Family Caregiver Support

Immediately after a death

Upon a loved one’s last breath, you may find yourself a little disoriented. Respect that otherworldliness. Families often just sit in silence for a while. Or share chuckles and sweet memories, tears and hugs. There is no need to rush to call the funeral director. A body can safely remain at home—or in a facility’s bed—for several hours.

Two things to do immediately

  • Write down the time of death. This is essential for a death certificate.
  • If your loved one is an organ donor, follow the instructions of the institution involved. Time is of the essence.

Within the first 30 minutes

  • Close the eyes and straighten the limbs. (Before the joints start to stiffen.) Place a rolled towel under the jaw to keep the mouth closed.
  • Call hospice if your loved one is enrolled in this service. 
  • Call 911 unless you are already in a facility or working with hospice.

Before you call the funeral home. Contact those who might want to pay last respects. You may want to wash or dress the body. If there are after-death faith traditions, contact clergy to come perform those rituals.

Call the funeral home only when you are ready for the body to be taken. They will come fairly quickly and things will move very fast. This call is the first step into your new life without your relative. Say your final goodbyes before they come. You may or may not want to witness the body’s removal in a body bag.

Once the body is gone

  • Divide up the phone calls. Split the list so you call only those friends and relatives who were closest. Others can contact more-distant relations.
  • Provide for dependents. If your loved one tended to someone else, make interim arrangements until a long-term plan for their care is mobilized. This goes for pets, too.

Is the death of a loved one in your near future?
You don’t have to go through this alone. 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 your loved one stay comfortable through the end, and help you prepare. Let’s start the conversation.

What is a “CCRC?”

A CCRC, or continuing care retirement community, answers the desire to “move just once.” Rather than relocate several times over the course of aging, your loved one can stay on one campus. Even as care needs change.

Typically, residents start by moving in to an independent living unit with no support services. When help is needed, they can step up to an assisted living unit. There they are relieved of cooking, cleaning, and more. A memory care unit serves those with dementia. A skilled nursing unit houses those who need 24/7 access to medical attention or rehabilitation.

These communities are typically rich in amenities and resident activities. They are particularly appealing to couples. Mates can live close to each other and visit easily. Convenient when one is totally independent and the other needs care.

Biggest drawback? Expense
CCRCs require a hefty entrance fee—usually in the six figures. And there are monthly fees as well, often quite high. Medicare covers expenses only in very limited circumstances and for a very limited time.

Given the steep entrance fee, it’s important to verify the financial stability of the company running the CCRC. If it goes bankrupt, all that money may be lost.

It’s also wise to have an attorney and a tax advisor review the CCRC contract. Some of the fees may be tax deductible. Take special note of refund options should your loved one want to leave. And find out what happens to the entrance fee upon your relative’s passing. Also, if there are monthly fee obligations until a new resident is found for the unit.

Give it a test
Have your loved one spend at least a few nights on campus before making a commitment. Be sure it’s a good fit. A CCRC is a long-term investment.

Is a CCRC on the table?
Although the simplicity and amenities may be appealing, this is the highest cost option and brings with it significant financial risk. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice caution you to bring in legal and tax experts before making a final decision. Considering the options? Give us a call at 1-800-897-3052, toll-free.

Adding meaning to your life

Each new year’s dawning seems like a nudge to check one’s personal compass. Are you headed in the direction you want to be going? Has life seemed just a frenzied dash through the to-do list? Or maybe your past year was dominated by feelings of frustration or futility.

Perhaps you yearn for a sense of meaning. You are not alone. It turns out that a feeling of purposefulness is important to well-being and the ability to thrive.

Many people think that a life with purpose requires holding and achieving lofty goals. Not so! We don’t have to aspire to know “the meaning of life.” We simply need to know the meaning in our life, very specifically.

New research shows that consciously tying your daily activities to your personal values results in living with a greater sense of meaning or purpose.

So, ask yourself: What do I value? How is that reflected in my daily activities?

Maybe your caregiving tasks this week include taking dad to the doctor. Perhaps arranging for in-home care and arguing with the insurance company about reimbursements. Or even cleaning up after a bathroom mishap. Hardly the stuff of transcendence!

But flip that around. Why do you do these things? The values behind these mundane, or even frustrating, tasks might be

  • wanting to give back for care received in your childhood
  • that families stick together and look out for each other
  • a sense of fairness, sharing the load so one sibling is not shouldering it all

Now consciously link your activities to your values and use this technique to support your well-being. In the midst of an unpleasant caregiving task, remind yourself of its resonance with your personal values. Holding that thought may help you get through a challenging episode and live with a greater sense of fulfillment.

Are you feeling bogged down as a family caregiver?
We can help. At Iowa City Hospice, we walk this road with families every day. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we can help you carry the load. Give us a call at 1-800-897-3052, toll-free.

What is a speech therapist?

For many of us, the words “speech therapy” make us think of a classmate in grade school who had trouble because of stuttering. In fact, speech therapists help with many problems that crop up later in life. Consider stroke, Parkinson’s, dementia, and brain injury. All these disorders can affect a person’s ability to find and form words, put together language, vocalize, and even swallow.

Speech therapists work with speech-, brain-, and throat-related problems. (They are also known as “speech pathologists.”) Like occupational therapists and physical therapists, speech therapists are specially trained members of the health care team. Medicare pays for their services if a doctor makes a referral.

What does a speech therapist do?
The first step is evaluation. Depending on your loved one’s difficulties, the speech therapist will assess your loved one’s ability to

  • form words and make sounds
  • understand spoken words
  • find words and organize thoughts into speech
  • regain skills for reading and writing
  • control volume or pitch of the voice
  • swallow without choking

The speech therapist will then develop a treatment plan. This might involve recommendations to consult your doctor about medication or surgery. Or exercises your loved one can do at home. The exercises may work to improve muscle control of the tongue and throat. Or may rebuild nerve pathways to the brain. Or help your relative learn to pay attention to voice volume or facial expression.

As with many therapies, it is up to the patient to practice at home. This is where you come in, providing support and removing barriers without appearing to nag.

Speech therapists work in various settings. For instance, hospitals, rehabilitation facilities, and independent offices. In some circumstances, if your loved one meets Medicare’s “homebound” criteria, the therapist can come to the home.

If you think your loved one might benefit from speech therapy, ask the doctor for a referral.

Is communication difficult?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we understand how vital it is to be able to communicate fluidly with your loved one. Anything that makes that process easier is going to make your relationship more fulfilling and your support more effective. Give us a call at 1-800-897-3052, toll-free. We at Iowa City Hospice can help you through this difficult and sometimes frustrating process.

Dad lost weight!

A holiday visit sometimes reveals surprising changes, such as little food in the cupboard, a loved one’s loss of appetite, or his or her unexpected weight loss.

Talk with the doctor first. A weight loss of 5% over 6–12 months is considered worthy of medical attention. (For a 130-pound woman, that would be seven pounds. For a 200-pound man, that would be 10 pounds.) About 75% of the time there is a medical reason, so have the doctor check it out.

But then there’s the 25% of the time when it’s not a medical problem.

Eating is a multifaceted activity. It certainly satisfies feelings of hunger. But it is also a taste sensation, a cultural activity, a reminder of our tie to times past, and sometimes a social activity. It also requires the ability to shop and to cook.

Check out these possible reasons for unexplained weight loss, and their remedies.

Access to food

  • Money. Many elders needlessly limit purchases. A review of the budget, or shopping together, may help. If finances are limited, consider senior dining programs and food banks.
  • Shopping. Your parent may have difficulty getting to a grocery store. Arrange for rides to get there. Or consider a taxi or ride-sharing service. If he or she is homebound, consider meal delivery services, such as Meals on Wheels.
  • Cooking. Cooking is physically demanding. Standing. Lifting. Carrying. Help prepare meals in advance. Or identify shortcuts, such as precut vegetables.

Appetite and eating

  • Flavor. We lose the sense of taste and smell as we age. And salt-restricted diets are often bland. Suggest cooking with more herbs and spices. 
  • Pain. Pain decreases appetite. Also check with the dentist for problems with dentures or teeth.
  • Depression. Feelings of sadness, hopelessness, or loneliness commonly reduce appetite. So can eating alone from the loss of a partner through death or divorce. Have your loved one evaluated for depression. Look for ways to reduce isolation, particularly at mealtime.
  • Medication. Some medications cause nausea or constipation. Others bring on a depressed mood. Still others reduce the ability to taste and smell. Ask the pharmacist about side effects and possible alternative drugs.

Memory loss can result in forgetting how to cook, not recognizing hunger pains, or not cooking out of fear of leaving the stove on. Consider having microwavable meals prepared and delivered.

Overuse of alcohol leads to loss of appetite and malnutrition. But a bit of alcohol with a meal can stimulate appetite. Strive for balance.

Have you noticed a sudden loss of weight?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice understand how scary this can seem. But we can also help with solutions for those nonmedical causes. Give us a call at 1-800-897-3052, toll-free.

Overcoming sadness

Whether you are caring for a loved one with dementia or helping a relative with cancer, sometimes the sadness of it all feels overwhelming. Especially at the holidays. The sadness is natural, of course. But you don’t want to get paralyzed by it.

Pivoting from the sadness
As family caregivers, we need to learn how to acknowledge the sadness. But we also need to allow for joy at the same time so we have the energy to continue providing care. It’s not self-centered to be happy. In fact, researchers have found that the “happier” we are, the more we tend to give to others.

The type of happiness that nurtures our giving nature is not the thrill of winning the lottery. Quite the opposite. It’s the little smiles and chuckles of every day that create an internal reservoir of contentment. It’s the frequency—not intensity—of positives in our lives that fills our personal well.

Cultivating contentment

  • Be selective with your attention. What we focus on—or don’t focus on—has a huge impact on our mood. Ignore the things that make you feel hopeless and focus on what can be done. 
  • Give yourself two or three pleasure moments a day. What feeds your soul? A walk in the park? Listening to music? A relaxing bath? It doesn’t have to be a whoop-de-do.
  • Connect with a confidant. Research shows that a visit or talk with a close friend absolutely boosts mood and confidence. It also strengthens your immune system and improves your thinking!
  • Ease up on your expectations. Your relative may simply be in his or her natural decline. Provide the softest landing possible. Find out what they would like to do in the time that remains. Keep them as comfortable as you can and create moments of joy whenever possible.

Is the sadness of it all grinding away at your spirit?
That’s a sure sign you need help. You don’t have to do this alone. 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 replenish your well and find the strength to carry on.

Visiting in the digital age

Today, there are many ways to stay in touch with the elders we love. That’s a good thing because research suggests that older adults who are socially engaged enjoy greater happiness and a sense of purpose. Those who are isolated and lonely are at a higher risk of depression, heart disease, obesity, and Alzheimer’s.

But not all the options for connecting are equal.

Face-to-face exchanges are the best. Meeting in person engages many of our senses—vision, hearing, touch, and smell. Plus, being in the same space together and sharing an occasion deepens our sense of connection.

Other media don’t match up. Phones, email, texting, social media … each has its advantages. But older adults who rely on these media have the same rates of depression as those who don’t connect with others.

Video chatting is the exception! In a study of 1,400 older adults, those using apps such as Skype and FaceTime were half as likely to be depressed as those using other media. The visual feedback and “real time” interactions seem to offer many of the benefits of a face-to-face visit. For example, “When I video chat, I get to see my grandchild,” or “On email, no one gets my jokes.”

More ways to video chat. A focus group of seniors analyzed Amazon Echo Show, the latest video-chatting option of the Alexa digital assistant. It received extremely favorable reviews. They loved the simplicity of saying “Call John.” 

The downsides. Getting your relative set up may present the biggest obstacle. Your loved one may need help downloading an app and learning to operate a mobile device. Or he or she may need help uploading contacts. Or balk about privacy and the security of data.

There’s nothing to equal the value of a face-to-face visit. But if you can’t visit often, consider frequent video chatting as your next-best alternative. 

Do you live far away?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice understand how hard it is to stay connected. We can help you with our team approach to care. Together, we can work to reduce loneliness and support meaningful interactions. Give us a call at 1-800-897-3052, toll-free.

Coping with the Holiday Blues

Caring for a seriously ill family member can lend a tinge of blue to the holidays.

It may be sadness that cherished family rituals are no longer possible.

Or you may be worried that this year will be the last for a sick or ailing loved one.

Perhaps the thought of visiting relatives is simply exhausting.

Here are some ways to handle these common stressors.

It doesn’t have to be “all or nothing.” Even if some family customs are no longer realistic, embrace what’s still possible. And let go of the guilt-laden “shoulds.”

  • Keep it simple. Perhaps you still gather at Mom and Dad’s, but order a precooked, take-out meal. Or have everyone contribute to the meal. Try to capture the essence in a way that no one person shoulders a big burden.
  • Focus on the most meaningful activities. Your energy and your loved one’s energy are limited! Pick one ritual that truly gives you that holiday lift and consider any others an “extra gift” of the season.

Acknowledge the “anticipatory grief.” You’re not crazy if pulling out your holiday sweater brings on a bout of tears.

  • A holiday can sharpen awareness of life’s impermanence. You may feel grief about the losses you have already experienced. And grief as you realize your loved one may not be with you next year. These feelings are normal. If possible, share them with someone who understands.
  • Celebrate your loved one’s presence. Trying to “make this holiday the best” may distract you from spending quality time with your relative. Instead, take the opportunity to cherish what you have now, and revel together in shared memories of holidays past.

Maintain your normal self-care routines. In this season of extra stress, it’s especially important to get enough sleep, eat sensibly, and exercise regularly.

Do the holidays feel overwhelming?
You are not alone. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we get calls from many families during this season. Give us a call at 1-800-897-3052, toll-free. We at Iowa City Hospice can help lighten your load and add some lightness to your spirit as well.

Diet and Parkinson’s

Dietary habits make a big difference in quality of life for people with Parkinson’s. Eating-related symptoms often crop up. For example, difficulties with swallowing. Also, problems with constipation as a result of slow muscle response. And problematic food–drug interactions. On the plus side, some foods can reduce the free radicals common in Parkinson’s.

Here are some tips to discuss with your loved one.

  • Constipation. In the morning, a glass of warm fluids such as hot water, tea, or warmed prune juice helps kick-start the bowels. A high-fiber diet and 6–8 ounces of fluid per day is a natural remedy. High-fiber foods include vegetables, legumes, and whole grains. Also fruits with the peel left on. There are prescription medicines that can help. And certainly, exercise helps all aspects of Parkinson’s.
  • Swallowing problems. Coughing or choking can be relieved by sitting upright at a 90° angle while eating and “tucking the chin” down toward the neck when swallowing. Also try drinking from a wide-rim glass or cup. Taking smaller bites and chewing thoroughly can help. (Plan for longer meal times. Also, smaller, more-frequent meals.) Talk with a speech therapist or dietitian about other solutions.
  • Medication-related issues. A key Parkinson’s drug, carbidopa/levodopa, works best when taken in the absence of protein-rich foods. Ideally, about an hour before or two hours after meals. This timing can be challenging. Other Parkinson’s drugs may conflict with certain foods and minerals or cause dehydration. Consult with your loved one’s doctor and ask for a session with a dietitian or nurse to create a workable plan.
  • Antioxidants. Your relative with Parkinson’s has more free radicals than their same-age peers do. Antioxidant foods help mop up these toxic elements. The best foods are deeply colored fruits and vegetables. Blueberries, strawberries, raspberries, and red or purple grapes. Red cabbage, spinach, kale, and sweet potatoes.

Are you caring for a person with Parkinson’s?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice understand how this condition affects all facets of daily life. Let us help you through the process. Give us a call at 1-800-897-3052, toll-free.

Too much gratitude?

The benefits of gratitude are well understood. Studies show, for example, that approaching life from a grateful stance yields a stronger immune system, lower blood pressure, and better sleep. Plus, people who report more gratitude also report greater feelings of joy, aliveness, and optimism. Those who tend toward gratitude experience less loneliness and isolation and greater compassion.

So why hold back on giving thanks?

At its heart, gratitude helps us maintain perspective. We see the larger picture. We avoid getting fixated on small annoyances. Saying “thank you” reinforces our sense of interconnectedness. It helps us recognize that we are not alone with our problems.

But forced or misplaced gratitude can undermine our overall well-being. For instance:

  • Stretching to feel grateful about a person who is taking advantage. Dysfunctional relationships abound in family caregiving. There’s crankiness in the person you care for. Or siblings who don’t share the load. Don’t force yourself to “find some gratitude” when your true feelings are otherwise. In some situations, it is important to set limits and say “no.” Listen to your gut. Are you just making excuses for another’s disrespect? Gratitude can help you get by in the short term. And may be appropriate even for small things. But don’t let it mask a larger problem that needs addressing.
  • Mistaking gratitude for indebtedness. We all keep something of a scorecard to assess the give and take in relationships. The closer to center one is in the rings of intimacy, the less appropriate “keeping score” may be. (Think of a business relationship vs. a spousal relationship.) Within families, if someone does you a good turn, it’s appropriate to show genuine appreciation. It is equally appropriate to acknowledge to yourself that you are deserving of help. Dashing to “repay” them—or their behaving as if you should—can inadvertently devalue your contributions.

In this season of gratitude, we wish you many genuine moments of appreciation. And if you find that some exchanges seem out of balance, it may be time to get some help. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice are positioned to lighten your load and help you restore balance. Give us a call at 1-800-897-3052, toll-free.