Caregiving From a Man’s Point of View

Historically, caring professions have primarily been populated by women of all ages. As children, girls are encouraged to take on responsibilities like caring for younger siblings, or as teens finding jobs as babysitters, while boys are directed toward traditional gender roles like lawn care and household maintenance. From our earliest origins, young mothers have borne the primary responsibility for raising their infants and children while men provided food, shelter and other life necessities. In the shifting cultural norms of today’s world, however, much has changed and recent surveys indicate that men exceed 40% of the family caregiver population. Men co-parent, do the cooking and housekeeping and enter caring professions like nursing and senior care at a higher rate than ever before.

For those men who choose a caring career path, the choice allows for the development of skill sets that were perhaps not previously honed, but for men who find themselves unexpectedly thrust into the role of family caregiver, the transition can be awkward, uncomfortable, or even terrifying!

My brother was my mother’s caregiver for several years. He checked up on her almost daily, making sure she was eating, staying healthy, and well provided for. He helped with her car maintenance, took care of her yard work, and tackled household maintenance whenever necessary. While he never bathed her (and I did on numerous occasions during her last year), my brother took great care of my mother during the last decade of her life. He arranged for professional CAREGivers through Home Instead’s local office when she began to need more companionship than he could provide. Gradually these wonderful individuals took over her household cleaning, laundry, and finally driving for shopping and errands. She grew to depend on Laverne and others to keep her as independent as possible. Whenever I came to visit, however, she told Home Instead she wouldn’t need anyone during the days I was there. I understood intimately how much care she needed during those times, but my brother used the resources he had available to him to fulfill his caregiver role when I wasn’t present.

Male family caregivers are often overlooked mostly because they care quietly, and don’t talk about their wants or needs. They internalize and suppress their stress and anxiety about providing the most intimate of care for their loved ones, going stoically about the tasks that might be embarrassing or difficult for themselves and their aging parents or others. Men may have the advantage when it comes to size and strength, so these attributes may be assets to their new role as a family caregiver, but these physical attributes might be offset by the emotional burden of caring for their loved one. AARP offers videos that can encourage men who find themselves caring for others.

Seth Goldsmith found himself caring for his wife of 20 years following her diagnosis of ovarian cancer. Here are his ten steps for effective caregiving, gleaned from his experience and observations of others in his shoes.

Simply asking for help, finding peers who can offer support and encouragement, or even talk about your experiences and feelings with others who are going through similar circumstances can change how it feels to be a male caregiver.

Here are observations on how spousal caregiving differs from caring for an older family member, offered by Caring.com.

Chris and I hope you will join our conversation this week here at Heart of the Caregiver and share your heart about the men who care in your world.

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Hoarding: What’s the Big Deal??

Hoarding and hoarders are not new to our society, but in 2009 the issue took the spotlight with a show produced by A&E titled “Hoarders.” People all over the country tuned in to watch the lives of those dwelling in beautiful homes stuffed to the rafters on the inside with so much junk, trash, and even dead animals or human waste that the residents wouldn’t even open the door to allow visitors to enter.

In the course of providing homecare in my community, I have been in the homes of hoarders many times. In some of these homes, I found rooms stacked with high piles of newspapers, magazines, boxes and various items, leaving narrow walkways to move about and creating a dangerous environment that invited vermin and insects as well as a risk of fire. Usually, the homeowner wouldn’t admit that their living environment was unsafe or even unusual, although they were fiercely protective of their possessions and their privacy.

Even my mother had some minor hoarding tendencies. I realized this when I found many small plastic cookie containers while cleaning out her kitchen. She must have two hundred when I discovered her “hoard.” I quickly discarded all but ten, thinking that if she came up with a purpose, she would still have a few. She also kept every card anyone ever sent her. I sorted through hundreds of these after her death and found Mother’s Day cards drawn by my own 6-year old hands. These habits did not endanger my mother in her later years, but they did create quite a mess to sort through after her death.

Hobbies that involve collecting specific items are activities that include family members and enhance relationships. Hoarding tendencies can tear families apart because, for the person that hoards, the hoarded items are their relationships, and the hoarding behavior inhibits healthy social relationships. Hoarding disorder can destroy families, friendships, health and quality of life if left untreated, but as with any mental illness, there are right ways and wrong ways to address the subject.

If you have a loved one that you feel might be exhibiting hoarding behaviors that could endanger them or others, here’s a list of symptoms.

Here are some do’s and don’ts for helping someone with Hoarding Disorder.

Matt Paxton, one of the hosts of A&E’s “Hoarders,” shares tips for how to declutter a Hoarder’s home here.

Finally, remember that prayer, patience, and love are your most valuable tools when helping a hoarding loved one. True hoarding is a mental illness frequently associated with Obsessive-Compulsive Disorder and is not simply or quickly treated. Ask your local Area Agency on Aging for resources or check with your church or local social service agencies for help with your loved one’s situation.

Chris and I hope you will join the conversation and share your stories about finding a light at the end of the hoarding tunnel.

Options: Skilled Nursing Facilities

My mother used to tell me that when she got old and couldn’t live at home anymore, she planned to go to a nursing home. She was adamant that she didn’t want to be a burden on my brother or me by needing to move in with one of us. I bought a house with an “in-law suite” just in case. As she grew older and visited more friends who lived in such places, her eyes were opened to new facets of nursing home residency. One day she called me and said, “I never want to live in a nursing home!”

Today nursing or convalescent homes are more appropriately called Skilled Nursing Facilities, or “SNF’s” (pronounced “sniff”). These facilities offer onsite 24/7 medical services, medication administration and management, and a range of therapies as well as social activities, personal care services, and meals. While the need for skilled nursing services should not dictate placement in a SNF (because in-home options are also available), sometimes a referral to a SNF is an appropriate option. SNF placement is generally reserved for those who need a significant amount of care or total care.

Private pay skilled care in a SNF is costly. Medicare Part A may cover a period of time in a SNF under certain circumstances. Click here to learn more about the details on what Medicare will cover. Medicaid SNF’s are also available, but if your loved one qualifies for Medicaid benefits and needs to be placed in a SNF, they may need to wait for a bed to open up or be placed in a facility many miles from where they currently reside because bed space is available in another location.

Most people don’t just decide to move into a SNF. Unlike most other residential care options, SNF’s usually offer semi-private rooms, meals, medications and skilled nursing services. A hospitalization precedes most admissions. If you have the luxury of choosing a SNF for your loved one, you need to visit and get a feel for the facility. Here’s a link to 10 tips for selecting a SNF.

If your loved one is in a SNF, Chris and I always recommend that you visit often and get to know the professional caregivers on staff there. Stay involved in your loved one’s life as much as possible. This involvement will ensure that you are still seen as a part of the care team, and your loved one will receive better care because of it. No one should ever aspire to move into a SNF, but these facilities do have an essential role in the aging care continuum. A SNF placement can be hugely beneficial to the care recipient and their family as well.

We hope you will join our conversation this week and share your heart about Skilled Nursing Facilities.

Click here to learn more.

Self-Neglect and Failure to Thrive

At the age of 90, my mother planned to step down from teaching Sunday School and coordinating her church’s homebound ministry. Then, unexpectedly, her church underwent a split, and she felt she had to remain actively involved to keep those ministries going. She continued teaching and visiting for several more years.

When she finally did “retire” from these activities in her mid-90’s she underwent a transformation that greatly concerned me. Suddenly my mother was no longer active socially, and she was always a very social person. She mostly sat at home in her recliner and watched TV or the hummingbirds at the feeder in her yard. Over time she stopped going to lunch with friends. She began to wear the same clothes day after day, and she never ate a real meal except with my brother or me. She bathed infrequently, slept later in the mornings, and had little energy. She lost weight and was thrilled by this, although her doctor told her she should not be losing weight at her advanced age.

Sometimes family caregivers find themselves caring for a family member who doesn’t want to take care of themselves. When someone stops caring for their health or their environment and refuses help from others, their situation may be described as self-neglect. Possible causes for this condition include mental illness, chronic diseases or even a side-effect of some medications. It might also be caused by a loss of motivation due to impaired physical ability.

Failure to thrive is similar to self-neglect but is a medical diagnosis usually indicated by depression, impaired physical abilities, malnutrition, and mental decline. Symptoms may include weight loss, lack of appetite, and inactivity. These symptoms described my mother to a “T,” but her doctor never applied a diagnosis because of my mother’s very social nature. She perked up whenever she went for a doctor’s appointment, smiling and laughing while chatting with the doctor, so nobody ever saw her symptoms.

If your loved one is exhibiting signs of self-neglect or failure to thrive, you probably feel great concern and frustration when he or she refuses to eat, bathe, or otherwise care for themselves; but there are ways to enhance their quality of life.

First, you should talk frankly with your loved one. Ask your father to talk about how he is feeling or what he wishes he could do now. Encourage your mother to stay as active as possible. If she played bridge, invite friends over and ask her to teach you all the game. If your dad enjoyed the coffee club at a local fast food restaurant, why not suggest you both go one morning and see if you can help him to rejoin that group.

If possible, go with your loved one to a doctor’s appointment and ask questions. Ask your mother to tell the doctor about how she sleeps, or what she eats for meals. If your father is depressed, ask the doctor to prescribe a mild anti-depressant. Review a current medication list and ask if any of these medicines could be causing your loved one’s decline. Also, check for organic causes such as a UTI or a blood clot.

If a physical disability has curtailed your loved one’s engagement, ask the doctor if physical or occupational therapy might help improve things like mobility or hand-eye coordination. If incontinence is a problem, encourage your loved one to start wearing protective undergarments. This one thing might give him or her the confidence to venture out and re-engage in life. Fear of bathroom accidents is a significant deterrent to social engagement among the older population.

Finally, click here for more suggestions on how to help with failure to thrive or here for ideas on managing self-neglect.

Also, don’t let yourself fall into self-neglect as a family caregiver! Remember that self-care is one of the things that will help you give great care to your loved ones. Click here for ideas on how to take great care of yourself as a family caregiver!

Chris and I hope you will join our conversation here and share your heart about dealing with self-neglect or failure to thrive in a loved one or yourself. Who knows, your words can make a difference in someone else’s care world!

Summer Heat and Senior Care

How is your summer going? Are you staying cool and comfortable as we enter the hottest part of the season? How about your mom or dad? When the summer heat rises, your job is to make sure your loved one is safe and secure. Seniors’ bodies don’t adapt quickly to changing temperatures, so you should build in strategies to protect your older loved ones from overheating during the dog days of summer.

For some seniors, chronic diseases or their managing medications can impair the body’s internal thermostat, making them more intolerant to extreme heat or temperature swings like moving from an air-conditioned house or car into the sweltering sunlight. Multiple sclerosis, diabetes, obesity, and fibromyalgia are a few of these chronic conditions that impair a senior’s ability to tolerate summer’s heat. Poor circulation can also make a senior feel cold even when temperatures are hot, leading to inappropriate clothing choices that trap body heat which could lead to heat stroke.

Here are a few suggestions to help you successfully keep things cool as a family caregiver:

  1. Proper hydration is essential for both you and those you care for during hot weather. Keep a glass of water on hand. Encourage your loved one to drink throughout the day- most doctors recommend eight glasses. If water is distasteful, add a little fruit juice or carbonation for a more interesting drink. Be careful of sugary soft drinks, caffeinated, or alcoholic beverages as these don’t offer adequate hydration!
  2. Wear seasonally appropriate clothing, keeping in mind that you both probably need to dress in layers so you can add or subtract as needed when moving from one extreme to another throughout the day. Consider that your loved one might prefer to have the house warmer than you would like; my mother always kept the thermostat set in the upper 70’s no matter the season!
  3. Summer meals should contain lots of locally sourced fruits and veggies, and cold foods like salads and fruit are all smart components that can help you manage your loved one’s comfort and health during the hottest weeks. Avoid using the oven if possible or use it early in the morning when temperatures outside are lowest. Try using the microwave or toaster oven to avoid heat buildup in the kitchen.
  4. Try to plan errands and appointments first thing in the morning to minimize temperature swings as you move between indoors and outside, and leave the car windows cracked to help with heat buildup. A windshield shade is also a great idea. Activities like gardening or walking should be done in the early morning or after sunset. Sunglasses and a wide-brimmed hat are excellent additions to everyone’s summer wardrobe!
  5. If the house isn’t air-conditioned, summer is an excellent time for day-trips to the library, your local senior center, going to the movies or enjoying a meal out. Doing these activities during the hottest part of the day can give both of you a much-needed break from the warm house.

For more tips on how to keep yourself and your senior cool during a long, hot summer, check out these 12 Summer Safety Tips for Seniors. And remember, working ahead and having a plan is the best way to navigate family caregiving and stay cool during summer’s heat! Chris and I hope you will join our conversation and share your heart about ways to keep cool this summer.

When Someone You Love is Resistant to Care

As my mother aged into her 90’s, she began to need help with things like driving and grocery shopping. Always a strong independent woman, she resisted any suggestion that it might be good to have a little help. At the time I visited about twice a year, at Christmas and in the summer months. Since I only saw my mother infrequently, I saw the speed of her decline much more clearly than my brother. Each time I visited, I told my brother that we needed to get Home Instead in to help her. Each time he spoke with her about this, she refused. Her resistance to care was worrisome, but not yet critical.

In 2012 she got sick during the winter months, and her recovery was slow and arduous. She had no energy for housekeeping, laundry, or running errands. I came more frequently because I knew she needed more help. Once there, I encouraged her to let Home Instead come in a few times each week while she regained her strength, and she agreed. I think it was a relief to have the help, and after a few different people, she found a CAREGiver she really liked. Laverne was with her for five years, right up to her death in December of 2017.

For seniors, independence is an essential part of their identity. The ability to make choices about what they wear, what and when they eat, or when they leave to run errands allows them to still have a measure of control in their life, even if their physical or mental abilities are declining beyond their ability to maintain the independence they have enjoyed for so long a time. Their refusal to accept help, in spite of mounting evidence to the contrary, is another attempt to maintain control of their lives.

To get your parent or loved one to accept help, you might need to try several different approaches.

  • First, you need to get an honest assessment of what assistance your parent truly needs. Often family caregivers will think a loved one needs around-the-clock care when the reality is their family member needs a few hours each week to enhance their quality of life and sense of self-esteem vastly. Home Instead has developed an instrument that asks a series of questions and delivers an objective assessment of how much care is genuinely needed.
  • Next, you should talk with your parent about trying out care for a few weeks to see if it might be of value. If cost is a concern, discuss this through with real information like the range of price, whether Medicare or Medicaid will cover the cost, and if a Long-Term Care (LTC) policy is an option. If a family member provides the care, some LTC policies will pay for this care as well.
  • Another approach might address your concerns for your dad’s safety if he refuses the care. He might accept the help if it is described as a personal chef or assistant rather than a nurse aide or caregiver. The more professional title might make him feel more pampered and less “needy.”

For more suggestions, check out this article from AARP: When Angry Loved Ones Resist Caregivers or this article from Caring.com.

In my mother’s eyes, to need help meant she was weak. She also enjoyed time alone in her home, and the CAREGiver’s presence felt like an intrusion. Initially, she resented the need to plan out her time when the CAREGiver came. After a few weeks, however, they settled into a routine that became comfortable and congenial. Laverne started out as more of a housekeeper, but in later years she helped my mother with bathing, dressing, and toileting. As my mother’s abilities to care for herself continued to decline, Laverne was able to help her remain independent in her own home. Because my brother and I were finally able to overcome her resistance to care, our mother lived the way she wanted, right up to the day she died, at home and surrounded by her family.

 

The Freedom to Forget

This week our family will celebrate our nation’s birth. Like many others, we will gather with friends and family to exercise our freedom to live, work, play, and party as we may choose, so long as we stay within the boundaries of social norms and the laws of our community. We will revel in time away from work and its endless tasks. We will sleep late, eat lazy foods, and step out of our regular routines. We will remember the sacrifices of others, my parents included, given in service to our country to protect its freedoms. We will reflect on the courage of our forefathers who risked everything when they signed a piece of paper that severed England’s hold over us and declared war on a king who thought he owned us!

Family Caregivers who are alone in their caring duties don’t often have the freedom to step out of their responsibilities, to take a holiday from their job as a caregiver. If you are fulfilling this critical role for a spouse or an aging loved one you understand the immensity of your daily tasks. If you are dealing with Alzheimer’s disease or another related dementia, your burden is even more significant.

Diseases that affect the memory of someone for whom you care impact both your loved one and you as the caregiver. A condition that leaves your mother like a little child who thinks you are her mother or thinking you a stranger in her home who means her harm can cause feelings of anger, betrayal, hopelessness, and fear of what lies ahead in the disease’s progression.

Forgetfulness related to a form of dementia is also frustrating for your aging loved one. When your father can’t remember where the bathroom is in your home, he may feel anxious or embarrassed. These feelings might make him resist going out in public or coming to visit the grandchildren.

Family Caregivers can become irritable or edgy when forgetful loved ones ask repetitive questions, repeat obsessive gestures or sounds, or resist bathing or changing clothes even when odors would begin to emerge from bodies or clothing in need of a proper washing.

This Independence Day we hope you can take a deep breath and offer your loved ones the freedom to forget. You need to remember that the disease has taken these abilities from those you love; it was never their choice to make, but it is yours. Choose today to embrace forgetting names, places, routines, even basic tasks. Perhaps you could go mining in your loved one’s memories. Ask them to tell you about seeing fireworks shows as a child, or make hotdogs to eat and talk about your favorite memories as a child celebrating the 4th. You might learn things you never knew about your aging parent or spouse. You might even discover a few things about yourself!

We hope you will join our conversation below and share your heart about how you celebrate holidays with your loved one.