Worldwide, nearly 44 million people have Alzheimer’s or a related dementia, and only 1-in-4 people with Alzheimer’s disease have even been diagnosed. (“Alzheimer’s statistics”) This disease Alzheimer causes people, usually elders, to gradually forget valuable information like where they live, who their loved ones are, and even how to communicate.
Alzheimer’s has stages, and they’re commonly separated into four. The first stage is mild cognitive impairment, this is the initial stage and most mild one, the symptoms are forgetting things that an average person would recall with ease. This means forgetting doctor or dentist appointments, misplacing things, and even conversations they’ve had with others. They may also lose the ability to organize and plan things, judging and learning could also be affected. The second stage is known as mild Alzheimer’s; the person may start to forget some words, sometimes their medication, and forgetting names. Third stage is called moderate Alzheimer’s, in this stage the person may start to forget familiar faces, get lost in areas they know really well, like their own neighborhood, and sometimes they’ll show difficulty with physical activities. The last stage is severe Alzheimer’s, these people are required to be supervised twenty-four hours a day and be assisted with uncomplicated things like brushing their teeth, getting dressed, and getting fed. Most of the time when it’s to the point where it is severe, it’s hard for them to communicate at all with anyone, their moods are fairly unpredictable but usually angry, and it’s not rare for them to even experience hallucinations. At this last stage, a person is completely dependent of their caretaker.
Would they be better off at a hospice or at home with their families? In 2016, 15.9 million family caregivers provided an estimated 18.2 billion hours and $230 billion to people with dementia. The families of these elders spend the majority of their time making sure they have everything they need and the attention needed for them to feel safe and to maintain their wellbeing, while also having their own things to do, not to mention the costs of everything.
Taking care of a loved one requires a lot of hard work and commitment, some benefits are, Bursack says, that it may be simpler for them to stay in a familiar environment, so it is less disorienting. Since they are very dependent during this time it may be hard for them to be transferred to a completely new place to call home. She says if the family does know what they’re doing, and generally know about Alzheimer’s or dementia care, then it may just be better for them to stay home. The family knows more about their loved one than a caretaker at a hospice, so they could help keep a routine going. For example, if a person has read the newspaper for years at around noon, their family is probably aware of this, and can help remind them to read the newspaper every day at noon, to keep the routine going, because if a person with Alzheimer’s has a schedule to follow, it can actually reduce their feelings of confusion and anxiety.
The caretakers of the person with Alzheimer’s suddenly become undifferentiated their parent. An example of this is shown in(“A Place Beyond Words” by Stefan Merrill Block, “One day, that February, when my mother went to run an errand, she worked herself into a panic. “Where did she go?” Nana asked, with all the terror of a child separated from her mother at the zoo.” As Alzheimer’s progresses, their age seems to regress, it’s almost like they’re children again. This however, doesn’t mean they are actually becoming children. Rachel Wonderlin explains that this is because they are losing experiences they’ve had when they were older, not because they are actually “reverting” back to being children. With home care, there’s certain things to do to make it a little easier on yourself, but even with all the help, most Alzheimer’s professionals advise that it’s best to bring these patients to a hospice at a certain point, when it gets too advanced.
The major disadvantage of a loved one staying at home instead of going to a hospice, is all the stress it imposes on the family. Whether it’s the costs or all the energy a person has to input to care for a person, instead of maybe their kids, it’s just a lot of pressure. Focusing solely on the money aspect of this, taking care of loved ones with Alzheimer’s would be hard because it is America’s most expensive disease, it costs even more than Heart disease and Cancer, and the costs are only estimated to rise in the next couple of years. The next disadvantage would be how their families put most of their times into taking care of them, and to make matters worse, the caretaker is likely to put their loved ones needs before their own and fall into depression, or become extremely stressed.
One could say the caretaker also becomes quite sick as well, because they invest their lives to take care of them. These caregivers can start to experience “symptoms” from taking care of a person with Alzheimer’s or dementia. These symptoms could range from denial, to health problems. Denial can easily happen when all of a sudden someone tells someone news they never expected, and Alzheimer’s is a big thing to take in. Denial to the fact that someone has Alzheimer’s would be like someone telling themselves that it has to be a mistake. This person could stop being social all of a sudden because they know that there is someone at home that needs them, and they could feel guilty for being out with friends for example, while they have a responsibility at home. The caregiver could have sleepless nights, just making sure they don’t hurt themselves, or wander out of the house while they’re asleep. They could grow irritable, anxious, and have a lack of concentration. Lastly, their health could go downhill, being completely in charge of someone’s life can really cause a negative effect on somebody’s life, both mentally and physically.
This might not only cause all this stress to the caregiver, but to the whole family. They could start to feel neglected, because of the amount of time that it is necessary to give to the elder at home. This could end up in the family not spending as much time as they’d like to spend with each other, and maybe even diminish communication between them. This can over time cause strain on a family. They could also become stressed, not only the caregiver. A person with Alzheimer’s is completely unpredictable, and sometimes it may just be hard to see what makes a person a person, their brain, slowly fade away, and for them to say or do things that are generally uncharacteristic of them. People with Alzheimer’s are prone to say things that shocks their families, generally their outbursts are angry and rude, it can even go as far as to them saying racial slurs, and swear words, and sometimes this side of them just isn’t the side of them their families would like to remember them bye.
Another option is putting loved ones in a hospice. This could be a good idea, because the family doesn’t have to slowly see someone special to them deteriorate and change the views they once had on them. People don’t usually consider at home care as a long-term solution, because at a certain point the Alzheimer’s will become too advanced for the family to know what to do, this is where trained professionals come in. Families shouldn’t feel bad about leaving their family member at a hospice because nowadays they’re so advanced, and feelings of guilt are very common as well, it’s better to think that hospices do know what is best when it comes to the care of an Alzheimer’s patient.
A positive thing to think about is the fact that there’s going to meet so many other people going through the same thing and probably all ready to support each other, these are the people that can really understand what they’re going through and will be there all the way to the end. An important thing to think about is the patient’s feelings, when they talk to people they could feel like they pity them because they don’t understand what they’re going through, the other patients would. The patient could even feel like a burden to their family if they ended up staying at home, even if they’re really not. All of the previous reasons have been positives for the patient, but what about the family? They get the peace of mind of knowing that someone that knows what they’re doing is taking care of their loved one, like they’re supposed to be cared for.
There are tell-tale signs for people to start noticing when it may be time for them to go to a hospice, because their Alzheimer’s is getting too advanced. When they start needing assistance with most of their mobile activities like walking and sitting, this requires lots of patience and it’s easy to accidentally let frustrations out on them. When they can no longer form intelligent sentences or communicate, it can just be too upsetting for the family to see and sometimes their brain starts playing games with them, telling them they could be lying, and they can actually still talk perfectly fine, this could overwhelm the person with Alzheimer’s.
Moments of lucidity could be either a positive or a negative thing for the patient and the family. Lucidity is characterized as moments of absolute clarity that can last anywhere from a couple of minutes to an entire day. One could say these could be precious moments that should be cherished with family, but it could hurt even more to see an automatic transition of the person somebody used to know, to basically a stranger. Marley shows an example of lucidity in a blog post, her husband has Alzheimer’s and her mother died she was devastated, even more so because she knew her husband wouldn’t be able to console her, she mentioned it several times yet he remained confused. One month she chose to wear all black to honor the death of her mother, when she went to visit her husband he said, “You look so beautiful in that black shirt even though I know you’re wearing it for death.”
Negatives of the nursing homes, if the person with Alzheimer’s does have their moment of lucidity and realizes they aren’t surrounded by their loved ones maybe they would feel abandoned, or unloved. During the time they are lucid they could feel just fine, and they could get scared and think they’ve been incorrectly placed there. It can be overwhelming for them to experience these feelings and thoughts all at once, whether it is just for a couple of minutes or most of the day.
Overall this disease is overwhelming to the family and the patient and it stays that way no matter what a person chooses, because they each have their own pros and cons. In an idealistic world, a person would never be lost, or more specifically, their minds. In reality, “between 2017 and 2025 every state is expected to see at least a 14% rise in the prevalence of Alzheimer’s”. This disease will unfortunately continue to grow and it’s extremely important to plan ahead since one in 10 Americans over the age of 65 have Alzheimer’s.
The patient’s wishes are very important in this issue, since they are who are going through this, what would they choose and could their current state of mind be changing the way they view the situation? The family may just keep their loved one due to the fact they might feel guilty otherwise, like handing their baggage to someone else, but if their loved one knew they were doing it out of guilt they would probably feel uncomfortable with homecare anyway. If a favor is done without genuinely wanting to do it, or having the intentions to really help, it’s best not to. If deeply thought about, the home care vs hospice question could be like choosing what the family would be most comfortable with versus what the patient really needs and it’s about choosing whose comfort is more important.
It’s important to remember people with Alzheimer’s are still people, they need love, care, and patience, and if a caregiver at home can’t provide that or treat them like a human being, it’s best to let them go, because if a person is taking on the role of being the caregiver of a person for a reason other than just wanting to make sure they are safe and happy, like to make themselves feel good for doing a “good deed” it is just selfish.
Alzheimer’s is such a common disease in the United States and it is very rarely talked about or even represented in the media other than in a big hit made in 2014, a movie named, Still Alice. This was a moving story showing the stages of Alzheimer’s, Alice goes from forgetting a couple of words of her speech in the beginning of the movie, to being unable to form sentences by the end, and simply responding, “love,” after her daughter asks her what she thinks a story she read to her is about.
A frequently asked question about Alzheimer’s is, is the person still the same person they were before they got the disease on the inside. Block explained the circumstances perfectly, “his real self wasn’t hiding in there waiting to be sprung. This was his real self now.” There is no old person, future person, all we have is the person that is there now.
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