Japanese artist Taro Gomi is known for his famous picture book Everyone Poops; American author Justine Avery has a series of illustrated books about various body functions “below the belt”. Those books are basically kids’ stuff, but home caregivers have the reality of dealing with human biology every day.
The critical question for home caregivers, as a person’s dementia progresses: even if you changed diapers on your kids when they were babies, can you now handle both ends of the adult digestive tract?
The gut can magically transform foods into solids, liquids and gases that can be expelled in either direction, upper and lower; home caregivers learn how to deal with both the expected and unexpected transformations and gut expulsions.
“Enough pussy-footing around! ” might be what that cat above is expressing. It’s about toileting. It’s about keeping a person clean and comfortable. It’s about poop, constipation, manual disimpaction with removal of feces, incontinence, diarrhea, vomiting, drooling and sometimes dealing with toilet plumbing.
Of course, changes in diet and medication, or laxatives, can complicate matters. Sometimes an unplanned shower or an additional laundry run might be needed. Earlier this year, OldGuy posted some details on customizing disposable underwear. An earlier post gives a link to incontinence lingerie!
There seem to be more urinary incontinence products readily available, and the wetness / dryness issue seems more straightforward.
The other challenge is that the person who needs help will need more help over time, but unpredictably. So the home caregiver can try to establish routines, but will need to continually adapt. Developing a duty about personal hygiene will be important for the caregiver, too.
Many agency / professional caregivers, licensed in our state as “home care aides,” or as “certified nurse assistants,” can usually handle the tasks. OldGuy has watched different skill levels, and some agency folks won’t participate.
These care needs aren’t easily scheduled, like meal times or shower times. Most agencies can’t supply 24/7 staff anyway, which is hardly necessary, affordable, or cost-effective, so the tasks will fall to the home caregiver.
The non-profit Family Caregiver Alliance (not affiliated) has a series of videos on these kinds of nitty-gritty topics, called “Caregiver College,” on their resources webpage.
Perhaps the three most daunting tasks in middle to later stage home caregiving are dealing with human waste management, transferring a person who has lost mobility (i.e. moving them from bed to wheelchair, wheelchair to shower, etc) and dealing with behavioral / emotional issues.
Being a home caregiver is a conscious decision, of course. It may help to understand how responsible the caregiver has to be for all the details. But it’s not about sophistication, it’s about getting things done, with care and love.
In early stages, there were some anxious and embarrassing moments, especially around travel. [I will re-iterate that tiny airplane lavatories are a hassle, but what’s worse are several detestable US airports without companion bathrooms.]
There is always a constant assessment of how well things can get done by an OldGuy, or would the overall support be better if done by someone else, or somewhere else?
Yeah, sometimes it may all seem daunting, but guess what, lots of people, perhaps millions, do caregiving! For an OldGuy, maybe it’s just hubris, but the reward is getting things done in the most comfortable option for all involved, with all the personal touches at home, and when it just seems right.
One needs to understand one’s own limits, of course, and home caregiving isn’t right for everyone. So, as the Brits say, no matter what the decision:
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Taryn
Ron — thanks for these comments about the realities of caregiving for someone who is debilitated. It is hard work and hard to manage when also having to work for income (hence the need for paid family leave!). But it is true that the rewards in caring for someone you love at home and knowing you have their best care in the forefront of your mind can be a balm for all the unexpected challenges and hilarity that these situations entail.