The Tribune

EARLIER this week, a video of an elderly woman being abused by a supposed caregiver made the rounds and drew commentary from shocked and disgusted members of the public. Many people, if they had not seen the video, would not believe people could be so cruel to elderly people. It is not often we consider this group of people or its vulnerability beyond the pittance we know as “old age pension”. They are, far more often than we acknowledge, at the mercy of their children and grandchildren. In many cases, people do not want to be bothered with the care of their parents or grandparents. They simply do not see it as their responsibility or do not see how they could find the time and other necessary resources to do it. This could play a role in the violence against elderly people we see and the acts we will never see.

Preparing to care

As I get older, I recognise other family members are aging too. I wonder what their lives will look like in the next decade or two, and what that means for my own life. Their health and wellbeing are factors that help determine where I will be and how I will live in the years to come because I have no intention of abandoning them. As a feminist woman, I also consider and respond viscerally to the expectation that people have of women to do care work. I go back and forth on concepts like “obligation” and “responsibility” because I both reject the assertion that it is my job - by virtue of being born and assigned female at birth - to take care of my aging family members whenever the time comes, and I am unwilling to leave the care of those people to chance or in the hands of unscrupulous or ill-equipped people. In a society that is uncomfortable discussing aging, progressive illness and death, most of us are playing guessing games. We have no idea who is prepared to step up, or in which ways they will avail themselves. Not knowing how to approach the conversation or being unaware how quickly conditions change, most people seem to ignore the fact that is aging, whether their own or their parents’ and guardians’.

Have you ever asked your parents what they want to happen if they become incapable of making decisions for themselves? Do you know if they would prefer a loved one or a stranger to care for them? Are you aware of your parents’ and grandparents’ financial situations? Do you attend medical appointments? Do you know the condition of their health, both physical and mental? Can you name the medications they are on? Are they adamant staying in their own homes or are they open to moving in with you? How often do they speak with your siblings and their siblings? How are your siblings, aunts, uncles, and cousins willing and able to show up for them?

Getting the answer to these questions is not fun. There is often resistance when the topic of old age, possible illness and palliative care are raised. No one really wants to think about becoming dependent on their children or grandchildren for their most basic needs. No one wants to think they may, some day, not be able to make decisions for themselves. Still, these things happen and it is much better to be prepared. Open, honest conversations are critical to our survival and comfort. When we pretend as though these things cannot happen to us, we can easily end up in bad situations such as being stuck in the care of the worst possible family member or suddenly providing care without knowing what to do or how to do it.

Caring for loved ones with Alzheimer’s

It is challenging to care for a person with Alzheimer’s, regardless of the stage they are in. The early stage can trick us into thinking the person is simply forgetting things in a way that is “normal” as they get older. Because of that assumption, other symptoms are often missed or misinterpreted. It is important to remember that no one wants to experience the lack of control that comes from a failing memory. It can be embarrassing and frustrating for them, and the expressed annoyance of loved ones and caregivers does not help. They have feelings, and they deserve to be treated with respect and kindness and to retain their dignity.

At times, people with Alzheimer’s may insist that what they are saying is true. It is not that they are lying, but that they do not remember. It is not helpful to accuse them of lying. It is not helpful to tell them they are wrong. As tempting as it may be, it is useless, and can actually be harmful, to correct them. In their minds, certain people are still alive, some of the people dearest to them may now be dreadful, and events in their histories are happening in the present. They are not faking it, nor are they trying to confuse or upset you. Recognize that something is happening in their brains, whether or not you understand it, and try to minimise their frustration by acknowledging their realities.

It is difficult for people who are accustomed to independence to receive care and adjust to new conditions. You may find that you need to keep doors locked, hide keys and monitor the movements of your loved one with Alzheimer’s. Understand how this can be frustrating and demoralizing. Find ways to give them independence and treat them like adults. You may not be on top of everything at all times, so mistakes will happen and they may give you some extra work. We have all seen bulletins about missing elderly people who likely escaped their homes and caregivers. It happens. They should not be punished for getting out. Again, they are experiencing life differently and their brains are not cooperating with what you know to be true. Rather than punishment, they need extra love and care.

Who can provide care?

Some people believe children and grandchildren should be endlessly available for caregiving. This makes sense when we take into consideration many people regard procreation as an insurance policy. Unfortunately for them, having children does not guarantee care and it certainly does not guarantee good care. Some children will simply opt out. Some will stick around for the optics. Some will genuinely care and do all they can to provide support. Some will be resentful, angry and terrible at caregiving. Which of these would you want to care for you?

Of course, there is more than willingness in the equation. Caregiving requires resources. Adequate housing and appropriate household fittings and mobility devices are necessary. There has to be clean water. The caregiver needs to have money to purchase enough food and/or supplements, and medication. They also need time. Caregiving is not easy work for anyone, but it is especially difficult for a person with a full-time job. In many cases, it simply cannot be done. Support workers are needed to fill in the gaps. Again, this requires money. For most families, it is also important for the support worker to, for a period, work alongside the primary caregiver or someone else in the household so they can learn the norms of the household and the best ways to engage the person.

It is not advisable to choose the person who does not have a job to provide care. Having the time is not the same as having the appropriate manner and the skills required. It is also not advisable to direct the person with the most money to simply pay someone to do it. When that person decides they have the right to make all of the decisions without consulting with anyone else, problems arise. The caregiver needs to have or be able to build rapport with the person receiving care. They need to work and communicate well with loved ones. They need to be patient and understanding, and able to deescalate situations. They also need to understand what constitutes abuse and be resolutely against all forms of abuse. Clearly, there are serious conversations that need to take place before a caregiver is chosen.

Looking at the system

People are not only getting older every day, but we are living longer lives. They are not necessarily healthier or more comfortable lives, but longer, nonetheless. This needs to be a consideration as laws, policies and programmes are developed. What will happen to elderly people who have no family to take care of them? What support do families need, regardless of their financial assets? How can we prepare people for the role of caregiving and assist people who want to plan for the later years? These may seem like individual problems now, but as more people live longer, the aging population grows, and progressive and debilitating diseases become more common, it will be unavoidable in our communities and across the country. It will impact different groups of people in different ways. People in the Family Islands will have different experiences as will migrant people. People experiencing poverty will certainly face specific barriers. While we need talk within our families and communities, we also need to demand more of the government. Caring for us, the people, is its job, even (or especially) when we reach and pass three score and ten.