Family Caregiver Support

A doctor’s visit after a fall

A surprising number of conditions, from simple to serious, can cause an older adult to fall.

If you observed the fall or arrived soon after, find out if your loved one had a warning or felt dizzy beforehand. Any chance he or she fainted? Was the fall from stumbling on an obstacle? Or more from missing the bottom step on the stairs? These important clues can be useful to the doctor.

Even if there are no injuries, it’s wise to see the primary care provider and ask him or her to review the following:

  • Medications. Many common drugs have the side effect of dizziness. This includes medications for sleep, pain, and anxiety, as well as some antidepressants. If diabetes is poorly managed, that can cause dizziness. Faulty blood pressure medication dosing can also be at the root of a tumble.
  • Sitting vs. standing blood pressure. Some people experience a sudden drop in blood pressure when they stand. This could have led to your relative’s dizziness or fainting. 
  • Possible infections. In many older adults, a urinary tract infection or even pneumonia can develop without the “usual” symptoms. These can cause weakness or dizziness. Lab tests are needed for diagnosis and treatment.
  • Physical pain. Something as simple as painful joints or tight-fitting shoes can cause a change in gait or sudden shift in weight from one side to the other, leading to poor balance and a fall.
  • Vision. Cataracts, glaucoma, and macular degeneration impair vision. Any of these may cause an older adult to overlook a trip hazard.
  • Potential significant conditions. It’s important to rule out conditions of the heart, brain, and circulatory system that can result in a fall. For example, a mini-stroke, atrial fibrillation, or Parkinson’s.
  • Home safety. Ask for a home visit by an occupational therapist to identify any trip hazards and make recommendations.

Has your loved one fallen recently?
Falls are pretty serious. And someone who has fallen once is more likely to fall again. Give us a call at 1-800-897-3052, toll-free. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice can help you identify hazards and come up with a fall prevention plan.

What is MCI (Mild Cognitive Impairment)?

“Senior moments” are a normal part of aging.
They happen to everyone. We just don’t process things as quickly as we did in younger years.

Some people develop significant memory and thinking problems.
These people are eventually unable to live safely on their own. Typically, they have a stroke or develop Alzheimer’s or Parkinson’s disease.

And some people function at a level in between.
They can live independently and lead normal lives. But they just aren’t thinking as well as they used to. These people may have mild cognitive impairment (MCI). About 15%-20% of adults over age 65 have MCI.

Signs of MCI include greater than usual difficulty with

  • remembering recent events or scheduled appointments
  • following the thread of a conversation or movie
  • making decisions or following instructions
  • finding familiar locations
  • making well-reasoned choices

People with MCI are at greater risk for dementia.
Every year, 10%-15% of people with MCI will go on to develop dementia as compared with 1%-3% of the entire group of adults over age 65. Some people with MCI simply stay at this mild level of memory and thinking difficulty. Some even improve over time!

If you think your loved one may have MCI, schedule an appointment for a full examination. It may be MCI. Or the explanation could be as simple as a medication side effect or even sleep apnea or alcohol overuse. Follow up every six months to track changes.

If your relative has MCI, there is no treatment. Research shows, however, that strong circulation of blood and ongoing mental stimulation are very supportive of a healthy brain:

  • Manage blood pressure and heart health.
  • Increase physical activity.
  • Increase social and mental activity. People who are socially engaged or who have a hobby tend to keep their mental functions longer. Passive activities, such as watching TV, aren’t as helpful.

Are you concerned about a loved one’s memory changes?
Give us a call at 1-800-897-3052, toll-free. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice can help you get your relative the assistance that is needed.

If Mom is afraid of falling again

Many older adults who have fallen believe it is best to “stay safe” and avoid falling again by restricting their activities. Unfortunately, that’s the worst thing they can do! Inactivity is a path to reduced strength and mobility, which increases the risk of a fall and injury.

One of the most important things you can do is encourage your worried relative to stay up and moving. Here are some tips:

Talk about the fear
Although you don’t want to push, it’s important to talk with your relative about the risks of inactivity. This can pave the way to discussion of how to work with his or her (understandable) fear. Putting things in terms of your own concerns may be helpful. It sounds less blaming or demanding. For example:

  • “I’m concerned, Mom, that the fall you took in December has made you extra fearful. For sure, no one would want to go through that again! But I’ve done some reading and learned that being inactive actually makes you more likely to fall a second time. What can we do to build your strength and confidence?”

Offer strategies for change
Suggest ways that you can help your relative overcome his or her fear.

  • “Let’s talk with your doctor about what’s worked for other patients in this situation.”
  • “Let’s practice balance exercises together. Take a few laps down the hall. I’ll be here so you don’t have to worry.”
  • “Let’s ask for a referral to a physical therapist. They can give you tips about walking, how to better catch yourself, and how to get up safely if you did fall again.”
  • “Let’s take stock of what’s different now than when you fell. You were sick then.” (Or, “You’re no longer on that medication that made you dizzy.”).

Does fear of falling loom large?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we understand both sides! At Iowa City Hospice we can help you negotiate a graduated activity program that starts small to boost confidence and then builds upon success. Give us a call at 1-800-897-3052, toll-free.

When caregiving ends: Emotions

Waves of emotions
When a person you’ve been caring for dies, you are likely to have many feelings. Sometimes conflicting feelings. You may find that emotions wash over you unexpectedly, arising suddenly like a wave, and then subside. This is a normal part of life after loss.

  • Grief can be described as a combination of sadness and love. Your sadness may manifest in tears, in physical pains, in fuzzy thinking, in sleeplessness, or in oversleeping. Expect your sadness to retreat over time and on no specific schedule. The memories of love will remain.
  • Relief is another common emotion. Relief that your loved one is no longer struggling. But also relief that you no longer need to focus so intensely on their care. It’s not disloyal of you. It’s very human to feel a sense of release, even gratitude, that this chapter is over.
  • Guilt may also arise. None of us is selfless, kind, and loving at all times. We do the best we can. As you reminisce, forgive yourself for any lapses. Instead, acknowledge all that you were able to contribute.

The tender first year
There will be many “firsts” in your initial year after caregiving: first holidays, first birthdays. And if your loved one was a spouse, the first anniversary without them. As you cross these milestones, be prepared for a strong welling up of emotions. Expect this vulnerability—it is normal—and be gentle with yourself.

Overwhelm
If you find that it’s hard to get up in the morning and go through the day for a period of two weeks or more, talk to your doctor. Although depression might seem “normal” for the circumstances, it does not need to go untreated. It may be that a support group, talking with a therapist, or medication can help you through this rough leg of your journey.

Is caregiving drawing to a close?
As the Iowa City, Muscatine and Cedar Rapids expert in family caregiving, we at Iowa City Hospice know that this journey does eventually come to an end. If you see it on your horizon, you may already be experiencing some of these emotions. Give us a call at 1-800-897-3052, toll-free. You don’t need to go through this alone.

How Parkinson’s affects communication

If the person you care for has Parkinson’s, you may be surprised to discover the many ways the disease hampers communication. Voice problems alone affect 60%-80% of people with this condition. Low volume and slurred speech may make it hard at times for you to grasp what your loved one is saying. He or she may be slow to respond. Or words may tumble out very quickly and somewhat jumbled. Misunderstandings and frustration are common. Fortunately, both of you can take steps to help offset communication issues.

Facial masking
The face has 43 muscles. Their movement gives us expression. But Parkinson’s restricts facial muscles just as it restricts leg and arm muscles. The result is a stiff or “blank” expression. Typically, such a look indicates anger, boredom, or sadness. But with Parkinson’s, none of that may be true. Ask your relative what he or she is feeling about the topic you are discussing. It may be far from what their nonverbal cues are “telling” you.

To minimize problems:

  • Aim for one-on-one conversations or small groups
  • Choose a quiet room with few distractions and sit near each other
  • Encourage your loved one to take a deep breath before speaking
  • Don’t rush. Wait to give your relative a chance to respond
  • Listen patiently. Pressure to perform will make speech more difficult

Try speech therapy and singing
A speech therapist with special Parkinson’s training can provide facial and voice exercises. Ask in particular about an LSVT “Loud” program. Named for the Parkinson’s patient it was designed for, Lee Silverman Voice Treatment helps people recalibrate their impression of what “loud enough” is. The speech therapist may recommend helpful devices such as a portable voice amplifier, or singing as a fun way to practice breath control. Singing in a group also provides an opportunity for socializing, accomplishment, and fun!

Is communication strained?
It can be surprisingly difficult to interact with a loved one who seems stern or uninterested, even when you know it’s the disease. We at Iowa City Hospice have experience working with people with Parkinson’s. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we can guide you with tips and referrals to appropriate specialists. Give us a call at 1-800-897-3052, toll-free.

Genetic testing for Alzheimer’s

These days, most everyone is wondering if they are likely to develop Alzheimer’s disease. If someone in your immediate family has been diagnosed with the disease, you might feel at especially high risk. There is a test for an Alzheimer’s gene (APOE4). But it’s not 100% certain: Not everyone who has the APOE4 gene will get Alzheimer’s. And not everyone who has Alzheimer’s has this gene variant.

Should you get the test?
Since there is no cure, how would the outcome affect you?
Here are some questions to consider:

What would you do differently?
If you tested positive for the gene, what would you change? For instance:

  • Diet and lifestyle changes may contribute to lowering your risk for Alzheimer’s. These same changes might also lower your risk of heart disease and diabetes. Would you be willing to make these changes without knowledge of your Alzheimer’s risk?
  • Would you work longer and save more against future medical or caregiving expenses? Or would you retire earlier to make sure you have time for all those activities on your “bucket list”?

Who would you tell?

  • Are you emotionally prepared to handle a positive result? Consider other stresses in your life. Is this a good time to get tested? Do you have support?
  • How might your family react? Will it change your relationship with your partner? What about with your children?
  • Do you want your boss, insurance carrier, or doctor to know? Once the results are in your medical record, they may be difficult to conceal. This could affect your getting long-term care, disability benefits, or life insurance.

To test or not to test is a very personal decision. For support, consider seeking the advice of a genetic counselor. You might also check out an online community of people at www.apoe4.info who have tested positive for the APOE4 gene.

Are you caring for a family member with Alzheimer’s?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice know how stressful it can be. And sometimes scary, when you think about your own future. Give us a call at 1-800-897-3052, toll-free. Let us support you with your caregiving responsibilities.

Start a safe walking routine

Walking for exercise is recommended for every phase of life! Walking is the easiest physical activity to engage in, and it brings multiple benefits. The ability to get around readily is often the deciding factor in whether an older adult can stay living at home.

Many older adults are hesitant to walk much
If you sense resistance, ask your loved one about concerns. He or she may be afraid of falling, or of the neighborhood. Other common obstacles include foot problems, uncomfortable shoes, depression, or poor eyesight.

Begin by getting the doctor’s approval
Getting the thumbs up from the doctor may help your relative get going. Even short 10-minute walks are beneficial.

Review safe walking practices:

  • What to bring. Dress in layers. Wear loose-fitting, comfortable clothes. Choose flexible shoes that fit well and provide a nonslip sole. Carry a cell phone or other device for emergency help. Bring water. And bring any usual walking aids, such as a cane or walker, properly fitted to your relative’s size.
  • Where to walk. When weather permits, walk outdoors. Choose smooth-surfaced, well-lit, and low-traffic locations. This might be a walking path in the neighborhood or a nearby school or park. In bad weather or overly hot weather, try a shopping mall.
  • How to walk. Focus on deep breathing and good posture. The goal is natural, even strides with arms swinging easily. Eventually the pace should be brisk enough to raise the heart rate yet permit conversation. But in the beginning, you want it to be easy and fun so it will become an enjoyable habit.

Ideally, see if your loved one can find a walking buddy or walking group. Especially for people who are not used to exercise, it’s more fun when it’s part of a social activity.

We at Iowa City Hospice regularly witness the value of a walking routine. Walking promotes balance and well-being. In addition, it’s a great remedy for social isolation if done with others. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, supporting walking is one of the best ways you can support your loved one’s independence. To learn more, give us a call at 1-800-897-3052, toll-free.

Bad news

If a person you care for receives a serious diagnosis, it can feel like a gut punch—for everyone in the family. There is no way to sugarcoat such a reality. There are ways, however, to make the emotional journey less traumatic.

Grief AND joy
Even if your loved one has only months or weeks to live, laughter still happens. It’s not wrong or disrespectful to watch a funny movie together, or share silly memories. Your emotional roller coaster will include highs as well as lows. Celebrate joy when it’s at the forefront.

When is action needed?
After the initial diagnosis, encourage your loved one to pause before making big decisions. Even with cancer, waiting 2-3 weeks does not usually result in a worse outcome. Ask the doctor to be specific about urgency.

Common emotions
You may have heard of the “stages of grief.” It is not really a linear progression. Rather, for you and your family member, a variety of emotions may come and go, and come again. Here are some tips:

  • Anger. Blame, even “justified”—he smoked; she drank—does not reduce the person’s need for comfort and love. Leave anger and blame, including self-blame, at the door.
  • Denial. Don’t push “a dose of reality.” If your relative is minimizing the severity yet still moving forward with a well-considered plan—including a decision for no treatment—then let the decision stand. Denial has its place as a coping mechanism when even a desired strategy feels overwhelming.
  • Depression. With an incurable illness, hope changes over time. First, hope may be for a cure. Later, hope may revolve around visits with loved ones. Eventually, it focuses on comfort. If the person you care for expresses an ongoing sense of hopelessness, he or she may be depressed. While that might seem “normal under the circumstances,” depression should be addressed. Talk with the doctor. The illness may not be curable, but the discomfort of depression may be eased with counseling or medication.

Are you coping with a scary diagnosis?
Give us a call at 1-800-897-3052, toll-free. We at Iowa City Hospice have walked with many families on this journey. Whether it’s an acute condition like cancer or a diagnosis like Alzheimer’s or Parkinson’s that involves many years of caring, as the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we understand the pressures you are experiencing. You don’t have to do this alone.

Personal emergency response systems

A personal emergency response system (PERS) can provide peace of mind if the person you care for lives alone. There are many factors to consider when shopping for a device.

The need for a personal call button. Is your loved one at risk of a fall or heart attack? If so, you’ll want 24/7 emergency help. Or are you looking for backup for nonemergency situations: a car breakdown or home alone and not feeling safe?

Who receives the alert?

  • A professional on duty 24/7. Push the button and a human being answers. By arrangement, the professional at the other end of the line has access to your loved one’s medical history. He or she also knows who to call and in what order.
  • An automated response. You choose among three possibilities: direct to 911 (your loved one may hesitate to push the button), direct to a prearranged contact person (who may or may not be available), trigger a phone tree of people to be automatically called (if no one answers, the system alerts 911).

Where it works

  • Home use only. Good for the homebound. 
  • Home and away from home. Typically, these require a strong cell signal. If your loved one lives in a rural area, this type may not be a wise choice.

How easy is it to use?

  • Charging frequency. Does the system require a regular habit of charging every night? Is that realistic?
  • Practice is required! It’s not at all intuitive to the person using the device for the first time or two. Ask for a trial run and practice regularly after the purchase.

How ugly or obvious is it? Looks are important! If your relative doesn’t like it, he or she won’t wear it, and that defeats the purpose. Get your loved one’s thumbs up before making a final decision.

Looking for a PERS solution?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we can help you evaluate what features you need. At Iowa City Hospice, we understand your concerns. Give us a call at 1-800-897-3052, toll-free.

“Lie to my mom?”

Mom taught you to always tell the truth. But in the context of caring for someone with memory loss (dementia), honesty may not always be the best policy. There may be times when the kindest strategy—the one that reduces your loved one’s anxiety or fear—is to omit the truth or bend it a little. This is called “therapeutic fibbing.”

When your loved one is distressed

  • Try distraction first. Put your relative’s forgetfulness to work for you by focusing his or her attention on something else. For instance, if your dad is persistently asking to see his mother, don’t bother explaining that she died decades ago. Instead, validate his emotions and meet him in his memories. “You want to see your mother. Tell me about your mother.” Shortly, change the subject, even move to a different room. Then lead his attention to a favorite activity.
  • Bend the truth. If distraction doesn’t engage his attention, you might say, “Your mother is visiting her sister and will come see you tomorrow.” Or, if he wants to drive to the store, rather than reminding him that he can’t drive and the car was sold, say, “The car is in the shop, Dad. It should be back tomorrow.”
  • Omit the truth. If mom gets fretful about going to the doctor, consider: Does she need to know that that’s where she’s going? Perhaps instead, go to lunch and then “happen” to stop by the doctor’s on the way back. Was anything—other than her anxiety—lost in her not knowing ahead of time?

Therapeutic fibbing may not immediately appeal to you. Simply know it is a proven technique for relieving distress and bringing a confused loved one back to a state of tranquility. The underlying principle is that your relative benefits more from feeling safe and calm than from knowing “the truth.”

Not sure about therapeutic fibbing?
We at Iowa City Hospice understand. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we know that therapeutic fibbing is often difficult for family members. Give us a call at 1-800-897-3052, toll-free. There are many ways to ease distress in a person with dementia. We can help.