Seattle Times: Seniors for Sale, Part 1
My local newspaper ran an investigative report about the Adult Family Home (AFH) industry in Washington State. Depending upon where you live, a similar assisted living home may be called a Group Home.
In Washington State, no more than 6 residents can live in an Adult Family Home. These “businesses” popped up all over Washington State over the past several years as entrepreneurs realized how much money they could make taking in residents and charging thousands for rent and resident care. At this writing, there are close to 2,900 AFHs in the state. Since 2010, 446 of those were cited for violations of health or safety standards. Caveat: there are many Adult Family Homes that are doing an extraordinary job, but it’s the bad ones that make the Headlines and that’s the way it should be.
June is Elder Abuse Awareness Month. I thought it appropriate to provide Michael Berens’ series, “Seniors for Sale” in six parts this week, but I provide it with a warning that this Pulitzer Prize winning expose can be very difficult to read, and watch. Nevertheless, awareness is key, so I hope all will benefit from his extensive work on this piece. Whether you live in the United States, Singapore, the United Kingdom, or elsewhere globally, abuse occurs world-wide and it’s the vulnerable adults in this world who are its targets.
Seniors for Sale – I provide this link to Part 1 of the series – “Ann.”
Moving Mom and Dad – or your spouse.
Moving Mom and Dad – Leaving Home is an article from the June/July 2012 AARP Magazine. Statistics on aging are astounding, and scary. “By 2020 some 6.6 million Americans will be age 85 or older.” That’s an increase of 4.3 million from the year 2000. Time to celebrate – right? We’re living longer – and in some cases – thriving in our older age. The reality of the situation, however, is that eventually we’ll need some sort of assistance with our activities of daily living (ADLs) that might require a move to a care facility of some sort.
The stories presented in the attached article describe family instances where emergent circumstances warranted an emergent decision to move a parent into some sort of care facility. The best case scenario, as this AARP article suggests is that you, “dig the well before you’re thirsty.” Nice sentiment – but not always possible.
I have written numerous articles for my blog that address the difficulties the caregiver, and the one needing care, go through when making the decision to choose a long-term care (LTC) facility for a loved one. Below are links to each of those articles. I hope they prove beneficial to you.
Deathbed promises and how to fulfill them.
Caregiving: The Ultimate Team Sport.
Selecting a Senior housing community – easy for some, not for the rest of us.
Adjustment disorder: a long-term care facility side- effect.
Visiting a loved one at a long-term care facility.
Long-term care facility heartache.
More often than not, a senior citizen moving into a long-term care (LTC) facility is doing so under duress. “My kids said they’re not comfortable with me living on my own anymore. Well I’m not comfortable living in this old folks home!”
Sound familiar? It should. I am a LTC Ombudsman in Washington State and I can’t tell you how often I hear residents who provide nothing but negative comments about their living conditions. Regardless of how good the building; regardless of how fabulous the food; regardless of all the fun activities in which the residents participate, they are still not happy because the overriding dissatisfaction of not being in control of where they want to live colors all that they do.
And I agree with them.
Losing control and losing independence – a natural outcome of getting older? Gosh, I hope not. For the most part, a person moving into a long-term care facility has been in charge of their life – managing finances, choosing when and where they want to drive in their vehicle, eating whatever they want, whenever they want – in short, doing whatever they damn well please! Suddenly someone else, regardless of how well-meaning, takes those freedoms away and those choices because they’re not comfortable leaving mom and/or dad alone in their own house.
In my article: “Adjustment disorder: a long-term care facility side-effect,” I talk about the difficulties that befall the elderly as they endeavor to acclimate to senior living. Think about it! Going from a schedule-free life to a regimented one is difficult – whether you’re a young adult going into the military, or a senior citizen moving into an institutional living situation. Both generations suffer greatly during this adjustment period but the adjustment takes longer when you’re in your late 70’s and upward. And don’t forget, if the senior citizen wasn’t the one making the decision – choosing to move out of her home and into a senior housing community – the adjustment period will take longer still.
How can the adjustment period be made easier?
As advocates for residents in long-term care living situations, LTC Ombudsmen emphasize and promote a resident’s right to make choices about pretty much everything that goes on in their new “home.” What a novel idea! Some of the choices that we know are important to residents are:
- Choosing the clothes they want to wear.
- Choosing what time they want to go to a meal. Even if the resident wants breakfast after posted dining room breakfast hours, the culinary staff must make reasonable accommodation and provide some sort of breakfast item for that resident.
- Choosing which activities – if any – in which the resident wants to participate. No one should be forced to go somewhere against their will – that’s called coercion. “Come on sweetie, you’ll like it once you get there.” No!
- If the resident is on some sort of care plan in the facility, the resident has the right to refuse care, even if it might be to that resident’s detriment. When she was living in her own home, she had that right – nothing’s changed – only her environment.
- The resident can even choose to move out of the long-term care facility if she chooses. Don’t forget, it wasn’t her decision to move there anyway. Long-term care housing isn’t a prison – she can leave if she wants to, even if doing so goes against the wishes of the family, and against the advice of her physician.
The bottom line is that residents in long-term care facilities aren’t children who need someone else to make decisions for them. Granted – some residents with major cognitive decline may rely on others, such as a Power of Attorney (POA), to make decisions for them – but even then, that POA should be making decisions that the resident would have made if he/she were still capable of doing so.
Put yourself in your parent’s or grandparent’s shoes. How would you feel if your opinions, wishes, and rights were dismissed? Feels lousy, doesn’t it?
Adjustment disorder: a long-term care facility side-effect.
Think of a moving/relocating experience you’ve had with all of its inherent tasks of purging of items, packing what remains, and leaving all that is familiar as you move into uncharted territory. In your new neighborhood you’re starting all over again to find: new friends; a new supermarket with the best deals; perhaps the best school(s) for your children; a new church; and new ties to the community. Not exactly an enjoyable experience. It took you some time to adjust to your new community and feel that you fit in, didn’t it?
Now imagine doing the same thing as someone who is at least 70 years old with failing health, no family nearby, and perhaps with a compromised cognition level. Vulnerable adults move into a long-term care (LTC) housing environment because of a condition, or combination of conditions, that make living independently no longer an option. Because of this disruptive move, another disorder – adjustment disorder – makes their move a perilous one.
A loss of context in a new environment. In my work as an advocate for vulnerable adults, I had the privilege of hearing a wonderful speaker, George Dicks. At the time, Mr. Dicks supervised the Geriatric Psychiatry Service clinic at Harborview Medical Center in Seattle, WA. He was also a contracted instructor for the University of Washington, teaching courses on Gerontology, Psychiatric Consultation, and Mental Health. He emphasized that residents living in nursing homes and assisted living facilities struggle to look for context within their new environment. For example, context is hard to come by when your daily bath occurs at 2:00 in the afternoon instead of in the morning or evening as was the case prior to the move. And forget about finding comfort in routine because the demands on LTC staff are such that caring for numerous residents on their shift can’t possibly assure a routine on which the residents can rely.
Just providing care doesn’t mean that a staff person is caring. Everyone who moves into a long-term care facility will have difficulties, but those who are cognitively impaired face an especially arduous adjustment. As I previously mentioned, staff are hard pressed to provide individual care to their residents, and oftentimes are poorly prepared to handle the disorders that walk through the door. Just getting through their daily shift is troublesome so trying to learn the habits and routines that are so vital for quality of life of the resident with dementia is a very time-consuming task.
Quite frequently, the only contact a staff person has with a resident is when they are making demands of that resident: “time to take your medicines Mrs. Jones;” “let’s get that soiled clothing changed Mr. Smith;” “open your mouth Mrs. Clark so I can feed you.” Providing for basic needs is not providing care. Why? Because the staff are requiring something of the resident. There is no connection. When a staff person interacts with a resident, absent a provision of care, that’s a better definition of care.
How to lessen the effects of adjustment disorder. Those living in a long-term care housing situation oftentimes feel as though they left all their power, and all of their basic human rights, at the door. They are constantly surrounded with reminders of their condition – all those other residents who look as lost and helpless as they do – and it seems that the only time anyone pays attention to them is when someone is demanding something of them in the form of providing some sort of assistance with their care needs. If every staff person spent just five minutes of non-task-oriented time with each resident during their shift, those residents just might start feeling better about themselves.
- Walk with a resident for a few minutes by simply accompanying them in the hallway and reassuring them along the way.
- Play music the residents like in the common areas and in their rooms – and don’t assume that you know what they like to hear. Take the time to find out what gets their feet tapping.
- When you walk past a resident, greet them, smile at them, just as you would if you were in a social environment instead of a clinical environment. Again, do so even when you’re not providing a care service. Your friendly, heart-felt greeting may just make their day.
- Start a dialogue with residents that allows them to open up to you about who they are; what their lives were like prior to arriving at the facility. If you need to jot down some of their stories so you’ll remember them later, do so and continue the dialogue the next time you see them. Wouldn’t it be a pleasant surprise to a resident when you asked them, “Tell me more about your grandson Charlie. He seems like a real character!” Wow – you were actually listening, and it shows. Now you’re connecting with the resident.
If you are a staff person in a long-term care facility, can you put your grandma or grandpa’s face on your patients/residents faces thereby having a greater incentive to connect with those receiving your care? Or if that doesn’t work for you, do what you must in order to add an element of care to those you serve. Just because you’re helping the resident perform a task, doesn’t mean that you’re providing the care that they really need.
Retirement communities: the good and the bad.
In the April 2012 issue of the AARP Bulletin, two articles caught my eye. The first article, “To be a Bride Again at 100” (attached is the video link) celebrates the marriage of Dana Jackson, 100 years old, to her groom, 87 year old Bill Stauss. This is a love story between two residents of a nursing home in Bowling Green, Kentucky. This nursing home celebrated their love, and their death-do-us-part vows, in such a lovely way. The management and staff of the nursing home exhibited a wonderful sense of community and support of Dana and Bill. Whether they realized it or not, the staff at the Rosewood Health Care Center helped the newlyweds exercise their rights as long-term care residents.
The second article in the Bulletin’s column, What an Outrage, “Barred from a fine dining restaurant,” shines a spotlight on a Virginia retirement community that not only did not exhibit a sense of community and support, but they quite literally violated the rights of a husband and wife living there. When the husband’s care needs required him to switch to the skilled nursing care portion of the retirement community, while his wife remained in the independent living portion of the community, their meals together were abruptly stopped. The wife could continue to dine in the fine-dining restaurant of the retirement community, but her husband was barred from doing so. He and the other sixteen nursing care and assisted living residents were required to eat in their own separate dining room.
Harbor’s Edge retirement community had a couple non-fatal choking incidents involving three of its nursing care and assisted living residents in 2011 so a new rule was put in place segregating the more inform from the less infirm, even going so far as to ban the more infirm residents from attending events where food was served. Keep in mind, residents in this retirement community make a sizable deposit to live there, to the tune of a half million dollars, PLUS a $5000 monthly fee. I guess money doesn’t buy happiness but it sure should have bought these residents the right to eat where they pleased!
The outcome: the Virginia Department of Health was contacted and soon thereafter, the ban was lifted. In Washington State, laws are in place to protect the residents of long-term care (LTC) facilities so that these residents can experience a dignified quality of life. Vulnerable adult residents are guaranteed specific rights by law. Revised Code of Washington )RCW) 70.129.020 Exercise of Rights, says in a nutshell that a resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility…The resident has a right to be free of interference, coercion, discrimination and reprisal from the facility in exercising his or her rights. The remainder of RCW 70.129 further details all the civil & resident rights afforded vulnerable adults in the State of Washington. If in your experience you suspect that someone’s long-term care resident rights are being violated, please contact the long-term care ombudsman program in your state by visiting the attached weblink for the National Long-Term Care Ombudsman Resource Center.
What great, and not so great, experiences have you had relative to long-term care residential living? I would love to hear from you so we can celebrate the good, and expose the bad, for all of our benefit.
You’re Looking at Me Like I Live Here and I Don’t | Documentary about Alzheimer’s | Independent Lens | PBS
You’re Looking at Me Like I Live Here and I Don’t | Documentary about Alzheimer’s | Independent Lens | PBS.
I hope everyone has an opportunity to see this PBS documentary which airs March 29, 2012. What an eye opening foray into the day-to-day life of a person whose own identity escapes them.
Long Term Care Insurance scares me.
insurance, n. A thing providing protection against a possible eventuality. Concise Oxford English Dictionary, 11th Edition; 2004.
Auto insurance, home or renters insurance, and health insurance – we understand these policies and know that more likely than not the need for the aforementioned insurance policies will rear its ugly head in the near or distant future so we pay the premium for said policies, hoping we won’t need it, but sleeping better at night because we have it.
Why is purchasing long-term care insurance such a difficult step to take for me and my husband?
- Unquestionably, it’s expensive;
- Fearfully, companies who offer this product are going out of business left and right and may leave us holding an empty bag;
- Definitely, it’s a real difficult type of policy to understand; but
- Undeniably, the financial need for it can outweigh the cost of purchasing it.
My husband and I have still not made an effort to look into it further. Here are my two reasons based on family experience – both of which tend to contradict each other:
My father’s long-term care insurance policy. My father had a long-term care insurance policy for which he paid premiums for at least 20 years – no small amount of money to be sure. He was diagnosed with Alzheimer’s at the age of 84 and died five years later. His care needs at the retirement facility in which he had lived for 13 years didn’t meet the insurance reimbursement threshold until his final month of life. As with most policies, the insurance holder’s care needs must meet a defined level of care before the insurance company kicks in their assisted living care reimbursement payments. When that happens, the insurance holder no longer pays any more premiums. Twenty years of paying premiums for one month of reimbursement benefit.
My sister-in-law’s long-term care policy. My brother and sister-in-law purchased their long-term care insurance policies when they were in their late fifties. Less than a year later my sister-in-law was diagnosed with early-onset dementia and approximately two years later drew benefits from her policy. A couple of years of paying premiums for what will be years of reimbursement benefit. If that isn’t the good news/bad news of long-term care insurance I don’t know what is!
I have no excuse. I know the devastating costs of long-term care because in my past professional life I worked for a senior housing provider and they represented the Champagne & Chandelier variety of assisted living. But even the generic assisted living providers charge high rental rates and as ones’ care needs increase, so do the care fees. This isn’t avoidance behavior on my part and I’m not squeamish about the subject of health and ones’ eventual death. I’m just finding it hard to take this leap into signing up for insurance, even though it holds the assurance of fending off the potential of total personal financial collapse without it.
How are you Baby Boomers dealing with this subject? If you finally bit the bullet and purchased a policy – how did you finally take that leap of faith?
I AM NOT LOOKING TO BE BOMBARDED BY SELLERS OF INSURANCE AS A RESULT OF THIS BLOG ARTICLE SO PLEASE DON’T GO THERE. But I welcome other constructive feedback for those of us on the brink of making this difficult decision.
Sufficient caregiver training: vulnerable adults deserve nothing less.
Local and Federal governments have more red on their accounting ledgers than black. Citizens balk against any raise in taxes, regardless of how infinitesimal the increase. The same citizens demand more services from their government. How does one get what they need without paying for it?
I’m not a politician – and never will be. I’m not a brilliant person nor do I fully understand all the nuances inherent in government bureaucracies. About this one thing, however, I am absolutely certain: many valuable services that were initially set in place for those considered vulnerable in our society are still desperately needed for even a modicum of dignity and quality of life. Did the needs suddenly disappear? NO. Did the vulnerable in our society somehow experience a miracle and are now fully capable of managing their lives on their own? NO. The needs are still there and the vulnerable in our society are being pushed to the wayside and are slipping through the cracks. Do I like paying taxes? NO. I guess I’m wondering how to generate funds for needed programs without “robbing Peter to pay Paul.” Taking from one program and sliding it over to a different program robs other needed services. If ever there was a Catch-22, this is it.
Let’s look at caregiver training. In Washington State, in the year 1996, caregivers were only required to pass First Aid training, CPR and HIV training, the Fundamentals of Caregiving training (22 hours), and had to successfully pass the State’s criminal background check.
In a Seattle Times article printed January 23, 2000, Push on for more caregiver training, the following statement begins the article:
With a first-aid card and some training about CPR and HIV, you can find yourself a challenging new job caring for the elderly and infirm, bathing them, feeding them, and fielding punches from them. For this you can make about $7.50 an hour. At McDonald’s, you can make more slinging burgers and fries. It’s a wonder anyone cares for the elderly and infirm at all.
The year 2000. For the third time in four years, the Washington State’s long-term-care ombudsman (who is independent of any government agency) pushed for more training for caregivers. “The Legislature and the industry both need to step up and say this is an important key profession…People who take care of human beings are important people.” State bill I-1029 passed which would increase the number of required training hours and implement specialty training for residents with special needs such as dementia, mental health, and developmental disabilities. Implementation of this Bill’s provisions was delayed and set to go into effect March 1st, 2002.
Fast forward to February 2002. Let’s look at another Seattle Times article, Caregiver-training issue causes split in state’s long-term-care community. After the Bill from the year 2000 passed, the Department of Social and Health Services didn’t get the training curriculum revised in time for the March 1st, 2002 implementation so the State Legislature delayed the start-up of the new training requirements to September 1, 2002. Private providers of long-term care – those not accepting Medicaid – would have to foot the bill to provide employee training, most certainly passing the costs along to their residents. Long-term care facilities that accept Medicaid payments would rely on the State Medicaid program to provide the mandatory additional training and the State contended that the budget does not exist to provide the mandated training voted into law from initiative I-1029. Time to go back to the drawing board.
Bear with me. Fast forward to November 2008. Let’s look again at another Seattle Times article, Voters back more caregiver training. In 2008 a revised caregiver training Bill was passed requiring a training increase from 34 to 75 hours for new long-term care workers and required caregivers to undergo a Federal criminal background check. This bill passed overwhelmingly. It’s great that the citizens of my fair State decided that anyone taking care of the vulnerable should be held to a high standard. Oops – in the same voting cycle, initiatives that would have imposed taxes on candy, soda pop, and other piecemeal purchases failed big time. These miniscule, microscopic taxes would have saved vital services for the vulnerable and would have helped the State pay for the “mandated” new training. No money – no increased training – no Federal background checks.
One more time. Fast forward to November 2011. Washington voters asked to boost caregiver training again, Seattle Times. The Legislature delayed the implementation of the 2008 Bill because of budget cuts. And during the voting cycle of 2011, a re-worked caregiver training initiative made it to the ballot once again as Initiative I-1163, right in the middle of an ever-increasing budget crisis, and the Washington State voters overwhelming approved it. Implementation of the new training and background check requirements are set to start in 2012. Lawmakers pushed implementation to 2014 but the good news is that the Legislature won’t be able to delay implementation of the new requirements without a two-thirds majority. As of March 1, 2012 – the Washington State legislature has yet to finalize any enactment of the Bill protecting vulnerable adults; those that the voters of my state approved – and voted for – numerous times since the early 1990’s…stay tuned…
WHAT’S HAPPENING IN YOUR STATE?
HOW IS YOUR STATE PROTECTING YOUR VULNERABLE ADULT POPULATION?
Visiting a loved one at a long-term care facility.
Your Dad lives in a long-term care (LTC) facility and you’ve found that these visits really take a lot out of you and your Dad. You’re bored, your Dad is bored, and you’re beginning to wonder if these visits are even worth it. Do you want some encouraging ideas to make your visits beneficial to everyone involved? Here are some suggestions that might take the hurt out of the equation.
ACKNOWLEDGE THAT THE LTC FACILITY IS NOW YOUR DAD’S HOME.
The longer your Dad lives in this LTC facility, the more it will feel like his home. That’s a hard pill to swallow when you’re accustomed to visiting him on his home turf. His new normal is his 200 square foot (if he’s lucky) LTC apartment. Remember how painful it was for your Dad to move away from the family home to his apartment in the facility? One can not minimize the difficulty of downsizing a lifetime of emotional attachment to a household of personal objects to a mere few that will fit in his small living space. Respect for the remaining space allotted to him will go a long way towards making him more comfortable when you invade that space.
HOW I ADJUSTED TO MY DAD’S LTC LIVING SITUATION.
I would never attempt to offer any advice if I too hadn’t been through what you’re going through. At the age of 84 my father was diagnosed with Alzheimer’s. Dad lived in a Continuing Care Retirement Community (CCRC) in Oregon state. At the time of his diagnosis he was living in a decently sized one-bedroom apartment “on campus” and for a few years was able to function quite well in that space. When I visited from Seattle, it was pretty challenging coming up with ways in which to engage him and make my visit a valuable time for him. He was still active, however, so we went on picnics, took walks, shopped for needed personal items, and our days were filled with purposeful activities. As his disease progressed, however, he moved to the dementia unit of the CCRC and shared a room with another gentleman who also had dementia. Now what? I certainly can’t visit him in his room, and the common areas were populated with other residents who presented challenges to creating a valuable visiting experience for both my father and me. Visits outside the CCRC campus became more and more difficult as my dad’s ability to function outside of his routine rapidly decreased. How could just sitting with him in the dementia unit’s living room make any difference in his day?
IT’S NOT ABOUT YOU – IT’S ABOUT YOUR LOVED ONE.
Well, it is about you, to be sure, but if your loved one’s experience is a good one, chances are your experience will be equally as satisfying. Depending upon your loved one’s executive function, your activity options may not be limited at first. You’re still able to take your loved one to movies and museums. You’re able to go out to dinner and attend family gatherings. You pick your Dad up, he’s happy to go with you, and your time with him is about as normal as it gets. If Dad is physically or cognitively impaired, however, your activity options decrease considerably.
BEING PRESENT WHEN YOU’RE PRESENT.
I think you’ll be amazed at how far a smile and a pleasant attitude will go when visiting your parent or other loved one. You’re of the opinion that you have to be doing, doing, doing to have a successful LTC visit. If being active is a thing of the past, I encourage you to simply be present when you’re visiting Mom, Dad or your spouse. Does he still like to read or watch TV? There’s no reason why he can’t continue to do that while you sit nearby and use your laptop or read a good book. When was the last time you had nothing but time in which to do so? Consider this down-time as some sort of blessing in disguise. Does Dad like certain types of movies – or one in particular – that you can put in the DVD player for his entertainment? Watch that movie with him even though it’s the 100th time you’ve done so. It’s difficult for us to define the movie-watching experience as quality time spent with Dad, but for him it may be just what he needs that day. I know very well how slowly time passes when visiting a loved one whose world has been significantly diminished. But imagine, if you can, being your Dad’s age and unable to come and go as you please. When you visit him, you bring the outside world to him and give the day a whole new meaning.
WHY VISIT DAD IF HE DOESN’T RECOGNIZE ME ANYMORE?
This is one of the most challenging times for a son, daughter (or spouse) to go through when our loved one’s cognitive levels continue to decline. (Please check out other articles on this subject under this Blog’s “Alzheimer’s/Dementia” tab for additional encouragement.) You’ll be doing yourself and your loved one a favor by not trying to force him to recognize you. The Alzheimer’s Association suggests that it is far easier for you to walk into his or her world than it is for him to be present in yours. When you walk into his room for a visit, simply announce yourself, “Hi Dad, Irene is here for a visit.” You don’t even need to qualify your name by saying, “your daughter, Irene.” Your title is not as important as who you are when you visit him. Smile. Speak in a lively tone – not loud, just lively – and let him feel your friendliness and your love. Caregivers can’t give your loved one the love that you have for him – only you can. As difficult as it is to seemingly have lost your identity with him – and it truly is difficult – the fact remains that you are his/her daughter/son/spouse and only you can love him like a family member can.
I sure don’t own the franchise on ideas to employ when visiting at a LTC facility. What has worked for you? What do you suggest? Your ideas may be just the thing that helps someone else weather this difficult time.
Baby Boomers: what topics interest you?
What do you want to read and comment on? I thoroughly enjoy this blogging experience but it’s not satisfying enough for me to have a one-way written conversation. My family would be the first to say that once I get going, it’s hard to shut me up. (As of March 2016, I’ve posted 700 articles.)
But I want to enhance my own Baby Boomer experience with your wisdom, advice, successes, even failures. It’s in those practical experiences that we grow the most.
So I sincerely covet your input as to what would draw you to my “Baby Boomers and More” Blog more frequently. What topics interest you enough that you would provide comments and even contribute your own articles that I’ll press/link to my own Blog site?
Truth be told? This is not just my site – it’s out there for everyone. I hope you’ll be candid and honest with your input. Bring it on – I’m good and ready for your Baby Boomer Blog ideas.
8 Rules for New Caregivers
Caregiving is one of the hardest jobs any of us will ever undertake. Please take time to read this article that I have added to my Blog that originally came from an AARP posting.
Be an advocate for your aging loved one.
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.
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.
Avoiding the pitfalls of selecting Senior Housing.
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.
- ← Previous