Interview: One Caregiver’s Story, Part 1
In honor of National Family Caregivers Month, I am shining the spotlight on a family caregiver who I’ve gotten to know in the blogosphere, Lori Hoeck. Lori is a loyal reader of my blog and in her first comment here told me that she and her husband are family caregivers for her mother, age 79, who has lived with them for many years. Check out her mom’s high school photo! Lori has graciously agreed to answer my questions and share their caregiving journey with us.
Welcome, Lori! How and when did caregiving start for you?
After living with my husband and me for a few years as a very independent, much-traveling woman, my mother suffered a stroke in 2001 while visiting family. EMT’s transported her to the hospital where they gave her tPA, which dissolves stroke-causing blood clots. She suffered no physical deficits.
After she returned home with us, she had a Transient Ischemic Attack. Coming on the heels of the stroke, the TIA left her with a lot of mental deficits, including a major reduction in sequencing skills. Making change, remembering the order of things, and staying on task were abilities my Mom had that dropped radically after the TIA. Recovery was slow, but eventually she was able to drive a car short distances and be very independent, able to fix meals, and keep up with her own housekeeping. About two years ago, though, her short-term memory started to decline fairly quickly and she gave up driving. Presently she is taking the drug Aricept which seems to slow the decline.
What are some ways your life has changed since you became your mother’s caregiver?
The residual deficits in sequencing skills plus the short-term memory loss meant pots were left on the stove top too long, microwave time settings had an extra zero added, and perishable foods were left out of the refrigerator too long. We’ve gone through four microwaves, three coffee pots, and tossed out lots of food, some of which went in the trash after we got sick. Also:
- I’ve found the dishwasher with dish soap that has bubbled up and overflowed in the dishwasher, which then plays havoc with the water indicator so the heating coil starts cooking the bubbles.
- She’s tried to starch her clothes while ironing with a can of window cleaner.
- Our cats became sick after she cleaned the bathtub, but did not rinse it well enough, and the cats walked in the tub and then licked their paws.
Since these occurrences, I’ve locked up most of the household chemicals and cleaners, taken over all cooking and kitchen cleaning (not that this stops her from trying!), and had to take extra care to watch out for the health and well-being of our cats. Her physical health is great, but it’s unsafe for her to be alone for extended periods, such as overnight. I work out of our home as a freelance writer, so she is rarely alone for more than 3-4 hours.
What do you find is the most challenging aspect of caregiving?
- Knowing it will never get better, I will never have my mom back the way she was, and I can never talk with her the same ever again
- I must be the parental figure now in so many ways, but still provide as much dignity to the process as possible for her
- Having to be proactive, prevention minded, and as patient as the Biblical character Job as I handle her money, legal, and medical issues
- Trying to set boundaries, establish a routine, or figure out her state of mind, since it’s often impossible
- She regresses to words and emotions of childhood sometimes. It makes her very fragile emotionally, and yet she can be as stubborn as a teenager and equally insistent, often taking too many things personally
- Having family members think she is at a higher functioning level than she really is, so they see our precautions as either unnecessary or too controlling
- Her tendency to be forgetful of things – sometimes within seconds — and yet still fixate on things like housekeeping, the weather, and our extended family’s problems
The biggest challenge, however, is working with the combination of her personality and the memory deficits. My mom comes from a family culture where you endured silently any aches, pains, or misfortune. Hiding behind a mask was learned from an early age.
- I may find my mom crying, but she will try to stop and then clam up about it.
- I might point out an obvious fact, but she will deny it, laugh it off, or ignore it by going into her room and pouting for a short time.
- I will try to help her, but she refuses, brushing off my assistance with “Oh no, that’s fine. I can get it.”
Her state of mind, her masking skills, and her memory loss combine, and as a result the rules of interaction are always changing or don’t exist – as soon as one is set, it changes. For example, I’ve asked her if she wanted to go with me on errands in an hour or so (because she takes time to get ready), and she might say no. At that point, I may make new plans that don’t include her, but if I don’t leave right away, I may see her come out of her room all dressed up telling me, “OK, I’m ready to go.”
One day she wanted a fast-food burger, so I took her to a Wendy’s drive-thru, but for some reason the chicken sandwiches appealed to her and, despite my reminding her that she really wanted a burger, she got a chicken sandwich. I triple-checked with her that the chicken was what she really wanted. We drove a few miles to a scenic overlook and parked the car to eat and look at the view. I pulled out her wrapped up sandwich and handed it to her. She peeled back the paper, looked puzzled, and exclaimed in a totally surprised voice, “This is not a hamburger!”
If at anytime in these two incidences I had pointed out her change of mind, she would have become defensive, taken it personally, and withdrawn emotionally – until she forgot about it again. I wrote in my blog that it is often like living in a not-so-funny Saturday Night Live skit.
I think you’ll agree, Lori writes from her heart. Thank you for being so open and honest with us, Lori. She has graciously agreed to answer questions you have for her in the comment section below. So please don’t be shy.
You can read more of Lori’s captivating writing on her personal development blog at SpaceAgeSage.com. We will continue with Part 2 of my interview with Lori next week, so stay tuned!
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[…] Originally posted here: Interview: One Caregiver’s Story, Part 1 […]
Interesting interview and very inspiring. Thank you.
Hi Linda,
Thanks for taking this kind of leadership in eldercare education!
I must admit, it was tough for me to answer some of your thoughtful questions — because it’s so personal — but I hope this post and part two stir your readers to take time to read your 4-part Caregivers Communication Class and learn more about giving tender loving care to parents and seniors.
Hi Vered,
Thanks! Linda’s questions really coaxed a lot out of me.
My grandfather died of Alzheimer’s; it’s very difficult to watch someone you love deteriorating before your eyes. I’ve been reading a lot about how to keep your mind active even well into old age. There is something called the Nun Study where a groups of nuns have been studied for years. When they die their brains are dissected (almost all of them consented to allow this after their death); scientists have discovered that a lot of them had Alzheimer’s when they died, but they had not exhibited the signs of Alzheimer’s. Researchers think this is due to several factors including keeping mentally active, having strong social bonds with others, and a positive attitude toward life.
Hi Vered — You’re welcome and thank you for reading and commenting. Lori’s story is inspirational.
Hi Marelisa — Wow — I’ve never heard of this study, so I’ll have to research it. I’m sorry about your Grandfather — I feel your pain. Just got back from my Mom’s and some visits are just gut wrenching. Thanks for visiting TLeC and hope you’ll be back!
To SpaceAgeSage aka Lori — Thank you for taking time out to reply to my readers and, one more time, for allowing me to interview you!
Hi Linda and Lori. Thank you for sharing this. I read Lori’s blog regularly and agree that she writes from the heart. It is difficult to watch your elders age when you care about them so much. I went through that with my grandmother who passed away ages ago. That is a lovely picture of your mother.
Hi Marelisa,
Sorry to read about your grandfather. It’s an illness strips the heart bare.
Yes, I’ve heard of the Nun Study, but my mom refuses to do any of those things. She fears socializing outside the family because of extreme self doubts. She may be more fragile emotionally these days, but she’s also still amazingly strong-willed and stubborn about what she doesn’t want to do!
Hi Linda,
My pleasure! Thanks for the interview.
Hi Davina,
Thanks for reading my blog — and for making the wonderful comments you leave!
It sounds like your grandmother had lots of love from you before she passed away.
About the photo - Thanks — I always thought that my mom’s high cheekbones gave her classic look.
Hi Davina,
I think Lori’s mom looks like a movie star — she reminds me of Donna Reed from the TV show “Father Knows Best.” (I’m dating myself here!) Your grandmother was lucky to have you as her granddaughter — your love for her shines through your words.
What an amazing story of love you are sharing. I am so sorry to see anyone have to deal with this difficult part of life, but it sounds like you are doing a phenomenal job as both a caregiver and a daughter. And I have to agree-Mom definitely looks like a movie star in that picture! I will be sure to take a peak at http://www.spaceagesaga.com as well! Thanks for sharing such detailed information on the ups and downs of daily life!
Jill
Great post, Lori. And thanks, Linda, for inviting Lori to share her experiences. Both my parents are still healthy, but my brothers and I are starting to notice a deterioration in my mother’s memory, and her ability to retain information.
This comment is interesting: My mom comes from a family culture where you endured silently any aches, pains, or misfortune. My father definitely does the British stiff upper lip thing. He had a very bad fall in 2001 and shattered his hip. You can tell he is in chronic pain, but he refuses to use a cane to take the pressure off, or admit that he hurts in anyway. But it’s written all over his face and in his body language by the end of the day.
Hi Urban Panther,
Thanks, and I’m glad your parents are still healthy!
About the “stiff upper lip” mentality: I’m so trying to chuck it out of my life. I know I’m tough (EMT, former firefighter, 3rd degree black belt), but I’m starting to value graciousness and the ability to say, “Why, thank you!” to anyone who offers me a hand.
Hi Urban Panther,
It seems like you are well aware of your parents’ health, physically and mentally. That’s the first step — awarenss of what’s “normal” for them and then any changes that start to occur. They are lucky to have devoted children.
Welcome to TLeC, although I think you may have commented here before. I know I’ve visited your Lair, so maybe that’s what I’m thinking of. In any case, welcome!
Hi Jill,
Your comment was “lost” in my spam filter until this morning, hence the delay in my reply to your comment. Sorry.
Lori’s story is really something! Being a caregiver is a roller coaster ride for sure — whether you’re a caregiver for aging parents, for a contemporary with an illness, or for a child born prematurely. Caregiving comes in many shapes & sizes.
Welcome to the TLeC community!
Hi Jill,
Thanks for the kind comments. As Linda writes, it’s a roller coaster existence mentally and emotionally. My husband and I realized last night that we will have to start helping my mom with her before-bed routine, too. It’s always something!
[…] Two of my interview with Lori Hoeck titled “One Caregiver’s Story.” You can read Part One here. Share: These icons link to social bookmarking sites where readers can share and discover new […]
[…] One Caregiver’s Story, Part 2 November 24th, 2008 In Part One of my interview with Lori Hoeck, family caregiver for her mom, age 79, she candidly told us how her […]
[…] Fridays to keep us all laughing. I will be adding more interviews with family caregivers, like the one I did with Lori Hoeck a few months ago. (If you are currently a family caregiver and would like to be interviewed for […]