“All that you touch
All that you see
All that you taste
All you feel
All that you love
All that you hate
All you distrust
All you save
All that you give
All that you deal
All that you buy, beg, borrow, or steal
All you create
All you destroy
All that you do
All that you say
All that you eat
Everyone you meet
All that you slight
Everyone you fight
All that is now
All that is gone
All that’s to come
And everything under the sun is in tune
But the sun is eclipsed by the moon.”
Eclipse – Pink Floyd
This and “Brain Damage” plays through my mind with regularity these days when I think of the last few years with Mom. I started this a week after she was diagnosed last year and it has taken me a year to be able to finish it. My dear friend and sister in every sense of the word, Denise, better than anyone else I know, completely understands why. But now, I think I’m ready. We’ll see.
This is very long, but it takes a good bit of time to get to the dark side of the moon.
Mom was diagnosed via CT and in-person in June of last year with vascular dementia. The non-medical summary is that through a lifetime of frequent mini-strokes (TIA’s), the blood vessels in her brain have and are dying off because they are blocked and cannot get the blood and oxygen needed to sustain them.
Sudden and dramatic degradation, such as what I witnessed up close and personal from the beginning of May until July 11 (after a sleepless night in which I literally begged God all night to help because I just didn’t know what else to do) last year when I got the call at 7:15 in the morning from a mental health person at the hospital who told me they were doing an involuntary commitment to a geriatric psychiatric hospital in the area, to which I agreed (the answer to my prayer), is one of the hallmark symptoms of a vascular dementia “step.” Generally, the pattern is a step of decline, a period of stability, then another step of decline.
There was a gradual decline for several years, punctuated by sudden episodes of anger, delusion, suspicion, and outbursts, but Mom was still able to, for the most part, function pretty well on her own. Because I live nearby, I was the easiest and most frequent target. Deb, who visits regularly, shared the wealth when she was here. The worst episodes, until last year, were during her hospitalizations in 2008 and 2009. Her last hospitalization in 2008 and her mid-summer hospitalization in 2009 were my previews of what May, June, and the first 22 days of July 2010 would look like for her and me.
In August of 2008, just a month and or so after Mom was hospitalized for pulmonary embolisms, we had about a week and a half of emergency room visits because, except for one episode in which she was vomiting violently, of her blood pressure. Each time, I’d take her after I got off of work, we’d spend until 2 or 3 am there, they’d stabilize her, I’d go get prescriptions if necessary, take her home and get her in bed, then stay up and just go back into work the next day. The last visit to the ER for blood pressure was the one that almost killed her.
Her blood pressure was dangerously high when we got there around 6:30 pm. The doctor on duty gave her blood-pressure lowering medicine every hour without significant changes for several hours. They had the alarm activated on the monitor, and that sound became etched in my memory as it went off every 15 minutes or so each time a blood pressure reading was performed. By 2 am, I was concerned about how much medicine they had given her with no measurable results and told the doctor I thought they should admit her. She said “we’ll do one more hour’s worth of treatment, and if that doesn’t change anything, then we’ll admit her.”
In the following hour, they managed to get it down to high normal (less than 200 systolic and less than 90 diastolic), so the doctor said they would release her. I made sure my objections to the release were on file before I left, because it just didn’t seem like a wise decision to me. We were on our way by 3:45 am, and I got Mom home and in bed, and went home myself to make coffee and get ready for work. At 9:30 am, I got a call from the retirement community where she was living to tell me that her blood pressure was dangerously low and I needed to get her to the hospital right away.
I left work and took her to the ER. Not only was her blood pressure dangerously low, but her heart rate was also dangerously slow. The attending doctor, nurse and I discussed the situation for a couple of hours and they made the decision to admit her. I did not have her living will and DNR with me – since I’d come straight from work and they were at home (a situation I rectified the day after she was admitted) – and I told the nurse I was going home to get them after they took her to a room. The hospital was 5 minutes away, so I ran home and got the documents and by the time I got back, they had given her a heart stimulant (which the DNR and living will would have prohibited) and were moving her to ICU.
I got the documents on file, got her settled in ICU, and went back to work for a few hours to finish some work that had to be finished that day. As soon as I got done, I went back to the hospital into ICU, where a shift change had happened within the hour. Mom had been quiet and docile all day, but now she was fussing and angry. She hadn’t eaten anything since breakfast and was furious because she hadn’t had dinner. I went to find a nurse – who promptly told me she was overwhelmed and didn’t usually work in ICU, but she would see what she could do – and within 10 minutes, dinner appeared. Mom was suspicious of it and angry because it wasn’t what she wanted (silent !?! on my part). I finally managed to get her to eat, but she was still fit to be tied by the time I left around 10 pm.
I had talked to Deb earlier in the afternoon to let her know that Mom was being admitted and called her after I left with the update. I went home, ate, and got some much-needed sleep.
I had been up for a couple of hours, planning to run by the hospital and then go to work, when the overwhelmed nurse from the night before called me at 6:30 am to tell me that I needed to get there and get Mom calmed down because she’d given the entire ICU staff a fit during the night. You’re going to get used to seeing a variation of this phrase and/or symbol combination denoting my responses: silent !?! was my response (you are nurses, so isn’t your job to know how to deal with agitated patients? If you don’t know, what in the world makes you think that I know?!?!?).
I was at the hospital before 7 am, and Mom seemed calmer, but was not making any sense when she talked. A cardiologist came in around 7:30 am and was trying to ask her questions and she was all over the place. He looked askance at me and I shrugged my shoulders because I didn’t know what was going on either, and started answering the questions. He explained some tests and medicine that they were going to put her on, since her blood pressure was still very low as was her heart rate, and then left.
Deb got there around 9 am, and we began to be inundated with about 8 hours of the most bizarre experience, to date, that either of us had had with Mom. She spent 90% of the day looking out at the nurse’s station and commenting on what was going on. They ate cake a lot, and at times there were animals, and there was even a plane crash. Initially, Deb and I looked out to observe, but after realizing that nothing she was saying was happening was, we settled into a realization that she was hallucinating. We decided, in a conference during a break from the madness, to just go along with her and not try to correct her.
There was a flash of anger and paranoia just after lunch when she jumped all over Deb and said “Don’t give me that look of hate,” which really upset Deb, but it passed quickly. The afternoon was filled with her seeing letters being written and tracing them with her hands and more plane crashes and exotic animals at the nurse’s station.
But just after dinner, she turned the corner into complete anger and agitation. I went to the nurse’s station and asked for something to calm her down. The nurse there said that older patients tended to get disoriented and agitated with hospital stays and she would call her doctor and get some anti-anxiety medication for the night.
I don’t know how much they gave her during the night, but she was mostly unresponsive the next day. The blood pressure and heart rates were unchanged, but she was mostly “asleep” with sudden bursts of lucidity and conversations about death and Daddy, throughout the day. She had little to eat or drink. Deb and I were convinced it was the end.
But, once again, around 7 pm, she was wide awake and angry and paranoid. I will never forget her looking at me and screaming that I had put her in a nursing home and had not even talked to her about it. She was furious! As the tears stang my eyes and I struggled to control my own anxiety attack, I calmly told her where she was and what was going on. She called me a liar.
I really had to fight my anger and the temptation to completely go off on her, but I went to the nurse’s station and I asked them to move her to a private room. They, to my surprise, said okay, and moved her, which calmed her a little bit, and I got her settled in for the night, and then took the empty bed in the room to stay with her through the night.
By the next morning, she was completely calm, but weak. I had looked at the urine from her catheter, and it occurred to me that she was getting dehydrated. While I was waiting for coffee, I went to the nurse for the floor and asked her if we could give Mom a hydrating drip. She agreed.
Coffee came but the drip was nowhere to be seen. Mom ate a little breakfast, but was weak and soft-spoken, albeit coherent. About 11 am, the nurses finally came to attend to Mom. They asked us to leave the room while they changed the catheter, etc. The door was halfway open, and we heard the shouting, so Deb and I went in, and Mom had collapsed and was in bed. Her blood pressure and heart rate were the lowest they’d been and she was whispering that she was ready to be with Daddy. I told her it was okay to go.
At that point, there were several nurses in the room and a doctor right in my ear telling me we needed to get drugs in her, and I said “No.” As medical POA, my job was to honor her wishes. I said the only thing I had agreed to was hydration and if that corrected the problem, then fine and good, but if it did not, then it was Mom’s time to go. The doctor couldn’t ultimately do anything I didn’t agree to because of the living will and DNR, but she spent a lot of time trying to convince me to take extraordinary measures.
She almost died. The nurse told me after the fact that we were about 30 seconds away. But the hydration worked and she left the hospital within a week.
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Mom’s health outwardly stabilized after that – and I realize now that she was having more frequent TIA’s, but because they were either when she was sleeping or when I was not around, I was not aware of how pervasive they had become – but her mental health was more obviously more iffy. There were more frequent and unexpected sudden outbursts of anger and paranoia against Deb, when she was here visiting, and me on and off on a continual basis. Deb came for Thanksgiving in 2008 and we agreed, after a funky Thanksgiving day, when she went off on both of us, that we would give her the option to spend time with us and if she said “no,” we’d accept it and do our own thing from that time forward.
We reminded each other not to take what Mom was saying and doing personally, and I will never forget Deb saying “If Mom knew what she was doing, she would be absolutely appalled.” I struggled to remember that in the May to July period of last year, but it was never so far away that I didn’t eventually, no matter how bad, how draining, how painful, how difficult an encounter with her had been, bring it back to the front of my memory.
Things started changing more dramatically in December 2008 (I didn’t realize it then, but hindsight is truly 20/20). Mom started just randomly with no reference point trying to push me away (and at the time, I believed trying to provoke me into abandoning her). She was brutal and harsh and it hurt.
But I had a promise to keep to her and to my daddy and to God, and the reality is that I loved her enough that I couldn’t leave her, especially if she was going – as I believed at the time – insane – vulnerable, unprotected, to the whims of strangers. In many ways, her descent in this disease made our bond stronger. I reminded myself daily that she and Daddy didn’t walk off when we kids were helpless, sick (I was seriously sick enough the first couple of years after they adopted us that Mom and Daddy were not sure I was going to survive), and completely dependent on them for everything. They both set the example for me and now was my time to step up to the plate. I took a lot of deep breaths, prayed almost non-stop, and made a quiet, but determined, commitment to never quit her.
How I didn’t in those intervening months is a testament to God’s guiding hand and intervention along the way. If I never believed in miracles before (I tend to be of the doubting Thomas ilk: “I need to see it and I’ll believe”), I certainly became a believer in those subsequent years and months.
We rocked along, in every since of the word, in 2009. The year began fairly quietly, but things picked up pace in the spring. Mom ate the noon meal where she lived and her doctor had ordered a low-fat diet, based on her blood pressure, which meant the kitchen had to fix her a piece of baked salmon, cod, beef, or chicken every day instead of what was on the buffet. Mom gradually complained about how slow her food was coming out compared to everyone else’s. I got a call one day from the Director of Residents saying Mom was sitting in the dining room, very upset, and wanted me there.
So I went, and apparently she had made quite a scene after her food didn’t come for an hour and one of the kitchen staff popped off to her in a disrespectful manner and Mom was still madder than a wet hen when I got there. And after listening to the way the dietary manager talk to her, I was convinced that there was some reason for her to be upset, but I was also aware that she had overreacted. She was redder than a beet and shaking from elevated blood pressure. I calmly told the dietary manager that he needed to remember that if it weren’t for the residents he and his staff wouldn’t have jobs there, so they needed to be respectful and responsive, especially to something they are already knew about and that was not an unreasonable request.
He started to get attitude with me and I quietly but firmly told him he was picking the wrong person to go down that road with. I guess something in my voice and/or my demeanor (I wasn’t angry, but everything about my body language told him I meant business) got through to him, and he started backpedaling and apologizing. I told him that he needed to apologize to Mom, not me. He did.
The Director of Residents asked me how we should proceed. I told her that I needed to get Mom back to her apartment and she needed some time to calm down and for us to talk about it. So we agreed that she would come down and discuss it with Mom and me in an hour. I managed to get Mom calmed down, but her decision was simply to cook all her own meals and not eat in the dining hall anymore. When the Director of Residents came in, we gave her Mom’s decision.
When I was on the way out, she came and asked if she could talk with me. She explained that the monthly rate required that the residents eat one meal a day in the dining hall and that couldn’t be changed. I realized even trying to explain that to Mom would be useless, so I told her (they were taking some charge off…not sure what) to just make the adjustment and let Mom do what she wanted without telling her she had to pay for one meal a day. That worked.
Over the next several weeks, Mom started getting in arguments with another resident whom she had known when they lived at the same apartment complex. It got pretty vicious and Mom got downright hateful and she developed an intense dislike and suspicion against this lady. Within 8-10 months, it would be an all-out war.
In July, we went to visit Deb over the 4th of July, and she was fine for the first few days, but we both noticed that her breathing was labored and she was sleeping a lot by Sunday. On Monday, she was dozing most of the day. On Tuesday, when I got up and went downstairs to get coffee, she was waiting for me and said she was sick and needed to go home (we were not supposed to leave until Wednesday). She dozed most of the way home. I asked if she wanted to go to the doctor and she said she didn’t. I got her into bed and told her I’d be back early the next morning and if she wasn’t any better, we were going to the doctor.
I got over to her place around 7 am the next morning and she wasn’t any better, so when the doctor’s office opened, I called, explained what was happening, and they gave us an appointment in the afternoon. Long story short, she was in full congestive heart failure and we went straight from the doctor’s office to the hospital where she was admitted. I notified the family and told everybody just to wait until we got more info about what the doctors were going to do. Her cardiologist recommended a pacemaker, after some of the fluid had been pulled off, and Deb came up for the surgery.
The trouble began right after she had the surgery while she was in recovery. And this was the hospital’s fault because their communication sucked, but she ended up getting transferred to three different rooms in a very short amount of time, and it threw her for a loop. She was already getting in a “mood” the next day after the surgery, because she’d already been moved twice. I remember the look she gave the nurse (who was not “Miss Friendly” to begin with) and then the anger at Deb and me that came out of nowhere. We realized where it was going and telepathically made the decision to leave because it just wasn’t going to be good for anyone. I will never forget booking out of the room and running straight into the arms of our minister who had come to visit and blurting out “she’s all yours!” We talked for a bit and I told him what was going on, and he went in and we left.
Deb and I decided to go get some dinner and just as my food came, my phone rang. I didn’t recognize the number, but then Deb said it was probably the hospital, so I started calling back. Well, the hospital central desk had no clue where she was (they had moved her a third time that afternoon), and gave me a nurse’s station that had no clue who she was and transferred me back down and the transferring to nowhere went on about 10 minutes. While I was waiting for another transfer, my phone rang again and I picked up the call.
The nurse explained who she was, then said “your mom wants to call the police to report that we are holding her against her will and she wants to talk to you. I think you need to come over here right away.” I immediately said that I wasn’t coming, because it would only make things worse, and then told the nurse to get the doctor on call to prescribe some anti-anxiety medication (and not tell her what it was or she wouldn’t take it) or they were all going to be in for a long night. She spent about 20 minutes trying to convince me that I needed to come there, and I kept repeating what I’d already told her. Finally, she agreed and I told her that I would talk to Mom on the phone if she’d transfer me into room. That seemed to calm the nurse down some. She transferred me and the phone just rang and rang with no answer.
I hung up, told Deb the part of the conversation she didn’t hear, then started the hospital phone tag again. I remembered the nurse’s name, so they finally got me, after another 15 minutes or so, to the right nurse’s station. The same nurse answered and said the phone in Mom’s room wasn’t working, so they were getting it replaced. In the meantime, she told Mom that she had called me (she had been trying to call while I was trying to call) and I hadn’t answered, so I was probably busy (which I didn’t know). I told her to go into the room, call me from that phone, and I’d talk to Mom.
She did, and when I answered, she told Mom I was on the phone and tried to hand the phone to her. All I heard was Mom say “well, if she’s too busy to talk to me, then I don’t want to talk to her!” The nurse got back on the phone and I asked her where that came from and then she told me what she’d said to Mom. I groaned and said “you’ve got a long night on your hand.” She never understood what she’d done wrong, but by that time I was so used to Mom twisting, either because of hearing or because of the mental changes, everything she heard into something negative. She was calmer the next day and was “back to normal” by the time she was discharged, but I had already decided to talk to her doctor about prescribing anti-anxiety medication as part of her daily medication, because it dawned on me that anxiety was a large part of the rest of what was going on (including TIA’s).
We had the follow-up appointment with the doctor a week later. When I set up the appointment, I talked with his nurse and asked if I could talk with him alone before he saw her with me in the room and explained why. She whispered in my ear as we were walking back that she would come and get me and we’d go to another room to talk. Which we did. Her doctor agreed that anti-anxiety medication was needed.
But the nurse and me going out of the room together triggered Mom’s paranoia and when we came back in, she was livid and ordered both of us out of the room and demanded that she talk to her doctor alone. I remember Annie, the nurse, looking at me and shaking her head. Her doctor prescribed the medication and I took over making sure that her meds were portioned out every day on a weekly basis.
In the fall I began to notice that doses were randomly getting skipped and I realized she was having a hard time keeping up with them day-to-day. It was late that year when she announced to me that she was tired of taking all the medication and she just wasn’t going to do it anymore. She had, since the follow-up to the pacemaker, not allowed me to go with her to her regular doctor with her (although I took her to the cardiologist and to the emergency room when she needed it, because bowel impactions were becoming a frequent occurrence). She told me that he had said okay based on the diet changes (she got obsessed with curative foods and food-combinations around the same time) she was making. The end of the year were days of things being fine and things not being fine. I noticed a real obsessiveness about random things developing and most of it was harmless, but it, from my viewpoint, was not worth jumping into the fray about.
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January and February of 2010 were snowy, icy, and rocky months. Some days were fine. Others were a disaster. But an interesting – and life-changing for me – thing happened then. Instead of considering Mom the source of the problem, in her more frequent rampages of accusations against and condemnations of me, I began to look deeply at myself and ask God to show me how I was contributing to and making the problem worse. At the same time she was going into the life-changing steps that would change all our lives forever, I also was going into life-changing steps that would examine, test, and change me. For that I am grateful. I’ve always tended to turn inward and look at myself first when things go wrong, but nothing of this magnitude has ever happened before in my life. It was something that I grew and learned from, even though it was sheer hell all the way through the process.
March brought significant changes. Mom started getting dizzy, falling, and passing out. She had now been about four months without medication and doing the diet thing to manage her health. She became even more obsessive about that and about money (she had always been a bit obsessive about it), convinced that everyone, including her doctor and the pharmacies were trying to rip her off. I decided not to fight her on anything.
But when she fell a couple of times – and called me right away and I went over and spent hours with her ensuring she was no worse for the wear or taking her to the emergency room to get checked out or admitted – she began to get a bit more clingy to me. We still had the tense moments, but she was reaching out and I wanted to be there.
April seemed to be the fulcrum. I started noticing the TIA’s while I was around. We went to a church one day, and in between services, while we were eating lunch, she had one and recovered, and as soon as we got back to services, she had another one. I took her home and stayed with her during the afternoon. She did not remember them and thought I was overreacting.
May brought more changes. More paranoia. Less ability to articulate and communicate (I got emails and have seen hand-written documents that make it clear this was another steep and definitive step). The more I tried to help, the more defensive and offensive she would become. The angry outbursts became a fact of life and there was no reasoning with them. She began to take off in the car randomly when I was supposed to pick her up, and that was what began to prod me into stronger action. It was one thing if she died because she was ill. It was another thing if (a) she got in the car and got lost (I already realized that directions and keeping up with the present were a problem) or (b) she killed someone else.
In early June, after another time of just randomly getting in the car to go somewhere when we were supposed to go to church in my car together, I had had enough. I realized she didn’t need to be driving anymore. I called Deb to tell her that Mom had taken off. I got to church and she was there and the car was parked somewhere she would have never normally parked it, and after church when I went down to where she was parked, she said, angrily, she had stopped for gas and she’d hit the passenger side door mirror on something. I looked at it, with the glass completely broken and gone, and prayed that it wasn’t a person she’d hit. I told her I’d follow her home the back way. It was the second time I had done this in almost as many weeks and it was the most nerve-wracking drive of the two. She had no idea how to stay in her lane and was constantly drifting into either on-coming traffic or the left lane of traffic on a four-lane road. I even made her stop at one point and asked if she was okay, but she got so angry and defensive, that I decided to pray us the rest of the way home.
I called Deb back and told her what had happened and we both made the decision she needed to stop driving. We also made the decision that her doctor had to be the one to tell her, because it would never work coming from us.
Deb called the next morning to say she was coming up and asked me to call her doctor and make us an appointment to talk with him. I made the appointment on Monday and we met with him on Tuesday, where he told us that she was showing all the signs of vascular dementia and he’d ordered a CAT scan to confirm it. We told him that he needed to tell her to stop driving. He agreed, based on the history (I had ten pages going in there), and on what he had seen.
On Thursday of that week, with all of us there, he told her that, as a result of chronic small blood vessel ischemia (which produces TIA’s), she had vascular/multi-infarct dementia and it was significant (he showed us the CAT scan and Deb and I could see how much of her brain had been affected), and she needed to stop driving. She was reluctant, but agreed. Of course, as soon as we got home, she started stashing all the car keys in a drawer and told Deb and me we could not take them (we did anyway).
Unless someone has been through this, it seems almost too bizarre to explain. It is bizarre, but usually the person with dementia (and, for Mom, an accompanying diagnosis of Alzheimer’s Disease – one destroys the vessels inside the brain, while the other shrinks, by killing off cells, the outer structure of the brain) can keep it together among people for short periods of time. Mom lost that ability in mid-June, when another dear friend, Martha, came to visit for a few days on her way back from New York, and Mom lost it while we were driving around site-seeing. She lost it, interestingly, at her grandparents’ and aunt’s old home place.
Daddy (and most of the rest of Mom’s paternal side of the family) is buried in a little church graveyard just up the road from the home place in one of the two plots that one of Mom’s favorite cousins, who was like a brother to her, gave them several years before Daddy died. Mom and I had gone there on Memorial Day (after the Sunday in which she told Deb I was stealing from her and I hated her and Deb called me all upset at her, and I unloaded a month’s worth of frustration of which I had to repent pretty quickly), because that is where she wanted to go. After going there, she wanted to go by her grandpa’s house. Hearing her call it that hit my mind as odd, because she had always called it (as we kids did and do) Aunt Tildie’s place until that day.
On that day in the middle of June, we decided to go out to Daddy’s grave. As we were driving down the road to the cemetery, a car behind me was riding me. This is a little and narrow two-lane curvy mountain road that is unforgiving of mistakes, so I got my hackles up about this car riding right on top of me. I contributed to what followed by saying something, out of fear and not anger, about it. To get away from the car, I turned down the road that Aunt Tildie’s house was on. The car turned with me and stayed on top of me. That made me more tense and nervous and I said something about it. To get the car off my tail, I turned into the driveway of Aunt Tildie’s house, and to my consternation, the car turned in after me. That got me even more tense and nervous, because I didn’t know what to expect. I said something about the car following us into the driveway.
Mom went ballistic. I had the car running, not sure what was going to happen next, so all the doors were locked. She started screaming about her grandpa’s house and slamming herself up against the door trying to get out. She became someone I did not even know. She yelled at me and demanded that I let her out of the car. Martha and I both tried to calm her down and tell her it wasn’t a good idea. She grabbed my arm and said “YOU LET ME OUT NOW!” She then started flinging herself harder against the door, screaming at the top of her lungs at me, and instead of letting her hurt herself, I turned off the car, the doors unlocked, and she got out to go and confront the other driver. I prayed. Supposedly it was someone who knew the cousins that now owned it and the driver was fairly calm in spite of Mom’s in-your-face confrontation. Eventually – and frankly I don’t remember how – Mom got back in the car and we left. I decided then that would be the last time we would go back out there as long as Mom was alive (we did go back out with friends from North Carolina a couple of months later, but Mom had been stabilized with medication, and it went off without a hitch).
That really shook me. As Martha and I talked about it (her mother had several devastating strokes after a heart procedure and developed dementia, and Martha, as the sole caretaker for nine years after her father’s death from congestive heart failure, understood it all completely), she said, much to my surprise, that I had handled the whole thing very well. I, on the other hand, believed that if I hadn’t said anything about the driver and had been calmer, Mom wouldn’t have gotten set off. I blamed myself for the escalation. I remember Martha trying to tell me it wasn’t my fault, but I was convinced that it was.
Mom was furious at me the next day, but as had become my habit when I saw that she was on the dark side of the moon, I simply told her I loved her and that I’d see her the next day and left. This had become my way of coping with the insanity. I simply made sure she knew I loved her and left, determined to try again the next day. In between were many tears and many prayers for God to help me change so I didn’t set her off and to help me to know what to do.
By the following day, I believed we had returned to whatever normal was. What I did not know was that Mom had taken off the night before, gotten as far as a Marine recruiting station, went in and accused me of stealing all her money (she had gotten really paranoid about money and I was taking her to the bank every other day so she could check her balances), and demanded that they call the police to arrest me. Instead they called EMS and she spent the night in the hospital undergoing a toxicology screen and psych evaluation. Why, in retrospect, they released her and didn’t send her to the geriatric psychiatric hospital that night is beyond me.
I found out a few days later what had happened. Deb called me on the following Sunday and told me that Mom had told her she spent Saturday night at the hospital. I said it wasn’t true. She suggested that I try to get Mom involuntarily committed because of the delusions (she was seeing Daddy and she was seeing people come in and out of her apartment on a regular basis by then). I called the psychiatric hospital and told them Mom had vascular dementia and they said they couldn’t commit someone just because they had dementia. I called Deb back and told her and she suggested that I just drive Mom down there and commit her. I told her there was no way in the world that Mom would get in a car with me and voluntarily go to be committed to a psychiatric facility. In fact, I said “it will snow in hell first.”
We talked a little more and I decided to go over to Mom’s to check on her. I pulled into the parking lot into an empty spot beside a police car that was running. I don’t how I knew it but something in my gut said “Mom.” She had called 911 to have the police arrest me for stealing her money. One of the nurses where she lived met me at the door and told me. I waited until she and the cop came back up front and I followed him outside and asked if everything was okay. He said it was. When I went back to her apartment with her, I told her I loved her and I wouldn’t do anything to hurt her. She cried and said she knew I did and she was sorry.
The following Wednesday, I picked her up to do our weekly early morning jaunt to the local farmer’s market. She was fine going, but as soon we left, I saw the mood change. She demanded that I take her to the hospital so she could get “some documents.” I asked what hospital and what documents. Well, that set her off and she started yelling at me. I went to the major hospital, let her out at the emergency room door, and asked her if she wanted me to come in with her. She said “No!” and slammed the door shut. I figured she had just imagined something and they’d turn her around and send her right back out, so I sat there with the car running for about 15 minutes and then decided to go park.
A million thoughts were going through my head, but I prayed for calm. I had been sitting there in the heat for about 30 minutes, with the windows down, when I saw someone who looked like a security guard walking out from the ER door toward the parking lot. Something in my gut told me that she was looking for me. She headed straight to the car and asked “Did you bring an elderly lady in here?” Inward groan and “yes, that’s my mom,” and she asked me to come with her. I had no idea what I was walking into so my trepidation level was pretty high.
The guard took me back to the intake room and the circus got rolling. I guess apprehension heightens your senses because I was aware that all the desks were occupied with ER patients and, perhaps to sort of deal with Mom sitting at a desk with an intake nurse with several people around, I intuitively tuned in to the conversations around. On my right, a younger guy was being asked whether he used drugs, and at first he said “no,” then he said “well, I smoked some pot last night. Does that count?” That’s the conversation I remember as I was thinking I was in some kind of surreal dream that I would wake up from because my mind was just having a hard time taking the moment in.
Mom was sitting down at the desk and I could tell she was livid. The intake nurse told me that they weren’t sure why she was there, and although her blood pressure was extremely high, they really didn’t know what they could do for her. I told her I didn’t know either, but that Mom had told me she needed to come in and get documentation. The intake nurse asked me “For what?” I said I didn’t know. The intake nurse looked at her computer and said the last admittance they had for Mom was June 17.
All of the sudden the pieces clicked together in my brain that this was the “night” she had told Deb about that I thought was a delusion. I asked what time, why, and how long. When I got the answer, I asked Mom what she wanted to do.
She refused to look at me, but loudly announced to the entire intake room the following: “Okay, you can just take all my money, because that’s what you want. You planned this all along. I hope you are happy!” I tried to be rational and she further went on to scream that I was stealing all her money and that if I wanted it that badly, I could have it. She also said that I hated her and wanted her out the way. I was speechless and embarrassed. I didn’t even respond to her accusations, but said quietly, “Mom, we need to go.”
After saying this several times, she got up, turn on her heels, and stomped out ahead of me. I followed quickly and she stopped outside the emergency room door and started yelling at me again, telling me I could take all her money and all she needed was $1000 to fly to South America. (All this time, my mind is reeling because I have no idea what to do.) I told her we needed to get in the car and leave. She refused to go the car with me and started yelling me about her money again. (Just to clarify, she had set up a living trust that only reverted to me at her death or if she became mentally incompetent. At that time, I had no access to any of her money. That Friday, though, I called the attorney who set up the trust, explained what was going on, and had him do the legal paperwork to turn the trust over to me.)
We stood outside that door for an hour, with her yelling at me, making crazy statements, and accusing me of stealing from her. All I did was try to explain to her that we could not stay there all day and we needed to get in the car and go home.
She finally told me to take her to the bank (that was after telling me to take her to the library so she could find a job). We got in the car and I drove her to the bank, which had become almost a daily ritual by this point. She was in there a while, but she came back out with a piece of paper with all her account balances on it. I took her home, her still seething, and told her the same thing I said every time we had one of these: “I love you and I’ll see you tomorrow.” She told me not to tell her I loved her because it wasn’t true and walked inside.
I started sobbing and praying on the way home asking God for help. And things kind of calmed down for a week or so. Mom was seeing Daddy, people folding towels in her room, and young boy and girl walking into her room every she left and stealing things (things were constantly disappearing and I’d have to search high and low to find them), but she wasn’t angry at me.
Elaine came into town the Wednesday evening before July 4th weekend. She took a flight, then rented a car, so she was running late to meet us at Mom’s for dinner. I went to Mom’s to wait around 5 in the afternoon and Mom was in her nightgown, in bed, sleeping. I thought it was odd, but I didn’t wake her until Elaine called me to tell me she was almost there. We had an appointment with a psychologist that Mom’s doctor had set up right after the diagnosis the next day in the morning and then an appointment with her doctor that afternoon.
Elaine didn’t see much of a problem the whole weekend. The psychologist, after talking with Mom for a while and then me, told her that she needed to trust me to help her with financial matters, and Elaine didn’t understand why. The appointment with her doctor went about the same way for Elaine. She’s been around Mom very little since Daddy died and because she’s lives on the left coast, getting back here has been limited to three trips in the last 12 1/2 years. So, she’s pretty much out of the loop in the day-to-day. We talk a few times a year, so she just doesn’t know what’s going on. Elaine left on Saturday.
On Sunday, I took biscuits and coffee over to Mom’s for breakfast. Things initially went well, but at some point she got agitated and then went into a full rage and started threatening me with a knife (just before that she’d thrown a small toolbox at me). That was my last straw. I told her that she needed to sit down and calm down. I remember saying “you are out of control!” to her. She threatened me again and I took the knife away and ordered her to sit down and be quiet. She did, not happily, but she did. I got her calmed down and I left. That gave me great pause.
I went back the next morning and we had a pretty good day. But by Tuesday, the tide was turning again. Nothing over the top, but I could tell we were back into dangerous territory. By Wednesday, it was a strong storm. By Thursday, it was full-blown. She banished me from ever seeing her again and in the afternoon began stalker-calling Deb and accusing both Deb and me of conspiring against her and stealing all her money. Deb called me and she was shaken.
I went over early Friday morning and when I got to her apartment, the door was slightly ajar, with a big plastic bin sitting in front of it, and her sitting in a chair across the room watching the door. It reminded me of someone sitting on a porch with a shotgun waiting for intruders. I asked what was going on and she accused me of stealing one of her notebooks (which I found stashed behind a dresser after she was hospitalized) and she told me I needed to get out of there before the cops came to arrest me. I searched that room from top to bottom (except behind the dresser!) looking for that notebook. I went outside and called Deb and told her what was happening and to see if she had any suggestions on where to look and she suggested even more bizarre places to look.
I couldn’t find it and Mom kept getting angrier and telling me to leave if I didn’t want to get arrested. I left, and she started stalker-calling Deb with the same statement and more accusations. I dismissed the whole arrest thing until I went to talk to the Director of Residents and she informed me that Adult Protective Services was doing an investigation to see if I was stealing money from Mom because she had told her that I was stealing her money. Then I realized the seriousness of the whole thing. I told her I would be back that afternoon with a full financial record for Mom that would prove I hadn’t touched her money.
I went home, called our minister, and tearfully told him what was going on from the diagnosis since. I told him I felt like he needed to know in case I got arrested. That was divine intervention. No doubt in my mind. Mom, meanwhile, was alternately calling Deb and me to give us grief. Deb had called me to tell me what she was doing and we agreed that neither of us would answer. I got the records together and took them back to the Director of Residents, who took one look and said “This is a closed matter. What this tells me is you’ve done a great job of helping your mom stay on a budget because there is very little difference between the amount she came in her with and what she has now. I’ll take care of Adult Protective Services.”
I went back home, called Deb and told her what had transpired, and then finished the work I had to do that afternoon. Mom continued to call and I ignored it until about 5 pm when I finally picked up the phone. She had burned herself out and she was very quiet and very docile. I told her I loved her and I’d see her in the morning.
The next morning my mom was back. It was as if we’d erased 10 or 15 years. She was happy, polite, loving, and a joy to be around. I was shocked. But when I went back later that afternoon to pick her up for church, I saw that the dark cloud had returned. I didn’t say a word on the way to church and we sat separately – she at the front so she could hear and me in my usual place in the back. The tirade began as soon as we began driving home and she worked herself up in a full-blown rage. One of the things I learned along the way was not to fuel the fire by answering. I learned to practice silence. I didn’t answer her this time either and it made her angrier, but I refused to do it because I knew it would only make things worse. I let her off at her place and said “I love you and I’ll see you in the morning.” She said “Quit saying you love me because it’s not true!,” slammed the car door and stalked into her place.
And I went home. Mind racing. Stomach churning. Realizing that this was all so far out of control and not knowing what to do. I paced and I prayed until my phone rang at 10:30 that night. Mom had called some fellow church members and wanted them to have me arrested for stealing. The wife talked with me for almost two hours as I spelled out what had been going on and her diagnosis and assured me that she understood (which I have no doubt of) and that she thought her husband had gotten Mom calmed down. During our conversation, our minister had called and told me that the same two people had called him about Mom and he told them to call me and that if I needed him to come down to let him know.
I spent the rest of the night pacing and praying. I told God that this was bigger than me and He needed to help me because I just didn’t know what to do. I remember standing outside in the wee hours of the morning on my patio, with my hands outstretched, pleading with God to take over and take care of it.
I was on my second cup of coffee when the phone rang at 7:15 on Sunday morning. I just knew it had something to do with Mom. When I answered, the woman on the other end identified herself as a counselor at the local mental health facility. She told me that Mom had called EMS around 3 am and they’d transported her to the emergency room and the decision had been made to involuntarily commit her to a geriatric psychiatric hospital. She asked me if that was okay. My answer was “Absolutely.” I called Deb and told her what was going on and she agreed that it was the only option at this point.
Later that day, after I’d cleaned her apartment, found the notebook, and gotten together the clothes the lady told me to bring, I went to the hospital and changed the commitment from involuntary from the hospital to voluntary by me. The hospital, the next two weeks are for another post. Let me suffice it to say that nothing changes you like an experience like that. But to recount that here is more than I have in me right now as this has taken a lot out of me already.
The final diagnosis, which we’re still living with today, was mid to late-stage vascular dementia and Alzheimer’s Disease. Today, with an effective combination of psychiatric medications to stabilize her moods and anxiety, Mom is living in a memory-care assisted living facility here in town. Though I see the mental decline on a daily basis and evidence of mental filters disappearing and the continued presence at times of delusions and hallucinations, I am thankful that the extreme emotional roller coaster, at least for now, is over.
It may come back if something else doesn’t take her life first (the health problems continue). I keep wondering where you go after you’ve gotten to the dark side of the moon. I hope neither of us has to find out.