Don’t be afraid to upset the applecart: Day 4 of 30 in Family Caregiver Series

30-day Family Caregiver Advocacy Series

3 smart ways to be a voice for your loved one (Day 3-5)

Day 4 of 30: Don’t be afraid to upset the applecart

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 We are in day 4 of our 30-day family caregiver series on family advocacy.  In the spirit of giving support and advice for caregivers, by the end of this series, you will have the tools, checklists, and information needed to effective serve as a loved one’s advocate.  We kicked off this series with a top 10 lists of what is means to be an effective advocate. (Day 1) then, I gave you 3 reasons why advocacy is a big deal (Day 2).  Then, I shared the ultimate guide to staying organized; (Day 3). Today, we I am showing you ways to be an advocate and not upset the applecart doing it.

If you are an advocate or know someone who is an advocate, this is for you. If you anticipate you will make health care decisions for a loved one, this is also for you. If you would like to avoid the care giving mistakes I made, this is definitely for you. Lastly, this is for you if you think you may need care one day.

This series includes the following 7 parts:

Part 1:  What it means to be a family advocate.

  • I’m a family advocate, now what? (Day 1)
  • 3 reasons why family advocacy is a BIG deal (Day 2)

 Part 2:  3 smart ways to be a voice for loved ones  (Day 3-5)

  • The ultimate guide to staying organized (Day 3)
  •  Don’t be afraid to upset the applecart (Day 4)
  •  4 things your loved one’s life depends on

Part 3:  The ultimate rollercoaster (Day 6 & 7)

Part 4:  The 3 C’s that make all the difference (Day 8-10)

Part 5: The surprising truth about who needs an advocate (Day 11-13)

Part 6:  5 ways you must keep your loved ones safe (Day 14-18)

Part 7:  What? I have how much time to decide where they go? (Day 19 – 30)

 

Day 4: Don’t be afraid to upset the applecart

 

We have a responsibility to our family to be a voice when our loved ones need it most; when they are unable to do so themselves. As my dad’s caregiver and advocate, I proactively reached out to doctors, case managers, and his employer to ensure he received excellent care and everything was handled appropriately. This also meant staying with my dad at the hospital to the extent possible. Being their voice, eyes, and ears is the best way to get full information, minimize concern, and ensure consistency of care. Particularly with brain injury, getting firsthand information was critical. The biggest thing to remember when you or a loved one is in the hospital is start working with the medical team towards discharge planning. Tweet this. Some people think discharge planning happens at discharge. Not true. It really should happen upon admission. I realize the anticipated discharge date may be unknown but if you go in with this mindset, you can start asking questions. Hospitals typically have an idea of discharge planning sooner than we think.

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One thing that surprised me but probably shouldn’t have is how quickly hospitals turn patients around. I’m sure this isn’t always the case. Nevertheless, you must be diligent and proactively plan for discharge. Tweet this! The medical team may welcome your questions or they may be annoyed. I’ve experienced both sides of the spectrum. It only matters what is in the best interest of your loved one.

 

Some of these questions you should ask prior to hospital stays (assuming you have time or a choice) and others should be asked during stays. These questions include:

a.  What is the diagnosis? What are the short and long-term outlook and what treatments are recommended?

b.   Are symptoms normal for the condition?

c.   Are there any underlying concerns?

d.   Will   new   medications be required   or   existing   ones changed? If so, are there interactions with other medications? What side effects might there be?

e.  What are the pros and cons of treatment options, as applicable?

f.   What tests are being ordered and what will results show us?

g.  If tests involve an invasive procedure, are there any alternatives and what are the pros and cons of these options?

h.  Will rehabilitation or home health care of any kind be required? If so, what time-frame can I expect before decisions are needed? Do they have a list of preferred providers and/or facilities?  Who will help coordinate needed items, therapy, supplies, and equipment?  Is there a Case Manager in charge of this case?  Note that Case Managers and/or Social Workers are usually assigned in cases where post hospital care is required. Insist on meeting with them and getting daily updates. Attach yourself to their hip!  I did this and learned ssssssooooooooo much about the key players, how decisions are made, the role insurance plays, how progress is measured, and more.

i.    Before discharge, what outpatient care, prescriptions and follow up is required? When was the last time medications were given? Get specific instructions in writing.

j.    When did the doctor(s) graduate from medical school and what subsequent training have they received? Do they serve on any boards, associations, or have research experience in their specialty? Do any treating doctors or surgeons have any disciplinary actions on file with the state? Note that you can research this prior to any appointment or surgery (if you have time to plan in advance).

k.   For   surgeries, how   many   surgeries   has   the   person performed? Will anyone else be operating? If so, who and why? When will you meet with the anesthesiologist? You’ll want to ensure they know the patients’ medical history. In my vast experience, Anesthesiologists are pretty darn good at knowing the patients’ history and do an outstanding job. I started asking the question  “will anyone else be operating?” after I learned doctors we weren’t aware were going to be in the room, much less operating, were indeed operating. I want to know these things. I know hospitals have a duty to prepare those coming up behind them in their field. I believe we have a right to know who is actually operating on our loved ones.

l.   What symptoms should I watch for after surgery?

m. How long should recovery take and what does ‘recovery’ mean?

n.  Are there any recommended resources available on the condition?

o.   How are doctors compensated? Specifically, do they earn bonuses? If so, what are bonus-qualifying factors?

p.   How is pain management handled? Does patient need to ask for it, will staff ask for patient pain levels, or is medication automatically administered?

q.   How is discharge date determined and who is involved in the decision?

r.    If necessary, who makes decisions about using restraints?

There are SO many more questions and considerations and this is a good place to start when you have hospitalized loved ones or anticipate hospitalization soon. I called this post don’t be afraid to upset the applecart because some people may think that the medical staff will proactively share this information and some people may think they are bothering the doctors and nurses with these questions. The truth is some staff do proactively share this information and others don’t. Some medical professionals are patient and compassionate and will answer all of your questions as if you are the only person in the world that matters and some may get really annoyed with the hint of a question. Take the bull by the horns. This is your life or the life of your loved one we’re talking about. Be proactive. Ask the questions. Demand the answers. Above all, be patient, understanding, kind, respectful and thankful for all medical professionals involved in your loved one’s care. Between us all, we are a fabulous team! Tweet this!

Here’s to lots and lots of questions!apples_TandyElisala

 

Next Up: 4 things their life depends on

 

Your Turn:  If you’ve been a family caregiver, are there things you asked that aren’t on this list? Are there questions you wish you had asked?  What do you think is the most challenging aspect of being a caregiver? Please comment below!!

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Tandy Elisala

Family Caregiver Coach, Cancer Empowerment Advocate and Chief Inspiration Officer at Center for Inspiring Greatness | Empowered Family Caregiver
Tandy Elisala is passionate about helping family caregivers go from being overwhelmed and stressed to empowered and calm. Tandy went through cancer four times and learned how to heal using conventional, complementary, and alternative therapy. Tandy left her corporate career to take care of both parents simultaneously while raising three kids as a single mom. She took care of both parents for 2 1/2 years until their respective deaths. Tandy now teaches what she learned on her journey. Tandy is a family caregiver coach, a multiple best-selling author, inspirational speaker and mom to three adult kids, one angel dog and one diva cat.

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5 replies
  1. Shirley Wood
    Shirley Wood says:

    I lost my mother March 16 of last year. She lived with us 4 years prior to her death. The last year of her life was her third round with breast cancer. I was her primary care giver. I would write my questions down each time we had a doctor visit so I would not forget. I found that sometimes it is helpful to provided the questions to the nurse before the doctor comes in so he/she will know this visit may take a little longer. I would advise also for caregivers not to be afraid to ask questions. People need to realize they don’t have to take the doctors advise if they feel it is not best for their loved one.

    Reply
    • Tandy Elisala
      Tandy Elisala says:

      Shirley, thanks for your comments. I’m sorry for your loss. It seems we both had similar paths with our mothers. Being a full-time caregiver can be so overwhelming that it’s easy to forget what questions you want to ask when you are with the various doctors. Sometimes, if the questions I had were more in depth or I wanted to share something ahead of time, I would fax or email the doctors office a day or two before appointments. I really like your idea of giving the information to the nurse ahead of time too. Great way to stay focused, organized and…remember!

      Reply

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