Cancer Blog
By Brian Zimmerman
Begun on July 31, 2021
Email: dyingman1@yahoo.com
My Dying Words
Entry #4a:
October 4, 2021
Here’s a redacted and slightly edited version of my response to an email (on October 4) from someone with concerns about my post concerning what I believe is our responsibility to provide care for family members at any age. I thought it might be helpful to others who had questions or concerns and so am posting it to my blog:
I was very moved by your email as it’s obvious this topic is a sensitive one for you and with very good reason, so I’ll try to respond to give some more of my thoughts that weren’t on the blog:
1. Your amazing sacrifice as a teenager let you experience firsthand what I only witnessed during my 6 years as a home health PT, viz., that caring for someone in your home can be extraordinarily difficult. You obviously have been a kind and generous daughter, but know how much it requires to provide that kind of service. The problem with discussions like mine in the blog is that someone who is oblivious to their familial responsibilities may feel no need to think more about the topic versus someone like you who has a tender heart that wants to be obedient and show love and support to those who need help, like parents, but has experienced how daunting that can be.
2. I think of the commandments of the Scriptures (this is my personal view, not some church’s doctrine, so take it with a big grain of salt) as embodying at least two things: they are both a standard or benchmark as well as a goal. It usually takes more than just a recognition of the demand that God speaks to you; it might also require planning and work to meet that standard. For instance, in Rom 13:8 Paul states: “Owe no one anything…”. If you take this in a financial sense (and in the context, Paul obviously has more than that in mind), then if you’re someone deeply in debt (I have a friend (who was a financial advisor) who told me she had a husband and wife who owed something like $50,000-$100,00 on credit cards at one point), though you may come to see that being in deeply in debt is not following God’s word, you know that that standard can’t be immediately met. It has to become a goal as well. The point is that this idea to me has a significant bearing on the issue of elder care: before the absolute need arises, now is the time to start discussing the topic. How much care can someone with your health limitations and other family responsibilities (like raising two teenagers) and possibly limited support from other siblings really provide? And, equally important, how much will your husband’s parents want or be willing to cooperate to permit it to be delivered? I’ll come back to that in a second.
3. One of my points in that blog entry was that caring for the elderly demands more than just one person. Most other cultures have structured themselves the way we European descendants have for child care: primarily provided by the family. We European descendants are much more varied in that care: family, private home babysitting, day care centers, etc. So too with elder care, I think a similar situation exists, other cultures have a built in system to provide elder care (I’m speaking in big generalities, but that has been my observation) whereas yours and my culture (Euro descendants) simply don’t. Most of the time it’s not thought of at all until there’s a crisis, like mom fell and is in the hospital but can’t go home because she can’t care for herself, and, oh yeah, she was her husband’s primary caregiver as well, and the children live in another state. You see my point. This goes to the point I made in #2, viz, this care has to become a goal. Those obstacles can’t be overcome just by recognizing the need for care, but trying to understand how that care can be provided, and often when left so late to plan, there aren’t many good options.
4. So, what can we (the Euro descendants) do as we get to that point? Well, I’ll tell you how it worked when my wife had to care for her mom. After years of living alone, her mom began to fall and break bones. She would come stay with us to “rehab”, which she would do fairly successfully (she was sitting too much and would become weak), then she would return home and the cycle would start all over. Finally, at the third time, I told my wife that we needed to leave the city where we were living currently (and where we were working), and return to our place of birth to provide care for her mom, even though my wife had two siblings living in our home town. And, this change is a common problem as I’ve mentioned before: the parents and children are nowhere physically near each other, so someone is going to have to move, either the parent who needs the care, or the children. For us, it involved both parties. At first it was us moving back to our home town so my wife could travel to her mom’s home weekly to help with grocery shopping, cleaning, etc. Eventually, that wasn’t enough when her mom fell yet again and was injured. This time she moved in with us, but my wife set some parameters up front, such as her mom had to financially assist with paying for aides and for some house cleaning of our home. In other words, it wouldn’t be just us making the sacrifices but also her mom. It was an extended family effort (multi-generational), not just our sacrifice. I had told my wife that if her mom couldn’t recover enough to go home in 6 months, it was doubtful that she would ever return. So, after 10 months, my wife discussed the need for her mom to stay with us and not return home, and, therefore, the need to sell her mom’s home. Her mom was agreeable to staying and to the sale, and so my wife cleaned out the home and sold it. The money went into her mom’s bank account. But, my wife was also providing care 3 days a week for our granddaughters, and now also had her mom to care for. So, she approached her mom with the problem and her (my wife’s) solution: use the money from the sale of her mom’s home to hire aides to help with the care in our home. Her mom agreed and so that’s what was done for two years. But, again, I told my wife that my observation from home health was that when someone reaches the point of requiring total care (as your mom did), then it becomes virtually impossible for an individual to provide that amount of care in home without completely burning out the caregiver. As my wife’s mom began to approach that point, my wife arranged for her mom to attend adult day care once a week. It got her mom out of the house to be with other people and, again, gave my wife some respite from that responsibility. Eventually, her mom decided that she enjoyed the activities and people so much and her mom also was able to see that she was requiring more help than my wife and I could provide (I was still working full time, and had had at one point to pick her up off the floor during the night 3x in one week), that she volunteered to go to live in the nursing home that had provided the adult day care. We were more than a little surprised, but exceedingly grateful that she saw that we just didn’t have the resources to provide 7×24 care for her.
So, you can see there’s a progression here, not just an all or nothing, and it eventually required nursing home care for the 7×24 phase.
My wife has offered to get together with you (and your husband) to discuss what she has learned and is still learning about caring for her mom. For instance, are the parents willing to move? Is it possible they own a home with equity to help with their care?, etc.
I apologize for such a long email, but I was worried that my attempt to prod people into thinking about and having family discussions on this topic would overly burden you. It’s kind of like burning your hand and finding that just putting your hand in warm water is amazingly painful. I can certainly understand and sympathize with your sensitivity on this subject.