I’d been a bedside volunteer for more than five years; sitting with dying patients and their families once or twice a week for up to four continuous hours. Sometimes I stayed with patients overnight. Regardless how demanding my responsibilities, I knew that when I left the bedside, I’d have three to six days to “recover.”
It was a time to prepare myself for next week’s activities that could range from cooking a meal, to witnessing a friend’s active dying. My downtime—something that allowed me to recharge my batteries—is a luxury many caregivers don’t have.
I thought I understood what they went through, until my wife suffered a stroke from a heart arrhythmia. Overnight, my daughter and I became 24/7 caregivers for her physical and emotional needs. Fortunately, she recovered with no lasting disabilities. But the three-month experience left me with a new and deeper understanding of what long-term caregivers go through.
Addressing the physical needs of someone with a chronic or terminal illness is difficult enough. Adding in the emotional needs of both that person and yourself is like being tossed into a riptide.
I’ve been in patient’s homes where the physical caregiving was provided by health care workers; allowing the family to focus on the patient’s emotional needs. I’ve also been in homes where physical and emotional care were provided by the same person. Unless you have provided constant care for someone 24/7, it’s difficult to understand the struggle caregivers experience between satisfying their loved one’s needs and their own.
For example, after three weeks of redefining my life in terms of my wife’s needs, I stopped activities that had given me pleasure. Although I knew it was necessary to subvert my needs to hers, I couldn’t help feeling some resentment—a totally irrational emotion I was ashamed of having, since I did (and still do) love her, and knew my needs were trivial compared with hers.
Similar guilty feelings are expressed by long-term caregivers. Although these feelings are present, caregivers rarely feel comfortable talking about them. Why? Because the mantle of “Mother Teresa” is often imposed on them by others or themselves. Expectations, regardless of the source, can become strait jackets from which even Houdini wouldn’t be able to escape.
A patient once said to me, “Dying is hard work.” I agree. Possibly being the primary caregiver for a loved one is right up there in difficulty with dying. Caregivers experience flip sides of emotions; love—hate, acceptance—criticism, and gratitude—rejection, just to name a few that might occur in a single day. Some caregivers would say within a single hour.
Try to imagine what you might feel after giving up your life to care for an aging parent, who screamed at you that you weren’t doing enough for her because a meal was ten minutes late. And you knew her ingratitude would continue until her Alzheimer’s eliminated this hurtful behavior.
Having contradictory emotions is neither right nor wrong. They germinate from situations that are so expansive, those of us experiencing them are forced to sit still and just observe.
With increases in lifespan, people are living longer with chronic and terminal illnesses. That aunt who 10 years ago would have died from an incurable disease, is alive today and in need of constant care—maybe for the next five years. Will you be ready when it’s your turn to become a caregiver for a loved one?
Yes. I did not want to have any regrets when Mom passed, and I don’t think I do. I gave her my best, just as she had given her best to her family all of her life. I won’t say there weren’t difficult moments. There were. I could find myself in the middle of a firefight and not know how we even got there. Alzheimer’s can take over at an instant’s notice. But I recognized that it was the Alzheimer’s and not my mother who loved all of us very much. The ugly moments were NOT my mom. And I learned to be patient and went with the flow. I stayed with her for four months. I felt a great sense of responsibility when she was placed in a nursing facility. And torn between Mom and other family obligations. But I knew she would say, “Nobody can ask for more than your best.” And I did that. No regrets. Just miss her terribly.
You recognized what many never do-that the illness, whether it’s Alzheimer’s or others becomes a filter through which a person interacts with the world.
Yes, Stan, you are very right. We are not always a saintly caregiver. There is a Caregiver Bill of Rights floating around on the internet, and one of the rights is the right to have our own emotions. Guess what, no one gave us those “rights.” They do not exist except as wishful thinking.
the literature for caring for Alzheimer’s patients with behavior issues says to always approach them with a smile, to never criticize, yadda yadda. I have yet to find the guidebook for really dealing with a behavior issue, how to really get in there deal with the person. I have hit upon a few techniques myself, but have no idea if it just clicked with my mother, or it is something to pass along to others.
I have been sole caregiver for mother with Alzheimer’s for nine months now. OOpss. My bad. Nine full years. I found that on one hand we are expected to be a saint by others (who say they could not possibly do it themselves), and by others are criticized with such arguments as “you can’t do THAT! You have to have your own life!” I don’t notice such beings volunteering.
Now for about a year, I’ve had caregiver for 6 hours day, though I a here for much of it, as mom cannot be left alone. The rest of the 18 hours I am by her side, cannot leave it, cept for brief scoot to the kitchen or bathroom. We both sleep and live in the living room, my computers are here too, with mirror overhead to keep eye on Mom.
Look forward to your book. See videos of my Mom on http://www.youtube.com/CarolJWright
Thanks for your kind words. You’re very right that when most people write about long-term caring, they focus on those who need caring, and tend to gloss over the enormous changes that occur in the life of the caregiver. As I read some of these books, I wonder if these authors were ever involved in long-term caregiving, or there understanding comes from a theoreical perspective of “should be.” There is a balance that needs to be met, not one where the needs of one person trump the other, but rather the use of strategies and changes in caregiving where it’s a win-win situation. I hope my book will contribute to that. By the way, great videos!
I once could not invision myself as a caretaker. When I was young it was all about me and caring for a parent or close relative in old age wasn’t in my dna. Both of my parents died suddenly in the late 60s. Cancer and stroke took them quickly so in my selfishness my fears were relieved about long term care. God didn’t let me off that easily however. My sister, who is 4 yrs older that I became the needy one. Now in my 70s I am the caretaker for my older sister, who has vascular dimentia. This has been going on 5 yrs now. All of the emotions you posted are real and I experience those emotions on a regular basis. What I once said I would/could not do I am doing. It’s as if it was God’s plan all along to have me step up and hold me to a greater cause. My selfishness still gets in the way but something bigger than I reminds me of that which is more important. He lays out his purpose for us in ways we never imagined!
Your experiences are not unique, but still poignant. I’ve heard the same stories from people who thought they could never become a caregiver. Yet, by following their heart they were able to succeed. I bit of knowledge was also helpful. That’s why I decided to write Learning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers. I will be published by New World Library in March of 2012. Thanks for sharing your experiences.
what a wonderful testament of love, strength and commitment. Thank you for sharing your self so many others can gain Knowles, learn to ask for help and educate others that love is forever, life is transient.
Thanks for your kind words Mariam,
My siblings and I were lucky to have professional caregivers who helped us fill in the gaps when my mother was in the last stages of ovarian cancer. I lived on the East Coast at the time and flew to California about once a month for a week or so. One very special caregiver told me that the greatest gift she had was the opportunity to spend time caring for her own dying mother. She said that she loved to wash her mother’s hair and massage her to relieve some of the pain. Then she said to me, “Every mother is my mother.” I’ve never forgotten those words and how they helped me to feel that my own mom was in the hands of a person who saw her as her own — as I would. The caregiver had a big heart and it was like she was holding me in it, too.
If only your experience could be replicated universally! I think there are two variables that can effect how caregivers react. The first is the amount of time necessary to care for the needs of a loved one. And the second is the type of illness.
I’ve found that when someone is responsible for 24/7 care with few breaks, there is a natural wearing down, regardless of how compassionate they would like to be or how loving the relationship has been. Unfortunately, many caregivers look at this very normal reaction as something they feel guilty about-the Mother Teresa effect.
It’s been my experience that illnesses that effect the loved one’s cognition and/or personality have the greatest negative effect on caregivers. It’s difficult for someone who has sacrificed their life for the care of a loved one to be the recipient of abuse, even though they know it’s the illness that’s talking. Thanks for your comments.
I worked for hospice and trained volunteers, but nothing prepared me for being the primary caregiver for my dad. I thought I understood Alzheimer’s too, but honestly I didn’t have a clue. It offered up a whole new kind of grieving as well. It’s only now, 8 years later and looking back, that I understand how different it was. More recovery from exhaustion than anything else.
What you now know is something most people don’t realize until it’s their turn to become a caregivers. That’s the impetus for writing my next book on caregiving. I have no delusions that it will completely prepare people, but at least it may reduce the shock of what they have willingly or reluctantly decided to do.
Stan, your sharing is so poignant. I was the oversight caregiver for my dad for six years. Even though I was blessed to have a professional caregiver for the 24/7 care he needed, I worked full time and was there three days a week, took all the calls from the caregiver when anything else was needed: medication renewals, house repairs, diaper orders, you name it. I was the only sibling out of four in the area that responded to every night time ER visit and eventually arranged for hospice and sat for six days at his bedside vigil. So even when families have help, primary family caregivers must put their own lives on hold, leaving their spouses and families to fend for themselves most of the time, while we hang on to our jobs and coordinate things from a distance while incorporating regular visits to the person who is sick or dying. It’s a blessing, a calling, and the ultimate sacrifice in repaying a debt to our loved ones for the love they shared from many years back.
What you experienced is something that many people who haven’t done 24/7 can’t understand. I think they see the “Mother Teresa” in caregivers and expect it. But when glimpses of Donald Trump come out, they can’t understand what was behind it. And as wonderful as hospice volunteers and staff are, I think in many ways they may also lack an understanding of what constant care does to one’s mind and soul. There are wonderful things we experience serving a loved one. But, sometimes…… I know I didn’t understand the full 360 degree view it until I had to do it.
Caring for a loved one at such a time is a gift to one’s self. It may not be apparent at the moment. But you also show honestly the very difficult side of the experience. Thanks for this wonderful reflection.
Hi Mary Jo,
Thank you for your kind words.
I am a Hospice Volunteer caregiver at an “end of life” Hospice care center. All of us at times hear the words from families, friends and patients: How can you stand to do what you do? “See patients’ dying every day. It must have an impact on your life.” My response to them is simply “The joy that I received from each and every family and patient rewards me so much more than I can ever give”. It is a pleasure and an honor to be an “end of life” volunteer caregiver.
HPH Care Center
Your feelings and the conversations you’ve had with families mirror my own for the last 8 years. It never gets old, does it?
Great piece. Just wanted to let you know that as I have been the 24/7 caregiver for Barry during two transplants while housebound — doing every little bit of everything as he wasn’t allowed or able to do it — I never felt one bit of resentment towards him. Toward the situation, I felt tons of resentment. Maybe I’m just lucky.
Thanks for your kind words. What you experienced had nothing to do with luck. From our friendship what I’ve seen is an incredibly compassionate caregiver and a loved one who always appreciated everything you did. Not luck, hard work.
The headline “Caregivers: “We’re Not Mother Teresa” caught my attention immediately which is difficult in twitterville.
Since 2002, I was taking care of my mom who had dementia. I left my photographic career and my life to take care of her. At first, I worked during the day while I hired a caregiver to be her companion during the day. At night, she would sleep an hour then wake up, watch television and go in the kitchen to clean. My life became a “Ground Hog Day” repeating itself over and over.
Neighbors,friends,family and even strangers would praise me “What a good son you are for taking care of your mother” but inside of me was anger and frustration. What saved me was the local support groups, my daily workouts, “yelling at the top of my lungs in the middle of the night waking up the neighbors” and eventually a blogger.
Mom became difficult for the caregivers and I hired caregivers more experienced dealing with dementia. As the months pass and then years it became financially hard to maintain my caregiver staff. I was determined to keep her living in her home although I did consider all the other options. I finally worked 24/7 taking care of mom and discovered yoga and meditation to find peace inside of me.
Do I have any regrets? Absolutely but I discovered that there are no right or wrong decisions just experiences that we journey through. On January 29th, mom died one day before her 90th birthday. She died in her home while I held her hands.
Today, I am a Caregiver Advocate and learning how to live again. I am active on twitter, acting as a 60’s style radio DJ taking request and dedication mostly from CNA, family caregivers, senior citizens nationwide. Why? During the night in order to calm mom down I played Sinatra, Nat King Cole and Rosemarie Clooney music and she would sit down, remember, smile and finally fall asleep.
Your account of what you experienced was not only moving, but also something I’ve been hearing for eight years. Unfortunately, many people who haven’t been caregivers view everything in “black” and “white” terms. The caregiver is Mother Teresa or someone with the compassion of a Donald Trump. As you know, we’re neither. It’s a misconception I’ve seen even with paid staff who have been involved in long-term caregiving.
Your commentary should be shared with others. In Fall 2012 my new book on caregiving will be published by New World Library. I’d like to include your comments with all necessary protection of your privacy. Feel free to contact me through my email firstname.lastname@example.org
This hit home in so many ways. You said it perfectly and thank you!
The people I help at the end of life often ask me how I can do this. I tell them that I look at them as a person, not a dying person. Yet, when it was my mother, and I tried the same approach, she became resentful. She told me that I didn’t understand what she was going through, knowing that this is the end. I have tried to understand this and keep it in my mind. Now, I spend more time listening and less giving any comments, besides ‘tell me more.’
After, I find that the family has more to help them, than when we were expressing how much we did for our loved one.
Your words are incredibly wise. I’ve always found it be difficult to be simultaneously a loved one and a caretaker (or therapist). But, as you know, we often don’t have a choice. Songyal Rinpoche had it right on the money when he advised someone on what to do this dying patients, “Listen more, talk less.”
So very glad to hear everything turned out okay for your wife but I am sure it was a scary stressful time. I work in hospice and sometimes the caregiver will say;” Boy when I try to do that I can’t do anything right. Or he/she is being so nice to you. They were really crabby before you came.” This can be hard for the family member who has been doing everything they possibly can to be helpful.
I’ve had that same experience often. But then those of us in hospice don’t bring into the situation any historical baggage. Patients often view us as Mother Teresa because they believe what we are doing is selfless. It’s difficult for them to believe that they are giving me more than I think I’m giving them. But then again, nobody wants to be crabby with Mother Teresa.
Just yesterday, after speaking at a dinner for Hospice Volunteers, a woman approached me to say “thank you” for something I said several years ago at a conference. She said she received validation that her feelings of resentment and anger regarding the needs of her ailing mother were “ok.”
Although she loved her mother deeply, she was fatigued and fearful. She lived in guilt over her contrasting emotions. When I explained the stages of the caregiver’s grief – Disbelief, Despair, then Acceptance, Farewell (even recovery is a Farewell to the illness) and lastly, Triumph, she felt she was given the “right” to her feelings.
Many times, compassion and understanding for the caregiver is non-existent. It is such a beautiful and meaningful gift to ourselves when we, as caregivers, are able to identify our needs, disappointments and fears, and be compassionate to ourselves during times of difficulty.
Thank you, Stan, for sharing your heart.
Joyce Marie Sheldon
author of From Fear to Faith,
a Caregiver’s Journey
Thank you for your kind words. You’re absolutely right about the difficulty many people have with displaying compassion to caregivers. I think in some ways it may have to do with buying into what people think caregivers “should” be feeling, rather than understanding the realities of what is involved with sacrificing. And also the guilt that caregivers may experience when they don’t feel they have permission to express their needs.
I’m a member of a hospice singers group. We sing for the people you sit with. I had some trepidation about joining the group, and I read your book to prepare for it, and I found it very helpful, thank you.
I confess I have found myself thinking “I don’t ever want to be in that situation” when I’ve sung for some people. I hope that’s not offensive. But it has got me thinking, frankly, about doing myself in before I get to that point. This is a sensitive topic for sure, but I wonder where you stand on that issue.
I’m glad my book helped and there’s no need to apologize for asking a question many have thought about–including me. If there was anything my experience as a bedside hospice volunteer gave me was an understanding that if I want to have an easier death, I need to do things now to make that happen. Basically, taking lessons from my patients on the importance of forgiving, ask for forgiveness, letting go of what no longer works, to give unconditionally, to love, and speak from my heart. Preparing for death can either be something that can make one think about doing themselves in, or it can be an incredibly spiritual event. You’re in charge. I hope this helps.
Bravo, Stan! I want to be like you when I grow up! Damiano
Thanks for sharing so much of yourself and your family with myself and others.
You’re very welcome. I hope my experiences help.
Hi Stan, Thanks for this wise and very helpful essay. I am really sorry to hear of your wife’s stroke and the care it necessitated. I’m also happy that she apparently has no lasting disabilities. This sounds like a major crisis for you all. Your piece helps me to accept myself a bit better when I feel impatient with my mother, and I’m not even her caretaker … just a daughter who loves her and visits.
Thanks for your kind words Barbara. I’ve come to believe that I only grow during times of stress. As difficult as the experience was for my wife, daughter, and I, I believe we all became better people because of it. However, it would have been nice to learn the lesson from a grouchy uncle.
Your words are thoughtful and full of the substance of knowing a process we all have to face — with our loved ones and ultimately with ourselves. The gap between intellectual understanding and acceptance and reality is for most of us elusive until life forces the chasm to close. We think we’re ready and then… we’re not so ‘smug’.
Our cultural consciousness is so steeped in the pain of death and separation. I long to step into another level of knowing but alas, I think it will be just be a better understanding of the process, not one of ‘really knowing’.
Thanks for your kind words. I’ve found there are 3 levels of understanding: 1) What people read in books and listen to in lectures (texts on what caregiving should be); 2) Observing what they are trying to understand (watching the families of my patients caring for them, and 3) actively participation (caring for my wife for 3 months). As I move farther away from the university I realize that there probably is only one level of understanding that can become knowledge. Everything else, well…….