health care representative
Whether your aging parent lives in a long-term care (LTC) facility or in his or her own home, if you live more than an hour away from them, you’re their long distance caregiver. What are you doing to protect them, and yourself, during this trying time?
As I mentioned in Part I of this article, published December 3, 2011, bridging the gap between you and your parent can be a difficult task. Being able to monitor your parent’s day-to-day life from a distance, especially when a parent has dementia, is a frightening task, and it’s one for which you need suitable support. What follows are suggestions gleaned from my experiences with my father.
If your parent lives in a long-term facility:
- If you haven’t done so already, meet all the department heads entrusted with your parent’s care. Do what you can to be on record as the go-to person. If you are your parent’s health care representative and/or financial representative, make sure that the facility has the appropriate legal documents in your parent’s file. Whether a crisis arises or you simply need to discuss your parent’s condition, making sure the staff know of your legal authority to discuss care will make your, and their, job a smoother one. If you don’t have those specific legal documents in place, and if your parent is still able to designate you as the approved contact regarding care, do so as soon as possible.
- When it’s time for your parent’s care conference, a time when the resident – if able – and care staff discuss the resident’s plan of care, be present by phone. This is a more common occurrence than you may think. Share your observations of your parent’s behavior, phone abilities – or lack thereof – and don’t be shy about asking detailed questions about your parent’s care, regardless of how intimate the details. As your parent’s advocate, you have the right to question the staff’s care plan – and you should.
- Meet your parent’s primary care physician. Be sure that he/she has it on record that you are your parent’s health care representative. Being able to talk to my father’s doctor to discuss all of his medical conditions, as well as all treatments, including medications, kept me in-the-know and enabled me to keep my siblings informed. My brother and sister were also a big part of my dad’s life and they were also long distance caregivers. They told me time and again how appreciative they were that I was on top of dad’s care, and that I was able to keep them informed at all times.
If your parent lives at home and is in the early stages of dementia:
- Follow point 3 above because even if both of your parents live in the home, you probably can not rely on them to be on top of their own care. The parent without dementia is the on-site caregiver, and at his or her advanced age, might not be able to adequately function on his own behalf, forget trying to do so for his spouse with dementia. If your parent is living alone without the presence of a family member, you have no choice but to nurture a relationship with his/her medical team so that you know what treatment your parent is receiving; what medications have been prescribed; and what long-range care goals should be addressed.
- Engaging the help of trusted friends, church members, and neighbors might provide some sort of care continuity as they do drop-in wellness checks of your parent. If you have people who are able to provide this type of observational visiting, I suggest you utilize web services, such as the following, that can help get you organized: Lotsa Helping Hands, which is “Free, private, web-based communities for organizing friends, family, and colleagues – your circles of community – during times of need. Easily coordinate activities and manage volunteers with our intuitive group calendar”; or Caring Bridge which is “Free, personal and private websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.” Additionally, Caring From a Distance provides resources that are available in your parent’s local area: “Whether you live across-the-world or an hour away, you and your family face special challenges. Where can you find the local resources they require? How can you, your family, and friends communicate in an emergency?”
What if the burden is too much for you to bear?
You’re in good company. If I had been familiar with the services listed above I think my caregiving journey would have been a smoother one. But believe it or not, this type of caregiving challenge is one that is relatively new in the grand scheme of things. If you’re losing ground as your parent’s long distance caregiver, it might be time to consider the services of a Geriatric Care Manager. The National Association of Professional Care Managers is a non-profit resource that can put you in touch with someone who might be able to provide the bridge you’re looking for.
Consider the cost of managing your parent’s care from a distance:
- time off from work;
- driving and flying time to your parent’s location;
- hotel accommodations, food and other travel expenses; and
- the emotional and physical toll on yourself.
Paying a Geriatric Care Manager to manage your parent’s care, whether he lives at a long-term care facility or in his own home, may greatly pay off in the long run.
Whatever you choose, and which ever direction you take, I hope you will carefully consider the best option for your particular situation. As I’ve said in past articles, only you know what is the best fit for your family. Consider all the alternatives and move forward confidently.