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:
- “Alzheimer’s Disease: A New Way of Understanding for the Home Care Worker” by Jane Marks
- “The Universal Language of Caregiving: What We Need to Know Now” by Kim Linder