Things To Consider Before Becoming a Family Caregiver - Should You Be Your Parent's Primary Caregiver?

According to statistics in the year 2000 there were an estimated 10 million Americans in need of long-term care. Of those 10 million, about sixty-three percent of them were age 65 or older.

If your parent is a member of the Baby Boomer Generation, or older, then its a possibility that you are right now, or that you will at sometime in the future be faced as I was, with making a decision about the long-term medical care of one or both of your parents.

Not Everyone Should Become Their Parent or Loved One's Primary Caregiver

You love your parents, there is no doubt about that. Most people do. So, what would you do if suddenly faced with an immediate health crisis that requires you to make decisions for a parent or even a grandparent about their long term health care? Should they go to extended care? Should you bring them to live with you? Should you go to live with them? These are really tough decisions, which have potential long-term effects, not just for your parent and yourself, but for your own family as well.

Many adult children feel that they should take care of their parents because they are after all their parents, the people who loved and took care of them when they were young. Others feel that they should become their parents primary caregiver because it is their duty as children, or because it is expected of them. Whatever the reasoning, the startling truth is that not everyone should become their parent's primary caregiver, and that this is okay.

What You Should Consider As You Make This Choice;

Depending upon your loved one's level of dependence, the severity of their illness, and their long-term prognosis, caring for an aging parent can run from the fairly simple supervision of medication, making sure that they eat, and taking them to the doctor once a month, to the more complex needs of someone who requires continual supervision, has continence issues, and cannot feed, dress, or bathe themselves.

An elderly parent, who is suffering from dementia, Alzheimer's disease, or any number of neurological disorders, not only has physical issues to be dealt with, but often suffers total changes in personality. A man who had been an engineer, and was known for logical thinking and being soft-spoken and patient, may now be prone to fits of frustration, anger, bouts of deep and paralyzing depression, and obsessive thought patterns.

• The hours are not just long, but just as in raising children, you are on call twenty-four hours a day, seven days a week.
• As the disease progresses, Alzheimer's and dementia patients have a tendency to not sleep during the night, and their fears and anxieties often worsen in the late evening and early morning hours. (During the last year of his life, my father tended to go to bed at 9:00 PM, and awaken sometime between midnight and 2:00AM, if when he woke up he was disoriented, his anxiety level would rise, even with his anti-anxiety medications. To keep him calm, I would have to sit with him until he went back to sleep, which was usually just before dawn. )
• It is extremely difficult to watch as everyday your once vital and lively parent deteriorates before your eyes. It is emotionally draining.
• Caring for an elderly parent can be a very physically demanding endeavor. My father was not a small man. and he was a fall risk, who despite my best efforts, did sometimes fall and when he did, he had to be pulled back up off of the floor. Because of some physical ailments that had nothing to do with his Alzheimer's, he needed assistance to both sit down and stand up. When he was in the end stages and spent most of his day in bed, he still had to be maneuvered daily for sheet changes and bathing.
• Even if they are well known for being a kind, considerate, and loving person, an Alzheimer's or dementia patient may suddenly become mean and bitter, they may say the most hurtful and insulting things. They may say inappropriately sexual things to you. They may act in inappropriate ways. They also sometimes become violent.
• Because they are easily confused and their short term memory is eroding, Alzheimer and dementia patients will often require that simple things such as; instructions, schedules, the name of the television program that they are currently watching, be repeated to them numerous times. They also may become childishly demanding and uncooperative. They may develop obsessive behaviors and feel the need to repeat their words or their actions over and over again.

The Correlation Between Elder Abuse and Family Caregivers

According to the National Center on Elder Abuse, "between 1-2 million Americans age 65 or older have been injured, exploited, or otherwise mistreated by someone that they depended on for care and protection" _{-Elder Mistreatment: Abuse, Neglect and Exploitation in an Aging America. 2003. Washington DC National Research Council Panel to Review Risk and Prevalence of Elder Abuse and Neglect}

Of all of the substantiated case studies, the majority of those where an elderly person was the victim of physical, emotional, or financial abuse took place within a domestic setting, where the victim was being cared for by a spouse, adult child, or other family member.

Caring for an aging parent who is facing major health issues, and is no longer capable of living on their own can be a stressful and overwhelming job. The National Family Caregiver Alliance, and AARP have both cited these stresses, and the frustration experienced by the inexperienced caregiver who doesn't have the necessary tools, skills, and support system, as possible triggers for some incidences of physical, verbal or emotional abuse.

Becoming your parent's parent is by no means an easy task. To be a full-time primary caregiver to your aging parent requires a certain temperament, a lot of patience, physical strength and endurance, self-control, and skin thick enough to allow things to roll off of your back. Some people are suited for caring for others, and some are not.

A good example of this can be found in my own experience as my father's primary caregiver during his battle with Alzheimer's Disease. I have a sister, who loved our father just as much as I did, but whose temperament is the polar opposite of my own. She was not suited for taking care of my dad on a full-time basis, it just isn't her nature, and we both knew it. When my dad became unable to continue living on his own, I moved home to care for him, and she visited and sometimes offered respite care.

Another factor in deciding if you should become your parent's primary caregiver, may lie in the structure of your family dynamic in the past. Because dementia patients are often times confused about their own personal timeline, it is important to know that they may at times think that they are in a certain era of their life, when they are actually in another. This has the potential ripple effect of dredging up old angers, disappointments, or hurt feelings over things that might have occurred years or even decades ago.

During his final years my father would sometimes wake up in the morning and think that it was the early 1980's, a time during which I was going through a teenage stage of rebellion, and my father and I were not getting along very well. Remembering how bitterly I was disappointing him at the time, he would become sullen and angry retreating from me in a show of disapproval for my actions, only occasionally breaking his silence to tell me, in terms much harsher than the ones used in my actual adolescence, what a disappointment I had been to him, and how angry that he was with me. These attacks not only made him angry and difficult to be around, but also brought back my own feeling of shame and sadness for having disappointed him.

If the dynamic between the parent and child is a complex one filled a history of disagreements, disappointments, and arguments, for the sake of the adult child and the parent themselves, this might not be the most effective arrangement.

For an aging or elderly person who is in need of long-term care and who cannot decide for themselves what direction that care will take, it is imperative to their health and their over-all well being that the right choice be made for them. One way to do this is for the person to have long before having reached the crisis point to have made their wishes clear by creating an Advanced Medical Directive, in which they have legally stated what course of action should be taken should they become incapacitated and not able to speak for themselves. If this is not the case, then the family of the patient must determine to the best of their ability what is best for the patient.

Who Decides?

In cases where there is a living spouse who is of sound mind, it is the spouse who will have the official vote; but that spouse may very well welcome the thoughts and input of their adult children, medical professionals, clergy, or other family members.

In cases where there are one or more adult children, and no one person has been appointed by Advanced Medical Directive, or trust, as the person to speak on their parent's behalf, the decision will be made by either one or more of the children.

The Options

• Long-term or extended care in an extended care facility.
• Long-term care in their home by a hired professional.
• Long-term care in their home with a family member as primary caregiver
• Long-term care in their home with a combination of a professional and a family caregiver.
• Long-term care by a professional caregiver in the caregivers home.
• Hospice care in a hospice facility - (This is usually for terminal patients in the end stages of their illness)
• Hospice care at home - (Once considered only in terminal patients who were in the end stages of their illness, recently accepted by Medicare as protocol for advanced stage Alzhiemer's patients who need help with most or all of their ADL's and IDAL's)

In the six years that I was my father's primary caregiver we used a combination of long-term care options. I was his primary caregiver at home, and in the beginning, that was all that he required. In the last two years of his life, he had two extended care facility stays while recovering from unrelated illnesses. For the last month of his life, I was his primary caregiver at home, and I was assisted by hospice care.

Whatever decision is made, for the well-being of both the adult child and the parent, and for the sake of family harmony and unity, it is best if each child takes on only what they are capable of, with each sibling is accepting of the others limitations.

^{-Kristen Burns-Darling © January 2012 (all rights reserved)}