Family Caregiver Support

Coping with vision loss

It’s common for those newly diagnosed with a vision-loss condition to feel anxious and depressed. Understandably so! They worry about losing their independence. Also, that they will need help with many activities of life. This in turn suggests a loss of privacy. Many newly diagnosed persons report a sudden lack of confidence and feelings of worthlessness.

If this describes your loved one, allow them time to grieve. Time to mentally and emotionally adjust. They might even benefit from the assistance of a counselor or therapist.

And take heart. There is good reason to believe that your loved one’s attitude will come around. A survey of older adults who are living with significant vision loss revealed that 84% report feeling more positive and confident now than they did when they were first diagnosed.

Those respondents who expressed a willingness to adapt continued to lead full and rewarding lives. They felt they were still in control. Paradoxically, such resilience was best achieved by those who reached out for help.

Here’s what those with vision loss recommended for people newly diagnosed:

  • Join a low-vision support group. Learn that you are not alone. At the least, find a person with the same vision-loss condition to share concerns and solutions.
  • Learn about the condition and advocate for your needs.
  • Ask the doctor for a referral to a low-vision specialist for adjustment classes. For instance, adaptive living skills to learn how to prepare meals and modify the house for independence. Or orientation and mobility classes to learn balance and navigation.
  • Be open to new devices and technology.
  • Find out about local vision support services.
  • Be patient. Take one day at a time.

As a family caregiver, you will have your own emotional response to the diagnosis. It’s natural to want to “help.” Rather than do things for your loved one, help them stay independent and in control of their life. Doubtless they will experience frustration and challenges. You will need to be patient and encourage them to figure out how to do things anew. Demonstrating your belief in their ability to overcome problems will be the greatest service of all.

Is your relative facing a low-vision diagnosis?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice understand that this is a condition that affects the entire family. You don’t have to go through this on your own. Give us a call at 1-800-897-3052, toll-free.

What is “cremation authorization”?

With National Healthcare Decisions Day coming up on April 16, it’s good to review who your loved one has chosen as their healthcare power of attorney (sometimes called a “proxy” or “agent”). This is who will make decisions for them when they are no longer able to do so themselves. Often this occurs in end-of-life situations. The proxy is identified in a legal document called an “advance directive.”

Oddly enough, the healthcare proxy is not necessarily empowered to make decisions after the death, such as funeral arrangements.

If your relative prefers cremation and has made “preneed” arrangements with a funeral home, a “self-authorization” for cremation may have been signed. The funeral director will have that on file. If so, get a copy and store it with the advance directive. (Wills or trusts may not be read for several days or weeks after a death. Decisions about burial or cremation must be made before then.)

Be forewarned that special paperwork may be required for cremation. It is not unusual for this choice to generate family conflict.

To address potential lawsuits, funeral directors often need a “cremation authorization form” signed by the next of kin. Typically, the spouse. If no spouse, then child(ren). Note: If there is more than one adult child, it may be that all, or at least a majority, need to sign. Rules vary by state. Talk to a funeral director in the state where your loved one lives.

Some states do turn to the will or living trust to authorize a decision maker for disposition of the body. The executor of the will, or the trustee, may be the one who has the power to sign off for cremation.

Whoever the legal decision maker is, be sure they know your loved one’s wishes.

Does your relative prefer cremation?
Few people realize that separate from the advance directive there is also important funeral paperwork that needs attention. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice encourage families to talk through these issues well ahead of time. Having paperwork in order is optimal. But having the conversations ahead of time is the most important step. Want help bringing up the subject? Give us a call at 1-800-897-3052, toll-free

Is Dad taking his meds “as directed?”

Did you know that nearly half of adults taking prescription medications for a chronic condition make errors in taking their meds? The most common problem areas:

  • Memory. Forgetting to take a medication
  • Organization. Failing to order a refill in time and running out
  • Convenience. Being away from home and missing dose(s)
  • Side effects. Experiencing unpleasant reactions
  • Cost. Difficulty affording the drug

Any deviation from what’s prescribed is risky. This is especially true for older adults in fragile health. Here’s what you can do to support your loved one in following the doctor’s orders.

  • Develop and monitor routines. A multiday pillbox may be all that’s necessary to resolve memory issues. Bring one as a present, along with your promise to keep the box filled and refills ordered on time. If more active reminders are needed, consider a “talking” automated pill dispenser or an app that sends an alert when a dose is needed.
  • Collaborate with the doctor. When you visit your relative’s primary care doctor, bring in every prescription and over-the-counter (OTC) drug being taken. Review the purpose of each drug. Are all of them still needed? Can the treatment be simplified? Perhaps there are alternatives that involve fewer doses.
  • Report problem side effects. Provide details about side effects that you and/or your relative have noticed. Simple changes in diet or the time a med is taken may help.
  • Address cost issues. Let the doctor know if cost is a problem. A generic version may be available. Or the doctor may have samples. Price shop among local stores for prescription and OTC drugs. Consider mail order.
  • Connect with the pharmacy. The pharmacist can provide easy-off lids, large print on labels, and drug information. They can often help clarify doctor’s orders and offer advice concerning side effects.

Are you worried about medication problems?

As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice counsel families to be open minded and not assume it’s just stubbornness if an older relative does not take meds as directed. The reasons might surprise you. And they are often easy to fix. Give us a call at 1-800-897-3052, toll-free. Let’s talk.

How to read an Explanation of Benefits

Before your loved one pays a medical bill, wait for the insurance’s Explanation of Benefits (from Medicare, this is called a “Medicare Summary Notice”). This document indicates what services were billed by which providers for what days. It is an important summary to help you catch errors, duplicates or, sadly, even identity theft or fraud.

These are NOT bills! But they do indicate how much your relative may need to pay beyond what their insurance covers.

These documents outline

  • the services and/or supplies billed by healthcare providers. Each service or supply will have a five-digit code.
  • the “approved” fee for each service/supply
  • what the insurance has paid for each service/supply
  • the amount your relative may owe

Note: If your loved one has a supplemental policy, wait until you receive that EOB and the final bill from the provider before making any payments.

Compare the documents carefully. Ensure your relative pays only what they owe!

  • Keep a record and receipts for medical expenses with each visit. This includes doctor’s appointments, lab tests, prescriptions, and other supplies.
  • Verify that the names are correct (your relative, the doctor, clinic, hospital, etc.).
  • Check that dates, codes, and service descriptions match your records.
  • Look for the difference between the amount billed and the Medicare “approved” fee. The service provider must accept the approved fee. Providers are required to tell patients in advance if patients are expected to pay the difference.
  • Compare the amount each document says is due from your loved one. This could be for deductibles, copayments, out-of-network fees, or uncovered procedures.
  • If you see errors or if coverage was denied, contact the healthcare provider or the customer service department of the insurance. If it’s a billing error, a correction can be filed.

Are you worried about costs?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice understand that everyone has a budget. If you would like to learn how we might save you time and money, give us a call at 1-800-897-3052, toll-free.

Maximizing your resources

When we think of “resources,” as family caregivers we might think of money. Or time. But there is another resource we’re using every day that is often overlooked: Emotional energy.

Our emotions and mood contribute mightily to our ability to deal with challenges. When circumstances are difficult, it’s hard to generate enthusiasm or initiate projects. Truth is, even at a most challenging time, it’s likely there’s still something positive in your life. If you can focus there, you can kickstart your resilience and your capacity for addressing problems.

It isn’t that you need to don rose-colored glasses. But training your brain to realistically perceive the good experiences that exist—even on dog-wearying days—allows you to build an emotional reservoir. Like an emotional savings account. 

To build your emotional reserves

  • Acknowledge past coping strategies that were constructive. This probably isn’t the first time you have dealt with difficulties. How have you managed in the past? What can you use again now?
  • Savor compliments received from others. Past or present, those around you have probably commented positively at one time or another.
  • Consciously train yourself to notice what is going well now. No matter how small. It’s like people who train themselves to notice money on the sidewalk. They find coins and even paper bills that others overlook.
  • Expand the experience. Take a moment to concentrate on the good thing. Don’t discount it to focus only on your worries. Stop and savor that positive. What physical sensations, what specific emotions, are associated? “See” the moment in your mind’s eye. The more you linger with it, the more lasting power it has.
  • Name it. What is pleasant about it? What is unique about it as an experience? Which of your personal qualities does it highlight? Giving it particular meaning strengthens the positivity muscle in your brain. Journal about it for added staying power.

Drawing upon your savings account
When you next find yourself frustrated or perplexed, pause. Bring to mind a positive experience—perhaps a time when you received appreciation, felt accomplished, or exuded compassion. Use the emotional energy of that memory as the boost you need to find a new approach to the challenge at hand.

Feel like you are running on empty?
You are not alone! As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice see many family members who are unable to recognize internal resources and strengths they possess. Let us help you build your emotional reserves. Give us a call at 1-800-897-3052, toll-free.

When kidneys fail: Dialysis?

If the person you care for has chronic or advanced kidney disease, dialysis will come up as a treatment option. This procedure mimics the cleansing function of the kidneys. It mechanically “rinses” the blood to take out toxins.

Dialysis is not a cure for kidney disease. But it does buy some time. People often live for years on dialysis. The treatment is quite intrusive, however. Permanent access into the body must be created. There are food restrictions and medications. Plus, your loved one must live by a strict dialysis schedule. There are many side effects to manage. And dialysis will rely heavily on the assistance of family members.

Some forms of dialysis may be completed at home. Others require travel to a facility. Home-based treatments allow for more flexibility of scheduling and a more normal life. There may be fewer food restrictions. And your loved one may feel better for a longer period of time. Home-based treatments require extreme self-discipline. Ongoing help and training of family or friends is critical.

Facility-based treatments typically occur three times a week. Each visit lasts for about four hours. Some patients enjoy socializing with others receiving treatment. Another bonus is regular check-ins with a specialist. On the down side, your relative will need transportation both ways. And recovery time afterward. Plus, they will have a period of declining energy before the next scheduled session.

All types of dialysis are expensive. Original Medicare pays for 80%. Check your loved one’s insurance to verify what other coverage is available for supplies, equipment, and services.

Before kidney disease becomes advanced, talk with the doctor about options. You may want to explore medical management without dialysis. Talk as a family about the daily impact of the disease, treatments, and side effects on all of you. What is the quality of life with dialysis? Without?

Does the person you care for have advanced kidney disease?
If so, you have many choices ahead of you. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice recognize that the decision to go forward with dialysis will greatly affect you as a family caregiver. Let us help. Give us a call at 1-800-897-3052, toll-free.

When high blood pressure goes untreated

Don’t confuse a lack of symptoms with a lack of risk. A person with high blood pressure usually feels “just fine.” And that makes it easy to also feel unconcerned. Your loved one may not be motivated to treat high blood pressure. Or may want to stop taking medications because they don’t notice any difference.

But uncontrolled high blood pressure takes a toll on the body, increasing the risk of

  • heart attack. Blood flowing at high pressure makes tiny tears in the artery walls. The resulting scar tissue narrows and hardens the arteries. A heart attack occurs when plaque or a blood clot cuts off blood flow in the heart.
  • heart failure. Narrow arteries force the heart to work harder to pump blood throughout the body. Such overwork leads to an enlarged heart, extreme fatigue, and, ultimately, to heart failure.
  • stroke. When an artery in the brain gets too narrow or clogged or bursts because it has been weakened, the result is a stroke. A stroke can lead to loss of muscle control on one side of the body, inability to talk, or even to dementia (problems with memory and reasoning).
  • kidney damage. The kidneys put out a hormone that helps the body keep blood pressure under control. In a vicious cycle, when the arteries in the kidneys become damaged, the kidneys are less able to produce this helpful hormone.
  • vision loss. High blood pressure puts pressure on the optic nerve. This can lead to dulled and/or double vision.

Keeping an eye on blood pressure is a smart way to safeguard health! Although high blood pressure isn’t curable, it can be managed. Sometimes through changes in lifestyle or with prescribed medication taken as directed.

Is blood pressure being ignored?
You would not be the first family member to feel exasperated by a loved one’s disregard for the dangers. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice talk with many adult children who can’t get their parents to follow the doctor’s orders. The truth is, you can’t make them do anything. But there are ways to approach the situation that tend to result in some changes. Give us a call at 1-800-897-3052, toll-free to learn more.

Dementia communication: Speaking

Nearly every type of dementia compromises the ability to process language. It’s harder for the affected person to grasp words, to comprehend their meaning, and to track what’s being said. Communication with your family member may seem a frustrating struggle. Still, aim for interactions that maintain a positive relationship.

Your emotional tone is key: Pay attention to your body language, gestures, facial expressions, tone of voice, and volume. What will linger for your relative is how they felt about the interaction more than what was said.

To help your relative, speak slowly, calmly, and patiently. Avoid long sentences, slang, or idioms (“Keep your eyes peeled”). Try to avoid comments that might leave your loved one feeling less-than or stupid.

Conversation tips

  • Don’t talk as if your relative is not there­—for example, at the doctor’s office.
  • Avoid correcting or arguing. Unless it creates danger, go along with their view when possible. Pointing out their deficits just engenders shame and mistrust.
  • Keep stories or topics simple. They can’t follow a complicated plot.
  • Avoid questions about recent events, such as “What did you do yesterday?” Focus instead on the far past and their feelings, as in “What did you used to do for fun in the winter?”

 Informing or getting things done

  • Do “with,” not “to” or “for.” To support cooperation, sit at the same eye level, make eye contact, touch or hold hands, and share what you would like them to do. They need to feel they still have control in their life.
  • Offer binary choices: “yes/no” questions or two choices (“Would you like coffee or tea?”) rather than open-ended questions (“What would you like to drink?”). Consider offering your preferred option last. It’s often the one chosen.
  • Visual cues are helpful. Show them the choices so they can point.
  • Keep instructions simple, one step at a time.

Having trouble being understood?
Conversation is usually a two-way street of speaking and listening, except when it comes to dementia. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice know how frustrating it is to try to get information across. Let us help. Give us a call at 1-800-897-3052, toll-free.

Age-related macular degeneration

Age-related macular degeneration (AMD) is a very common condition affecting the retina of the eye. It causes blurry vision and dark spots in the center of the visual field. This makes it challenging to read, drive, and recognize faces. Although AMD typically gets worse over time, it does not lead to total blindness. It is, however, a leading cause of legal blindness (vision of 20/200 rather than 20/20).

Peripheral vision. AMD permanently reduces vision in the direct line of sight. To compensate, your loved one can learn to rely on peripheral vision (to the side). We are all used to peering directly at an object to see it better. With practice, though, many with AMD adapt to looking from the side—even to read or watch TV.

Ways to slow the progression

Several lifestyle changes have proven effective. You cannot make your loved one adopt them. But you can ask if they would like support and how best you can help.

  • Stop smoking. Research shows this is one of the best ways to slow progression. Reducing or eliminating second-hand smoke is also quite effective.
  • Eat green leafy vegetables daily and fish twice a week. Spinach, kale, and collards provide antioxidants. Salmon, sardines, mackerel, and tuna reduce inflammation.
  • Take the AREDS supplements. A study by the National Eye Institute (Age-Related Eye Disease Study) revealed key daily supplements that slowed—and in some cases halted—AMD. Specifically, 500 mg of vitamin C, 400 iu of vitamin E, 10 mg lutein, 2 mg zeaxanthin, 80 mg zinc, 2 mg copper. Check with the ophthalmologist for reliable sources of this combination.
  • Reduce simple sugars and starches. Best to avoid those that go directly to the bloodstream: Candy, soda, potatoes, white rice, and baked goods with white flour. With the exception of watermelon, fruits are fine. Their sugars take a while to digest.

Does your loved one have macular degeneration?
We at Iowa City Hospice recognize this is a difficult diagnosis. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we understand how this disease affects the entire family. You don’t have to go through this alone. Give us a call at 1-800-897-3052, toll-free.

“For better or for worse …”

Are you supporting a relative who is also a caregiving spouse? Many long-lived couples see it as both a duty and a privilege to walk that last mile with their partner, fulfilling vows of “for better or for worse.”

That does not mean the journey is easy. Caregiving partners often experience physical challenges as they assist with bathing and walking. And there are crises, such as falls. Plus, nearly two-thirds of caregiving spouses have medical conditions of their own. In fact, the “well spouse” is often in danger of a steeper decline than the more obviously ill partner.

And there is the emotional toll. As the well spouse becomes more a nurse and the ill spouse less of a contributing partner—especially with multiyear conditions such as dementia—conflicting emotions emerge: Anger, frustration, sadness, resentment, guilt. Partners also mention loneliness with decision making, and the disheartening grind of watching a loved one suffer.

How can you help?

  • Problem solve together. Identify issues, note what needs to be done, and create action steps.
  • Take action. Assist with practical tasks and get outside help.
  • Provide a nonjudgmental ear. Name and validate feelings: “It’s natural to feel resentment (or ***). Anyone would.” Reassure your well parent that you are there for emotional support.
  • Offer respite. The well spouse needs breaks! Plan or sponsor an activity. Remove barriers to taking time off.
  • Facilitate doctor appointments. Make sure Dad is taken care of so Mom can go to the doctor, get needed lab tests. Maybe stop for a coffee before coming home.
  • Promote resilience by discussing how the well partner has made it through other life challenges. Remind them they still have those inner qualities to draw upon.
  • Support the ill partner to acknowledge positives. Celebrate anniversaries and birthdays with joy. Any expression of gratitude and love is a profound contribution, even just a happy comment about the day.

Noticing strain in your caregiving parent?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice too often see the “well spouse” crumble under the weight of caring for a partner. Don’t wait for them to end up in the hospital! Give us a call at 1-800-897-3052, toll-free. Let’s work together to support both your parents through this journey.

Iowa City Hospice