Family Caregiver Support

Depression after a scary diagnosis

Depression after a scary diagnosisIf the person you care for has a life-threatening illness, you might think it’s only natural for them to feel down. Even hopeless from time to time.

But weeks of sadness are not a side effect one simply has to tolerate. It is not uncommon for someone with cancer or a similarly scary diagnosis to become depressed. But depression can and should be treated. Effective treatment makes for better quality of life. It can also improve other symptoms, such as pain and insomnia.

Easing physical distress. The first step is to address difficult physical symptoms. Ask for a referral for palliative care. These specialists aim to resolve pain, nausea, fatigue, and other distressing symptoms, even when they are the side effects of treatment. Hospice also specializes in comfort care. Ask the doctor if a hospice referral is appropriate.

Addressing emotional issues. Your loved one may feel despair about unresolved relationships. Or may be grappling with concerns about dignity or feeling like a burden to others. Medications and short-term psychotherapy can help a lot. Also support groups with other patients. Palliative care and hospice specialists know this terrain. They are well versed in the emotional issues that arise with a life-threatening illness.

Finding meaning or purpose. Facing a potentially terminal illness can raise questions about the meaning of one’s life. Some people find relief in life review with a trained counselor. Others find meditation brings calm and a new perspective. Talking with a member of the clergy or other spiritual advisor may bring solace. Hospice programs have chaplains on staff. They can help your relative find meaning and purpose without pushing a particular religious agenda.

Is depression part of the picture?
Too often, we at Iowa City Hospice see people assume that depression is a given for their loved one (and themselves as well!). As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we urge you to ask for help. Depression makes a hard time miserable. It doesn’t have to be that way. Let’s talk: 1-800-897-3052, toll-free.

Too many pills: When less is more

Too many pills: When less is more

More than half of older adults take five or more medications per day. That’s “polypharmacy,” and can be dangerous. Taking too many medicines can cause problems such as dizziness, mental confusion, and heart failure. It can create an increased risk of falls, which often lead to the end of independent living. An estimated 10% to 30% of older adult hospitalizations are due to medication problems.

It’s easy for medicines to pile up. A specialist may not know what other doctors are prescribing. Doctors hesitate to eliminate a drug another physician has ordered. Your relative may be on medications that made sense following a hospital discharge but are no longer needed.

Any time there is a significant health event or behavior change, consider a medication review.

October 23 is National Prescription Drug Take Back Day. Use this as a reminder to ask for a review of medicines, supplements, and over-the-counter drugs with the doctor or a pharmacist.

  • Questions to ask. What is each drug for? Can any be eliminated? Are the side effects worse than the conditions they treat? Are they safe to take with the other drugs?
  • Explore other options. Is a lower dose possible, for fewer side effects? Would a generic be just as effective, yet less expensive? (Good for the pocketbook!) Could lifestyle changes, such as diet or exercise, reduce the need for a drug?
  • Eliminate only one medicine at a time. This way you will know if stopping a particular prescription creates a problem. Don’t do this on your own! A doctor’s supervision is needed to determine which drugs are okay to “de-prescribe.”

If you have drugs to dispose of, do it safely. Look for your local safe disposal sites at (Flushing drugs down the toilet pollutes the water table. Throwing them in the trash may lead to children, pets, and others getting to them in ways that could be dangerous.)

Do you suspect that your loved one is taking too many pills?
It’s a common problem. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice have seen how much better an older adult can feel when they methodically review their medicines with the doctor and prune back what’s not needed. Want to learn more? Give us a call at 1-800-897-3052, toll-free.

Managing emotional outbursts

Managing emotional outbursts

If the person you care for has Alzheimer’s disease or another type of dementia, you may find their sudden emotional swings more difficult than their forgetfulness. Among many things, the disease has taken away their inhibitions. They can become quite irrational. And they are more likely to make a scene in public than they ever would have before their dementia. Family members mention embarrassment as one of the most difficult aspects of caring for their relative.

Although you can’t completely prevent outbursts, you can reduce their frequency and their intensity.

When a mood swing or difficult behavior occurs, ask yourself, “why now?”

  • Look for a trigger. Your loved one may be responding to someone’s comment or behavior or to something in the room, such as too much noise or light or too many people. Remove them from the situation and note patterns. Strive to avoid those triggers that prompt an outburst.
  • Look for a medical problem. Pain, a bladder infection, a hearing or vision problem, or a reaction to a medication may underlie the behavior change. Get a doctor’s input.

When responding, refrain from correcting, reasoning, or bringing them into “reality.” Acknowledge your loved one’s feelings. Irrational as they may be, they are very real to your relative.

  • Connect and then distract. Your relative’s behavior is likely to persist until they heard and understood by you. “I can see you’re frustrated. I would be too. Let’s have a bite to eat first, and then we can deal with this.”
  • If there’s sadness or fear. Reassure. Use touch and words of comfort and support. Demonstrate that you “get it.” For example, “You’re looking lonely. May I sit awhile with you?”
  • If there’s anger. Stay calm. Don’t challenge or disagree. If you are in the middle of doing something together and you find yourself feeling angry in response, perhaps it’s time to take a break. You can excuse yourself to go to the bathroom. Come back in 15 minutes. At that time you can reevaluate if it seems wiser to resume your activity or do something else.

Emotional outbursts got you down?
Let us help. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice see countless caregivers become homebound themselves because they couldn’t bear the embarrassment of an emotional outburst in public. It doesn’t have to be that way. Give us a call: 1-800-897-3052, toll-free.

The “dignity of risk”

As a family caregiver, you need to balance your desire to protect your loved one with the respect that acknowledges they have the right to make personal choices. Even bad ones.

One of the most challenging dilemmas when caring for an aging parent is balancing their preference for independence with your concern for their safety.

If you have noticed lapses in cleanliness, meals, bill payment, or other areas, you may be worried that your loved one is not able to safely live alone. They may refuse assistance, however, not recognizing there is a problem.

Research suggests that as many as 1 in 10 elders make health care and lifestyle choices that put their safety and well-being at risk. Scary as that may sound, they are adults and need to be afforded the “dignity of risk.” The following may help:

  • Accept some risk. Get a professional evaluation of your loved one’s ability to make decisions clearly. Even if your relative has mild memory loss or early dementia, they are still legally entitled to make personal decisions. We all have the right to make “bad” choices.
  • Clarify your loved one’s long-term priorities. Become an ally. Discuss what’s most important, then work toward that goal together. “Mom, I too want you to be able to live out your days right here, just as you say. Let’s see what we can come up with together to make sure that happens.”
  • Act on what’s acceptable. Adopt an attitude of curiosity and a willingness to pursue change slowly. If dad won’t give up driving, will he accept rides at night? Look for options that add to safety while you support your relative’s long-term goals.
  • Get direction for the future. Talk with your parent now about worst-case scenarios on a “what if” basis. Emphasize that you want things to unfold to your parent’s liking as much as possible. Be sure they understand that your intent is to understand the values behind their decisions so you can make choices that fit with their goals.

Are you worried about a loved one’s decisions?

You are not alone. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice see families struggle with this regularly. Let us help you clarify when the dignity of risk applies and when you really do need to step in. Give us a call at 1-800-897-3052, toll-free.

Not all socks are created equal

Not all socks are created equal

What do a marathon runner and your aging parent have in common? Both could benefit from compression socks! By applying pressure to the legs, compression socks help the valves in the veins do their work—so blood is pushed back to the heart and doesn’t pool in the legs. The socks also help keep lymph fluid moving. Older adults with edema (swollen legs), varicose veins, or deep vein thrombosis find that compression socks ease discomfort and can even prevent problems. This is especially true if your relative spends a lot of time sitting.

Compression socks are safe for the vast majority of older adults and are an underutilized option. Consider them for your loved one before a long plane flight or car trip. You can even find fun ones online if you include “fashionable” or “crazy” in your search.

If you wonder about your relative using them regularly, consult with the doctor first. You want to know the right compression and size. Also, these socks are not recommended for those with diabetes and persons with certain heart or vein conditions. For long-term use, ask the doctor for a prescription. This will allow for graduated compression socks to be professionally fitted to your loved one’s calf and ankle dimensions.

Tips for compression socks

  • Follow the fitter’s directions. Ask for tips on getting the socks on and off.
  • Have your family member wear them an hour or two each day to start. Increase time gradually.
  • Get a refit if your loved one gains or loses 10 lbs.
  • Hand wash and hang to dry.
  • Replace the socks when they lose their stretch.
  • Check your relative’s skin for dryness, chafing, irritation, redness, or dents.
  • Ensure your family member wears a clean pair each day so socks don’t stick to the skin and become difficult to remove.

Does your loved one struggle with edema?
It’s nice to know there are nondrug ways to ease your relative’s discomfort. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice always like sharing nonpharmaceutical approaches to common eldercare problems. If this philosophy appeals, give us a call at 1-800-897-3052, toll-free.

Dealing with anxiety

Dealing with anxietyIt’s only natural for family caregivers to worry. Understandably, we spend a lot of time thinking about “what’s next.”

But if you are in a pattern of persistent worry and are starting to feel the stress in your body too—perhaps headaches, loss of appetite, or trouble sleeping—you may be dealing with anxiety. You are not alone. An estimated 40 million Americans report problems with anxiety each year.

Does this sound familiar?

  • Focusing on worst-case scenarios. Not seeing the things that are working well.
  • Playing a worry over and over in your mind. This may distract you during the day and interfere with sleep at night.
  • Thinking in black-and-white terms only. Your self-talk often includes “always” or “never.”
  • Getting stuck on details. Forgetting to look at the big picture.

Try these challenges to negative thinking to help you arrive at a more balanced view:

  • What are you saying to yourself? Write it down. Is this extreme or worst-case-scenario thinking?
  • What do you know to be true? What is fact? What is just a thought or feeling?
  • What is the worst that could happen? Is it a probability or just a possibility?
  • What skills, resources, or qualities do you already possess? Give yourself realistic credit.
  • What can you do now to make life easier (learn new skills, ask others for help)?

If anxiety is getting in the way of your sleep or peace of mind, talk with your doctor. And certainly, if you experience chest pains, a racing heart, and/or episodes of fast breathing, get checked out. Talking with a therapist can quickly get you back on a confident and even keel. And consider getting help with your caregiving.

Do you find yourself with anxious thoughts?
Perhaps it’s time to get some caregiving help. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice find that families often underestimate how much work it is to care for an aging loved one. They end up paying for it in terms of distress, poor health, and trouble sleeping. Not a very good quality of life. You don’t have to do this alone. Give us a call: 1-800-897-3052, toll-free.

Services at home: Medicare

Services at home: MedicareMedicare is health insurance provided by the federal government. It covers adults 65 and older, as well as persons with disabilities. In terms of home care, Medicare pays for visits only by medically trained staff. In that light, there are two programs:

Home health care involves periodic home visits for a month or two. The focus is to bring the patient back to their previous level of health and ability. It is often initiated after a surgery or a multiday hospital stay. To be eligible, your loved one must have great difficulty leaving the house. Depending on your relative’s needs, services may include the following:

  • A nurse to oversee progress
  • A physical therapist to assist with rehab
  • An occupational therapist to suggest strategies for living with new disabilities
  • A speech therapist to address difficulties with speaking and/or swallowing
  • A social worker to suggest community assistance programs

Hospice care is for people with an incurable illness. It involves weekly home visits over a period of six months. Sometimes more.

  • A nurse to manage pain and difficult symptoms
  • An aide to assist with bathing
  • A social worker for emotional and other support
  • A chaplain for talking through spiritual concerns
  • A volunteer to periodically visit with your loved one, offering family members a few hours off

A hospice patient is not expected to regain their health. Hospice care supports the patient and the family. The goal is to allow the patient to live at home without pain or discomfort in the weeks or months that remain.

Both home health and hospice require a doctor’s order. If you think either one would be of benefit, ask the doctor for a referral. Most families wish they had received help earlier. Better to ask sooner than later.

Looking for home-based support?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice have seen firsthand how wonderful it is to have medical professionals come to the home when a loved one is too ill or frail to leave. If you are looking for help at home, give us a call at 1-800-897-3052, toll-free. We can help you find the help you need.

Coping with another person’s pain

Coping with another person's pain When your family member is in pain, you are suffering, too. The “mirror neurons” in our brains are programmed to recognize pain in others. That’s good news in that it arouses compassion and spurs us to action. But it can be bad news, too. When you are highly attuned to a loved one’s pain, you are at higher risk of depression, burnout, and poor health yourself.

Be aware of your distress as separate from your loved one’s
Those mirror neurons can hijack your emotions. Take a moment to separate your experience from that of your relative:

  • What are you feeling? Naming the feelings can help you observe them and diminish their power.
  • What is triggering you? Are you remembering a similar episode of your own pain? Do you feel like a bad daughter/son/spouse because you can’t make the pain go away?
  • Are your thoughts accurate or constructive? Do what you can to maintain a balanced perspective. Your past pain may or may not be like the pain your relative is feeling. You aren’t responsible for your loved one’s pain. All you can do is your best with the tools at your disposal.
  • What do you need to do to come to a calm, centered place? Perhaps it’s some deep breathing. Maybe a walk around the block. Eating something healthy. You are not going to be as effective in alleviating your loved one’s pain if you are distracted by your own distress.
  • What can you realistically do to help your relative?

Learn about pain management. Your ability to reduce your relative’s experience of pain will help both of you.

  • Report symptoms. Check out the Pain Log hosted by the American Chronic Pain Association, or find the free mobile app at the Apple Store and Google Play.
  • Explore nonmedicinal approaches to pain management. Ask about the steps your loved one can take to lessen pain when it occurs and how you can be supportive.
  • Learn about medications. Be cautious about potential addiction while at the same time understand that in cases of life-threatening illness, the hazards of narcotics are very different than when pain is caused by chronic conditions.
  • Ask the doctor for a palliative care consultation. If your loved one’s pain is related to a life-threatening illness, these specialists can assist with pain control.

Accept what is beyond your power and focus on what you can control.
Some diseases just do cause pain that may not be fully conquered. That said, you can help in other ways and make it a point to keep your own ship afloat so you can continue to provide care over the long haul.

  • Emphasize comfort and well-being. Remind yourself, “Today, I may not be able to stop the pain, but I can still [prepare food, massage feet, etc.].”
  • Provide distractions. If your family member is engaged in an activity, he or she is less likely to be aware of the pain.
  • Take a time out. Be stress free for a while. Do something fun. Guilt is not productive, and being in emotional or physical pain yourself is not going to make your loved one feel any better. When you as the caregiver are refreshed, however, everyone benefits.
  • Complete a project. Counteract your feelings of powerlessness by accomplishing something. Think small and simple. Clean out a drawer or bake a loaf of bread.
  • Tap into your spiritual/religious beliefs. Make time for prayer or meditation. Listen to a podcast. Sing hymns. Read an inspirational book. Talk with the clergy of your faith community. 

Are you sometimes overwhelmed by a loved one’s pain?
At Iowa City Hospice, we have seen the most empathetic and loving family members get ground down by the pain of a relative’s serious illness. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, let us help. Give us a call at 1-800-897-3052, toll-free. You don’t have to do this alone.

What is a daily money manager?

What is a daily money manager?A financial advisor manages investments. A daily money manager (DMM) is someone who comes to the home once or twice a month to handle the mundane aspects of personal finances: Paying monthly bills (but your loved one signs the checks). Balancing the checkbook. Navigating health insurance claims. Resolving billing errors. Tracking donations. Organizing paperwork. Gathering documents for tax time. Their job is to catch unnecessary expenses while making sure important payments are made on time.

When to call in a DMM. If you are seeing piles of unopened envelopes or shut-off notices, that’s a sure sign extra help is needed. Many families bring in a DMM when the spouse who typically handled the finances dies, as the remaining spouse may find getting up to speed just too overwhelming. Or consider a DMM if your loved one needs help but no one in the family lives close by or has the necessary time or temperament. Conversely, there may be a person who seems a little too interested. The oversight of a DMM can deter a relative or “friend” from taking financial advantage.

Benefits. A DMM can help your loved one continue to live independently and still feel in control. They check for duplicate billings and missed payments. (You don’t want the insurance cancelled!) They can identify cost-cutting measures. For example, trim the cable plan or negotiate a phone plan that better fits actual usage. A DMM can catch unexplained charges on a credit card. Plus, they get to know your relative and can alert you if they notice problems, such as drowsiness or slurred speech. Perhaps bruising from a fall.

To find a DMM. Go to the American Association of Daily Money Managers. Ask about training, background checks, and professional insurance. And certainly, check on references.

Is paperwork getting neglected?
If you notice your loved one struggling with routine finances, it may be there are more serious issues at play. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice can help you explore the root of the problem while also directing you to support services to keep the finances in order. Give us a call at 1-800-897-3052, toll-free.

The decision to stop dialysis

The decision to stop dialysis

Dialysis is life sustaining yet also quite taxing for the patient. About 25% of people who choose dialysis later decide to stop. Typically, this is because the burdens of this kidney disease treatment have severely reduced their quality of life. The tradeoff becomes no longer acceptable.

Ending dialysis is essentially a decision to let nature take its course. It means that death will follow in the near future. Patients make this choice to regain control of their life, even if only for a short while. This doesn’t end their being under a doctor’s care, but regular treatments and lab tests are no longer required. They can stop many medications, remove the access port, and eat a more enjoyable diet. Generally, they then have weeks of time to spend with family and friends—before growing weaker and sleepier, until they die.

Dying from kidney disease is typically peaceful and pain free. The discomforts can be managed. Most people choose hospice care. This includes weekly visits from a nurse and visits by a home health aide to assist with bathing. Social worker and chaplain services are also available.

If your loved one wants to stop dialysis, have them talk first with their health care provider. The dialysis team will want to know the reason. They may be able to adjust the treatment to ease difficulties.

If your relative remains resolved to quit, death is certain. They must have all affairs in order before stopping dialysis. This includes financial paperwork such as a will or trust, and a durable power of attorney. Also, a completed advance directive that names a health care decision maker and outlines treatments they do or don’t want when the end is near.

Rather than focus on shortened life, as a family take this time to express your love for each other. Enjoy the time you have left to make pleasant memories.

Is dialysis getting to be too much?
Hard as it is to ponder, for many there comes a time when the treatment is just too burdensome. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice can walk beside you through this process. Give us a call at 1-800-897-3052, toll-free.

Iowa City Hospice