Tag: Caregiver

  • Caregiving: Keeping Parents Healthy – Water, Walking, Watch out for Delirium

    Caregiving: Keeping Parents Healthy – Water, Walking, Watch out for Delirium

    Just call me lunchmeat. Not that I’m complaining, but that’s sometimes how I feel after several years of the pressure and crunch of over-stuffed Sandwich Generation duties. Now my parents are settled into their new home,and the kids are alright. Although I’ve continued to practice geriatric psychiatry part-time, I feel like I can pry open those crusts of whole wheat and move some of those back-burner projects, like writing and sharing health care advice, to the front.

    My mother and father share a room in a nursing home, labeled the “Health Center,” in the continuing care community where they moved four years ago—I had to check my resume for the date—as it was when I last held a full-time job. Both have dementia. My father carries a diagnosis of Alzheimer’s disease. My mother has vascular dementia; her atrial fibrillation caused her heart to throw tiny blood clots to her brain, which led to “mini-strokes.”

    My parents have stayed out of the hospital for almost a year. This is a triumph for my sisters and me, and for the nurses, aides, therapists, and doctors involved in their care. I’ve come up with three basics (for starters here) that have contributed to keeping my parents healthy–water, walking and watching out for delirium. These were important when they were still in their apartment as well. They’re important for everyone.

    Water – Everyone’s heard this before but sometime’s it’s so incredibly hard to get older people (especially your mother!) to drink enough. As we age, we don’t get the ‘thirsty’ signal transmitted as strongly to our brains as when we were younger; it’s easier to become dehydrated. Lack of water can lead to low blood pressure and falls, to electrolyte imbalances and heart problems, to bladder and kidney infections, just to name a few.

    Women of my mother’s generation didn’t walk around with water bottles or some other container of liquid constantly in their hand like many of us do. In addition, as older bladders start to leak, and going to the bathroom requires help, they may hold back on fluids on purpose.

    It’s wise to ask the person you’re caring for what he or she likes to drink. As long as weight or diabetes or some other health issue isn’t a problem, give the person what she or he wants. Juices, tea, coffee, even soda, given that it’s not likely to be very much.

    A plastic cup like they have in hospitals has helped. The handle on the side makes it easy to grasp, and the top and the straw easy to sip from. Putting the person’s name on the cup and maybe a picture he or she likes can help get their attention. How about “Drink to Your Heart’s Content!” I like Alice in Wonderland; I’ll want Alice and a “Drink Me” tag on mine.

    Try to remember to offer (not just suggest) your mom (or dad) the cup as many times as is reasonable whenever you are visiting. Walk in with your own bottle (of water, juice, soda) and say, “I hate to drink alone”, or just “Cheers.”

    Walking – The maintenance of strength, balance, and flexibility as well as getting one’s heart pumping continue to be important whatever your stage of life. Exercise is at or near the top of the list for keeping your brain healthy too. An increasing number of studies show that exercise appears to slow the decline in memory and other brain functions in people who have dementia.

    My father continues to visit the same gym he frequented before joining my mother to live in the nursing home. He pedals the stationary bike and lifts light weights twice weekly with the encouragement and under the supervision of the physical training staff. He looks forward to going to see “the girls,” though he no longer remembers their names. One of my sisters or I must accompany him to the gym (and back), as the building is a couple of blocks from where he lives, and he can no longer navigate there himself.

    My mother goes to physical therapy twice weekly. The therapy room is in the same building as where she lives, so it’s easy for staff to come for her. It’s also another social outlet, with the therapists and other residents. The cost is out-of-pocket and about $60 an hour (per session), comparable to personal-training sessions. (But, Medicare should cover some physical therapy costs if your doctor prescribes it to maintain or restore function and it is provided by a Medicare-certified therapist.) My sisters and I also get both parents walking whenever we can—outside when it’s not too hot (in south Florida).

    Watching for delirium – When my mother told me, “They took me in the middle of the night to a shack in the boonies, a place in the swamp with nothing around except grass that swished all night with the rain . . . ,” I called her doctor to tell her my mother very most likely had another bladder infection and needed to be treated ASAP.

    Although she was speaking perfectly coherently on the phone, my mother had been delirious the night before. She could acknowledge the improbability of the swamp scenario, although she kept referring to it. Her nurse said she had no fever, hadn’t been needing the bathroom more than usual, nor did she feel any burning sensations. This lack of specific symptoms is common in people her age.

    It’s also common for family members to be the ones to notice that mom is expressing strange ideas, or is looking more sleepy or acting more irritably than her usual self. In nursing homes, bladder, or urinary tract infections, are the most common cause of sepsis, which is infection getting into the blood and possibly into other organs. These infections account for one-third of hospitalizations of patients in long-term care facilities, and studies show mortality rates ranging from 4 to 15.5%.

    Dementia is the strongest risk factor for delirium. Even after recovering from an acute episode of an infection with delirium, brain function often worsens. Each time a person becomes delirious, it’s like the tide goes out a little further on his or her brain and never quite comes all the way back in. Besides infections, dehydration can lead to delirium, as can malnutrition, drug reactions, and lack of sensory stimulation, which can occur in an intensive care unit or with very impaired eyesight or hearing

    More about risk factors for delirium and how to recognize it can be found here from the Hospital Elder Life Program for Prevention of Delirium.

    This article first appeared on Just Care on April 3, 2015.

    Here’s more from Just Care:

  • Critical home care is no longer affordable for most people and too often not available

    Critical home care is no longer affordable for most people and too often not available

    Caring for an older person with multiple needs can take a toll physically, emotionally and financially. Reed Abelson reports for The New York Times on how reliable home care is hard to come by and not affordable over the long-term.

    Frank Lee, the husband of one woman with dementia, was tending to his wife morning, noon and night. He ended up putting her in a respite program at an assisted living facility so he could take a short break. While he was away, she fractured her sacrum. Mr. Lee was at a loss to find home health aides he could trust, the plight of many older couples.

    Eight million older adults suffer from dementia or need help with at least two activities of daily living, such as bathing and toileting. Only a small fraction of them–one million–have paid help outside a nursing home. Three million have no help.

    Our federal government does little to help people who need home health aides. Medicare only covers very limited home health health care and, then, only for people who are homebound and who need skilled nursing on an intermittent basis or skilled therapy. People with dementia don’t usually fit these criteria. If you don’t have Medicaid, you are generally out of luck in terms of government assistance and, even with Medicaid, there are often waitlists for home care.

    Most older adults are cared for by family, not professionals. They cannot afford $27 an hour, the going rate for a home care aide. Paying for fulltime home care usually means expenses of tens of thousands of dollars a year. Usually it is the older adult’s spouse or daughter  who takes on the role of caregiver.

    People who can afford to pay for a caregiver often cannot find one with the skills to take care of their loved ones. They are often forced to hire untrained caregivers. Paid caregivers in the US rarely earn a living wage; they often can’t count on fulltime work. And, they tend not to get health insurance benefits. It’s no wonder that there is a shortage of paid caregivers; they can get better jobs for the money.

    What to do? Plan ahead. Talk to your loved ones about likely long-term care needs. Even if you have limited resources, it is better to be prepared. Most people do not have these conversations. Families are often unprepared. Many families cannot save enough to offset the cost of long-term care. But, if you plan ahead, you could qualify for Medicaid.

    Keep in mind that long-term care needs can be extensive. Sometimes, two people are needed just to move someone from one place to another. Without assistance, simple tasks become huge burdens.

    Mr. Lee wonders “What’s the end game look like?” Is it right that he should watch his wife, who is already severely demented and unable to take care of herself or speak, deteriorate further? “As she disintegrates, I disintegrate.” When people are terminally ill–six months or less of life–Medicare covers hospice care, which covers some home care. But, good luck getting it if you’re in a Medicare Advantage plan. And, even in traditional Medicare, finding an agency that will provide hospice care can sometimes be challenging.

    Here’s more from Just Care:
  • Family caregiving: Costly, lonely and stressful work

    Family caregiving: Costly, lonely and stressful work

    Most Americans want to grow old in their homes, where they are most comfortable, not in a facility. But, because the US does not support paid caregiving, which is extremely costly, the job generally falls to family caregivers, which is challenging financially, emotionally and logistically. Michelle Cottle writes an opinion piece for The New York Times on the costly and too often lonely job of family caregiving.

    With little if any help, about 42 million Americans care for an aging person, 50 and older. That is challenging work emotionally and financially. Because the US is an aging nation, more Americans will find themselves as unpaid caregivers needing support.

    By AARP’s projections, unpaid family caregiving amounts to some $600 billion of free services in 2021. A lot of caregiving time can be spent commuting. The cost of not being able to work fulltime or at all drives some caregivers into bankruptcy. Caregivers forego a projected $522 billion a year in income.

    Typically, 25 percent of caregivers’ income goes to helping with expenses of the people they are caring for, such as home modifications, medical bills and housing.

    The stress too often causes declines in health, both mental and physical. Studies show that caregivers are more prone to suffer from depression and cancer and are more likely to die younger than people who are not caregivers.

    We have no system in place to train caregivers to undertake their myriad responsibilities. As the health care system evolves and creates additional burdens on individuals, caregivers often must assume responsibility for providing treatment to their loved ones, such as caring for wounds, administering injections and taking care of IV lines. They must also tackle the myriad health insurance obstacles to care and coverage, generally without assistance.

    Caregivers need to take a rest periodically. But, the cost of hiring caregivers can be extremely high. And, paid caregivers are few and far between in many communities.

    The Biden Administration planned to invest $400 billion in strengthening home care, providing training for caregivers and ensuring they are paid well enough to want to take on the responsibilities. But, Congress ended up cutting these provisions out of the Build Back Better bill in 2022. The President’s current budget proposal calls for $150 billion in Medicaid home care services, but Republicans are unlikely to support it.

    There are bills in Congress to support states in building a corps of trained caregivers. But, the cost of hiring caregivers is generally prohibitive. Medicare does not cover caregiver services except in very limited situations for short periods of time, under its home health benefit. It only covers care for people who are homebound and need skilled nursing or therapy services on an intermittent basis. And, even when it provides coverage, it is extremely limited, perhaps 12 hours a week.

    Medicaid sometimes does pay for caregiving services. But, to qualify, in most states, you can have no more than $2,000 in assets (the value of your home and car are excluded). Moreover, many people with Medicaid are on long waitlists to get caregiving services at home.

    Some states, such as Washington State, have their own long-term-care insurance program. Maine has a pilot program. About a quarter of the states have some paid family and medical leave or allow workers to use some of their sick time for caregiving.

    Here’s more from Just Care:

  • Shortage of home health aides undermines people’s ability to age in place

    Shortage of home health aides undermines people’s ability to age in place

    Since the Covid-19 pandemic, it has become increasingly hard for people to get the care they need at home. The Wall Street Journal reports on a woman with ALS who needed to rely on seven different caregivers over six months because of the shortage of home aides.  This home health aide shortage undermines people’s ability to age in place, and it’s not likely to end any time soon.

    Mary Barket has ALS. She struggles to manage with activities of daily living such as cooking, cleaning and bathing. On some days, she could not get her home health agency to send an aide to help her. She has no family or other volunteer caregiver.

    Without a home aide, the situation can be dire for Barket. She can barely use her hands. And, she can’t go out on her own for food.

    When people must rely on multiple aides, it jeopardizes continuity of care. In order to get the home health care they need, patients and their families have to teach each new aide about their daily habits anew. When do they wake up, nap, go to sleep? What do they eat at each meal? What do they wear? How do they like to spend their days, and more?

    Unfortunately, we are facing home health aide shortages and significantly high turnover rates. The supply chain is inadequate to meet needs for the large number of people who rely on home health care to age in place. Covid-19 has increased demand for aides, making it harder for people to hire them.

    Home health agencies have been increasing wages for home care workers, expanding their benefits, offering training and giving signing bonuses. Agencies are looking to ensure job satisfaction and reduce turnover rates.

    But, annual income for home health aides still averages under $30,000. Average pay remains under $15 an hour, though the agencies generally charge double that or more for their time. The work can be quite difficult both physically and emotionally and the hours unpredictable.

    The US has seen a doubling of home health aides in the 10 years between 2008 and 2018. There were 2.26 million in 2018, up from 900,000. And, the numbers should grow another 550,000 or so by 2033.

    The home health care industry is growing much faster than other industries. But, it is not growing fast enough. Demand for home health care far exceeds supply.

    Do you need to hire home health aides? Medicare covers home health aides to a limited degree for some people needing physical therapy or skilled nursing, who are homebound, for whom leaving home requires a considerable effort. Otherwise, unless you also have Medicaid, you will likely have to pay out of pocket.

    If you’re hiring home health aides, you should look into hiring two, one as backup. You might also want a geriatric care manager to coordinate care and help find back-up aides when a caregiver is not available.

    Be prepared: Keep a checklist with your loved ones daily routines to share with the home health aides.

    Here’s more from Just Care:

  • Five tips for talking to the people you love about their health

    Five tips for talking to the people you love about their health

    Many of us want to help our parents or other people we love as they age. But, we have no idea how to help. For sure, engaging them in conversation is already a big help. If you want to talk to your loved ones about their health, here are five tips for beginning the conversation:

    1. Don’t assume that because your loved ones haven’t shared their health concerns with you that they don’t have any. They may not want to waste your time or cause you any worry. And, if your loved one is uncomfortable, or possibly ashamed, sharing private information even with family members, a more successful approach may begin with gentle expressions of support rather than pressure to accept help.
    2. Express your support to help them maintain a high quality of life and get everything they need from their doctors.  You could ask them what they have heard about health buddies, or a health care proxy. Let them know that sharing their concerns with you or a health care buddy they trust can help ensure they get the care they need. If you sense reticence, consider asking an open-ended question, such as, ‘How can I help you make sure you are getting the care you need from your doctor?”, or “What would be the most important thing for me to know about your health?” This might be more helpful than, “Is there anything I should know about your health.” or “Is your doctor taking good care of you?”
    3. If they are living at home independently, remember that they may be scared to voice their concerns for fear of losing that independence.
    4. If they are worried about spending money on themselves, keep in mind that they might not be addressing a health condition because of the cost.  But the cost of the service may be far less than the risks of not getting treatment. Let them know that there are often free and low-cost resources for people with low incomes.   
    5. Finally, explain to them that it’s generally helpful to have a buddy with you at the doctor’s office to hear what the doctor is recommending, take notes, and make sure all important issues are raised, like medication side effects.

    Remember, everyone’s different. Some of us feel our age and some of us feel like we’re still in college.  Some of us like to talk about our health and some of us keep our conditions to ourselves.  Some of us assume that we should have health problems in older age and don’t take the time to go to the doctor and some seek treatment whenever they have a new symptom.

    (N.B. This post was originally published on January 2, 2017.)

    Here’s more from Just Care:

  • PACE helps older adults stay in their community

    PACE helps older adults stay in their community

    The Program of All-inclusive Care for the Elderly (PACE) is a home and community-based program designed to keep older adults who are at risk for nursing home placement living in their community.  PACE is a partnership between a local sponsoring organization, and Medicare and Medicaid health insurance programs. To become a PACE “participant,” a person must be nursing home eligible. While a person can pay privately for services, most participants have Medicare, Medicaid, or both insurance programs.

    The PACE philosophy: PACE members are called “participants” because they are encouraged to participate in their care–decision making and active care–whenever possible.  The overarching goal of the PACE Model of Care is to keep people living in the community and out of institutional care.  While an individual does not need to visit the PACE Center, which offers adult day programs with wrap around health services, it promotes socialization and addresses common problems of isolation, loneliness, and boredom.

    Who can get PACE? Programs of All-Inclusive Care for the Elderly (PACE®) serve individuals who are age 55 or older, certified by their state to need nursing home care, able to live safely in the community at the time of enrollment and live in a PACE service area.

    How does PACE work? PACE works by providing care and services in the home, the community, and at the PACE center. It is team-based care that provides everything covered by Medicare and Medicaid if authorized by your health care team.  If your health care team decided you need care and services that Medicare and Medicaid doesn’t cover, PACE may still cover them.  The team provides comprehensive coordinated care and includes the PACE participant, physician, nurse, social worker, recreational specialist, rehabilitation specialists, and transportation specialists.

    Services: Delivering all needed medical and supportive services, a PACE program is able to provide the entire continuum of care and services to older adults with chronic care needs while maintaining their independence in their home for as long as possible. Services include the following:

    • adult day health care that offers nursing; physical, occupational and speech/language therapies; recreational therapies; meals; nutritional counseling; social work and personal care;
    • medical care provided by a PACE physician familiar with the history, needs and preferences of each participant;
    • home health care and personal care;
    • all necessary prescription and over-the-counter medications;
    • medical specialties, such as audiology, dentistry, optometry, and podiatry and speech therapy;
    • respite care; and
    • hospital and nursing home care when necessary.

    See more at: http://www.npaonline.org/policy-advocacy/value-pace#services

    Find a PACE program near you: Currently, there are 144 PACE organizations in 30 states serving 58,000 people. To find out if you or a loved one is eligible, and if there is a PACE program near you, visit www.pace4you.org or www.Medicaid.gov, or call your Medicaid office.

    Beware of for-profit PACE programs: Government audits find for-profit PACE program neglects patients, delays needed care and cancels critical care.

    Learn what to do to ensure safety at home for people aging in their communities. And, see how one new program is helping older adults remain at home with assistance from a handyman, occupational therapist and nurse. For those who like technology solutions, check out how sensors can offer peace of mind to caregivers.

    _________________________

    This post was originally published on March 2, 2016

    Here’s more from Just Care:

  • HIPAA and why you need a health care proxy

    HIPAA and why you need a health care proxy

    In 1996, more than 25 years ago, Congress enacted the Health Insurance Portability and Accountability Act, which aims to safeguard people’s private health care information. Keeping people’s health care information private is important. But, HIPAA sometimes also keeps doctors and hospitals from sharing key information with you about the people you love. HIPAA provides all the more reason everyone should have a health care proxy–someone you designate, whom you trust, who can speak for you and ensure your wishes are honored, when you cannot speak for yourself.

    Without a health care proxy (sometimes called a “medical power of attorney” or an “advance directive,”) your family has only limited rights to make health care decisions on your behalf. And, at times, doctors and other care providers are not aware of these rights or misunderstand them, preventing your family from making needed decisions. Stories abound of family members not able to get information from the doctor about a loved one’s condition because of HIPAA. HIPAA does not keep this information from being shared in many cases, but doctors and hospitals often misapply it.

    For your own peace of mind, make sure you and the people you love have signed health care proxies. They are state-specific. You can download them free here. With a signed health care proxy, you know that someone you trust can speak on your behalf if you’re hospitalized and unable to speak for yourself. Without a health care proxy, that person may not be able to help you at all.

    Ideally, you should give a copy of your health care proxy to the person you have designated as your proxy as well as to your doctor. If you don’t share it with the person, make sure your health care proxy knows where to locate it in your home. It’s of no use if your proxy does not have a record of it. For more reasons why health care proxies are so important, click here.

    What does HIPAA allow? HIPAA does allow doctors and other care providers to disclose a person’s health information to family members or close friends when in their professional judgment it’s in the best interest of the patient. And HIPAA only applies to care providers, health insurers and health data collectors, not clubs or churches or other organizations. So an assisted living institution or nursing home can let people know about the condition of their loved one.

    Updated from September 23, 2015 and December 31, 2018.

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  • Roundup: Caregiving

    Roundup: Caregiving

    Over the last several years, we have posted a series of pieces to help caregivers care for an aging loved one. You can find most of the key posts in this roundup:

    Planning ahead

    Caring for an older friend or relative

    If you do not live in the same city:

    If you live nearby:

    No matter where you live:

    Caring for a loved one with dementia or other serious condition

    Resources for caregivers

    Resources to benefit your loved ones:

    Resources to help yourself:

    Housing that comes with caregiving

    When the caregiving ends

    Here’s more from Just Care:

  • Caregiving has become increasingly common, challenging and costly

    Caregiving has become increasingly common, challenging and costly

    We are an aging population. And, caring for older adults is costly. Not surprisingly, family caregiving is becoming increasingly common and challenging. It is unreasonable to assume that most older Americans have family and friends who will be able to care for them when they are unable to care for themselves and still make ends meet. Congress should step in to put in place systems and protections that ensure older adults get the care they need without overburdening family and friends.

    Anne Helen Petersen reports for Vox that nearly 42 million people in the US are volunteer caregivers for adults over 50. They represent almost 17 percent of the population. Many of these caregivers are so stretched that they are hard-pressed to make ends meet.

    Nearly three in ten (28 percent) caregivers are unable to save money. More than one in five caregivers are assuming more debt and/or have no short-term savings. More than one in ten of them cannot pay for essentials such as rent and food.

    More than one in four caregivers are young, either millennials or Gen Z. Increasingly, they provide care in their homes.

    The workload for caregivers has grown in just ten years in part because people are living longer. Caregiving involves cooking and cleaning as well as medication management, bathing and providing transportation. Only three in ten caregivers pay others to help with caregiving.

    Caregiving takes a huge toll on people’s mental and physical health as well as finances. And, there’s no system in place to help caregivers. Most people don’t even think of themselves as caregivers. They think of their work as helping out their loved ones.

    Family caregivers are effectively invisible, which makes their situation all the harder. They often step in to help because they see themselves as having no choice. AARP believes more than half of them find themselves in that situation. Paid caregiving is unaffordable. Caregiver coordination is also taxing.

    What is to be done? One elder care expert believes that the federal government should at the very least manage a web site that details caregiver resources by state and community. More money should be available for Area Agencies on Aging, as well. These “Triple As” provide resources to older adults.

    What is really needed is a comprehensive federal long-term care program. The budget reconciliation bill allocates money for community and home-based services for people with Medicaid but not for people with Medicare. That is a beginning, but not enough.

    We also need to improve nursing home care and pay caregivers better wages and benefits for the work they perform.

    Here’s more from Just Care:

  • Coronavirus: Coping with dementia

    Coronavirus: Coping with dementia

    It’s hard enough for people in great mental health to sleep at night or to cope from one day to the next during this pandemic. Imagine the toll the novel coronavirus is taking on the nearly six million older people with Alzheimer’s disease and other types of dementia. Heidi de Marco reports for Kaiser Health News on the difficulties they and their loved ones are facing.

    If you are looking for assistance with caregiving for a loved one with dementia or other care needs, EngAGED is a national resource center that might be of help. It offers information on programs that provide telephone reassurance and wellness checks, help for people with dementia and other resources for older adults.

    More than four million people with dementia still live in their homes, alone or with family. During this pandemic, they are living a very different life. Their daily routines have changed as has the world around them. It can be challenging for them to understand why their family and friends are not visiting and why they can’t go to the supermarket or the bank. They might find it difficult to understand why people around them are wearing face masks and why they must as well when they are out in public. All of this threatens their health and well-being further.

    When home, reading the news can be downright chilling. Combine that with social isolation, and many older adults are facing serious stress and anxiety. Life becomes more emotionally challenging and all the harder for older people. And, caring for them becomes all the more difficult for the 16 million family caregivers in the nation.

    Old ways of providing personal support through social interactions are no longer available. Support systems for people with dementia, to the extent they are available, are online. Many older adults are not capable of interacting with others virtually. And, those people who can go online do not get the same benefits online as they would in person.

    Again, for guidance on resources to help the older people you love through this pandemic, check out EngAGED.

    Here’s more from Just Care: