One key to longevity: advocacy

key

Checklists and how-to guides can answer a lot of caregivers’ questions. But when standard operating procedure is unacceptable … when pain is unscheduled … when insurance representatives give you the runaround … advocacy can be key.

If you’ve ever watched someone slowly, painstakingly load an old person into a vehicle or guide them into a building, it probably looked like hard work.

It’s true — caregiving takes strength, planning and the patience of a saint. But when it comes to helping the elderly, they’re only half the battle.

Today a reader told me her 88-year-old mother just moved in with her family. I wish I could share a magic formula to her mother’s longevity, but the best advice I can offer is this: Caregiving success requires advocacy, and you never know what form it will take:

Know which questions to ask
When Grandma moved on to rehab after back-to-back hospital stays, the center immediately switched her to another antibiotic, one the hospital’s doctors previously used to treat her life-threatening case of C diff. It didn’t work the second time either, and she got worse instead of better. When I asked why they’d made the switch, they told me the second drug was cheaper. I insisted someone contact the previous doctor for context, and by the next day she was back on the original medication. I’m not exaggerating when I say the switch may have saved her life.

Go higher on the food chain
During another rehab stay I visited Grandma and found her moaning in pain. The nurses’ aides ignored her calls for help, and who could blame them? Overworked and underpaid, their entire shift could comprise running from one emergency to another if they let it. For 20 minutes I comforted her while we waited for an aide to come.

Eventually I realized nobody was coming until their scheduled rounds. So I looked beyond the aides. When I finally found the shift nurse and explained the situation, she assured me someone would be there soon. I politely but firmly asked if they could come now. Irritated, she grabbed the closest person and told them to go take a look. It turned out Grandma’s catheter was blocked, which meant her bladder was painfully distended. The aide said it was good he came when he did. I agreed.

Don’t take no for an answer
I’ve alluded to my efforts to get details on Grandma’s long-term care policy. Two months into the process, I still don’t know exactly what coverage she has. The New York Times recently reported on the obstacles to cashing in on these policies, but they failed to mention the human factor. Policies don’t send outdated paperwork or transfer you to the wrong department or tell you they understand your frustration when they clearly don’t — people do. It’s very hard to make that ninth call when the last eight have netted little gain. But the alternative is to quit asking questions, and that’s akin to giving up.

I’m not a completely altruistic advocate. Of course I want Grandma to have the best care possible. But guilt and fear drive me too. When Grandma is gone and I look back on this time, I want to tell myself I did everything I could for her and used her resources wisely. If I can, I’ll consider this chapter of my life and hers a success.

This post was featured on Freshly Pressed on 7/24/13.

Image credit: jules_kitano / 123RF Stock Photo

Advertisements

59 thoughts on “One key to longevity: advocacy

  1. Now and then when my mother has been wheeled away for a lab test or a procedure at the pain clinic, I feel guilty that I am relieved someone is taking care of her and I can just go and wait till she is done. What I have found is that she sometimes becomes so stressed and frightened that she imagines crazy things are being done to her and asks me later, “Did you hear me yelling for you?” Time to double the guilt. I guess I have to be her advocate even when someone else is willing to take over.

    • No, do not feel guilty! You need breaks.

      What I was trying to say is that you don’t always have to play by the rules. Don’t be afraid to speak up if you know they’re doing something wrong — and that happens often at least in my situation. Doctors do not know everything. And nobody is going to care about your mom as much as you do. That’s all. 🙂

  2. Congrats on getting freshly pressed! I saw it come up and I was like hey, I know her! Great post, such a good point. It’s not enough to say “I’m sure they know best/are doing there best” you have to do research and ask questions and advocate, it sounds like you have saved her several times already!

  3. I’ve had my fair share of giving care to my grandma, and it was very hard. And it’s true that we should speak our mind when something is not right in the caregiving process because its our family who should fight for what’s right.

    • I don’t have an alpha personality. So at first it was really hard to speak up and question authority. But it’s a piece of cake now, because the alternative is to accept the status quo. And who knows where that will lead … Chaos and mayhem! Dogs and cats living together! Seriously, you have to look out for those you love, and Grandma was always there for me. Thanks for your comment.

  4. My mom approaches all health care this way. Listen to the doctors but use your own brain, and even your gut instincts. She has taught me to do my own research, ask the right questions, and keep pushing for what you need! Doctors are only humans, and humans make mistakes and are often affected by issues of money, time, you name it.

    • Your mother is a wise woman! There are plenty of good doctors out there, but our health care system is fundamentally broken and poorly equipped to deal with the influx of seniors who already need it or will soon. You have to be proactive; it’s as simple as that. I know a lot of people can’t be near their parents or grandparents and they must worry — lucky me Grandma is only 13 steps away. 🙂 I just hope someone who cares is around when my fate is in the hands of others!

    • Thanks for your comment. It reminds me of Cate Blanchett in The Curious Case of Benjamin Button when she said “Sugar, sooner or later we all end up in diapers.” I admitted I am not 100% altruistic. Maybe barely more than half! But if I just shrug off something I know is wrong care-wise, I won’t be able to look back with a clear conscience. If Grandma died today, I can honestly say I could.

  5. It’s not easy to be an advocate because you don’t always know what to ask. I can tell that you really care– keep it up!! As a nurse, I’d much prefer an active family member who seeks out answers than one who doesn’t care.

    • Thank you for the information about Warfarin — and for agreeing that it’s OK for family to be active rather than passive. As far as the Warfarin goes, I know the correlation I see is completely subjective. When you do A/B testing in marketing, you only change one factor at a time, and there are obviously multiple maladies in Grandma’s case. She does suffer from atrial fibrilation, but she has since the 90s at least. Why medicate for it now? I guess if it prevents stroke it’s a good thing.

      • Warfarin definitely helps to prevent stroke. When the heart ‘a-fib’s’, it means it is not making a normal ‘lub-dub’ sound. It means it’s making a ‘lub-lub-lub-dub’ sound. This causes the blood to not flow smoothly through the heart and thereby causes some of the blood to get caught near the heart valves. That blood, when pooled for awhile, will create clots. If that clot exits the heart and enters into the body (such as the brain), it can cause stroke.

        There are other blood thinners out there though, such as Xarelto and Aspirin. Some MDs don’t like to prescribe them because they can monitor if they are giving too much or too little through blood tests (INR). Maybe you can ask to see if you can switch it to another medication and see if that affects your grandma in a different way.

        http://www.xarelto-us.com/

  6. Great advice; great topic! Aging..Somehow in this day & age its a topic that doesn’t get written on enough..I guess it just doesn’t have a sexy appeal..Weird thing IS though; its something we’ll all one day be. Senior citizens. And though my parents are very very active youngish 70 yr olds; one day I’m going to be their caregiver. So I appreciate the sound hands-on information. 2 thumbs UP

    • Thank you! I know it’s in the top 10 un-sexiest topics ever, so I’m thrilled with every single positive response. I think I’m on the leading edge of a new generation of caregivers who can appreciate me mixing some zombies and music into my yawn-worthy tales of medication and incontinence, yadda, yadda, yadda. Maybe even a Seinfeld reference or two.

  7. My husband became very ill from a twisted colon. During his hospital stay I felt it was necessary that I stay as many hours through his day just to advocate on his behalf. The hospital staff was understaffed, and therefore, unable to keep up with patient demands. A turning point came one day when he repeatedly rang for pain medication, alongside trying to get someone to check an alarm that would not stop. I went to the nurses station and found no one. I went again … And again. It took an hour and a half before I found an aide and asked immediately for the charge nurse. Once she was located I informed her of what we had been dealing with. She simply explained, “We are extremely busy.” To which I responded, “This hospital will not listen to any excuse should we take our time to make payment.” ….
    Later that evening we were visited by a hospital administrator, apologizing for the ordeal. She gave me her phone numbers, including her personal cellphone number. She said it had been a very busy day on the floor, but that was not acceptable and that she accepted the responsibility of not pulling staff from another floor. From that day forward the tone of my husbands hospital stay changed dramatically.
    The day my husband was dismissed I just happened to meet the charge nurse at the elevator. She thanked me for drawing attention to the understaffing.
    Sorry I got long winded. I simply want you to know I admire you for taking ‘the bull by the horns.’ And I do hope you remember to take good care of yourself so your reserves are their for the advocacy of your Grandma. Your love for her is beautifully reflected by your words.

    • I appreciate hearing your story. There are probably more of us than we realize who at some point have seen no other choice than to take matters into our own hands. I’m glad your husband recovered. And I’m relieved people know despite my sarcasm I love Grandma. She raised me, and she’s always been there for me. Quid pro quo. 🙂

  8. As a long-time caregiver for my mom, who passed away one year ago tomorrow, I so relate to everything you say here. Yes, I’ve had moments since her death that I feel guilt for not having been with her for every test or procedure, guilt for feeling grateful for the break while she was undergoing a procedure or a hospital stay, guilt that I did not get to the hospital during her last hospital stay to be with her when she passed, but I know in my heart I did everything I possibly could have to advocate for her and to care for her and can only say that if your loved one is in a care facility, as long as you are communicating daily with the staff with any and all concerns you have, your loved one will be treated much better. I saw so many elderly and sick folks whose family were not there daily, who did not advocate for their family member, and those poor souls did not get the care they deserved.

    Congrats on being Freshly Pressed!

    • I’m sorry for your loss. On one hand I cannot wait to be free of the burden of caring for Grandma, but I also know I will be very sad. In many ways I already lost her — what’s left is a scared old woman with multiple health problems and a penchant for peeing in a glorified bucket in her living room. But that’s another story. 🙂

      What resonates with me about your story is you know you did everything you could for her while she was here. I can be unreasonably impatient with Grandma, and I’ve taken over most of her responsibilities out of exasperation, not love. But I’ve been there for her every time she needed me, and I always will be. That’s more than my brother and sister can say.

  9. You have my respect for getting involved in your grandma’s treatment.
    I trust doctors, they have a ton of knowlegde. but as your story illustrates, they also have their limitations.
    If you would like to aid your grandmother on her journey to longevity, I would try to provide her with healthy, natural/unprocessed foods( study a bit on this subject if you have to)
    Considering that they have to heal people, hospitals have an unbelievable lack of healthy meals.

    • I agree with you — she should eat better. But Grandma is a stubborn old bird and everything I suggest food wise gets shot down. There are too many other battles to fight with her; she’s made it to 88 eating as she does so if she wants cookies and applesauce for dinner so be it.

  10. Pingback: One key to longevity: advocacy | Boomers Not Bloomers
  11. This sure rang a bell for me.

    My divorced mother has been bi-polar for decades, then had multiple cancers (she is still alive at 78) and, as her only child, I had to do a lot of advocating for her. I’m bossy and have covered health care as a journalist (and my first husband was an MD) so I have zero inhibitions about challenging authority at any level to get what’s needed. There is a tremendous amount of arrogance and insularity in the medical world, and you have to be willing and able to ask direct questions and do it repeatedly. The goal is not to be liked but get what you need.

    Good for you for being fierce and loyal!

      • Rock on.

        I have seen the implicit assumption that “we know best” when what they often know is what works most efficiently and cheaply. Very different from the patient’s POV sometimes.

        I once went down the hall to INSIST a nurse come at once to clean my mother who (I could tell, she could not speak, then, with a brain tumor) she had fouled herself and was sitting there helpless. For eff’s sake.

      • What you describe is exactly why I’m glad I can usually be around when Grandma is hospitalized or even goes to the doctor. They still try to tell her technical stuff (for example about lens slipping in recent cataract surgery) when it’s pretty obvious she has no idea what they’re talking about. I don’t know how people do it when they’re far away.

  12. Pingback: One key to longevity: advocacy | subodhsharma1988
  13. heart touching post.congrats on being freshly pressed.
    “I want to tell myself I did everything I could for her and used her resources wisely.” this line summed it all for me…truly said and felt. well written

  14. Great post!! Everyone needs an advocate when it comes to health care and hospitalization. I went down that road with my mother–it was daunting! Congratulations on being Freshly Pressed! 🙂

    • What were your sources for information when you were caring for your Mom? Or what would have liked to see? I’m curious to know where the gaps are. I’m not a professional obviously. But I’ve put at least 10,000 hours in, and that’s what Macklemore says you have to do to get good at something. Lol.

  15. I took care of my grandma for years. She raised me, therefore, felt the need to somewhat give back to her all she did for me throughout my growing up years. It was hard work, but the only regret I have is not being able to keep on doing it as I’m writing this. She died in 2009 and, with her, half my heart. Tell her you love her every single day and, if you can, surprise her with flowers every now and then (winks)

    Great post! Congratulations on a very well deserved “Freshly Pressed”. 😀

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s