Tips, Tricks, Winks, and Gotchas

               I love watching YouTube videos and particularly some of the makeup tutorials where the girls do their “hauls” of the various potions and products and review them. This is the equivalent of a “haul video” in that I wanted to put out there some things I learned that may benefit you.

                I’ve shared some tips already, but a great tip is to always stockpile the standard items. Stock up on toilet paper and non-perishable goods when they go on sale so you are never running out and last minute sprinting to the store. Keep canned soup and frozen vegetables on hand always for quick dinners. You can freeze croissants from the bakery or even keep cans of ready-made dough in the refrigerator for quick sandwiches.

                One of my favorite tricks is slipping fiber into your loved one’s diet. So many medications can cause constipation for your loved one, and combined with less activity, it isn’t good. I bought powdered fiber and would slip it into coffee, tea, just about anything to help get it in throughout the day. I believe it helps.

                My favorite wink is to let you know that doctor’s offices often have samples of medications and are happy to give them to you, if you ask. This could save you a few bucks, so don’t be shy! Ask! The worst they can do is say they don’t have any samples to give you. Actually, I am going to extend this and not only do doctor’s offices have samples, but I also got samples of Elizabeth Arden 8-hour cream and other moisturizers which was helpful for Gramps when he shaved and he had dry skin (again, partially from the medications).

                A gotcha is regarding medications. Not all medications are made the same. I am all for generic medicines instead of brand name – if they work for your loved one. I’ve learned that sometimes the brand name is better and other times the generic is just fine. The bottom line is that you don’t often get the medications right the first time out of the gate. Sometimes it’s not just generic vs. brand, but manufacturer, or dose, or even one medicine can have side effects that could require taking something else which is a slippery slope, so be careful.

We had a terrible side effect of one medication that I will share, as it was dramatic and really one of those moments where I prayed that Gramps was going to be okay in my care. He complained he wasn’t sleeping well, so I asked his primary care for something to help him at night. The doctor gave us a mild dose of an anti-anxiety pill. That night, Gramps had what I thought was a terrible nightmare. It was actually a hallucination and it was so real to him, it was terrible. It was all he talked about for weeks. It just wasn’t right for him. I switched to non-caffeinated iced tea and chamomile in the evening as natural alternatives. This was a scary gotcha!

The Chore-less Life

               The Mega Millions lotto is over $340 million this week and that inspires a lot of talk of “what if you win” fantasies. I was having this conversation with my friend and he said he would move into a hotel and not lift a finger to clean up or do anything he didn’t want to do ever again. Well, as a consultant, I actually live in hotels and spend more time in hotel rooms than my own home, and it got me thinking about all the chores I don’t have to do during the week (when I go home it’s another story). This chore-less life is a far cry from my Caregiver life. As a Caregiver, the list of chores and things to do is seemingly endless. It is overwhelming. It is the opposite of a chore-less life. It is a chore-filled life.

                But, what if you took a day to put aside the things you “have to do” and decided to take a break. Rest. What would happen? Can it be done tomorrow? Next week? Maybe, if you procrastinate, and put if off long enough, it goes away and doesn’t need to be done ever? I know that is hard to take in, so let’s break it down.

                Say you don’t like dealing with the mail, and getting it and sorting it every day is not “your thing.” What would happen if you sorted the junk mail to the recycle bin and didn’t even bring it into the house? That would reduce your mail pile right there. What would happen if you made a decision to deal with the mail once per week? Just put it aside, and do it in one shot instead of daily?

                What if you don’t like vacuuming or dusting, is there a gadget or appliance that can make this chore easier? Or do you have to do it as frequent? Better yet, can you afford to pay someone else to do it?  Housecleaning is not as expensive as you may think and, if you think about your time as money, it can be quite reasonable. If you have a few extra bucks and can afford it, maybe it would benefit you to have someone come in once per week or even just twice per month (or monthly for the hard cleaning)?

                What if you don’t like cooking and treated yourself and your loved one to dinner out or take out one night per week? Or maybe do “meatless Mondays” and make that a nice big salad – no cooking! There’s many decent deli options or, if you are lucky enough to have a place like Whole Foods around, there are a number of ready-made options you can buy. It makes life easier.

                Come up with your top 10 list of things “I don’t like doing” then come up with strategies to do them less or even eliminate doing them all together. It’s not the same as winning lotto. It is a way to a richer life.

Validation

              At work, “Validation” is the project phase where we look at the system and confirm what will work for us and identify what will not work for us. The system has a lot of bells and whistles already, so we aren’t starting from scratch, and we need to decide what switches to turn on and what we don’t want to use that we will configure custom. The point is that the system is not an empty box where you start with a blank canvas. Medications are a lot like that in that our loved ones probably already have various prescriptions they are taking that we need to know about. Medication management requires frequent and regular validation.

                Start with a list of medications, name, dosage, frequency, briefly what it is used to treat, and if you have multiple providers, note which one prescribed it and the date. It sounds like a lot of information and it does take effort, but it really is important. Once you get the basics down on the list its just a matter of maintenance, updating monthly or as needed depending upon how frequently your prescriptions change.

                I’ve met many people who feel like it’s not their job to track the medications they are taking because they feel like their doctors know what they prescribed or their pharmacists know what they filled. In this day and age of electronic medical record, that may well be. However, ultimately, the patient is responsible for his or her own care. That is the bottom line. We are all responsible and accountable for our own health. It is a good idea to know exactly what you are taking and why. It is also important for Caregivers to have this vital piece of information and help track this for the patient.

                It is a good idea to validate this list frequently with your loved one’s various doctors, nurses and providers to ensure it is current and he or she is taking what is absolutely necessary. It becomes complicated, particularly if your loved one is admitted to the hospital and they give new medications that could affect the current medications. Always ask questions of the case worker and hospital providers and definitely check with your primary care physician. There are so many statistics on how many accidental overdoses and over medications occur, not to mention all the celebrities that have fallen victim to accidental overdoses due to over medication. Validate any and all information you are given about your medical care in general, not just to be sure you are taking the right medications, but to be sure you are doing the best thing for your loved one’s overall medical care. It’s important.

A Caregiver Kickoff Meeting

At work we start projects with a kickoff meeting. We get everyone together, there is usually food involved, and we talk about where we are and the vision for where we are going, and at a high level, who all will be involved. My Dad’s funeral was my kickoff meeting to Caregiving.

                The family was all there, but we never had a formal discussion about who would take care of Gramps, other than I said it made sense for me to help him and that I would take care of him. I don’t think I thought it was a permanent arrangement, and I definitely didn’t think I would be in it alone. Details, details!

                This is another lesson learned and do-over I would take if I could go back in time. I would approach my Caregiver journey more like a work project and get everyone together and have a kickoff meeting to talk about “scope” and the vision for where we were going, how long, and the high level roles and responsibilities of everyone involved.

                You may scoff at this and think, that’s work, this is real life, and real life doesn’t work that way. You are right! That’s the problem! There is no planning! We don’t talk about these details and they get lost in assumptions. There are expectations that are not communicated properly and then there is frustration and negativity when things or people “fall short."

                I am not suggesting sitting the family down with a PowerPoint presentation, and charts, graphs or a project plan! No, no! I am saying however, to give some thought to how the family, your team, is going to move forward to take care of your loved one. Don’t go it alone. Approach it as a shared responsibility that you are all in it together. Talk about it. It isn’t easy. It takes effort. You may say it’s not worth that effort, but how do you know unless you try? You may think you know that no one is going to help and talking about it will only get you frustrated and get you nowhere. That may well be, in terms of people may not be receptive to helping, as I don’t know your family. What I do know is this – you will feel better for putting it on the table. You will have clarity. You will feel better, and really, isn’t that what this is about?  Making sure that you get what you need to be a Caregiver out there and make others aware. I didn’t do all this and believe me, I learned the hard way. At the end of the day, you need to know who is in it with you and who can’t be bothered. You have to put out there you own boundaries and what you are willing and able to do, and what you cannot do. Talk about budget and money, too. It’s important. It isn’t easy, but do it. Schedule a Caregiver kickoff meeting, it isn’t too late.

Litmus Test

              Litmus testing is a way to determine acidity and a single factor leads to a decision. As a Caregiver, every day I had one litmus test that was a guiding principle for everything I did, and it was simply this, if it were me, “would I want that?” If I were the patient instead of Gramps, how would I want to be treated? How would I want to be cared for?

                This guided every decision from the aides we brought into our homes and hearts, to keeping the house clean, to the food I bought and prepared, to the doctors and nurses we used. Sometimes I would go so far as to think, if I were the patient, how would my grandparents take care of me? They would want the best and not settle for anything less than the best care for me. They always had my best interests at heart and this was proven when I was younger and my Gramps took care of me. He always made me feel loved unconditionally, safe and wanted. I wanted to give him that in his time of need.

                I’ve heard stories where Caregivers feel so in need of help that they tolerate bad behavior from the aides, because they feel like at least someone is there with their loved and one, and what else can they do. Caregivers settle. Recently, I heard a story about an aide that played on the computer all day and didn’t even change the patient’s diaper. I asked her daughter, the Caregiver, what she planned to do? She said she was going to try to find someone else, eventually, but for now, this was it. It’s hard. It takes effort. I know not everyone is blessed with the aides that we had that were loving, and honest, as well as capable and knowledgeable. It’s a tall order. I have a friend who tells me our aide “had it good” and that I was “too good” to her. It bothers me, I admit, because to me, I know I was good to our aides, but you know, they were good to Gramps and they were good to me too! It worked for us!

                What is the factor that helps you make decisions around your loved one’s care? Do you feel good about the care you are giving? We all do the best we can, and at the end of the day, the important thing is that our loved one is safe, and they are getting the care they need and deserve. It’s important for their well-being, as well as our own. We need to feel good about our decisions and feel at peace. I sit here today, totally content with the decisions I made and the care Gramps received. He always said he was satisfied and went so far as to say things were “perfect, just the way he liked it.” It doesn’t get better than perfect, and that is what I pray for myself when my time comes.

Love Me, Love My Insanity

           Tonight, I had the pleasure of hearing Marianne Williamson at the Saban Theatre. If you aren’t familiar with her work, she has written many best sellers about psychological and spiritual development, based on the principles in the book the “Course in Miracles.” In this teaching, there is a belief that love is everything and anything not of love is fear, that we are all perfect beings, and our moments of enlightenment are about recognizing that we are already perfect, not about becoming perfect. She talks about the spirit vs. the ego and thoughts that are founded in ego are “insanity.” I am not sure I did it justice, but that is the gist. Based on these principles, as a Caregiver, I am sure I qualified as “insane.”

                My Uncle told me that I was very negative when I was taking care of Gramps. Let’s review. My Grandma died. My Dad died. I lost my career. I felt sick and in pain all the time. Oh, and I took on care of a 90 year old man. Maybe I was a little “negative.” That isn’t to say that I had a green light to treat people bad or to be unkind. Not at all. My behavior at that time wasn’t being harsh or mean to people. I just didn’t have much to contribute to conversations by way of small talk, or sharing exciting, good news. Like many Caregivers, I isolated myself.

                My Uncle is the greatest, and one of the few people that I have always been able to count on. I shared a lot of my problems at that time, so he had insight into what was going on and our struggles. Through the insanity, he loved me anyway. There were others that loved me too, but there were some that just never understood.

                Recently, I met friends for lunch and they commented about my being “prompt”. The “being prompt” comment is a backhanded compliment. When I became a Caregiver, running a little late, within 15 minutes, was routine. There was always time to give one more glass of iced tea, or clean up, or fit in one more last minute task. I thought people understood, but they didn’t.

                As a Caregiver, I own the fact that I let circumstances and difficult conditions get me off-center and even “negative.” I ran late. I was overwhelmed. Yep, I admit all of it. I have since given up on hoping people would understand, and somehow there would be allowance for the place I was in. There was no leeway and no tolerance. None.                  

                If you are blessed enough to have someone that understands and loves you through the insanity, they are a keeper. Wonderful! The majority of people just will never get it. They don’t have to get it, but it would be nice. How you react to all of it is your choice. Choose to react from your higher self. Love yourself through the insanity.

God is My Goose

            If you’ve seen the movie “Top Gun,” you’ll remember the character Goose that was Tom Cruise’s (“Maverick’s”) wingman. I love the thought of having a friend that loves you that is a constant source of support, co-piloting as you navigate your way through life. That’s when it occurred to me, God is my Goose!

                I always say, “God guides and God provides.” My core belief is that God will take care of everything. I mean you have to do the work and make the best decisions and choices that you can, but sometimes things feel beyond your control and out of your reach. Just know, if you need something, really need it, and it’s legitimate, have faith, God will make it happen. It’s coming your way. It’s already done. It may not be on your timetable, because God has a plan and it’s on his schedule, not yours.

                When you are confused, wondering how it’s all going to come together, it’s hard to give it to God, and just let him handle it. However, that is exactly what you need to do. Have faith. Believe. Release it. There is a higher power at play.

                When you are alone or just feel lonely, it’s hard to see God. Just know you are never alone. God is always with you, working to clear the path and make sure you get what you need to move forward and get to where you need to be.

When your feelings are hurt and you wonder who is going to look after you, remember God’s got your back. God is always in your corner. God is always looking out for your greater good. People can say things that hurt our feelings and do things that we do not like, but let it be. God will take care of all of that, too. Open your heart and let God heal it. He will help you see things differently to help you release the hurt.

Let God do some of the heavy lifting. It’s not all on your back. God is your Goose, your wingman, your pilot, your source. You are not alone. Find strength in knowing God is on your team and that is all you need.

Giving Within Your Means

             You’ve heard the expression “living within your means?” Well, today I want to talk about “giving within your means.” I was inspired by my friend, Peggy, who is by definition “a giver.”  We started our weekend with girlfriends getting together at Peggy’s house for a magnificent Saturday morning breakfast. We chatted and caught up as girlfriends do, and it occurred to me that Peggy, not only offers me support, but she is equally generous to all our friends – a special soul! A Caregiver!

                As us girls exchanged stories, a common theme was giving sometimes hurts, particularly in relationships with the men in our lives. It’s interesting how givers find takers, isn’t it? Then I started to think about Caregivers and back to my time with Gramps. I didn’t expect anything in return and it was never a give-to-get type of relationship – this was my grandfather! However, we all know how much energy and effort it takes to be a Caregiver. It occurs to me that one of the reasons that Caregiving is so difficult, is that the Caregiver’s energy bank is overdrawn.

                At church we talk about how you reap what you sow, you are never less for giving, and my favorite, “God loves a cheerful giver!” Giving is encouraged. Caregivers give everything we’ve got to our loved one, never thinking about ourselves or what we will get in return. The challenge is that we do not have unlimited energy supplies. Infinite resources are God’s business. We are human beings with limitations.

                In my Los Angeles gallivanting today, I stopped in at Ron Teeguarden’s Dragon Time, an herb and tonic medicine shop that I visited years back, and picked up some herbs for Gramps and I. Today, I couldn’t decide on a tonic, so Daniel suggested I try their “Supreme Shen.”  Interestingly, in Chinese medicine, giving develops Shen, which is about maintaining a healthy spirit. Giving is good for the soul. Giving within your means is healthy. Giving until it hurts is not of God.

                So the question becomes how do we meet the demands of Caregiving and doing what needs to be done, without depleting our own energy supply? I think the answer is fundamental and it’s a repetitive theme on this blog –take care of yourself. Do what must be done to make sure you feel good, stay healthy, and be conscious of your mind, body, and spirit. How do you feel? Exhausted? What can you offer when you are down and out? Not much. Don’t let yourself get to that point. Nurture your own soul. Replenish your energy reserves and make deposits to your energy bank by giving to yourself. Be your own Caregiver. When you feel good you have more to offer and can be a “cheerful Caregiver.”

Bounty of Blessings

              I wrapped up my work week and headed to the Grove in Los Angeles for a little shopping, people watching, and dinner. Life is good. My life is filled with a bounty of blessings and I appreciate all of it. I often wonder if I would have the same appreciation for the life I created for myself if I didn’t have the Caregiver experience. I know it’s a bit yin yang, but I think the output of the dark Caregiver days is that I never want life to be that hard again, and now that life is easy, and it is easy in comparison, I relish every delicious moment.

                I don’t want to make it sound like being a Caregiver is all bad – it isn’t. It is difficult, that’s a fact. I am a capable girl, high energy, and generally positive. Caregiving kicked my a**. I know I am not alone in that perspective of the experience. It's universal.

                The only positive things I can say about that time in my life is that I had my Gramps. I saw the best in people, and also saw the worst. I met some amazing human beings, his aides, that helped him (really “us” because they supported me too!). I tested my own metal and learned what I was made of. I took a look at the people around me and learned a lot about them and myself. Some lessons were good. Some lessons were downright painful. Regardless, I grew from the experience.

                Today, I take care of myself. Some may say my self-care now borders on the “indulgent.” I don’t care what others think or say (another positive by-product of being a Caregiver!). The message I want to send today is the same one I have been saying –take care of yourself. Don’t wait for your Caregiver journey to end to be your own Caregiver. Now. Not later. Would you treat your loved one/patient like you treat yourself? Would you neglect your loved one/patient? Of course not, so why would you do that to yourself?

                It’s cliché, but life is too short to put your own needs on the back burner, and not get out (or stay in) and enjoy yourself. You deserve it. You were given the precious gift of life and that life is meant to be enjoyed. Find a way. Find your center. Get quiet and find peace. Get your fill of fun. Soak it up! Now!

Family Oriented

             Do you notice how many people say they are “family oriented?” I used to be one of them. I don’t use the term anymore, because, for starters, I feel it’s so overused it’s not meaningful. The other reason is that to be “family oriented” by definition you should like the company of your family members and enjoy spending time with them. I am not so sure that suits me anymore.

                BC, before my Dad Carl died, my family got together so frequently that I never understood families that needed family reunions. We had Sundays, and vacations, and in between we had traditions that included various festivals, special weekends, local theatre and shows, there was always a reason for a get together. My Dad was the glue that held the family together. He had long arms and short pockets and was a giver. He took care of everyone.

                When Dad died it was just Gramps and I. We were on our own. I didn’t get this at first. I assumed that my big, Italian, family-oriented family would pull together. I was wrong.

                My aunt, Gramps’ youngest daughter, said she couldn’t take care of Gramps because she had a bathtub and he wouldn’t be able to get into it. They sell tub sliders for this purpose, so I never understood that excuse. I told myself she couldn’t do it and that was okay. My other aunt, my Gramps’ oldest daughter, said she could take him if I couldn’t. I never really felt she wanted to help Gramps, but again, I felt she had her reasons and it was okay. I remember the first time I asked if she could come for the weekend (they live about a three hour drive away). I was still trying to live my old life and was throwing a baby shower for my girlfriend. It was so hard and, although I am happy I did it for my friend, it was a lot of work at a time where my heart and head just weren’t in it. So I made arrangements with my aunt about a month in advance to come watch Gramps. There I was with all this shower stuff, decorations, party games and favors, and the gifts, when I got the call from my Aunt saying she wasn’t coming. This was the beginning of the realization that Gramps and I were going it alone.

                The whole Caregiver experience taught me a lot of things. I learned there is more to being family oriented than gracing your family with your presence at a BBQ or Sunday dinner. There is more to being family oriented than showing up to an extended family get-together with lasagna. Being family oriented is about more than hanging out with family when it suits you, it’s fun-time, and you have nothing better to do. My definition of “family oriented” is about making a conscious effort to spend time with and enjoy your family members, even when it’s inconvenient and takes effort, and even sacrifice to help a family member in need. If everyone agreed on a similar definition, I wonder how many people would call themselves family oriented.

Plan B

           When I became a Caregiver, taking care of Gramps was Plan A and there was no Plan B. No fallback plan. At work, I always have a contingency plan. If the system is down, I go to another system. If one environment isn’t available, I go to another one. If electronic copies aren’t available, I print paper. You get the idea. I build in back-ups so things go smooth. This was not the case when I became a Caregiver. I felt so overwhelmed with Plan A, there was no energy to focus on creating a Plan B. I put all my eggs in one basket, and prayed nothing would crack.

I had my own health issues at this time, all due to stress and anxiety. I remember my two doctors, primary care and gynecologist, were at the same office. One day, they both came in to speak with me about my drastic weight loss, and some lab results that they were sure had to be wrong because my sugar was off the charts, I was dehydrated, electrolytes out of balance and a host of other things that I can’t even recall (probably because I wasn’t comprehending it all at the time). Their concern was that Caregiving was taking a toll on my health and they went so far as to say Gramps would outlive me at this rate. My doctor even suggested that I checkout the home she put her own mom, insisting it was nice and that I should consider it.

                I have nothing against nursing homes or similar facilities, and in fact, I support them as a legitimate option for people who need to make sure their loved one is safe and cared for, and it’s not something the family can provide. Thank God these options exist! However, I never considered it for Gramps. I did start to wonder and worry that if something happened to me, what would happen to Gramps. There are a few points to this story.

                First and foremost, take care of yourself. It’s the same story you hear on airplanes, you put the oxygen mask on yourself first and then on small children and those needing assistance. Something I heard about that I never explored that may make sense for you, is respite care. Some facilities are short term and can give you a much needed break. I would also suggest thinking about designating a backup. After my doctor’s visit, I was scared that something could happen to me. I reached out to my minister and his wife and friends to ask if there is an emergency, could they help with Gramps temporarily, and of course, they said they would (and of course, the emergency never happened!).

Second point, sometimes you’ve got to put your Murphy’s Law thinking cap on and imagine what can go wrong and try to prepare. For example, doctor’s run late. Pack snacks, medications, water bottle, a magazine, whatever you may need. When shopping, stockpile basic supplies because there’s no need to run out of non-perishable items like toilet paper and paper towels. Freeze leftovers for quick dinners and don’t be afraid to stock-up on sale items and freeze them. Also, I always had some cans of chicken soup around just in case dinner turned into a fiasco, soup was a solid Plan B. You’ll come up with your own tips, but really think about your backup plans and how to give yourself options.

It Takes a Team

              I wished I approached Caregiving more like a work project, and started at the beginning and came up with a plan. At work, as a project manager, I always have a plan. When I took on care of Gramps, I had no plan. Worse, I had no team. I had no sense of budget. I was nowhere.

                When I start a work project, there are a number of preliminary tasks, “basics”, to get done. We figure out resources, budget, and something we project managers like to call “scope”, with the details of what we plan to do. I often think if I went through my Caregiver experience like a project, I would’ve been better off, starting with discussions on resources and “team formation.” Who is on your Caregiver team? There’s you, your patient/loved one, and who else? Doctors, nurses, physical therapists, and healthcare providers can be part of your team. Do you have family members helping? Friends? Neighbors? Church members? Are you paying for home health aides? Housekeepers? Do you have an elderly planning lawyer? A banker? A driving service? Or are you the butcher, baker, and candlestick maker all in one?

                I realized early that I needed help with Gramps. He was paralyzed and in a wheelchair. I had no idea how I was going to help him get up and dressed in the morning. Right away I set out to find a home health aide and called many agencies to find the right person. We were blessed to find a nurse, also named “Janice” but pronounced “Jah-niece”, that helped us. She was a true earth angel and a blessing like no other. She loved Gramps and we loved her. I can honestly say that she came into our life at our lowest point, and a good example of how God provides exactly what or who you need it when you need it (I mean how uncanny that her name was “Janice”!).

                We were able to keep Gramp’s same doctors and nurses that he had for years, so that was helpful because they knew him and his condition. Consistency is important for good health care. The familiar is comforting and really, you develop relationships with these people. They become your support system.

                One of the most important lessons, and again, another “do-over” I would take if given the chance, is that I would create a team to help take care of Gramps. I would ask for help, assign roles and responsibilities, and be clear about what was needed, by whom, and how often. I never did any of this! My recommendation is to ask family and friends for help. Don’t go it alone. If you can afford to pay for the support, even better! Do it! It takes a team to take care of your loved one and it truly is too much for one person to handle. Form your Caregiver team early –don’t wait. You and your loved one will be happy you did.

First Day Jitters

           As a Healthcare IT Consultant, I change jobs fairly often and first day jitters are something I experience a few times per year. The emotions are a mix of excitement of starting someplace new and meeting new people, and on the flip side the anxiety is about starting someplace new and meeting new people! I worry about the logistics and what it takes to get situated in wherever I will be flying into and staying, and then I worry about whether or not the people will like me and I will like them. I don’t worry about whether or not I can do a good job. I have about 20 years of experience at this point, and I have worked with enough teams and trust myself enough to know I can do it, and do it well. That was not the case when I became a Caregiver. I never believed I could do it let alone do it well.

                I worried constantly when I took on care of Gramps and I never believed I was enough. I also didn’t believe it was a permanent solution and that we, as a family, would figure out something better for Gramps later on. That never happened and he remained with me throughout. I felt like Gramps drew the short straw and got stuck with me. I can’t imagine what went through Gramps head and if he ever worried about the care he would receive.

                The irony of my situation is that I work in healthcare, albeit on the systems-side of the house, not clinical, however, workflows are a large part of what I do. The whole patient flow, information taken on appointment scheduling vs. check-in vs. checkout through wait times, referrals and insurance authorizations, best practices, through billing are a large part of my day job. None of that translated when I became a Caregiver. I thought I would take this professional insight and use it to navigate or healthcare system to take care of Gramps. It really didn’t work out that way. I can tell you it’s one thing to know to design a referral workflow and another to remember to GET the referral for the nephrologist visit before actually arriving for the appointment. Work world vs. real world was an entirely different animal.

                In retrospect, I wish I had approached caregiving a little more like work problem and I could’ve merged the two worlds for the better, starting with trusting that I could get the job done. I could’ve saved myself a lot of suffering if I had some faith in myself that I could do it and Gramps would be okay. So try to put aside your worries, your concerns, and calm whatever jitters you are feeling. Think about a past problem where you came up with a solution where you were sure you could not do it, but you did it. You are capable and will pull it off. Its counterproductive to allow negative self-talk to get you down and shake your confidence. Stay strong.

My Grandparent's World

                My grandparents had a ton of friends. I remember they were always off to a dinner, dance, card game, or, on Saturdays, all day beach picnics where about 25 of them would get together. They were always doing something, and surrounded themselves with a great group of friends that all enjoyed each other’s company. My Grandparents knew how to live.

                Some of their friends are still around, albeit, up there in age. Barbara is now 95, but she doesn’t look it at all. I always ask her about her “secret” and it really isn’t a secret at all. She walks everywhere, remains independent, and eats healthy. She tells me she doesn’t believe in vitamins, and complains that she now has to take an occasional antacid for acid reflux –that’s it! No other medications or pills! Isn’t that wonderful? Collette is another widow up there in years, but she looks amazing, still drives, and is very much independent. Mike and Marion are still doing okay too. Marion says there is a Yiddish saying about death that at some point, you are closer than further, and, as she puts it, they are getting closer. For Mike’s 90^th birthday, his son read a wonderful excerpt from the “Greatest Generation” and it was quite moving.

I keep in touch with them the best I can and every few months or so we all get together. It’s a chance for us to visit, catch-up, and for them, to reminisce about their happy memories. For me, for a short while, I get my grandparents back. Sometimes I even hear a story about my grandparents that I didn’t already know and it’s like being given a beautiful, precious gift.

                I enjoy these times, but it makes me more aware that my grandparent’s world is slipping away in terms of how our family is so different now. I know that everything is temporary and nothing remains the same, but when I visit with their friends, it’s like nothing changed. Lunch is an event! The table is always set just so, with different plates and forks for each course – no plastic! The first course is salad and bread, and then onto a feast, that most families do not even do at the holidays anymore! Marion doesnt let anyone help, she says her kitchen is too small! The main course is followed by fruit and nuts, and then onto coffee and dessert. We then played cards for a few hours, and after awhile it was time to go.

                I always get sad when I leave them. I have to control my thoughts and try to stay present, not partake in “future-ing” and worrying if I will ever see them again. I bless the beautiful day, and I thank God that my grandparents had such wonderful friends in their life that brought them great joy. I thank God for the joy they give me.

Do you feel lucky?

               St. Patrick’s Day has always been one of my favorite days of the year. I had an Irish setter when I was little. Green is my favorite color. I love the idea of everyone being Irish one day a year (and I have some Irish in me, too!). I especially love the idea of being lucky.

                When I became a Caregiver, I saw a silly Lindsay Lohan movie that starts off with her being very lucky – everything magically goes her way. Then she loses her luck, everything goes wrong, and life becomes hard. There’s a Hollywood ending with her finding her luck, romance, etc. Before I was a Caregiver, I related very much to the “lucky Lindsay” with things working out. I am not saying my life was a Hollywood movie with everything perfect, but, I will admit, life was good and I am sure from the outside to those around me, they would think I was pretty lucky. It all changed. I am not saying it was “bad luck” to become a Caregiver, but my Grandma and my Dad died and then it was just Gramps and I. Life changed. Things weren’t smooth sailing and life didn’t look so rosy.

                Life was harder, but I felt lucky that Gramps and I still had each other. It’s very popular to talk about having an “attitude of gratitude”, and so I too will suggest thinking about what is working in your life. What are you most grateful? Do you feel lucky? Allow yourself to feel lucky for what you do have and not be sad about what you lost or don’t have.

                The truth is that we make our own luck. It takes some effort to make a lucky life. Get out there or stay in. Wear green to be festive for fun. Have some Irish soda bread or have some corn beef and cabbage (and a pint!?) to celebrate St. Patty’s day. Why not? Feel lucky today and good luck to you in everything you do.

It's the Quiet Ones

                I’ve come to realize that Caregivers come in all shapes, flavors, and sizes. Some start with the pills and bills and go from there, whereas others, cannonball into the Caregiver pool and take full-on support of their loved ones. The interesting observation is that, the ones that do the little things talk about what they do a whole lot more than the ones that do everything and remain quiet. It’s the Quiet Caregivers that seem to do the most.

                I remember someone telling me how they take care of their mother-in-law and I asked about what it is they do. (I am always looking for tips!) I was told the family goes over once per week for dinner. Oh, so you visit her? That was my response. I don’t know how someone makes the leap from a weekly dinner to “we take care of a person.” I thought this was an isolated communication, but it wasn’t.

                Recently, a friend shared a story that a family member told her they were taking care of their aunt. “Taking care” to this person meant writing three checks a month for her bills. I guess she had no sense that she was talking to my friend who cared for her parents, and quite literally did everything for them. My friend is lovely and she suggested to this person to not talk about “taking care of their aunt.” When my friend told me the story, she said, “Can you imagine? She was bragging! Look at me, I am a Caregiver, over writing three checks a month!”

                Personally, I didn’t talk much about what I did for Gramps. For one, it was overwhelming. I kept a notebook at that time and it’s filled with long “things to do lists.” I can’t even look at it now, and can’t imagine how I made it through all of it. The second thing is that I didn’t feel like it was anyone’s business and I didn’t want to in anyway embarrass Gramps. I think on some level he knew what was being done for him, but it wasn’t discussed. I didn’t want him to feel like a burden and, frankly, I knew the family wouldn’t get it. The few times I mentioned some things they were not supportive. (this is putting it politically correct!). I got to a place where I didn’t want to talk about what I did as a Caregiver. I felt sharing things with friends was another way I became more different from them – it just wasn’t good. When I did get invited for dinner or something I knew I couldn’t do, I would simply say, “Sorry. I am not available.” It was better than explaining I had to get home to help Gramps. People didn’t understand, and I got to that place where it was okay, they didn’t have to understand.

                Another part to this is a category I call “the unspeakables.” They are as they sound. The things we all know we do for our loved one as their health deteriorates. “Stuff happens” and lets leave it at that – the “unspeakables.” Caregivers only get on-the-job training. Most of us (and I know there are exceptions) have no clinical background and nothing prepares you for the unspeakables, you just deal with it, and try to do it in a dignified way for both you and your loved one. It’s delicate to be sure. The pills and bills and the dinner Caregivers don’t deal with the unspeakables. Not all Caregivers are alike. So today, I salute the Quiet Caregivers everywhere.

Your Turn

             I had a wonderful day out yesterday with my Aunt Linda (not really my “Aunt” but she grew up with my Dad and we are Italian, so everyone older gets called “Aunt” or “Uncle” out of respect). We ran around to this wonderful mixed-use community called the Village of Gulfstream here in FL and had lunch and shopped the afternoon away – ladies of leisure! Linda took care of both her parents while raising her children. She was what is in that “sandwich generation” before that term became fashionable. She understands about Caregiving, and the highs and lows of it all and I have learned a lot from her.

                I had an elderly planning attorney to guide me through the paperwork that I call “the Particulars.” I will save the gory details of all that was involved there for another day, but one of the things I did was apply for Medicaid for Gramps. It took two years to get approved for the program we needed which was a community funded and run program that gives home-health hours. When we finally got approved, I was elated. It was ten hours per week, Mon-Fri,  5-7 pm. It may not sound like a lot to some, and believe me, my family was the first to comment, “What is that? Was it even worth it? Ten hours is nothing!” They never got it. To me, at that time, ten hours was as good as winning lotto! So we got this wonderful nurse to come in and I was really nervous because she was appointed by the program and I was worried it would be someone that Gramps didn’t like. The actual opposite happened- he loved this woman - as did I! A true earth angel! What a blessing!

                Even though the nurse was there, I found myself still rushing to make sure dinner ran smooth, and one day, Linda and her husband Greg came by and said, “lets go.” They were “kidnapping me” to get me out to teach me a lesson that when the nurse was there, I did not need to be there. I had to let go and trust it would go well. This lady already proved she was good with Gramps, so I wasn’t sure why I still felt the need to be on top of it all. This was respite care time for me.

             So off Linda, Greg, and I went on our adventure and we found this local lady selling biscotti in the oddest warehouse-type area – very unexpected and fun! Linda shared with me the story about how, when she was taking care of her parents, my Grandparents would come by with a pizza and tell her to go do her thing for a few hours because they were in charge now! She said she never forgot that, as it was such a welcome break. It meant nothing for them to do it, but it meant everything to her. Linda says, “See. Everyone gets their turn in the prayer line.” Give prayers freely, generously, but when it’s your turn, accept prayers graciously.

Menza Menza

        It’s a Sicilian-Italian thing, but if you asked Gramps how he was feeling, he always responded, “Menza Menza,” meaning “half and half” or “so-so.” I was going through his medical records and sure enough, under chief complaint there are daily comments and it reads, “Pt states he feels half and half today!” I laughed over the fact this made it into his medical documentation. When Gramps would say this to me when I was younger, and frankly, he was younger, my response would be, “does that mean you are half good, half better?” I wasn’t so lighthearted about it when I became a Caregiver. In my Caregiver heightened-sensitivity mind, I assumed something was wrong and that it immediately had to be a health issue and my Woody-Allen-monkey-mind took over and I became neurotic. I would ask what was bothering him, was he feeling okay, what was wrong and on and on. A game of 50 questions would ensue, probing to determine a diagnosis, because I was certain he must be sick and this could be sign of something fatal and that I had to do something to make him feel better! The bottom line was nothing was wrong with him, and he would just have an off-day sometimes. Don’t we all?

I tried to make things perfect for Gramps. That was actually “his thing” in that if you asked how things were going, he would say, “Everything is perfect, quiet, just the way I like it.” This gives me a lot of peace now, knowing he was content, but it was hard to maintain that kind of environment. I ran around like crazy, with long to do lists, routines with set times, cleaning, specific dinner rotations, and it was hard. I don’t live in a perfect world and I am not sure why I thought it necessary to create one for Gramps. I learned to leave perfection up to God, because nothing is perfect, and it’s not a realistic goal. In my “List of things I did wrong as a Caregiver”, it was the quest for perfection. Don’t go there. Don’t even try it. Do the best you can. I am proud that I was a “complete Caregiver” in that I didn’t stop at making sure he ate and took his medicines and he had a roof of over his head –all good starts! I took it to the place where I was concerned about his emotional well-being as well as physical. I don’t think that’s a bad thing at all. When you love someone, you want them to be happy or at least content. Where it goes astray and I may have been misguided is the effort that went into this and the price I paid out of my own happiness bank. Everyone – you and your loved one –everyone is entitled to an off-day. A day where you feel “menza menza.” Let it be. Don’t try to control everything. At work, we often say, “don’t let the quest for perfection be the enemy of good enough.” You can only do so much for someone and their external environment. Their internal workings, thoughts, feelings aren’t anything you can “fix” and it’s not your job to do so. It may sound obvious to you, but I wish someone told me this years ago, so that is why I am sharing it with you now.

What It Takes

I am a Consultant for Healthcare IT implementations, and I am frequently changing jobs. Updating my resume and going through the interview process is inherent in my line of work, so I am often questioned on my qualifications. The other day after another interview, it occurred to be, no one asked me if I was qualified to take care of Gramps! The most important job ever!  The painful reason is simple, no one else wanted that job. Maybe that is unfair, and maybe others would’ve stepped up if I had not, but the simple fact remains. When Gramps was in need, I stepped forward, and others stepped off. Anyone would do, as long as it wasn’t them.

I was talking to a girlfriend yesterday and she was saying how she was covering for someone that left her company and that required getting to work at 4am. She isn’t a morning person. So, after a few weeks of crack-of-dawn days, the next applicant that came along was “thee one.” She could not wait for the new hire. As she put it, her thought process was “Is she breathing? Yes? Okay, she is qualified, done, congratulations!”

When I became a Caregiver, I really did not know if I had what it takes to take care of Gramps. I was terrified. My prayer to God was, “please don’t let him die.” Every day, he made it through felt nothing short of a miracle.

One of my first experiences with taking care of Gramps was one for the books. Gramps was in a wheelchair and I was putting him to bed in the hospital bed. He got into bed fine, but in getting in the bed he knocked the phone down behind the bed! Now the phone is beeping because it’s off the hook. So I tell Gramps to just stay in bed and I can get the phone. I shimmy under the bed, and as I am grabbing the phone, the gate to the hospital bed falls and literally traps me under the bed. Between the gate, the walls, and the footboard, I am trapped –no way out. So Gramps was like, I can help you, and I see he is trying to get out of bed. I was like “No! I am okay, you stay put, I will be out in a second.” I laid there for a good while, and yes, I started to cry (quietly! I didn’t want to upset Gramps). I remember thinking, well, at least I have the phone, I can dial 9-1-1- if it comes to that. I was scared. Fear was all I felt back then. This time, my fear was that I just couldn’t do it and someone was going to get hurt. I mean, how stupid was this?! Eventually I Houndini’d out of that mess and I am still not sure if I fit between the gate bars or what, but I do recall that I felt totally ill-equipped to take care of Gramps. I didn’t know what we were going to do. I felt sorry for Gramps, getting stuck with me, and frankly, I felt sorry for myself for putting us both in this position.

We made it another three years together. We shared a lot of adventures like this one. Here is what I learned…What does it take to be a Caregiver? Love. One word. Plain. Simple. It takes love to do what we do to take care of another human being. Some things will go fine. Others not so fine. If what you are doing is based in love, truly coming from the heart, God provides and it will work out. You are enough. You are qualified. With love in your heart, you’ve got what it takes.

Me-Monday

            Years ago I incorporated “Meatless Monday” into my weekly routine. I am not a vegetarian, but I thought it was a good idea to cut back on meat, better for my health and the environment, and when I heard about Meatless Monday, I liked it and adopted it. I propose Caregivers adopt “Me-Mondays.” Nope you don’t get Monday off. Sorry! (Well, unless you find someone to cover for you –which you can do if you ask for help). However, I suggest that you kick-off the week with a plan to incorporate something nice for yourself into your week. You can do it! Today’s post sounds like some of my other posts, but I feel so strongly that Caregivers need to work hard to keep their identity, remember what they like to do and enjoy, that I will repeat this over and over, to encourage you to actually do it. These can be small – like reading a blog, surfing the Internet, reading the paper, a book, a magazine even. How about a book club? How about hosting a book club? You can go bigger, like taking an hour for a favorite tv show, or a few hours for a movie on cable (or even go to the movies! Wouldn’t that be lovely?!). If you have more flexibility maybe you can meet a friend for lunch or dinner. Maybe you can go play poker or to go to a local casino. Can you find a way to get out? How about going to the gym, taking an exercise class (Zumba!), get a personal trainer and make it a set time. Plan it and do it. Make it happen. It is the best thing you can do to relieve some stress and get rid of tension. It will be something for you to look forward to doing. This should not be a one-and-done thing. Weekly there has to be sometime for you.

        If you can find a way to incorporate your loved one into your Me-time, that is great too! Gramps was in a wheel chair and I would host coffee nights and have friend, his niece and whomever was available come over to our home. It was nice for everyone to get to see each other. It took planning –and I am not just talking about having nibbles on the table –that was the easy part! Getting Gramps ready, making sure he was up for it, the “behind the scenes stuff” that Caregivers understand but no one else sees, was a little more challenging. It was worth whatever effort because it worked out well and this was a nice treat.

      Every Monday plan a little “me-time” that you will fit in during the week. Give yourself permission to enjoy your life. Take the time. Find the way. Make it Happen! Happy Me-Monday!

Sunday is Sad-Day

I used to enjoy Sundays as time spent with family.  I come from a big Italian family that is exactly what you imagine. We cook and bake. We do the seven fishes on Christmas Eve before midnight mass. Sauce on Sundays (that we sometimes call “Gravy”). Traditions. When we didn’t have big get-togethers, I still spent a lot of time with family on Sunday. My Grandma would go shopping after church, so I would get to her house a little early and hangout with Gramps. We would read the Sunday paper on the patio and just talk about whatever. Then Grandma would come home and we would hang out some more. Grandma loved to cook and pasta e fagioli was her specialty and my favorite  -total comfort food. She would make VATS of it! She said it was so I would have enough to take home! How great is that? I knew those days would end eventually, but in my mind it all ended too soon. Now I am grateful we shared that time because I do have happy memories.  However, I find that Sundays are the days I miss them all the most – my Dad and grandparents. Sunday has become “Sad-day.” Not every Sunday, just sometimes. I definitely have some lazy, quiet Sundays that I do enjoy, but there are those hard moments.

Sadness is normal. It’s not chronic or depression. It’s fleeting. I can get up, do what I need to do and keep moving. I can shake it off. Depression is more debilitating and makes it harder to get through the day. Caregiving has so many demands and it is so difficult watching your loved one deal with health issues. Unfortunately, caregiving and depression often go hand-in-hand. If you are feeling down and you just can’t shake it; if it’s impacting your day-to-day functioning, where its hard to get out of bed and you feel lethargic, exhausted all the time, and emotionally drained, please seek help.  Don’t wait. It took me a long  time to seek out a psychiatrist, and when I did, I learned that I needed anti-depressants for a little while. It didn’t mean I would be on medication forever (which is why I resisted going for help and it took a long time to reach out), but rather, a short term solution to help me get me get in control of my emotions, get stable, and feeling like myself again. I don’t know why I waited so long to do it. I now know the difference between sadness and depression. Do a self-check and ask yourself, “how am I feeling?” Am I sad? Am I numb? Am I lazy or am I lethargic? If you have any concerns, seek out the help of a doctor or therapist for yourself. Don’t suffer. Don’t get stuck, get moving to get yourself on the road to a better place.

Try to make your Sundays “Sunny”. I am sure that reads corny, but I live in FL, the Sunshine state and it’s catchy to me! Enjoy the rest of your weekend!

This One's For You

I went to an Elton John concert last night. I had a great time and I am almost giddy. It wasn’t so long ago that concerts weren’t even a thought. Not a remote possibility. Well, that’s how I saw things back then. With everything to do to take care of Gramps, I couldn’t imagine fitting in anything fun for me. It was all about him. I made it all about him. Choices. Running the house. Paying bills. Going to doctors. I spent time doing what I had to do, and not a lot of time on what I like to do. I am not complaining. However, when I look back now, I realize that I could’ve fit in a little more me-time and a little more fun time. Yes, it would’ve taken a lot more effort than it does now. Now, I get myself ready, jump in a car and go enjoy. Simple. Back then it would’ve involved planning, and, gasp, asking for help. This is one of the things, if I could get in my time machine and go back, I would do different.  Make time for yourself. Find ways to enjoy your life. Caregiving has a way of consuming your life, but don't let it.

People would tell me I need to get out more, and frankly, I resented hearing it. Maybe in reading me tell you to find some “me-time” you will feel that same resentment, and that I “don’t understand.” I DO understand. I understand now that if you don’t take care of yourself while you are taking care of your loved one, you are no good to anybody. Yes, the tasks and chores get done, but at what price to your own well-being? I had a lot of health issues during this time and I will save the stories for another day, but I promise you, I have been there and I don’t want you in that dark place.

So how do you find a way to do something for yourself? When I can’t figure something out I “work backward.” Start with a list of things that you enjoy doing. Going to the movies, exercising, golf, getting a manicure/pedicure, a facial, massage, whatever. Then ask yourself what would it take to make that happen? Money? Can you spare it or do what it takes to put a few dollars aside over a few weeks to do it? Do you need someone to stay with your loved one? Can you go do this special time while they are either at the doctor, asleep, otherwise occupied with someone else? Can you ask someone to stay with your loved one while you duck out?

Where there is a will there is a way. Find the will to make the way.

Last night, Sir Elton John found a way to play for three hours straight, no intermission. He ended with an encore of signing autographs for fans, thanking them for coming, saying he wouldn’t do this at this stage of his life if it wasn’t for them, and he ended with “This One’s For You.” Do something for yourself, enjoy it, and hear Sir Elton in your head singing to you, “This One’s For You.”

Do Good, and Forget About It

Grandma always said, “Do good, and forget about it. Do bad, and think about it.” It’s truly words to live by. If Caregivers had a mission statement, this would be it! We do good every day. The “do good” part is easier than the “forget about it” part. If you are like me, the "think about the bad" part is all too easy. Some days that’s all I would see. I can send myself on a guilt trip like no other. I always felt, no matter how much I would do, it was never enough and that in my mind was “bad”. I would look at my long list of things to do and if I missed something, that was the thing that kept me up at night. I would feel bad. Guilty. Frustrated.  Upset. Consumed by it to the point of having to get that one thing done first thing the next day. Not healthy. Fear-based.

I have a friend going through a bad time with her health. Her husband is the Caregiver, taking time off to care after her, their son, and the house. He is stressed out and he feels unappreciated. It’s understandable. We all want those gold stars we used to get like in kindergarten. With caregiving, they don’t always come when we want, and honestly, sometimes they never come. If you are caregiving for someone that is incapacitated, Alzheimer’s, dementia, or any diminished mental capacity, they may never show you appreciation. In any relationship, there are times where we don’t feel appreciated because it’s not shown to us in the way we want it to be demonstrated. This is where the “forget about it” part comes in. Can you do what must be done without needing those gold stars? Can you give, give freely, and expect nothing in return? Can your inner voice telling you that you are doing a good job be enough?

There is no roadmap to this kind of self-satisfaction. There is meditation. There is therapy. There are options. Whatever road you take, you must give yourself a break. Caregivers get up in the morning, set out to make it a good day, and we all do the best we can with the 24 hours we are given. That’s it. No more, no less. There will be bumps in the road. Do the best you can for your loved one and for yourself. Yes, you are important too! Do good for you!

My Gramps loved me. I knew this in my core. I didn’t need a “thank you”. I think that certainty came from a lifetime of good experiences with my grandparents, making deposits in my happiness bank. When the time came for my Gramps to make a withdrawal, my happiness bank overflowed, and I was able to give back freely. We were rich! Rich with happy memories stored up over years. For me, I wasn’t doing good for anything in return. I was living my values and there is peace in doing it.

If you need a “thank you” today, let me end this by giving it to you. Blessed are the Caregivers for they shall be cared for! You are doing good. Let whatever perceived “bad” go. Go easy on yourself. God bless you and your loved one.

The Night was Sultry

             I categorize life events as “BC”, Before Carl (my Dad) died and “AD”, After Death.  His death and my birth as a Caregiver were significant life events. 

BC I was like a cross between Ally McBeal, Charlotte York from Sex in the City, and Giada DeLaurentiis (not in terms of looks or cooking talent, but in terms of pride in Italian heritage). I was a good girl that grew up in a Long Island suburb, very proud of my very large, close-knit Italian family, and became a successful career woman. Once I worked for a Director who told me that she took two years off to care for her mother. I remember thinking I could never do that. The lesson there is that God will present opportunities to test your own metal and to do what you think you cannot do.

AD I was more like a cross between the Helen Harris character played by Kate Hudson in Raising Helen and the Owen character played by Danny DeVito in Throw Mama from the Train. These movies give an interesting portrayal of Caregivers, don’t they? Helen Harris takes on care of her nieces and nephew after the loss of her sister and brother-in-law, and must give up a career she loves and make changes to do so. “Raising Helen” is a great title because she gives up one life, which the character thought was pretty great, and raises herself to a new level of fulfillment and happiness. I can relate to this very much and was just reading about how, while the downside of Caregiving is largely reported with health issues and stress to the Caregiver, new studies are showing that Caregivers are a strong and resilient group, and there actually is some evidence to support that Caregivers go on to do alright by themselves (“caregiver gain”). 

         Where my life took on an “Owen-esque” quality wasn’t so much that I fantasized about “criss- cross” and having my Gramps killed or anything remotely like that –after all I was the granddaughter! Gramps and I got along beautifully 99% of the time. There were definitely those “the night was sultry moments” like in the movie, where I was struggling to figure something out, exhausted, couldn’t put it together, and with clarity Gramps would come out with the solution. I think we all have those “he’s in better shape than me moments!”  I became Owen-esque in terms of loneliness and isolation. That first year I took on a job working remote. I didn’t leave my home other than errands and a rare coffee with friends to try to sustain whatever relationships I could keep. I could not relate to them and small talk took serious effort. We were at a different place. I was in crisis. I was taking care of Gramps, and my Dad and Grandma were gone.  I was still grieving and in pain. Hearing about their job or marital issues seemed so distant to me.  I did not take good care of myself at all. Eating and sleeping didn’t happen. Showering was reserved for days where I had to venture out into public. Back then I felt no one understood what I was going through. I am sure you can relate.

Introduction: The End Marks the Beginning

My introduction to what it means to be a Caregiver started by watching my Dad take on more responsibility for my grandparents. My Grandpa had a stroke and my Grandma’s health was deteriorating. He took over “the pills and bills”. Then my Grandma was diagnosed with lung cancer and died. Hardly any time elapsed between the doctors giving us the dreaded diagnosis, to the next memory of being in the limo on the way to the funeral.  Everyone kept saying it was a blessing that it happened so fast.  I did not know what they were talking about. My father assumed care of my grandfather.  Then the unthinkable happened. 

On August 9, 2007, I arrived at my Dad’s home to see Grandpa in his wheelchair, at the dinner table, and my Dad on the floor turning purple.  A small vial of nitroglycerin was on the table in front of him.  I remember that distinctly.  My Dad’s girlfriend and her daughter arrived on the scene moments before I did and began CPR and called 9-1-1.  I begged God for more time for my Dad.  I begged my Dad to hang on.  I begged the paramedics to keep going, trying compressions, paddles, –anything.  I was so desperate.  My Dad died that day and his death was a horrible shock. Calling to tell people the sad news was surreal. My father died and invariably they’d ask, “You mean your grandfather?”  No. When I look back, things are fuzzy and grey.  I remember it was important to me for Grandpa to stay in familiar surroundings, to feel comfortable, and to let him know he was wanted.  Moving Grandpa to a new home would be too unsettling.  That was as far as I got in the deliberation process when I decided I would take care of Grandpa. 

The day my Dad died, I assumed responsibility for caring for my then 88-year old Grandpa, Philip (I call him “Gramps”).  I did not know the commitment I was making or for how long I would be in this new role, but I do know it was my decision.  A Caregiver was born.