Tilo's Perspective on "Role Reversal"

Tilo is a former work colleague and good friend of mine.  As I did during my previous interviews, I provided Tilo with seven questions.

Below is his input to these questions.  I thank Tilo for his time, openness and contribution to Carolyn’s and my newsletter!  I’m confident his insights will be helpful to you too!
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Question 1:  You read our “Role Reversal” newsletter.  What do you like about it?  To which extent do you think our newsletter “has indeed struck a need”?

Input from Tilo:  The key feature of the newsletter is that it feels authentic and close to a reality that many people experience and feel.  The stories speak to the heart of people providing care for parents and close relatives, in which cases role reversal happens.

When I read the newsletter for the first time, two things happened to me:

1. I remembered the period from 1989 to 1998, during which my father needed care, in particular after the sudden death of my mother in 1993.  At the age of 21 and as the youngest of 3 children, I needed to step up as a caregiver for 4 months and organize the legal guardianship for my father, make arrangements with a nursing home, and give him continuous 24 hour-a-day care.  My father had suffered a stroke in 1989, which left him slightly paralyzed on the right half of his body and face.  He was disoriented with respect to both time and place, and could not handle his own administration, prepare meals, or go shopping, to name a few tasks.  For me, these 4 months in 1993 were extremely difficult, but helped me to grow and understand what it means first-hand to care for someone.

2. It became explicitly clear for me that the period between 1989 and 1998 was my first exposure to what the duties of a parent entail.

Question 2:  You accompanied your father during his end-of-life illness.  What did you find most difficult about the experience?

Input from Tilo:  Most challenging was the helplessness I experienced at times, in particular assuming responsibility and being accountable for things I was not familiar with…starting at the age of 18 partially, and at the age of 21 completely…as well as making decisions I had not been exposed to before.

The combination of these challenges and the unfriendly (and sometimes even hostile) behavior my father exhibited was especially difficult.  I acted with the best intent, in a loving way, and always in his interest, and he just ignored this and called me the worst of all enemies.

Surely, his behavior was prompted by the sudden loss of his wife.  Some people react with aggression.  So too did my father at times.

Interestingly enough, my father’s behavior changed completely once he was in a nursing home, and I moved further away to resume my undergraduate studies.  Suddenly, the roles reversed again.  I became a visitor in my father’s “home”, and he could resume his role as a father.

These were the “good times” again!  During this period, I met my future wife, introduced her to my father, and he immediately embraced and kissed her – a completely different man.

Question 3:  You’ve said your parents-in-law are showing signs of dementia.  What makes you think that?

Input from Tilo:  Things they could do easily a few years ago have become more difficult.  Here are a few examples:

• Driving a car (particularly at night or long distance)

• Understanding the consequences of situations (e.g. that the telephone does not work if their Internet at home is down)

• Organizing things (e.g. COVID vaccination, birthday events, Sunday trips)

Furthermore, my parents-in-law tend to plan long-term (e.g. a mortgage, or rental contract). They evidently don’t understand that, at the age of 80, and with their disease background, they might want to plan with a higher degree of flexibility.  To be honest, my parents-in-law did just that a few years ago.

Other signs are the topics we talk about. A few years ago, these topics were much broader, for example, world politics, local politics, the economy, and matters of daily life. Now, topics of conversation have been reduced to matters in their daily lives, and some local politics and events.

Question 4:  How have your experiences with your father, and now with your parents-in-law, affected your relationship with them, and your wife and children?

Input from Tilo:  Clearly, I learned to provide care very early in my life – and the hard way.  At a young age, I had to take care of someone else and put my own interests on the back burner.

As I mentioned before, my father was a father again when he retrieved his independence while in the nursing home.  This improved our relationship significantly.

With my parents-in-law, I see an increasing dependence.  My wife and I avoid overloading them with watching over our three sons on days on which my wife and I both work.

At the moment, there is an increasing level of “care”, but this is limited to administrative tasks, and maybe Sunday trips, or going to doctor’s appointments.  However, I strongly believe the level of care my parents-in-law require will increase in the foreseeable future.

A few years ago, my father-in-law commented to my wife, “Since you are a nurse, I trust you will take care of us when we get older and our health gets worse”.  My wife did not react, and I told him very clearly that we, at some point, will need to engage professional help and consider a nursing home.  He was quite shocked, and there was some discussion.

My rationale was based on the experience I had had with my own parents.  Since my mother did not recognize the need for help early enough, she became overburdened and passed away too early.  For me, it was important to keep the “role reversal” at a level which allowed my father adequte privacy, as well as to provide him with enough independence and pride so he could fulfill his role as a caring father.

In private, my mother-in-law thanked me for my clear statement towards my father-in-law.  She had evidently had the same experience caring for her father!

Since this event a few years ago, we haven’t talked about the topic of care again.  However, I recently learned that my parents-in-law are discussing moving closer to us and assessing the option of assisted living facilities nearby!

Question 5:  What kind of support did you receive with your father then, and to which degree are you and your wife receiving support with your parents-in-law now?

Input from Tilo:  During the situation with my father, I received support from my older brother…as much as he could give, considering he was starting his first job…and limited support from my older sister, as she lived 150 km away and had 3 very young children at the time.

I think it would have helped me to either have professional support for my father, or at least as a “shelter” for me to share my feelings and recharge my battery.  For a few weeks during the most difficult time, I received support from an aunt in Eastern Germany.  She wasn’t close to the family, but it helped to have “someone” at home when I needed to go shopping, or organize things like legal guardianship, or the nursing home.

We have to remember that the global Internet and E-Mail / Web-Browsers weren’t widespread in 1993 … only snail mail, phone calls, and personal meetings were possible!

For my parents-in-law, we do not get support other than maybe psychological support from my wife’s sister.  However, at the moment, we don’t need more support.  At the same time, we are discussing and thinking about the support we may need!

Question 6:  What kind of support would you like to see more of, and less of?

Input from Tilo:  There has to be more support for the caregivers (including family members) in varied levels of intensity.  I am not such a proponent of pure financial support.  Instead, I support increasing the availability of nursing home options that are close enough to the place of residence of either the elderly people who require care, or of their close relatives, so that visitation is made easier. 

Question 7:  What would you say to someone who is faced with a loved one’s aging process now, or may be faced with in the foreseeable future?

Input from Tilo:  Clearly, do NOT make caring for someone your own destiny, but rather try to maintain a close, emotional relationship with your loved one.  People who need care may often want a level of privacy and independence that a close physical relationship would not be able to cope with.  If a relationship needs to change from a “loved one – loved one” to a “caregiver – loved one”, there is a significant risk that the relationship could suffer if the physical distance between the two parties becomes too close.  This is very sad and should be avoided.

My own experience taught me that maintaining a) a certain physical distance and b) the (normal) roles for as long as possible helped me to have a loving relationship with my father.  As a result, the care provided remained on an emotional level, and not on a physical level.
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Thanks again to my friend Tilo for his time and candidness!  Please feel free to comment on Tilo’s input, and to share it with others. 

Of course, Carolyn and I continue to welcome the opportunity to interview you, so please let us know if you’re interested.