As I mentioned, my journey is unique, but the common underpinning is that I was the caregiver while my parents were in their home, and I’m still the caregiver while they are in the nursing facility. I was and am their primary caregiver. You may not have the nursing home as a wild card in your experience, with either one or both of your parents as residents, but whether they’re at home, in a nursing home, in a long-term care facility, in an assisted living facility or living at your home, you need to be prepared to alter your life considerably.
You need to be the brave advocate for every essential and non-essential issue that presents itself.
Be prepared through this journey to give more than you ever thought possible, which can be daunting and result in a very unexpected impact on your financial and personal well-being.
EMBRACING THE DRAIN
- The financial drain. Regardless of how you have your parent’s finances assigned and allocated, you can rest assured there will be some impact on your personal bank account. It just happens. The unexpected grocery items, gas for the automobile, various household expenses that you end up paying for, tips to get their hair done, gifts throughout the year but especially at Christmas for specific staff, etc. You can choose to record it all, or simply let it go and tell yourself it’s the cost of doing business as a caregiver.
- The time drain, or as I like to call it the “time crunch.” In my case, I have two parents in a nursing home, so I’ve got double duty. But it’s more than the visitation, which can be as often or seldom as you need it to be. I have chosen to visit frequently, not only to give comfort to my parents, but it’s vital the nursing staff recognizes the effort extended. But it goes beyond that. It’s also the on-site review meeting which is a condition and status report by the nursing staff, the numerous phone calls I get on a weekly basis with updates on their medications or health conditions, the special events where it’s a command performance that you show up, the countless trips to Beltone to have my mother’s hearing aids adjusted, and the shopping trips to Costco, Target, Walmart and others for various things they need outside of the provisions provided by the nursing home. Inasmuch as they are in a care facility, trust me, they still need “stuff” all the time. Did I mention the party (in a previous blog post) we just threw for mom—about 10 hours of preparation.
- The mental drain. If you have a heart and a conscience, then you will soon discover that all of the above begins to weigh very heavily on your spirit and emotions. If you’re a strong person with a very strong and optimistic partner like my BoomerGuy, you can weather the storm. If you’re not so lucky, it takes a mental toll on your ability to cope and get through the day. My recommendation is to not chew the elephant all at one time. Rather than approach the large assignment of whatever you have planned, take smaller segments, work on those, and accomplish them before moving on to the next. Otherwise you might find yourself spinning out of control attempting to manage a single, larger task that becomes unachievable.
- The physical drain. I see in the nursing home the caregivers are getting more worn out. However, I’m not referring to the employees, I’m talking about the family members that attend to the needs of their loved ones. Don’t think for a minute that just because your parent(s) is in a nursing home, there is nothing to do but visit. I call us the bag people, as we are always toting a bag of something to address their needs: clothing, snacks, meds, specialty items, etc. At this stage of the game the parent is being looked after quite well, unfortunately you are not—you and I are getting worn out in the process. Regardless of their mental or physical status, if you’re like me, you don’t want to burden them with anything too serious. So keeping the conversation light and carefree while you’re doing all the heavy lifting does indeed take its toll. And trust me you are not alone. As I speak to people in all walks of life throughout the day, Boomers and other seniors, many are going through this very same emotional and physical drain.
- The personal drain. My BoomerGuy does all the bill paying, contract work with Medicare, contract work with the nursing home, and any and all legal requirements. It’s one thing to ask me to be the primary caregiver, but it’s another thing entirely to ask your spouse or significant other to step up and cover all the other issues. It imposes a significant demand on your personal relationship because there’s less time to spend with one another, moreover, it’s a lot to ask of another person to step in and take on that responsibility. Frankly, I’m really lucky, because what he does I could not do. He’s used all that he has learned in the corporate world to balance the lives of my parents, as well as our own.
- Making the caregiver feel appreciated. Well, I’m not talking about you, because chances are there are very few kudos, gifts or compliments coming your way, unless you bestow them upon yourself. I’m talking about what you need to do to make your in-home, extended care, nursing home caregiver feel appreciated. We found when people experience gratitude from you for their talents and contributions, even though you’re paying for your loved one’s care, they’re more productive and attentive, and respect the needs of your loved ones even more. However, in our case, because there are so many employees and support staff in the nursing home, we were concerned the employees would be routinized and our efforts seen as impersonal and meaningless. So here is what I do on every visit:
- Regularly take time to say hello to everyone; these interactions will become valuable points of connection between you and the staff and individual employee;
- Give balanced and authentic feedback that make the employee feel valued. In other words, point out to them something you’ve observed and make it personal and noteworthy;
- Thank them for their contribution and efforts, and whenever possible, give them a hand-written thank you note;
- Gift giving at the holidays is a sure way to engender and endear their support while you’re not present, the key is to express your appreciation in a way that feels natural to you and the recipient. We had over 40 different gifts over the Christmas Holiday for all the different departments: front desk, administration, maintenance, dietary, recreation, and all the various nursing desks and key players. Each gift was tailored to what we thought would be meaningful to the recipient, so it did take some time shopping and gift wrapping, but it paid off in a big way;
- Special recognition should not be overlooked but be careful how you hand it out. There are several nurses that go above and beyond and I will most certainly purchase something of unique value and present it to them with a big thank you throughout the year. I give it to them in a very vanilla bag so as not to not run the risk of alienating other staff members who did not receive anything, You definitely don’t want to be accused of showing favoritism;
- My BoomerGuy will occasionally write “rose letters” to the Administrator acknowledging the “above and beyond” outstanding contribution of certain employees, special events, and the quality of the nursing home, in general. He will always encourage the Administrator to post the letter and share it with all employees;
- Aside from gift giving, the best part of appreciation is that for the most part it’s free, but it does consume a great deal of your time (ah, the dreaded time drain). The culture you spread is invaluable, and you will be one of the “good guys.” Remembering to say thank you and smile will build a culture of appreciation that is really based on common sense: not taking people for granted, saying thank you and meaning it, making it clear you’re interested in them and their well-being. Trust me, there are plenty of sour, condescending, angry, and critical family members who spread their toxic venom—and that’s not how to win friends and influence the great many people who value the care they deliver; and
- In concert with the above, is the unwritten benefit of how much, you, the primary caregiver can contribute to promoting patient wellness. Because I am present with so many staffers in addition to my parents, I am in a unique position to observe and provide perceptions, insights, concerns and recommendations to assist with the decision-making process for acute and chronic care management. I am not advocating giving medical advice, but I have found that my involvement helps my parents understand their circumstances better, aids in better communication between the staff and my parents and helps to prioritize their particular needs, and most important, it creates a sense of bonding and trust between the staff and myself.
- Opportunity cost. The last, and certainly not least of the personal issues is what I call opportunity cost. In the world of business, when you are not working or addressing matters of importance because of other side-issues, then you are losing the opportunity to create the highest value on the most important things because you are distracted and diluted. This is, in my opinion, the single largest sacrifice you will make. You will spend less quality time per day and per week on your own issues, which will most definitely have a negative impact on your ability to attend to the needs of you personally, your family, your friends, and a peaceful state of mind. I see it every day, where something suffers as a result of my caregiving obligations. In my case, I was diagnosed this past year with RA, Rheumatoid Arthritis, a debilitating disease of the joints and in my 30’s with Systemic Lupus Erythematosus, which is an autoimmune disease that makes me highly susceptible to routine viruses and infections that eventually can wear down my internal organs.
Yes, I get up in the morning and dust myself off and prepare for the day living through chronic pain. And that’s great, but, as the primary caregiver, you know what, I find that I don’t even have time for myself. Taking care of the routine health matters most important to me end up taking a back seat. Fortunately, my BoomerGuy looks out for me and helps me stay on track with medications and critical appointments. Otherwise…well, the alternative is not a good one. I do hope you have a BoomerGuy, a BoomerGal, a BoomerSomeone, a son or daughter that you can rely on.
I’m not here to tell you it’s going to be an easy road as the primary caregiver. There are millions of us Boomers facing this issue and there are no simple rules, no defined expectations, and no road map on how to handle the journey. But you’re not on your own. You have Boomergal.com where I will be sharing my stories and learned experiences along with my e-Book coming out in late April which will be a condensed version of how to navigate the caregiving road map.
Another very important resource is our friends at AARP. Their thoughtful and relevant articles written by outstanding professionals on tracking your way through this journey are most helpful.
For now, here is one imperative I will leave you with. You must get a hold on your life and make time for yourself and your family. The last thing you want to do is to allow your life to be taken over, lose your strength and energy, and fall down the same slippery slope as our parents where you will need looking after. It’s too bad there isn’t a major support group for us caregivers. But sad to say, even if there was, we probably wouldn’t have the time to attend. Don’t put off that special day, trip or get together due to your parent’s needs. They wouldn’t want you to do that, and I don’t either.
To all my BoomerGals and BoomerGuys out there, you may feel vulnerable, but I’m here to help you along the way.
“If there is one thing I’ve learned in my years on this planet, it’s that the happiest and most fulfilled people are those who devoted themselves to something bigger and more profound than merely their own self-interest”
John Glenn
Try to be a rainbow in someone’s cloud and a bright spot in their day
If you are reading this, you are beautiful and worth it
Editorial contribution by www.thecaregiverscorner.com
and www.thinkadvisor.com, ALM Media Properties, LLC