This is the story of my long struggle to care for an elderly parent who would like nothing more than to lie down and die. Just so you know...
On Tuesday, I had to call the police and report my father for assaulting me. It was the hardest thing I’ve ever had to do, but it was for his own good and I had no other choice.
I’m a classic member of the sandwich generation. I have three grandkids, 2 of whom I have raised on and off (mostly on) since infancy. I am also the primary caregiver for my widowed father, who has a lifelong physical disability and suffers from Alzheimer’s and dementia. I have 2 sisters and 4 stepsisters (my dad married their mom in 1973), but none of them are really involved in his care, and some of the steps don’t even talk to him anymore. He’s been living with me and Dear Partner for the last three months because the assisted living facility could no longer provide the level of care he needs, and everyone agrees a nursing home is the absolute last resort. As you might guess, it hasn’t worked out so well.
In 1998, while I was still living in Las Vegas, my beloved Wicked Stepmother (our running joke, my stepmom and me) suffered a heart attack as Daddy was driving her to a doctor’s appointment. They revived her at the hospital, but she never regained consciousness and she died after a few weeks in a nursing home. He had retired a few years earlier from his position as an auditing director for a state agency, and she had become his whole life. He never got over her death, never really dealt with his grief. He created a shrine in his living room with a lighted and larger-than-life sized portrait of her, banked with flowers from her funeral. The flowers are still there, crumbling and turning to dust. All these years later, her things are exactly where she left them, down to the shoes beside the bed and the knitting basket next to her chair. It’s heartbreaking, but he won’t let anyone touch a thing.
The signs of what is to come are there, but no one recognizes them.
For a few years after my stepmother’s death, Daddy carried on with his daily activities. He lives in a rural area, so he’d drive to town to check his mail and go to the grocery store every couple of days. There is a nearby bar where locals congregate, and he made friends with the owner and a bunch of the regulars, spending 3 or 4 nights a week swapping lies and singing karaoke. He’s always the life of the party, and he’s famous for his sense of humor and endless supply of corny jokes. Even though he’d tell anyone who’d listen that he was just waiting to die so he could join his sweetie, he was doing fairly well. My youngest sister, who lives about 150 miles away, visited him almost every weekend for a while, but soon she started coming less frequently and then stopped altogether. My stepsisters visited and called less and less often. Still, Daddy was doing OK. Lonely, but OK.
And then he was diagnosed with colon cancer in 2004, and everything went to hell.
Daddy has a lifelong disability, most likely because of brain damage caused by the misuse of forceps at delivery. It’s rather like having cerebral palsy on one side of his body. Although he has the obvious mobility issues, he has always been able to overcome his disability through sheer force of will, but it’s become more and more difficult for him as he’s gotten older. He completely refuses to acknowledge that he is subject to the vagaries of old age, just like everyone else, and he gets angry when anyone suggests that what’s happening to him is the natural process of aging. After his surgery, his age really started to catch up with him, and his physical recovery was slow and very frustrating. To complicate matters, when he was discharged from the hospital, my sister drove down, picked him up from the hospital, took him to his house and left him there alone, without having done any shopping or cooking or making any arrangements for someone to look after him. I wasn’t really in the loop at this time, because Daddy was still mad at me for not being able to come home when Wicked Stepmother died, but when I called to check on him after he’d been home for a couple of days and found out he had only bread and Miracle Whip to eat, I took charge.
I began doing Daddy’s shopping. He can’t open most prepared food packaging without assistance, so every week I’d cook and freeze meals that he could microwave. I picked up his mail and his prescriptions, drove him to doctor’s appointments, did his laundry, cleaned his house, ran all his errands. His house is 45 minutes away from mine, so I spent a lot of time on the road. After several months, he recovered enough to drive again and he tried to pick up his old life where he left off, but the bar that was the center of his social life had changed hands and the clientele had changed, too, and he didn’t feel comfortable there anymore. After he locked himself out of his house one day when he left his house keys hanging in the lock of his post office box, he stopped driving altogether. Because he sees me every week, the other daughters don’t bother to visit. But he was still doing OK. Lonely, but OK.
And then Daddy needed more surgeries. First it was cataracts and then surgery on his "good" foot. Someone had to be with him because he couldn’t walk at all, and since I wasn’t teaching at the time, it fell to me. I spent weeks away from home caring for him. He’s always been a somewhat pugnacious individual, and it started getting worse. His attitude became so negative that all he could talk about was how he wasn’t ever going to get any better and how he couldn’t understand why god was keeping him alive. He spoke often of wanting to shoot himself, but said he wouldn’t "because it’s against the rules." Still, I took all his guns out of the house (try doing that with an NRA member sometime – it ain’t fun).
Eventually I’m able to return home, but I can see that his depression is starting to get out of control, so we try different medications and even change doctors when Daddy becomes convinced that the current one is trying to kill him. He starts to obsess about his bowel movements, telling me every day, "It’s too much! There’s something wrong!" when everything is perfectly normal. He needs physical therapy to retain his already limited mobility, but a hospital therapist once misunderstood his condition and thought they were trying to rehab a stroke victim, so he refuses to believe that physical therapists know what they’re doing or that therapy can help. "You can’t fix this!" he shouts. His front porch is a hazard for someone like him, but he refuses to let us change it because he and my stepmom built it together. It keeps him from leaving the house sometimes, though he won’t admit it. I really start to worry about what will happen next, but he’s still eating and taking his meds, so we keep doing what we’re doing and the months pass.
And then we’re hit by a major ice storm that knocks out power statewide and paralyzes all travel for days. We can’t reach Daddy or any of his neighbors by phone, and by the time my brother-in-law gets out there to check on him, he has been without power (and heat) for almost 2 days. My brother-in-law finds him lying in the floor, his forehead abraded from scraping on the carpet as he tried to get up, scared half to death and hallucinating about having to crawl over a pile of picks and shovels he thinks someone has put under his bathroom carpet. He has no idea how long he’s been in the floor, but he’s clearly suffering from exposure and, as we learn later, has injured his back.
We get him to the hospital, where they discover that he has a cracked vertebra. He has a procedure to repair it, but then the doctors decide that he needs a psychiatric evaluation because of the out-of-control depression. Unfortunately, the sister who dumped him off after his colon operation is present, and when Daddy vehemently objects to being evaluated, she stands by while he signs himself out of the hospital against medical advice, and she takes him home with her. That lasts only a few weeks. He wants to go back to his house, and she gets tired of being stuck at home all the time listening to him complain, so once again, she drives him to his house and drops him off and doesn’t bother to tell any of us that she’s doing so, though this time she does ask his next-door neighbor to look in on him. I don’t find out he’s back home until the neighbor calls me in a panic a few days later because she can’t get Daddy to wake up and talk to her.
I rush out there and discover that he is in pretty bad shape. By looking at his pill counter, we figure out that he’s had an entire day’s worth of medication (including some heavy-duty pain meds) in the matter of a couple of hours. I am furious and horrified that my sister has abandoned him again, especially since the ice storm made it obvious that he can no longer live on his own. I get the neighbors to help me carry him to the car, and off we go to the emergency room, where they get an emergency order and send him for what will be the first of several psychiatric evaluations.
Over the next couple of years, Daddy does three stints in psychiatric diagnostic units. Each time he’s miserably unhappy about it, but he’s smart and can be a real charmer when he wants to be, and he quickly learns how to play the game and convince the doctors that he’s competent. Each time they tell us it’s a medication issue that’s now resolved and that he’s good to go. The doctors all say he doesn't need a guardian. The "improvement" never lasts, though, and it’s a constant battle to keep him fed and medicated. We put him in an assisted living facility, but he won’t cooperate in his care, and they ask us to remove him. We find another one, but it’s the same deal. He won’t eat, verbally abuses the staff, totally neglects his personal hygiene - it’s a mess. I finally convince him to get a scooter so he can get around, and he does better for a while. I visit almost every day, taking him cheeseburgers (the one thing he’ll reliably eat) and chocolate shakes and making sure he has plenty of disposable underwear and laundry detergent. I help him bathe and shave and give him a haircut from time to time, all things that he won’t allow the staff to do. He winds up in the hospital with an infection and then goes to a rehab unit for a while, where he does very well and actually starts socializing a bit, but then it’s back to assisted living and down he goes again. Another infection and the cycle repeats, but this time they take away his scooter for running over another patient’s foot, so he works extra hard to get back to the hated assisted living so he can reclaim his beloved scooter. The assisted living is 30 miles from my house, but I work five minutes away, so I can easily go visit at lunchtime or on my way home from work. This goes on for over 2 years.
And then I lose my job, in part because my boss decides I’m "too distracted" from caring for my dad, and so I can’t visit every day anymore. I talk to him on the phone several times a day, but he starts to decline. He won’t use the urinal or let the staff help him change his Depends until they insist, so his skin starts to break down and the "take him out of here because we can’t deal with him" noises get louder.
I check around and discover that, because of Daddy’s psychiatric diagnosis, a regular nursing facility will not take him. He can only go to a facility especially equipped for people with his particular needs, and the cost is more than he can afford. (Sadly, he paid for 10 years on a nursing home policy that would have helped a lot, but he canceled it in a fit of pique after my sister dumped him off the second time. He was convinced he would die at home shortly, so it was no longer necessary; my sister helped him make the call.) Our only choices at this point are either qualify him for Medicaid by liquidating and burning through all his assets (much of his savings is already gone - assisted living is expensive) or have one of his daughters take him in. I discuss it with Daddy, and he decides he’d like to come live with me. Although I’m the one who’s been supervising his care for most of the past 6 years, I’m not his favorite daughter, but I’m the only one willing and able to do it. And he likes Dear Partner, so that’s a plus.
My sisters all have full-time jobs, but I’m finishing my Ph.D. and teaching online, so I can work at home and care for Daddy. Only one of my sisters is willing to help out, but he’s been estranged from her since our stepmom died and won’t let her do a thing. The sister who is technically "in charge" of his health care decisions and executrix of his will can’t be bothered – all she’s worried about is whether we can keep the house until he dies so there will be something for her to inherit. In fact, once he came to live with us, she started giving me a hard time about using his income to take care of him. We couldn’t believe it, but she actually expected me and Dear Partner, who is also a graduate student on a small stipend, to bear the costs of his care so that we could divert his entire income into savings! Part of his expenses includes supplementing my son’s rent so he can afford to have his children live with him instead of with us in order to free up space in our house for Daddy. She knows this - all my sisters do. (She doesn’t know he gave me power of attorney over his business affairs when he went into assisted living, and I don’t plan to tell her, either.)
So the big move takes place in February, and we make arrangements to switch his care to a doctor closer to us. He’s been resistant to going to the doctor for years, always insisting he’s "not in any shape to go to the damn doctor" (like that makes any sense), so I don’t tell him about appointments until the morning of. I enlist the faraway sister to accompany us, as she still has great influence with him for some reason. He resists, but we prevail. We see the new doctor, who thinks that Daddy, who’s now turning on the charm and telling jokes, doesn’t seem like someone with Alzheimer’s and dementia, but he wants us to see someone who’s more familiar with those conditions, so he gives us a referral and we make an appointment for a couple of weeks later. As usual, Daddy’s as physically healthy as the proverbial horse. As usual, he refuses to believe it.
Back at home, he’s happy to be out of the assisted living facility and things go well at first. I was always his sports-watching buddy when I was a kid, so I lure him out of his room with the promise of basketball on the big screen TV, but he won’t come out otherwise. I spend as much time as possible with him, watching old movies for the umpty-umpth time and listening to his stories, but I have work to do and can’t sit with him every minute. He won’t go anywhere, and no one but my son comes to visit him, but soon even he won’t come because all his grandpa wants to talk about is how disappointed he is that I haven’t done better for myself because the house we rent is falling down (it’s not). When my son tells me this, I am hurt and a little angry, but I don’t say anything to my dad about it. Later, Daddy lets it slip that my youngest sister has been trying to poison him against me for years. I am not surprised.
One day, while we’re still waiting for his appointment with the second doctor, I go in to wake him up and he’s completely unresponsive. We panic and call 911, and when the paramedics arrive, Daddy snaps to and punches one of them in the face. Fortunately, they just laugh it off, but I’m mortified. They decide that he was just "playing possum." I think it might be a sleep issue from staying awake for long periods of time watching TV and that he’s just exhausted, but when I mention it to the new doctor (who at first also doesn’t think my charming Daddy needs all the psych meds he’s been on), he says it’s psychiatric and decides we need to bring a psychiatrist on board to sort it out. Daddy isn’t happy about it, because it means another doctor visit. I find a psychiatrist and make an appointment, but no one can see him until the middle of June.
His condition starts to deteriorate quickly. He won’t sleep in the bed, staying in his power recliner 24 hours a day. The "playing possum" becomes a habit. No matter what I do to rouse him, he lies there pretending to be unconscious for hours and hours until he’s soaking wet and has defecated. Then he yells for me and says defiantly, "I’m covered in shit," and insists it’ll be impossible to clean up. At first, it’s maybe once a week. Then it becomes more frequent. One day he waits until I’m leaning over him trying to wake him, and then he raises up suddenly and screams in my face. Scares the hell out of me, and he throws his head back and laughs a loud, fake-mustache twisting movie villain laugh. After it happens a second time, I don’t lean over him anymore. I learn how to tell when he’s faking it and when he’s really asleep. I’m still able to get him to take his meds on a regular basis, even though he always objects. I get really good at tricking him into eating, but it gets harder and harder every day.
He can use the urinal and the bedside commode on his own, and he does on his good days, though he needs my help to clean up. He tells me there’s no point, that I can’t do it because "it’s too messy," but of course I always manage. No matter, though; he says the same thing every time.
He starts to obsess about dying even more than usual, asking me several times a day, "How are you going to get me out to Harrah?" where the funeral home is. He becomes convinced that I want to lock him away in a rest home, even though I constantly tell him that’s what we’re trying to avoid. When I want to change his wet diaper or bathe him, he insists there’s no point, because he’s not going to live another 10 minutes, but he can’t tell me what’s wrong. He forgets how the cable guide works, and he’s convinced it’s all messed up. It’s a constant litany of "I hope I can live until this movie is over" and "I can’t eat that" and "That medicine doesn’t do me any good." He wakes me up in the middle of the night to bring him an Ensure or to complain that they "cut out part of this movie." During the day, he calls for me every few minutes to tell me goodbye. Several times I find him lying on the floor in the fetal position, and he can’t tell me how he got there. I finally catch him perched on the very edge of his chair, leaning over further and further until he slides off the chair onto his knees and tips over onto his side, kind of like Arte Johnson on the tricycle, so I start leaving his door open during the day (against his wishes) so I can see him.
I’m trying to hang on until we can see the psychiatrist. He starts verbally abusing me, telling me I’m crazy and stupid and a failure and so on, and it hurts a bit, but I mostly let it roll off my back because I know he’s not in his right mind and none of it is true, anyway. He gets really angry with me because I won’t call the funeral home to come pick him up right now. When I tell him he has to be dead first, he goes ballistic. I know he wants to die. I wish he could. I don’t feel badly for wishing he could. It should be his choice, but it’s not. It gets harder to get him to take his medication or to eat. He fights with me almost every morning over changing his wet pants and the bedding in the chair, but I always win. Sometimes he won’t rouse or cooperate in changing when he’s defecated in his pants, and I have to manhandle him in the chair to clean him up. He starts telling me I’m crazy every time I try to feed or change him or give him medicine. It gets to the point where I’m almost afraid to open his door for fear of what I’ll find. It may be Daddy, or it may be that angry, confused person who sees me as his enemy. To lighten the mood in the house, my long-suffering Dear Partner and I start to joke about what’s behind Door #1.
Our changing brawls become more frequent, but after everything is clean and dry, he apologizes sweetly for his behavior and for being so much trouble. He tells me he doesn’t really mean it and that he loves me. He thanks me for everything I’ve done. He’s still obsessing about the cable guide, so he starts turning off the television (which NEVER used to happen) and sitting there in silence, staring into space. He starts to get confused about other things, convincing himself that urination and defecation aren’t normal, goddammit! He insists, over and over, that he’s dying in the next few minutes. It doesn’t matter what I suggest or offer, he isn’t having any of it. He doesn’t sleep. He insists he can’t stand up when he needs to be changed, even though he can and does. He stops apologizing for being nasty to me. He asks again and again how I plan to get him out to Harrah. He stops using his cell phone to call me when he needs something. I start sleeping on the couch so I can hear him if he falls or calls out.
I spend most of Monday night awake, listening for him. We’ve already picked him up off the floor once, and I haven’t been able to get him to eat since early morning. He won’t even drink an Ensure or eat an ice cream cone, which are my never-fails. Says he can’t swallow, but I do get him to take his nighttime medicine. He is quiet and I think he’s finally fallen asleep, so I nod off about 5 a.m.
I wake up at about 9, and go to see about him. He’s awake and has a dirty diaper. As always, he insists I can’t do anything about it, but I’ve learned how to be calm but forceful in these matters, so I proceed with our usual pants-changing routine. He’s going on about having a dream that the house is on fire, and I’m assuring him that it’s not, but once I have him clean (but still half naked), he grabs his cane and takes off down the hall, looking into every room to find the fire. He sees one of the dogs and starts yelling at me to let her out so she won’t die. He thinks there’s something wrong because the TV in the living room isn’t on. I finally get him calmed down enough to go back to his room and put on some pants, but he sees the missing vent cover in the hallway and decides that means there’s been a fire and I’ve lied to him about it.
I bring him his medicine with a fresh bottle of water. Every morning when I offer it, he curses me, says it won’t do any good, snatches the medicine cup out of my hand, and slams the pills into his mouth. Today, he curses me, tells me I’ve lost my mind, snatches the cup out of my hand, and slams the whole thing into the trash can. Pills go everywhere. I put the bottle of water on his table, pick up the pills, and go to the kitchen to make coffee.
When I look in on him a little later, he's laid out in the recliner and I can see he has soiled himself again. I come in to change him, and he starts with the usual "you can’t do it" and "it’s too messy" and "there isn’t any point because I’m dying," so I decide to wait a bit. I try again several times over the couple of hours, but finally I decide to proceed whether he likes it or not because his bottom’s getting really bad and I’m worried about infection. I put on my gloves and start to remove the diaper and all hell breaks loose. He starts hitting my arms, ranting and raging and screaming, "You’re crazy! You fucking bitch, you’re crazy!" He’s threatened to hit me before and he does have a history of violence (he punched one of my sisters in the face when she visited him in the hospital the other one checked him out of), but I’m not afraid of him and he really can’t hit very hard anyway and he’s only got the one good arm, so I just keep trying to change him. Then he picks up the full water bottle and hits me in the face with it. It doesn’t hurt me, but it takes me by surprise and knocks my glasses off. When he reaches for the remote control, though, I leave the room and close the door.
At this point, I know we are in serious trouble, and we can’t wait any longer to get some help. If he won’t allow me to clean him up, I have to get him out of here to a place where someone else can take care of him. We’ve all been telling him this is what would happen if he didn’t cooperate, but obviously he’s too far gone to understand the consequences. I call the sister with the medical POA, and she tries to talk him into cooperating, but he tells her she’s crazy, too, and tries to throw the phone at me. I’m too fast for him this time, though, and I take it out of his hand. My name is now You Fucking Bitch.
I call his doctor and get the voice mail. I wait a while, but no one calls back. I call the new psychiatrist, whose office manager makes some calls and helps me form a plan. Eventually I have to involve the police by reporting him for assault because the POA sister won’t leave work and drive down to help. We have 5 police officers, 3 firefighters, and 2 paramedics in the house at once. They ask me to stay out of his sight. Daddy throws his cane at an officer. He tells them I’ve gone crazy. He tells them they’re all crazy. The police officers finally get Daddy to agree to go willingly, so they get him in an ambulance, sans pants and covered in shit, and they take him to the ER. I have to hide while they take him out of the house.
He plays possum all the way to the hospital, where they put him under an emergency order for yet another psych evaluation. We have to wait a long time for all this to unfold, and they don’t want to sedate him until he gets to the psych unit, so all the while he’s going on and on about how everyone is crazy and how he’s about to die. Eventually, he gets so out of control that the ER staff decides to station security guards outside his door until he can be transported. I still have to stay out of his sight and the very mention of my name sets him off, so I get everything secondhand. I smoke a half a pack of my sister’s cigarettes, my first since January. I am officially the worst person in the world.
He plays possum in the transport all the way to the diagnostic unit. When he gets there, he thinks he’s at the crematorium, and gee, is he pissed when he finds out he’s not! I fill out more paperwork. By the time I get home, it’s nearly 2 a.m. It’s been a really long day.
So now we wait. After I relate the whole saga to the case manager at the psych unit, they decide to ask for court-ordered treatment this time, so the sister who wants to call the shots but take no real responsibility can’t hose things up. (I don’t think she will this time, but who knows with her.) He is still agitated and delusional and won’t eat or take medicine, but they’re giving him anti-psychotics by injection and he’s calmer when they do, though still uncooperative. A lot of the time he plays possum. The staff says he’s pretending to be dead, because he thinks we’ll take him to the crematorium. They want us to call ahead before visiting to see what state he’s in at the time. They don’t want me to visit at all, not right now, because in his eyes, I’m the bad guy. It’s not uncommon for the primary caregiver to bear the brunt of the patient’s anger, they say, so I shouldn’t take it personally. I’m not. I know I’ve done everything I could to care for him, and it’s not my fault that it wasn’t sufficient for his needs.
The house feels weird, almost like there’s been a death in the family, but it’s a great relief to know he’s where they’re really equipped to handle his needs. We all hope my father can recover enough to come back to our house, but even if he does get better, he may not want to live with us anymore. It’s too soon to tell whether his current animosity toward me will persist, but he’s a grudge-holder and if he remembers any of this, he won’t want anything to do with me. But I can live with that, if it means that my Daddy can find some mental peace, and if not happiness, then at least acceptance of the fact that the number of his remaining days is not for him to decide, however much he (or I) might wish it to be so.
If you made it to here, thanks for reading. It’s a long tale and I’m not a very good storyteller, but I thought I might feel better if I wrote about it. And I do.
Update @ 10:47
Thanks for all the kind comments. I had to go to a meeting about a workshop I'm leading next week, and I just got back. It's my first time on the rec list - I am honored.