Eldercare: A Day in the Life
Prolog -- How we got here
I don't pretend to be an expert in eldercare. But I'm elected to do it for two weeks for my own aging parents, so that my sister (who does it 48 weeks out of the year) can have a break. I'm taking over for my other sister, who completed her two weeks Wednesday. I've done it before but each time is different.
Mom has been a semi invalid for almost five years now, since she fell off a van in early 2004. For you or me that would have been a sore back for a week but mom was an osteoporosis time bomb just ticking away. That fall detonated a chain reaction and suddenly a lot of issues came to the fore. Dad was the healthier of the two until about a year ago when he suffered a major stroke which left him weak and uncoordinated on the right side. Now they both reside in specially remodelled quarters at my sisters. They pay rent to help with her mortgage (since a lot of the remodelling was custom done just for them) and they pay her a small stipend to offset the fact that all she can handle (other than the care and feeding of them) is a poorly paid part time job.
The days are quiet and tedious here. The time seems long, and yet there is never enough time. I don't pretend to offer any profound philosophical musings on this subject, or to have a solution. I will just tell you what our day is like. At one time or another, many of us will have to care for an aging relative.
5:30 AM: The alarm goes off. My day starts early. If I want to get any outdoor exercise at this time of year early morning or after dark are the only times to do it in sweltering eastern Kansas July. I drink some water, throw on some clothes, lay out the table for Mom and Dad's breakfast at 7:00. I run to the cemetery and back. It takes about 40 minutes. Already I can tell it's going to be a hot day. Running in this humidity is brutal even at this time of day. Maybe tomorrow I will go out even earlier.
6:30 AM: Arrive at the house thoroughly sweaty. Set up breakfast. Breakfast is even simpler than before. Cold cereal, milk, and orange juice and water for dad, oatmeal or yogurt and oranges, ripe peeled pear slices and water for mom. Plus their meds. They have to have everything on a separate plate. Feed and water the cats then sit down briefly to check my email.
7:00 AM: Mom pokes her head through the big double doors at seven sharp. Dad has to be persuaded, but not too hard. Mom is adept at using cutlery. Dad lost a lot of coordination with the stroke. He fumbles and spills a lot and seems to have to think a lot about which tool to use and which hand to use it with.
8:00 AM: Empty the dishwasher. After clearing off breakfast, it's the morning walk. I have to make sure everybody has water, sunglasses, etc. I have to tighten Mom's shoes for her. I have to open the big front door for each of them, help them grasp the railing, carry the walkers down the stairs and have them ready at the bottom with the brakes on. I hold Dad's hand as he goes down the stairs. Mom can go down by herself. I get Dad down first. His route is go to the corner, cross the street, (because the sidewalk is smoother on the other side) walks by about two houses, then turns around and comes back. Mom goes a lot further, and a lot faster (relatively) OK, Dad's all done. Get him back up the stairs, back in the house and settled in his recliner for the morning. Run and catch up with Mom, who has made about a half a block's worth of progress. Mom's route is much more adventurous--she goes beside the back of the church, and two and one half long blocks along the edge of the city park and back. As I catch up she reminds me for the umpteenth time that Dad has a dental appointment today. It takes until 9:00 for mom to wrap up her walk. She farts every step. It's just gas. By the end of it she's exhausted and needs to go to the bathroom. "Oh I'll bet Dad's in the bathroom," she remarks. "He always seems to go in there just at the end of my walk." Of course the other bathroom in the house is up a steep flight of stairs. She'll wait. Dad emerges. Mom does her turn. Thank God we're not to the point where they need help with that. But it will come.
9:30 AM: Mom is resting on her couch. I set up a cushion for her to elevate her swollen left foot. It seems to be working. The swelling is down. Within minutes she is snoozing, snoring loudly. Dad has inserted a DVD in his ancient Macintosh. After I help him close the window that was covering up the DVD play window, he is now happily watching "The Nun's Story" with Audrey Hepburn. I got it for him from the public library yesterday because I remember he always had a crush on Audrey Hepburn.
10:00 AM: Make up their beds. They have recently replaced the old bed with shiny new hospital beds. The railing helps keep dad from slipping out of bed, and the head can be elevated. Now mop their bathroom, put down fresh wee-wee catching rags around the base of the toilet (dad has abysmal aim these days). My sister and I decided that her house IS NOT going to smell like pee. Sweep the kitchen.
10:30 AM: I can tend to myself, shower, dress in something other than running clothes, maybe read a little, finish checking my email.
11:00 AM: We are out of Romaine Lettuce, Mom needs more stool softeners, and adult diapers. I make a quick run to the store, letting Dad know, and making sure the cordless phone is within easy reach of mom. Can't forget my cell phone!
11:30 AM: Get the lunch prep done, and take dad to the dentist. Warned mom that lunch would probably be late. Can't find Mom & Dad's checkbook or credit card. Knowing him he probably hid them. Or maybe he just can't remember where they are. He has been to this dentist before, though so they'll probably just bill us and my sister (who has power of attorney,) can deal with it when she gets back. Dad prefers to sit in the back seat because it's easier to get into. Can't find the dang dentist. Dad keeps telling me I need to make a left turn. He was saying that when I was going the other way too. I realize he has no clue. Have to call for directions. Ahh there it is. Dad is getting antsy. He thought he remembered where it was.
12:00 PM: Now, we wait. Dang I should have brought something to read. I watch a little bucktoothed girl with massive dreadlocks playing with the toys. It beats reading any of the drecky magazines they have. Here comes the little girl's dreadlocked mama out from the dentist chair. Maybe we will be next.
12:30 PM: Finally they see Dad. Does he want to have a crown or a patch? The patch will be kind of brittle. On the other hand crowns cost a lot, and dental is not covered by insurance. Dad favors the patch because they can get it done all in one sitting. And of course there's the thing that nobody wants to say or hear said, "How long does it need to last anyway?" I go for the patch, because my checking account won't cover a crown, just in case they want cash on the barrelhead. I guess if it breaks again we'll spring for the crown.
1:00 PM: I get dad home and fix their lunch. For Mom, it's split pea soup, apples peeled and thin sliced, her noonday meds, water, and two slices of hemp bread with Smart Balance. Dad is trying to lose a little weight so he won't be quite so heavy for my sister to shlep around. Only half a turkey sandwitch and half an orange, peeled and de stringified. It seems like his weight loss program has been successful. I will propose switching him back to a full sandwich if he wants.
2:00 PM: Time to restock their little med compartments. It's terribly tedious to do that because I would not want to make a mistake with their meds. One packet of pills is not labelled. By process of elimination and by looking at the compartment that's still full from last time I figure it out. Yea! we have enough of everything, and it looks like we're fully stocked for the next refill I will have to do too.
3:00 PM: This is the hottest part of the day. I got up early. Dad is back watching yet another movie and mom is settled on her couch with a crossword. I can take a nap, or tomorrow at this time I might go to the public library to get some more movies for Dad.
4:00 PM: Time to think about dinner. I start potato soup from the Moosewood low fat cookbook. Mom will have a boiled egg. Then I do yoga. Mom only interrupts once to remind me that the adult incontinence product pail is full.
5:30 PM: Assemble the dinner and phone a friend.
6:00 PM: Help Dad get seated at the table and put a towel over him as a bib. Mental note to self: Get him a plastic placemat so that when he spills he won't mess up the whole tablecloth. Mom has salad with little bits of cut up avocado and tomato, and her boiled egg, a steamed vegetable of some kind, the pills, and water. She's worried that the egg isn't fresh. I taste it. It tastes fine. Dad gets to eat whatever he wants for dinner as long as we don't allow him to salt it. He complains that the potato soup is too flat. I have to agree. I salt his soup no more than I salt my own. Dad also eats prunes for dessert. Mom reminds him to chew them.
7:00 PM: Yes it really does take them an hour to consume the liliputian portions I place before them. Dad slowly and awkwardly maneuvers each morsel to his mouth. Mom is much more adept getting food to mouth but chewing is the problem for her. Everything tastes dry to her and needs to be lubricated with either canola oil or Smart Balance. I feel I should keep them company while they eat because I know I won't have that much more time with them. My sister the primary care giver doesn't have time to do this. She is trying to have a life on top of taking care of them, where as when my other sister and I come, it is our life because we don't live here. I clear the dinner, sweep the floor and load up and fire off the dishwasher. I get Dad installed in his recliner. Mom gets to her couch. I adjust her elevation cushion.
7:30 PM: I can relax a little bit now; they won't need anything else until bedtime. So I can take a walk, maybe even go swimming in the local swimming pool, as long as I know there is someone they can call if something happens. I check with the neighbors. They're going to be home so I tell Mom to speed dial 4 if anything happens and I go for a swim.
9:00 PM: Dad is already in bed. I arrange Mom's elevation cushion and tuck her in. Now I can websurf or read for about an hour before I fall into bed, emotionally exhausted. It will be more of the same tomorrow.
From here, whence?
That's how it is with Mom and Dad. They do everything at a maddeningly slow pace and always seem to need something. You can't really talk to them. They are baffled by the simplest thing, and forgetful. They are not connected to the present at all. Once in a while Mom (usually) will remember a story from the past, like it happened just last week. Sometimes I also remember the story, sometimes I don't, and sometimes it happened before I was born.
I can't resent these silly helpless old people. Although they bear no likeness at all to the competent strong loving parents who reared me, they still are those people. I just regret that they were too worried about hanging onto their money to enjoy any of it while they still could have. And now they can't. This year both require a lot more help, especially Dad. They won't get better. They will just sink further into helplessness until my sister just can't do it any more.
My house isn't suitable for keeping them. My brothers can't do it -- one isn't doing so well himself, and the other, although his wife comes by with flowers from time to time, could not do it. They have young children. My other sister is a teacher -- no way could she do the 24/7 care they will need. At that point, we'll have to do "long term care." We've seen those places. They all smell like pee, and the residents spend most of their time sitting around in soaked depends waiting for someone to help them. And they cost 4x what my parents are paying my sister. They are actually pretty spoiled by having custom food and quiet private accommodations. They can't get any medicare for long term care until they have spent every last dime of their money. They keep talking about doing a trust, but it should have been done five years ago.
My only observation is that provisions made for long term care in this country are heartless and wholly inadequate, and outrageously expensive, and that the whole system is badly broken. These sweet innocent little old people, who believed in saving their nest egg, are the ones paying the price.