Family caregivers need to be kind to themselves
It's been awhile since I've posted here. I have been very busy. Do you ever feel like your to-do list never ends? Do you get sidetracked by life? Well then, I'm not alone!
I have been spending an enormous amount of time on my Visiting Angels agency, improving processes, doing assessments and visiting homes. My responsibilities to our clients, families and staff takes priority over pretty much anything else but a family emergency and my health.
Family events and responsibilities have taken a lot of time as well. I just witnessed the birth of my third grandchild one week ago today, after a grueling 24 hours in the hospital. I am very happy to report my precious grandson and his mom are doing well. Somehow I think 24 hours in the hospital waiting for the baby's arrival was more difficult on the grandparents than a mother in labor with a spinal! My daughter-in-law would probably disagree.
If you've read my articles here or my blog you know I am chronically sick. For those who don't, I have Sjogren's Syndrome and Chronic Fatigue Immune Deficiency Syndrome. I own and direct Visiting Angels private duty home care agency in Ann Arbor and write for five websites. I have a home, husband and family, and like to enjoy time off with family and friends, outdoors in the summer, and Sunday mornings at church.
Sometimes I think this would be an enormous amount on a healthy person's plate, let alone a chronically sick person. My health dictates what I can do every hour of every day. It can be very difficult to attend to my responsibilities when my body won't cooperate. So sometimes things just have to be put on the back burner while I attend to the priorities, or my body forces me to stay in bed.
I mention this not because of me in particular, but as a reference point to my thoughts. Whether I am in the midst of work or not, I spend a lot of time thinking about family caregivers. Families I know, and families I don't. I provide intermittent assistance to my aging parents, one locally and one out of state. When their circumstances require assistance I am there as much as I possibly can be. I am fortunate that my assistant director, Cindy, is amazing and can handle anything that comes up in the agency, and my schedule is usually flexible. My husband is supportive, and understands family caregiving after caring for both of his parents until their passing. Even with understanding, and supportive people around me, family caregiving is tough. A recent trip to help my mom through surgery took me a week in bed to recover.
So far my parents have been able to maintain a pretty independent life for the most part, but I, like many families, wonder how we will function as a family when care needs become greater?
Too much on caregiver's plate There are approximately 45-50 million family caregivers in the U.S. Many are thrust into caregiving without warning, making it much more difficult to handle. I think about the family caregivers who were extremely busy with work and family before they were thrust into caregiving, and wonder how they do it? We typically get called at Visiting Angels when family caregivers are exhausted, burned out, or at the end of their rope, and they or someone close to them realizes they need help, or pushes them to get help.
As much as I have on my plate, I know that family caregivers that provide assistance to their loved one on a daily basis have much more on theirs! I recently met with an adult daughter, who is caring for two aging and unhealthy parents. She is also running the family business and has three small children, a husband and household. Her husband is supportive, be he also must work.
She was getting some assistance before we met, but not nearly enough with all the responsibility she has. The assistance she had was only while she was at work, and she returned to caregiving for her parents following her work day. She loves her parents and wants them to remain in their home, as they prefer. She must attend to the family business to maintain an income for her and her family, and she loves and wants to raise her children well. There is no way to eliminate any of the responsibilities she has. You can't give the kids back, you can't quit working and hope for a miraculous income, and you can't just give up on or desert your parents.
When I met with this family our primary focus was to relieve the daughter and make her understand that she MUST put herself on the to-do list. This is VERY difficult for family caregivers, especially women. It's important for caregivers to understand that the only way they can help anyone is to care for themselves. Many feel an enormous amount of guilt when they finally give in and ask for outside help. They feel that somehow they have failed, by not doing it all. I know that feeling very well. Chronic illness also prevents me and others from doing it all. I spent years feeling guilty about not being able to attend to my responsibilities. Occasionally those feelings still rear their ugly head, and I have to remind myself that I must take care of me. I can't do it all, all of the time. I don't choose not to fulfill obligations or say no to additional responsibilities, I have no choice. My body decides.
Family caregivers often have the same situation. Some responsibilities get neglected because the priority needs to be somewhere else. Family caregivers need to really think about what is reasonable to expect of themselves. They typically need to get and accept help long before they do. They need to let go of negative feelings, like guilt, that do nothing more than weigh on their already burdened shoulders. They need to make a huge effort to make time for themselves, to enjoy life, to rest and to have fun.
Recognizing it's too much I spend a lot of time supporting family caregivers and have had the self-care discussion with countless family members. Often they break down in tears when I tell them no one can do it all, and let go of the guilt. We recognize they are doing the best they can, and they have the best intentions for their loved one. I can't say for sure, but from the conversation and emotions, I gather that they have not been understood or been able to voice their feelings.
These selfless individuals don't want to complain, or show the emotional toll caregiving is taking on them. Giving them an outside point of view about how much they give, and what is reasonable, seems to give them emotional relief. Knowing that someone recognizes the sacrifice and how difficult caregiving is helps take away the loneliness they too often feel.
Have you ever been in a situation or dealing with emotions like no one in the world understands? This is very typical for family caregivers. They keep their feelings to themselves because they're ashamed of feeling bad as they care for a loved one. There is nothing shameful about recognizing it's too much.
Continuous caregiving will at some point become too much. There are a lot of factors that play into whether that time comes sooner or later, but it will come. It always comes when someone is overloaded and bearing it all. It is so much better to recognize early on that help is needed, and self care is mandatory. The longer someone puts off asking for or accepting help, the more likely there will be illness, depression, and damage to the family relationship.
Accepting outside help I suggest scheduling time on the calendar just like a doctor appointment is scheduled, and with as much importance. I can't tell you how significantly family caregivers reduce their stress when they finally accept outside help. I recommend a minimum of 4-6 hours a week, to just check out of all of the responsibilities and rest. Optimal would be off 2 days a week from the caregiving role, depending on the situation.
Rest is different for everyone. Whatever rejuvenates you and gives you the ability to drop the stress and start over is what you should do. Whether you sleep, sit quietly with no distractions to pray, get a massage, have a date with your spouse, or lunch with a friend, go to a movie, get a pedicure or just allow yourself time to be a family member rather than a caregiver, you will be glad you did. By the way, the massage school in Ann Arbor offers very reasonable massages if finances are a concern!
This might be a cliche but I am going to use it anyway. Imagine a pitcher full of water. Imagine each responsibility as an empty glass. As you fill your roles caregiving, working, and other family and life responsibilities, the water is being poured out of the pitcher, and the glasses are becoming full. If you are not resting, having any enjoyment or fun, there is no more water to fill the pitcher. Before you know it the pitcher is empty and you are extremely thirsty because you saved no water for yourself. You are now out of water for yourself and have nothing to put into the glasses that are also becoming empty.
This is exactly what happens to family caregivers who don't take time for themselves. You are depleting your life without adding to it. You must care for yourself to care for others.
My life before and after chronic illness is very different. I have always taken care of everyone but me. I am a woman, mother, wife, grandmother, daughter, sister, nurse, friend, writer, educator, business owner and senior advocate. I was never on my to-do list. It has been very difficult for me to learn to give myself permission to take care of me.
I still struggle with this change, and more often than not find myself reactively resting, when I have overdone it, rather than proactively resting so I don't end up in bed from too much activity and work. This is so similar to life before caregiving and life after caregiving. The emotions can be the same, the life change can be the same, and the struggle for self-care can be the same. So I don't claim that learning to take care of yourself and making it a priority is easy. It takes concerted effort. It has been baby steps for me, and it may be for you.
If you have to start with 15 minutes a day to just relax and take time for yourself, it's a beginning. Schedule it, and outside of someone dying or the house catches on fire, do not compromise the time, or you will never get it, or get used to caring for yourself. You will be empty.
I have yet to meet a family caregiver who is providing consistent care that is selfish. Family caregivers give so much more than they realize. Family caregivers give a portion; if not all of their life, to the person they love and care for. This is the most unselfish thing anyone can do.
So if you read this as a family caregiver, be kind to yourself. Think very hard about putting yourself on the priority list, and then do it. Without self care you are prone to depression and illness, and won't be able to help anyone. Accept help from people who offer, or get outside help. Ask family members to pitch in on a regular basis. Don't succumb to guilt that you have allowed yourself to drum up, or by anyone who tries to make you feel guilty, and that includes the person you're caring for.
No one can do it all, and that is OK. Be OK with saying no to additional commitments. If the person you are caring for is demanding and unreasonable put your foot down. Caregiving is hard enough without unreasonable demands. Allowing and attending to unreasonable demands will just foster resentment and damage the relationship. It will cause burnout quicker and an enormous amount of unnecessary stress.
If you are reading this as someone who knows a family caregiver, you cannot truly understand how difficult it is, unless you've done it. Compliment the caregiver on how great they are to provide care to a loved one. Listen to what they say, and be supportive and understanding. Bring a meal on a regular and consistent basis, or regularly fill in as a caregiver so the primary caregiver can have some respite time. Make a visit with coffee cake or some fruit and give time for a chat break. Many families lose touch with the outside world when intensive ongoing care is needed. Because they don't have the time or ability to pursue nurturing relationships, the calls and visits become less frequent as time goes on. I can tell you that if you offer help or a visit, they will most likely decline.
Don't ask if they need your help, just give your help. None of us make it through life alone. Family caregivers are often isolated as they fulfill daily responsibilities. Whether they say it or not, they need you. They need support, affirmation, understanding and help.
There are lots of resources in the Ann Arbor area. If you have questions or need resources call us at Visiting Angels 734-929-9201. We are happy to help you with education, information and referrals.
To contact Angil Tarach-Ritchey with comments or questions e-mail firstname.lastname@example.org