Alzheimer's degrades a person slowly over a period of years. When a downturn comes, symptoms can escalate suddenly. As a dementia family caregiver, you need to know what that downturn could look like. Knowing can help you survive.
Alzheimer's degrades a person slowly over a period of years. When a downturn comes, symptoms can escalate suddenly. As a dementia family caregiver, you need to know what that downturn could look like. Knowing can help you survive.
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MODIFIED TRANSCRIPT for EPISODE 8 : The Falls and the Downturn
During the month of May and into the first week of June, my husband, age 82, fell 11 times. His legs, once strong enough to thru-hike the AT at the age of 60, now turn to wet spaghetti in an instant. In all of those falls or collapses he got bruised. His skin is so thin now. It doesn’t take much. In one fall, he cut his head and his arm. In another, he could have died. Alzheimer’s degrades a person slowly, over years, or the downturn can escalate suddenly. You need to know what that downturn could look like. …and why you might question what you’re seeing.
The falls and the downturn …that’s what this episode, #8, is all about.
On May 6, the week before the first fall, Dick experienced another first. I was at the Cox Public Access television studio trying to learn how to edit a two-camera shoot for “Page 1,” a show about writing that I have on public access and on YouTube. Pamela, the CNA who helps me two mornings a week, was caring for Dick. As soon as I walked back into the house I smelled bleach. And I knew…I just knew what had happened. Pamela stood there with paper towels in her hand. She said Dick had been sitting in his recliner. He stood up suddenly, dropped his pants, and defecated.
The first fall came six days later on May 12. It was around 9 pm. Dick had been asleep for a few hours. I heard him stir so I walked in to check on him. He was walking toward the bathroom. He seemed fine. Half-way across the room, he swayed, and toppled forward, flat on his face on the hardwood floor. He bruised his nose, his cheek. He cut his head. He cut his arm. Both cuts drew blood but were minor. I keep first-aid items in easy reach in both the kitchen and in our bathroom. I cleaned the cuts, applied antibiotic ointment, and good-sized BandAids. The bleeding stopped right away.
Then came the challenge of getting him up off the floor. I’m 5-feet tall. I can’t lift him on my own, not even with a lift belt, which I have next to the bed.
I pulled my cell phone from my pocket to call my neighbors Mark and Angel and realized I didn’t have their numbers. So I raced down the stairs, out the front door, and to their unit, two doors down.
They came in a flash. Angel is from Puerto Rico. His medium height, slender build, and olive skin tone are similar to that of Dick’s younger brother, Albie – when the brothers were in their twenties. Angel’s smile is open and friendly, his energy engaging – just like Albie’s. Albie died about 20 years ago. I think that when Dick see’s Angel, he sees Albie.
So, when Angel walked into the bedroom and saw Dick on the floor, he gave him a big smile and said, “Hey, my friend! Don’t worry. We’re here to help you.”
A few minutes later, Angel and Mark got Dick up and back into bed.
Six days later, on May 18, Dick opened the glass door of our big grandfather clock and yanked off one of the three heavy weights. I’ve since locked the glass door.
That night, he fell again - #2 … It was more of a drop, a collapse. His legs just turned to cooked spaghetti. He didn’t hit anything. I waited about 10 minutes for the feeling in his legs to return. That’s what usually happens. The feeling didn’t come back. Over these last few years, I’ve learned that it’s really dangerous for an elderly person to lie on the floor – something about blood pooling. I don’t remember all the details. I just knew I had to get my husband up.
Mark and Angel weren’t home. So I called the police dispatch desk. That’s not 911. No. It’s the number the police told me to call if I ever needed a “lift assist.”
A few minutes later, a fire truck pulled up in front of my door. Three EMTs came in, went upstairs. When Dick collapsed, he got “wedged” between the bed and the hope chest. I couldn’t get him to roll over on his side, or brace himself against the bed, some of the movements that have worked in the past. The EMTs got him up.
Three days later, May 21, Dick fell again. Another collapse. #3. I was in the kitchen with my contractor, Mike. We were talking about some much-needed repairs and a project that had been on the back burner for several years: I wanted a little podcast studio in the basement, a space treated for sound, a space where I could safely set up equipment and not worry that Dick would bump into it.
Dick walked in and stood next to me by the sink. Suddenly, his legs turned to spaghetti. He collapsed against me. I braced myself against the counter. Mike jumped up from his chair, grabbed it, and positioned it right behind Dick so he could sit down safely. Getting Dick to sit down took a while. It always does. Eventually, things calmed down. No injuries.
Fall #4 came the next day, Sunday, May 22. I was upstairs in my office, the room next to our bedroom. It was late afternoon, 4:10 to be exact. I’d been taking a class on Zoom. Dick was downstairs asleep in his recliner. … I had been wearing headphones. I never heard the cluster of sleigh bells hanging on the front door, my make-shift alarm system to alert me if Dick goes outside.
I headed downstairs. Halfway down, I could see that the front door was unlocked. My heart lurched. As I rushed outside, I slapped my hand against the pocket of my pants to make sure I had my phone.
There he was. In the center island of our condominium complex, sitting on a wooden pallet that belongs to the construction company replacing the crumbling foundations of our six buildings.
On the ground next to the pallet were several steel beams covered with a tarp. Dick had taken off his shoes and socks and was pulling the tarp up over his head as though setting up a tent.
You can imagine how relieved I felt to see that he wasn’t hurt. That didn’t last long. He didn’t want to leave the “tent.” He didn’t want to put his shoes back on. It took more than a few minutes to convince him that he wasn’t on the Appalachian Trail and that we had to go home.
Eventually, he stood up. Arm-in-arm, we walked a few yards and then, suddenly – you guessed it – his legs turned to spaghetti. I faced him and scooped my arms under his so I could break his fall, keep him from hitting his head, but he still went down, right on the driveway that leads to the dumpster.
There was nothing for either of us to brace against. I wasn’t comfortable letting him lay there until the sensation in his legs returned. I never know how long that will take. Someone walking to the dumpster wouldn’t pose a problem but someone driving a car to the dumpster wouldn’t expect to see a body on the driveway.
I looked around. There aren’t many people living here right now. Only two of our six buildings have been repaired. The other four buildings are still up in the air, the owners living elsewhere. I could see Mark and Angel’s driveway. It was empty. They weren’t home.
I took out my phone and called police dispatch for a lift-assist. I explained where we were, outside on the ground.
The fire truck and 3 EMTs were there in a few minutes. They got Dick to his feet but he was still wobbly. My next-door neighbor Carol appeared. She talked to Dick while I ran back home for the walker.
This walker is the kind that has a nice, padded seat. The EMTs convinced Dick to sit down. They pulled the walker, got him home, up the step, inside, and into his recliner. They asked if I wanted Dick to go to the ER. I did not. I knew he hadn’t landed hard. He hadn’t hit his head.
The next day, I ordered a lightweight, folding transport chair. It’s like a wheelchair but without the big wheels on the side. It’s made for the person pushing the chair, not the person IN the chair.
The next day, May 24, he collapsed again. This time, we were both in the living room. This time, he melted between two chairs. I helped him turn so he could brace against one of the chairs. A few minutes later, he was strong enough to kneel. Then he pulled himself up. That was fall #5. Over the next few days, my husband slept a lot – 12 hours a day, 15 hours, 22 hours.
Fall #6 came exactly one week later, on May 31. For the last few months, he’d been suffering on and off with constipation. That’s not uncommon with Alzheimer’s. In the same way that the disease makes his legs forget how to walk, it makes his bowels forget how to …move.
Unlike with other bouts of constipation, this time Dick was in pain. I’d been giving him laxatives and stool softeners. I mixed powdered fiber in his juice. I gave him oatmeal and made pancakes with coconut milk. Nothing worked. That morning, I thought a nice, hot shower would relax his muscles and his body might remember what to do.
We have an old-fashioned shower in a tub, not free-standing. We have grip bars on the wall of the shower and on the side of the tub. He got into the tub just fine. He got out just fine. He was standing on a rug, drying off, when I turned around to get the clean clothes I had placed on the bed.
In that moment… spaghetti legs. Everything happened so fast, beginning with the look of terror in his eyes. I grabbed him under his arms and kept him from hitting his head against anything, but he went down. I covered him with a blanket and put a pillow under his head. He was lying on a cold tile floor. That increased the danger of blood pooling. So for the third time that month, I called for a lift-assist.
The fire truck pulled up. The EMTs came upstairs. Again, they got Dick up and safely back into bed. Did I want him to go to the hospital? No. But then one of the EMTs pointed out that if my husband went to the hospital they could give him an emema to relieve the pain of the constipation and check to see if there was a blockage of any kind in his intestines. Of course! Yes, I said. Let’s go.
They called for an ambulance. It came. The crew carried Dick down the stairs in a chair. I was ready to grab my purse and follow behind in my car. That’s when I got some valuable advice. … If you remember nothing from this episode, remember these two things:
For several weeks, I’d been talking with Amanda, the social worker at the neurologist’s office, about palliative care for my husband. That phone call I made to the neurologist’s office – that was to Amanda. I got her voicemail. My heart sank.
But in the few minutes it took me to gather my thoughts, she texted me. She had already called the ER, confirmed that Dick was a patient of the neurology office, and left instructions that when he was released it should be to the palliative care team of the Visiting Nurses Association. I felt so much better! I grabbed my purse and drove to the ER.
The waiting room was full. As soon as I got to one of the three registration windows, I gave them my name and said my husband had been brought in by ambulance. All I had to do was check a form and slap on a visitors’ pass. In barely a minute, I was ushered into the treatment area.
Dick was lying on a bed just outside one of the rooms. They were all full. We were relieved to see each other.
An hour or so later, Dick said he had to pee. One of the nurses helped him off the bed and into a nearby restroom. A few moments later, the nurse called for assistance. Another nurse came..and then they called for housekeeping. Dick’s bowels finally remembered what to do. Six days of constipation …all over the bathroom floor.
X-rays came next. The ER doctor wanted to see if Dick had a blockage of some kind. The x-rays proved negative. But the process of getting them was pure frustration. There were five techs in the room, most of them fairly young. I don’t know how many dementia patients they had x-rayed before but, as you and I know, you can’t say to a person with late-stage Alzheimer’s, “Deep breath. Stand still. Don’t move.”
Later, back in the ER bed. Dick fought with the nurse who had to draw blood. In a stern voice I’d never heard from him, he said, “You’re a bad girl.”
He got really angry with the nurse who had to take his blood pressure. I felt sorry for her. I felt sorry for my husband, too. He had so many bruises, there was no pain-free area to place the cuff.
Adding to the challenges of the day, Dick kept trying to get out of the bed. Finally, the nurse tilted the bed so that Dick’s head was lower than his body. That didn’t stop him. He pulled himself up and swung his legs over the railing. He might have gotten out if it hadn’t been for an orderly – a mountain of muscles – who calmly walked over, scooped Dick up in his arms like he was a toddler and said, “Stay in bed.” And with that, laid him back down.
We were there a little over four hours when a nurse came over to say the blood work and x-rays were clear. And, obviously, Dick wasn’t constipated anymore. We could go home.
The next day, we had our first visit with a nurse from the Visiting Nurses Association. Her name is Erin. We talked for about 90 minutes while she observed Dick, checked his vital signs, measured his right calf and the upper portion of his right arm. She checked for broken skin.
We talked about end-of-life documents. I showed her the originals, including Dick’s medical directive and the document that gives me Dick’s power of attorney. She scanned the documents into her computer.
We talked about DNR and DNI orders – Do Not Resuscitate. Do Not Intubate. Years ago, when Dick understood what was going on, he and I had met with our attorney to have that same conversation. We had both agreed that should we ever wind up in a situation like Dick is in now, where there is no hope of recovery, and then have a heart attack or some other event that renders us unconscious, or our health degrades to where we’re unable to eat, we wouldn’t want to be resuscitated or intubated. Now, sitting in the living room with Erin, the hypothetical took a giant step closer to reality. I affirmed that earlier decision.
Erin said she feels the best way she can help her families is to be straight with them. I agreed. I didn’t tell her that until Alzheimer’s took hold, Dick always called me “Straight Shooter,” or “Straight” for short. He also called me his best girl. Still does.
So, Erin looked right at me and asked, “Do you have a funeral plan?”
Wow. Okay, I didn’t expect that…and it took me a minute to answer. Nothing formal, I told her. I mean, I do know the funeral home I will use. As a Life-Cycle celebrant, I know the kind of service I want. I have a dear friend and colleague I’d ask to perform the service. I know Dick wants to be buried, not cremated. I do have a collection of photos and I’ve started a playlist of music. I have not drafted an obituary or made a list of people to call right away.
Erin said that based on her observations, the end might not come for a year, but it could be months. It could be weeks. Weeks? That’s crazy! Dick was still walking, still eating, feeding himself most of the time.
Erin explained that things can change really fast with Alzheimer’s. I remembered what one of the neurology nurses told me.
I got the picture.
The registered nurse, Erin, needed my signature on the Do-Not-Resuscitate / Do-Not-Intubate form. I picked up my pen and signed my name. My hand held steady. Inside, I restrained an earthquake.
A second nurse, Togor, an LPN, came on Friday, June 3, to check on Dick. She asked if I would be willing to see a chaplain – a nondenominational woman who is not so much a religious person but a spiritual person. Togor thought it would be good for me to talk with her. I said sure. In contrast to my usual posture about such things, I’m open to receiving help. I know without reservation that I can’t take care of my husband and myself alone.
Dick had been particularly restless that day, hopping up and down from his recliner, pacing, walking out the front door several times. Pamela, the CNA who is helping me two mornings a week, kept up with him. With all the construction going on here, it’s not safe for Dick to be outside even with someone.
He had fall #7 later that day – a “simple” collapse against a chair. He didn’t wind up on the floor.
Three days later, June 6, he was sitting in the kitchen, looking out the window at the meadow. He was noticeably calm and quiet. He talked about all the children playing outside. There were no children – no people of any age – in the meadow. He pointed to where he saw his parents. They’ve been dead for more than 40 years. I walked over and gave him a bowl of yogurt and granola. He looked into my eyes and said simply, serenely, “I’m leaving now.” I mirrored his tone and said, “Okay. I understand. It’ll be okay.”
The next day, June 7, we had an in-person appointment with the neurologist. I asked my friend and neighbor Helen to come with me. She has a grown son who is nonverbal and has special needs. She’s also familiar with medical equipment.
We put the transport chair in the back of my Forester. Then came the 10-minute battle of getting Dick into the car. Finally, he sat comfortably in the back seat with his seatbelt fastened. I can’t let him sit in the front seat anymore. More than once, he has reached out to grab the steering wheel.
Our appointment was at 3:05. We pulled into the parking lot, into a handicapped spot, at 2:40. Plenty of time to get into the building. Wrong.
Helen and I got out of the car, took out the transport chair. Twenty minutes later, I called the receptionist and told her what was going on. She sent two aides with another wheelchair. They couldn’t get him to sit down either. So, they got on either side of him, took his arms, and walked him in. Helen and I followed, each of us pushing a chair.
Dick’s blood pressure often runs low. That day, it was 84 over 58. I have a notebook I take with me to all his appointments so I can jot these details down.
The neurologist and the nurse asked questions, made observations, took notes. These in-person appointments let the medical professionals observe Dick for themselves. They can assess his decline more accurately.
We talked about the DNR-DNI form I had signed in the presence of Erin, the visiting nurse from the VNA. The neurologist asked if I understood the ramifications – that should Dick experience an event that caused his heart to stop, he would not be resuscitated. And that should he reach the point where he could no longer eat, he would not be fed through a tube down his throat. I said that at the stage my husband is in, I thought resuscitation or intubation would be cruel. Both the neurologist and the nurse practitioner agreed.
I repeated what Erin, the visiting nurse, had told me – that my husband could stay like this for a year, but that death could come in a few months, a few weeks. The neurologist exchanged a look with the nurse, then turned to me and said, “We agree.”
The neurologist said she would proceed to order the official DNR-DNI bracelet Dick would need to wear.
We also agreed that future appointments should be virtual. The ordeal of getting my husband to the office was stressful on all of us, especially Dick. And, well, the neurologist saw what she needed to see.
The two aides helped me get Dick back to the car. My neighbor Helen helped me get him buckled in. I drove home without incident.
Lisa, the social worker, came the next day. We talked about scheduling an aid to come twice a week to help Dick shave and get a shower. We talked about how things might look in the near future. We talked about converting the dining room into a bedroom so my husband could live on one floor and not have to take the stairs. We talked about ways to block the stairs.
The next morning, Friday, June 10, the CNA Pamela and the VNA nurse Togor were both here when Dick’s legs turned to spaghetti. He collapsed. #8. They caught him, each bracing him under an arm. While walking him to his chair, Pamela commented that this behavior was a first. I had to clarify. No. The sudden loss of connection to his legs has been going on since last summer. It happened a lot during the five months we lived with our daughter and her family in Rhode Island. But it was the first time Pamela had seen it. The behavior usually happened in the late afternoon and evening. This was the first time it happened so early in the day.
That evening, Dick got tired early. I gave him his meds and put him to bed around 6:30 pm. It was a beautiful, warm evening. I had all the windows open. Dick fell asleep instantly.
I knew that several of my neighbors had gathered on the deck next door. Several of them are living elsewhere while the crumbling foundations of their buildings are being replaced, just as my building was last year. I hadn’t seen some of these neighbors in a while. I walked over to say hello.
Being with my neighbors, telling stories, laughing, nibbling on cheese, sipping wine – it restored my spirit. I stayed for about thirty minutes, far longer than I intended. I might have stayed even longer… but I heard my husband scream.
Everyone on the deck heard it. The heavy thud came first, then the agonizing screams for help. I raced home, up onto the deck, through the back door, into the kitchen. No sign of him. Through the dining room, the living room. He wasn’t there either. I turned to go up the stairs. That’s when I saw him. I think my heart stopped.
He was on the landing at the top of the wooden stairs, lying on his back, his head, neck, and shoulders hanging down the first two steps. He was clinging with one hand to the corner of a wall. One false move and he would slide down, head first. #9.
I ran up, laid face down on the stairs, and ducked my head, neck, and shoulders underneath Dick, lifting him enough to take the pressure off. Now, neither of us could move.
Just like in a superhero movie, the three men who had been sitting on my neighbor’s deck with their significant others appeared behind me.
I knew Rick and Vic. The third, Paul, I had met just that night. I didn’t know it then, but Paul had experience in this area. He supported Dick so I could get up. Then he directed the other two men into position.
Paul asked if I had a transfer belt. I did. I kept what looked like a long, canvas seat belt with a buckle coiled beside the bed. I grabbed it and gave it to Paul.
My daughter had convinced me to purchase the belt a year or two ago. I had never used it. I had never seen it used. I can’t tell you how Paul did it, but in less than a minute, he had the belt around my husband’s waist. As Paul pulled on the belt from the front, facing Dick, the other two men lifted my husband from behind. Quickly, calmly, compassionately, the three men helped my husband into bed. And then they left.
Dick went right to sleep. I took a minute to settle my own nerves and then I called the Visiting Nurses. They had instructed me to call whenever there was a change in behavior, and certainly to call if he fell again.
The operator on the 24/7 line said the nurse on call, Linda, would get in touch with me. A few minutes later, Linda called. I explained what had happened. She said she’d be over shortly to check him out.
I went downstairs and unlocked the front door. Then I went out back onto my deck. My neighbors were still on Carol’s deck nextdoor. I told them I had called the on-call nurse and that she would be over shortly to make sure Dick was really okay. I thanked them all again, went inside, locked the back door and went upstairs.
There was my husband, standing in the doorway between our bedroom and the top of the stairs.
“Help me,” he said. I saw the fear in his eyes. I saw the trembling in his legs. Any moment now, they would turn to spaghetti.
I scooped him under the arms. As I did, he collapsed against me. I fell back against a bookcase. There was no way I could hold him up and, unlike other times, I didn’t want to ease him to the floor. We were too close to the stairs. #10.
Fortunately, the bedroom windows were wide open. The deck was right underneath. I screamed for help!
I heard Vic shout, “We’re coming!” That’s when I remembered I had locked the backdoor.
A few minutes later, I heard the front door open. I heard the men come up the stairs. Paul stood behind Dick, held him at the waist, promising not to let Dick fall. Meanwhile, Vic and Rick pried Dick’s fingers off my arms. Only then did I release my grip on Dick’s shoulders.
Once again, these men helped Dick get into bed. As I followed them downstairs, I heard voices. A lot of voices. All the people who had been on Carol’s deck were now in my living room. I looked to her for an explanation. She smiled and said, “We’re not going anywhere until the nurse gets here.” I had no words!
When Mark and Angel came home, they joined us. Angel is the man Dick thinks is his younger brother, Albie. Mark stayed outside to flag down the nurse.
The nurse, Linda, came. She checked my husband’s vital signs. They were okay. She checked for cuts, for broken bones, for signs of a concussion. Nothing. She said I could give him the other half of the sleeping pill I give him every night. I did.
The nurse went home. My neighbors all went home. I went to the kitchen to make sure I had put everything away. That’s where I was when I heard Dick scream.
I ran up the stairs. He was lying on his back, on the floor of the bathroom at the top of the stairs. #11. I had my phone in my pocket. I called Mark and Angel. They came right over and helped me get Dick up and back into bed. They’d had a long day and went right home.
About ten minutes later, Dick got up, stood next to the bed and urinated on the floor. He was agitated. I couldn’t control him. He got himself into bed, on top of a big soaking pad, a wet soaking pad.
I grabbed Murphy’s Oil Soap, laundry soap, and a roll of paper towels. I worked as fast as I could to control the worst of it. Then I grabbed my home and hit redial.
Mark and Angel came back. I couldn't let Dick sleep on a wet pad and I couldn’t move him by myself. Plus, I didn’t want the bedding or the mattress to get wet.
By this time, Dick was restless. The men managed to turn him on his side, just enough for me to pull the soaking pad from beneath his body. A stroke of luck – the sheets were still dry.
I pulled a brand new pad from the dresser drawer. Instead of placing it to hold the length of my husband’s body, we positioned it horizontally so it would act like a sling and make it easier to pull him into position. Understand, I needed Dick to sleep on his side of the bed because that’s where the safety rail is. It’s the only thing that keeps him from falling off the side, something he’s done several times in the past.
Dick wanted nothing to do with being rolled over again. But Mark and Angel were able to talk to him in a way that calmed him.
When they went back home – again – I steamed the floor where Dick had urinated and tried again to wash the dust ruffle.
By this point, I was exhausted. I was depleted. And I was grateful. The night could have ended much worse.
Dick woke up at 4:05 a.m. I held his hands and walked him into the bathroom. He urinated in the toilet, with minimal misses. And went right back to bed. …Yes, the night could have ended much worse.
Ordinarily, I wouldn’t give you this day-by-day, fall-by-fall account. But the scope and volume of changes in my husband’s health increased noticeably in May. You need to know what that decline could look like. Not that it necessarily will. Alzheimer’s patients are all different…because people are different.
I’ll tell you more of what happened on the next episode. It wasn’t over. There were more falls. There was another trip to the ER. One experience was particularly difficult. Later, I heard one ER nurse warn another, “Watch out for him. He’s a fighter.” More tough decisions to be made.