LAGNIAPPE (SOMETHING EXTRA!) FOR THE WOMEN’S EYE COMMUNITY
Jane Heller’s Follow-up Q&A: Tips for Caregivers

Jane Heller graciously agreed to answer the questions we did not get to during our TWE TelEvent: Tips for Caregivers: From Someone Who’s Been There. Here they are.

Q: Discharges happen so suddenly and often I’ve felt like my mother was not at all ready to go home. How do you get the doctors and nurses to listen to you because I know when she’s discharged too soon, we’ll be right back in the Emergency Room? —Anonymous

Jane Heller: The sad truth is that many hospitals are under pressure these days to discharge patients to free up rooms/beds. But if you truly feel that your mother is not getting adequate care while in the hospital or being shuttled out the door too quickly, speak up. No doubt there is one lead doctor on the case, and you should sit down with him/her and ask your questions about your mother’s health.

If he/she is too busy and on the run, you can ask, “When would be a good time to talk? May we have a consultation?” Most doctors will agree to that. Have your list of questions – no more than three or four – written down in advance so you don’t waste time, and ask them. If there are other questions, you should give those to the nurse and see if she can get answers. But don’t ask in a confrontational tone. Keep your emotions in check for your mother’s sake. Good luck and thanks for the question.

Q: How much do you need to know before taking on a caregiving role? —Pat

Jane Heller:  Knowledge is power, so while your role as caregiver will constantly evolve as a loved one’s condition changes over time, you should familiarize yourself with the medical condition of the person you’ll be caring for. Read everything you can about the condition. Learn about symptoms, medications, possible complications. And then go to the hospital or nursing home where you’ll be spending time, and get comfortable with the systems there.

I have a chapter in my book about navigating the emergency room and I learned a lot. If appropriate, I encourage you to read it. (I didn’t understand, for example, that every hospital ER has a triage system and what it entails.) Most of all, what you need to know is that caregiving is hard, demanding work, both emotionally and physically, and you need to take care of yourself while you’re doing it. And you need to remember that you won’t be alone; there are over 65 million of us out there with many, many support groups to help. Good luck and thanks for the question.

 ~ Did you miss the Replay? If so, click HERE ~

Q: How do you find good in-home caregivers and get them on-board quickly? I just learned they want to send my Dad home in 2 days and he needs 24-hr care for awhile! —Anonymous

Jane Heller: Every hospital (if that’s where your father is) has a social worker whose job it is to help you reach out to local home healthcare workers. So ask at the hospital and get references and then call them and see how you feel about their responses. Perhaps your father’s doctor’s office has suggestions as well.

Another idea is to speak to a nurse or nurse’s aide who’s been particularly helpful during your father’s stay. One of the caregivers I interviewed in my book said his wife bonded with a nurse’s aide at the hospital, so he asked this aide if she’d be willing to come to their house on a freelance basis and continue caring for his wife after she was discharged. The aide ended up staying for weeks and became so close to the family that she attended the daughter’s wedding. So my advice is ask, ask, ask. Good luck and thanks for the question.

Q: I am a part-time caregiver, but sometimes when I go off to work I feel I am abandoning the person I am caring for. Is this normal? —Tom

Jane Heller: Oh, Tom. What you’re feeling is so normal, believe me. I have a chapter in my book about the conflict most of us experience when we have to divide our time between our work and our caregiving. In my case, I felt torn because I needed to keep my daily writing schedule going in order to meet my deadline, but I also needed to be with my husband Michael when he was in the hospital.

What I learned is that we’ll burn out in a hurry if we let this sort of emotional conflict get the better of us. We simply can’t be in two places at once emotionally and if we try, we fail at both jobs, work as well as caregiving, because we’re not really present for either. So the trick is to compartmentalize. When you’re caregiving, be there 100%. And when you go to work, be there 100%. And remember that you’re not alone and your feelings are completely normal and go with the territory. Good luck and thanks for the question.

~ Would you like to write to Jane directly? Click HERE to contact her on her website. ~

Q: How can you get the relief from the constant caregiving when other family members either can’t or don’t help? —Anonymous

Jane Heller:  You must get relief, cooperative family members or not. If you go down, there won’t be anyone to do the caregiving, so your emotional and physical health are of major importance. Don’t think of taking days or weeks away if that’s not possible. Look at it in 20 minutes intervals. Is there someone who can look after your loved one for 20 minutes? A friend? A neighbor? A member of a support group? If so, grab those 20 minutes and get a bit of exercise, have a haircut, see a friend – something just for yourself.

If you absolutely can’t take 20 minutes away from the house or facility, then at least take them inside, in another room. Watch a movie. Read a book. Do some deep breathing. Soak in a hot tub. We all need “mental vacations,” as I call our little escapes. They help prevent caregiver burnout and I urge you to take one and soon. Good luck and thanks for the question.

Comment from a Listener (and Jane’s response below):

I am a cancer survivor. In 1998 and 48 years old, my father, 84 was diagnosed with prostate cancer and mother 77, with severe depression. A close family, my 3 brothers and I had never discussed with our parents their wishes regarding their health and well-being. As doctor and ER visits for both became more frequent, the relentless pressure and setbacks made it impossible for me to continue FT work.

Eventually I resigned the job I truly loved as Activities Director in a senior retirement community. Restoring my parents to good health became my number one priority. I would come to represent the ‘silver tsunami’, helping my daughter raise my grandson while simultaneously signing on as full time caregiver and patient advocate for my parents.

Listening to Jane speak so eloquently, the entire 14 years unfolded like a sad song; being thrust into the role, freaking out, keeping emotions in check. Laughter is a staple in our family and it became MY best medicine. If I was happy, mom and dad were happy. Yet I had my share of depression/anxiety/guilt and ER visits.

In time I came to recognize that knowledge IS power! In exam rooms/hospital settings with my parents, I learned doctor/nurse protocol and became my parent’s voice. Latinas are expected to care for their aging parents, sibling responsibility HA!, and my brothers lived in town but were instead, ‘armchair caregivers’ and nursing homes were out of the question. Exhausted from asking for help, I did it ALL; doctor visits, labs, ER, finances, groceries, cleaning, bathing, cooking, the list is endless and my journey long and arduous. Yet, I knew God had a plan and purpose for my life and I’m eternally grateful.

In 2012 my 58 year old brother passed away from undiagnosed Hep C. The week before he died, he apologized tirelessly thanking me through his tears, for caring for our parents, ’I should have helped you. We were supposed to grow old together sister’. It was heart-wrenching. We were at peace. My oldest brother 71 continues to live on Mars.

Our mother 92, passed away at home on Labor Day last year, a combination of congestive heart failure, chronic kidney disease and complications from a fractured hip. She too was entering stage 4 Alzheimer’s. One month after her death, I courageously and guilt-free, passed the caregiving reigns to my youngest brother, 53. ‘I cared for our mother until the end and I’m exhausted. It’s your turn to care for dad’.

With pause (he was well aware of the major changes lying ahead) he moved Pop in with him and his wife and made the renovations needed. Dad happily celebrated his 100th birthday last month! He remains in good health and is an avid ‘slow’ walker (with his walker) and enjoys chair exercises but refuses to give up his beef chorizo and flour tortillas! After 72 years of marriage he misses mom dearly yet loves living with his son, ‘I’m happy here and my son takes good care of me.’ Music to my ears! I support any decisions my brother makes regarding our father and agreed to continue taking him to doctor appointments and out for breakfast/lunch weekly.

Yesterday was 6 months since my rotator cuff surgery I’d been postponing for a year to care for my mother. I’m FINALLY completing my manuscript on the ‘office visit’ I started in 2007 with book release in August. My goal moving forward is to teach caregiver workshops on ‘sibling involvement’ from diagnosis onset and the sharing of responsibilities. The ‘women’ caring for parents for THIS Latina stops with my generation!!! I’ve compiled my own wishes on paper and my daughter is aware that she is solely responsible for her 16 year old son, not her mother, PERIOD! My only request, ‘Just place me in the home that’s laughing the loudest!’

Thank you, thank you, ‘The Women’s Eye’ for today teaching us to ‘always look for the silver lining in caregiving!’ Priceless information and dialogue coupled with Jane’s wit, I’m heading to my independent bookstore to purchase ‘Better Not Die or I’ll Kill You!’ Huggz to Jane, Stacey and C(S)beryl!

Jane Heller: First of all, I’m in awe of how much you’ve grown as a caregiver and what a journey you’ve taken! Bravo! You’ve taken on so much, and yet you’ve figured out how to move from the freak-out, the exhaustion, the guilt, all of it, to a place where your dad is doing well in your oldest brother’s care. And you’ve certainly come to appreciate the beauty of laughter and how it gets us through.

Thank you for sharing your remarkable story and for participating in The Women’s Eye’s TelEvent. It makes my day to know you related to my anecdotes and tips. Finding silver linings during difficult times isn’t easy, but it sure helps us keep our sanity. If you do buy my book (it’s available as an ebook too, if you’re a tablet user and your local store doesn’t stock the physical book), please write to my web site and let me know how you liked it. Take care.