Family Caregiver Support

Nonverbal signs of pain

Dementia itself does not cause physical pain. But people with dementia still encounter pain, just like anyone else: headaches, arthritis, tummy aches. They just can’t describe it. They might even deny having pain when you ask because they don’t understand the question.

Learn the nonverbal signs of pain so your loved one doesn’t suffer. (Your knowledge of their pains before their memory loss condition will be helpful in identifying pain now.) Nonverbal signs of pain include

  • short, rapid breathing
  • unexplained sweating
  • grimacing, wincing, or frowning
  • moaning, whimpering, crying, or shouting
  • shielding a part of their body, curling up
  • rocking or self-soothing movements
  • tense or rigid body

Other signs include withdrawn behavior, increased confusion, trouble sleeping, inability to be comforted, restlessness or lashing out, refusal to eat. The more frequent these signs appear and the more intense they seem, the more likely there is a high degree of pain.

If you don’t see an obvious source of pain—a mouth sore, a reddened or sensitive area, a bleeding cut, or a fever—contact the doctor. Describe what you have been observing.

  • Can you think of a likely cause?
  • Are there patterns, such as time of day?
  • Is there swelling somewhere? A particular location of the pain?
  • Is your loved one constipated?
  • Is he or she urinating frequently?
  • What have you found that seems to help?

You and the doctor together can determine if there is a problem to be treated—and if not, what you can do to effectively manage your relative’s pain.

In the later stages of dementia, your loved one may not understand what’s happening, but he or she understands comfort. If a medical solution isn’t possible, do what you can to provide comforting doses of pleasure and kindness. Perhaps try a foot rub or a favorite song.

Want some help with pain management?
It’s difficult when a loved one with dementia is in pain. Let us assist you. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice can help you identify your loved one’s nonverbal cues. Give us a call at 1-800-897-3052, toll-free.

BPH: Weighing surgical options

Ever wondered why older men seem to need to urinate frequently? An enlarged prostate gland is likely to blame. The condition, benign prostatic hyperplasia, or BPH, is so common that it affects 90% of men by age 80.

The prostate gland is roughly donut shaped and is located below the bladder. The urethra, the “tube” that carries urine out from the bladder, passes through the prostate. As the prostate enlarges (swells), it squeezes the urethra, making it difficult for urine to flow through.

Symptoms of BPH include

  • increased frequency and urgency of urination
  • weak urine flow
  • leakage, or inability to control urination

While BPH is not dangerous, it can have a powerful impact on quality of life. Affected men feel they cannot stray far from a bathroom. And they worry about the embarrassment of an accident. BPH also causes frequent nighttime urination, which can bring on insomnia, fatigue, and depression.

Although medication and lifestyle changes can be effective, if symptoms become too imposing, the doctor will probably suggest surgery. There are many different types. Review these questions with the doctor as you help your loved one evaluate the options:

  • What kind of improvement can be expected? How soon after the procedure will symptoms be relieved?
  • How long will the benefits last? What is the likelihood of needing retreatment in five years?
  • What is the recuperation like? Pain? Bleeding? Swelling?
  • What are the risks or complications? How likely are they to happen?
  • Can this procedure occur on an outpatient basis, or will hospitalization be required?

There is no one surgery that fits all. And new approaches are being developed all the time. The goal is to find the surgery that brings the greatest relief for the longest period of time with the lowest likelihood of complications.

Do you have a relative struggling with BPH?
He may not feel comfortable talking about the problem. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice have helped many families address this difficult and sometimes embarrassing condition. We can help. Give us a call at 1-800-897-3052, toll-free.

Getting the most from doctor visits

Time with a doctor is precious—and that creates pressure to make the most of each visit. Whether your loved one’s next appointment is in person or through telehealth, a little preplanning will go a long way to making it a productive session.

Here are some helpful tips:

  • Identify the goal. Are you seeking a diagnosis for new symptoms? Deciding on a specific treatment? Checking in after hospitalization? Determine what you want to get out of the meeting. Don’t assume the doctor has the same focus in mind.
  • Prioritize the questions. Write down your specific questions. You may have time to ask only three, so put the most important questions at the top. And be sure to ask them!
  • Clarify your role. Will you be physically attending the appointment? Joining the session remotely? Does your loved one want you to spearhead the conversation? Or is your role mostly to take notes and point out any unasked questions?
  • Ensure optimal communication. If your loved one wears glasses or a hearing aid, double check that they are handy for the visit. Extra batteries, too!
  • Give pertinent information. If you are updating the doctor with new information, be specific and detailed when describing recent symptoms and your sense of related events.
  • Provide a list of all medications, including herbs and over-the-counter preparations. Collect them in a bag that you have at the ready to show to the doctor or intake assistant.
  • Special considerations for telehealth. If this is a telehealth visit,
    • work with the staff ahead of time to be sure your loved one’s computer can connect properly. Make sure the video is clear and the audio functions work well for both hearing and speaking.
    • choose a quiet, private place for the visit. Ideally a room with privacy to respect your loved one’s confidentiality. Also, with minimal noise (no TV in the background) to reduce problems hearing or concentrating.
    • pay attention to lighting. You don’t want light behind your relative because that will cast them in silhouette. Light in front needs to be adjusted to avoid glare on glasses.
    • be ready with devices. Your loved one may need to have a blood pressure cuff nearby, or a thermometer. You may also want to have a smartphone handy because you may need to take a picture of a wound or rash.

Worried about doctor visits?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice recognize that it’s difficult to get the answers you need. Doctors are busy, and telehealth appointments may be uncharted territory. Give us a call at 1-800-897-3052, toll-free. We can help you with the advocacy skills you need to make sure your loved one gets the best possible care.

“But I wasn’t there when she died”

Many of us hold unconscious covenants with our kin. Among the most poignant, perhaps, is a commitment to “be there” when death is near. As adults, we may feel an obligation, and an honor, to be with our parents as they leave, just as they helped us enter. With our spouses, the ultimate commitment—’til death do us part—often translates symbolically to a promise to be present at the deathbed.

But sometimes life interferes. You may be on your way when your loved one expires. The result of travel woes or just timing that didn’t work out as you hoped. In recent months, many families have found themselves separated from a loved one’s bedside by public safety orders. Due to virus risk, many hospitals set policies that prohibit visitors.

Whatever the circumstances, those who are not able to be at a loved one’s bedside grapple not only with their grief, but also tremendous guilt. There is often a sense of having abandoned a loved one at their time of greatest need.

How to cope with these feelings? Hospice chaplains remind us that the relationship never dies. Even if a person dies alone, all the love given is still with them. Love transcends distance and continues beyond death. The relationship doesn’t die. It simply changes.

And yet, those who miss being at the bedside often feel distressed at having lost the opportunity to express important sentiments. The distress may be even greater if the relationship was difficult. In truth, however, dramatic deathbed conversations are a Hollywood illusion. Most people are not conscious the last few hours or even days before death.

Hospice staff report that writing a letter can assist with positive closure even after a loved one’s passing. They suggest a letter elaborating on these five statements as if you were talking at the bedside:

  • “Please forgive me.”
  • “I forgive you.”
  • “Thank you.”
  • “I love you.”
  • “Goodbye.”

Are you feeling guilty after a loved one’s passing?

You certainly are not alone. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice see this a lot. Give us a call at 1-800-897-3052, toll-free. Let’s talk.

Caregiving as a team

Millennials and Gen Xers are using strategies that might benefit family caregivers of all ages. Nearly half (47%) of adults in their 40s and 50s now find themselves “in the sandwich.” They serve as primary support people for an aging parent. Plus, they have children who are still at home or at least financially dependent.

One of their strengths is spreading the workload. A recent report shows that millennial and Gen X family members use technology to support their elder caregiving. They also embrace more of a team approach than their older caregiving peers do. Take a page from their playbook. To better share your load, consider these ideas:

  • Weekly or monthly team check-ins. Use phone, text, email, or video conferencing. Report about doctor visits. Share observations and concerns. Discuss issues that need to be handled. Create a joint caregiving calendar on Google or use an online platform such as or
  • Whole-picture support. Ease the primary caregiver’s total load, not just tasks related to Mom or Dad. For instance, someone might mow the primary caregiver’s lawn. Or take on a child-related need.
  • Trade off duties. Life happens! Perhaps one person usually drives Dad to the doctors. If they have a big work project due, someone else can take on transportation for a while.
  • Provide breaks. Primary caregivers need time off—to preserve marital harmony or simply re-center. This is especially important if the aging parent lives with the primary caregiver. Other family members might invite Mom or Dad for a visit. Or could chip in to treat the primary caregiver to an evening out. A weekend getaway.
  • Help takes many forms. It can be financial, physical, or emotional. One person may have less time but more money. For another, it may be natural to call Mom or Dad regularly to provide social and emotional support.

Looking for a team approach?

Whether you have siblings or not, we at Iowa City Hospice can help. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we can help you get other family members on board. Or to find the support you need with community programs and paid assistance. Give us a call at 1-800-897-3052, toll-free.

Repetitive questions

“When are we going out?” A reasonable question under normal circumstances. But if the person you care for has dementia, you may get this question multiple times in an hour. Aargh! Indeed, repetitive questions are one of the top irritants mentioned by family caregivers whose loved one has dementia.

The repetitive questioning isn’t done intentionally, of course. Your family member simply can’t remember the answer you gave them even just a few minutes before.

  • Look for the emotion behind the question. People with dementia often feel anxious, confused, and left out. They don’t understand what is happening around them. The person asking “When are we going out?” is likely experiencing significant worry about change.
  • Remain calm and reassuring in your answers. A frustrated reply makes their anxiety worse. The most reliable remedy is to provide reassurance in a calm voice and with a gentle touch.
  • Write out the answer: “At 3:00 this afternoon, we are going to the doctor’s.” Post the reply somewhere obvious. The next time he or she asks, you can say “Check the white board by the refrigerator. The answer is there for you.”

Other tips:

  • Remove triggers in the environment. For example, avoid displaying special “going out” clothes until it’s time to get dressed.
  • Avoid discussing an event that is going to happen in the future. Instead, let your loved one know that day or just the hour before.
  • Keep simple tasks at the ready as a distraction. Folding the laundry, sorting screws, sweeping the porch are examples of activities that engage attention and allow your relative to feel helpful.

If you find yourself fed up and getting angry, leave the room. Take a few minutes to compose yourself. Repetitive questions are normal in dementia. Best to accept the fact and train yourself to safely let off steam away from your relative.

Repetitive questions getting you down?

It sounds like you could use a break. Give us a call at 1-800-897-3052, toll-free. We at Iowa City Hospice are the Iowa City, Muscatine and Cedar Rapids experts in family caregiving. We can provide you with strategies and experienced assistance to reduce the frustrations and heartbreak of caring for a relative with dementia.

Help prevent choking

Swallowing involves the coordination of many muscles in the mouth and throat. The action pushes chewed food down toward the stomach. At the same time, the throat needs to close off the windpipe to the lungs.

Between 15% and 20% of older adults have trouble swallowing. Choking while eating or drinking is the fourth-leading cause of accidental death at home for people over age 65.

People with dentures or dental problems are at risk for choking because they can’t chew their food as well. People who have had a stroke or any health problem affecting the nerves and muscles around the neck are also at higher risk.

Signs of a swallowing problem include coughing after a swallow or a change in voice after a swallow. Some people with swallowing problems describe a feeling as if a pill has gotten stuck going down.

If your loved one seems to have swallowing problems, ask the doctor to order an evaluation. Speech therapists commonly do these evaluations and can help with special exercises and dietary suggestions.

Common causes of choking include

  • eating too fast;
  • taking big bites and not chewing food well;
  • walking, talking, or laughing while eating;
  • drinking alcohol before or during meals.

If the person you care for tends to choke, changing the habits listed above can certainly reduce the risk. Other techniques that can be helpful include

  • sitting up straight during the meal and afterward;
  • avoiding thick, sticky foods, such as peanut butter or caramel;
  • changing medications that contribute to dry mouth;
  • tucking the chin when swallowing.

Are you concerned about choking?

At Iowa City Hospice we know this is a serious matter. As the Iowa City, Muscatine and Cedar Rapids expert in family caregiving, we can help you address daily life changes to help reduce the chances of choking. Give us a call at 1-800-897-3052, toll-free.

How to beat “decision fatigue”

Caring for an ill family member often requires taking on the role of “decision maker.” Sometimes it’s multiple mundane decisions (Should you ask your sister to do the shopping? Is this a good day to shower Mom? Now or after lunch?). And sometimes it’s several important health decisions, all in a short period of time.

Every decision is brain work
Decision making involves considering options and looking at tradeoffs, and then making a choice. Research has found these are particularly demanding mental tasks. So when you have a lot of decisions to make over the course of a day, your brain gets weary. That is called “decision fatigue.”

Decision fatigue affects our behavior
You are unlikely to feel your brain’s fatigue; it’s not like physical fatigue. But weary brains, like weary bodies, get lazy. In fact, a weary brain resists expending all the energy that is required to make a careful decision. Instead, researchers report, when we are mentally fatigued we resort to shortcuts: we make choices quickly and impulsively or we make no choice at all.

With that kind of decision making, we’re likely to have regrets later (even “no choice” has consequences).

Set the stage for good decision making
We can all make sound decisions. It isn’t about how smart you are. It’s about ensuring your brain is primed for the task.

  • Early is better. Make important decisions before fatigue sets in. For example, try to schedule important meetings or doctor appointments early in the day.
  • Food is fuel. Food sends glucose to the brain, and that helps restore quality thinking any time of day. Aim to make decisions after a meal or a nutritious snack.
  • Routine is wise. Establish a schedule for as many routine tasks as possible. That saves your brainpower for decisions that are truly important.

Too many decisions?

We at Iowa City Hospice understand! Making decisions on another’s behalf can be exhausting. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we can help guide you so you don’t feel so alone with the responsibility. Give us a call at 1-800-897-3052, toll-free.

Osteoporosis: What you can do

If you are concerned about a loved one’s osteoporosis—brittle bones—it’s a good idea to bring this up with the doctor. He or she will likely discuss various medicines that can help. In addition, changes in daily life outlined below can go a long way to making stronger bones. Consider:

Diet: There are two key nutrients.

  • Calcium. The best food sources are low-fat dairy products; dark green leafy vegetables; canned salmon, mackerel, or sardines (with bones); and tofu. Women over age 50 should consume a total of 1200 mg of calcium per day. Men need 1000 mg/day until age 70. Then they too should get 1200 mg/day. A supplement is fine. But be sure to pick a dose that factors in the calcium your relative already receives from food. More than 2000 mg/day may increase the risk of heart disease and kidney stones.
  • Vitamin D. Exposure to sunshine yields vitamin D. But only when sunscreen is not used (no free lunch!). Look for foods such as milk that have been fortified with vitamin D. Or get a supplement. Adults age 51–70 are advised to take 600 international units (iu)/day. Those over age 71 need 800 iu/day. African Americans don’t absorb vitamin D well through the skin, so 2000 iu is the recommended supplement. Most people can safely take up to 4000 iu/day. 

Strength exercises. Weight-bearing exercise works with gravity to produce strong bones: Brisk walks, hiking, dancing, climbing up stairs. Resistance training also helps: Lifting weights or using exercise bands. Talk to the doctor about the safest way to build up strength.

Lifestyle changes

  • Get up off the couch! A sedentary lifestyle leads to brittle bones.
  • Limit alcohol to no more than two drinks/day. Alcohol kills bone cells and leaches calcium from the bones.
  • Stop smoking. Smokers’ bones heal more slowly.

Concerned about brittle bones?

Sometimes it’s hard for a relative to prompt an older adult to make diet, exercise, or lifestyle changes. We at Iowa City Hospice understand family dynamics. As the Iowa City, Muscatine and Cedar Rapids expert in family caregiving, we can help you support but not nag. It’s a fine line! Give us a call at 1-800-897-3052, toll-free. We’re happy to put our expertise to work for you.

What’s in an Alzheimer’s test?

When symptoms of memory loss or confused thinking arise, it’s natural to wonder: Is it Alzheimer’s? There is no specific test for Alzheimer’s disease. To achieve a diagnosis, doctors typically order a variety of tests. Most of the tests are to rule out the many, many conditions besides Alzheimer’s that can cause similar symptoms. Some of these have cures. Some do not.

A primary physician is likely to order three types of tests:

  • A medical exam with lab work. The doctor will review your loved one’s medications and take a thorough family history. Blood and urine tests will check for problems with the thyroid, liver, and kidneys. Your relative also will be asked to outline what symptoms began and when, and to answer questions about alcohol and drug use and other lifestyle habits. (You may be asked to attend this session.)
  • A neuropsychological evaluation. This is a series of tests involving word questions, drawing, and puzzles. The tests assess the functioning of different parts of the brain to discern where there are impairments: Are there problems with memory? With the ability to plan? With language? With math? With judgment? Additional survey questions help rule out depression or other mood disorders that cloud thinking.
  • Brain imaging. A CT and/or MRI scan can detect signs of a tumor, stroke, or head injury. A PET scan highlights parts of the brain that have less activity than others.

Once the results are in, your family member can meet with the primary physician to review the findings. Again, the doctor is likely to want you to be present. (Your relative may need help following the discussion. Also analyzing the pros and cons of recommended treatments.)

There is no cure for Alzheimer’s itself. But the sooner you have a diagnosis, the sooner you can act. With treatment if it’s one of the curable dementias. Or medication to slow the progression of an untreatable condition. An early diagnosis also gives you time to make plans for the future.

Are memory or thinking problems getting in the way?
If your loved one is having difficulty with memory or logical thinking, it’s a good idea to talk to the doctor about it. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice know this can be a scary time. Let us help you through this journey. Give us a call at 1-800-897-3052, toll-free.

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