The hidden stress on female caregivers.

So many people are embarrassed to admit that being a caregiver is not part of who they are. That makes the whole experience that much harder. They labor along under the expectations of society, meanwhile taking care of someone who is very ill.

Women are expected to selflessly drop everything to take care of a sick relative, regardless of ability, interest, or skill. Simply being female doesn’t mean that you are also a cook, a nurse, a counselor. These are skills that must be learned. You don’t suddenly know how to care for someone who is terminally ill. Nor do you suddenly have the desire to, just because it is expected of you.

What about your income in the meantime? You don’t still get to take in a paycheck when you quit your job to care for a relative. There is the Family Leave Act – but that only ensures that your job can’t fire you for going on leave. They have to give you a job back. It may not be the job that you had, however. It also does not mean that you will get paid in the meantime. It is leave without pay.

The caregiver’s closeness to their relative is irrelevant. The mother is abusive? Father raped her? Brother stole, lied to her? Mother and father in law are dismissive and treat her like she is stupid? Doesn’t matter – your duty is to tend them, because you are a woman.

This is unreasonable.

There is a reason that my “Death Guilt” post always gets a lot of hits. People don’t talk about this stuff. We should.

When a man is well enough to go home from the hospital but not well enough to take care of himself, he’s sent home if he has a wife there. When the same thing happens with a woman, she’s sent to a nursing home to recuperate. It is assumed that the wife will know how – and be able to (mentally and emotionally) take care of him. It is assumed that a man will not. This is insulting to both sexes.

I’ve heard from people who work in nursing homes that they judge a family that doesn’t visit. They think they are selfish. They don’t know the history of the relationship. They have no way of knowing how abusive (mentally, emotionally, physically, psychologically) the person was to their family members. The effects of this abuse remain even when (if) the abuse stops. They may never go away.

Sometimes the abuse stops because the person is no longer able to be abusive – not because they don’t want to. It is far harder to hit someone when you have Parkinson’s disease. It is far harder to insult your children when you have dementia and can’t even remember that they ARE your children.

Being a caregiver should be a gift, not a demand. It should be because you want to, not because it is expected.

Just because your parents gave you life does not mean that you have to take them into your home and care for them when they get old. They chose to have you. You did not choose to have them. This is an unequal relationship.

When you marry, you marry that person – not their family. You make a legal statement that you will stay with them regardless of their health. You do not make the same promises to their parents. There is nothing about the marriage vows that obligates you to sacrifice yourself to take care of them. This is an unspoken assumption that is damaging and must be called out.

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Poem – Guilt and expected death

There’s a guilty feeling the caregiver has
when their loved one dies.
Be it spouse, parent, child,
you’ve taken care of them
for a long time
and they have finally
passed on.

Nobody talks about this.
They talk about how hard it is
to take care of
someone you love
for a long time,
someone who is terminally ill.
Someone who isn’t going
to get better,
and the only cure
is the grave.

Your life is finally back
to being yours.
Your time is yours.

You should feel bad if you
didn’t
give your time
to help them
– but you did, and now it is over.

There shouldn’t be guilt
about surviving,
guilt about feeling relieved
that it is over,
guilt about being glad
your duty is done.
But there is.

You are glad for them
that they are no longer suffering,
but also glad for yourself
that you can do
what you want to do
again.

You aren’t so crass as to say
you’re glad
they are dead,
but you are.

It is a weird feeling,
made weirder
by the mixture of grief,
the exhaustion of being
an unpaid,
untrained nurse,
there 24/7.

Hole in the roof

Let’s read the story of Jesus and the people who cut a hole in the roof to get their sick friend to him for healing.

(This is in the American Standard Version, which is from 1901 and thus free to use. Please feel free to use any translation you like for a more understandable version. The website BibleGateway is very helpful for switching between translations.)

Mark 2:1-5
And when he entered again into Capernaum after some days, it was noised that he was in the house. 2 And many were gathered together, so that there was no longer room for them, no, not even about the door: and he spake the word unto them. 3 And they come, bringing unto him a man sick of the palsy, borne of four. 4 And when they could not come nigh unto him for the crowd, they uncovered the roof where he was: and when they had broken it up, they let down the bed whereon the sick of the palsy lay. 5 And Jesus seeing their faith saith unto the sick of the palsy, Son, thy sins are forgiven.

Imagine the scene. Jesus is home, and everybody has found out. He wants some rest, but the crowds won’t let him. They are desperate for his message and his healing.

Now imagine yourself in the scene. You are there, with all those people.

Read the passage out loud, and see what sticks out for you. Does anything resonate with what you are experiencing now? Does anything seem confusing? Ask God to help you understand it.

Do you identify with any of the characters?

Are you Jesus just trying have a moment of peace? He was constantly trying to have some time for himself, and the crowds were forever finding him. We all need time to recharge. Do you feel like you are constantly helping others yet never taking time for yourself? Where do you go to fill your cup?

Are you one of the four friends desperate to take care of your friend who is sick? How do you feel? How long have you been carrying him? We carry our friends in prayer to Jesus. Who is on your prayer list? How long have they been there?

Are you the friend who is on the litter, suffering from palsy? How does the bed feel? Are you anxious because your friends have lifted you up really high? How do you feel about going to see Jesus this way? Excited? Anxious? Embarrassed? Sometimes we need healing so badly that it takes desperate measures to make it happen.

Are you a member of the crowd? Are you right up close, packed in tight, or further towards the edge, where you can’t hear very well? What do you see? What do you hear? Do you want to get further back, or closer?

Are you Jesus’ parents, wondering how his ministry got so big? Did you expect the crowd would be so large? How are you going to pay for the roof to be repaired?

It’s okay to identify with several of the characters.

Think about the roof. Have you ever had to go in an unusual way to seek healing?

Think about the friends. The person who needed healing wasn’t even able to get there. His friends carried him there. Do you have friends like that? Are you that kind of friend?

Notice it was because of the faith of the friends that Jesus healed the sick man. The sick man didn’t have to do anything. How does that make you feel?

Jesus often says “Your faith has healed you.” Think about that. What does that mean to you?

Compassion fatigue and the yetzer hara

Compassion fatigue is a real thing. It is devastating and results in many good people giving up. We forget to take time for ourselves to heal. We give and give and give until we have nothing left for ourselves. We feel that our work is never done.

This is the work of the yetzer hara, the Jewish idea of the “evil inclination”. It says that we have to do it all and save everybody. It says that if we lose one, we’ve failed completely. It says why even try if we can’t fix everybody?

But we don’t fix anybody. We are there to help, and they have to want it. They have to do the real work.

The longstanding idea is that a person has to hit rock bottom to get help, and that they have to ask for it. They have to bring themselves to treatment – it can’t be forced on them.

In a way, this is frustrating. We don’t wait to do CPR on a person who has a heart attack. We don’t ask a drowning person if they want to be rescued. We just do it. We don’t stop first and get them to sign a consent form.

But mental health, often intermingled with substance abuse, is different. To be truly mentally healthy requires not just a change in mindset, but a change in lifestyle. Everything has to shift to keep the process going correctly.

Thus it isn’t up to the caregiver or the facilitator or the mental health provider to “make” the person well. It is up to her or him to keep the ball rolling. The caregiver shows the path – the client has to walk on it.

They have to take their medicine. They have to go to their doctor’s appointments. They have to reduce stress. They have to eat well. They have to exercise daily. They have to get enough sleep. They have to do all the little things that add up to the big thing, the only thing – being stable and sober and well. Balance is hard to achieve. It takes a lot of work.

Getting mentally healthy isn’t like buying a new car. You want to get to “health” and you are tired of walking there. So you want to make a quick change and get there the fast way. You buy a new car and fill it up with gas. But when you get there that way, you still don’t know how to really get there on your own.

It is more like buying a piece of the car, a day at a time. Every day you work closer to the goal. Eventually you have enough pieces that you are able to learn how to put it together. Then you have to get lessons on how to drive it. Then you practice. Finally, you can do it.

It takes years, but all that hard work means that you know how to do this on your own. It means that when the car breaks down, you know how to put it back together. It means you know where the pieces come from. You learn that you have to maintain that car every day or it will break down.

You can’t be driven to mental health. You have to get there on your own.

It should be the goal of the mental health provider to show the client what pieces will work, how to maintain them, and how to use them. They aren’t there to drive the client but to teach them how to drive themselves.

Thus – don’t feel guilty if a person seems stuck on the road. They have to do the work. They have to want to get better. It seems frustrating to watch them struggle, but that struggle is what forces them to make a decision. Work on getting healthy, or go the easy route and stay sick? Pain is a strong motivator to make better decisions.

It is like a baby bird. If you help it get out of its shell, it won’t have built up the muscles to survive. It can’t get help flying either – it has to be strong enough to fly on its own. If you cheat it of the work, it will fail.

Meanwhile, as a caregiver, you have to take extra care of yourself. Don’t get pulled under by the drowning people. Take extra time for yourself. Focus on what you can do, not what you can’t. Focus on your successes. And remember, sometimes you can’t see results right away. Sometimes the result, the reward, of your hard work will “bloom” later, in a way you’ll never see. Trust the process.

Saving the starfish

There’s a story that one day a boy was walking along the seashore. A lot of starfish were being washed up by the waves. They were slowly dying because they were being exposed to the air. He started picking up the starfish one by one and flinging them back into the ocean. A man comes walking by and he sees the little boy doing this. He says ‘Look at all these other starfish. You’re not helping them at all. You’re not making a difference in their lives.” The little boy said “I just made a difference in this one’s life.”

“What we focus on expands”, Oprah Winfrey says. It is very hard when you’re a compassionate or empathetic person. We tend to notice all the people we weren’t able to help. And while it is important to acknowledge loss, it is also important to not focus on just the bad. We have to open ourselves up and intentionally and consciously point ourselves towards that which we are doing which is helping.

We can’t save them all. We can’t help them all. But we are just one part of a huge ocean of people who are helping. We are not alone. We can’t all be Mother Teresa. But she didn’t do it alone either. She had hundreds of nuns working with her whose names we don’t know. Each one of them helped who she was given to help that day. Each one of them did what she could to make that person’s life better. She didn’t do it all but together they did.

If we focus on what we can’t do or who we haven’t saved then we lose energy. If we can help one person, it makes a difference in that person’s life. If we don’t help, locked up in our worry about all that we can’t do, then we’ll do even less.

Help who you can. Leave the rest for others to help. That gives them the joy of helping. By leaving something for others to do, you’ve actually given them a gift. Each of us wants to feel needed. A lot of people feel needed by helping others. When you do it all, you are taking away someone’s task. So you are actually doing a good deed by not doing it all.

Advice to caregivers

Your life is not your own when someone that you love is sick. When you are the caregiver you have to change everything you do. It is kind of like living under siege.

You have to make sure that your car never goes below at least a quarter tank of gas. In fact having half a gas or more at all times is really useful. You have to make sure that you have an overnight bag packed in your car or at least in your house at all times. You’ll need a two or three day supply of clothes. Actually, having it packed in your car is better because you might get the call from a nurse while you were at work, and you don’t have time to go home and get your supplies. You have to make sure that you have a three day supply of medicine with you at all times too.

You can’t leave any of this to chance or to the last minute. Taking care of someone who is terminally ill is a lot like living in a war zone. You have to do what you can when you can. There is no guarantee of any other chance to relax a refresh yourself. You have to take care of yourself so you can take care of them.

You can’t do without food. Eating snacks and drinking sodas doesn’t count. Nothing from a vending machine is food. You have to make a point of eating real food, even if you don’t feel like eating. In fact, you won’t feel like it, but that doesn’t mean you can do without it. Cars have to have gasoline in them to go. Bodies need food. Skip all sugars and caffeine – they will make you crash.

You’ll need to make a point of getting as much sleep as possible. This doesn’t mean oversleeping. But take the time to sleep when you can. Sleep is restorative.

Get exercise – go walk up and down the halls. Stretch.

Take a notebook and write. Writing helps process feelings and gets them out. Writing can help you understand what you are thinking.

All of your own personal chores have to be dealt with immediately. Don’t leave the mowing for another day. Don’t leave doing laundry for another day. You don’t have another day. That day is when you get called to go have to take care of somebody else’s problem.

You have to keep your own head above water before you can rescue someone else. If you’re not very good at swimming and you try and rescue someone else you will both drown.

You have to be able to shift gears. Sometimes the problem is shifting out of this emergency mode once you return to normal. Nothing is ever the same after you’ve taken care of someone who is dying. It’s like you had to grow an extra arm. So you don’t really know what to do with it once everything is back to normal. And of course it never is normal once they die. You are without someone you cared for.

Being a caregiver to a parent when the relationship was bad is extra hard. They have not taught you how to take control. They have not taught you how to be an adult. They have taught you your whole life that your opinion doesn’t matter. They have taught you your whole life that whatever you think is not okay. So now you don’t have the legs to stand on to take care of them. You can’t ask them what to do because they have reverted into being like a child. Now you have to be the adult, and you’ve not had any practice at it.

Unappreciated – on gifts and on using your words

I know a lady who has jumped in to help her husband with his parents. Really, it is more accurate to say she has taken over the care-giving chore. They are getting older and needing more help. She feels like it is her responsibility to help out. The problem is that she wasn’t asked for her help, and nobody is taking her advice anyway.

She feels ignored and devalued.

Plenty of women feel it is their wifely duty to help when their parents in law get older. They feel that is a chore that women take care of. They feel that their husbands are inept at care-giving. They then shoulder the burden all by themselves, and they feel put upon.

There are a lot of problems to this.

A gift that is given freely is a good gift. It isn’t a gift if it has to be given. It isn’t a gift if it is given under duress. Even if nobody asked, but the giver felt obliged, it is duress.

Now, of course, that is all on the giver’s head. It is never a good idea to make up a script. If nobody told you what was expected of you, but you just felt that was something you had to do and did it anyway and felt unhappy about it, that is your problem.

Another problem is that it takes away responsibility from the husband. Men are just as able to be caregivers as women. There is nothing biological about being a caregiver. There is something in our society about it, but that isn’t set in stone. Roles can change, and often should.

If a wife takes over the care-giving responsibilities of her parents in law, the husband may feel grateful. That is one less chore he has to deal with. Say he always mowed the lawn, but she always felt he was doing it poorly. One day, she takes over that responsibility without saying anything to him. He notices what she is doing, realizes that this means he has more time to do what he wants to do, and lets her. She, then, feels resentment that her hard work isn’t appreciated.

It isn’t a gift. She didn’t do that out of love, but out of something darker.

There is a lot of unspoken expectation mixed up in all of this, and because of that, a lot of feelings will get hurt. Un-asked for promises and rewards aren’t forthcoming, because they weren’t put in the contract. There is no “if I do this, then you’ll do that” that is mentioned. The wife will feel unappreciated, and the husband will simply feel like she is doing something she wants to do.

She’ll continue helping (read “taking over”) with the care-giving of her parents in law, and he’ll keep not getting that she really doesn’t want to do it because she hasn’t said anything about it.

People can’t read minds. That is why we invented language.

Notice how small children get frustrated when they want something but they don’t use their words. They are hungry, or tired, or want their favorite toy, and all they can do is wail. Their parents can’t understand what they want, so the child’s needs continue to not be met, so the wails continue and get louder.

“Use your words” they might say, and the child has to slow down long enough to get out what is the problem. Then healing can start.

As long as the wife continues to do something she doesn’t really want to do, something that really should be the responsibility of her husband (because after all, they are his parents), resentment will build. She won’t wail outwardly, but she will seethe inwardly. It will come out in ugly ways.

It isn’t his responsibility to second guess her. It is her responsibility to talk, to say how she feels.