For millions of baby boomers about to turn 65 and begin utilizing their Medicare benefits, the battle of finding a physician who accepts the government-run health care plan may be just beginning.
With ‘Obamacare’ politics having significantly affected Medicare, some physicians are refusing to accept or are significantly limiting the number of new Medicare patients. According to the Centers for Medicare and Medicaid Services (CMS), physicians may be facing a near 30% reduction in Medicare reimbursement. The reduction is based upon the Standard Growth Rate, a formula based upon the Gross National Product.
Limiting and Denying Basic Care
The idea of slashing Medicare reimbursement is not new. Physicians have been fighting a losing battle for the last several years, knowing that inevitably they would feel the heat. In fact, in 2010 they were given a reprieve from the cuts when Congress delayed the cuts until this year. It’s not just the physicians who will be feeling the burden from the cuts. Many of their patients who qualify for Medicare benefits will also be feeling the pain.
According to a 2010 article published in USA TODAY, primary care physicians have been restricting or limiting their acceptance of Medicare. In separate surveys The American Academy of Family Physicians and The American Osteopathic Association saw a significant number of physicians, 13% and 15% respectively, not participating in Medicare. In addition, the American Medical Association says that 31% of surveyed primary care physicians are restricting the number of Medicare patients in their practices.
While many believe these cuts will affect society’s most vulnerable, President Obama was quoted in an AARP bulletin saying that the “adjustments to programs like Medicare will ensure that they’re still around for future generations.”
David Certner, legislative policy director for AARP, believes such cuts will make it harder for patients to find access to medical providers. “The deeper you cut payments to providers, the more you create disincentives to treating people on Medicare,” he says. In a 2010 AARP survey, a overwhelming number of responding members were already concerned with the impact Medicare cuts would have on their ability to find accepting physicians.
Cuts Run Deep
Restricting or limiting patients is just one way medical practices will help to compensate for the reimbursement cuts. In a large survey conducted by the Medical Group Management Association, alternative cost saving measures may include cutting clinical staff and administrative staff, delaying the implementation of electronic medical records and foregoing the purchase of new facilities or equipment. All, of these “solutions” are to the detriment of the patient. Without adequate staffing, mistakes are inevitable and the already dread wait time is certain to increase. For clinicians who are deciding against purchasing new equipment they are making the choice to sacrifice updated medical technology for cost savings. It’s a no-win situation.
We will not know the full impact of the budget cuts until December when the 12-member congressional committee submits their budget proposal to Congress. And even then, it won’t be a matter of if there are cuts, but rather to what degree.
Budget talks are consuming. It doesn’t matter who you are, what you do or where you live, financial uncertainty will affect you one way or another, this includes patients in assisted living facilities.
As states prepare for the 2012 fiscal year to begin, many have made budgetary changes to their Medicaid program. Some of which include cuts to assisted living facilities. These cuts may create a wave of low-income, frail senior citizens looking for new places to call home.
Medicaid may not be enough
According to Senior Housing News many Medicaid-certified assisted living facilities are allowing only the bare minimum of Medicaid residents to reside in their facility. This becomes a critical issue when private funds for care have been exhausted and a person needs to rely on Medicaid to help supplement the cost of care. Many assisted living facilities are refusing to allow residents converting from private pay to medical assistance and forcing them to move. Why is this occurring, Eric Carlson, from the National Senior Citizen’s Law Center reported to Alyssa Gerace in her July 2011 article, “Assisted Living Residents Face Challenges When Transitioning from Private Pay to Medicaid” that Medicaid reimbursement is less lucrative than private pay. Many facilities would rather keep open beds available for private pay opportunities.
Can assisted living facilities do this? The short answer: Maybe. For residents residing in non-Medicaid certified facilities they can refuse to accept medical assistance as a supplemental form of payment. In these facilities, administration can dictate that lack of resources is an acceptable reason for discharge. However, for those residing in Medicaid-certified facilities, residents may have a case for staying where they are. ““The facility would need to force the person out, and the argument from the facility’s side is only that they’re not getting paid,” says Carlson. “The resident would have a very strong defense: ‘They’re just not taking the money I’m offering to them.’”
Don’t wait, Act now
So, what can you do if you or your loved one is running out funds? Don’t wait until the balance reaches zero. Speak with the facility administrator now about what options are available to you. You may find that they are accepting of your financial situation. They may provide you with alternative methods to help pay for care, such as the Veteran’s Aid and Attendance Benefits. Or, perhaps they will tell you to begin looking for alternative housing. In any case, speaking with an elder law attorney about your rights may not be a such a bad idea.
Regardless of regulations and certifications, there should be a moral obligation to take care of our elderly. Unfortunately most decisions come down to the dreaded bottom line and with health care facilities across the country working in the Red it makes accepting less-than-staller forms of payments much more difficult.
It has long been thought that when a resident at an assisted living facility is declining in health, the only option is to give up their “home” and enter a nursing home. But, this isn’t necessarily the case. For many terminal patients their final wish is to die at home, and for many home is in an assisted living facility. This is where they may have spent the last several years developing close relationships with other residents and staff. This is where they are most comfortable.
Although most assisted living facilities (ALF) are not equipped with in-house hospice units, many contract out with community-based hospice companies to provide end-of-life services to their residents.
Can Assisted Living Facilities and Hospice Care Work Together?
But is an assisted living facility, which by nature is designed for patients who do not necessitate the skilled medical care of a nursing home, able to accommodate patients in such decline?
According to the Center for Excellence in Assisted Living, in most cases, the answer is yes. After all, hospice was originally designed as an In-home service with the only clinicians being those from the agency. For many ALFs, the collaboration between their clinical staff and the hospice agencies allows for appropriate levels of care for dying patients. For the patient, the family and sometimes even the ALF staff, the hospice agency is able to provide the much needed physical and emotional support.
In case of Emergency
There has been some discussion as to how an ALF can ensure the safety of a hospice patient in the event of an emergency. The non-ambulatory status of many hospice patients poses a distinct problem for assisted living facilities who are accustomed transferring patients with moderate assistance. Although this may be a new dilemma for assisted livings, transporting non-ambulatory patients in the event of emergencies is easily care planned in skilled nursing facilities and hospitals. The most common method is to simply wheel the patients’ bed to safety.
When is hospice the right choice?
According to Homeside Hospice, a privately owned hospice agency inClark,New Jersey, there are several factors which may make hospice an appropriate level of care for an assisted living resident. They include:
A significant decline in resident’s physical or mental health status
The resident requires frequent visits to the MD’s office or the Emergency Room
The resident’s level of mobility has declined requiring frequent intervention by facility staff
The resident is losing weight which is not intentional
The resident is becoming weaker and requires more assistance with activities of daily living
The underlying disease is progressing at a rapid rate or a new diagnosis has been identified
The resident has recently chosen to stop aggressive treatment options
For residents in a steady decline or for those given a 6-month or less prognosis, hospice may be a comforting option and may even be recommended by the facilities social worker. Most agencies develop collaborations with the assisted livings in order to provide the patients with the best care possible.
The dying process is never easy. For most, it is an unwelcome inevitability; but, being able to die with dignity and honor is paramount for all.
Carol Steinberg of AFA Teens was kind enough to spend some time with us recently – below is the audio from the interview she gave us as well as a transcript. Carol offers some great tips for teenage relatives of people dealing with Alzheimer’s. AFA Teens is a site dedicated to mobilizing teens nationwide to raise awareness of Alzheimer’s disease and to engage teenagers in the cause. Here are some great resources from their site:
Interviewer: Good, thank you. Can you briefly introduce yourself, and for those who don’t know, tell us a little bit about the Alzheimer’s Foundation of America?
Carol: Sure. I’m Carol Steinberg and I’m Executive Vice President of the Alzheimer’s Foundation of America. AFA is a leading national nonprofit organization. Our mission is very care‑focused. Obviously, we’re all hoping for a cure but, until that day comes, there are the daily challenges that individuals with the disease and caregivers face. So we come out with programs, services, educational materials, et cetera, to help individuals with the disease, their caregivers, health care professionals, in order to improve quality of life for those with the disease and their families. We unite about 1,600 local member organizations across the country that provide the real hands‑on care that address emotional, financial, social, and practical issues of this disease.
Interviewer: A branch of the Alzheimer’s Foundation is the AFA Teens. Can you tell us a little bit about how they came about and their mission, vision and values?
Carol: Sure. The Alzheimer’s Foundation recognized that caregivers come in all ages. This disease doesn’t discriminate and people with the disease can be someone’s parent. If it’s early on, it can be a teen’s parent. If it’s early onset, it can be someone’s grandparent, uncle, aunt, et cetera, many of whom are living with teenagers or teens are responsible for some of their care‑giving activities. Or, even if they’re not involved in hands‑on care, they’re seeing what’s happening to their loved one. So we really felt that there was a gap, that teens needed to be educated and engaged in the cause. If they were dealing with it in their own families, they really needed to know that they weren’t alone, that they needed an opportunity to share experiences. As well, we felt this was really an opportunity to engage teens in meaningful volunteer opportunities, to groom them for health care careers, et cetera.
It actually came about by a teen herself who has since graduated Harvard, is in the corporate workforce, applying for her MBA, et cetera, who still serves as our President of the AFA Teens division.
Interviewer: And with that, Alzheimer’s disease is difficult enough for adult caregivers to cope with. What types of struggles have you seen teens and young caregivers experiencing when they’re helping to care for a loved one with the disease?
Carol: I think this is where we really see the emotional issues of the disease kick in. Teens tend to have a rough time in their teenage years anyway. And if they have a loved one, especially if it’s a loved one who lives with them, going through Alzheimer’s disease, they might be embarrassed to have friends over. There’s still, unfortunately, a certain stigma attached to this disease. They might be embarrassed that their loved one keeps asking the same questions over again or does things that really wouldn’t look “normal” to somebody.
Also, teens are affected because they might be responsible for care‑giving. There are studies that show that 1.4 million children, eight to 18, provide care for an adult relative. And Alzheimer’s disease is the most common condition that care recipients have.
So teens who do have a loved one with Alzheimer’s disease might not be able to partake in the extracurricular activities or go to the social events or the parties that their friends are. They’re weighed down taking care of some of the care‑giving responsibilities.
Yes, it can be a learning experience, but it can also be very trying in their teenage years.
Interviewer: Do you have any advice for them?
Carol: Well, I think the advice that we give to teens is really much the general advice we give to caregivers, that they shouldn’t face this disease alone. There are others going through the same experiences as them. I think, for a teen, that might be harder for them to understand. They probably think there’s no one in their shoes. But through the AFA Teens division, they’ll find there are peers who are facing Alzheimer’s in their family, who are facing many of the same experiences they are.
So through AFA Teens, which is an online community for teens as well as has chapters across the country, they could connect with other peers who are going through the same thing as them, talk to them on a bulletin board, read their blogs, find out they’re not alone, connect with our social workers to get some advice that they need that will help them get through it.
Interviewer: And how do they join AFA Teens or become involved with that?
Carol: Our website is www.afateens.org, and on there, there is a bulletin board. There are blogs that are currently written by our AFA Teens Advisory Board members, and they could get involved in that way as well. There are many tips on AFA Teens. They could write in to our social workers. They could also establish AFA Teens chapters at their schools or communities. And that’s a great volunteer activity, a great way to raise awareness, a great way to volunteer in their communities as well as gain leadership experience.
They could also get involved… AFA Teens does have an annual college scholarship. The top prize is $5,000, so college‑bound students can write about their experiences with AFA Teens. So they’re not only going for the gold, if you will. This really is a therapeutic way for them to write about their emotions. We also have an annual video competition for teens.
So lots of ways for them to express themselves, to get the feelings out. They could contribute creative contributions to our website. That, again, shows how other teens are dealing with the disease, how other teens have connected with their loved ones. So it’s www.afateens.org to get involved.
Carol: Yes, I’m still here.
Interviewer: Oh, I’m sorry. You cut out for a second. I think you were giving the website again.
Carol: It’s www.afateens.org.
Interviewer: OK, fantastic. We’ve talked about what the website has to offer. And I don’t know if you can answer this question or not. But is there any definite that a young person should expect when they’re faced with a grandparent or even a parent with the early onset dementia, that the disease is going to bring about?
Carol: Every person who has this disease is a different situation. Their symptoms might differ, the way it progresses might differ, the way they react to other people might differ. But there are some generalities that we could talk about. I think for teens, I think what will strike them the most is probably a lot of repetition on the part of their loved one. They might ask the same question over and over again. They could expect that there will be short‑term memory loss. Their loved one might not remember what they ate for breakfast, but they might remember something from 20 years ago when they were a child. They can expect, in general, confusion about who their loved ones are. And this can be most hurtful to a teenager.
The grandparent might not remember that this is their granddaughter or grandson, despite the fact that they spent every Sunday together, or went on vacations together, or just had breakfast together that morning. They really shouldn’t take this personally, as hard as it might feel. It is the disease that’s causing this.
I think another definite is that they can expect this disease to progress over time. So while their loved one might seem fine one day, the next day the disease might have progressed tremendously. For other people, it might take months until it progresses further.
But I think the other thing they can expect is, if they pay attention to the person and really get to the core of who that person is, if they pick up on the person’s past histories, hobbies they liked, things they used to do together, singing, looking through photos, et cetera, they might really be able to connect with that person. And they really are the moments to cherish.
Interviewer: What can they do, as a young person, to make a difference with the Alzheimer’s disease or with their loved one? I know you had mentioned some fundraising opportunities and things of that nature. I’m assuming awareness is crucial.
Carol: The purpose of AFA Teens chapters, although this could be done on an individual basis as well, is to really get educated about the disease. That helps the teen. It helps their families cope. Volunteer in your community. There are lots of long‑term care facilities that are looking for teens to volunteer. In fact, the Alzheimer’s Foundation runs a volunteer challenge each year. We just kicked it off this past summer where teens can volunteer in their communities, write about their experiences. So they could really make a difference.
It also might let them gain some insight into looking at a health care profession as a career opportunity. There is definitely a shortage of health care professionals, particularly dealing with the geriatric population.
One of our winners, for example, of our AFA Teens College Scholarship, decided to become a social worker based on her family’s experience with Alzheimer’s disease. We hear from others who have volunteered in their community, that they decided to go into geriatrics. So there’s a real opportunity to learn and make a difference.
Interviewer: Are there any other resources that you could share to help with teenagers or children to gain a better grasp on what’s going on in their lives and in the lives of their loved ones?
Carol: Sure. I think the main resource, again, is the AFA Teens website, afateens.org, where there is a lot of information, where they could connect with social workers and peers. The other thing I would recommend is, the Alzheimer’s Foundation of America puts out a free quarterly magazine for caregivers called “Care Advantage.” They could go to that website and subscribe for free. That’s afacareadvantage.org. There is a lot of practical information on there, real insights from other caregivers, and this is a great publication for teens to learn more about the disease as well as something for them to share with their family members.
The other website is carecrossroads.org. That’s another website put out by the Alzheimer’s Foundation of America, which is very family caregiver‑focused.
And again, they could read creative contributions from other caregivers, see some short documentaries by people going through the disease, as well as gain a lot of information from frequently asked questions and a house of care interactive site that we have. That gives pointers about activities teens could do with their loved ones, about safety precautions families should take in their homes, et cetera, then, of course, the Alzheimer’s Foundation’s main website, alzfdn.org, which could connect them to all of AFA’s websites as well as programs and initiatives that we have.
Interviewer: That’s fantastic. There really are a lot of resources out there for them. Is there anything else that you would like to share regarding the young caregivers and those dealing with Alzheimer’s and dementia?
Carol: I’d like to just reinforce again that they’re not alone. They should reach out for help. Education and engagement are the most important things they could do. Visiting their loved ones, doing meaningful activities with them, really do make a difference. I think, for a teen, it would sort of be a no‑regrets situation, that they’ve done whatever they could do to help their loved one go through this heartbreaking experience.
When seeking advice about senior care, assisted living, healthcare or caregiving, the web is full of information. Many sites are designed by professional experts and those who are experts of circumstance. These blogs span the realm of senior oriented material, from the tech savvy senior to the caregiver raising their children while caring for their parents.
So, we put together a list of some of the best elder care blogs out there written for the common good: to provide information to make aging a little less frightening. We tried to offer a brief description and a sampling of three good posts from each blog so people can get a quick feel for the content. We’d like to have this be a “living” resource that’s consistently updated over time. If we missed your blog or one worthy of being included, please let us know.
And, finally, we’ve created what we think is a very useful tool for anyone looking for information about elderly care or senior living: a custom search engine that will only return content from this list of sources. This is valuable because you’ll be able to look up information on senior living, and know that you’re weeding out any low-quality sources of information and only getting information back from these high quality resources. Simply type in any topic or question below, just as you would if you went to Google.com to search for something:
And of course if we didn’t miss your blog, please feel free to grab any of the badges below to display on your site by simply copying the code below and pasting it onto your Website!
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Carol Bradley Bursack developed Minding Our Elders after caring for a neighbor and six family members. She wanted to show the human side of caregiving to gerontology and nursing home administration students. Carol includes helpful resources, links and agencies geared toward caregivers.
Ryan Malone developed the “by families, for families” approach to elder care after an arduous experience with his own mother. His goal has been simple: to educate and inspire families to make elder care a positive experience. As the author of several elder care books, Malone uses excerpts to illustrate his family approach. He is also a public speaker and marketing consultant.
Authored by Lori La Bey, Alzheimer’s Speaks is geared for healthcare professionals and the general public. Providing information on services, tools, concepts and products surrounding Alzheimer’s disease, the blog shares in the organization’s mission of “Shifting society’s negative perception of aging and illness, by getting individuals and businesses to appreciate and embrace the gifts wrapped in every stage of life.” La Bey hopes to bring awareness to the disease while helping those in need.
The Everyone is Aging blog is built on the premise that everyone is aging. The blog’s author and founder Steve Gurney is a 20-year elder care veteran. Taking his professional expertise to the web, Gurney intends to show that people of all ages and abilities can live and work together. Through his posts and reader comments he hopes to inspire people to think differently about aging.
Patricia Grace, founder and CEO of Aging with Grace, writes Care Connections, a blog intended to help caregivers connect with others who are feeling overwhelmed in caring for their loved ones and are facing eldercare challenges and issues. Here you will find advice and stories from caregivers from across North America.
The New Old Age: Caring and Coping, brought to you by the New York Times, explores the challenges facing Baby Boomers who are finding themselves caring for their aging parents. Paula Span, along with several other contributing editors, examines the world of caregiving, writing on current events, personal experiences and the latest trends in elder care.
The SeniorHomes.com blog takes a closer look at relevant industry news on senior issues and senior housing trends and examines the implications on senior citizens, caregivers and medical providers. Posts also include marketing tactics, tips and trends for senior-living providers.
As the blog for the Assisted Living Directory, there is no limit to the topics discussed, except of course that they should be regarding assisted living, senior news, happenings and current events. Posts include tips and advice on the best options for long-term care, in-home care and elder care in general.
3 of our favorite posts form Assisted Living Directory Blog
Graceful Aging is a series of video blogs for seniors and caregivers by those who want make every day a little better. Chock full of timely advice, compelling narratives and captivating opinions, Graceful Aging’s goal is to publish videos that enhance life.
Based out of Boston’s South Shore, Regarding your Aging Parents provides resources for local residents who are helping to care their loved ones. As two baby boomers taking care of their aging parents, the authors hope to provide their readers with contact information and support for others in their area. Posts also include relevant news and industry trends surrounding aging in place.
3 of our favorite posts from Regarding Your Aging Parents
This comprehensive blog of videos, narratives, news and views, brings baby boomers together in one forum. Designed and moderated by a boomer, Imagine Age welcomes reader responses and strives to create an environment of lively discussions. Topics include, among others, healthcare, aging, lifestyles and current events.
With the goal of allowing their loved ones to age in place , the authors of The Connected Caregiver share their secrets of maintaining a happy home with intergenerational members. Also included in the blog is the latest eldercare news and hot topics.
3 of our favorite posts form The Connected Caregiver
The Knitting Doc emotional blog about the trials and tribulations of a psychiatrist afflicted with Lewy Body Dementia. Follow Dr. David and his wife Pamela through the progression of this debilitating disease. In addition to his first-hand account of LBD, the blog also offers some pearls of wisdom for all of humanity.
Providing financial planning information and elder law advice, Marshal Elder and Estate Planning is an ideal blog for the non-lawyer caregiver. Posts include information on program and policy changes, planning advice and general news regarding elder law.
After years of dedicated caregiving to her mother, Carmie Travers and her husband, Jerry, maintain For Caregivers: Resources and Information that Empower Caregivers. The site is helps caregivers with advice and information to help them “soldier” on, demonstrating their love and commitment to their aging or ill loved one.
This is an open forum where members are invited to share what it is important to them. From news and views to relevant lifestyle narratives, this blog lends itself to more off-beat topics, but is also full of great healthcare, retirement and baby boomer information. Many of the blogs also include video posts to better illustrate the writer’s views.
Holly Eburne is not only a caregiver by trade but one of circumstance as well. At just 57, Holly’s husband was diagnosed with a dementia and after allowing the emotions to take control of her life, Holy found a way to regain control. Her blog offers stories of inspiration, tips and industry insight.
Up-to-date news on senior topics and health care, along with caregiver advice and tips round out this blog by Florida’s Elder Care Services. The mission of which is to help those they work with live the most fulfilling life possible, with utmost dignity, focusing on their physical, mental, spiritual, family and financial wellbeing.
Dr. Sandra Haymon, a licensed psychologist and the author of “Baby Boomers—Sandwiched between Retirement & Caring,” found herself with little information and now where to turn when she “inherited two adults in diapers.” Her posts include personal experiences of caring for loved ones, experiences of other caregivers and the industry’s latest research.
Lawyer Patricia Kefalas began her blog as a way to share information on her law practice where she focuses on advocacy for people with disabilities, seniors and their families. She also shares her own personal view on life, family and her personal interests
Barbara E. Freisner is an expert on issues surrounding seniors and their families. The blog and her website are designed to offer support, counseling and advice to those who are caring for their aging loved ones. Age Wise Living helps caregivers balance life and work, deal with power struggles of an aging parent and embrace the culture of the sandwich generation
The Medicare Solutions Blog offers information on health insurance, Medicare and issues surrounding health reform and politics impacting seniors. The timely posts are intended to help seniors make informed decisions about healthcare, insurance and political issues.
3 of our favorite posts from Medicare Solutions Blog:
Transition Aging Parents asks three important questions: Are you confused about caring for aging parents? Are you struggling with siblings on choices for mom and dad? Are you torn between caring for your parents or yourself? If you answered yes, this blog has the information you need. Posts include topic ranging from caregiver support to technology that can aid in care.
3 of our favorite posts from Transition Aging Parents:
Author Shelley Webb shares her personal and professional caregiving advice in this source for educational materials, support and strategies designed to enable caregivers. It is her hope to help caregivers create an easier, less stressful and rewarding life while offering support and care to their loved ones.
3 of our favorite posts from The Intentional Caregiver
This blog is full of the latest news information surrounding senior health and lifestyles issues. From the latest research to the newest treatments to heart healthy activities, MyOptum Health has a wide variety of posts to peak just about anyone’s interest.
3 of our favorite posts from MyOptum health—Seniors’ Health:
BMA Management provides relevant insider news surrounding elder care, including assisted living information, caregiving, senior health and regulatory updates. BMA Management is one of the top assisted living management companies and helps older adults find appropriate housing regardless of financial resources
3 of our favorite posts from the BMA Management Blog
Blogger Kaye Swain shares her perspectives of caring for parents while babysitting her grandchildren. As a member of the “sandwich” generation, Swain offers information, advice and stories of caregiving to others who are finding themselves dealing with children, grandchildren and aging parents.
The Alzheimer’s Reading Room offers practical advice and solutions for caregivers who are dealing with loved ones suffering from Alzheimer’s disease. Founded by Bob DeMarco, who uses first hand experiences for many of his posts, the blog is frequented by guest experts who offer additional insight.
3 of our favorite posts from The Alzheimer’s Reading Room:
Holly Eburne is a life energy coach who has a background in physical therapy, and also has personal experience with early on-set dementia as her husband was diagnosed with Frontotemporal Dementia at the age of 57. Holly was kind enough to share some of her personal experiences along with practical advice for caregivers in the interview below. You can visit Holly’s site to learn more about her experiences, her services, and some of the memory tips she shares there. Holly offered so much great information that we had to break the video up into two parts:
Transcript from the Interview:
Brenda: …now being recorded. Can you introduce yourself and tell us a little about who you are and how you came to be a life energy coach?
Holly Eburne: OK. My name is Holly Eburne, and I have been a sport physiotherapist for over 30 years. Sport, because I focus [unintelligible 00:22] some athletes around the world, and it was like coaching the whole person, it wasn’t just the physical. So, when my husband was diagnosed five years ago with dementia, and we were only in our fifties, it was about two years later when the reality hit me, and I sunk to the bottom of the lowest point of my life. And I’ve lost my mom and my sister and I’ve had other losses, but this really hit me, as well as our financial loss.
And I knew that I had to do something different, which was, I didn’t want to go to a counselor. I have patients who go to counselors, and they’re still on antidepressants. I needed something that was different.
And I’d heard about life energy coaching. I didn’t know what that meant. And I got in touch with [unintelligible 01:23] in Texas, and it was over the phone, and I thought, “Wow, how do you do that?” But now that I understand energy more, it was one of the turning points for my life in just dealing with the reality of our present situation. So, that is, it was a great model for me. And then, I just started taking courses, and one thing led to another and here I am.
Brenda: So, the life energy coach came out of a situation with your husband. Can you tell us a little about him and his diagnosis?
Holly: Yes. Dave was, it was in his late forties, and there were some warning signs. He was a high school teacher, and that was a pretty stressful job. And there would be just little things like, he would make [unintelligible 02:16] , he wouldn’t recognize one of the, one of, like, an item I wanted him to get at the store. And, so I just, you know, these little red flags, and I thought, “OK, that’s got to be stress.” And it got a little bit worse, he started having seizures in his early fifties. Again, “OK, well, seizures are in his family, so,” you know, “this is stress related.” He was sleeping more. He was losing interest in hobbies. And again, you know, I chalked it all up to stress.
He wasn’t diagnosed till he was 56, going on 57, when things really, when they got out of hand, when I realized, that all the brain books that I was buying for him and the food that we had, the nutrition that we had, [unintelligible 03:08] his brain, healthy food wasn’t working.
And, but I still didn’t suspect dementia. I thought, “OK, maybe he’s dealing with a tumor, maybe he’s dealing with an irritation of the brain,” you know, it’s all fixable. It can be fixable, let’s just say it’s not always.
But when the doctor showed us the CT scan and said, “I’m very sorry, but he has a form of dementia, I don’t know what type, because of his age.” And then it was two weeks later when they came up with his diagnosis of frontal temporal dementia. And by then, I had the reality, not the reality, but I knew that I didn’t need to seek a second opinion, because I knew that he was right. It was a shock.
Brenda: Now, obviously, this is something that is much more prevalent in the older community.
Holly: No, it’s not [unintelligible 04:01] .
Brenda: Being that he [unintelligible 04:02] .
Holly: Yes, dementia is more prevalent in the older population. But his form of dementia is the second and maybe the most prevalent form of dementia in under 65. It’s not, generally, it’s the onset in the forties or fifties. There’s some people that have been diagnosed in their twenties, and some in their seventies. But the average age is in their forties and fifties, his form of dementia. But I had never been introduced, or even was aware of that type of dementia. It starts in the front of the head and the sides and it presents itself differently than Alzheimer’s, which is only one form of dementia. People think that all dementia is Alzheimer’s. No, Alzheimer’s is only one form of dementia. And it affects more the memory, initially, and direction.
For Dave, his is more language, just not finding words, being, just even his social behavior. Asking questions that are quite [unintelligible 05:09] that you would expect he’d know the answers to, or even, talking about [unintelligible 05:16] like bathroom talk. You know, so, it’s more of a social, language deficits initially, and then progresses to memory, direction. You know, active problem solving is tough for him, judgment, [unintelligible 05:33] , common sense. Yeah.
Brenda: As a young caregiver, you know, we hear a lot about the caregivers who are caring for their elderly parents, but you are the spouse. So, what kind of trouble has the [unintelligible 05:47] for you?
Holly: Whoa. You see, my grandmother, my uncle, they both had dementia, so I know what it’s like to be a secondary caregiver. But to be a primary caregiver and to be in the, what I think is the prime of my life, this is what I expected to be the prime of my life, it’s hard to explain, because there’s so many facets to it. So, you’re grieving the loss of a life partner, someone who was able to share in the raising of your children, who would be able to help around the house, and who, someone you thought you had another three or four decades to grow old with. And it, yeah. It is, I’m living with it 24 hours a day.
And there’s not, it’s not like I can go and visit my grandma and then leave, knowing somebody else is going to take care of her. The responsibility, the buck stops with you. [unintelligible 07:01] .
And for the first couple of years, I thought, that it really only stopped with me. And it’s only recently, as I’ve grown and evolved, that I’m accepting and asking for help and know that this does not have to be a lonely journey. And it isn’t all on my shoulders, that people are, and want to help out.
But it’s quite an experience, one that I could never imagined I’d be going through. Anyway, it is, I wouldn’t trade it. I know that that may seem really odd to a lot of people, and people might, that might even anger some people, because they say, “How dare you?” But I’m in the middle of it, I’ve had, you know, I’ve lived with this for over five years.
And personally, what it’s done for me and the peace that I’ve found in the, and just the patience and the mind is to live for today instead of worrying so much about the future, because that’s not going to help. You’re going to miss out on what today is.
I, honestly, would not trade my life and the lessons and who I’m becoming for who I was before, to change [unintelligible 08:20] . It’s not easy, I’m not going to pretend, Brenda, that it is easy. But I guess it’s well worth it. It’s well worth it when you work through it.
Brenda: Knowing that you’re going through this with your husband, you’re not alone in going through this. So, what advice can you give to other caregivers who are also dealing with dementia, whether it be in a spouse or even in a parent or grandparent?
Holly: Right. Initially, you take on more than you think, you take on more than you really have to. And when life feels really difficult and it feels like you’re in resistance or that you’re just exhausted, you need to take a step back, you need to remove yourself, and try to think about, “OK, how can I make this situation easier? How can I take care of myself?” Because the worst thing we can do is to do something because we think we should. And also, to put that other person before your needs, because you won’t be around for that other person if you continue to do that. And if you are around, you’re going to have anger, or you’re going to have bitterness, or you’re going to have, you’re just not going to be coming from that place of real [unintelligible 09:43] unconditional love.
So, my biggest piece of advice is, and I’m sure they’ve heard this before, but if you don’t take care of yourself, it’s like in the airplane, if you do not put the oxygen mask on yourself, you cannot help your caree. 30 percent of the spouses die before the one with the dementia, because of stress. And the scientists have already proven that over 95 percent of all our illnesses and diseases are caused by stress.
So, we are going to live. We have the capability to live longer than that person with dementia. But we also have that capability of helping them to the best of our ability, and that’s by helping ourselves first.
Brenda: So, outside of helping yourself, are there any other secrets that you’ve had for moving forward? You know, you were dealt a pretty big blow. What has allowed you to accept what has happened to your family and made you be able to continue on?
Holly: When the doctor gave us the news, I was in shock, because here I am in the health field, and I just, I didn’t see it. And yet, I was buying, you know, brain books and children’s [unintelligible 10:58] . And so, I, I just lost my train of thought there. Extraneous noise. I’m sorry, Brenda, I just like, get distracted by all that noise. I, [unintelligible 11:23].
Brenda: What were your secrets for moving forward?
Holly: Going to the very bottom and actually admitting that I was at the bottom, being aware of my emotions. And admitting to myself that, just admitting to myself that I am where I am. That I, and I stopped running away. I stopped keeping myself so busy with things that, and that’s what I would do. I would fill my days, so that I didn’t have to think about or feel the pain, that’s what I didn’t do. I finally started to feel the pain, I gave myself permission to feel the pain. And then, when I finally did that, it was about two days later, when I woke up to the fact that I have a choice. And I have a choice of staying where I am, with my story of being a poor caregiver who have lost all their finances and have to start over in their fifties, or I can let that go and take baby steps.
So, three steps that I took. Number one, awareness. Number two, realizing I have choice and freedom to either stay or to step forward. And number three, to take those baby steps.
And those baby steps were, you know, exercising every day, meditating in the morning, getting out a gratitude journal, and writing five things I’m grateful for every night. Learning to receive help from people who would offer it, because actually, you’re giving them a gift by doing that. Learning to ask.
Those are all little baby steps that I chose to take, knowing that, you know what? This is my reality. This is my reality, how can I feel alive again? I was tired of wasting my life, because it was, I just, I owed it to myself that life is a gift and I was wasting it by just being where I was. And that’s what I did.
Now, everybody is going to respond differently, and everybody will reach those points at different times. But I reached it at the two year mark, that was three years ago. And I, you know, I did choose to.
Brenda: Holly, do you have anything else that you would like to add, that would help caregivers in the same situation as you? [unintelligible 14:08] know that they’re not alone and that there is a way to continue on.
Holly: One the biggest lessons that I’ve learned and one, I would say, that helped me was when I finally surrendered to what if, I surrendered to my reality. It was that moment in the kitchen when I just said, “OK. This is my life. Now, what do I do about it?” And then it’s just life got easier. Instead of fighting, and trying to control the disease, and trying to [unintelligible 14:46] , I actually said, “This is it. The only thing I can control is what’s going on inside of me.” That’s where I focused. I focused on how I can come to peace with this. And I had months and years going inwards through courses, through time, through meditation, through walking in nature. That’s what I did.
And then also to be aware of your boundaries, to be aware of your boundaries for yourself. [unintelligible 14:17] that when people ask you to do things. And be aware of your “should.” Are you doing this because you really want to? Are you taking care of yourself? Are you having fun? Tell me how many times a day do you laugh. Just because we have this situation doesn’t mean that the fun part of our life is over. Not a chance. It is your life. It can become what you want it to be, but it’s up to you. It’s your choice.
Everyone wants to do what’s best for their aging parents, but it can be hard to know when it is time to hire some extra help. Home care services can be a good solution for elderly patients who want to maintain their independence, but still need help with their medical procedures or day to day living. Every situation is different, but there are a few signs that may indicate it’s time to hire a home health aide.
1. Difficulty With Medications
With age comes more medications. As the number of medications increases, it can be difficult to keep track of what to take when and what might interact. One of the leading causes of ER visits in elderly patients is medication interaction, so it’s important to take these issues seriously. If your parent is having a hard time keeping track, a home health aide can help keep records and make sure that all medications are taken at the correct time. Home care services can also include checking vital signs and mental state for conditions that require continuous monitoring.
2. Difficulty With Personal Care
If your parent is having difficulty with daily personal grooming and care, or needs help getting in and out of a wheelchair, home care might be a good option. Cleanliness is important for health and healing, as well as general well being. This help may include bathing, grooming, and dressing.
3. Difficulty Standing For Long Periods of Time
The inability to stand for long periods of time can make many aspects of home life more difficult. It can be hard to do basic chores like sweeping, vacuuming, or cooking. Home elder care will help with everyday chores and housekeeping. They will also help plan and cook nutritious meals, follow dietary guidelines, and keep track of intake if it is necessary for medical care. This can take a significant burden off of parents who have difficulty walking or standing.
4. A Desire to Retain Independence
Assisted living at home is a good alternative to nursing homes or full-time care. It allows the parent to stay in his or her own home and maintain a usual routine while still providing the medical and domestic attention necessary. If your parent doesn’t want to lose independence, but still could use extra help, looking into home health care agencies might be the right choice.
5. The Family or Parent Feeling Overwhelmed
Aging and elder care can be stressful for the parent and the family. If the stress is putting a strain on everyday life or family relations, it may be time to find help. Home health care agencies will help educate the parent and the family about care and provide companionship for the parent throughout the day. Home health care can ease the strain and the work load for everyone involved.
Hiring home care is an important decision. While these are some good guidelines, it is important to go case by case and do what is right for your family.
We are proud to announce that Assisted Living Today has been accepted as a member of the Alzheimer’s Foundation of America. As an AFA member, our organization is recognized as being dedicated to aiding individuals with Alzheimer’s disease, memory care and related illnesses, and their caregivers and families.
For many senior citizens, the emerging opportunities to receive in-home care as they age are welcomed. Many seniors fear being placed in nursing homes after reaching a point where they can no longer live independently, and they view in-home care as a better option than nursing homes or hospitals. And while senior home care services fit well with the medical needs of many senior citizens, there can be prohibitive disadvantages as well.
Home Modifications and In-Home Senior Care Services
Assisted living facilities usually offer accessibility options and can reduce the need for modifications to be completed on the senior citizen’s residence. Most homes, however, whether owned by the senior or belonging to a family member, are not equipped to meet the accessibility needs of aging citizens who struggle with mobility or have medical problems.
Modifications can be costly, and many seniors resist or outright reject the need to make necessary or helpful modifications. They might insist, for example, on their ability to climb the stairs to the front door on their own, claiming there is no need to install an accessibility ramp.
As a result of being unable to afford or unwilling to complete home modifications, those receiving help at home senior care may be at greater risk for injuries resulting from falls in parts of the house which may be difficult to navigate. Occasionally, more serious complications of health problems stemming from a failure to modify living facilities can occur.
Another disadvantage of senior home care services is that deficiencies in caregivers can occur. First of all, it’s easy for family caregivers to become burnt out or struggle with the emotional implications of caring for a family member with health problems. Full-time caregivers often lack the emotional support they need and may be at a loss for how to care for some of a senior citizen’s emotional and physical needs. This can result in frustration and a sense of helplessness and guilt for both parties.
Hired caregivers, on the other hand, can also reflect the disadvantages of in-home senior care. The staff at assisted living or nursing home facilities is usually large enough to make up for deficiencies in a single staff member. This is often not the case when in-home care is utilized, where a hired caregiver’s lack of ability may severely affect the senior citizen.
Often, the hired caregiver’s deficiency is not in doing his or her job, but in the hours that the caregiver is absent from the home. This places heavy responsibility on family members, who may be ill-equipped for the duties of assisting the senior citizen, to provide care during the hired caregiver’s off hours.
Emergencies and Senior Home Care
A final, major disadvantage to receiving at home senior care is the lack of resources and medical options available during an emergency. Senior citizens at an assisted living facility have access to a larger support staff with medical training and resources in case of a medical emergency; whereas those receiving in home care may not always be in the best hands.
In addition to possible caregiver deficiencies, whether familiar or hired, seniors may also be at risk during emergencies due to a lack of emergency medical equipment. When the only option is to call for emergency medical help and wait for it to arrive, senior citizens may suffer more serious health complications than if their medical problem was attended to immediately.
For many senior citizens with few health problems, these disadvantages are not of primary concern, making senior in-home care a viable option. For others, mobility and health issues make considering these disadvantages a pressing issue. Senior citizens and family members should look carefully into these and other potential problems before choosing the care option that is right for them. Since each person is unique, with different priorities and physical or emotional concerns, this decision should be made with the individual’s needs in mind.
Roberta Weathers is an author and self-proclaimed perpetual blogger. She has worked with the seniors for more that twenty years in different capacities: first as a nursing assistant then as a home health aide and also as a Social Services Director in a long-term care facility.
Roberta writes about subjects that are near and dear to our hearts here at Assisted Living Today, which include the current state of traditional nursing homes that are “less concerned with providing a home-like atmosphere and quality medical care for residents than they are about generating profits to shareholders.” For more on the sad state of nursing homes, see our infographic on the rash of nursing home closures in America.