Many years ago, as a newly married couple serving in our first church ministry, we were part of a conversation that I have never forgotten. In the early 1990’s long term care facilities were becoming more and more available as an option for elder care. As with anything new or expanding, many had their own very adamant opinions of what was right or wrong with these facilities. Many stated that they would never have their spouse or parents go to a nursing home as they would care for them themselves. While admirable, this may not always be a wise or viable decision.
As the conversation and arguments loomed, our pastor told us of when he and his wife cared for his Dad. A man’s man by anyone’s standard, the pastor’s father became so ill and frail that he could not so much as bathe or toilet for himself thus requiring his son to aid him in those needs. Upon looking back the pastor said he wished he had noticed sooner and had asked his Dad what his desires were. You see, it was some months later when he noticed the look in his father’s eyes: the loss of dignity. The pastor realized his father would have responded better had strangers cared for him rather than his own son. He said at that moment he no longer looked down on those who chose to place their loved ones in a nursing home. By doing so they were able to allow others to meet the physical needs of their loved one while maintaining the relationship as well as protecting the dignity of their loved one.
As you prepare for the future of caring for your loved ones these are matters that must be considered. Will your loved one feel robbed of their dignity in these final years, months, or days? Discuss with your loved ones their desires. Talk to other caregivers. Research what is necessary when caring for a loved one at home. Will you be able to manage these things? Yes, we can all do things we don’t think we can. However, think about the commitment and stamina needed to do so for an adult, not just an infant or child, who may have chronic healthcare needs.
Because we live in such a transient society, many families are spread throughout the country as they follow career paths or go where the jobs are. The days of generations living in the same town are rare now. Add to that smaller sized families which reduce the number of available caregivers. Then, there are those known as the Sandwich Generation who care for both their own children and their parents or other elderly family member.
Caregivers for parents or grandparents may end up making many hard decisions. Do you move back to where your loved ones are? Do you move them to you? Do you travel back and forth several times a year, often hours away, to stay for a week or longer to ensure needs are meet? These decisions not only affect the caregiver but also their spouse, children, and employment and ministry obligations. Eventually, the decisions will also make a huge impact on the caregiver and their own family financially as well as physically, emotionally, and mentally. It is vitally important that those who do not become the primary caregiver for family members to pay attention to the caregiver. It is easy to assume that all is well with the caregiver. It usually is not. Most caregivers will not ask for help nor do they want to burden others with their own problems. Often a caregiver has already passed the stress phase and is firmly in the burnout stage before they (or anyone else) is aware of it.
These articles have a wealth of information for both the caregiver as well as the other family members.
As your family discusses the intricacies of end of life care, each one needs to be honest about what they can and cannot do. At the same time, plans need to be in place to aid the primary caregiver in taking time for themselves through weekly breaks as well as vacations. This could be arranged through adult day care, respite care, or others coming in to care for and keep your loved one company. Some family members may need to take even longer periods of time to come help care for a loved one. In order to do this they may use their sick and personal days and vacation time so that they can still receive a paycheck. Once this time is used some employers may offer the Family and Medical Leave Act (FMLA). US News and World Report has an excellent article explaining some of the stipulations and restrictions involved in this labor law. (6 Things Employees Should Know About the Family and Medical Leave Act) For more details regarding FMLA go to the Department of Labor’s pdf Fact Sheet #28.
Although we do hear some horror stories in regard to long term care facilities, there are many, many other facilities and communities that are excellent in their care of your loved ones. Do your homework. You may be able to care for your family member at home for some time. Remember, however, statistics indicate that at least 60-70% of all people over 65 today will eventually need up to 2 years of long term healthcare. (75 Must-Know Statistics About Long-Term Care: 2018 Edition) As we have stated in other areas of this series, hope for the best but plan for the worst. Whether the care comes from you at home or from professionals in a healthcare facility the point is that the comfort and care for your loved one is being met. This is the primary goal regardless of where or by who.