Alzheimer’s in the Philippines…
Dementia and Living Alone at Home
I was crying outside on the back steps of my Mother’s apartment building over twenty years ago. A neighbor had called, concerned that Mom was wandering around alone in the dark. I had no idea what was wrong with my Mother, other than the fact that she had always been a little difficult, but her behavior was getting to me, so I’d left my husband inside her apartment with everyone else, trying to calm things down. Mom, now in her 80s, had been living alone for several years and had taken good care of herself. My sisters and I took her shopping, to the doctor, and other places. We ignored her getting her medications mixed up, occasional leaking gas from burners that weren’t fully turned off, and problems with her checkbook. She was properly dressed, cooking her own meals, eating well, bathing on a regular basis, doing laundry, house cleaning, and being friendly with her neighbors—everything was fine. True, she’d started calling more frequently; I assumed she was trying to reach out, so we’d talk, I’d drive over, find a reason to go to the store, and just be together. It would be a long time before it occurred to me that her elderly mother had done some of the same things a generation ago, on the other side of the world, and I had often heard that whatever my aunts tried to do to make things better always failed. That night, I knew I could never leave Mom alone at home again, so we brought her home.
Mom had gone to live with my oldest sister years before after Dad died, but it didn’t work out. So she came to live with me, the youngest; she couldn’t live with the middle sister. She was a good mother; we were never neglected, hungry, or cold, and we were never abused. She was the ultimate mother tiger, always protecting us, always on our side, and more understanding than we gave her credit for at the time.
But, but, but—in our marital homes, she was impossible to live with. Our house was small, with only one bathroom and three small bedrooms. I wanted to put our two kids in the same room and give Mom her own room, but she insisted on sleeping on the couch because she didn’t want to wake anyone up, which obviously woke us all up. When my husband got home from work, he wanted to take off his shoes, crash on the couch with a beer, and watch whatever exhausted men watch on TV in our front room, but Mom was eager to see Lawrence Walk—or she’d stand in the doorway holding her blankets and pillow, wearing her hairnet, ready to sleep for the night—and where were we supposed to go? “Betty Lee, where are the children?” she was asked all day. Is it cold outside? Do they have sweaters? Are you not going to do the dishes? “You require new curtains.” This, that, and the other. My husband kept coming home later and later, which confused the kids. She would not, or perhaps could not, fit in with our family.
She had to have her shoulder blade bandaged and her arm in a sling to keep it from moving after she cracked it. But she kept undoing everything, attempting to use her arm while allowing it to hang loose. I wrapped it all back up again and again. Finally, I called the doctor and told him she needed to be hospitalized because I couldn’t control her and was afraid she’d hurt herself badly. Just keep her quiet and don’t let her use the arm, they said. I’M TRYING, BUT I CAN’T MANAGE HER! As a result, she was hospitalized.
As is often the case, good intentions do not always translate into action. We had our first and only screaming match. My marriage, my family, or letting her run things were all on the line. We found her a bright, sunny apartment about a mile away from my house. Mom eventually came to like her little nest, her independence, and for several years everything went well—until the neighbor’s phone call the night I cried.
My sisters and I usually took turns taking care of Mom and her needs. But they’d been out of town, leaving me to care for her on my own. When they returned, I told them that I needed to opt out for my own safety and that of my small family. It was not healthy for anyone to be sitting in the dark, crying out of sadness and frustration with no end in sight. My sisters were getting older and dealing with their own serious medical issues. Things were only going to get worse. We chose an excellent nearby care facility for her. To avoid misunderstandings, we wrote a simple agreement about how we would handle her finances and pay for everything. She fought it again; how could we abandon her? But she soon discovered that she enjoyed being there as well. We took her out to lunch or shopping and saw her just as much as before. It appeared that one Mother could care for three children, but three children could not, no matter how hard they tried, personally care for one Mother.
Many caregivers are alone, with no help and insufficient resources. Some people refuse to pay for caregiving; others may live a long distance away or be unconcerned about the needs of the caregiver and the patient. However, the most difficult obstacle is frequently an elderly person who is unwilling to cooperate. They hire someone to work in the house, and then they fire them. Explain that it is unsafe for them to live alone, and they respond that they are fine, that they have always taken care of themselves and will continue to do so. They don’t want to leave their home (neither do I), they don’t have enough money for a caregiver or a care facility, they claim their neighbors look after them, and so on. They are fighting to keep what they have of their personal lives, to maintain their independence—and who can blame them? However, it drives everyone who feels responsible for them insane, as they wait for some sort of disaster to occur. How do you know when someone should not be left alone at home? It’s rarely easy to tell, and even more difficult to intervene.
Contact Adult Protective Services, the Alzheimer’s Association, and other caregiver and dementia support organizations from your phone book or computer for assistance with home alone issues. Find geriatric care managers, senior centers, senior nutrition, an aging department or administration, mental health, care and aid for the aging, a council on aging, health services, elder abuse—anything like that in the county where your loved one lives. It will take time and false leads, but if you keep asking everywhere and everyone, you will eventually get some help.
Dementia and Living Alone at Home
After describing my family’s problems with my elderly mother’s dementia and the resulting trauma, there is little that can be done to avoid it. The best anyone can hope for is to recognize the events and deal with them as rationally as possible.
We’re all living longer and longer lives, and few would have it any other way. However, as we age, dementia problems become more prevalent, leaving many of us in the unenviable position I was in with my Mother; and I know that millions of people are currently going through the same script in their family homes. In addition, after Mother died, I cared for my dear husband with Alzheimer’s for ten years until, despite my best efforts, the body simply said, ‘no more,’ and I had to place him in a care facility. He couldn’t be left alone—not even for a minute—and I couldn’t do it all anymore. My heart was broken.
My eldest sister died at the age of 90. We had a caretaker in her home for the last month or so because she had become frail with age. Until then, she had been winning at poker and had no dementia. The middle sister, now 88, has definite dementia, just like our Mother and Grandmother. We’re not sure why, and it’s not Alzheimer’s, despite the fact that many of the same symptoms occur. Three direct generations of intelligent but difficult women, if not more, are developing dementia as they age. My best guess based on the odd little events my sister has described is that she has had some unrecognized mini-strokes over the years. Fortunately, she gave up driving on her own because she had too many fender-benders. Her son is arranging for someone to stay with her; she is resisting; she does not want to give up her independence, and no one blames her; but she is deteriorating.
If you find yourself in a family situation like mine and feel compelled to leave a loved one alone, pay attention to that feeling. But how do you know? What are the telltale signs?
To begin with, it is very easy to believe that your loved one is putting you on. Looking back, my sisters and I often thought my Mother’s behavior was more of a cry for attention than she was actually having problems with certain things. She had always been difficult and clingy, so it was natural that we would feel the same way. Perhaps it was for attention, but it was almost certainly dementia setting in, and we didn’t notice or understand it. So you should try to solve the problem. Your loved one is most likely not lying. ‘Yeah, but you don’t know MY loved one!’ you may say. ‘Think about it,’ I’m just saying.
Those suffering from dementia may appear perfectly normal, but their condition conceals many disabilities that can put them in dangerous situations at home alone. If you recognize any of the following symptoms, you may be dealing with a home alone problem.
You’ve got that uneasy feeling in your stomach!
You will notice fear in the eyes of a loved one.
When you’ve been gone for even a short time, people wonder where you’ve been.
Paranoia, hiding things.
Accusations of adultery
Tools are being used in an unsafe manner.
Goes out looking for you, especially in bad weather or while driving.
Everyone is calling to find you.
When you’re not around, he takes his medication.
Does not consume the food you have left.
Water, gas, and heat were left on, and doors were left open and unlocked.
Things have been moved around for no apparent reason.
Loses track of time, is unsure what to expect next, and panics.
Unable to sequence to plan an activity, becomes scared and frustrated.
Cannot follow simple instructions.
Making a sandwich or a cup of coffee has become difficult.
Places things in strange places.
Unable to locate items in the house, such as the bathroom.
Unable to perform daily tasks that were previously performed.
When unable to read and comprehend written signs and lists, they are too difficult.
No understanding of personal disabilities, refuses in-home assistance, and will send help elsewhere.
Loss of perception of danger and risk.
Having difficulty with the checkbook and making change.
Cannot properly respond in an emergency.
Wandering aimlessly outside, possibly looking for someone or somewhere.
When he is already at home, he keeps asking to go home.
Whatever else makes you nervous!
People become ill; family members care for them as best they can. It’s just not always feasible. Some caregivers must work; there may be more than one person in the family who requires constant care; small children in the house require attention; caregivers frequently have medical problems of their own; and aging takes its toll. Approximately 15% of Alzheimer’s caregivers die before their contemporaries, and far too frequently before their loved one.
Go to your phone book or computer to contact Adult Protective Services; and the Alzheimer’s Association, which often has information about other dementias as well, but it may differ from office to office. Contact entities such as geriatric care managers, senior centers, senior nutrition, health services, aging department or aging administration, mental health, care and aid for the aging, council on aging, elder abuse—whatever appears to be a source of possible assistance in the County where your loved one lives. It will take time and false leads, but keep asking everywhere and everyone—with persistence and luck, you will find assistance.
Dementia and Living Alone at Home
We were still doing well five years after my husband’s diagnosis, or so I thought. His accusations about my divorcing him and having other men continued, his hostile aggression toward me increased, he was having difficulty doing things he’d always done before, and he’d begun to talk about dying—said he had nothing left to live for. He was concerned about how I’d manage financially without him, so he clung to me like my shadow.
I’d had shingles, been hospitalized with a skull fracture from a bad fall (I’d always been sure-footed up until then), and had emergency surgery for a ruptured appendix. Things were not going well for me as a healthy and strong person, but after recovering each time, I always felt fine and in control. While I was concerned that if something serious happened to me, I’d have to plan for his care, we were still pretty much just plugging along, doing what we always did but in an increasingly limited way. What on earth was I thinking?
I’d slipped so gently into the Alzheimer’s caregiving trap that I hadn’t realized how drastically things had changed—which brings me to the last time I left my husband alone. I’d gone out to run some errands, and when I got home, my husband was terrified. He’d taken out my personal phone book and papers on which he’d scribbled confusing notes, and he’d been calling everyone he could think of. “I saw you at the border, I thought you were leaving,” he panicked. (We live only a few hours from Mexico.) He was saying things that made no sense, and I realized I could never leave him at home alone again; it would be too heartless, his fear of being alone and abandoned completely overpowering him.
However, caregivers must complete tasks and cannot always accompany a loved one. So I hired a senior center man to be my husband’s companion on occasion. He resisted at first, but eventually came to enjoy the visits. They visited a park, a museum, ate lunch, walked, and had man talks. If not the senior center, caregivers may be able to find someone from church, a neighbor, or a trustworthy college student to assist—as well as adult day care.
Those who live alone face a unique set of challenges. They frequently say that their neighbors look out for them, and while neighbors may ‘look in,’ they rarely have the time, experience, patience, and understanding required on an ongoing basis. It’s difficult to move someone who lives alone to a safer environment, especially if they live a long distance away. Those who have lived in isolation may refuse or be unable to move closer to help. Lack of resources and fragility may exist, but pride, stubbornness, fear, anger, independence, embarrassment, and other factors prevent some people from seeking help. Look for a geriatric care manager in the phone book or on the internet for possible assistance.
You might want to move your loved one into a nearby apartment, but if they can’t cope alone in their familiar home, they won’t be able to do so in a strange place. If you bring them into your home, it could work out well, or it could be a nightmare. Do you work and have stairwells? Who is more important—your spouse, your parents, your children, or you? Can you stay up all night if they wander around the house? Errands, doctor appointments, phone calls, and clean-ups abound. How long can you do all of that? Will your marriage fail; will you miss your children’s school events, or will you have a social life?
Families frequently refuse care facilities, fearing that placement will hasten the disease’s progression. Although there may be a setback adjustment to a new place, there is concern that care will be insufficient. Finding a good facility (they do exist), preparing for a smooth transition, being involved with staff, and keeping a close eye on your loved one may not be the worst option for someone with dementia who is at home alone. Learn about some common dementias and why it’s not good to be left home alone.