My father died on Monday, May 18, two weeks short of his 89th birthday.
My husband the Packhorse had gotten him up and into the shower and shaved, something which could take anywhere from 30-60 minutes (or longer, if Dad was in a mood to be difficult), and plunked him down on the couch in his sitting room wrapped in a towel while my husband took a well-earned break to catch his breath before the challenge of getting Dad dressed. That was likely to be another battle. In the three weeks Dad had been home from rehab in the long-term care facility, he had become obsessed with having exactly the right belt, and was likely to protest if he wasn’t handed exactly the one he had in mind or if it had gotten too big for him during his 3 months of rehab, during which he had lost twenty pounds.
While the Packhorse was gone for all of 5 minutes, Dad developed a breathing problem and fell off the couch onto the floor—he had COPD. My husband saw him, flagged me to call 911, and administered CPR. The paramedics got there in minutes but Dad was gone, and he’d expressed a wish for a DNR. In fact there is one in the Living Trust, bit we couldn’t put our hands on it instantly. Everyone involved from the EMTs to the coroner were kind and assured me nothing could have changed the outcome even in an ER.
I wish I could tell you I was prostrate with grief from losing him, but the truth is, what I mostly feel is relief, because we were at the point of physical and emotional exhaustion from caring for him for 18 months. I went to bed every night with a headache and, by the end of breakfast, could feel the low-grade throbbing start up. Everything was a battle with Dad. And it was impossible to tell how much was advancing dementia and how much was Dad being his normal control freak self.
Things had gotten so bad that, after he was only home for 5 days, I called the Alzheimer’s organization hotline to ask for help in how to manage him because I was at my wits’ end, and my husband, who had worked with geriatric patients as a CNA in a nursing home, was worn out from sleepless nights. I got a wonderful social worker who asked me some pointed questions about Dad’s current and past behavior before he was diagnosed with ALzheimer's. She told me we were in a battle for control of our lives, that we were living with a man who had most likely always had mental health issues long before he got old had because his need for control was abnormally high (I think it was the fact that when I had moved back home after we lost my first husband and my grandmother within a month of each other and he had refused to give me a house key and had ordered me to be home by 11 p.m. or call and explain why that horrified her the most) and that I had been emotionally abused for years without recognizing it). She recommended putting him in a nursing home and walking away from him. The social worker from the local healthcare/rehab group which was doing physical, speech and occupational therapy said the same thing and she had actually dealt with Dad and observed his interaction with us—and I’d reached the point where I finally believed it was the only thing I could do. I was becoming physically ill from the stress of dealing with him.
His battle to run our lives began the second day after my mother-in-law drove down and brought him up here. He marched up to me while I was checking my email and ordered me to make him coffee. I told him, politely but firmly, I didn’t want coffee and had no plans to make any, and that I wasn’t his personal chef or servant—that asking worked a lot better than ordering people around. I was trying to establish ground rules by making it clear that we were there to help him with everyday tasks but we weren’t employees to be bullied or ordered around. I suggested he try asking and using basic courtesy with us.
Dad’s reply was terse. "Why should I have to say ‘please’ and ‘thank you’? You’re my kid. You owe me this."
He then went into the living room and turned the TV on as loud as it would go. When I requested he turn it down, please, because it was loud enough to give me a headache, he refused. His hearing aid didn’t work, and I’d just have to put up with it.
And as soon as my MiL got home, he shuffled as fast as his feet could carry him to complain about how mean I’d been to him. She then lit into me and we had the first of many battles over Dad. I firmly believe that if she hadn’t interfered, if she’d allowed us to set limits and boundaries, the remaining 18 months of caring for him would have gone much more smoothly because he would have known he couldn’t push everyone around as he had for years. Instead, he learned he could get away with pretty much everything because she’d run to enable him—and I was established in her eyes as a heartless brat who was abusing her father by finally, at age 58, refusing to allow herself to be bullied into compliance with his every whim.
Most of the things we asked him to do were simple courtesy—respecting the rights of others by wearing a headset (he didn’t like it, and broke it on purpose) or at least closing the bedroom door while he watched TV so my husband could study (the Packhorse finally had to drop out of his nursing classes because he couldn’t find a quiet place in the house to study, by knocking on bedroom doors before barging in (more than once he interrupted us during an intimate moment) and just generally treating us like equals rather than slaves. By the time we moved into this house, the pattern was established and we were never able to regain any control of our lives.
He fought us about everything, even things the doctor told him he had to do to protect his safety by preventing him from falling—like not getting up in the middle of the night to use the bathroom but wearing Depends instead. About the only thing he cooperated with us on was finally agreeing to allow us to pay his bills online and to add our names to his checking so the Packhorse didn’t have to spend an hour as Dad laboriously signed the checks. He had also refused to sign legal paperwork allowing us to handle his finances –things like a legal power of attorney and a financial one and a medical advance directory (there was one in the Living Trust, but GA has its own preferred form). Typically Dad, he ordered us to handle things without giving us the means to do so easily and simply.
By September, he was beginning to fail. In October he had a TIA. In November, he had his first hospitalization for pneumonia, after refusing to stay in bed, falling, and ending up on the floor without a blanket, several times. He was belligerent about anything we asked him to do for his own safety, and was bruised badly, which meant we had to deal with Adult Protective Services in the form of Bambi (not her real name, but close enough; the poor woman is saddled with a name that sounds remarkably like a porn star’s nom de fucque) the Teenage Social Worker. The case was closed and we were cleared of any misconduct, after someone explained to her that old men with Alzheimer’s fall a lot. In January, he ended up in the hospital with pneumonia again, and was gonna be bedridden for a couple of weeks, so I agreed to Medicare-paid-for rehab at a nearby facility. While there he contracted a GI infection that took a course of antibiotics and another of steroids to cure, and which left him in worse shape than when he arrived. He also refused to eat, and the nursing staff sat us down and asked us if we wanted to insert a feeding tube. He’d made it clear that he didn’t want that and he had a DNR. I had a long conversation with them and we concluded that if he kept deteriorating, hospice would be the best choice. The best thing that came out of the three month rehab stint was that we got a break from round-the-clock care (we got one weekend off in 18 months because we couldn’t afford ten bucks an hour for respite care)It also helped that the people at the facility validated for me that he was a moody and difficult man who resisted anyone telling him what to do and wouldn’t stay in bed at night for them either.
Once he got home, the battles began anew and worsened. He called me a prostitute for no apparent reason, and passed it off as a joke. He physically attacked my husband (he had little strength and normally moved at snail’s pace, but when he was pissed, he had a surprising amount of strength and speed) a couple of times (he’d done the same to me in October) and bit him when the poor guy was trying to feed him. He was constantly angry over everything. He wouldn't stay in bed at night. And he'd wake up with new bruises and abrasions which meant he was either falling and somehow getting back to his room or deliberately harming himself. Meals became a battleground. I ended up with the worst attack of Irritable Bowel Syndrome I’d had in 25 years. That led to my call to the Alzheimer’s social work and to request help from the group that was doing therapy with him. At that point, we all agreed he had to find someplace else to live where someone could watch him 24/7. Both social workers also told me he’d been verbally and emotionally abusing me for decades and that continuing to attempt to care for him was destructive to my emotional and physical health.
Ironically, on the day we were calling for legal advice, he died. His funeral is tomorrow, and once it’s over, I will have my life back with my health and marriage intact. I wish I could tell you that I am grieving for him, that I wept hard as I watched my husband struggling to keep him alive by breathing for him, but I didn’t. I wish I could say that at the end we made peace and love for each other, but the truth is that in the last 20 years, I had only visited them about ten times because visits were so awful. I’d spend time with my mother while Dad preferred to watch reruns of JAG over talking to his only child. He was simply supremely uninterested in me and was probably glad when we left so he could have Mom all to himself again. When I called home and he answered, I’d try to get him to talk to me, but he’d just hand the phone to Mom. He simply wasn’t willing to give up any time to me. By the time Mom died, we were two strangers who shared Mom as a common link and some DNA.
I wanted very much to love him and to be loved by him. I remembered the man who got me reading Edgar Rice Burroughs and Arthur Conan Doyle (and when we joined Netflix, the first thing I did was order s many Sherlock Holmes movies as they had for his amusement), watched classic horror films and The Twilight Zone with me, and took me to see the first Godzilla movie and Forbidden Planet when I was about 6 or 7. But around the time I became a person with ideas of my own, including questioning the Catholic church, he began to pull away from me, to become utterly uninterested in anything I did. There were other issues too (I’ll write about them some day when I have more time and can write it without typing through tears) But mostly he just ignored me, except to heap criticism on me. I began to withdraw myself. I love the man I knew as a little girl, but the man he became, so controlling, so verbally spiteful, was pretty damned hard to love.
Tomorrow I will attend a funeral Mass for a virtual stranger, clean out the three rooms he occupied, and have a life again. I wish I could mourn, but right now, I don’t have many tears left. I cried most of them while he was alive, asking my husband what I had done to make him treat me so badly, to dislike me so much. To call me names, to bully me And that is the truly sad part: I lost Dad many years ago, while he was still very much alive, and it was his choice. I have cried over that, and am saddened by that loss.
Goodbye, Dad. Rest in peace. Maybe when we meet again, you’ll remember the daughter you loved—and be able to love her again. I miss the man you used to be.