by Jane Marks, Certified Dementia Practitioner, Speaker, Trainer
Do you recall the children’s movie that was a big hit a couple of years ago that had the theme song with the line, “Let it go, let it go.”? Yes, the one EVERYONE was singing and that you could not get out of your head for the rest of the day after hearing it. It is now, most likely, running through you mind at this brief suggestion. Good. Hold that thought.
You see, I have been thinking about guilt. I often feel guilty. It is one of my greatest talents. I have often commented that if only someone would pay me for feeling guilty and for needless worrying, I would be a bazillionaire. As a caregiver, these two – guilt and worry – seem to be boundless and unending. It was for me as I traveled my journey as a caregiver, and it seems so for most of the caregivers with whom I interact.
In the past few months, I have read two articles on caregiving that did not give me the insight or help that I had hoped, but did give me confirmation on how challenging these two emotions can be for caregivers. In one, the author called caregiving “a crucible”. That word does not have a positive connotation for me, but I decided to look up the definition to be certain. I equate the word with the play written by Arthur Miller (once married to Marilyn Monroe, for you trivia fans out there) about the Salem witch trials. A more general definition that I found is, “a place or occasion of severe test or trial.” That certainly describes caregiving as I know it. The second article listed the top ten emotions to be mindful of if you are a caregiver. What was the number one emotion on that list? You guessed it, our friend guilt.
As I pondered the crucible comparison, it occurred to me that the emotional burden of caregiving might be the greatest burden we carry as caregivers. It may very well be our number one nemesis. Yes, caregiving can be a test or trial that is physically exhausting and financially burdensome, but the emotional burden is the one that seems nearly impossible to manage. One may find ways to get some physical rest – a family member or a neighbor might give you a time of respite. Maybe you can afford to hire some help. If funds are scarce, it may be possible to sell property or valuables. Some families may choose to take advantage of a reverse mortgage to deal with the financial burden. I am not implying these challenges are easy. In fact, these very actions themselves may induce guilt. Different families have different solutions for those physical and financial challenges but guilt seems to be a universal commonality. In my nearly 20 years of working with caregivers and learning from them, there does not seem to be a concrete method, a specific formula, to ease that particular burden.
Guilt is also an emotion that – even when our caregiving task is over – hangs on with a vengeance. Several months ago, I listened to a United States Senator speak about her caregiving journey with both her parents. Both had dementia and both had passed away within the last year. She described how her family dealt with the early recognition that something was wrong, then how, later, they made the decision that her parents could no longer remain in their home. She shared details of their last days. In a broken voice she said, “I still worry that I did not do enough – that I could have, or should have done something more.”
Guilt may also be the reason some caregivers have difficulty setting boundaries. Terry is a good example. I met Terry at a caregiving event. As she began to tell me her story, her face, her tone of voice, as well as her body language indicated how frustrated and tired she was. I tried to listen objectively. It sounded as though Terry’s mother was quite demanding and manipulative. Her medical issues were not life threatening, she had financial means, and lived in a well-respected assisted living facility. Yet Terry was spending many hours running errands and trying to appease her Mother’s constant demands and complaints. In her caregiving quest to do her best, Terry did not seem to recognize that her mother was being unreasonable. She finally said, “My husband is furious. He says I care more about my mom than I do about our marriage. I am really afraid he is going to leave me.”
I advised Terry to set some boundaries. I suggested she weigh each demand and complaint as to how serious and immediate the need was, and then balance that with her own needs. She should not cancel dinner plans out with her husband in order to go pick up some ibuprofen for her mother as she stated she had done just a few days earlier. Those kinds of demands could wait until the next morning and in fact, I pointed out that the assisted living facility probably had some ibuprofen on hand. I suggested Terry set aside one day each week to do the errands for her mother and to be very clear with her mother about that schedule. I also suggested she urge her mother to ask the assisted living staff for more assistance (like when she needed ibuprofen). These suggestions may sound obvious, but Terry was unable to see on her own that those kinds of boundaries would be helpful. Her guilt was blocking her from thinking clearly.
Recently, I presented at a caregiver conference in another state. After my presentation, among the many that came up to ask questions or to comment was Shirley. She shared that she was caring for her 94 year old father. She told me a bit about their situation and asked for some advice about a particular challenge with her father. I offered some suggestions but as I looked into her eyes I was compelled to ask, “And are you taking care of yourself Shirley?”
Her eyes filled with tears and she responded, “Not really. In fact, I feel guilty for coming here today instead of being with my father.”
My heart ached for her. “Shirley, don’t you think you are doing the very best you can to care for your father?” I asked.
“Probably not,” she answered with a shake of her head and a tear on her cheek.
I reached out and embraced her as I said, “Shirley, you came here today. You arranged for someone you trust to stay with your father. You listened and took notes as experts offered advice on caregiving, pointers on how to provide better care, as well as information on local resources. That shows me you are trying your best and one simply cannot do better than one’s best! I hope you will remember that.” Shirley smiled and hugged me back.
I believe no family caregiver wakes up and says, “I am determined that today I am going to be the worst caregiver I can possibly be!” Yes, there are days when we fail miserably. Our temper, our exhaustion, our lack of knowledge, even our simple humanness will cause us to mess up sometimes. None of us will do it perfectly all the time, but each of us is doing the very best we can at any given moment.
In many caregiving situations, you are battling a condition or illness that is not curable. Yes, Dad may rehabilitate from that stroke but he may never recover completely. The autistic child may improve and develop life skills with work and proper therapy, but may never be completely independent. Those with Alzheimer’s, ALS, COPD, renal failure, or terminal cancer will only worsen overtime. Yet, I think, somewhere deep down, we think we can fix it. But we can’t turn back the clock, we cannot stop the aging process, nor can we cure illness. It is important for caregivers to realize we are only the umbrella. We cannot stop the rain. We are merely a person trying to provide comfort, care, and love to someone who is succumbing to an illness or a condition over which we have little or no control. What we can control is how we take care of ourselves.
I am sure I did not completely assuage Shirley’s guilt. I wish I had that magic powers to erase a tired caregiver’s guilt. I also pointed out to Shirley that if she wanted to be able to provide care for her father as long as he may need it, it was imperative that she take care of herself. She need not feel guilty about that. I do know, as a reader and a writer, that words have power. It is why we become so upset with some of the things we read on social media, most particularly those political posts! Seriously, we know how words can hurt and how words can make us feel better. When someone tells us, “Good job!” or “I truly appreciate you,” it sticks with us for a while and buoys our mood and spirit. We all recall those times when someone has said something hurtful or mean. It sticks in our craw and causes us to lose sleep. When the person with dementia for whom we care asks, “Who are you?” or says, “I hate you!”, we know the pain in our heart and soul those words can render.
I hope the words written here will help you. I hope you realize that someone does appreciate your role as a caregiver and understands the many emotions you feel. You are not alone on the emotional roller coaster of caregiving.
I want to share just a few more words, by someone wiser than I, that may help you. Maureen Johnson, a New York Times best-selling author, has said, “Guilt is a weight that will crush you, whether you deserve it or not.” This weight, this guilt, will not help you be a better caregiver. It will contribute to your exhaustion and your feelings of hopelessness. Other than that, guilt is useless. I will say it one more time – you do not deserve the heavy weight of guilt because you are doing the best you can. The mere fact that you are reading this post tells me you are seeking ways to be a better caregiver. You are giving of your time and your heart to try to ease life for someone else. You can’t do better than that.
A few weeks ago, I heard this quote from Buddha. I think it may be my current favorite. No matter your religious or philosophical beliefs, these are good words to live by, especially if you are a caregiver. “In the end there are only three things that matter: how much you loved; how gently you lived; and how gracefully you let go of things not meant for you.” So, this guilt thing, just let it go.
You can follow Jane’s blogs and articles on www.sandwichcaring.com and Sandwich Caring on Facebook.
Nurses can earn 3 hours of free CEs by going to HHQI University and completing the Meeting the Needs of Caregivers and Care Receivers course. This course includes watching two excellent webinars:
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June is the National Alzheimer’s and Brain Awareness Month. The 
There was still a huge burden on the family in coordinating Marie’s care, locating and enrolling her into the adult day care, determining how and when to use caregivers in the home, as well as managing her finances and medical conditions. In Fall 2012, the PDA Waiver was finalized and the family began using the adult daycare and caregiving agency for Marie on a more regular basis. Unfortunately, in early 2013 Marie had another serious illness and was frequently hospitalized. This led to another sharp decline in her mental status. When these types of declines occur, there is no return to a baseline. Nevertheless, Sara decided to return to work part-time that Fall. A year later, the medical problems exacerbated, and Sara was often called away from her job when her mother would become ill at daycare and be sent to the emergency department. As Marie’s dementia and health continued to decline, she was no longer a candidate for daycare, and the painful decision to place her in a nursing home was made. She is now very settled in the dementia care unit of a local skilled facility, and her family members visit frequently.
I asked Sara what she thought was the best part of caring for her mother. She said, “It has been my honor to care for my mother, and to pay her back for everything that I put her through when I was growing up. It has made me appreciate how caring for someone so disabled can actually bring one great joy and peace of mind and heart. I felt strongly that I was meant to care for her, and that I should not run from it, but embrace it. I do not regret it for one minute and feel so grateful she is still here. I am so thankful that we are able to have our moments of recognition and happiness together for what is left of her years on earth.”
As the busy summer months are approaching, keeping your health and well-being as a top priority is as important as ever. Between spending time outdoors, enjoying the warm weather, and grilling out with family and friends, the last thing anyone wants to worry about is health problems due to mismanaged medications. So here are a few tips and tricks to make managing your medications and health conditions easy with only a small time commitment. By following these simple suggestions, I hope you can keep your body in tip-top shape so you have time and energy to make many wonderful memories this summer!
by Misty Kevech, RN, MS, HHQI RN Project Coordinator
HHQI’s Underserved Population (UP) Network 
Patient Safety Awareness Week is coming up March 12-18 and I’m always excited during this time of the year. You see, patient safety seems so simple yet is so complex and I could literally spend hours talking about it. But what I’d really like to do is intrigue you into becoming as excited about patient safety and patient safety culture as I am. The analogy that comes to mind for me is that of an onion. When you peel away the layers of an onion, you are left with the heart of the onion, or rather the core. The same is true with patient safety. As you begin to peel away the actions of an organization and look underneath at the rationales for those actions, you find the underlying beliefs of an organization, the foundation, the culture regarding Patient Safety and that is where a journey of patient safety must begin.
So where do we begin this journey? Evaluate your organization’s culture, not just employee engagement, to actually look at how the employees within your organization feel about the organization’s commitment to safety. Look at your processes and what happens when a mistake is made. Is there an investigation or Root Cause Analysis of the event including not just the outcome of the mistake, but review of the system, including policies, and contributing factors? Is there a tendency to discipline or maybe terminate the employee responsible for the mistake with the reason being, if you eliminate the person responsible then the problem is solved? Do the employees in your organization feel comfortable admitting to near mistakes, mistakes that resulted in no harm, or pointing out unsafe conditions? If so, keep up the awesome job! If not, ask why? Is it because of the culture? Does everyone just keep their head down and try to sweep mistakes that didn’t result in harm under the rug? Surveys, such as the Survey on Patient Safety, can help leaders visualize where their organization is on the culture scale. It also allows for identifying a starting point for change.
But in focusing on patient safety, leaders shouldn’t lose sight of their most valuable asset – their employees. Employees need to feel supported and invested in by their leaders. This is where leaders and organizations should ensure they have a strong Employee Assistance Program, but maybe should also look into other supportive programs such as Second Victims. This program trains the staff on how to support a fellow employee who may have been involved in an adverse event. In home care and hospice, this is something that could help not just if an adverse event occurs, but also if a long-term patient expires. Even if it was expected in hospice and home care, relationships develop between the health care team and the patient; a Second Victims Program can help to provide the support needed to those involved in the care of a long-term patient who passes.
Gearing up for the big game? I have to admit, at the very moment I’m writing this I have absolutely no idea which teams are even playing in Sunday’s game. I know my brothers would be so proud! At any rate, Super Bowl Sunday has ALWAYS been a part of my life. There have been many years when the big game fell on my birthday, or often times my birthday party was held on the same day. What a great way to kill two birds with one stone, mom!
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As for the nachos, I’m not crazy about cheese these days (certainly not the fake cheese spreads, dips, slices, and whizzes out there) and neither is my belly. Some of these cheeses lack nutrients and include questionable ingredients that can make their way into ‘processed cheese products’. This year, I’ll be serving up a rendition on this 
