We all rely on friends for so many things: social engagement, support during a difficult time, encouragement when we try something new, feedback for new ideas and so much more. You, like so many others, require at least one friendship to feel emotionally happy, connected to caring people, and socially fulfilled. For the last 10 years Friendship Month – highlighting the importance of friends and celebrating what friendship brings to our lives – has been celebrated throughout September.
Friendship Month is something you can acknowledge by spending more time with friends or connecting with people with whom you have lost touch. We’re never too old to make new friends. For the senior or infirm, maintaining, reviving or establishing friendships can be challenging. Fortunately, 21st century tools – Facebook, facetime, skype, texting – can ease the lack of live interaction. Yet, for some, more signs of friendship are necessary, even when not immediately appreciated. The friendship you deliver to the beloved seniors in your life will most likely take new forms of expression; at their stage of life, new priorities take center stage and while they can be difficult, there are ways your friendship will become even more precious.
During the last quarter of the year, we commonly start a planning process on behalf of declared goals; you and your family may want to engage this process for the seniors in your life on behalf of their physical, financial, emotional and mental health as well as helping them shift into many changing situations. Patience will be a strong way to express friendship for the senior whose life is changing so quickly.
Friendship can be expressed through advocacy. Taking on the role of fiduciary, power of attorney, or guardian may come as your loved one’s ability to manage their own care and funds declines. However, much earlier, you may wish to communicate with their physicians, attending appointments when possible. Seniors, older than boomers, have been raised to respect authorities, such as doctors, and may not bring the questions that need to be raised on their behalf:
- Why are they on this medication?
- Are you aware of another doctor’s prescriptions?
- What family member has been describing mom’s changing behaviors?
Sometimes, as a friend to your loved one, you need to make difficult decisions. Being able to determine when forgetfulness has drifted into the beginnings of dementia can be most painful. Or, convincing an older adult s/he is no longer capable of driving or handling their affairs. Added stress to this, making your role as friend even more critical, is when your loved one is resistant to having you take over; it’s a loss of their independence and a huge life change. Here’s a simple way you can assist with their desire to continue participating in their life decisions as you gradually get more involved: place a large bowl where all mail – bills, bank statements, advertisements, reminder notices, etc. – will be collected by the senior. During your visits you’ll review them all for the necessary actions. Be a friend by continuing to respect their need to express their dominion over their own life until they gradually come to see you as a capable partner rather than a bulldozer.
And, even if others have been assigned legal roles for your loved one, they may not have the time to manage some of the day to day needs – shopping, preparing meals, handling laundry – so you might pick up that role as ‘team leader’ among those who’ve stepped up to handle the varied and necessary tasks of a continued life of quality.
Speaking of new roles, as a friend to your senior you may need to decide to bringing in a member of a growing profession, the Aging Life Care Professional or Manager. Often known as Geriatric Professionals, the size of our current aging population has brought this profession to the forefront of care. And, whether minor issue or crisis, this profession is capable to help in a range of needs: it’s a holistic approach that provides answers for worried families, healthcare management, guidance to make choices that will reduce time needed away from working. Often, at an advanced stage of life the senior might have married more than once and has a blended family where priorities and stresses make clear decisions difficult and fraught with conflict. The Aging Life Care Professional is an objective and unemotional voice to help make the difficult choices easier.
Perhaps the most involved form of expressing friendship for your aging parent is when you decide to have them live with you, bringing into your family nucleus a new set of problems and needs which may overwhelm your love for your parent and bring conflict to your own siblings or other involved family. How can you best handle this?
Margaret “Peggy” Graham is an elder law attorney who firmly believes that families should get their agreements about their parent’s care in writing. Typically, family caregivers run into problems because they don’t know what their parent needs now, what they will need down the road, or what their parent or other family caregivers expect them to do.
It is best to have open and honest talks about this, even though it is often an uncomfortable subject. To start, have a transparent meeting where you seek to understand what your parent will actually need, depending on their conditions and cognitive ability. Discuss how your expectations, your parent’s expectations, and other family members’ expectations match up to those needs.
Once you have that understanding, you can start to make a plan that will suit everyone, or at least your parent and the family members who will act as caregivers. Don’t shy away from the financial aspects of this discussion. Talk about if and how the caregiver will be compensated for their time. Then discuss how mom or dad’s money will be managed.
Ideally, getting these details in writing ahead of time will mean that you avoid family conflict, resentment, and financial stress down the line.
Michael Ferraina, CEO of JEV’s Care at Home in Philadelphia advises that families should be patient and take time to get comfortable with one another. Schedules take time to get right, too. He argues that the demands of home care expand as people age. Typically, family caregivers don’t know what they don’t know, which means there are areas of their loved one’s health that they could better support, but recognizing the gap is a challenge. To address this, you should reach out to resources available in your community; examples are:
- Home care agencies: They should be able to answer questions and give referrals to other experts, too. Home care agencies may help you get the right medical equipment, or even help you handle insurance claims.
- Doctor: Your parent’s doctor can help, especially if they are a geriatric doctor.
- Other family: Not only can they provide moral support; family members can step in with unique perspectives to help your parent.
- Medicaid: Through Medicaid there are programs that can help manage your parent’s care.
- Veteran’s Affairs: Veteran benefits include some support for elders in home care.
Before any of this, you obviously must have a conversation with your parent, one that will be extremely difficult. Yet, with the goal of maintaining or expanding your friendship, you’ll need to call on skill: patience, direct language, planned remarks, prepared for a difficult response. Whether it’s about giving up the car, moving from their home, turning their legal and financial affairs over to another, there’s so much underlying emotion here, for you both. You’ll want to express your concern for them, the risks you believe they’re now likely to experience. ‘Ammunition’ that will assist making your case will be observed evidence, doctor’s notes, mistakes in their recent banking, decline in the state of their home or personal appearance. If the most difficult of decisions – to move your parent from her/his home – is what’s necessary, it makes good sense to have that discussion before their decline puts them in a crisis mode; a professional residence with healthcare will be better able to provide ongoing care if they have a history with you and a patient and got to know them in a healthier or more tranquil state.
Friendships come in so many expressions; yours on behalf of a beloved senior as they approach end of life may be the most difficult and most heroic at the same time. There are, as mentioned throughout this article, many resources available for you. Perhaps the easiest way to access them and learn of others, relevant for your situation, will be a phone call to our office.
DECADES: the 40’s
During World War II many seniors came out of retirement to help with the war effort. Their employment income probably kept many of them off the welfare rolls during the war, but they had to retire once again when servicemen returned home and needed jobs. The war also added to the size of the disabled population who needed long term care, and created many new widows and orphans who needed financial assistance. In 1939, the Social Security Act had been expanded to include survivors and dependents benefits, and the war greatly increased the number of people covered under the system. After the war, the Veterans Administration added new benefits for newly-disabled veterans or surviving spouses.
The size of the elderly and disabled population was growing, and many of them were now eligible for government payments of one kind or another, including veterans benefits, old-age assistance, Social Security, and unemployment assistance. Many of those payments could be used to pay for nursing home care, further encouraging the development of care facilities. In fact, Old Age Assistance benefits doubled to over $400/month by 1947.
Catherine F. Rowlands, MBA, NHA, CMC, FL-RG, MT
Sue Fernandez, Community Educator for the Alzheimer’s Association
Liz Barlowe, MA, CMC, former president, the Board of the Aging Life Care Ass’n
Michael Ferraina, CEO JEV’s Care at Home
Margaret Gram, elder law attorney
Library of Congress
Journal of Gerontology
Aging Life Network podcast
In 1988 then President Ronald Reagan, himself a senior, signed Proclamation 5847 marking August 21 as National Senior Citizens Day. The largest slice of the American population – nearly 72 million boomers – are nearly all senior citizens, pursuing a variety of endeavors (the youngest boomer will become a senior citizen in 2024). And, as has been typical throughout their recognition as a unique generation, boomers continue to shift expectations and norms.
For example: 55% stated that they are willing to work longer hours than other generations and are considered the second most productive generation after Gen X. Because, while 10,000 boomers are turning 65 daily, that same number is not retiring daily. In an AARP survey, 40% planned to ‘work until I drop.” Those who continue to work – both women and men – tend to be college educated, non-Hispanic white and living in a metropolitan area. This has increased overall economic growth in the U.S. as well as increased retirement income for the longer employed boomer.
And, of course, the Covid pandemic has shifted boomers’ spending and priorities; cruises, typically popular among seniors, are off many lists due to the frightening reality of Covid-related deaths reported in ships’ crowded environments. And time with family, completely shut down in 2020, has now become a greater priority, likely having an impact on retirement relocations.
Another Covid impact has been the horrifying vision of nursing home and hospital deaths, without access to loved ones in last moments. As a result, aging at home has taken on new significance. This will be a boon to the already fast-growing Care Management profession, as more healthcare needs will be met by visiting professionals rather than a relocation to assisted living or nursing home locations.
Boomers, along with the fastest growing group of seniors in the 90+ category, will need services that address aging at home. For example, in addition to your yard guy, housekeeper and handyman, you will now need to plan for someone to drive you places, cook for you, remind you to take your medications and help you get in and out of your tub. For many, these costs will be more than the monthly income they worked so hard to create when doing their retirement planning.
Yet, very significantly, in the U.S., where 80% of the wealth is owned by boomers, this population continues to increase its value to the economy, not only by continuing to work beyond 65, but also by using its stored wealth to spend. And, that spending, plus Covid isolation, has increased seniors’ use of technology which, in itself, increases cognitive skills, staving off some of the traditional memory or thinking losses associated with old age.
Moreover, the boomers’ well-known preference for independence led to a huge growth in business ownership, interest in self-actualization, prosperity, change and a clear orientation towards goal achievement.
Yet, not all seniors are in this vaunted category. Many boomers rely entirely on their Social Security benefit to support them. And the prevalence of obesity among this generation has increased their rates of chronic diseases such as hypertension, high cholesterol and diabetes. This leads to limitations of daily living – bathing, eating, dressing, walking – again, as noted above, leading to a greater need for in-home care.
Ironically, about 20% of boomers, themselves facing greater concerns for healthcare, are also providing healthcare for their aging parents for whom isolation becomes a large issue; this sad aspect to life has been tragically showcased through the many lonely deaths in hospitals and nursing homes resulting from Covid. Yet, even without the severity of the pandemic, boomers who are care givers put additional strains on their health as the relationship of parent/child begins to shift when the child becomes the authority over the parent, often an unwilling partner to this severe change in their life.
And perhaps most insidiously, according to Forbes, $2.9 billion is taken from seniors in scams yearly. Though you may think of your parent (or yourself) as a wise and skeptical person, aging tends to dull everyone’s ability to protect themselves from fraud. We become more trusting and rely on those around us more. This is why it’s smart to take steps to protect your parent or loved one before they fall victim to financial abuse. And frankly, this list may be a guide for yourself; please – don’t be embarrassed by taking advantage of healthy, smart support. Here are ten things you can do and, if you believe any or all of these are necessary or beyond your skill set to maintain, consider enacting a power of attorney with a trusted associate, advisor or family member:
Keep an Eye on Accounts
You may have to switch your parent to online banking to keep a close eye on their bank account, but it’s worth the fuss. Most elderly people have predictable spending habits, so you can spot problems right away. This will also be a great convenience for you with continued Covid concerns. Speak with your account manager about protections your bank has put in place.
Only share access to your or your senior’s account with the most trustworthy family members and not those who have borrowed money from the senior before or who are having financial difficulties. There are third party companies, like EverSafe and the American Association of Daily Money Managers that can help you keep an eye on your parent.
Know What to Look For
When you’re monitoring your parent’s bank account, what should you look for? Sudden payments or withdrawals to places you don’t recognize are most common. Also look for:
- ATM withdrawals
- Other cash withdrawals
- Check purchases
- New accounts
- Unusual savings withdrawals
- Doubled payments
- New people authorized on the account
Put the Checkbook Away
These days everything can be paid with a credit card or through e-transfer, even rent. Checks are more dangerous because there’s no safe guard for fraud. If your parent pays into a scam with their credit card, you can usually recuperate this money. With checks or a debit card, you’re out of luck. It may be wise to lock up your parent’s other payment methods in a safe, and have him or her use them only when you’re around.
Choose Care givers Carefully
While there are online and telephone scams, 34 percent of elder abuse is actually committed by someone close to the senior. This may include family, caregivers, friends, or neighbors. Appalling to consider yet necessary to acknowledge.
In order to prevent caregiver fraud, ensure that you’ve hired a caregiver from a reputable agency. You may set up a nanny cam or other recording equipment if you suspect abuse – financial, physical or emotional. Be sure that you’re the one paying the caregiver directly and not your parent, so that the caregiver is less likely to demand fraudulent second payment for their “services” from your parent.
Watch New Friends and Relatives
Elders may trust new people in their life too quickly, sometimes lending them money or making them an authority on their accounts. Elders can be manipulated into situations that don’t make sense, like opening up new accounts or taking out loans, to help these “friends.” Keep an eye on any new friends or even recently renewed acquaintances with family members.
Avoid In-Person Scams
Ask your parent to alert you if someone comes by their house unexpectedly. Often scammers pretend to be financial advisers, contractors doing repairs, or landscapers. They offer home services or financial advice but actually target and steal from the elderly. A front door security camera like Nest can help you keep track of unusual visitors to your parent’s home.
Educate Your Parent
If your parent still has a strong memory and understanding of tech enough that you can introduce them to new types of scams committed through technology, you should. Focus especially on scams that target the elderly. While you can’t expect this knowledge to be their only safeguard from financial abuse, it may help them avoid the most serious scams.
Get Regular Credit Reports
Even if you have access to your parent’s account you may miss things. Getting a credit report on them once every few months will ensure you don’t miss it if they open a new credit card or take on some kind of loan, which they could then use to participate in a scam. Frankly, this is good advice for anyone!
Let Your Parent Know You’re There for Them
Elders are less likely to take action against the criminal even when they know they’ve been scammed. Perhaps it increases their fear that they are becoming too dependent on others or they’re embarrassed about being duped. If your parent knows that you’re there to help, and won’t think less of them for falling prey to a scam, they may be more likely to reach out for help if they think they’ve been scammed.
Report Suspected Abuse
If you suspect that your parent has been scammed, it is wise to report the person to the police, or to speak with them directly about it (if they are a friend or family member) right away. Elderly people may be surprisingly trusting and can fall for the same scam twice. Plus, by reporting the scam, you can protect more vulnerable elders like your parent and prevent more financial abuse from happening to others.
Any one of these circumstances is an indicator that a higher level of support is needed, and, the best time to enact it is before they crop up. Power of attorney conferred on a trusted relative or associate is a strong, protective legal instrument to put in place.
By the 1950’s a consensus was building that facilities for the aged should focus on providing medical care, as well as residential care, and legislators decided to actively promote the development of skilled nursing homes. In 1954 the Hill-Burton Act was amended to provide funds to nonprofit organizations for the construction of skilled nursing facilities that met certain hospital-like building standards, if built “in conjunction with a hospital”.
The Hill-Burton amendments created a number of precedents. The changes represented the first time that legislation specifically included nursing homes as part of the health care system rather than the welfare system, and created an expectation that the physical design of nursing homes would be based on hospital design. The Hill-Burton regulations placed nursing homes under the jurisdiction of the National Health Service, ensuring that future regulatory oversight would be medical in nature, and they represented the first time that federal funding for nursing homes was tied to standards for construction and design, staffing patterns, and other medically-oriented concepts.
All throughout July I hear fireworks, see red, white and blue and hear advertisements that feature ‘Independence’ as a theme. For many in the aging life community – practitioner, protector, senior adult and concerned child – ‘independence’ is a challenging concept. Diminishing skills tend to take seniors’ independence while the senior adult fights against its loss.
Perhaps no sign of a change in a senior’s independence causes more upset than moving – or actually, being moved – from one’s home to a care facility, a combination room or apartment with a professional care staff that takes over responsibility for a senior’s life. According to AARP research, nearly 90% of seniors want to stay in their home. Often referred to as “aging in place,” this option can be possible depending on the senior’s need for care and their financial resources.
If aging in place is a real option, a strong financial plan is necessary. For example, it’s important to explore all benefits that might be available, both at the state and federal level. Veteran’s Administration aid is often overlooked yet typically provides benefits for both veterans and their surviving spouses. National programs like PACE (Program for All-inclusive Care for the Elderly) help people stay out of nursing home care and, if the senior can’t age in place, they can help find a Medicaid-covered group home with several other seniors living in a familiar, home-like setting.
Another option is to investigate any existing long-term care insurance policies. While older policies may imply they cover nursing homes only, it is worth having someone contact the insurer and advocate for home health care, a much less expensive option unless the senior needs round-the-clock care. Insurance often include an opportunity to approve payment for several hours of in-home care per day vs. the expense of a nursing home facility.
There are also life insurance companies that will help cash out the face value of a life insurance policy to pay for care. Reverse mortgages can also be helpful if your loved senior is committed to staying at home.
As far as the safety of aging in place, technical advances in equipment help people keep their independence. For example, you’ve most likely seen TV advertisements for Life Alert; it is motion-sensitive and automatically sends its alert if there is a fall. And, a bath tub can become a low-entry shower to make bathing safer. Bed alarms and mats are available to place next to the bed, sending an alert if there is the appearance of wandering. And there are devices at this link which you can install on the stove burners to ensure they shut-off automatically, preventing fires if your mother forgets to turn them off.
You can install safety features like grab bars and non-slip mats in the bathroom and sturdier handrails on the stairs. You and your parent may feel more comfortable with her/him at home alone for a longer period of time with safety gadgets like these.
Through Medicare, an Occupational Therapist or Care Manager can come to the home and review all safety hazards. This way you can know exactly what changes are necessary to create a safer environment.
From the standpoint of maintaining personal pride for the senior who’s capable of staying home with some supportive family or the occasional visiting professional, let mom be part of scheduling or writing her checks, going over the mail, or creating shopping lists. The person who often takes the lead on these tasks is the Power Of Attorney. Perhaps there other people – a neighbor, frequently seen handy man, friend – who can influence mom’s behaviors, keeping her on track to maintain healthy habits?
Engaged family can take advantage of gerontologists, social workers, and the previously mentioned Care Manager to facilitate needs and perhaps divide up roles among those in the senior’s life who are able (or paid) to step up. For example, use others to maintain your senior’s health: keep her/him off ladders, let someone take garbage to the curb, walk the dog, move oft-used items from high shelves; the goal here is to prevent falls and accidents.
If you can afford to have someone come in to help your mother once a week then do it! Their help can go a long way to keeping your senior independent and in her own home. For example, a weekly housekeeping visit can do the tasks your mother may find exhausting or forget to do, which will keep her from overexerting or hurting herself. Weekly visits from a physiotherapist may help keep your mother physically capable.
Often the first step to keep your independent senior at home is to help mom/dad age well with a plan. Part of this is simply talking about the process of aging, something we don’t typically do before the parent loses her authority role and child becomes care giver. Have the conversation with your parent – what do you want to happen and when? Home care? Assisted living?
Another form of protection to hold onto independence is to put mom’s money in a trust, preventing the tragedy of sophisticated scammers who find so many ways to prey on someone’s fears or sympathies.
Use this link on our sister site, Aging Life Network, to find a tremendous range of resources to assist, using the values that are critical to your aging parent and family. The sooner these conversations happen, the easier the shift and ongoing care will be.
While the solutions above will lessen the sting, or even the need, for drastic changes in the life of your beloved senior, the time may come when more serious changes are needed. Yet, more than the loss of independence, much more is at play in their mind, preventing easy acquiescence with your best intentions: pride, role reversal, depression, guilt over the memory of how they were forced to care for their parents are all swirling around their brain, along with the loss of authority, credibility and autonomy I mentioned initially.
The role of guardian ad litem may represent the best interest of the senior who fears all of the above. How to determine if the time has come? Medical records, doctor’s notes, the potential risks to the senior if no intervention is taken must all be considered. Too often, by the time the guardian is called in, a desperate situation exists: rotting food, empty pill boxes, dishes piled high, no clean laundry are all signs of a need for immediate intervention.
And, when likely resistance shows up, it’s important to distinguish: is the senior simply stubborn, cognitively impaired, or under undue influence by an acquaintance?
In some cases, engagement with former hobbies or life enrichment programs can help. A strong tool is art therapy. Shown to be a powerful tool, art therapy can help your aging parent reconnect with the world. Painting, drawing, sculpting, paper crafts, writing, poetry, music, and even dance can all be part of an art therapy program. There are many reasons to design some art therapy for your parent, or to encourage them to participate in art therapy offered by their retirement community, if, in fact, that’s where they land.
Art therapy has a variety of cognitive and emotional benefits including slowing of memory loss, combating boredom, loneliness and depression, increasing self-esteem and even having physical benefits. Art forges new neural pathways in the brain and strengthens existing connections. Calling on past events to create art improves memory. Using a variety of colors, materials and textures increases sensory stimulation and using art to convey religious beliefs can reduce depression and anxiety. And, of course, when creativity is shared with others it increases social interaction, personal expression and relaxation.
Overall, art therapy is a powerful tool to keep your parent engaged with those around them and with their own story and experiences. There are art therapists who can help you develop a program suited to your parent. Alternatively, you can find many ideas online about art therapy.
What happens if your parent has been diagnosed with mild dementia? Is it safe to leave her/him at home? People with mild dementia usually do well if they are in a stable environment they’ve lived in for a long time, especially when they maintain their established routine. When they forget things, a system of reminders can help them stay on track. For example, if you’re worried because your mother is struggling to recall your number when she wants to call you, writing it out on a sticky note and leaving it next to her telephone can solve the issue.
However, if dad can’t recall emergency numbers when he needs to, that’s more serious. The emergency number in his area has likely been the same his whole life, so forgetting it is also a sign of growing memory issues. Leaving the number on a note pad on the fridge can be helpful, but it is still a sign dad shouldn’t be living alone.
Other ways to extend senior independence? Reminders can be set-up to help navigate day-to-day tasks. You can set up reminders to pay bills with her bank, or add them to her monthly calendar. If your mother can use a cellphone you can program reminders for anything she needs, including reminders to eat dinner or to take her medication.
It’s a must to check-in on your dad regularly, as you never know when dementia may become too serious for him to be alone. It can also help your dad maintain his routine if you or another family member call on a set schedule. For example, if you find your dad is forgetting to lock doors at night you can call every evening at around the same time to prompt him to do so.
Eventually, some incidents will remind you it’s time to re-evaluate your parent’s situation. Falling, getting lost, leaving the house at night, and giving money away are all serious indications that your senior may not be safe to remain at home alone.
If you feel that despite all these support tools your senior would be best served with a guardian, please reach out to me directly for the best and healthiest way to proceed.
Celebrating Decades: the 20 teens
In October of 2017, bipartisan legislation was passed by Congress and signed by President Trump to protect seniors from financial exploitation.
The Court-Appointed Guardian Accountability and Senior Protection Act passed Congress as part of the Elder Abuse Prevention and Prosecution Act. The legislation, authored by U.S. Senators John Cornyn, R-Texas and Amy Klobuchar, D-Minnesota, strengthens accountability and oversight for guardians and conservators.
Under the new law, state courts may apply for funding from an existing program created to protect older individuals, and use the funding to assess the way the courts handle proceedings related to guardians and conservators, so that improvements can be made. Examples of potential improvements include electronic filing systems to keep tabs on guardianships and conservatorships, and the institution of background checks for guardians and conservators.
National Council on Disability
Aging Life Network
American Association for Retired Professionals
attorney Cristy Carbon-Gaul
The needs of an aging LGBTQ population is a topic that is so often not discussed yet the unique risks endured by these diverse Americans – depression, poverty, isolation, fear of authenticity, less willingness to approach institutional resources – make it an important one. One of the unique challenges is that the LGBTQ population is very much aging single; more likely to be single, without children, dependent on friends for care giving needs who, themselves, are aging at the same rate.
When older adults need care, they typically turn to a child, spouse, or other relative for assistance. LGBTQ older adults are 4 times less likely to have children and twice as likely to be single as their non-LGBTQ peers. They may also be estranged from their biological or legal family members if those people do not accept their sexual orientation and/or gender identity.
And, all the while, this diverse population has endured institutionalized discrimination and ignorance, smaller communities than the hetero-normalized adults, and fearing persecution. In 1973 the American Psychiatric Association removed homosexuality as a mental disorder and it was only very recently, in 2019, that the World Health Organization no longer classified transgender identity as a mental health issue.
So, we have LGBTQ individuals who’ve lived the vast majority of their lives in isolation, fear, legalized persecution; stigmas that have transferred to today and have created a great deal of difficulty as they age.
Some fear their connections to their family of origin; their careers, finances, and opportunity to save for retirement are likely to be less secure. And because of all the stigma of the past, thinking or being treated as ill, members of this population fear government agencies, healthcare providers and the likelihood of less than relevant treatment they’ll experience when they do reach out to available services. This can lead to a delay in care, premature institutionalization, and even premature death
The result is vastly higher risks for illness and many older LGBTQ are concerned about their healthcare and access to resources as they age; here are some alarming statistics:
- Forty percent of LGBTQ adults in their 60s and 70s, as well as 43% of single, older LGBTQ individualsaged 45 to 75 years, state that their healthcare providers are not aware of their sexual orientations.
- 65% of transgender adults aged 45 to 75 years believe that there will be limited access to healthcare as they grow older.
- In a different survey of LGBTQ adults aged 50 to 95 years, 21% reported not disclosing their sexual or gender identity to their physicians
As providers and as members of a society that’s aging overall, we need to understand these obstacles, the history of a lifetime. As a result, LGBTQ individuals, who largely go into their senior years as single adults, are at higher risk for physical and mental health challenges – depression, anxiety, poverty, poor coping skills, while, at the same time, they fear accessing the resources and established systems that could mitigate these severe problems.
And it’s obvious why: History of prejudice has led to high levels of LGBTQ distrust for mental and physical health providers, social services, meal services. And, if they have to access these services, they fear expressing their needs, culture and personal history, thus living inauthentic lives with declining abilities and resources when they’re needed most.
We should all have the confidence to know we can access available resources with dignity yet to age as an LGBTQ individual is typically to deny this sense of entitlement after a lifetime of contributing to society. The result is a unique burden on this population and, in fact, a larger burden on an overall aging American society to find ways to address it.
Younger LGBTQ people are less cautious and benefit from changing laws and acceptability in growing swaths of the population. Yet, those who lived through the 1950’s- 70’s with violence and tremendous trauma found their careers were stunted, they were shunned. In fact, as I pointed out above, a large percentage have never shared their gay identity with their doctors and this alone diminishes some relevant aspect of their health care.
It’s hard for younger people who’ve seen an opening in acceptance and equality to understand the life experience of older LGBTQ Americans. And, for an aging population we need to change the focus in care communities and facilities to incorporate gender and preference inclusivity. We need to acknowledge the status of partners and caregivers of choice who may not have the traditional legal status to make choices on behalf of their companions and friends.
As a professional member of the health or caring communities, if you have not yet worked with older LGBT communities, it is recommended that you implement some best practices to make your agency generally welcoming to LGBT older adults before you move on to specific programs.
- Improve your organization’s knowledge of LGBTQ issues
- Consider going through formalized LGBTQ cultural competency training in order to best understand the history, language, and social and political context of the community.
- If your organization could use a refresher, if you have never had a formal LGBTQ cultural competency training, or if you would like to learn more specifically about LGBTQ aging, request a visit the National Resource Center on LGBTQ Aging to find resources.
- Promote inclusivity in your hiring and training policies.
On the other side of the aging population, LGBTQ caregivers make up 9% of the 34.2 million Americans caring for adults over age 50. Interestingly, LGBTQ people also become caregivers at a slightly higher rate than their non-LGBTQ peers: 1 in 5 LGBTQ people is providing care for another adult, compared to 1 in 6 non-LGBTQ people.
LGBTQ caregivers come from a variety of different backgrounds and provide care in a variety of different relationship structures, but there are some common themes in the unique needs and experiences of most LGBTQ caregivers, as well as those who are caring for LGBTQ older adults but may not be LGBTQ-identified themselves.
LGBTQ older adults, caregivers themselves, are more likely to be caring for one another in isolation, without other people involved to share the burden. Only about half of all caregivers have another unpaid caregiver to help them, and about 2/3 of family of choice caregivers, many of whom identify as LGBTQ, provide sole care (43%) or are the primary caregiver (25%). Having just one caregiver means that the person receiving care lacks a safety net, and that the caregiver is likely to experience an increased burden, both of which could ultimately jeopardize the care recipient’s ability to age in place.
For many LGBTQ people, families of choice are the cornerstones of caregiving. These chosen families provide social, emotional and physical support, and often serve as advocates when medical needs arise. However, most families of choice are not afforded any legal recognition or protection, and service providers may not think to inquire about or include these people in their work. It is important to recognize these relationships, and to provide support in completing paperwork that ensures the wishes of the care recipient are recognized.
As you can see, special circumstances and historical discrimination have placed enormous burdens on the LGBTQ population that will continue through old age. Here are a sampling of legal aids to utilize; Decades Group can assist you with all.
The CARE Act:
In 40 states plus the District of Columbia Puerto Rico and the U.S. Virgin Islands, some version of the Caregiver Advice, Record and Enable Act is in effect. While varying from state to state, its basic premise is that hospitals are required to ask patients at admission whether they’d like to designate a caregiver.
Once named, regardless of that person’s relationship to the patient, the hospital is general required to record the name of that caregiver in medical records, inform the chosen caregiver when the patient is being discharged and give the caregiver adequate training on how to perform any medical tasks needed at home.
For our topic, it’s important to note that the Act makes no stipulations about who may be named as the caregiver – relative, friend, chosen family, etc – and the hospital must formally recognize that person as the caregiver. This link to AARP will take you to a wallet card you may wish to have with details of the Act in those states/territories where it’s been enacted.
Advance directives allow an individual to ensure their wishes will be honored should they become unable to communicate or make decisions for themselves. While relevant for all adults, these are particularly important for people whose caregivers or closest loved ones are not legal relatives, often the case for LGBTQ people.
The following documents are recommended for anyone for whom their primary caregiver is not their legal next of kin (see more at Lambda Legal’s ‘Take the Power’ toolkit). Of course, Decades Group will assist and guide you with any and all these important documents:
- Medical Power of Attorney (or Health Care Proxy)
- Living Will
- Hospital Visitation Directive
- HIPAA Waiver
- Financial Power of Attorney
- Written documentation of an individual’s wishes upon their death, i.e. funeral arrangements, disposition of remains, organ/tissue donation, obituary, etc.
Is it possible the current aging LGBTQ population will begin to shift attitudes and awareness when their chosen families can no longer act as care givers? Will their presence in typically hetero-normalized care facilities open awareness and attitudes? Awareness, acceptance and appropriate responsiveness to diverse populations with varied histories, cultures and needs can only serve to improve care for us all.
For more information about any of the varied forms of legal protections mentioned here, we welcome your call, no obligation is implied:
Celebrating Decades: The 70’s
June became Gay Pride Month after the Stonewall Riots, a series of violent confrontations between police and gay patrons of the Stonewall Inn on June 28, 1969. This began to build cohesive communities of LGBT New Yorkers, leading to similar organizations around the U.S.A. and the world. In June the following year, a first march for gay rights covered 51 blocks of New York City and, within 2 years, gay rights groups existed in every major American city as well as Canada, Australia and Western Europe. Throughout the ‘70’s gay activism had significant successes including the American Psychiatric Ass’n. invitation to activists to speak at the 1972 conference and the deletion of homosexuality as an illness by that group in 1973.
Celebrating 2 Decades of Service in the New Mexico Community
Karen McPhail, BSN, MSN, CDP, Aging Life Network Podcast w/Nancy Oriola
Daniel B. Stewart, MSG and Alex Kent, MPA, “A Guide to Engaging and Supporting LGBT Caregivers through Programming”
Aliza R. Grossberg and George T. Grossberg, MD, “Aging LGBTQ Patients and Barriers to Care”
Jesus Ramirez-Valles, “Queer Aging”
It’s shocking but true: more than half the reports of elder abuse or neglect that were investigated (most recently in 2018) stem from self-neglect as reported by the Department of Health and Human Services. That’s more than the next most numerous categories— financial exploitation, emotional abuse, physical abuse and sexual abuse—combined. Self neglect can be one of the saddest circumstances that call for emergency guardianship of an elderly parent.
Surprisingly, the concept of guardianship dates back to ancient Greece and Rome yet, to this day, remains uneven in its implementation. And, while guardianship can be applied on behalf of people of any age, when it comes to guardianship of an elderly person, especially emergency guardianship of an elderly parent, a court decision may intervene. This can happen should family conflicts preclude you, as the adult child, taking on that role.
So, what is guardianship and how does it differ from other legal relationships that are designed to provide care for an elderly parent unable to provide it for her/himself? It’s often seen as a last resort option, resulting from a court hearing that confirms a medical opinion of incapacity of the elderly parent.
In New Mexico, guardianship deals with a person: their mental or physical health, nutrition, religion, education. In an emergency guardianship of a parent, it’s often recognized as a need during a holiday when adult children have arrived to discover all is in disarray – mail piled up, rotting food in the refrigerator, dirty dishes strewn about and all is just a mess. Sadly, this is not a unique situation but, in fact, quite common. The kids will then approach an elder care attorney who, when approaching the court system, will appeal for guardian ad litem who then begins an investigation into the parent’s state of mind or ability to care for her/himself.
The goal is to determine what is best for that parent’s continued health and ability to manage their living needs; a doctor, guardian, social worker will assess capacity. Essentially, the decision rests on this: the parent is in dire emergency straits and, unless something is done immediately, is vulnerable to injury or death.
And, ironically, while this position exists to avoid what could be tragic results, its implementation can be tragic as well in its upset and cost. To minimize adding additional upset, especially when deciding to implement emergency guardianship of an elderly parent, consider these steps:
- Consider your own future needs when you may rely on others for care; planning can ensure that you’ll have a say in who will look after you if you ever need help.
- Make peace with your loved ones. Judges often appoint professional guardians, so try to effect peace before problems escalate. Whatever the cost, it will likely be cheaper than a professional guardian. And, despite the feuding that may be in place now, your goal is for peace among loved ones in future, when you may depend upon them for your continued health.
- Create one durable power of attorney for finances and another for medical care. One person can fill both roles, and you can also name your POA designee as your guardian of choice.
- Do you know in advance who you’d like to fill this critical role? Explain to your designee how to do the job; some good insight, especially when someone else will handle your funds, can be found here.
- And, be prudent – create checks and balances by requiring your appointee to provide a periodic accounting to another trusted friend or relative.
So, to be clear: with full guardianship of an elderly parent, a judge transfers the individual’s civil rights — including the right to sign contracts, make medical decisions, and choose with whom to associate and where to live — to the guardian. And, while the vast majority of guardianships maintain a conscientious relationship and responsibility to their clients, there are disasters that lead to fraud, embezzlement and conspiracy with an audience sadly vulnerable to this unscrupulous behavior.
When it’s time to place mom or dad under the care of a guardian, emergency or otherwise, here are the steps you’ll need to take:
1. Obtain a Physician’s Certificate or Doctor’s Letter
If you have a parent who you think needs emergency guardianship, you must obtain a physician’s certificate or letter. This form is a document that attests to the patient’s mental acuity and physical ability. Before that step, you might need to assess your parent given clues found throughout their home; you can learn more about this here.
2. File the Application for Guardianship
Filing the application in a probate court for guardianship is a pretty standard procedure. If the elderly person has refused medical examination you can always ask the court to order one later. The court will undertake guardianship proceedings to determine whether you are fit to be guardian.
3. Give Notice to the Proposed Ward & Relatives
When you file the application for guardianship you will also notify the proposed ward of the application, as well as any family members or others with the legal right to know about the petition of guardianship. You can see why it’s important to make peace with family long before this emergency need arises.
4. Seek Least Restrictive Alternative to Guardianship
Are there alternatives that are less burdensome than a guardianship? One of them, Power of Attorney, is fully discussed in our free report; you’ll find it here on our home page.
If you have evaluated alternatives and have found them to not be feasible then it may very well be that guardianship is the best solution for your loved one.
5. Attorney Ad Litem / Guardian Ad Litem
If you file for guardianship, no matter what, the court has to appoint an attorney to represent your loved one, the proposed ward. This is the Attorney Ad Litem. Their job is to do what the proposed ward, their client, wants.
If the court, or the attorney ad litem, believes more investigation is necessary, a Guardian Ad Litem may also be appointed. This person is not the guardian but is a court-appointed person who acts as the court’s eyes and ears. They are involved in the process and their job is to determine and make recommendations on what is in the ward’s best interest.
The decision to wrest complete control from the person who’s had such a controlling influence over your own life can be wrenching. When it’s not planned and is, instead, an emergency guardianship of your aging parent, it’s life changing. And then, it can become worse when conflicting interests – personal, medical or legal – feel compelled to do battle with you. It’s costly both in terms of money and state of mind for all parties which, ironically, can degrade the ability to make good choices on behalf of the aging parent whose decline was the impetus for this changing scenario.
As a long-time professional guardian, I’m one of fewer than 100 Certified Master Guardians in the United States. I welcome your call; no obligation is implied:
Celebrating Decades: The 80’s
The first guardianship symposium was held in 1988, leading to the National Guardianship Network. Professionals who recognized the problems of aging adults, unable to properly make decisions or care for themselves, combined with a huge boomer population destined to become elderly, led to this historic event. Over time, the Network has tackled standards, reform and federal responsibilities to an aging population. To learn more, click here. If you wish to explore this role, either for yourself or a loved one, please connect with me, either at the phone numbers above or here.
National Guardianship Network, Aging Life Network podcast
For more than 12 years, Decades has provided trusted professional guardianship and conservatorship services. A conservatorship is established by the courts with a conservator appointed to manage and protect the financial interests of an individual, determined by the court to lack the capacity to make their own financial decisions. Incapacitated individuals who did not previously establish a Durable Power of Attorney may require conservatorship. One such form of incapacity can arise from extreme cases of Parkinson’s Disease.
When actor Michael J. Fox developed Parkinson’s disease, it threw a spotlight on this neurodegenerative disorder. And, since 1983, April is the month when awareness about it is especially high, geared towards education, care and fundraising.
I say ‘education and care’ because, despite significant research, there is no cure. Treatment options vary and include medications and surgery. And, while Parkinson’s itself is not fatal, disease complications can be serious. As I wrote above, its impact goes beyond motor functions, possibly into mental impairment, leading to the need for a conservatorship protecting the financial assets of the affected individual. And, beyond that, complications from PD is the 14th cause of death in the United States (according to the Centers for Disease Control).
The progression of symptoms differs from one person to another and can slowly develop over years. People with PD may experience:
• Tremor, mainly at rest and described as ‘pill rolling’ tremor in hands.
• Bradykinesia – slow movement
• Limb rigidity
• Gait and balance problems
As with many things, the first step to living well with Parkinson’s
Disease is to understand it and its progression. In fact, it is possible to have a good to great quality of life with PD. Working with your doctor and following recommended therapies are essential to successfully treat symptoms, using dopaminergic medications (meant to increase levels of dopamine in the brain). People with PD need this medication because they have low levels or are missing dopamine in the brain.
Ironically, while we often associate Parkinson’s with obvious tremors and changes in movement, these symptoms are ‘late bloomers’, showing up long after the disease has taken hold in the brain. For that reason, scientists are exploring ways to identify biomarkers for PD that can lead to earlier diagnosis and more tailored treatments, thus slowing down the disease’s progression. Currently, all therapies used for PD improve its symptoms without slowing or halting the disease itself.
So, how can you tell if you or a loved one has Parkinson’s disease before it has advanced to a life-altering stage?
Below are 10 signs that you might have the disease. No single one of these means that you should worry, but if you have more than one sign you should consider making an appointment to talk to your doctor.
Have you noticed a slight shaking or tremor in your finger, thumb, hand or chin? A tremor while at rest is a common early sign of Parkinson’s disease.
Has your handwriting gotten much smaller than it was in the past? You may notice the way you write words on a page has changed, such as letter sizes are smaller and the words are crowded together. A change in handwriting may be a sign of Parkinson’s disease.
Loss of Smell
Have you noticed you no longer smell certain foods very well? If you seem to have more trouble smelling foods like bananas, dill pickles or licorice, you should ask your doctor about Parkinson’s.
Do you thrash around in bed or act out dreams when you are deeply asleep? Sometimes, your spouse will notice or will want to move to another bed. Sudden movements during sleep may be a sign of Parkinson’s disease.
Trouble Moving or Walking
Do you feel stiff in your body, arms or legs? Have others noticed that your arms don’t swing like they used to when you walk? Sometimes stiffness goes away as you move. If it does not, it can be a sign of Parkinson’s disease. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem “stuck to the floor.”
Do you have trouble moving your bowels without straining every day? Straining to move your bowels can be an early sign of Parkinson’s disease and you should talk to your doctor.
A Soft or Low Voice
Have other people told you that your voice is very soft or that you sound hoarse? Sometimes you might think other people are losing their hearing, when really you are speaking more softly.
Have you been told that you have a serious, depressed or mad look on your face, even when you are not in a bad mood? This is often called facial masking.
Dizziness or Fainting
Do you notice that you often feel dizzy when you stand up out of a chair? Feeling dizzy or fainting can be a sign of low blood pressure and can be linked to Parkinson’s disease (PD).
Stooping or Hunching Over
you not standing up as straight as you used to? If you or your family or friends notice that you seem to be stooping, leaning or slouching when you stand, it could be a sign of Parkinson’s disease (PD).
And, while all these symptoms relate to physical appearance and behaviors, Parkinson’s poses the chance of cognitive decline as well.
When an adult fails to do his or her estate planning and then later becomes incapacitated, as can happen with Parkinson’s Disease, it may be necessary for the court to step in and place the adult under the care of another. This is called a guardianship. If the adult has financial assets, a conservatorship may also be needed. Conservators are assigned by the court to oversee the financial assets of an adult who can no longer manage those assets. The role of guardian and conservator can be served by the same person or separate individuals as appropriate.
Of course, incapacity often occurs from cognitive decline through dementia – perhaps Alzheimer’s or Parkinson’s disease – but can also be a result of trauma, mental illness, and disease, most frequent of which is stroke.
A court determines if an adult is incapacitated by considering whether the adult is capable of effectively receiving and evaluating information about her/his health, well-being, and finances. Any physical or mental decline that results in the adult being unable to provide for his or her own health, safety, and medical and financial needs may give rise to a guardianship and conservatorship. These terms are sometimes used interchangeably yet can also be defined for a single aspect of living, such as conservatorship of the person or conservatorship of the estate.
It is important to note that with advance proper planning, including the execution of a properly drafted advance medical directive (also known as a living will) and a durable power of attorney, a guardianship (and conservatorship) can almost always be avoided.
For more information about any of the varied forms of legal protections mentioned here, we welcome your call, no obligation is implied:
Celebrating Decades: The 60’s
Is it ironic that the Older Americans Act, part of President Johnson’s Great Society reforms, was passed in the 60’s on behalf of Americans in their 60’s? Re-authorized in 2020, it includes provisions for social and nutritional support through nearly 60 state agencies and 20,000 service providers. If you or a loved one seeks support with any needs related to aging, you can learn more here. And, of course, don’t hesitate to reach out to us at Decades Group for any healthcare or financial decisions associated with aging.
Celebrating 2 Decades of Service in the New Mexico Community:
The Parkinson’s Foundation
Administration for Community Living
American Parkinson Disease Association
Michael J. Fox Foundation