Many years ago I decided to take an elective graduate school course on the treatment of people with Chemical Dependency. Not only did we learn about the various therapeutic models available at that time to treat addictions, but the professor was very passionate about his belief that Alcoholics Anonymous, while helpful to a subsection of the population struggling with these issues, was being touted by the government as the end-all solution because it was free and therefore, no tax dollars had to be spent on rehabilitation. I was disturbed by the thought that perhaps folks with no money are given only one option which may or may not be an appropriate match for their needs because no financially plausible options exist.
Recently I had a similar experience, this time when discussing with others interested in issues related to aging, the factors that drive people to hold on to caring for their parents or spouses at home even when they struggle with the diagnosis and severe symptoms of Alzheimer’s and even when money is not a barrier to obtaining high quality professional assistance. It was mentioned that insurances have been pushing care of patients with acute problems out of the hospital as soon as they are stabilized for financial reasons and that this push has had a cultural effect of cementing the social perception that caring for all ill loved ones at home, regardless of the chronicity of disorders, is the only appropriate choice. This may be fine for acute care which has a definite timeline for resolution of the issue, but is likely not fine for cases which are chronic, particularly those with Dementia. This got me thinking that people facing the decision about the best form of care for loved ones with Alzheimer’s should be informed about all of their options and the larger cultural and financial factors which might be affecting their ultimate decision.
While a cookie cutter solution is not available nor appropriate for every person with a relative with Alzheimer’s, consider that the social perspective and current paradigm of care seems to only allow for the idea that staying at home is the best option always. Consider that perhaps, paying professionals to care for your loved one at home may be not only financially unfeasible but may also result in social isolation for both parties. While the arrangement may work well for some folks, the paradigm does not allow for any reflection of real issues that may surface such as a proper understanding of the overwhelming physical exhaustion that might make the role of caretaker transform from one of superhero to one of martyr.
While you may be able to meet your loved one’s needs at first, three factors may combine to create a perfect storm. First, your relative’s health will deteriorate over time, making their care inevitably more difficult. Second, you will get older as you care for them and may find yourself with a lessened stamina due to age-related matters. Finally, you may find yourself with depleted energy over time due to your caregiving efforts and resulting stress. It’s sad and ironic that when your loved one requires the highest level of care, you may be more exhausted than ever.
While there are fortunate folks who have accommodating family, friends and neighbors who will help out when someone gets sick it’s important to realize that oftentimes, people will help out as long as a disease is perceived as acute. They may step in to help with transportation to appointments, preparation of food, or cleaning the laundry, but the likelihood is that they will not continue to help out in the long-term. If you are lucky, you might find that neighbors or friends will provide assistance for about six months. Once the disease is perceived to be a chronic disorder, many previously helpful people may begin to feel obligated to help, which may lead to resentment and guilt and a slow phasing out of that person from your lives. When receiving voluntary assistance from others’ it doesn’t hurt to have a plan B should people disappear.
What about paying for services? Perhaps you can afford to pay thousands of dollars a year for nursing, companion, cleaning or homemaker services or skilled care. Possibly, and hopefully, this will permit you to continue to enjoy your life. However, if you find that your quality of life is pitiful and that your primary social interactions and relationships are with people to whom you pay for their help, it may be time to change your paradigm and to ask yourself what good it is to stay at home, if your life patterns, relationships and needs are not being preserved?
If you and your loved one find yourselves facing a chronic disease such as Alzheimer’s which over time can erode both of your health statuses and could stress out your relationship, it may be time to consider a long-term care facility. While staying at home might be, at first, familiar, more comfortable, less conducive to tough conversations and thus easier overall for the family, you may find that it may be, counterintuitively and in the long run, a cage of your own making. Contrary to expectations, you may find yourself immersed in a situation of increasing isolation, with a decreased quality of life and in the unpleasant situation where your best relationships are with people that you have to coordinate and pay to come to your home to provide services. Often, relatives do not consider long-term care until their loved one wanders from the house or falls, at which point safety becomes paramount and they are at their wit’s end. Perhaps it’s time to present a new social model that allows both the people affected with Alzheimer’s and their caregivers to live a high quality of life in relationship to others. While Alzheimer’s is not fixable, perhaps your loved one can preserve their life patterns in a completely different environment, but still close to home. Hopefully, in this supportive, retirement community environment which recognizes that the capacity for normality is redefined every week or even every day because of the disease, your loved one can, through the safety net of consistency, interactions with other residents facing similar issues and skilled nursing care, still have a great day. Furthermore, the caregiver too can enjoy time with their friends and loved ones without the added stress of coordinating multiple service providers and doing work that requires a special skill set.
In regards to Alzheimer’s, we don’t spend enough time talking about what people are going through - the good, the bad and ugly. Making decisions for loved ones can be an arduous process involving massive fear of not making the right decision which can lead to emotional paralysis. It’s time for the people most affected by these issues to be given all of the options available to them during the toughest time of their lives.