by Rev. Tess Baumberger
Note: At first they speak mostly to the audience/congregation, but this changes as noted.
Both/All:
I don’t know exactly when it happened
but something began to change
Older person:
Of course, as a parent,
things were always changing
from baby to child,
from child to teenager,
from teenager to young adult,
young adult to adult -
the nature of parenting is change.
Younger person:
We hit some choppy waters now and again,
and it took a while to settle into
a more adult relationship,
but things had settled into a pattern
that felt comfortable and seemed to work.
Older person:
I had always been the one giving care,
the one they came to in a crisis,
the one who cooked holidays meals,
the one who helped out with the grandkids.
Younger person:
They were always there when I needed them.
It was comforting to go there
and have them cook for me,
be able to ease back a little, relax.
Both/All:
I don’t know exactly when it happened
but then something began to change
Younger person:
Then they started needing some help.
First it was yard work and big jobs around the house,
Then more ordinary tasks like shopping and cleaning.
The grandkids started to wear them out,
and holiday meals became more potluck.
Older person:
It was hard not being able to fend for myself,
and I missed seeing the grandkids as much.
I thought THAT was an adjustment.
But I still had my independence, mostly,
could still live on my own and still drive.
Both/All:
I don’t know exactly when it happened
but something began to change
Younger person:
Then came the first falls and forgetfulness.
At first we could write it off as a one-time thing,
but then those one-time happenings became a pattern.
It was scary, my legs giving out from under me,
finding myself places I didn’t recognize,
unable to find my way home.
I tried to hide it because I knew what it meant -
Younger person:
I nearly lost it when I found out how long
it had been going on and how bad it had become.
I couldn’t understand why you made such a fuss
about stopping driving - you could have killed someone!
It was so frustrating that someone so practical
refused to face the facts!
Older person: I knew the risks and wouldn’t want to hurt anyone,
but not being able to drive anymore
meant my independence was gone.
That’s a big thing to lose, on top over everything else.
Younger person:
You could have hurt yourself.
I wanted you to be safe.
I wanted you to be well.
Older person:
I knew the next thing after giving up driving
would be losing my home,
with all my familiar things,
where my memories were strongest.
Both/All:
I don’t know exactly when it happened
but something began to change
Older person:
I feared becoming a burden to you.
I feared you might put me into a home
then leave me there, stop visiting, forget me.
Younger person (to older person):
I’ll admit this situation feels burdensome
but you are not a burden and I won’t forget you.
It’s tough watching such a strong person
becoming weaker, less healthy, less able.
Older person:
It’s tough to lose strength, health, ability.
It’s sad and frustrating and really scary.
Both/All:
It feels like the whole balance of power
has changed and that’s really tough.
Older person:
I don’t like not being able
to be your parent anymore,
to take care of you like I once did.
It feels like now I’m the child
and I don’t want to be treated like one.
Younger person:
You may not be able to take care of me,
you may have to let me take care of you,
but I promise not to treat you like a child.
You will always be my parent
and I will always be your kid.
Older person:
Maybe together we can work it out.
Younger person:
Together we can figure out
a different kind of closeness.
(they embrace)
Both/All:
I don’t know exactly when it happened
but something began to change
I conferred with the other chaplains at the hospice where I work, asking them what they would say in a sermon about when the child becomes the caregiver. One of the chaplains said, “tell them not to boss their parents around. I hate it when people do that.” The bossing around thing happens because when the child becomes the caregiver the whole balance of power in the relationship does change.
Sometimes it’s easier to be bossy than to be sad or scared about what’s happening. It is definitely easier than trying to understand your parents’ perspective but I believe that’s what the principles of our faith call us to do. They call us to practice equity and compassion in this changed relationship, to respect our parents’ inherent worth and dignity, and doing all of that can lead to some serious spiritual growth.
The chaplain who has been doing this work the longest of any of us said, “Tell them to get as much outside help as they can, so they can still be the child.” This is great advice - if you can possibly afford it, and your parent or loved one really wants to remain at home, then hire a caregiver or seek help from a caseworker who can help you find what’s available for free or at a reduced price.
Some people fall in that place where they cannot afford to pay privately and also have too much to qualify for services. Some either have to or want to do all the caregiving. Sometimes you can arrange to be classified as the patient’s adult foster caregiver and get some compensation for this.
This only works if there’s more than one willing family member or friend, or if one person has lots of outside support. Some organizations, such as visiting nurse associations or a hospice, will arrange brief respite stays for the patient - at a rehab or skilled nursing facility - so the caregivers can get a break, take a vacation, and so on.
This is necessary because caregiving is really tough - it takes a toll that goes beyond the physical demands of caregiving. It is taxing emotionally as well, not the least because there is grief involved in watching the patient’s health decline. Whatever the relationship was before, it is different now. Even if you have always, to some extent, been your parents’ caregiver, now you are in a different way.
It’s hard to say if it is more difficult if the relationship has been strained because it’s also difficult if you have always been close to a loving, nurturing parent. It will be different and unique for each caregiver relationship, because the two people in that relationship are unique. However, no matter how you slice it, this involves change and with change there is always, always loss and always, always grief.
You will cope with your own grief, and your parent will be experiencing a great deal of grief that may come out in ways that are hurtful to you or others you care about. Knowing that this comes from grief can lessen the sting but some of it may remain there, under your skin so to speak, until you forgive and pluck it out. Let it heal.
The other thing I cannot say enough is to take care of yourself. I have seen people drive themselves into the ground trying to do all the caregiving for a sick family member or loved one. Would this person want you to do that? If so, then you should probably take an even longer break! And you know what? Some patient enjoy their respite stays so much they decide they want to remain at the nursing facility or rehab.
This is especially true for people who are sociable. There is a time of adjustment but some people who engage in activities find themselves making friends, and end up less lonely than in a single family home. I know people have a huge fear or nursing homes and skilled nursing facilities, but I have to say they are not all bad.
Some facilities (most of the ones I know) have staff who genuinely care for and about their patients. And don’t judge by the looks of the facilities -some of the dicier looking ones I have seen have the most compassionate staff. Some of the fancy ones put more money into facilities than in caring for their workers, which translates to care that is not as good as some shabby places.
Check them out. Talk with the staff, especially the aides. See how they interact with each other and with the other patients. Stay for an activity or two - visit more than once. Hang out in the parking lot during shift change - how do the workers look? How well are they paid? What are the ratios like? Do they receive benefits? Besides being a justice matter, well-treated staff stay longer, are happier, and can offer better care to patients.
It’s not the end of the world, in other words, if you need to place someone in a facility that can offer care you cannot. This is especially true if you, or their friends, or volunteers can visit often. Sometimes a great facility allows you to be the child again, which is important because you are the child. It makes the shift in the balance of power less extreme, which preserves the dignity of your parent or loved one.
Things can and will and do change when the child becomes the caregiver. With that comes a shift in the balance of power between you, losses of many kinds, and grief. With sufficient support from others for both the patient and the caregiver, this can become a time of resolving issues from the past and finding a new kind of closeness. For closure, of remembrance, and for love. It can be a time when you see the sacred in one another, and come to honor it in a while new way. So may it be.