"They won't help!"
I sat and listened to the daughter of a 78 year old woman patient. "Mom was walking around on her own, even going out into the yard with her walker, before the hospitalization. Now I have to supervise her because she falls when she tries to get up. She only eats if I'm at the table and reminding her to take another bite. My brothers don't understand how much more care she needs. They visit for an hour. She sits on the couch the whole time and she looks the same as before, and then they're gone! I told them to see for themselves and to take her for a weekend! They keep saying they're too busy and they can't. They won't help!"
Being a caregiver can be a lonely job. If a loved one requires constant supervision, the caregiver is essentially living in a prolonged state of isolation. When I meet with patients as their palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I may be one of the caregiver's few contacts outside their home (or when I make a home visit, one of the few visitors to their home). I hear a lot of venting.
Many times a family member or caregiver simply wants to be heard. They deserve validation for their efforts in relentless care and attention. Sometimes I also sense that a request for help is being asked. This is when I lean heavily on the palliative care social worker to provide community resources and assist with obtaining the services of a provider, also known as a home care aide.
In the meantime, at that very moment, I wonder how I should respond. What suggestions can I offer?
I have not received training on how to respond to these stories of caregiver burden other than "I can refer you to our social worker." The following suggestions are a culmination of my observations of social worker colleagues' responses, patient feedback and stories, personal life experiences, literature searches, and Google search results.
1. Be specific with requests and instructions.
I once heard a young mother complaining about her husband to her friend, "He doesn't want to be alone with the baby. He gets overwhelmed or frustrated, and nothing gets done the way it should get done. I really don't have help."
As with all new tasks in life, a person needs to receive some explanations (and sometimes demonstrations) in order to approach the task with some confidence that they will competently complete the task. When it comes to caring for another human being, a person may need even more support and encouragement because the stakes are higher.
When a mother asks, "Can you watch the baby tomorrow?" the automatic response might be hesitancy. "I'm not sure what to do. I don't want to hurt him" or "I don't think I can. Something bad might happen."
It might be less emotionally overwhelming and therefore a person may be much more willing to assist if they were given specific instructions for a specific request. "Can you watch the baby from 1 to 4 tomorrow afternoon? I will show you how I change his diaper and where I keep his clothes. You would probably have to feed him a 4 ounce bottle around 1 o'clock. I will show you how to burp him after feeding and where to put him if he falls asleep. I would really appreciate your help. I just need this time to recharge and get some errands done."
Help can be anything that eases the sense of burden or injects a spark of joy.
Help can be social support, ranging from picking up mail at the mailbox every other day and reading through them for someone whose vision is poor to cleaning the windows every spring to obtaining groceries every week for someone who no longer has the stamina or ability to leave the house.
"Mom really misses getting her nails done. Can you come over for an hour every other Sunday to hang out and do her nails?"
"Can you drive Dad to the cardiologist appointment on Tuesday morning and take him out for lunch at the Village Inn? He's been talking about going there all week, but I didn't get the chance to take him and I have a radiology appointment that day."
"It would be really nice if you could come over this weekend and mow the lawn."
Help can be physical support, ranging from supervising and assisting someone who has difficulty rising from a chair or couch to assisting someone with their bathing, soaping up, shampooing, rinsing, drying off, and getting dressed.
"I have my annual weekend with the girls coming up, but I feel uncomfortable leaving Dad alone this year. Could you stay with him next weekend, from Saturday 6am to Monday 5pm? He mainly needs help whenever he wants to get up. Thankfully, he doesn't try to get up at night. I can show you how you can help him get to the toilet and get dressed. And you would just have to microwave his meals."
Help can be financial support.
"The three of us need to meet up next weekend and go over Mom and Dad's finances and decide who is going to pay their rent, who is going to pay their utility bills, who is going to pay for their medications and medical bills, and who is going to pay for their groceries. Hopefully, their checks cover all that."
"Okay, the refrigerator is definitely broken. It'll cost maybe $700 to get a new one. Can you cover half?"
Help can be emotional support, whether it be a best friend the caregiver speaks with on the phone everyday or members from church who visit every week.
"I like to FaceTime with my children. That really helps. Maybe I will ask them if I could FaceTime with each of them every fourth day. Then I'll be able to rotate through the kids and talk to at least one of them every day. That would be really nice."
"I asked my neighbor if he wanted to come over one day - he's taking care of his brother - and now we both smoke exactly one cigarette out on the patio most days."
2. Realize that help can come from anyone at any time.
I have heard of support coming from all kinds of people, not just family [read Post 40: Five Key Differences Between Home Health Care and Home (Provider/Caregiver) Care].
"I have a couple friends that bring me bread and other treats since they know I have a hard time getting out. I met them when they rang my doorbell. They're Jehovah's Witnesses - I'm not - and they're such good people. In fact, they're the ones who called the paramedics for me last week when I couldn't catch my breath."
"One of the women in the knitting circle lives nearby so she picks me up and we go together. It's been so hard since the cardiologist said I can't drive, but I get by."
"The gardener was working on the house next door, and I asked how much it would cost to mow our patch of grass, and he did it without charge! Now he just mows our lawn when he does our neighbor's. It's such a relief. I don't have to feel so embarrassed about our place. I can't imagine what the neighbors were thinking when the grass grew past our ankles!"
Most people want to be helpful in some way. A person who feels that they have truly been helpful tends to feel pleasure and satisfaction. This feeling can come after any type of helpful action, ranging from providing directions to the lost neighborhood newcomer to babysitting a niece for the weekend to taking out and bringing back the garbage bin for the elderly man next door.
Uncertainty about how a person can be helpful - and if they would even be helpful - may keep a person from offering to help or taking definitive action towards helping.
A caregiver's blanket or vague request for help likely results in people assuming "someone else will take care of it" and therefore not responding to the request. The caregiver will likely receive more positive responses if they were to ask a specific person for specific tasks.
"Dan, the next time you're getting groceries, can you pick up milk, eggs, and bread?"
3. Be flexible and open to other people's ways of doing things.
I can imagine that a caregiver who provides daily care and has established a particular routine and procedures would feel strongly about their own routine and procedures. Even with the most detailed instructions to a person offering to help, that person may end up completing tasks with changes to the usual routine or procedure.
Keep an open mind about this as most people have good intentions and every person has different ways of completing tasks.
From personal experience, I have met a mom who felt rage when her mother forgot to mix rice powder in her baby's formula. I have also met a mom who felt passionately against her mother in law mixing rice powder in her baby's formula. In both instances, the baby was healthy and growing well. What drove the anger for each mom?
A caregiver might hear that her brother had taken their father to Walmart and Home Depot to run errands with him instead of wheeling their father laps around the mall. If the caregiver started to feel upset, I would ask the caregiver to step back and ask themself, "Was there any harm done?"
If not, then ask, "Why am I so upset? Am I feeling jealous that perhaps Dad enjoyed this outing with my brother more than he does to the mall with me? Am I feeling insecure that someone else came up with the idea, not me? Am I feeling a loss of control because the trip happened without my knowing?"
I would urge the caregiver to keep in mind their goals. "I want Dad to enjoy this time outside the house. I want him to enjoy time with his other children. I want to have occasional breaks for myself. I got all three. I should let go that it wasn't done my way."
Criticizing or disparaging another person's efforts may result in the other person becoming too intimidated to agree to help again. They may feel defensive and prefer to avoid any situation that could potentially upset the caregiver, including providing assistance.
Even if another person's efforts resulted in potential harm, explaining what to do differently and why in a calm manner is usually better received than yelling or using a tone that evokes strong negative emotions.
4. Feel and show gratitude for all help.
It is wonderful when the caregiver receives the help they specifically ask for. Some need help with driving and transportation. Some need help with yard work. Some need help with financial payments. Some need help with physical caregiving. Some need help with supervision of their loved one.
Many times the caregiver does not get exactly the help they had in mind.
Sometimes the help actually causes a greater burden. "I like the visits, but I have to clean the house every time they come." "Where do I put all these coloring books?"
Even if the "help" received is unexpected, or even unwanted at the time, it might be easier to feel gratitude if the caregiver focuses on the fact that another person is acknowledging and respecting their struggles and efforts instead of ignoring the caregiver or taking the caregiver's efforts for granted.
Feeling gratitude can reframe how the caregiver views support provided in an unexpected or unwanted manner. Showing gratitude would likely encourage the other person to agree to future requests for help.
In addition, a few respectful words to explain exactly how the caregiver needs help may result in more meaningful help in the future.
5. Accept that sometimes people will not agree to requests for help.
Sometimes a person will not agree to a specific request for help.
It could be the wrong time. "We have a soccer game every weekend. I won't be able to take her."
It could be discomfort with what the person is asked to do. "I don't feel comfortable helping to bathe or dress her. I don't feel comfortable with any bathroom stuff."
It could be insecurity with their own abilities. "That's a lot of medications bottles. What if I get confused and give him a wrong medication?"
Adjusting the request for help to what is more in line with a person's personal interests, strengths, abilities, or lifestyle may increase the likelihood that the person will agree to offer assistance.
"Well, I don't have to go in to work Wednesday mornings. I can watch her then."
"Sure, I'll clean the house - vacuum, mop, cook, make the beds, do the laundry - and you can do the bathroom stuff."
"I would be happy to sit with him and keep him company. I may not do medications, but I can play cards!"
If modified requests for help still result in a "no," let go of the embarrassment, frustration, bitterness, or anger that may follow. A "no" may not be due to the caregiver asking for help and rather due to personal issues on the part of the person declining to help. Accept this and move on.
Dear caregiver, I hope the above suggestions are helpful in case you ever find yourself wondering how to ask for help (read Post 41: Is This Caregiver Burnout? - 20 Signs of Potential Burnout). Realize that even the "experts" in caregiving - nurses and aides in hospitals, facilities, and homes - work in shifts. They lean on each other for support. Leaning on others and asking for help may be one of the most important things a caregiver can do to provide caregiving the way they want for as long as they want (read Post 42: Thirteen Suggestions for Coping with Caregiving and Decreasing Risk of Burnout).