Family Caregiver Support

Gifts for those with memory loss

Gifts for those with memory lossDeciding what holiday gifts to give a person with memory loss can be challenging. Following are some tips to share with family members.

The gift of time

  • A special date to share cookies and send holiday cards to others
  • Attending seasonal music events
  • Caroling together

A person with early-stage memory loss is often still striving to do his or her usual activities. Gifts that provide reminder systems or simplify daily tasks are useful.

  • A clipboard with attached pen for notes. Attractive stick-on labels for cabinets and drawers. An erasable whiteboard for listing the day’s activities.
  • A push-button wristwatch that will literally “tell the time” out loud.
  • A cell phone or personal alert system with a single button to request support from anywhere in an emergency.
  • An automated pill dispenser.

A person with mid- or late-stage dementia thrives with simplicity. Even when words are failing, sensory pleasures can still be enjoyed.

  • Music is almost always a hit, especially from the era of your loved one’s youth.
  • Easy-on and -off clothes in soft fabrics, such as sweats. Shoes with Velcro straps.
  • Cozy items for staying warm. A soft throw blanket, a fleece vest, or soft scarf. Even a furry stuffed animal as something to cuddle.
  • Scented skin lotions for arms and hands.
  • A robo pet. These lifelike pets can purr (or bark), tilt their heads, lift a paw, open and close their eyes, and respond to voice and touch. They have proven to be remarkably soothing for people in the later stages of dementia.

Are you caring for someone with memory loss?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice can help. It’s a big job and a very stressful one. You don’t have to do it alone. Give us a call at 1-800-897-3052, toll-free.

Honoring family caregivers

Honoring family caregiversNovember is National Family Caregivers Month. We want to express our gratitude to you, who are part of the 40 million people (one in six Americans) who care for an older adult friend or relative. So many family caregivers feel invisible, we thought we’d give you some perspective on the scope of family caregiving across the country. For starters, only 4% of our nation’s seniors live in nursing homes. Another 4% live in assisted living, plus 5% in retirement communities. Most (46%) live in their own home or in the home of a family member (37%) or someone else (4%). They are assisted by an unpaid network of family and friends—caring people such as you—who drive them to the doctors, prepare meals, and eventually assist with dressing, bathing, and toileting.

The largest group of family caregivers provides ten hours of assistance per week. But 30% provide 20 hours a week, and another 20% provide forty hours or more. Yet many family caregivers don’t consider that they are essentially adding a part-time or even full-time job to their lives. Maybe you, too, think of it as “just what a good daughter/son, husband/wife/partner would do.”

Your contribution is not small! AARP has calculated that unpaid family caregivers provide 34 billion hours of care each year. That would be worth $470 billion if all were paid.

There are certainly rewards to caregiving. A feeling of gratification from giving back. Sometimes increased closeness with the person receiving the care. Pride in learning new skills. Greater compassion. Increased patience.

But family caregiving also has its costs. It can be demanding work. And family dynamics are often tough. Care receivers are not always grateful. Plus, there are often out-of-pocket expenses. Over $7,200 per year on average. Perhaps you’ve also felt that your health has suffered. Reduced sleep, minimal leisure time, delayed medical visits, and poor self-care are common. So are emotional consequences. More than one in three family caregivers reports high emotional strain. One in five reports feeling alone.

We salute you! As a nation, we owe an immense debt of gratitude to family caregivers. Thank you for all you do to help your aging and ill relatives. It does not go unnoticed by us! We are here to help.

Are you a family caregiver?
If you are providing assistance to an aging or disabled relative, 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 understand the challenges you face. You don’t have to do this alone!

Suppose they don’t get better …

Suppose they don't get better ...Are frequent visits to the ER a significant part of the past six to twelve months? Does your loved one seem more fatigued? Less interested in eating? Perhaps a bit withdrawn?

These symptoms may be hallmarks of a serious illness your relative will overcome. But it’s also possible that these signal that your family member no longer has the reserves to beat their condition. We all get to this point in life. Still, it can be hard to grasp when it is your loved one at this juncture.

While we each have our own journey, there are common signs that a person is entering their final chapter. The medical term is “frailty syndrome.” Here are some indications:

  • Multiple hospitalizations or trips to the ER
  • Frequent infections
  • Reduced appetite, weight loss
  • Sleeping more, especially during the day
  • Trouble with balance (falling), walking, and getting around
  • Requiring assistance with bathing, dressing, eating, or toileting
  • Withdrawing from activities and social gatherings
  • Nostalgic reflection on the past
  • Mental fuzziness or confusion

If you recognize some of these signs, it doesn’t mean your loved one is at death’s door. To gain perspective, consider asking the doctor, “Would you be surprised if [relative’s name] were to pass away in the next year?”

Difficult as it may be to hear, the doctor’s feedback offers opportunities for discussion and choices. Your loved one can consider how to live out the time remaining to them. At this stage, many people may decide there will be no more hospital visits. No more chemo. No more fighting the inevitable. However, they may still have goals they hope to achieve, relationships to mend, or simply want time to spend with family. One option for relief from taxing symptoms is hospice care. They provide symptom relief so your loved one can live fully in the time that is left.

Does your relative fit the picture of frailty?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice know how difficult it can be to acknowledge a loved one’s mortality. Hospice provides care and support for six months and even up to eighteen months or more. It’s never too early to ask. Give us a call at 1-800-897-3052, toll-free. We can help everyone consider the options and find ways to support the person you care for.

Palliative care for seriously ill veterans

Palliative care for seriously ill veterans

Is your family member seriously ill or in frail condition? A veteran? If so, the VA has a special service that offers palliative care to keep your loved one comfortable.

The cause of your loved one’s ill health is not important in requesting palliative care. The point is to relieve distressing symptoms. For example, you might be concerned about pain, nausea, or shortness of breath. Your relative can receive treatment specifically to keep such discomforts at bay.

Palliative care professionals work in a team, which allows them to treat the whole person. For instance, a social worker can address with emotional issues and a chaplain can address spiritual distress.

With palliative care:

  • Providers come to the home. Or to a residential or skilled care facility or hospital.
  • Your loved one may continue curative treatments.
  • The focus is comfort and quality of life. The team works to make each day the best day it can be.
  • Counseling support is also provided for family members, if desired.

Veterans who request palliative care can still receive treatment for curing the disease. For example, suppose your loved one has cancer. They can continue with chemo. The palliative care team would provide assistance for dealing with the pain of the cancer and the nausea from treatment. The team could also help with any emotional or spiritual issues. This support is available for the veteran and for the veteran’s family caregivers.

Palliative care is available to any veteran who is enrolled in the VA for health services. Most of the care is provided free of charge or with a very small copay.

Is the person your care for in pain or distress of any kind?
We at Iowa City Hospice understand how distressing it can be for you to see a loved one in pain or discomfort. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we can attest to the value—for everyone!—of the relief provided by palliative care. Even if your relative is not a veteran, palliative care is not restricted to the VA. Give us a call at 1-800-897-3052, toll-free to learn more.

Putting anticipation to work for you

Putting anticipation to work for you

Do you ever wish you could wave a magic wand for more joy? Patience? Optimism? Motivation? Maybe less irritability and stress? It’s actually accessible now, no wizardry required. Just a shift in attention. Welcome to “anticipation.”

You may have noticed that half the fun of a vacation is the anticipation of the journey beforehand. Research shows that anticipation gives people an emotional lift in the weeks before actual takeoff. Simply put, you can amplify the positives in your life by intentionally looking forward to them.

You don’t have to plan for a big expensive trip to get the benefits. Setting your sights on several small, near-term pleasures can deliver the same effect. It appears that the human brain can hold only so many feelings at once. Like a bucket. If you are anticipating several small pleasures—a phone call with a friend tonight, a delicious dinner tomorrow, a coming weekend off from your caregiving responsibilities—they start filling your bucket. This leaves less room for negative emotions and concerns.

Anticipating an experience delivers more happiness than looking forward to a material object. (Planning for a coffee date gives a bigger boost than planning to buy a pair of shoes.)

Plus, you can use anticipation as a motivator. Let’s say there’s a task you are not looking forward to, but you need to do it. (Drive your mom to visit her brother.) Mentally reframe it so that the drive is merely the “before” to the massage or a matinee you are planning as a treat after.

To leverage anticipation, all you need to do is make plans for something pleasant. Then give those plans prominence in your awareness. Why not try it now? Before you go to bed tonight, write down one thing you are looking forward to tomorrow.

Not enough joy in your life?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice know that time off to do things just for yourself can be hard to come by. In addition to anticipation, we know other strategies that can help you find more time for yourself and make the most of the time you have. Give us a call at 1-800-897-3052, toll-free.

What is Lewy body dementia?

What is Lewy body dementia?The most common form of dementia is Alzheimer’s disease. However, there are many other conditions that also bring on memory problems. It is important to accurately identify the cause, even if there’s no cure, because this will shape the best strategy for addressing difficult symptoms.

Lewy body dementia (LBD) is the second most common form of dementia. But it is not nearly as well known, even by doctors. It’s easy to misdiagnose because it shares symptoms with several other dementia conditions. It also varies a lot from one person to the next.

Signs of Lewy body dementia

  • Swings in ability to remember or concentrate. This may be mistaken for Alzheimer’s disease. However, the swings can be greater from day to day. Plus, short-term and long-term memory can be affected.
  • Changes in mood and/or behavior.
  • Increased sleepiness and confusion.
  • Physically acting out dreams while sleeping. This may be one of the earliest signs, occurring years before other symptoms develop.
  • Difficulty with movement, much like Parkinson’s disease.
  • Visual hallucinations. People with LBD see things that are not visible to others. Medicines usually given for hallucinations can be damaging for people with LBD. They worsen movement problems and can lead to kidney failure.

Three out of four individuals with LBD were first diagnosed with another condition. If your loved one is having odd symptoms that don’t match up to their diagnosis, ask about possible LBD. A thorough exam by a neurologist or neuropsychologist can tease out the distinctions. Two tests are available: One a skin biopsy, the other a spinal fluid test.

If your relative’s symptoms seem all over the map, you aren’t going crazy. It could be one of these lesser known conditions. You don’t want your loved one getting medications designed for something else. Ask for a second opinion if you think there might be a mismatch.

Wondering if your loved one has Lewy body dementia?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice share your concern for an accurate diagnosis. Give us a call if you think a second opinion and some medical advocacy is in order 1-800-897-3052, toll-free.

October is National Crime Prevention Month

October is National Crime Prevention Month

It’s unpleasant to imagine that your loved one might become the victim of crime, but it’s worth considering. There are valuable preventive steps to take. Unless your relative lives in a high-crime neighborhood, their greatest risk is a property crime in or around their home. In fact, older adults experience thirteen times more property crime than violent crime. Home invasions and theft are the main concerns.

Secure the perimeter.

  • Install motion detection lights and test them often. Light is an excellent deterrent to those who mean no good. Be sure the front and back doors are particularly well lit.
  • Put gravel on walkways. It’s difficult to sneak up quietly while walking on gravel.
  • Consider installing a video camera at the front door. One that allows those inside to view out before deciding to open the door.

Lock up the house. With the increasing boldness of home invasions, encourage your relative to keep windows and doors locked, even during the day.

  • Exterior doors should have deadbolts, with a peephole or video camera for viewing anyone at the door.
  • Inside, install a solid bar lock, much like they have at hotels, so your loved one has the option to open the door slightly without letting someone in. (Chain locks are too flimsy.)
  • Have them bring their phone in hand when they answer the door so they don’t have to look for it to call for help. If your relative has a personal medical alert pendant, they can use that in an emergency.
  • Train your relative to ask for ID before letting a stranger inside. Even if they say it’s an emergency, call the company to verify employment and the purpose of the visit.
  • Add plexiglass or security film on windows if your loved one lives in an area where break-ins are common.
  • Ensure curtains or blinds are closed at night and thick enough to block the view of activities indoors.
  • Have your relative keep valuables in a safe and vehicle keys out of sight. Home invaders are looking for easily available, expensive items to grab quickly.

Are you worried about crime?

With all the bad news about crime these days, it’s hard not to be concerned. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice share your worries and are happy to help you implement preventive activities to protect your loved one. Give us a call at 1-800-897-3052, toll-free.

Who is who in skilled nursing facilities?

Who is who in skilled nursing facilities?

If your loved one is discharged from the hospital to a skilled nursing facility (SNF), their care will be in the hands of a team of specialists. It’s a good idea to understand the players’ roles so you know whom to call upon for what.

  • Director of nursing. This professional oversees residents’ medical issues. Also, the nursing staff. Their job includes tracking delivery of prescriptions and monitoring each resident’s physical health. They also work with the SNF’s doctor to carry out orders for therapy.
  • Social workers. Trained to address social, emotional, and psychological issues, social workers help residents and families adjust to life in the facility. When the time comes for discharge, they also help ease the transition. If there’s something you want done differently with your loved one, you might start a conversation with the social worker.
  • Certified nursing assistants (CNAs). The CNAs are the frontline staff. From answering a call button to helping with bathing and dressing, they are often the biggest part of your relative’s daily experience.
  • Therapists. Depending on your loved one’s challenges, daily therapy may be required. A physical therapist helps improve walking, range of motion, stamina, and flexibility. A speech therapist helps residents recover language abilities. Or overcome swallowing problems. An occupational therapist uses exercises and assistive devices to regain daily life skills. They teach new strategies for self-care tasks such as feeding, dressing, and bathing.
  • Dietitian. Every resident has a food plan. This is based on their personal preferences and any medical restrictions (e.g., low fat, low salt, low sugar).
  • Activities director. This professional organizes activities for residents’ social and mental stimulation.
  • Housekeeping. Is the bed rail not releasing? Is there a spill to be cleaned? These are responsibilities of the housekeeping staff.

Is your loved one in a skilled nursing facility?
It’s easy to feel overwhelmed by all the different staff members. As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice can help you understand the system and advocate for the care you want your relative to have. Give us a call at 1-800-897-3052, toll-free.

When your loved one is depressed, suggest exercise

When your loved one is depressed, suggest exerciseDepression is common in older adults.

It’s long been known that brisk exercise can help reduce depression. But it turns out that exercise doesn’t have to be vigorous to make a difference. Even mild exercise can be effective. This is great news, especially since depression zaps energy and initiative. Researchers have found that

  • completing an exercise task yields a sense of achievement
  • achievement boosts our sense of personal power
  • increased self-confidence reduces feelings of depression and fatigue

In this case, the purpose of exercise isn’t to increase heart rate. It’s to accomplish an activity-related goal. Because when we’ve achieved something, we talk more kindly to ourselves about ourselves. As our self-talk gets more positive, that lifts our mood.

Help your relative create an activity program that suits their physical capacity. Ideally, something that can be done easily three to five times a week, eventually building up to a total of 30 minutes over the course of the day.

It doesn’t have to be strenuous: Simple stretches. Lifting light weights. An easy stroll around the block. If they are up for something more engaging—a class or walking with a buddy—all the better. They are more likely to stick with it if they have a pal. And the social contact will also help lift their depression.

Check in with the doctor first to be sure there are no foreseeable problems.

Is the person you care for depressed?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice know how hard it can be to keep your spirits up when you are caring for someone who is feeling down most of the time. You don’t have to do this alone. Give us a call at 1-800-897-3052, toll-free.

Are you prepared for a disaster?

Are you prepared for a disaster?No one likes to dwell on the possibility of disaster. But we all need to prepare for one, just in case. Help your relatives gear up for safety. Whether you live across town or across the nation, the action items are the same.

Prepare to stay in contact. In case of a disaster, how will you know your relatives are safe?

  • Because local phone service may be sketchy, choose an out-of-town contact. Also identify the address and phone number of a potential gathering place. This might be a friend’s house or a church, school, or store within walking distance. Ask family members to leave a note if they are evacuating. Have it include date, time, and plan. OR consider registering for the Red Cross Safe and Well program where family members can post messages for each other.
  • Program “in case of emergency” (ICE) information into contacts on cell phones. This helps emergency personnel know who to phone.
  • Teach family members to text message. Text messaging is often possible even when phone service is disrupted.

Assemble emergency supplies.

  • Have a “go bag” suitcase packed with clothing, a pair of comfortable shoes, personal hygiene items, and prescription medicine in case there is little time before an evacuation.
    • Regularly replace medications so they don’t expire.
    • In a waterproof container (e.g., a “zip-lock” plastic bag), keep copies of health insurance cards and an up-to-date list of prescriptions, doctors, and any special needs. Also, family identification documents (things you might otherwise keep in a file at home: Passport, marriage certificates, vaccination records …).
    • Include a list of important phone numbers (neighbors and family) in case the phone runs out of power.
    • Pack an extra phone charger.
    • Include a supply of cash.
    • Consider packing an extra set of prescription eyeglasses, readers, or contact lens (and solution). Batteries for hearing aids.
    • Include a special pillow, blanket, or other comforting item if your loved one has dementia. This can help keep them calm in a stressful situation away from home.
  • Prepare a “stay box” using a few easy-to-carry waterproof containers with at least a three-day supply of necessities in case services are down but evacuation is not necessary.
    • One gallon of water per person per day. Ideally, buy water containers and keep them sealed until needed. If you must prepare your own, use water storage safety precautions.
    • First aid kit, over-the-counter medicines (pain and fever relievers, antidiarrhea medicines, antacids, laxatives, antihistamines), extra masks in case of dust, smoke, or the eventual need to shelter indoors with large groups.
    • A whistle to call for help.
    • Flashlight and a battery-powered or hand-crank radio. Check or replace batteries once every six months. Use the time changes in fall and spring as a reminder.
    • Matches, candles, battery- or solar-powered lamp.
    • Food, can opener, mess kits, or plates and spoons. Paper towels. Rotate in new canned goods if their expiration date is near.
    • Bedding or sleeping bags.
    • Moist towelettes, toilet paper, garbage bags, and plastic ties (for personal sanitation).
    • Plastic sheeting and duct tape for makeshift shelter if needed. Or a pop-up tent. (This is handy for helping people with dementia stay calm if there is too much stimulation or chaos around them.)
    • Wrenches to shut off gas and water.
  • For those who are medically challenged
    • Have your relative wear an identifying bracelet if they have a disability or significant medical condition.
    • If your loved one has trouble getting around, keep an extra cane or walker in the car or with the stay box.
    • If your loved one has assistive devices that require power (for example, an electric wheelchair), talk to the doctor or device provider about options when the power is out. Contact the local utility company to see if the person you care for can be put on a priority power restoration list.
    • Store instructions for assistive devices in the go bag with other important documents. Note the serial number of each device in case the provider needs to be contacted.
    • Create a list of the nearest medical facilities, hospitals, and transportation options. If your relative is on dialysis, locate alternate centers that are somewhat close but far enough away that they may not be affected by a local disaster.
    • Consider enrolling in the Medicare Blue Button program so your relative can share their last three years of medical history with doctors they haven’t seen before. (This is useful in case of a need to evacuate.) There’s also a Veteran’s Blue Button program.

Get tech-ready

  • Sign up for alerts from local government or stay up to date via their social media channels.
  • Consider downloading the FEMA app (Federal Emergency Management Agency) to stay informed.
  • Get preparedness tips by texting PREPARE to 43362.
  • Find open shelters by texting SHELTER and the zip code to 43362.
  • Keep a portable phone charger in the car, and ideally a back-up energy supply.
  • Store copies of important documents (insurance policies, medical records, identification documents) in the cloud or on a password-protected “thumb drive.”
  • Sign up for direct deposit and online banking so funds can be accessed remotely in case of an evacuation.

Create a local support network

  • Give at least one trusted neighbor a key to the house or apartment.
  • Find a neighbor willing to be a “buddy” and show them where to find the emergency supply “stay box” you created.
  • Show them how to operate any special equipment, such as oxygen or a wheelchair. Put written instructions in the stay box.
  • Contact the city or county emergency department and find out if you can register your loved one to receive any special disaster check-ins offered to solo, disabled, or medically challenged seniors. If you aren’t sure which agency to call, start with the fire department or police department.

Are your loved ones prepared?
As the Iowa City, Muscatine and Cedar Rapids experts in family caregiving, we at Iowa City Hospice recognize that in the event of a disaster, you will be pulled in many directions. Your relatives may need you while you also are needing to gather those in your immediate household. Take some time to develop a plan. Need help? Give us a call at 1-800-897-3052, toll-free.

Iowa City Hospice