What to Do When Someone Isn't Being a Good Caregiver

Black Cat Back · ‎03-21-2010

I took care of both my parents as their sole caregiver a few years ago. My Mom had heart issues and passed away, and two years later, my Dad had been diagnosed with cancer and passed away. I was their advocate, their support and took care of their needs. I was assertive in asking questions and if the doctors weren't responding as they should, I would find every way possible to get answers.

I have a friend who at 61 (my same age) is blessed that both her parents are still alive. Her father and mother are both 88. The father has multiple health issues, the mother is starting to show dementia signs. My friend is married, no children. Her mother takes her father to all his appointments, not my friend. Both parents have lied to my friend after a fall, afraid to tell her because they know she's so busy.

I moved in with my parents when my mom got sick and was with my dad until he passed. I saw it all. I caught my dad once when he almost fell, I bathed my mom when she couldn't do it after open heart surgery, and I helped my father in so many ways in his last 6 months. I went with them to doctor appointments to hear what the doctors told them. I was their advocate, plain and simple.

This friend texted me yesterday to say her dad went into atrial fibrillation the previous night and they were concerned. She said they contacted his Mayo Clinic cardiologist via portal message because she said, "Mayo doctors don't give out phone numbers, you can only send a portal message." I was stunned.

I texted her later to ask what the doctor said and she said her father hadn't heard back yet. That was 24 hours later! If that was my father, I'd get him to the ER. She said she wasn't going to check on him until the morning. I asked her this morning if the doctor got back to him, she said no they are still waiting!!! I worked in a hospital years ago, this didn't sound right. I called Mayo Clinic (I'm still a caregiver at heart) and asked if they had rules that patients aren't allowed to call cardiologists and only leave portal messages. The woman I talked to said absolutely no. If it's after hours, then call the main line and an on-call doctor will call back. She said the portal has been known to crash.

I don't know where my friend is getting this information, I suspect from the father who isn't correct. My friend is an intelligent woman at work and in her life. She's religious, college educated, very much into health and knows all the names of certain meds and what not. Yet she's relying on a portal message at the expense of her father's health.

I'm flabbergasted. If that were my father, I'd couldn't let all this time go by just waiting and thinking that was ok. I don't know if I should tell her I contacted Mayo myself and she needs to place a call or go to their ER opened 24/7! Sometimes people don't like you to tell them what to do.

I can't believe how cavelier she is. If he has a stroke or worse, it could have been prevented.

Thanks for taking time to read my post.

Desertdi · ‎03-13-2010

If the patient is in distress, you need to call 911. (Yes, I WAS my mother's caretaker.)

♥Surface of the Sun♥

Kachina624 · ‎03-10-2010

@Black Cat Back. Understand that in most families, membere can't give up their lives, drop everything and devote themselves to care giving. People have their lives to live, many have jobs or other responsibilities.

Your friends basic problem is a complete lack of common sense. She may suffer from "big important doctor imtimidation" and is scared to make waves. She need to be told on no uncertain terms that a person having a cardiac episode cannot wait indefinitely for medical care. She should have called 911and turned dear old dad over to the EMTs.

If she just doesn't care, is irresponsible, or is too busy, she needs to make alternate arrangements for her parents. They deserve better care. Nobody says SHE has to care for them.

New Mexico☀️Land Of Enchantment

Wsmom · ‎03-09-2010

@Black Cat Back, if she doesn't have a lot of experience with docs she may just think that is the norm. Can you just tell her she needs to make the call and you will help her find the number if she needs help? IMO people who don't have experience don't realize they have to be the advocate and push and stay on top of it when need be.

If she can't get right to a conversation with the doc, maybe say the portal is a great idea so it is in writing but also you really need to call. As an example with my oncologist I always use the portal to fully explain, but also call the office to say I sent a message but I need to make sure it gets to the doc sooner rather than later. They look it up, read it to confirm and send it right to the nurse.

Again, if your friend doesn't have a lot of experience with this she may welcome your suggestions and help.

Etoile308 · ‎01-04-2014

All family members are different. Some accept the responsibility out of love and because they view it as the right thing to do, some put in minimal effort or just put on a show, some can't be bothered with family member's wellbeing.

All you can do is listen, make suggestions and explain what's been your experience. But it sounds like there is a lack of communication on a few points. Perhaps it's time they explore some in home help or other living arrangements.

Black Cat Back · ‎03-21-2010

@Wsmom wrote:
@Black Cat Back, if she doesn't have a lot of experience with docs she may just think that is the norm. Can you just tell her she needs to make the call and you will help her find the number if she needs help? IMO people who don't have experience don't realize they have to be the advocate and push and stay on top of it when need be.

If she can't get right to a conversation with the doc, maybe say the portal is a great idea so it is in writing but also you really need to call. As an example with my oncologist I always use the portal to fully explain, but also call the office to say I sent a message but I need to make sure it gets to the doc sooner rather than later. They look it up, read it to confirm and send it right to the nurse.

Again, if your friend doesn't have a lot of experience with this she may welcome your suggestions and help.

She is knowledgeable about doctors. She sees a lot of doctors herself. She's an only child and I think she is delusioned that mom and dad will always be around and mom will take care of it. Mom... who is suffering from early dementia. It's ignorant and dangerous.

I worked 40 hours a week when I cared for my parents. I couldn't afford to hire anyone to care for them. They are my parents, I was there for them and was proud to be and honored to be there when they needed me.

Etoile308 · ‎01-04-2014

@Black Cat Back, you're a sweet and thoughtful friend to her to care so much. I think people who have experienced what you have are more aware and sensitive to these type of situations.

Black Cat Back · ‎03-21-2010

@Etoile308 wrote:
@Black Cat Back, you're a sweet and thoughtful friend to her to care so much. I think people who have experienced what you have are more aware and sensitive to these type of situations.

Thank you so much. I'd give anything to have my parents back. It just saddens me that it takes just a simple thing of following up and making a call that could save a life or at least get her father the care he needs.

FancyPhillyshopper · ‎05-02-2017

Your perspective is yours alone. You cannot judge others by what you did for your parents. Some people consider it their duty to move back in to take care of their parents--others may live far away, or have multiple obligations that would prevent them from making such a drastic change. Neither way is right, or better. Caregivers can burn out quickly, and become ill themselves.

You have been a professional in the world of medicine, so you should not be critical of those who do not have your knowledge or experience.

Maybe your friends' parents do not want to be a burden to her, and they want her to live her own life. Many older people want to still be independent, and not ask for help. You say the parents are lying as if this is your business--why do you want to get involved and disrupt their family relationship?

Perhaps they should have a family meeting, and the daughter can inquire if the parents want to hire an assistant or a professional caregiver.

Nevertheless, it is the family's choice alone to decide how to proceed. You will just have to be content that you did what you wanted for your parents, and feel happy and proud about it, but others have to make the best decision for themselves, no matter if you approve or not.