I like the above article and every single article that mentions some sort of steps moving towards diagnosis and treatment, even steps that are stunted right out of the block.
Stillness gets us no where. Although limited, at least this article discusses some progress towards shutting down Alzheimer’s and other dementias. During a time where very little good news is forthcoming relating to this disease, I’ll take anything – thank you very much.
Alzheimer’s Disease: Your Questions Answered | PBS NewsHour. We need all the help we can get in order to make well-informed decisions about any caregiving journeys that might occur in our future. The attached article shows a snapshot of one adult daughter’s 24/7 caregiving journey with her mother.
Perhaps you’re saying that you don’t anticipate your parents requiring any caregiving assistance in their frail years (perhaps your parents have already passed so no need exists there.) Do you have any siblings? close friends? a significant other? If you answered “yes” to any of those designations, the possibility exists that you will be called upon – or you’ll volunteer – to be of assistance to someone who needs help with their activities of daily living (ADLs).
Taking care of a loved one is no easy task. It doesn’t matter how much you love the person, your patience and your abilities will be tested. I truly admire the subject of this PBS article. Rebecca Wyant is the full-time caregiver and guardian of her mother, Mary Wyant, who was diagnosed with Alzheimer’s at the age of 65. Mary moved in with her daughter in 2006, is now 74 years old, and Rebecca is in her seventh year of personally providing her mother with full-time care.
How does Rebecca do it? She thought she was prepared for the task but soon discovered that finances, and creative ways of managing her mother’s care, are dwindling resources. With that said, however, Rebecca states that she is the only person who can provide the care that she can. She agrees that professionals could provide the care, but absolutely no one could possibly care for mom as Rebecca can. That part of the video disturbs me a bit, and I’ll tell you why.
I was an Alzheimer’s Association caregiver support group facilitator for several years and heard the voiced concerns of those daughters, sons, and spouses, who carried a great deal of guilt on their shoulders for not being able to keep up with the care of their loved one. They did provide the care initially, and then found their abilities wanting – and their health declining. They eventually made the very difficult decision to place their loved one in an assisted care setting.
Here’s the story of “Constance” and “Robert.” Constance first came to my support meeting at the age of 80 having already taken care of Robert at home for the previous three years since his diagnosis. Constance’s health started to decline due to lack of sleep – Robert’s dementia had no respect for the clock. Added to that dilemma was the fact that she had no existence outside of her house. She was trapped! Her friends abandoned her, all the social activities in which she had participated fell by the wayside, but she refused to move her husband into an assisted care setting, even though she felt they had the finances to support such a move – many do not and have no choice but to provide 100% of the care. “No one can take care of Robert like I can. I would never do that to him – placing him in someone else’s care. That’s my duty as his wife; a duty I take seriously.”
Fast forward one year later, and Constance had no choice but to place Robert in an adult family home with five other residents; it was either that, or she would have been forced to relinquish her caregiving role because, quite frankly, she ran the risk of dying before Robert. Once she relocated Robert to a care home, the well-trained staff provided all the assistance Robert needed, and Constance could now have the sole role of being his wife. She visited him almost daily until the day he died one year later.
Constance admitted that she wished she had moved Robert to the adult family home earlier than she had because she realized that being a committed wife didn’t have to include caregiving that risked her own health. She relished her reprised role as his loving wife when she visited him – none of the other care staff could fulfill that role but her – and the staff did what they do best, providing all the care her husband needed.
This is the nugget I want you to come away with from my above commentary: guilt and obligation are normal emotions that might prevent you from making decisions that may very well be in your best interests and those of your loved one. Please believe that allowing someone else to take care of your loved one does not equate to you shirking your familial duties. It does, however, tell me that you know your limits, and you know what is best for your personal situation in the long run. Additionally, it shows that you value your long-standing role as a daughter/spouse/partner/sibling, more than any new role as a care provider. There’s something to be said about retaining your given role in a relationship.
Caveat: as I indicated above, finding affordable care outside of ones home is no easy task, and you may have no choice but to provide the needed care for your loved one. But if you are able to find trusted family or friends who can “spot” you from time to time so that you can enjoy a needed time of respite, please do so. You’ll be far more able to carry out your caregiving task if you take care of yourself first. See my article: Caregiver: put on your oxygen mask first.
Associated Press News story – Japanese climber, 80, becomes oldest atop Everest.
The above article chronicles a “competition” between two gentlemen in their 80’s who endeavored to become the oldest person to reach the summit of Mt. Everest. I’m happy to say that 80-year old Yuichiro Miura reached the summit successfully on May 23rd, 2013 and became the oldest person to do so. Following on his heels is an 81-year old Nepalese man, Min Bahadur Sherchan, who will make his attempt some time next week, most likely making Mr. Miura’s 15 minutes of fame just a bit of has-been news as the Nepalese man takes his place as the oldest to successfully reach the summit. Not many of us – alright, none of us – will reach the summit of Mt. Everest or even care to do so…
and that’s okay.
We all have Everest moments, don’t we? Yuichiro Miura’s goal to summit Everest is not our goal. Mr. Miura stated his reason/goal to climb Everest: “It is to challenge my own ultimate limit.” We all have our personalized goals that involve reaching our own ultimate limit. I’ve had many of those moments in my 60 years of life – some of them exercise related, but more importantly, most of them were personal growth related. The most recent exercise goal has been the successful completion of two one-hour Pure Barre exercise classes…with three more to go in order to fully utilize the gift package that my daughter Erin gave me in honor of my 60 years. We’re doing this together, and please know that my 37 year old daughter is in far better shape than I am … and that’s okay. I am no expert on this type of exercise, and believe me, within minutes of completing each session, I’m in excruciating pain. But that’s okay because those exercise sessions didn’t kill me nor did they disable me; they simply made me realize that I was up to the challenge of doing more than I thought I was able.
Isn’t that the key? Maybe your Everest goal is finally having the courage to talk to someone about matters that concern you; or your Everest goal is changing jobs – or changing relationships; or perhaps your Everest summit is completing your high school or college education? Whatever your goal – whatever your Everest – when you reach that goal you are no less newsworthy than Mr. Miura or Mr. Sherchan. Quite frankly, what these octogenarians are doing is fabulous and I respect and honor their accomplishments – but I don’t admire their accomplishments any more than those of which you and I are the proudest. Mr. Miura stated that a successful climb would raise the bar for what is possible and that he had a strong determination that now is the time.
Now is always the time – because it’s the only time we have.
I’ll complete the remainder of the exercise gift package that my daughter gave me. Who knows, maybe I’ll buy some more sessions to continue on that journey – maybe I won’t. What I do know, however, is that I will always set goals, and I will always do my best to reach them.
When you do your best – you’ve done the best you can.
I hope you’ll feel proud enough of your Mt. Everest moments to share them with all of us. I, for one, can hardly wait to hear about them.
Lest you think that Alzheimer’s has nothing to do with you, look at the following statistics provided by the Alzheimer’s Association:
- By the year 2050, nearly one million new cases will be diagnosed each year – that’s one American developing Alzheimer’s every 33 seconds. Taken further, that most likely equates to nearly one and a half million new family caregivers each year – considering that at least one family member will be involved in managing a loved one’s care;
- Ten million Baby Boomers will get Alzheimer’s;
- On average, 40% of a person’s years with Alzheimer’s are spent in the most severe stage of the disease;
- The number of Americans that die each year from Alzheimer’s disease has risen 66% since the year 2000;
- Alzheimer’s is the sixth-leading cause of death in the United States;
- Today, there are no Alzheimer’s survivors – none.
Please take time to read the article I’ve attached above and consider the following: We are going to pay for Alzheimer’s one way or the other – now, or later.
This is a disease that will affect you, your children, your grandchildren, great-grandchildren, and beyond. Burying our heads in the sand won’t solve anything. Please consider donating to the Alzheimer’s Association as well as contacting your state’s congressional leaders asking for greater federal funding for Alzheimer’s research. Why? Because of this staggering statistic:
According to the National Institute of Health, the federal government currently spends much less money on Alzheimer’s research, prevention, and cure than on other conditions such as cancer, heart disease, and HIV.
- $6 billion for cancer;
- $4 billion for heart disease;
- $3 billion for HIV/AIDS; but just
- $480 million for Alzheimer’s disease.
I’m not comfortable with those numbers – are you?
In a recent NY Times post, Catherine Rampell writes about how the economy is affecting Baby Boomers; more specifically that it’s not just a matter of postponing retirement, it’s the need to hold down more than one job to meet the daily – and future – essentials of their lives. Ms. Rampell is quick to point out, however, “(I)n the current listless economy, every generation has a claim to have been most injured.” Certainly that seems to be the case as I have heard that Generation X and the Millennials have complained that Baby Boomers are to blame for the state of the economy – present and future.
Of this I am certain – each generation before us, and every generation after us, will contribute positively and negatively to the world as we know it. I have to believe that every generation has pointed their fingers at generations other than theirs, and talked about the good, the bad, and the ugly that permeates their times. Let’s look at those generations as posted on CNN, American Generations Through the Years: (figures and personalities provided by the Pew Research Center and CNN)
G.I./Greatest Generation: Pre-1928; Kate Hepburn and George H. W. Bush
Silent Generation: 1925 – 1945; Martin Luther King, Jr. and Tina Turner
Baby Boomers: 1946 – 1964; Oprah Winfrey and Michael Jordan
Generation X: 1965-1980; Jay-Z and Tiger Woods
Millennials: Post 1980; Christina Aguilera and Mark Zuckerberg
We’re all struggling in some way, and we’ll continue to struggle as we mimic the overall consensus felt through all generations. There are carefree times, and then there are all the rest of our days, and we get through them, because we must. We’re better for it, but it doesn’t feel like that while we’re going through it. I have to look to Brendan Marrocco, a twenty-six year old Iraq war veteran who lost all his limbs because of a roadside bomb in 2009. In an Associated Press story, in the Seattle Times, Brendan said he could get by without his legs, but he didn’t like living without arms. “Not having arms takes so much away from you. Even your personality … You talk with your hands. You do everything with your hands, and when you don’t have that, you’re kind of lost for a while.”
The end of January 2013, six weeks after getting a double arm transplant, Brendan said the following at a coming-out press conference about how he’s made it thus far:
Just not to give up hope. You know, life always gets better, and you’re still alive. And be stubborn. There’s a lot of people who will say you can’t do something. Just be stubborn and do it anyway.
Sobering words, and ones that force us to reassess our current situations. I’m not trying to minimize what you might be going through, nor of what’s going on in my life. It’s just that I personally can’t help but focus on Brendan’s plight and then consciously turn my eyes away from my me-ness, and towards other-people-ness. Is Brendan worse off as a Millennial who lost so much but gained a huge dose of intestinal fortitude, defined as strength of character; perseverance? If it were me, I would be wallowing in a very deep pit of self-pity. That doesn’t seem to be Brendan’s current location.
I have been asked to hold workshops at two different Middle School/Junior High Schools in the next few weeks in an attempt to show that the gap between us Baby Boomers and the pre-teen/young teen population isn’t as big as one might think.
The age group of this audience is not one with which I have ever worked but I absolutely love stretching my skill set so I’m very excited to take on this task. I hope to deliver a workshop that engages the younger age group and leaves them with the tools needed to be more comfortable connecting with people in older age groups.
Description of the workshop, submitted to the schools: There is so much to be shared between generations, but we often miss out because we feel as though we speak different languages – and sometimes we do. For example, when you say that something’s “filthy,” your grandparents might have said it was “boss.” Believe it or not, your grandparents, and your great grandparents, were your age once so you do have that in common, and while it’s true that there is a lot to learn from older generations, they can learn a lot from you, too.
That’s where you come in. We all know that there are obvious differences between the two generations, given the advancement of technology and the like, but I think a closer look at those differences brings about the realization that many similarities exist but they are just dressed differently.
I covet your input so please feel free to leave some suggestions and/or comments below.