Fearless Caregiver Profile: Annie Achee

July 13, 2020

10:47 AM

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How did you become the caregiver for your loved one?

Physician/Husband diagnosed with a rare sarcoma in 2011

Has your relationship changed with the loved one that you are caring for? If so how?

No, no change

What is the hardest thing about being a caregiver and the most rewarding thing?

Staying on top of what they might need at any moment / anticipate needs and act quickly and effectively.

What advice would you give to other caregivers?

Know as much as you can about the disease as fast as you can to be a patient advocate in the hospital and in the clinic

In ten words or less, what has caregiving taught you?

Be an effective advocate, be compassionate, patient, always caring

Describe a situation where being a Fearless Caregiver helped you succeed?

Changing oncologists when the one assigned was not meeting our needs adequately.

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Comments (3)

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Take care of you

Dear Annie,
My husband was diagnosed with a sacral chordoma (sarcoma) in 1999. The first and second doctors we saw said he'd be dead in 12 months. We worked, like the team we had always been and found a third doctor in a different country. In the end he had seven surgeries and was in five different drug trials, but he lived 12 years and most of that with a good quality of life. He got to see our children grow up. We set up a business (that's still going and growing eight years after his death). For the first six years, he wouldn't talk to the surgeon. I was the middleman. My secretary, who later developed breast cancer, said she learned everything she needed to know to survive her own cancer by listening to me advocate for my husband. There are many things I could say to you, but the most useful experience I can share is, 1. just keep going 2. keep asking what the doctors would do if the patient was their spouse, son, in-law. Never settle for a comforting answer that doesn't address the issue at hand. Never give up. 3. Take care of yourself along the way. It took me at least six years after his death to be able to sleep through the night. It has taken me eight years to restore some kind of routine to my own life. I wish you strength to take care of you.

Maria Kacandes-Kamil more than 4 years ago

Parkinson's

My husband was diagnosed almost 30 years ago. The first few years he continued to work with the help of medication During that time we read and researched as much as we could. Eventually he stopped reading I could see the fear in his eyes. I asked questions at each Doctor visit. I went to every appointment with him. He managed too continue working for 10 years. He was able to continue with his hobbies and still felt very useful at home. I have watched him decline from a strong confidant man to a man unable to walk or care for any of his own needs. Our mornings start with me getting him out of bed and putting him in his chair. Then our routine starts we have our meals together we bath together we do everything together 24/7 The only time we are apart is when I go to the market or to my Doctors appt. He has not been able to leave the house for almost 3 years except by ambulance. He has home Doctors and therapy occasionally. He is losing his vision now but still insists he can drive his powerchair, but our walls and woodwork would disagree. I had to embrace the fact that he is still with me and eventually the house would recover but my sweet husband won't. Yes I have anxiety attacks I try to walk away when I need to and take a deep breath. My nights are difficult I have a bed next to his hospital bed. He wakes me every couple hours to ask if I'm sleeping. We get up watch the news for awhile then its back to bed. I get him in and out of bed sometimes as many as 20 times a day. I get him on and off the toilet at least 20 times a day sometimes just because his stomach growled. I change his cath daily and sometimes more if he pulls it off accidently. I use to clean when he napped but I realized I need my rest so when he naps I try to sleep also. We always say one day at a time and that's how we are taking it ONE DAY AT A TIME. Thanks for listening God Bless all my fellow caregivers out there

Judy more than 4 years ago

Caregiving with spouse who has Parkinson

You are an inspiration! My husband has Parkinson and becomes bilgerent. He weighs over 200 pounds and is over 6 feet tall. I'm 71 years old, 60 pounds lighter and have MS. He can't walk, talk, write, or smile. Our roles have been reversed and it is scary, overwhelming, and exhausting. He has more needs than I am equipped to give. He is much nicer to nurses than to me. It's difficult sometimes to not take it personally. What gets me through is prayer, music, and an incredible support group from the church friends I can no longer be with. I can't fathom doing this without knowing we are both God's children and that we have not been abandoned. I try to lay everything at the foot of the Cross and thank God for his blessings and for the ability to stream services over the internet. Dometimes i forget sn pick somethings back up.. My husband believes in God but is not a Christian so I am always reminding him that without my greatest supporters, God, Jesus and the Holy Spirit, he would be living a very different life and I ask him to thank them everyday for another day to grow closer to them. Thank you for reading. God bless you and your husband, and all who care about you both.

Dianne McGuire more than 3 years ago