Family Dynamics And The Caregiver
For those of us in the role of primary caregiver, most of us have had some pushback from a family member regarding a choice/choices made for the person we are caring for.
Depending on who you are caring for, a spouse, child, parent, and who else may be involved in their lives, the dynamics will vary.
This is a drama I have seen play out with the thousands of patients and families I have worked with.
This is also one of my biggest struggles over the last seven years.
Mark and I were both divorced with children when we met. It was a second marriage for both of us when we married three years later. Mark suffered a hemorrhagic stroke and was left disabled, with a permanent brain injury after we had been married only 18 months.
At this time, my children and one of his children were adults and he had one child left in high school.
My in-laws, I learned later, felt they didn’t know me that well because they felt I was “very private” and so this made things very interesting.
Mark had always been the “buffer” between his family and ex-wife. Now I had to deal with part of his life on my own.
Many times in my career, I have seen families come to physical blows over the stress that comes when someone has a major change in their health, is no longer able to speak for themselves, and one family member is left to be “in charge” of everything.
This doesn’t always happen, but I would say it happens more often than not. Everyone feels they know what is best in a given situation. Everyone has their interests, values, and agenda. This can allow you to see the true colors of individuals.
So how do we best deal with conflict, criticism, judgment, and the inevitable feelings of anger, guilt, and fear that we face when we are the primary caregiver and we feel like people are coming at us from every angle?
To be completely transparent, I am a people-pleaser, I do not like conflict and I am an easy pushover.
That is until I see injustice to someone who is in a vulnerable position and someone is mistreating them or taking advantage of them.
I also have a really bad habit of keeping my mouth shut for too long, then when I do say something it comes out over an insignificant issue and I turn into an angry and emotional wreck, which is not helpful to the circumstance, Mark, or any relationships in the family.
This is something I have been working on, but also something I hope I can help others avoid.
Being a primary caregiver, you will be faced with many circumstances that will leave you shaking your head. I’d like to share some things that I wish someone had told me seven years ago.
If you are the primary healthcare decision maker, you can listen to others’ thoughts and concerns, and opinions with respect and an open mind. Ultimately, you have likely been put in the position of making decisions because the person you are caring for trusted you enough to follow their values and beliefs.
For example, Mark and I had many discussions about feeding tubes, intubation, etc. This is only because I worked in hospice and knew what these things meant for many of my patients and families. So going into our situation, I knew 100% that Mark would not want to live without the things he considered the quality of life, because we talked about it so often.
This is a touchy and uncomfortable subject! I know! So cringy! It will likely be something you will or have faced and it’s so awful.
Being the person who is just doing their best to try to keep someone with a major health issue safe and ALIVE, it can feel downright insulting when someone says something like:
Can I have his truck since he won’t be driving anymore?
We should take the good china, to keep it in the family.
Since you never were officially married, we want you to leave the house. (Yes, I’ve seen this happen to a couple who was together for 25 years)
I know the kids are getting social security now, but you still need to pay for XXX!
The things that were said to me after Mark’s brain injury, during his recovery were just astonishing.
Here’s my advice:
Let them be mad, you have a responsibility to the person you care for, not to make everyone else feel better.
Limit interactions with people who are only coming around to ask for things. If they don’t take the hint, ask them to help with care or chores, in my experience that will keep them away for a while.
Remember that NO ONE will ever know what you are going through unless they are in the trenches with you. For that reason, don’t waste your time or energy trying to get them to understand your side.
Every person in the inner circle comes from a different place.
So an ex-spouse will have one perspective, while the brother of the individual will have another.
Always try to be a good listener and remember they are also going through their grief, worry, and trauma.
However, this does not mean they have permission to speak to you disrespectfully or manipulate you into a decision you are not comfortable with.
If it is a parent you are caring for, remember that every sibling will react differently to the situation and that feelings of resentment, confusion, and guilt can all be normal parts of the processing of the event for everyone.
In my 16 years working with patients and families at end of life, I can almost always identify where someone falls in the birth order of the children based on their reactions!
This article does a great job talking about how birth order affects people at the end of life/critical illness situations
When my life was turned upside down by Mark’s subarachnoid hemorrhage, I assumed that brain injury and stroke recovery would be the biggest concerns I’d have to face.
I did not anticipate that absolute circus that would follow because individuals that were in his life, were now telling me how they thought I should change our lives.
Looking back, I know that I did the very best that I could. However, there are things I wish that I had done differently.
My hope is that you focus on the person you are caring for, but also on your own well-being.
Wasting time and energy allowing others to give you instructions, demands, or opinions that go against your own best interest and values is not something you have the luxury of doing.
Caring for an individual after a life-changing event, such as a stroke, TBI or other life-altering event is enough for anyone to manage.
Do your best. Try to be kind. Reach out for help. You may enjoy this article on the blog about maintaining your well-being in the caregiver role:
If you would like to know more details about how I managed to turn things around after Mark’s hemorrhagic stroke, you can get a copy of my book, which also shares some caregiver life hacks that have kept me and Mark thriving over the last seven years, despite multiple obstacles.
The book is on Amazon:
As always, remember I am a real person and read all of my emails! Feel free to reach out to me at: