topic Re: What to Do When Someone Isn't Being a Good Caregiver in Among Friends

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

Black Cat Back — Thu, 14 Sep 2023 02:22:04 GMT

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.

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

Desertdi — Thu, 14 Sep 2023 02:30:09 GMT

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

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

Kachina624 — Thu, 14 Sep 2023 02:44:33 GMT

@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.

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

Wsmom — Thu, 14 Sep 2023 02:48:31 GMT

@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.

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

Etoile308 — Thu, 14 Sep 2023 02:55:32 GMT

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.

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

Black Cat Back — Thu, 14 Sep 2023 02:59:05 GMT

@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.

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

Etoile308 — Thu, 14 Sep 2023 03:10:04 GMT

@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.

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

Black Cat Back — Thu, 14 Sep 2023 03:33:33 GMT

@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.

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

FancyPhillyshopper — Thu, 14 Sep 2023 04:00:29 GMT

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.

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

qbetzforreal — Thu, 14 Sep 2023 04:27:28 GMT

Welcome back Tennisbuf. Hope all is well.

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

GingerHead — Thu, 14 Sep 2023 04:36:37 GMT

My understanding is that afib is a chronic condition and not necessarily considered an emergency so I wouldn't jump to conclusions that your friend isn't being a good caregiver.

It's nice that you're looking out for them though...

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

Black Cat Back — Thu, 14 Sep 2023 05:26:25 GMT

@qbetzforreal

Yeah that's me. You found me out. I changed my name. I've been exposed.

I guess that's your way of saying... this is not a safe environment.

So long... I came in here to share. I don't need to be treated like I've done something wrong changing my name.

But, I should have just stayed away. I never did anything but be nice and supportive on this forum. It feels more like high school to me.

Viva Las Vegas Baby! Clean Up Your Own Backyard!

Elvis Forever!

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

BlueFinch — Thu, 14 Sep 2023 06:41:20 GMT

I'm wondering how she diagnosed her dad 'going into A-fib, unless she has some type of cardiac monitor, or this has been an intermittent, recurring issue. An irregular heartbeat isn't always A-fib.

Maybe she wasn't confident in her assessment, leading to her hesitancy in contacting the doctor. Or, while she was reportedly 'concerned,' perhaps she doesn't fully understand the risks of uncontrolled A-fib. Just a thought.

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

ID2 — Thu, 14 Sep 2023 09:21:57 GMT

OP,

You called the Mayo Clinic?? Seriously? Me thinks this is none of your business. Maybe take a step back and let her take care of her parents. They are HER parents.

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

mimomof4 — Thu, 14 Sep 2023 10:30:24 GMT

Caregiving is difficult and you are lucky that your mother allowed you - YES Allowed you to help her. That isn't always the case. It sounds as if your friend isn't the caregiver but JUST A DAUGHTER. Sadly that is a big difference. I wouldn't say is is a bad caregiver, she simply isn't the caregiver at this point and also may not be on the HIPPA documation to receive any of the medical information. As she is not experienced in these matters maybe you could provide her some gentle guidance. Is she going to any Dr appointments or are the parents going by themselves. If she isn't going then she can only go by what the parents tell her, even though they may be hiding info.

My mother in law also kepts falls and getting lost from us. Or at least she tried. We could tell when she got lost and when bruises were present she made up plausbile stories. As her children we could NOT force her to stop driving or living on her own. We couldn't force her to have one of her kids with her at a Dr appointment (we tried and she would reschedule the appointment at the last minute to a time she knew someone wouldn't be with her). She was smart and knew what she was trying to hide from us. It was only after a fall as a result of the COVID booster (YES it was the cause and happened after both boosters she received). that we were able to get an official dementia diagnosis. Even then it took some trickery to get her to live with family members. Sadly a system set up to prevent elder abuse actually makes helping our elderly relatives very difficult. I have heard more than one doctor say unfortunately the relative has to hit rock bottom and have an extremely bad situation before the medical system can step in.

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

chrystaltree — Thu, 14 Sep 2023 12:14:03 GMT

First l, STOP comparing your situation and what you did for your parents to your friend's situation. She's a different person and she isn't going to meet what you consider to be the standard for parental care. I have Afib and I'm pretty sure the man's cardiologist told him what they tell all of us. Go the emergency room pronto if you think you are having an Afib episode. Meaning if your heart rate is over 100 and this has gone on for 24 hours. That's probably not the case with your friend's father which is why they reached out to the cardiologist via the portal. If you present to your friend they way you present to us; self centered and preachy, it's likely she isn't telling your what's really happening. It's likely, the cardiologist did respond but she isn't going to tell you the details. Step out of the situation. You are too absorbed in something that has absolutely nothing to do with you.

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

CalminHeart — Thu, 14 Sep 2023 12:18:01 GMT

Knowing what I know, I would insist the dad go to ER right now.

I had a cryo-ablation because my a-fib was bad and shocking my heart back in rhythm was happening too often.

People are often in denial when parents show signs of dementia or illnesses that can lead to death. It's natural because facing the loss of a parent is tough.

The elderly do not want to give up their independence and sometimes fail to see their own limitations. My dad is almost 92 and fought losing any bit of independence so I've been through it.

I understand why now that I'm considered elderly. See? I can't even say I'm elderly. I told my kids to ignore my arguments and just move me to assisted living when they see it's no longer safe for me to be at home.

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

chrystaltree — Thu, 14 Sep 2023 12:19:34 GMT

@GingerHead wrote:
My understanding is that afib is a chronic condition and not necessarily considered an emergency so I wouldn't jump to conclusions that your friend isn't being a good caregiver.

It's nice that you're looking out for them though...

Exactly true. If you have AFib, as I do, you know when to go to the ER and when to call your doctor.

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

LindaSal — Thu, 14 Sep 2023 12:25:41 GMT

@FancyPhillyshopper My thoughts exactly!

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

chrystaltree — Thu, 14 Sep 2023 12:30:46 GMT

@BlueFinch wrote:
I'm wondering how she diagnosed her dad 'going into A-fib, unless she has some type of cardiac monitor, or this has been an intermittent, recurring issue. An irregular heartbeat isn't always A-fib.

Maybe she wasn't confident in her assessment, leading to her hesitancy in contacting the doctor. Or, while she was reportedly 'concerned,' perhaps she doesn't fully understand the risks of uncontrolled A-fib. Just a thought.

There are many mobile heart monitors for home use. I use the Kardia Mobile device. Cost around $100. You can also use your Apple smartwatch and other smart watches to monitor heart rate. Or you can go old school and check your heart rate via your pulse. My doctor taught me how to do it this summer. Put your fingers on your wrist until you feel your pulse beat. Count the beats for 15 seconds. Multiply times 4 and that's your heart rate.