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!