Posted on March 28, 2011 by

Imperfect Caregiving and Perfect Storms

My first personal experience with the potentially devastating consequences of Alzheimer’s disease to a person’s safety was the time my grandmother forgot how to take a bath.

Though her day to day orientation was sometimes off, sometimes on, Granny G. continued to enjoy and carry out her own ADLs, so nothing seemed amiss when, during one of her frequent visits to my parents’ home, she prepared to take her early evening bath.

Some minutes later, alerted by screams from the bathroom, my mother pulled Granny G. out of a tub full of much-too-hot water. She’d “drawn her bath,” as she’d done for 80+ years, but–perhaps for the first time–forgot to check the temperature before climbing in.

Granny G.’s skin recovered, after a hospital stay. But the set-back caused by immobilization and recuperation, to a mind already faltering, was more than she could bounce back from. She returned to her retirement complex, but to the nursing wing rather than to her assisted-living apartment, where she declined mentally and physically, and died several months later.

Now my mom and my online support group full of spouses who are there, or have been there, help me think ahead. Imperfectly, because these “perfect storms” are often impossible to anticipate.

A couple of days ago I helped Jeff get ready for a shower. The typical procedure is as follows: I grab his various items of clothing as they drop, shoot them overhand into the hamper in the closet, then start the shower water. I have to wait for the hot water to work its way up from the basement while checking that it’s not overly enthusiastic, temperature-wise, once it gets upstairs.

This time, just after I’d heaved the last dropped garment, the phone rang. It was Mom, and to answer her question I needed to trot down to the kitchen to check the calendar. As I did so, I heard a noise I hadn’t counted on–shower water running. I hustled back upstairs and finished my phone business with one arm in the running shower water as I adjusted the temperature for Jeff.

That time I was lucky. A twenty year old memory served to fire a warning flare into my cranium, and I got there to turn down the heat a notch. But as every AD caregiver knows, the task of foreseeing possibilities which you’ve never imagined is an impossible one.

Several weeks earlier, I had sent Jeff on an errand with his brother without saying “he can’t see in the dark” and “always open the car door for him.” Jeff had changed. Brother was not up-to-date. I dropped a ball. Jeff came back with a bleeding gash above his eyebrow where–you guessed it–he’d opened the truck door into his head.

All Alzheimer’s disease damages perception, but the visual variant plays special havoc with spatial orientation. One day last week, in the course of five minutes, Jeff landed on his knees on the front porch after stumbling over the two steps up, then fell over the dog (who was positioned in classic dog-like fashion in the middle of the entry hall,) ending up on the living room floor. There’s a couch in there which would be a nasty solid to connect with during an unexpected descent, and luckily Jeff missed it.

I tumble this stuff around in my head daily. Is it still safe for him to sleep upstairs or should I retrofit a spare room downstairs? And if so, how will I explain it to a guy who thinks there’s nothing wrong with him? What’s the right balance between hanging on too smotheringly tightly at the grocery store and risking him taking off after the wrong blondish-gray head in the parking garage? If I knew the answer, it would only be the answer this week. What about next week?

All we can do is reduce risk by trying to stay one step ahead. And, when something slips through the cracks, share our painfully-gained insight with others.

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  • JVoyageur said:

    "Being a primary caregiver is really difficult when you involve another person in the care routine. There are a million little details to tell them. And the care receiver may not respond well to the new person because it's not you, not the ...usual relationship and how dare someone else tell them what to do - or they are just confused. This is where more burden and guilt come into play. I felt bad for the person subbing for me and for my mom for a while. This disease shifts and morphs constantly.".

  • Emily Clement said:

    "Suzie—I've been away or would have responded sooner! Yes, you should reach out more. Check the forum page here, and visit for much online support. This will help a lot and those who've been there/are there are ready to share what they've learned.".

  • suzie green-dover said:

    "Emily! I was glad to read your blog! my husband was diagnosed in jan.2011, he is 60 years old and I am 54 years old! To my amazement this condition was confirmed , I cried for one day without him knowing, picked myself up and haven't cried since...Although fear is creeping upon me now...I realized that day I loved him more than the day I married him but I can also see I must with all I have hold onto that.. But how? This is the first outreach I have made and possibly I should search for more. It began about 5 years ago, I began to see signs--leaving the water on an flooding out bedroom, turning on the bbq at 7am and the city of mesa driver pounding on our door at 9:30 am to see what we were burning out back, leaving the car running in the driveway ect ect ect...I don't quite understand it all yet, but why when something happens, it always seems to be "my fault"? is this part of it? Even writing this I feel a sense of calm come over me, maybe I should blog about this experience? Not sure where to go next but thankyou for letting me reply!!!".

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