautiful day, and taking in some window shopping. I like to look more than buy, and I try not to indulge in retail therapy too often. When I buy things, I have a FIFO system, “For one IN, Find one to move OUT.” I never want to accumulate more than I can manage, and I am very careful to avoid clutter and waste (and debt!).

After the sadness, I cleaned out my Grandparents and my Dad’s homes and inherited a lot of stuff. I had a lot of closet space and, rather than deal with decisions to part with things, I just jammed them into the closets. If you came to my home, it never looked cluttered per se, but there definitely was a lot of furniture, a hodge-podge of chairs and tables, with no rhyme or reason to the decorating, and I told myself it was okay because it looked eclectic. If you opened the closet, it revealed the true procrastination of addressing the decisions that must be made – to get rid of their stuff.

With the help of an earth angel in the form of my handyman, Gus, I renovated a rental property. It came out so well, people started to make comments that I should leave my home and move into the rental because it was nicer than my home. This is when I realized drastic changes were necessary. With a lot of encouragement from Gus, I made the decision to get rid of the excess and renovate my home.

I did a lot of reading on organization and anti-clutter suggestions. Going minimalist had great appeal, and while I wouldn’t dare suggest that I am in that league, I am proud of the simplicity of my home. Before the renovation, I was okay with the way I was living, but I knew my home did not reflect who I was – I had outgrown it. Now, I am proud of the way my home looks, and feel it is more “age appropriate” and representative of where I am in life. It’s a great feeling.

While I think my grandparents and my Dad would be shocked at how much stuff I gave away, donated, and even threw away, they would be happy for me with the end result. It’s clean, clear, and simple – just the way I live my life.

If you find yourself in a similar situation, maybe you need to move your loved one into your home and get rid of their existing place or clear it out for a rental property, or even clear it out to sell it, you will be tempted to do just what I did – move in their things and keep it all. It becomes even more difficult if they passed away, because you will feel you need to hold onto the memory. I want to warn you not to go there. Try to be discerning with what you keep and take into your home, and do not feel you have to keep it all. Make the decisions on the first pass, rather than spend the energy to find storage, and move your own stuff around to make room, because months or years later you will realize you just delayed the inevitable decision to get rid of stuff.

Caregiver Courage

              There’s that word again. I think “courage” may be one of the most overused words in America, and maybe this post is also abusing the word, but this is how I feel. We hear about people having the courage to tell the truth, the courage to leave their marriage, the courage to stop drinking, and so on. John McCain wrote a great book, “Why Courage Matters” and I recommend it. He tells us about war heroes, a man who threw himself on a grenade to save his platoon, and other heroic acts of courage. That is undeniably an example of courage, and self-sacrifice. I believe it takes courage to be a Caregiver. Moral courage.

                When I took on care of Gramps, I was terrified. I really thought I could not do it, and I was afraid that one bad decision, or anything I did wrong, would result in Gramps’ death. It would all be my fault. I clearly under-estimated my Gramps’ health and strength, and over-estimated my role in his care. I’ve learned a lot since those days.

                First, I am not God and I learned that I have no control over life or death. I think this is one Caregivers should really explore for themselves.      

I learned that when courage is paired with faith, it’s a powerful force. Having courage is feeling fear, but taking action anyway. There’s always personal risk involved. Whether you believe in a higher power, and/or believe in your own personal power, faith combined with the courage to take action makes you unstoppable.

                There’s a big debate in the news this week because Joe Biden supported gay marriage, and many say President Obama, has not done enough for gay Americans in this regard (and we must remember, there is no more “don’t ask, don’t tell” because of President Obama, so there has been some improvements!). There is talk the President will legalize gay marriage if he is re-elected, but until then, he is playing it safe, and he lacks “moral courage.” I believe, as Dr. King said, “Justice delayed, is justice denied” and I want to live in an America where everyone has the same civil rights.

Before I digress too far, I don’t want to make this into a political statement on gay rights, but I want to explore this thing called “moral courage”, because it’s something Caregivers know all too well. We know it when we see it, and we know when we see someone lacking it. When you do the right thing, and take the high road, even at great personal risk or sacrifice, that is “moral courage.”

It’s not easy to care for another. “Easy” has no part in moral courage. If it were easy, everyone would do it. When it comes to caregiving, it would be easier to look the other way, and hope that someone else makes the effort. I am glad I made the decisions I did, and had the courage to see them through. Caregivers are courageous and I am proud of Caregivers everywhere.