Tag: Caregiving

  • 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:

  • The challenges of caring for aging parents in the US

    The challenges of caring for aging parents in the US

    An article in The New York Times by Reed Abelson and Jordan Rau captures the plight of family members caring for aging parents in the US. The journalists profile several individuals who are managing care for parents and grandparents, with cancer, dementia and other complex conditions. One woman sums up the situation with these words: “The health care system for the elderly is neglected, broken and inadequate to meet any demands, even the basic needs.”

    To be clear, if you are not eligible for Medicaid, your long-term care costs could be exorbitant. Medicare does not cover long-term care. For many people, long-term care costs are unaffordable. Even with Medicaid, it can be hard to get long-term care.

    Medicaid should be picking up the costs of long-term care for people with low incomes. But, eligibility requirements are restrictive, and even when people meet them, there can be long waits to get needed care. There are not enough health aides, so agencies will hire anyone who is willing to take on this role. When aides don’t show up, replacement aides are hard to come by.

    To keep costs down, often children of aging parents bring their parents in to live with them. And, while that makes it easier to ensure they are getting needed care, it can keep them from working outside the home. In some cases, older adults cannot be left alone. To make ends meet, adult children are forced to institutionalize their parents so they can work outside the home.

    Single adults, living alone and needing to care for aging parents, are in a particularly difficult bind. They lack a partner to share the work of caring for aging parents, while earning an income to sustain themselves. Unless they are wealthy, they have few options when their aging parents develop dementia or otherwise need ongoing help with activities of daily living and are in need of fulltime care.

    A 60-year old actor from Topeka, Kansas explains that it cost $8,000 a month to provide just eight hours a day of care for her mom. That cost is not sustainable for the vast majority of Americans with limited savings. Then, her mom fell, broke her sacrum, got 100 days of Medicare rehab and was once again left without a viable care plan. Her daughter and her siblings cashed out her life insurance policies to pay $65,000 for a year of nursing home care. Medicaid eventually picked up some of those costs after her mom spent down more of her assets. Now, her mom has died and the state is asking for almost $20,000 back.

    A California professor and his wife had a plan for his mom, one that would not destroy his own retirement savings. But, his mom lost some cognition after a stroke. The least expensive way to care for her was at an assisted living facility, costing $4,500 a month. His mom only gets $1,500 a month from Social Security and has no other funds to cover these costs. He negotiated with the assisted living facility and launched a GoFundMe campaign. But, in his 60’s, he’s figuring out what new work he can do to pay the balance of his mom’s monthly bills.

    A 60-year old retiree from Greenville, South Carolina explained that her mom, was getting terrible care in an independent living facility. No one was engaging with her. Before long, her mother got sick and needed a wheelchair to get around in her assisted living facility. The assisted living facility cost $8,000 each month and was quickly depleting her $120,000 in savings. She had no additional financial support beyond $2,500 a month in retirement income. Her daughter and son-in-law were unable to get away until she died.

    A 55-year old college professor from Vermont found a new home for her family so that she could move her mom in to live with them. Her mom had been in California, where she could not drive any longer or otherwise adequately care for herself. Her mom had dementia. Adult care was extremely costly. Moreover, her mom became violent. No nursing home would take her. She was sent back to live with her family, who had to give her drugs to calm her. She died soon after.

    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:

  • Five ways to ensure the people you love are safe and healthy 

    Five ways to ensure the people you love are safe and healthy 

    At least once a year, every caregiver should engage the older people they love in what can be difficult conversations. No child looks forward to being a parent to her mom or dad; no one wants to have to speak with a spouse about exercising more, rethinking a medication regimen or considering stopping driving.  But, that’s often what needs to happen. Here are five ways you can help ensure the people you love are safe and healthy.

    1. Make sure they get an annual flu shot.  This should be easy since often the local pharmacy will administer the shot.  The shot minimizes the risk that older adults will develop flu-related health problems, including pneumonia and worsening chronic conditions. [Editor’s note: Also make sure they get their Covid-19 vaccine and booster shots.]
    1. Check out what drugs they are taking.  And, make a list of them, along with the names and phone numbers of their doctors, both for yourself and for their wallets.  If they keep the list on them, and you have a backup copy, it will help ensure their doctors are best prepared to treat them.
    1. Ask them about painkiller prescriptions they take as well as over the counter drugs, like Tylenol.  Too much acetaminophen can be dangerous. Prescription painkillers, such as Percocet or Vicodin, can be even more dangerous, particularly if mixed with alcohol, tranquilizers or other drugs.
    1. Try to nudge them to exercise. A brisk walk can reduce the likelihood of stroke and help prolong their lives. If they are not inclined to move, ask them what might get them out of the house.  Sometimes, a companion can make all the difference.  Anything they can do to move their bodies is great, including in hospital. Sometimes, showing them some easy exercises can work.  You can find simple balance exercises that the National Institutes on Health recommends here. For information about free and low-cost exercise programs in your community, visit the eldercare locator.
    1. Talk to them about driving if they are still driving. Many people can drive all their lives.  But, both mental and physical reflexes can weaken as you age.  The National Institute on Aging offers great advice on when and how you can help someone you love decide to stop driving.

    And, if you need help motivating them to change an unhealthy behavior, here are six tips that could help.

    Of course, there’s more you can do, including making their homes easier and safer to live in: for example, make sure floor surfaces are smooth to reduce the likelihood of tripping, install ramps and  raise toilet seats. More on that in a separate post.

    (This post was originally published on April 10, 2015.)

    Here’s more from Just Care:

  • Caregiving: A mediator could help minimize stress among siblings caring for an aging parent

    Caregiving: A mediator could help minimize stress among siblings caring for an aging parent

    Growing old can be difficult, not only for yourself but for your loved ones. It is not uncommon for siblings to drift apart or, worse still, do battle, around how best to care for an aging parent. Next Avenue reports on an interesting strategy for reducing caregiving tension and worry: Hire a mediator.

    A mediator helped one family reach consensus around whether their mom should move into an assisted living facility. The mediator helped them to each share their views, without a lot of emotions at play. The mediator helped them select the assisted living facility and to assume different responsibilities for the move.

    There are always myriad considerations and many items to nail down. One sibling took responsibility for talking to their mom about stopping driving. Another agreed to help their mom with finances. One took responsibility for medical issues.

    Mediators can be a help with a range of elder care issues. There need not be any legal disputes. The goal is for the family to reach agreement as peacefully as possible.

    Mediators will usually speak with each family member individually, including the older adult if possible, to give everyone a voice, get a sense of where people stand on key issues and each person’s ability to be helpful. After that, the mediator can lead a zoom or in-person meeting of the family.

    At the end of the day, every family member will understand all that needs to happen and each person’s role in making those things happen.

    Does your family need a mediator? It depends on how much you are getting done without one and how much stress it entails. Try not to wait for a medical emergency.

    Caregiving is filled with important responsibilities: medical, financial, legal, domestic, you name it. Here’s a link to a range of things you might want to think about if you’re caring for a loved one. Getting the job done is time-consuming and often terribly painful even without the added stress of reaching consensus with others. The goal is to make it as joyful and stress-free as possible.

    Here’s more from Just Care:

  • 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:

  • Grandfamily housing: A means to support multigenerational caregiving

    Grandfamily housing: A means to support multigenerational caregiving

    Grandparents are increasingly caregiving for grandchildren and other young relatives. Carly Stern reports for The New York Times on a growing trend of multigenerational caregiving and housing that sometimes goes with it. Grandfamily housing supports multigenerational caregiving; we need more of it.

    Today there are some 2.3 million grandparents caring for children. Some of them are lucky to find affordable multigenerational housing options in new communities, such as Bridge Meadows in Oregon, the Fiddlers Annex in Smithville, Tennessee, the Grandparent Family Apartments in the Bronx. NY, and Plaza West, in Washington, D.C.

    These new multigenerational communities help older adults with low incomes living with younger relatives. They provide mental health and other social supports.

    Grandfamily housing is quite new. There’s not a whole lot of data available on them. We know only that multigenerational housing is in very short supply. There are about 2.7 million kids being raised in grandfamilies and only 19 known grandfamily housing communities. Public-private partnerships fund most of these initiatives.

    Only about one third of grandparents in grandfamilies get housing assistance of any kind. It is particularly hard for grandparents to get support if they are not the legal guardians of the children they are caring for. Without assistance, it is challenging for many of them. One in four are raising children with disabilities.

    As it is, housing costs can be exorbitant and eat into a sizable portion of people’s income. More than ten million older adults spend more than 30 percent of their income on housing. Many grandparents in grandfamilies cannot live in senior care facilities because these facilities do not allow kids. Their need for housing and social supports is profound.

    Congress has introduced legislation, The Grandfamily Housing Act, that would expand the number of grandfamily communities and would pay for renovations to help ensure grandfamilies live safely.

    Here’s more from Just Care:

  • Caregiving: How to prepare for a visit to aging loved ones

    Caregiving: How to prepare for a visit to aging loved ones

    Now that the pandemic is somewhat behind us, we are reconnecting in person with older friends and family members. If you’d like to help them with the to-do list they were forced to put on hold for so many months, here are some suggestions from the New York Times and elsewhere.

    Start by asking them to put together a list of the things they would like help with when you see them. If possible, have them let you know what’s on the list before your visit. If you want to help with the list, here are the items you might want to cover.

    Before your visit:

    1. Doctors’ appointments: Most people skipped preventive care visits during the pandemic. Are there doctors’ appointments that are overdue? If so, schedule those.
    2. Home maintenance: Most likely some appliances are no longer working and need fixing. Other items around the house might also need attention. If so, arrange for service people to come to the house.
    3. Legal matters: Do the people you love have a healthy care proxy, someone they’ve named to speak for them if they can’t speak for themselves and that it is documented in an advance directive legal document? If so, you should find out who that person is and, if possible, get a copy of the document. Someone also should have durable power of attorney to take care of financial matters if they are unable to do so.

    During your visit:

      1. Time your activities around your loved ones’ schedules. Try to engage them when they are most alert, in the morning or after a nap. And, try to meet all the people in their circle, including caregivers, neighbors and others who they spend time with. Having contact information for those people could be invaluable over time.
      2. Assess how your loved ones faring mentally and physically. How independent are they? Are they able to cook for themselves? Are they taking their medicines? Check the dates on any prescription pill bottles to see whether their prescriptions are up to date. If not, ask whether they would like a pharmacy to deliver medications to them.
      3. Talk to them about their hearing. Can they hear the phone, the doorbell and the TV? Explore with them whether they would like a hearing aid.
      4. Discuss the location of various items in the house. How easy is it for them to access what they need? Find out whether they think it would be helpful to rearrange items for easier access. Offer up your muscle to move items inside or outside the house.
      5. There could be tripping hazards in the house. Steps, throw rugs, wires. Would they like some nightlights? Do they still want the throw rugs or are they more of a nuisance that could lead them to fall? Would it be good to have an electrician come in to put in electric outlets in more convenient places and to reduce the possibility of tripping over electric cords?
      6. Confirm that their balance is good. If not, discuss what you might do to help them from falling. Are guardrails needed in the bathroom? Talk to them about doing balance exercises and other exercise for mental and physical health.
      7. Draw up a plan for caregivers if there isn’t one. Talk with your loved ones about what their ideal weekly schedule looks like, in terms of outings, meals, exercise and social and cultural events. Include contact information for the most trusted people in their circle.
      8. Make sure there’s a file that contains all the basic information needed to care for them if needed.

    Here’s more from Just Care:

  • Six reasons why you and your loved ones should create advance directives

    Six reasons why you and your loved ones should create advance directives

    Advance care planning is important for your peace of mind and for the people you love. You should begin care planning by creating an advance directive. An advance directive is a legal document that generally includes a living will and names a health care proxy. The living will states your wishes about your health care if you cannot speak for yourself and your health care proxy is someone you name to act on your behalf regarding your medical treatment if you are unable to speak for yourself.

    Here are six reasons why you and your loved ones should create advance directives, even if you’re in good health.

    1. An advance directive is free and easy to create. Advance directives need to be in writing, but creating one comes at no cost and is generally an easy process. Click here to learn what free resources are available and how to download a free advance directive.
    1. An advance directive helps you think about the goals you have for your health and health care. Making decisions about end-of-life care isn’t easy. Some people value prolonging of life over all else, where others prioritize relief of pain and suffering or the effects of one’s care on loved ones. Whatever you decide, planning ahead can help you consider these important issues and communicate them with your friends, family and healthcare providers in a time and place where you can think things through clearly.
    1. An advance directive helps you prepare for unexpected medical situations. Many people think that they do not need to plan for their care until they reach the later stages of life. However, end-of-life situations can happen to anyone. Creating an advance directive ensures you are prepared for any medical situation that may come your way.
    1. An advance directive comforts your family and loved ones. Caregiving is hard. It’s stressful to make an end-of-life decision for someone you love if you don’t know their wishes. And, it can cause friction within a family if people’s views are not aligned. Completing an advance directive and sharing it with the people you love helps bring your family together and provides comfort to them that they are following your wishes should they need to act on your behalf. An advance directive is a legal document that doctors and hospitals must honor. The advance directive ensures the people you love can make decisions on your behalf. 
    1. An advance directive allows your doctors and other care providers to better understand you and your desires. By creating an advance directive and sharing it with your doctors, you are telling them that you are informed and involved in decisions about your care. This can reinforce a meaningful relationship between you and your doctors that, in turn, can serve as an important source of emotional support during difficult times.
    1. An advance directive speaks for you when you cannot speak for yourself. Most importantly, an advance directive makes sure you are treated the way you wish to be treated, no matter what the circumstance. (Of course, if your treatment priorities change, you can change your advance directive.) Click here for a Jon Stewart interview of Dr. Atul Gawande about the value of  sharing your end-of-life priorities with the people you love repeatedly and over time.

    After you’ve created your advance directive, be sure to give a copy to your doctor as well as to the people you love. And, if you’re not ready to share it with the people you love, at least be sure they know where you keep it.

    To learn about Medicare coverage of hospice care, click here.

    [NB: This post was originally published on May 8, 2019.]

    Here’s more from Just Care: