My father, who is 88-years-old and suffers from Alzheimer’s and Parkinson’s, returns home on Wednesday, April 29th. Someone of you will find it strange that I have very mixed feelings about this. He will do better at home than he did in rehab, which mostly warehoused him and did little to rehabilitate him after he became ill with a gastro-intestinal illness which took two courses of antibiotics to treat and left him very weak and thin. He’ll eat better and will be among his own belongings and have us and the cats for company. He will be much happier and more comfortable.
On the other hand, it means that our freedom will be non-existent. We can’t even run errands together, because one of us has to be home at all times, since Dad can’t be left alone. Seeing a movie together or having a rare dinner out without Dad will be equally hard. Medicare, for which Dad is eligible, doesn’t pay for respite care—a sitter who will watch him and give us a break a few hours a month. He has too much income for Medicaid which does provide help. Sitters cost 10 bucks an hour if they aren’t from a bonded company, just some person we hire. A bonded company charges 20+ dollars an hour. Adult day care is $50 a day. Since my husband and I are on a Navy pension until he finishes his R.N. degree and pay all the basic living expenses (Dad’s Social Security pays for his insurance policies and the cost of maintaining that damned house in FL we’ve been trying unsuccessfully to sell for 3 years and not much else), coming up with extra cash for luxuries like time to ourselves is hard to come by. Which means Dad will have to come with us when we do our monthly shopping, which he hates because it bores him, and a bored Dad is a difficult-to-deal with Dad (think a cranky toddler ready to throw a tantrum) or shell out money for a sitter. Dad is a proud member of the Order of the Tight Fist and hates to spend money on anyone except himself. This time he won’t have a choice. Since I am an only child, we are his sole caregivers, and there is no one to spell us. My in-laws don’t care. When he was in the hospital with pneumonia twice, only my MiL called.
That, folks is only part of the joy of living the long goodbye. For those of you who want the long version I highly recommend reading The T35 Hour Day. It’s honest, well-written and compassionate , and paints an accurate picture of what it’s like to live with an Alzheimer’s patient. For a look at the stages of Alzheimer’s. go here. Dad varies between moderate and moderately severe stages, depending on whether it’s good or bad days. He’s pretty sharp about the past, okay about the current time if he’s been watching CNN a lot, but hazy about many things. He has incontinence issues, cannot bathe or dress himself without a lot of help, and must wear adult diapers. He can only walk short distances. He falls often, partly due to Parkinson’s as well as Alzheimer’s, which can leave him badly bruised. Because he hates asking for help, he falls more often than he has to. He regards any infringement on his autonomy for his own safety, like not getting out of bed at night, as an insult to his dignity, and he fights it, becoming belligerent and sometimes outright nasty.
He came to live with us in January 2008. We’d been trying to get us to live with us for 3 years, but he’d refused. He insisted we move down there. We refused because my allergies are bad in GA, but in Ocala, FL, they become impossible. The second reason we refused is because the living conditions would have been impossible. It would have been Dad’s house, not our mutual home, and he would have felt completely in control and would have refused even the most basic requests, like not setting the thermostat at 85 in the middle of summer—even though the temp in the guest bedroom we would have been living in was actually closer to 90, and despite our willingness to pay the damned electric bill. It would also have been very noisy, because, even though Dad had a hearing aid, he refused to use it, and the volume on his TV was in the vicinity of a heavy metal concert—and his den was five feet away from the room we’d have been living in ( once we got him up here, I basically told him either he wore it or I’d hide the remote). And the final reason was that my husband was in nursing school and would have lost a year establishing residence down there. We only got him up here after a frantic and unpleasant call from his neighbor after Dad fell badly. It took sending my MiL down to talk to him to persuade him. He only agreed because FL was yanking his driver’s license after three fender benders in a short period of time, and he was afraid of being without transportation.
When he got here, we knew he had Parkinson’s, but not about the Alzheimer’s. We only learned about it when the letter from his neurologist to be sent to the state of FL as part of his campaign to keep his license, arrived. Right at the top, where it said "diagnosis" were the dreaded words "Alzheimer’s Disease." When I confronted him about it, he denied it. Even after I showed him the letter (he yelled at us about opening his mail), he said the doctor had not told him (it is not unusual for sufferers to be in complete denial of their illness).
At that time, he was in the earliest stages. He was very cognitive. But there were still signs. He had some odd, obsessive behaviors, like strewing all his bills for the month on the bed and then arranging them in piles which he’d then fan out and rearrange. When he put them away, he’d forget where that safe place was, and wake us up at 3 a.m. and demand we find them for him. He was also extremely manipulative, and tried to establish control over us by refusing to cooperate and by giving orders. I had to learn the hard way that when issued a command like "make me some coffee" rather than a polite request, I could refuse. I had to set boundaries, not easy when you’ve handled clashes with him in the past by either caving or ignoring the problem. At 58, I finally rebelled against being treated like child, and learned to say "no".
Which brings me to another lesson I learned the hard way: if you had issues with your parent before they become ill, those issues will not magically disappear. In Dad’s case, he was always self-absorbed and had to be in complete control. When I loved back home at age 34 after losing my husband, he refused to give me a key to the house. If I went on a date, I had to be home by 11 p.m. or call so someone would wait up. When I pointed out that that if I had a key, no one would have to wait up, he said it was his house, so he made the damned rules and if I didn’t like it, I could move (I would have, but the only job had been able to get was adjunct faculty and I made a handsome 500 a month, which was enough to pay room and board, but not much more). I was expected to attend Mass, even though I hadn’t been a practicing Catholic since I’d married. My mother stopped that after I muttered during sermons. For all of these reasons, I knew what life was gonna be like with Dad and I worked hard to make it clear I was not a child or his unpaid servant, but another adult sharing a house and helping him with the necessities of life.
One thing I was told by a wise Kossack was to set boundaries early, and begin the way you mean to go on. If I hadn’t, life would likely be miserable. This house is in both our names, which helps me to not bow to his every whim, not that he doesn’t try. We had some very unpleasant scenes while they finished this house and we were living at MiL’s. If I refused to be ordered about, he’d run to MiL and she’d stage a scene, accusing me of being uncompassionate to a sweet old man without actually finding out what had really happened. Once we moved out, he tried pulling that again, and I told him if he didn’t phrase things as a request instead of an order, wouldn’t talk to him. He wouldn’t budge, so I didn’t speak to him for 36 hours until he apologized. We still have bad moments, and a couple of times I have yelled at him when he was intentionally saying hurtful things and calling me names. My husband made it clear that he wouldn’t allow that and asked Dad what he would have done if someone treated Mom that way. He started to say I was his daughter and he’d talk to me anyway he liked, but my husband interrupted and said, "That wasn’t what I asked." He got a grudging admission that he’d likely have punched the guy in the nose for being so disrespectful. My husband pointed out that he wasn’t likely to punch an old man, but he didn’t have to talk to him give him the care he needed. Dad was a lot better after that.
The first real battle was over the car keys. He wanted to drive. I’d already talked to the local Alzheimer’s group, and they told me that if he injured someone, we, as his caregivers, could be sued and held responsible. My mother-in-law took his side, until I told her that since she knew about his illness and he lived under her roof, she could be sued too. She then changed her tune. We took Dad’s car keys and hid them. When it came to taking his test to regain his license, we didn’t mention it—and he didn’t bring it up until after the date passed, by which time it was way too late. There were many unpleasant scenes in which he accused us of depriving him of his independence, his freedom and his dignity, even accusations of keeping him prisoner so we could steal his money (he lives on Social Security and $300 a month from some investments). The second major battle was over wearing Depends to bed—we were stealing his human dignity. I asked him how dignified it was to pee the bed, himself and the carpet four times in one night. My husband got 4 hours sleep a night for 4 nights straight, and we finally stopped phrasing it as a request and said he didn’t have a choice, because my husband’s health mattered more than his dignity.
Since September, he’s gone downhill. He is still cognitive, before he deteriorates, we’re going to have to get all the legal paperwork done to allow us to handle his affairs when he does enter full-out dementia. He was unwilling to do so before (the stealing his money thing and a basic distrust of my ability to handle his affairs) but now I think he’s realizing that he actually will die some day, and he’ll leave a mess if he doesn’t. We already have our names on his bank accounts and handle his bills (getting him to agree to that was another battle). He has occasionally told us stories that were outright whoppers (like he’d cut his finger and the doctor and "chief medical assistant" wanted to treat it; the LPN told me he’d made that one up out of whole cloth, which isn’t unusual—and there was no cut and certainly no "chief medical assistant") which he completely believes. It’s the senior equivalent of young children making up stories about their imaginary friend. He’s in far worse physical shape and has been hospitalized for pneumonia twice in a year. When his mental condition deteriorates into the final stages and there is no Dad left, just an empty shell, I will look into hospice are so that he won’t have to receive aggressive medical care when his mind is gone—this is according to wishes expressed in the living trust and to me verbally, but also included in the GA medical directive he’ll sign.
One of the most difficult parts of living the long goodbye is watching someone you know and love lose parts of himself. Dad hasn’t reached that point yet. He is still cognitive and aware, and his personality is mostly intact. He loves movies, and we have Netflix, so I try to order an occasional movie I think he’ll enjoy. We watched the original Star Wars trilogy over a long weekend. I think we’ll do Lord of the Rings. I’ve run out of Sherlock Holmes movies to watch, and I kinda draw the line at sitting through a John Wayne marathon.
But I know what I will be facing because I’ve done my homework. As dementia takes hold, the brain suffers greater damage. In the later stages, there can be major personality changes. A clam person who prided herself on never losing her temper can be come angry and belligerent. A person who was always authoritative can become filled with doubts, tearful and dependent. Someone gregarious can become depressed and withdrawn. And some just fall back on old habits event tough they no longer are capable of manipulating or behaving in a controlling manner consciously. Often sufferers can no longer face everyday tasks. Even taking a shower becomes overwhelming because there are so many steps involved. Getting to the bathroom, taking off your clothes, turning on the tap, getting into the shower, washing, getting out of the shower, dressing--that many steps can send them into a tizzy and what the authors of The Thirty-Six Hour Day call a catastrophic reaction. The brain is overwhelmed and the person just loses it. They can burst into tears, become belligerent and combative (Dad’s usual mode even now), accuse the caretaker of trying to kidnap, imprison or kill them, but however they react, it appears way out proportion to the stimulus.
Think of an overtired, over-stimulated, hungry three-year-old, who needs to eat and take a nap and pitches a hissy fit—what a wise mother of three calls "Nuclear meltdown kid". The difference is that the kid is an adult who weights a lot more than a three-year-old and who can do a lot more damage When my husband was a CAN in a nursing home, he was called to report to the charge desk immediately. One of the new patients who wanted to go home was striking at the LPN and several CNAs (all female) with a cane. This guy was 5’10" and weighed around 170; he could have seriously hurt someone . My husband simply came up behind him and tookt he cane from him while it was on the upswing. HE then persuaded the guy to come out on the porch, gave him a cigarette and talked him down. CNAs and nurses who work with dementia cases will all have stories about coming home with bruises or more serious injuries. Just because someone is old doesn’t mean they can’t do bodily damaged when they have a meltdown.
The book I have recommended gives a classic catastrophic reaction story. We’ll call the caregiver Jane and her mother Mary. Jane had to take her mother to the doctor’s. Mary refused to take a bath. She kept screaming out the window that a stranger was holding her prisoner. Luckily, the neighbors knew all about her illness. After Jane finally wrestled her into her clothes, Mary refused to go. Ot took Jane and two kind neighbors to get Mary into the car, and Mary rolled down the windows (always use the kiddy locks on windows and doors) and screamed at everyone they passed that this crazy woman was kidnapping her and holding her prisoner. We haven’t had anything like that happen, but the last time Dad got pneumonia, he refused to cooperae and wouldn’t go to the doctor. We finally agve up on getting him showered and shaved and simply put on the warmest pull-on clothing we owned among us—my husband’s paint-spattered sweats—and called an ambulance. He kept telling me my husband had hit and threatened him, and he was gonna tell the doctors we were abusing him. We got him into the ambulance (the EMTs told him he was really sick, so he agreed to go), and had to follow. By the time we got there, he was on oxygen and smiling triumphantly, announcing that he had told the doctors we had put him in these rags and were abusing him and hitting him. We’d explained to the EMTS, that he had Alzheimer’s and was having a catastrophic reaction, and that he’d been the one doing the shoving and hitting (I had bruises to prove it). Since he’d been belligerent with the staff and telling some pretty tall tales, they believed us—or we could have faced a criminal investigation for elder abuse. I now know that when he gets combative like that, he’s probably getting six. The elderly get ill very quickly. On Sudnay night, had had just a small problem clearing his throat, no temp, no swollen glands, no problem breathing. By the next morning, he was in full-blown pneumonia and behaving like someone having a psychotic episode.
A typical day with Dad begins by waking him up between 11 and 12 a.m. He is not a morning person, so getting him up earlier is a battle. We pick our fights and since we’re not morning people either, it works out. My husband gets him showered, shaved and dressed. On a good day, it takes about an hour. If he’s having a bad one, it can take twice that long. He then eats breakfast with us. We take him to the toilet before escorting him to his den, where we turn on the TV for him. We check him ever 30-60 minutes and make sure he get to the bathroom frequently. Around 6:30 or 7, we have dinner. It takes around 10-15 minutes to get Dad out of his chair and to the kitchen. We have to cut his meat for him, and supply him with a spoon for eating rice or peas. One of us gets him back to the toilet, then to his den for the evening, while the other cleans up around his chair (it’s like eating with a toddler or 2 year-old because he last much of his manual dexterity due to Parkinson’s). Around 9, we get him into pajamas for bed, and he watches TV and says interminable long prayers. We give him his night meds and put him in bed at 11. With luck he will actually sleep through the night and not get up and fall. Since he sundowns, the tendency of patients to wander at night or become more active, this isn’t always the case, which means a disturbed night for us. Even when we aren’t with him or checking on him, you’re listening with half an ear to make sure he’s okay.
The greatest loss to us is the ability to do things together and to have privacy. Dad has always regarded my bedroom as a place he can enter without knocking. He has walked in on me naked while I was dressing. We asked him to knock (we can’t close and lock the door because we have cats who sometimes sleep on the bed), and he’s learned that much—but once he knocks, he barges right in. At least once he has disturbed an intimate moment and gotten an eyeful. You learn to laugh, because if you don’t, you’ll lose your own marbles.
Why do we do this when he can be so difficult and we lose so much? Because when he isn’t having a catastrophic reaction, he’s my Dad and I love him. Nursing homes, even the good ones, are institutions. They are depressing as hell for those who aren’t in final stages of dementia. Some patients require skilled nursing care but are cognitively fine. You have people who are mentally healthy but need a lot of care 24/7, even though they don’t need skilled nursing—more care than many families can give after years of providing it. You have people with mild to moderate impairment like Dad. And they share the place with people in the end stages of dementia, who have long ago left the (mental) building along with Elvis. These people will cry for help or make involuntary noises. They often live in the past an think they’re 17 again. One elderly and rather sweet lady my husband cared for nicknamed "Delta Dawn" because every so often she’d pack a suitcase and tell the staff her boyfriend was picking her up so they could elope because her family disapproved of their marriage. Sometimes telling her he’d called and had to cancel worked. Other times it sent her into floods of tears. Some will become physically combative (they often bounce from home to home) Dad hated being in rehab, so after his Medicare-paid-for 100 days, he’s coming home. I promised him I wouldn’t put him in a home unless were physically unable to care for him, and I intend to keep that promise to the best of my ability.
Caring for a parent with Alzheimer’s is a challenge. It can threaten the caregiver’s health, marriage and sanity (many caregivers suffer from low-level depression, because there’s never any end to the task in sight; Alzheimer’s patients can live for many years). I now know precisely what we are facing, and we have made some plans to deal with it This time, though, he is gonna have to shell out some money for respite care so that we can manage some time alone together—and I need an Alzheimer’s support group The rewards aren’t many materially, but you do get that person’s company while they are still there mentally, and you know you are doing the right thing. Sooner or later, it may well come to hospice or nursing home as his illness outstrips our ability to care for him. Two people doing the work of three shifts of CNAs who only work 8 hour shifts 5 days a week takes its toll on the family. It will be stressful. And I know Dad will make me so angry I will occasionally lost and yell at him, and I have to learn to forgive myself for doing so. It won’t be easy, and there will be rough patches But I made that promise, and I will do my damnedest to keep it.
NOTE: This will likely be my last diary for a long time. It’s hard to write when you are constantly interrupted. Even when Dad was in the nursing home for the last 3 months, it was hard, because we were there every couple of days to check on him. It ate up a lot of our time. And for those of you who have asked about the whereabouts of Sasha, the Christmas Ct—he’s in the area, there have been sightings, but he won’t let us get near enough to catch him. We’re considering humane trapping followed by an instant visit to the vet where he will have a born-again experience and instantly convert to the Church of the reformed Tom. The miin reason we hadn’t gotten him neutered before was time—Dad became ill in mid-January, and the hospital was an hour away. I haven’t given up hope that Sasha will return after mating season, but I think we’re rescuing a kitten anyway—it’s just too quiet without him and our youngest cat needs someone to play with.