I am so pleased that I FINALLY figured out how to post someone else’s blog entry and I do so with this one by Lark Elizabeth Kirkwood. How wonderful that Lark was able to have that musical connection with her father at that time in his disease. One of the last songs I sang to my father, a couple hours before he died, was “Aloha Oe” which is a good-bye song in Hawaiian. I know he heard the song as he rode on the wave of departure from this Earth. Reading Lark’s many posts about the positive effects of music on those with dementia or brain injuries is so timely as I am still reeling from the positiveness of Diane Sawyer’s 20/20 program on ABC that was broadcast earlier this week. Her story of Gabrielle Giffords and Mark Kelly was inspirational on so many levels. Music had, and continues to have, an AMAZING healing effect on Congresswomen Giffords recovery from that horrific gun shot injury on January 8th, 2011.
A senior citizen receives mail that promises her the opportunity to receive a $10,000 Sweepstakes check but first she has to send the organization a $25 check or she is told to wire money in order to receive the proffered $10K. This same lonely person receives CONSTANT phone calls in which many demands are placed upon her to send money or they will come to her residence and cause her bodily harm.
It doesn’t matter how many times you tell your loved one to hang up when she receives one of these calls. It doesn’t matter how many times you try to convince her that responding to the mail and/or the phone calls will not net her any positive financial results. She always responds, and because she’s still able to mail a check or drive to Western Union and wire money to these nefarious people, she keeps doing so and finds herself in a heap of financial trouble.
Let’s consider the following mail fraud scenario: at a long-term care (LTC) facility, the staff, along with the resident’s family members, changed the resident’s phone number numerous times and rerouted her mail to go elsewhere, but because of the persistence and trickery of these unscrupulous people, they always managed to get through the filters set up to eradicate them. This particular resident’s apartment was finally searched by staff, at the suggestion of local law enforcement and with the permission of the resident, and what they found would make your blood boil. This resident had shoe boxes full of “Sweepstakes” documents, and once the apartment had been cleaned out, over a dozen large garbage bags filled with documents had been removed. Once this resident responded to these criminals by sending money, they had a victim upon which they could rely.
I’m not going to address the issue of identity theft per se which is another prevalent type of fraud exacted upon elderly adults. Let’s concentrate on mail fraud which can certainly lead to identity theft. With mail fraud, which eventually can lead to “phone fraud,” the victim in question is oftentimes isolated, lonely, and as most senior citizens will tell you, is worried about having enough money to get her through her later years. The promise of a $10,000, or higher, windfall is just too good to resist. Let’s be honest with ourselves – we can’t resist this type of temptation either. If you’ve ever purchased a lottery ticket, and I’ve purchased many, you hope beyond all reason that this time the lottery ticket will have the winning numbers, because after all – somebody has to win! When you’re a senior citizen and money is tight, why not hope beyond all hope that the $10K Sweepstakes could be real, as unlikely as that may seem to us?
So how does one put safeguards in place to ward off these types of criminals?
If you live close enough to your elderly loved one, have a look-see around their living space. Do you see any piles of envelopes that look suspiciously like one of these mail fraud schemes? When my father lived in a one-bedroom apartment in an assisted living facility, as he left the room to use the bathroom and/or to take a nap, I did some Irene-sized investigative work. I didn’t stop at simply looking at what was on top of his desk, I rummaged through the drawers. I looked at his checkbook register for suspicious outgoing checks (there were a few.) I tried to discern if there were any Sweepstakes letters from repeat offenders who thanked him for his previous money submission and asking for more – again, there were a few. I know that this investigative activity reeks of privacy invasion but if that meant protecting my very generous father who was in the early stages of dementia – I was willing to do so. And I didn’t stop there. I cleared his desk of all but one or two Sweepstakes envelopes so he wouldn’t notice that absolutely everything was gone, and I stuffed them in my backpack and took them home to shred. If you don’t live close enough to visit on an ongoing basis and suspect that your parent who lives in a long-term care facility is succumbing to this type of mail fraud, call a staff department head and ask him/her to have a look at what is visible on top of your loved one’s desk/coffee table. You shouldn’t ask staff members to open drawers – that’s inappropriate and is actually against most facilities’ resident privacy policies. Once you are aware of a concerning outcome, then you can take steps to provide personal intervention on your loved one’s behalf. A phone call to the local Long-Term Care Ombudsman Office located near your loved one will initiate a complaint and that office will attempt to resolve this matter on behalf of the resident – your family member.
Phone fraud harassment – one step closer to elder abuse.
I became aware of a woman who received numerous calls a week from these scammers, threatening her with bodily harm if she didn’t wire the requested funds. These criminals have no conscience whatsoever so they aren’t shy about yelling at the elderly victim; making fun of them when they cry on the phone because they’re afraid of the threats; calling the elderly person a loser and that they’ll never have enough money to carry them through the remainder of their pitiful lives. As cumbersome as it may be, I strongly suggest you have your loved one’s phone number changed. Only those who need to have the number: family, close friends, medical personnel, and facility administration, should be given the new number. You may have to do this several times before the stream of fraudster phone calls come to an end.
Resources on which you can rely.
The AARP website has links to resources that are very informational regarding elder fraud. Once you access their website you can link to the chapter that is active in your local area and you’ll find contact numbers for Fraud Fighter reporting. Additionally, the Attorney General’s Office (Washington State website linked here) is very helpful. Not only can you report cases of fraud through their website, you will also find a list of scams currently making the rounds. Let’s not forget the U.S. Postal Service as well. They have a postal inspection division that walks you through the steps of preventing and/or eliminating mail fraud. I think once you start typing elder fraud into an internet search engine, you’ll find numerous links, such as The Elder Fraud Project, that will prove helpful.
Whatever you do – don’t sit idle and ignore the signs of mail fraud. I can guarantee you that the scammers trying to acquire as much of your loved one’s money as possible are not idle – they’re hard at work to enrich themselves at your loved one’s financial expense.
If your loved one no longer has a voice in which to defend or advocate for herself, who better to do so than you?
In this post I will assume that your loved one, e.g., parent, grandparent, spouse, or sibling, lives in a long-term care (LTC) facility. Oftentimes by the time our parent has entered a facility, we are so relieved that someone else has taken over the caregiving, we willingly take a back seat and let the professionals do their job. By all means, reward yourself with the freedom that less active caregiving of your loved one has afforded you, but don’t leave your caregiving role behind.
I know it’s hard to hear what I’m about to say – especially since you finally turned over your parent’s caregiving to someone else – but I want to encourage you to NOT assume that the care being provided (or withheld) is in your loved one’s best interests. It’s easy to have a perhaps unwarranted laid-back attitude because:
- mom is being taken care of by trained professionals who wouldn’t be doing this job if they didn’t love it; and/or
- mom is living in a ritzy/expensive place so it must be the best option for her; and/or
- this place couldn’t possibly have any problems as witnessed by the waiting list we had to climb to get her accepted.
I wish all of the above points were reason enough to become somewhat removed from the picture but the truth of the matter is that none of the above have any bearing on the quality of care being provided to your mom. Let’s take each point separately.
- Without a doubt, there are caregivers and management staff that truly do love what they do and this attitude is demonstrated in the compassionate way in which they care for your loved one. However, in 2007, studies showed that staff turnover rates ranged from 50 percent to well over 300 percent a year! There’s a reason why caregiver turnover is so high. This job is TOUGH and the pay is unconscionably low. A 2004 U.S. Dept. of Health and Human Services report addresses the front line long-term care workforce challenges which have only increased in the past several years. This report is worth your while to read. Learning is power – right?
- Champagne and chandelier facilities are just that – beautiful buildings on their face, but not necessarily representative of the care being provided. Don’t get me wrong, I’m aware that stellar higher-end senior housing companies exit, but it’s important that we not be lulled into thinking that glitz equals great. Sometimes what I call “generic” buildings oftentimes provide as good or better care.
- The waiting lists that so frequently exist for LTC facilities – especially for dementia care – are representative of the demand for space that, as of 2011, is not adequate for the burgeoning influx of Baby Boomers needing care. So a waiting list does not necessarily represent quality.
So here are some pointers for you that I hope encourage your continued involvement in your loved one’s care.
SPEAK UP. You don’t have to be a squeaky wheel to get the grease.
- Be persistent yet respectful.
- Take the time to be a part of your loved one’s care meetings/conferences with staff to discern their reasons for the care being provided.
- Be present: in person if you live nearby or by phone if you are a long distance family caregiver. Trust me, if the caregivers know that you care and are going to be an active family participant, you’ll get their attention, and so will your loved one.
OBSERVE. When visiting your loved one, observe her behavior and demeanor; her cleanliness and her appearance. How does it differ from visit to visit? Is her room tidy, clean and uncluttered? One way to observe staff members in action is to accompany your mom on facility outings. Observe the staff’s interaction with the residents. Do they speak respectfully to them? Are they patient with them? Do the residents enjoy their outings or do you get the impression that these outings are forced upon them? All of these impressions are important towards discerning what goes on in your absence.
ADVOCACY RESOURCES. Do your part in acquiring the tools needed to better understand the resident rights guaranteed by law that your loved one should be receiving as a long-term care facility resident. Each state in this country has a LTC Ombudsman program. Get acquainted with their mission of advocating on behalf of vulnerable adults and contact your local program to receive help in assuring optimal care for your loved one.
A doctor is talking to his patient one day and he says, “I have some bad news and some terrible news.”
The patient asks, “What’s the bad news?” and the doctor says, “You only have 24 hours to live.”
The patient says, “Oh no! What news could possibly be worse than that?”
And the doctor says, “I’ve been trying to contact you since yesterday.”
The heading from an Associated Press story by Matt Sedensky, “Who’s going to take care of our aging population?” should wake ALL of us up; not just us Baby Boomers, but ALL of us because at this stage of our world’s existence, no one has created a magic elixir that cures old age and dying.
Talk to anybody who is in med school, or considering med school, ask them what specialty they would like to focus on and you’ll hear: orthopedics, pediatrics, heart disease, cancer treatment – all worthy fields but I would venture to guess that not one of whom you ask that question has said, Geriatrics or Senior Health. “What about geriatrics?” I ask them. “We’re living longer so you’ll ALWAYS have a job taking care of a civilization that’s fighting to stay alive as long as it can!” They don’t buy it, especially since Geriatricians are one of the lowest paid medical specialties amongst the medical community.
Ugh! Who wants to deal with the wrinkly, saggy, hard-of-hearing, loud complaining geezers among us? Not very many according to the linked article above. According to Mr. Sedensky’s research, there is roughly one Geriatrician for every 2,600 people 75 and older. No wonder people can’t find a doctor who specializes in Senior Health! I facilitate an Alzheimer’s Caregiver support group in my town wherein these family members expound on their frustrating efforts to locate a doctor who: a) will spend the time needed to have a productive appointment with their aging parent; b) who knows enough about elder health issues to suggest a treatment that will provide quality of life for the patient; and c) who has a medical staff that is sufficiently trained to interact with their elderly patients. Unfortunately, the General Practitioner or Internist quite frequently provide the same treatment, and the same method of communicating, to their elderly patients – even those with Alzheimer’s or other dementia – as they do their patients in their 20’s thru 70’s. That just won’t cut it.
Older patients have more complex conditions – and more of them. If a medical professional isn’t accurately trained, he or she might discount an elderly patient’s symptoms as those expected during the normal aging process and therefore offer no effective treatment. “What can you expect at your age Mrs. Jones? Be glad that you’ve lived this long!” I know – that sounds really callous – but I dare say too many elderly patients are treated dismissively, and as a result their quality of life decreases greatly.
Think about it my fellow Baby Boomers. Are you willing to be dismissed just because your doctor doesn’t know what the heck he’s doing? I know that all of us have been to doctors who we’ve “fired” because of their lack of understanding and/or their failure to provide proactive treatment. The vulnerable adults among us might not realize that they have choices. They might not feel confident enough to challenge the highly educated medical professional to whom they have entrusted their lives. Who loses in that equation? We all do. If our aging relatives don’t have appropriate medical care options at this time in their lives, why do we think that there will suddenly be an influx of Geriatricians to treat us when we’re their age?
Maybe this is a lost cause for us but it doesn’t have to be that way for those coming up in the aging ranks behind us. What are your thoughts about this glut of Senior Health professionals? How can we hope to live in a world where quality of life – something we value greatly – is an unreachable, yet much desired goal?
I was touched by the following quote that appeared on Lark Kirkwood’s Elder Advocates site a few years ago:
Do all the good that you can, in all the places you can, in all the ways that you can, at all the times you can, to all the people you can, for as long as you can. – John Wesley
I want to add the following sentiment which has become a sort of mantra for the way I conduct myself:
We can begin by doing small things at the local level, like planting community gardens or looking out for our neighbors. That is how change takes place in living systems – not from above – but from within, from many local actions occurring simultaneously. – Grace Lee Boggs
I’m so encouraged by the different types of advocacy that I’ve witnessed across this nation. Some advocate for the elderly, some the disenfranchised or marginalized, others advocate for the humane treatment of animals. Whichever the focus – it’s all about advocacy. The good news is that whether a person lives in Redmond, Washington, like myself, or Washington, DC – we are all making a difference in each of our small corners of the Universe. Imagine if everyone did just that.
Instead of having the mindset that the only things worth doing are those which are grandiose and news worthy – and therefore believing that you have nothing to offer – do what you can, with what you have, and your impact will be grand. Many small, positive actions add up to great advances in the betterment of our world.
Regardless of your age, you can make a difference in the lives of others. If you’re looking for something to do, consider helping an elder or two. Let’s face it, unless death comes early for us, we’re all going to enter the elder category at some point in the future. You may someday benefit from someone else’s tender loving respect and care.
An epidemic has taken hold of this Nation. Adults 70 years or older are being infantalized. Adult children have decided that their parents can’t do anything without their guidance. Service employees, e.g. restaurants, retail store clerks and the like, feel compelled to talk down to their Senior customers. Caregivers in long-term care (LTC) facilities further degrade the residents with baby talk. These residents downsized their living space; don’t downsize who they are by treating them as anything other than who they are: intelligent adults.
Only you can put an end to this epidemic. If it is not eradicated by the time you reach the Senior Citizen age, you too will be subjected to its horrors.
Mom moves into your house because of a financial or medical reason, and suddenly Mom has no say in what goes on in her life. Everywhere she turns, her son and daughter-in-law are bossing her around in the guise of trying to do what is best for her. Mom wants to stay up late reading or watching TV and she’s told she should go to bed. Mom wants to do this activity, or that activity with friends outside of the home and she’s told not to leave the house because the son and daughter-in-law want to make sure she doesn’t get into any trouble.
Your Mom raised you and somehow you turned out o.k. She must have been a good parent, teacher, guidance counselor, child supporter, you name it. Just because she is living under your roof doesn’t mean she’s lost her right to have a say in matters that go on in the household. Ask her opinion from time to time. Let her somehow contribute to the functioning of the household, e.g. day-to-day participation in household functions, helping you with decisions you’re making about your own lives. Doing so will restore her pride and make her feel less superfluous. It’s quite o.k. to be concerned about her well-being – you should be – but you can do so without suffocating her.
Why is it that wait-staff, retail sales clerks and the like feel an immediate need to speak super loudly to a Senior citizen customer? In my work with the elderly, I made this very mistake by talking loudly to a LTC resident I had just met. She finally interrupted me, put her hand on my knee and said, “Irene, I’m old; not deaf. Please stop yelling at me.” So simply lower your voice and don’t call her a pet name such as “Sweetie,” “Hon,” etc. I’ll never forget my mother’s phone call to me many years ago when she was barely over 70 years old. She went to the Dept. of Motor Vehicles to renew her driver’s license. After filling out the paperwork and getting her photo taken, it was time for her to leave with her newly issued license. The DMV clerk then said quite loudly, “Now Sweetie – before you leave, make sure that you have everything with you that you came with.” My mother called me that evening, both angered and in tears, bristling at the way in which she was treated. In my mother’s eyes, the DMV clerk downsized her intelligence and abilities and that thoughtless act forever changed my mother as a result. Please treat your Senior consumers with respect and with dignity. They know they are older than you are – you don’t have to remind them of that fact with your ill-placed attitudes and gestures.
When I was 58 years old, a couple years ago, I picked up some items at my local grocery store and used the self-checkout counter to purchase my groceries. As I was leaving the store, the retail clerk said, “Thanks Dear!” A male customer who was older than me also went through the self-checkout at the same time but that retail clerk didn’t say a cutesy name to him! Oh Boy – she didn’t know what she had just started. I didn’t make a scene. I left the store, wrote a letter to the manager and included this blog entry/article with a suggestion that he update his store training to include my suggestions about how to treat Senior Citizens. He wrote me back to thank me and stated that he planned to provide updated sensitivity training to his staff. BRAVO!
Professional LTC caregivers.
Oh boy – I see this a lot. Caregivers who, God bless them, have a job that not many of us would willingly perform – especially at the low hourly wage at which they are paid. I admire you and I respect you. You’re a better person than I because I don’t have what it takes to do what you do. But please address your patients/residents by their given names. I would even go so far as to suggest that you call them by their surname until they give you permission to use their first name. “Good morning Mrs. Smith. It’s so good to see you today!” That’s a far more respectful greeting than the following: “Good morning Sweetie Pie. Let’s get you ready for breakfast, shall we Hon?” YUCK! God help the person who addresses me that way when I reach my Senior years. I’m a friendly person at heart, but I too would bristle at any condescending treatment directed towards me. (And considering how I reacted to the cutesy name directed at me in the supermarket a few years ago (above) I may not be quite as civil in my later years.)
BOTTOM LINE FOR EVERYONE CONCERNED. These Senior Citizens with whom you have contact survived the Great Depression and at least one World War. Surely they have the ability, and the right, to be treated with respect and given the benefit of the doubt when it comes to making their own personal decisions. Don’t take away their ability prematurely. Eventually they may not have the ability to function independently, but it doesn’t do them any good for you to hasten the time in which that may happen.
These guys rob a bank wearing gorilla masks. As they’re getting away, a customer pulls off one of the robber’s masks to see what he looks like.
The bank robber says, “Now that you’ve seen me, you have to die,” and he shoots the man dead.
The robber looks around the room. Everyone is looking away or covering their eyes. “Did anyone else see my face!?”
An Irishman in the corner slowly raises his hand. “You saw my face!?” “No, but I think my wife might have got a wee peek.”
Imagine, if you can, sitting next to your spouse of 25 or more years, and experiencing for the first time that she no longer recognizes you. As a matter of fact, she’s quite scared of you, fearing eventual harm, and backs away, even screaming, because you’ve become a menacing figure in the room. Or your father, who you have diligently visited at the facility several days a week for a couple years; he looks at you with a questioning glare and asks, “Who are you? Why are you here?”
You can’t imagine this scenario unless, of course, it’s happened to you. I’m talking to you, the new-found stranger in your loved one’s life, in the hopes of softening the blow that the above scenarios have landed on you.
Oftentimes during the course of our loved one’s dementia, we’ve managed to find the humor in some of the ongoing episodes, e.g. observing your wife as she stands in front of a mirror, carrying on a one-sided conversation with her new BFF; or your husband’s acceptance of you as a nice lady and all (even though he doesn’t recognize you as his wife), but he tells you he’s not gonna have sex with you because he’s already married; or perhaps you’re admiring the outfit your mother has chosen to wear for the day, only the bra and panties are worn on the outside of her blouse and pants and it’s time to take her to church! Kind of funny, right? But these odd behaviors take on a whole different light when, by their very nature, they cut you off from the loved one with whom you have shared so much history.
I first learned that my father no longer recognized me when I walked into his Oregon hospital room – he had been admitted with an ongoing prostate issue – and after spending a good portion of the day with him, he stood up to shake my hand and said, “Well Jim, it was nice of you to drop by but I have things to do.” Needless to say a) I’m his daughter; and b) my name is Irene. My 89 year old father was five years into his dementia by that time – and as it turned out, only one month away from dying – but the good news is that I had just experienced a really wonderful day with him and I felt very close and in-tune to him.
Did it feel weird for him to call me a name not mine? You betcha – especially since it was a male name – but let’s face it, my hair is pretty darn short so maybe I reminded him of a friend of his and that’s the name that came to him first. Unfortunately, his incorrect identification of me only happened once because the next time I saw him, he was in a coma dying from prostate cancer. What I would have given for many more opportunities to have passed off as his friend Jim. It was not to be.
The loss we experience with non-recognition. I think the biggest loss that is felt by family members is that their loved one no longer shares the same family history. No longer are we able to talk about old times; no longer can we reflect on the road trips, the Holidays, or the day-to-day memories that make a family unique. Nope – we’re on our own and even if we have other siblings with whom to share these stories, it’s just not the same. Imagine being the only child and your last remaining parent no longer has the ability to be a part of the stories and histories that keep your legacy alive. That’s a difficult pill to swallow to be sure. There are no amount of condolences, hugs, and “I’m so sorries,” that will take away this very real pain.
I think the only gift I have to offer those experiencing this scenario is to say that only YOU can provide the love that your father/mother/spouse/sibling can receive. A caregiver can’t take your place; a well-intentioned volunteer can’t take your place. Only you can transmit the familial love that will make a difference in your loved one’s life.
Whether your name is Jim, or sweetie, or heh-you: please know that you hold the only genuine love that can make a difference in your loved one’s life. If you can believe that – your visits might be a little less painful when you’re no longer the acknowledged spouse, adult child, or sibling of your loved one.
Do you feel as though you don’t visit your loved one often enough at the long-term care (LTC) facility in which they live? Try to acknowledge that guilt is a feeling that may not necessarily reflect an accurate reality of how attentive you are towards your loved one.
The local caregiver.
Many people have expressed their concerns to me that they’re just not doing enough for their loved one who lives in a LTC facility. Even when a caregiver visits Mom several days a week, the caregiver still feels guilty for not making more of an effort to be there for her.
Guilt is a valid feeling – I believe all feelings are valid – but the feeling of guilt may not accurately reflect what is going on. Let’s face it, most of us are hard on ourselves. The old adage, “we’re our own worse critic” came about resultant from generations of people who unfairly beat themselves into the ground.
At a recent gathering I attended, a woman expressed how guilty she felt for not visiting her mother more often than she thought appropriate. Another person, also a caregiver, suggested that this person ask herself whether or not she felt she was doing the best she could in this situation. “If you are, then perhaps your feeling of guilt is based on emotion rather than reality.” Whether five visits a week or one visit a month – if that’s the best a person is able to do, then it’s sufficient.
Some of us caregivers simply need to cut ourselves some slack. Even when the loved one we’re visiting has no concept of the passage of time and is not able to discern whether they’ve been visited as recently as the last hour or as long ago as last year, we still berate ourselves for not being there more frequently.
Caveat: I need to add that even if your loved one doesn’t a) recognize you, and b) can’t quantify the passage of time, you are still a wonderful addition to that person’s life. No staff caregiver can take your place when it comes to providing a loving presence for your Mom who lives in a facility. Just being there with a smile, a hug, and speaking words of compassion can do wonders towards brightening Mom’s day.
The long-distance caregiver.
My biggest role as a caregiver was that which I performed long distance for my father who lived in a dementia unit in a Southern Oregon assisted living facility. I felt like I was doing something truly valuable for him while I was there but as soon as I boarded the plane for Seattle the guilt enveloped me. Usually, the first night of my return was spent crying because I felt I had been impatient with him, or I acted flustered when I had to answer a question that my father had already asked me no less than two dozen times prior. I relived every moment of my visit, criticizing this and that about what I did, or didn’t do. I was a wreck. I had to talk myself into believing that dad did have a good time and dad was genuinely happy to see me, and by golly, I didn’t do that bad of a job as a caregiver daughter.
I could then relax knowing that he was being well-cared for in my absence; my visits augmented that care, and I could rest on that fact rather than falling back on my guilt. The NY Times article, Being There and Far Away sheds some light on the long distance caregiver’s experience. I hope you’ll take the time to read the article as I believe it will touch on some topics that all caregivers may experience.
As I mentioned in my Blog entry, Deathbed Promises and How to Fulfill Them take a deep breath and shed the mantle of guilt you’re wearing. It doesn’t do you any good and it gets in the way of you being the best caregiver you can be. Cut yourself some slack and don’t be so hard on yourself.
Do your best – that’s all that is required.
My recent blog, “Caregiving: The Ultimate Team Sport” assumes the person providing care for a loved one has a wealth of family members upon which to draw for support. When that is not the case it can be difficult to find willing team members to provide that support. This article provides advice to the solo caregiver and to his/her friends, business associates, neighbors, and community contacts.
CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.
Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you’re experiencing. Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance. Now is the time to be very transparent with them and tell them what you need.
DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT.
There is no shame in inviting yourself to dinner. If these are true friends/acquaintances of yours, they will welcome you into their home. Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis. Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way in which they can do so. Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.
ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!
I think the rule of thumb in these situations is to assume that your friend the solo caregiver needs a hand with something, so ask him what he needs. Let’s look at the difference between the following offers of assistance.
- “Hey Sam, call me if you ever need some help.”
- “Hey Sam, could you use a little extra help around the garden? I’m all caught up with my yard work and would like to help you in any way I can.”
- Hey Sam, we always cook for a crowd and always have some leftovers. I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself.”
In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help. You’re basically forcing him to ask for help. In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out. If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night. How about having a beer with me, and between the two of us, maybe we can make some sense of this mess in which I find myself.”
Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs. Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver. If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.
A team is only as good as its members. If the playbook isn’t carefully followed, success is unattainable.
The scenario for this article centers around care for Mom. It doesn’t matter if Mom is still living at home and cared for primarily by one of her adult children OR Mom is living in a care facility receiving care for her day-to-day needs outside of the home. Either way, the brothers and sisters of this caregiving team are in for the challenge of their lives. What follows is a simple, yet complex, listing of destructive traits that could get in the way of the family’s caregiving goal. All definitions are directly from the Oxford English Dictionary, 11th Edition, 2004.
- EGO. n. a person’s sense of self-esteem or self-importance. Brothers and sisters, please check your egos at the door. The exercise of one’s ego is so self-involved that the input of others, most likely controlled by their own egos, clashes with an individual’s perspective. Acknowledge that egos are front and center, but either check them at the door, or put them high up on a bookshelf to be retrieved at a more appropriate time, and work together for the common good, not one’s own good.
- SELFISH(NESS). adj. concerned chiefly with one’s own personal profit or pleasure at the expense of consideration for others. I’m seeing a trend here. Ego and selfishness go hand-in-hand and truly have no place in a team dynamic.
- COMPETITION. n. the activity or condition of competing against others. A successful sports team does not compete against its own members – it saves that for its opponents. Your brothers and sisters are your allies, not your opponents, so you will all benefit from considering each other as such. You want the same thing – the best care experience for your mother – so your common goal will be more effectively reached when all of you play on and for the same team.
- SENIOR(ITY). n. a person who is a specified number of years older than someone else. Just because you’re older than your sister doesn’t mean your input is more valuable than hers. Your younger siblings are just that – they’re younger, not stupid. I know that sounds harsh but I’ve seen this time and again where siblings maintain the same perspective of their childhood sibling relationships and it becomes a barrier towards moving forward as adults. Once you reach a certain adult age, those differences no longer exist. It’s hard to break away from the age hierarchy paradigm, but break away you must.
- SHARED RESPONSIBILITY. You’ll rarely find a family that carries the caregiving burden equally. Some members will do more than others, either by virtue of their proximity to Mom, and/or due to their abilities. But a greater percentage of tasks does not necessarily equate to a greater percentage of input regarding Mom’s caregiving. Arguably one could say, “You don’t care enough to help out so we don’t care about what you have to say.” One could say that but doing so is counterproductive.
I list the above traits because they can be very destructive when complex issues of aging and caregiving come into play. Imagine trying to come to a consensus of opinion regarding an appropriate level of care for Mom at any given time, or managing the financial dilemmas often inherent with the caregiving process; or the emotion-packed subject of end-of-life issues. Respect for each others’ opinions will go a long way towards paving the road with fewer speed bumps.
A caveat: I acknowledge that some family histories are far more complicated, and more dysfunctional, than others. Because of the unhealthy years that many children have experienced growing up, far more is on the table when working with one’s siblings. In those circumstances, a third-party unbiased counselor can be a valuable addition to the care team.
My question to you wonderful caregivers out there who have wrestled with this caregiving team challenge: how did you iron out the difficulties, or did you?
If you do not have any family members, please look at my article Solo Caregiving.
What’s a pitcher without a catcher? A quarterback without a receiver? A point guard without a center? Individuals – that’s what they are. They are not a team. Caregiving should never be an individual effort because quite frankly, one person can not do it all.
Whether the primary caregiver actually does hands-on-care or is the primary “manager” of a loved one’s day-to-day life, that caregiver needs all the support he or she can get. For the purposes of this article we’re going to assume that the loved one, Mom, lives in a long-term care (LTC) facility cared for by professionals. As with every sports team, there is a General Manager of the team – responsible for the overall smooth running of the team, and then there are the individual team members without whom there would be no support whatsoever. Let’s look at the responsibilities of each person on the team. GENERAL MANAGER: whether self-assigned or chosen, the GM is usually Mom’s primary contact/visitor. He or she will also be the main point of contact with the staff at the LTC facility and as such, should definitely be on the “approved list” of people with whom the care staff can discuss every aspect of Mom’s care. Getting on the approved list might involve one or both of the following:
- Facility Care Plan/Residential Agreement. Because of the restrictions resulting from the enactment of HIPAA anyone other than the actual patient/resident must be given permission to receive confidential information regarding another individual’s health condition. There is usually a section on LTC facility agreements and/or care plans wherein a primary family member is listed and approved as the person who can have access to all confidential information regarding the resident’s/loved one’s care. Similarly you’ll want to be on the approved list for Mom’s doctors so you’re able to freely communicate with medical personnel regarding any ongoing health concerns. If Mom is able, she will need to sign the necessary documents that indicate her decision to allow that confidential health information be shared with you.
- Power of Attorney for Health Care. This legal document allows someone, usually a family member, to speak on behalf of a loved one who may not be able to do so on her own. I’m not a lawyer so I’m not offering any advice regarding this document but the attached link will give you a thumbnail sketch addressing when the appropriateness of such a document comes into play.
Now back to the General Manager’s duties: the GM needs to play on the strengths of each team member.
Hold a family meeting – even involving those living out of town via telephone or skype – to discuss the strengths that each possesses and ones’ willingness to exercise those strengths. Once those team members’ tasks have been assigned or volunteered for, it’s up to the General Manager to provide oversight to assure each task is being accomplished, and to discern if any team member needs assistance completing tasks. As you can see, taking on the role of General Manager carries a lot of responsibility and quite frankly, anyone who assumes this role needs to be good and ready to carry a heavy load. The good news, however, is that the GM is not alone – there are additional members of the team.
FINANCE MANAGER. Your older sister is a finance whiz who’s very comfortable crunching numbers. She gets to take over the day-to-day system of bill paying, investment monitoring, and the like. You might even arrange for all mail to go to this sister’s home so that she has immediate access to timely financial information.
INSURANCE MANAGER. One of your brothers who works in the health insurance industry understands the ins and outs of private insurance and as it relates to Medicare. Congratulations, his strength will contribute greatly to the whole. But you don’t have to work for an insurance company to excel at this task. Some of us – yes, I’m one of them – really “gets it” when it comes to reconciling Explanations of Benefits (EOB) documents from health insurance companies. The Insurance Manager will work hand in hand with the Finance Manager to assure that any balances due a particular medical professional or institution is paid. This can really get sticky when attempting to make sure that everyone who is responsible for paying a part of the medical service – private insurance companies and Medicare – have paid their part prior to sending out a check for the balance. But effective Finance & Insurance Managers can successfully get the job done.
TRANSPORTATION MANAGER.Your other sister has recently retired, or has a very flexible work schedule, and has the ability to take Mom to the various doctor appointments that occur each month. Terrific.
That sister will be doing the running around with Mom and can make sure each appointment is scheduled, attended, and summarized. Since she’s going to these appointments with Mom, she can sit in on the appointment and bring up issues about which the family has concerns; she can take notes on what transpires during the doctor visit; then she can report the medical updates to the family so everyone is on the same page every step of the way. This sister will also need to be on the approved HIPAA document that the physician’s office requires in order for her to communicate and interact in such a way as to be on top of Mom’s ongoing health care.
FAMILY DYNAMICS THAT GET IN THE WAY OF EFFECTIVE MANAGING. Let’s face it, not every family gets along well enough to avoid the bumps in the caregiving road. If family dynamics were strained to begin with, you can certainly expect those dynamics to be heightened in stressful situations – and caring for Mom is certainly one of them. My article “Family dynamics that hamper caregiving success,” addresses family dysfunction and offers advice on how to lessen its impact on your caregiving team.
A team’s success is attainable – but each member has to dedicate themselves to the task at hand for that to happen.
You’re patting yourself on the back, congratulating yourself for:
- finally deciding that it’s time to move into Senior Housing; and
- deciding which type of long-term care (LTC) option suits your needs.
Now what? You’re scared to death because of the abhorrent negative press you’ve read regarding certain types of Senior Housing. Good for you – you should be! There are ways to make your selection a more trustworthy one. What follows will hopefully weed out the bad eggs, but there is absolutely NO guarantee the decision you make is 100% sure.
WORD OF MOUTH
Chances are that those similar to you in age – your friends, work associates, neighbors – have looked into or are currently looking into Senior housing options and they can be a very worthwhile resource. Don’t be afraid to ask them to share their experiences with you and you’ll certainly do the same with others as their needs become known to you. Better yet – if you know of someone who already lives in a LTC facility, visit them to discern what they think about their own choice.
HOUSING SEARCH RESOURCES
- Check out your state’s Aging & Disability Services Administration department (linked here is Washington State’s ADSA.) You really can’t go wrong checking out your State’s services for the Senior population. These resources usually have links to long-term care facility research tools, such as the Assisted Living section of my local state’s ADSA. No doubt your State’s Aging & Disability department will have similar links. If you’re looking for retirement communities that involve totally independent living, or a Continuing Care Retirement Community (CCRC), an all-care type of residential model mentioned in my previous blog “Selecting a Senior Housing Community”, your search will be less informational because most States do not license retirement communities.
- STATE INSPECTION SURVEY. All licensed facilities in the United States are inspected/surveyed every 12 – 18 months. This survey is quite thorough and covers absolutely EVERY aspect of a facility’s operations. When you tour a facility, always ask to look at a copy of that building’s latest State Survey. By law they must make it available to anyone who asks. I don’t think I would ever consider a Senior housing option without reading the building’s State Survey. You’ll find minor or major citations which will be very telling as to how the building is run and how the Administration or Owner of the building responds to such citations.
LONG-TERM CARE OMBUDSMAN PROGRAM (LTCOP)
Every state must have a long-term care ombudsman program in place. These programs are mandated by the Federal Older Americans Act and are intended to improve the quality of life for people who live in long-term care facilities. A call to the LTCOP intake line in your state is a call worth making. Let’s say you’ve narrowed down your housing search to a few options. You ask the LTC Ombudsman’s office about the types of complaints that have been filed against those facilities and this office will provide worthwhile information to help you make your housing decisions. The National Long-Term Care Ombudsman Center will help you locate your local LTC Ombudsman program.
SENIOR HOUSING LOCATORS
You’ll notice that I’ve placed this type of resource at the bottom of my list. There are numerous housing “finders” out there and they can certainly be helpful. You tell them what you’re looking for; what area of town you prefer; what type of care you need; and what you’re willing to pay; and they’ll come up with some options for you. Please keep in mind, however, that these senior housing finders have an inventory of housing clients that may or may not be representative of all that is out there. They may come up with some very good options for you but their list will most likely not be an exhaustive one.
Regardless of what/who you use to locate a LTC facility, I hope you’ll go through the previous options I’ve listed above to discern the appropriateness of any facility you’re considering. Perhaps a Senior Housing Locator has provided what appear to be some great options for you and you’ve even toured them and feel comfortable with what is offered. Prior to making your final selection, at the very least go through your State’s Long Term Care Ombudsman to discern whether or not any recent actions or citations have been placed against that facility. And when touring any housing location, be certain to ask for the facility’s latest State Inspection Survey so you can see what the State thinks about that facility.
Three sisters, ages 92, 94, and 96 lived together in a large, rambling house in Asheville, North Carolina.
One night, the 96-year-old was drawing a bath. She put her foot in and paused. She shouted to her two sisters, “Was I getting in or out of the bath?
The 94-year-old yelled back, “I don’t know. I’ll come up and see.”
She started up the stairs and paused, “Was I going up the stairs or down?”
The 92-year-old was sitting at the kitchen table, having tea and listening to her sisters. She shook her head and said, “I sure hope I never get that forgetful, knock on wood…”
She then shouted, “I’ll come up and help both of you as soon as I see who’s at the door.”
The most comfortable decisions you can make in life are well-informed ones. Whether you are choosing a vehicle, the vacation of a lifetime, or a potential residence, doing so is made easier when you’re armed with essential information. Oftentimes when inundated with too many choices, we exclaim that we would rather have fewer options from which to choose. “Give me two choices and I’ll be able to decide – six or more? Forgetaboutit!” There is one time, however, when you will welcome a diversity of options: selecting appropriate care in your Senior years.
Identifying the person in need of care.
This quest upon which you are embarking may be your own personal quest. You know staying in your current home might prove dangerous to you – and therefore inadvisable – in the years to come. Or perhaps you just want to retire from doing house repairs and weekend yard work –and who doesn’t? Whatever the reason, you’re considering your options for when you might be less able to take care of your daily needs.
Another scenario is that your spouse, parent or sibling is in need of some sort of long-term care resultant from a debilitating condition such as cognitive decline, mobility restrictions and/or advancing age, so you’re trying to discern how best to address the care needs associated with their condition.
There are two primary care options from which to choose:
- Aging in Place – This blog posting addresses the option of staying put and making adjustments that modify a residence to suit your needs or that of your loved one. Also included in this option is the potential for hiring in-home care. Both of these options allow a person to remain in their home for as long as possible.
- Long-term care (LTC) housing options. In a future posting I will address the available categories of long-term care (LTC) housing and will provide resources that should be helpful towards choosing a replacement for your current residential situation.
Both options have Pros and Cons involved with them. But only you know what best fits your personal situation.
Aging in Place: I don’t even want to think about moving!
Aging in Place refers to living where you have lived for many years using products, services and conveniences to enable you to remain where you are. To successfully age in place without moving you will most likely need to accommodate the physical and cognitive changes that may accompany aging.
Structural changes. Both the inside and outside of the home could eventually require some structural adjustments to accommodate a person’s current – and future – needs.
- If you live in a two-story house and your primary bedroom and bathroom are upstairs, does your bottom floor afford a bedroom/bathroom alternative?
- Are you financially prepared for the costs of making the inside of your home more accessible, e.g. wider doors for wheelchairs or walkers; lowered counters to accommodate same; showers that can accommodate someone confined to a mobility aid?
- Does the outside of your home allow for the addition of ramps and railings for easier access to the residence?
- If one of you has cognitive decline and is prone to wandering outside of the house – what measures, if any, will assure this resident’s safety?
- If you need care assistance during the day, are you comfortable having a health care provider in the home? The costs and logistics of hiring and scheduling staff to come into your home can prove to be overwhelming and oftentimes more expensive than if a person moved into a residential community that readily offers the needed care.
How expensive is in-home care these days? Caveat: I will not be addressing financing sources such as long-term care insurance, Medicare, Medicaid and the like. My intent in these articles is simply to provide an overview of care options and potential costs.
The U.S. Department of Health and Human Services gives a 2009 run-down on costs for care options both in the home and in a long-term care residential setting. I know that in Washington State, where I reside, the average Home Health Aide hourly rate is $22; the average monthly cost of an Assisted Living (AL) facility is $2870; and the average daily cost of a semi-private room in a nursing home is $225 which is approximately $6700/month.
Focusing on Home Health Aide/In-home care: based on the average hourly rate of $22, one could expect to pay close to $528 per day if based on an hourly rate. Keep in mind, however, that most staffing agencies offer a monthly rate which will be less than the hourly rate. But even with that “discounted” rate, in-home care can be very cost prohibitive. A great many of us may not have access to that amount of cash and if the need extends out to several years – now it’s really adding up.
So why even think of remaining in one’s own home if it’s so %#^%($ expensive?
All of the above is not to suggest that Aging in Place is not doable. Many people around the nation are successfully aging in place so why shouldn’t you have a crack at it? Consider this alternative: some people start out Aging in Place and then transition into a long-term care housing situation when finances, or circumstances, warrant such a move.
The articles, Avoiding the pitfalls of selecting senior housing, and Selecting a senior housing community – easy for some, not for the rest of us, provide some tips for your selection process.
I’m a Baby Boomer – are you one too?
No doubt you have already faced some challenges in your 21st Century age grouping called: Baby Boomers. I think you’ll agree, however, that along with those challenges we’ve also experienced delightful times that can only be experienced by us Boomers fortunate to have grown up in the 1960’s and 1970’s.
My hope in starting this blog is that you and I will be able to provide some sort of content that benefits our age group, but not our age group only. Let’s face it, our children and/or our grandchildren need some sort of resource that adds to their understanding of what we’re going through. They too will enter a Baby Boomer-Like age grouping when they reach our age so perhaps we’re doing them a favor by getting their feet wet in this wacky aging world in which we live.
Some of this blog’s content will be humorous; some of it will be inordinately sad. My hope is that one way or another, we’ll all be better off because we’ve entered this “Baby Boomers and More” blog site.