In his chapter, we will explore the biggest health issues we encountered in caring for Peggy.

First, you have to pay attention. Does she seem too hot? Does she seem too cold? Is she congested?  It has been several years since she could have told us she had a sore throat or her head hurt or she thought she might have a fever.  You have to watch how she is behaving to get an idea of what might be wrong.

In some ways that is the easy part.  You can tell if she looks flush, sounds congested, etc.  But, the daily health issues actually take more work.  A couple of years ago we developed a spreadsheet and it is maintained daily. It includes information every day about how much and what she ate and drank, what medications she received, if she bathed, brushed hair and teeth, and exercised. How many times did she urinate?  Did she have a bowel movement, and, if so, was the movement normal, hard, loose?

The single biggest issue for Peggy has been constipation.  We spent the better part of two years working to get this under control.  There were doctor visits and emergency room visits.  Multiple fleet enemas were administered each week for months.  Various things were tried including fiber supplements, teas, and several prescriptions.  We learned that fiber supplements make matters worse if insufficient fluids are taken with them. In Peggy’s case, it was pretty much impossible to get her to drink enough for the fiber supplements to have the intended effect.  Without going into detail, almost every bowel movement for several months actually plugged the pipes. 

Finally, a new prescription, coupled with the recordkeeping, seems to be working. She has been in less distress and less pain for several months now.  I am not specifying the medication we are using because I don’t want to imply that it is the only thing that will work or that it is the best thing to use.  That is something to be decided for each patient in consultation with a doctor.  It took us several tries to get it right.  All I can really say is, recognize that there are options and keep working at it until you get it resolved.

It has been a couple of years since Peggy was able to feed herself. We generally cut up her food and feed her with a spoon.  Relative to eating, she has slid back to being a toddler, almost an infant. But she still eats solid food and normally drinks with a straw. Sometimes we have to work at keeping her awake while eating, don’t want to aspirate food.

She can’t get out of bed or walk by herself. She uses a walker to get her exercise and a wheelchair for long outings. We take her to the bathroom every few hours or when we notice a sign that she needs to go. These signs come in various forms, visible – rapid foot movement, auditory – intestines gurgle or moaning, or olfactory – this one is obvious. Adult undies, bed pads, gloves, and wipes are a staple in our home.

Some activities such as bathing and maneuvering stairs require two people. She normally gets bathed three times a week.  Fingernails and toenails must be groomed. Her ears have to be checked and cleaned.  Her teeth need to be brushed for her and floss “picks” are used to floss her teeth.  We walk her around the inside of the house in cold weather and try to get her outside whenever possible.  For St. Patrick’s day we took her out to dinner wearing a head band that says, “Kiss Me – I’m Irish”. Although not as obvious now with her beautiful silver hair, she did have red tint to her brown hair and lots of freckles – her Irish traits.

Next we'll discuss some of our thoughts about home care, institutional care, and support groups.