“Something is wrong with mom!” The realization is frightening no matter where you are, but especially when you live far away from a loved one exhibiting signs of dementia. What can you do when you live hours away and a phone conversation with your loved one turns into a confusing jumble of past conversations or paranoid rants? Lately, I’ve had several conversations with long-distance caregivers embarking on this new and scary journey.
Recently I spoke with *Cassandra, a young woman who is her elderly aunt’s only living relative. Cassandra flies across the country fairly regularly to ensure that her aunt’s bills are paid, home is maintained and her medical needs are met. On her most recent visit, Cassandra arrived to find her aunt’s air conditioner broken, the house steaming hot and her aunt looking unkempt for the first time in her life. Cassandra felt heartbroken, afraid, embarrassed and unsure of what to do next.
No two caregiving experiences are the same, but the feeling of helplessness is pretty universal when it comes to long-distance caregiving. There are some signs that long-distance caregivers can be on the lookout for when they are speaking to loved ones or during visits:
- Repetitive Conversations: Often one of the first things long-distance caregivers notice is that a loved one begins repeating stories in the course of a single conversation. Someone with worsening memory loss may also have difficulty following lengthy conversations.
- Trouble with finances: Are bills going unpaid? How often does your loved one go to the bank to withdraw money? More than they used to? Check in about finances to see if you notice any red flags in that area.
- Medication Usage: When you visit, can you tell if medications have been taken every day? If all of the bottles are still full, there may be a problem. Setting up a pill minder is a great intervention, if your loved one can remember to use it.
Like Cassandra, you may have already discovered that you are caring for someone with increasing needs. You may also be trying to coordinate with other family members, near and far, to agree upon a caregiving plan. All of these challenges can be daunting, but the Alzheimer’s Association is here to help. Part of what I do is work with families locally to help develop a plan of care – everything from legal and financial planning to making referrals for home care, adult day care, living facilities and safety services. The other part of what I do is provide education and training about the disease process – this is especially important when there are lots of caregivers involved. It is nearly impossible to get everyone to agree to a plan of care if everyone can’t agree on what the problems are to begin with! And finally, I am here to provide emotional support to you on this journey and to help you widen your network of support. Caregiving is often an isolating experience and it doesn’t have to be. There are plenty of support groups with people who have been there, or who are there, and who can help you get through this. Whether you are local or long-distance, caregiving takes a mental, emotional and often times physical toll.
Here are some quick tips to get you started in the right direction:
- Identify resources and use them.
Learn about what is available in your community by contacting your local Alzheimer’s Association at 1.800.272.3900 or using our online Community Resource Finder. You can also use Alzheimer’s Navigator, our free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.
- Reassess care needs during each visit.
Dementia is a progressive disease, and care will need to be adjusted over time. While someone in early-stage Alzheimer’s may live independently, by the middle stage, 24-hour supervision will be required. Each time you visit, assess the situation to make sure care needs are being met.
- Keep communication going.
As a long-distance caregiver, you may coordinate many moving parts. Whether it is with family, neighbors or home health aides, set aside time to regularly discuss the needs of the person with dementia. If the person with dementia lives at a residential care facility, set up a regular time with the managing nurse or physician to get updates and maintain ongoing communication with care staff and friends who visit regularly.
- Gather pertinent information and keep it handy.
Make sure you have contact information for physicians, pharmacies, care providers and neighbors, as well as important financial and legal documents easily accessible in case they are unexpectedly needed.
- Be kind to yourself.
Living out of town does not mean you aren’t involved or that you don’t care. Get support by connecting with others who are long-distance caregivers through our online community.
The Alzheimer’s Association can be your partner in care. Don’t walk this journey alone. Contact us 24/7 at 1-800-272-3900
*Some details of the families are altered to protect their privacy.