Caregiver Connections
Helpful tips for family caregivers

Acting as a "human guide"

If the person you care for has a low-vision diagnosis, you are likely concerned about their ability to orient themselves and learn to move safely without falling or becoming injured.

Many people with low vision rely on the assistance of a “human guide.” You may already serve in that function for your loved one. Perhaps your relative also uses a cane. A cane gives them extra information about the environment. It also signals their impairment to others, increasing the chances for consideration and reducing the risk of their getting jostled.

Here are some tips for being an effective human guide:

• Walk one half step ahead of your relative. Have them grasp the back of your arm, just above the elbow, using the hand that is not holding a cane. By following a bit behind you, they have more lead time to react to obstacles or changes.
• Let your loved one set the pace to slow down or speed up. Maintain awareness of obstacles that are to the side where your relative is walking (consider yourself “extra wide”). Steer your loved one clear. Periodically look back to confirm that they seem to be comfortable with the journey.
• Announce upcoming changes, such as “stairs up” or “curb down.” Stop when you are close to the edge. Approach the edge straight on (perpendicularly) rather than at an angle. This will make it easier for your relative to judge the distance before the change. Step down/up one step and let your relative feel the edge with their toes before moving forward. If there’s a handrail, position your relative so it’s on the side of their free arm. You may want to stop and lift their free hand to the rail before continuing.
• In narrow passageways, place your forearm behind your back. This signals your loved one to get in single file and shift their grip down to your wrist. Once through the passageway, shift your forearm to facing forward again, and they can move back to their half-step-behind position.
• Never leave your relative in the middle of an open area—indoors or outside—with no furniture, wall, or other landmark to orient themselves.

Orientation and mobility specialists can teach your loved one the strategies they need to independently cope with the environments they encounter. Ask the doctor for a referral. Call to confirm that the services are covered by Medicare.

Early-onset dementia: Money issues

Finances are bound to be a concern if your spouse has received a diagnosis of dementia before age 65. As in many households, your partner’s job may cover important monthly bills. And perhaps essentials such as family health insurance or retirement funding.

In the early stages, your partner may be able to reduce hours or shift to a less stressful position. The longer they can continue working, the better, financially and for their self-esteem. Eventually, the dementia will make it impossible for your spouse to do their job. To avoid getting fired, your partner might talk to the doctor about “medical retirement” and applying for disability benefits. An estate planning attorney can offer wise counsel.

Research company policy concerning these issues:

• Family Medical Leave benefits. For large and midsize companies, federal law stipulates that qualified employees can take off up to twelve weeks per year for medical and family reasons. This is unpaid time. But there’s no loss of job or benefits. (Also check out this option for yourself. You may need to take time off for caregiving.)
• Early retirement. What does your partner have available by way of 401(k) or pension? Can they begin withdrawing funds before age 65 in the case of disability? What are the tax implications of early withdrawals?
• COBRA (health insurance). Your partner may be able to retain the company’s medical policy for up to thirty-six months after leaving. But you will need to pay for it yourselves.

Government resources

• Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) may be available from the government.
• Medicare is available for persons under age 65 once they have been on SSDI for at least twenty-four months.

A financial planner or accountant can also help you look at the larger picture. They can suggest tax deductions and ways to wisely access your resources. Consider working with a care manager to explore other available benefits and community programs.

Making the most of regret

Regret tends to be one of those emotions we’d prefer not to feel. Which is unfortunate, according to researcher Brené Brown. Her point is that “regret can be a fair but tough teacher.” If we don’t let regret mire us in the past—with self-blame and guilt—then we can use it to guide our future.

Regret is ultimately about living outside our values. Failures of courage are typically the most painful regrets: Failure to speak up, show up, be kind—to self or others.

As a family caregiver, you may find yourself often struggling against regret, as there’s always more that can be done or done better! But it’s important to be realistic and give yourself credit for all that goes right.

To help ease regrets, author Daniel Pink has made these suggestions:

• Talk to yourself the way you would a friend. If you heard your story from a friend, how would you respond? Likely you would be kind and comforting. Get past your harsh inner critic to harvest some wisdom from the situation.
• Share your regret with someone else. Telling your story out loud, or even writing about it, can “de-fang” its bite.
• Make amends? In some situations, you can come back to your loved one (or other) and apologize. Perhaps do something materially that can change the outcome.
• Take note of lessons learned. While you cannot undo the past, you can gain insight for the future. What was at the root of your behavior? If something similar were to arise, how will you remind yourself to approach it differently?
• “At least …” Take some time to recognize that it could have been worse. Appreciate that this was one instance out of many.

If regret is getting in the way of your sleep or daily happiness, consider talking to a therapist. They can help you find the lessons and move forward.