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”.