As we age, many of our conversations turn to reports of our physical well-being as our ailments or disabilities can seriously disrupt our ability to function on our own. The inability to take care of ourselves impacts those around us, which is particularly challenging in the event of a dementia diagnosis.

When a loved one presents with dementia, you both need to prepare yourselves for the journey forward as best as you can. You will be faced with challenges you may not have imagined, and many decisions will be yours alone.

As every situation is unique, there is no one answer or set of solutions that will work for everyone. Hopefully, these thoughts can at least begin the discussion.

Prepare yourself

If you haven’t done so already, a first step in the process of identifying your options is a frank discussion with a trusted family physician. If he/she confirms the diagnosis of Alzheimer’s, Parkinson’s or dementia, you will need to:

• Understand the basis of the diagnosis,
• Know the stage of dementia you are dealing with,
• Have an idea how rapidly the disease is progressing,
• Have a complete grasp of what medications are being given, and
• Know what you can expect in the short and long term.

A medical diagnosis of dementia is valuable when speaking to support agencies.

You also need to be honest with yourself and other family members, especially if you are committed to being an at-home caregiver. Currently, there is no cure for dementia.

Questions to ask a provider

Many family members choose to take on caregiver responsibilities, particularly in the early stages of the development of symptoms.

As the disease progresses, however, continue to ask yourself these questions:

• Do you have the skills and tools to take care of someone in this stage of dementia?
• What, if any, changes do you need to make your home safe and comfortable (such as space for a hospital bed or grab bars in the bathroom/shower)?
• As the disease progresses, can you keep up with the demands of care—physically, emotionally, mentally and financially? No two days will be alike. A good day today does not mean it will be a good day tomorrow.
• Do you have friends/family you can rely on to help?
• Is there someone who calls regularly to check on you?
• Are you prepared to make different decisions if in-home care becomes more difficult to deliver?

Keep your knowledge of resources current. It is o.k. to change your mind as you gain new information and updated experiences. Keep a good record (with dates) of developments to enable you to look back and see a realistic picture of how things are progressing. Keep yourself healthy. (I am reminded of the pilot’s directive to place their oxygen mask on first and then help those nearby.)

Local resources that can help

Some have asked for a list of services that can guide a dementia caregiver. I agreed to put one together and summarized what I have found available in Carteret and Craven counties.

You may not be surprised to know that these types of resources, especially in Carteret County, are limited. Many did not survive the widespread shut down of person-to-person services during COVID and are just now trying to restart/restaff.

Even though I contacted many of these agencies before listing them to confirm the phone number and that the receptionist could answer some basic questions, I strongly suggest that you do the same. You know your situation in far greater detail, and you are in the best position to determine what will work best for you.

List of resources

The list of resources appears on our website at pkscouncilonsuccessfulaging.com/. Please note that the Council on Successful Aging does not endorse any of the providers listed.

The information included is thought to be reliable, but is not guaranteed to be accurate. It is compiled from provider descriptions of their own services as well as other public data sources and is subject to change without notice. It is organized by type of service; many services are not mutually exclusive.

I strongly encourage you to explore these services, talk to participants and evaluate the benefit to you and those for whom you are caring.

The list covers these content areas:

• Caregiver discussion groups (in person as well as virtual)
• Patient support groups, including Memory Cafes
• In-home nonmedical patient care
• In-home medical patient care
• Local physician specialists
• A review of tech tools that can help to preserve a quality of life

The initial list of resources covers nine pages, and the landscape of services for those with dementia and their caregivers is not easy to navigate. If you do need assistance, consider engaging a patient advocate to help you sort through the options, especially as the disease progresses.

The most recent forum offered by the Council on Successful Aging showcased the work of the patient advocate. See “Who Will Care for You?” by Ann Bures on our website or in the April 2024 issue of The Shoreline.

Author’s notes

This list of resources was compiled to guide you in your search for information and is not intended to be exhaustive. No church groups were included in these selections, though it may be worthwhile to ask if your church offers these types of resources.

Further, there are no Veterans Administration-specific services listed here. Home Helpers in Morehead City (listed under In Home Nonmedical Patient Care) has a current, strong relationship with the VA and can help you explore these benefits. Call 252-622-4690 for details.

Be aware that there are numerous online articles on a wide variety of topics related to caregiving and understanding the progression of dementia. One place to start is with carterethealth.org. Just search for the condition you want to learn about.

Alternatively, an internet search for a specific organization (Dementia Alliance of NC, Alzheimer’s Association, etc.) or for a specific topic (dementia caregiver support in NC, etc.) will yield information that may be useful.