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Helpful tips for family caregivers

Dementia and long-distance caregiving: Building a team

 

Learning that a loved one has received a dementia diagnosis is hard. Perhaps even more so if you live far away but are responsible for their care. In this situation, you’ll need an on-the-ground team of people who live near your relative to support them and you.

In the early stages of dementia, it’s important to respect your loved one’s ability to handle what life activities they can. Taking over too much too soon can backfire and precipitate resistance. It’s a time for bonding with them about the diagnosis and getting set up to monitor their safety and well-being. Brainstorm with them about family/friends who are nearby and might pitch in. Realistically, you may need to hire some professional help. Consider who can assist in these areas:

• Home and safety. Someone to watch for scorched pans, burned-out lightbulbs, increasing clutter, and other signs of decline. A paid housecleaner. An occupational therapist or aging-in-place specialist to assess for hazards and recommend adjustments.
• Meals. Do they need help with grocery shopping? Are they eating three daily meals? Will local family/friends include them in meal gatherings? Also check out meal delivery services and related community resources.
• Health and medications. Ensure you know their doctors, pharmacists, and other healthcare providers. Get authorized for direct contact. Prepare someone to monitor medications and take them to appointments. Have your relative update their healthcare power of attorney: What are their wishes now? Who is available for emergencies?
• Bills and finances. Make sure they have named someone as durable power of attorney to take over when they no longer have capacity. On an immediate basis, someone needs to monitor that bills are paid and scams avoided. Some tasks can be done from afar by you. Daily money managers and financial advisors can also play a role here.

To find and vet helpful resources, seek out the local Area Agency on Aging, Alzheimer’s Association chapter, senior center, or even your relative’s faith leaders for ideas. A care manager can also assist. If local friends and family are involved, get clear about what help they can realistically provide to avoid potential miscommunications and resentment down the line. Online calendar tools, such as CaringBridge or Lotsa Helping Hands, can help you coordinate everyone from afar. As the disease progresses, continue checking in to see if adjustments are needed.

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Anemia in older adults

A diagnosis of anemia means the body is low in hemoglobin. This is the protein in red blood cells that carries oxygen through the body. Anemia is common in older adults but often goes undiagnosed. If your aging loved one seems unusually tired, weak, or just “not themselves,” it’s worth investigating if anemia is part of the picture. It’s often an indication that something else is amiss in the body.

The warning signs are typically vague symptoms that can easily be missed: fatigue, pale skin, shortness of breath, dizziness, or even confusion. The symptoms might come on gradually. But in the long term they can affect your family member’s ability to be active, think clearly, or follow their usual routine.

In a basic sense, anemia means the body is either not producing enough red blood cells or is too rapidly losing them. Especially in older adults, there can be multiple causes, including

• poor nutrition. Not getting enough iron, vitamin B12, or folate
• chronic health conditions. Kidney disease, cancers, stomach ulcers, and bone marrow disorders
• medications. Regular use of aspirin or nonsteroidal anti-inflammatories, leading to GI-tract bleeding
• injury. Accidents can cause slow, internal bleeding

If your loved one shows signs of fatigue or weakness, have their doctor do a “complete blood count” (CBC) test. If the results indicate anemia, ask the doctor to pursue the root cause(s) so that the full picture is considered and your relative receives appropriate treatment. Depending on the culprit, you or another caregiver may need to help your relative stick to a more balanced diet, manage medications carefully, and/or address an underlying disease. Make sure they get a follow-up appointment with the doctor to check their progress. With the right care, anemia is treatable and manageable.

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What is hospice?

 

Hospice is a service that offers specialized care for individuals nearing the end of life. But it is not just for the last few days. In fact, Medicare pays for months of in-depth services to patients and their families. For instance:

• Do you wish you had help with bathing your loved one?
• Are you worried about keeping your relative comfortable and out of pain or suffering?
• Do you wish you had 24/7 access to medical advice?

Hospice offers these services and more. Its goal is to support the patient and family emotionally, physically, and spiritually.

With hospice care, your relative receives regular home visits from

• a nurse who comes to manage pain, nausea, anxiety, and other symptoms
• a home health aide who helps with bathing or other personal care
• a social worker offering local resource guidance and emotional support, including to families after the patient has passed away
• a chaplain for spiritual support as the end nears

Such services are fully covered by Medicare if your loved one meets these eligibility requirements:

• An incurable condition
• A doctor’s assessment that they are not likely to live longer than six months
• A willingness to let go of curative treatment

With hospice, the focus is patient dignity and quality of life. It is the right choice for individuals who would rather enjoy the time they have left than face more ER visits and hospitalizations. Or are plain tired of dealing with the rigors and side effects of treatment that offers slim or no chance of recovery.

If you think your loved one could benefit from hospice care, ask the doctor a simple question: “Would you be surprised if [your relative] were to die in the next year?” If the doctor says “no,” then it’s wise to talk about if/when a hospice referral would be appropriate. In hindsight, many families say they wish they had signed up sooner.

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