Since Baby Boomers and their family members face the possibility of arranging long-term care (LTC) housing for a loved one, or will be on the receiving end of long-term care, I am providing information related to what one can and should expect while living in a LTC setting. This will be a multi-part series wherein I provide a real-life scenario, and the Code of Federal Regulations (CFR) citation applicable to that scenario. Since I live in Washington State, I will also provide the applicable State statute, and I encourage those living in other states to do an internet search for “long-term care residents’ rights in your state” in order to locate your local laws. All scenarios assume that the resident in question is cognitively able to make his or her own decisions.
My kids aren’t the boss of me!
I’m so excited, my soaps are about to start and I have the whole afternoon to myself. I’m looking forward to seeing how they’re going to get rid of Sami. She’s been on Days of our Lives since she was a young teenager; that’s a long time in soap opera years. I’ll just wheel into my bedroom, get my knitting basket, and set myself up in front of the television.
All right, now I’m ready; it’s time to tune in!
There’s a knock at the door, drat, right when my first soap is about to start. “Come in!” Oh no, it’s that perky activity person. When they interviewed candidates for her job they must have had a perkiness contest as one of the criteria for hiring. I’ll see if I can get rid of her real quick-like. “Hello, Ruby, what can I do for you today?”
“What can you do for me? Don’t be silly, it’s what I can do for you that matters, Mrs. Tanaka. We’re showing a movie in the main living room that I’m sure you’ll like. It’s called, 101 Dalmatians, won’t that be great?”
A movie about dogs instead of my soap operas? Not going to happen. “That’s okay, Ruby, I’m happy just watching my TV shows. Maybe some other time.” Now I’ve gone and done it, Ruby looks baffled, not sure how to change the course of her task.
“Mrs. Tanaka, I was told to wheel you to the living room for the movie and not take ‘no’ for an answer.” She pulled a piece of paper out of her smock’s deep pocket and showed it to me. “Look right here. It says, ‘The family has requested that their mother not spend an inordinate amount of time in her room and that she attend at least four activities per week.’ It’s already Thursday and you haven’t even been to one event this week. We have to make up for lost time.” She bent over my wheelchair, unlocked the brake and positioned herself behind it.
“But I don’t want to see the movie, I want to watch television. I love my soap operas and today’s the last day Sami is going to be on Days. Please, I don’t care what my children have requested, I’d really rather stay in my apartment.”
Ruby leaned over, picked up my yarn and needles, and placed them in my knitting bag on the floor. “Come on, I’m sure you’ll like it once you get there.” Pushing with all her might, Ruby escorted me out of my room, thus bringing an end to all my plans for the afternoon. Those children of mine have no right meddling into my private life. “Ruby, whose opinion matters most: the person who lives at this assisted living facility, or those who don’t? This isn’t fair; don’t I have rights?”
Mrs. Tanaka was coerced to go somewhere she didn’t want to go; because she was confined to a wheelchair, her ability to stand her ground by refusing to attend an activity was compromised. Additionally, although this resident can get around her apartment in her wheelchair, wheeling herself long distances is very problematic for her; as a result, once in the living room she would require assistance to return to her room, rendering her a captive audience.
42 CFR 483.10 The resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility. A facility must protect and promote the rights of each resident, including each of the following rights:
(a) Exercise of rights.
(1) The resident has the right to exercise his or her rights as a resident of the United States.
(2) The resident has the right to be free of interference, coercion, discrimination, and reprisal from the facility in exercising his or her rights. See also, Washington State law: RCW 70.129.140
Mrs. Tanaka has the right to make choices that are important to her. She wanted to watch television – not attend a kids’ movie. Regardless of what her adult children want, Mrs. Tanaka’s rights trump theirs.
42 CFR 483.15 Quality of Life A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life.
(a) Dignity. The facility must promote care for residents in a manner and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality.
(b) Self-determination and participation. The resident has the right to:
(1) Choose activities, schedules, and health care consistent with his or her interests, assessments, and plans of care;
(2) Interact with members of the community both inside and outside the facility; and
(3) Make choices about aspects of his or her life in the facility that are significant to the resident. See also Washington State law RCW 70.129.140
Note: there are even more legal citations applicable to the above scenario; a quick search of 42 CFR 483 on the internet provides all laws relating to long-term care residents rights. If you or a loved one need assistance regarding LTC residents rights, contact your local LTC Ombudsman office which can be located at the National Long-Term Care Ombudsman Resource Center.
Part 2 of this series will deal with the illegal practice of requiring residents to sign a Waiver of Liability prior to being admitted to a facility.
I read a fabulous article in the “Home” section of today’s Seattle Times newspaper. It’s a throwaway section that I always read before I toss it into the recycle basket.
All of us are getting older – there’s no cure for that other than not growing older by leaving this earth before you’re ready – so where are all of us going to live – especially Granny and Pappy who can no longer safely live on their own?
Long-term care (LTC) facilities have priced themselves out of most households’ bank accounts and the alternative solution of having grandparent sitters is cumbersome and expensive in itself. What’s an adult child to do? If you have space on your property to have a guest house newly built or better yet, if you’re willing to turn your sunporch or guesthouse into accommodations for mom and dad, the original outlay of funds will pay for itself because you will have avoided the need for a facility’s ultra-expensive long-term care services.
One company that makes the pods spotlighted in the Seattle Times’ article is called Home Care Suites. Disclaimer: I am not advocating for this company’s product. I am merely pulling information out of the article and presenting it to the reader so you can do research that applies to your situation and your budget.
The pods made by this company range in size from 256 to 588 square feet with prices ranging from $42,000 to $83,000. This is no drop in the bucket but let’s consider the cost of facility care. Genworth (who sells long-term care insurance) states that the average monthly fee for assisted-living (AL) was $3,300 in 2012. I think that’s a very naive figure based on my experience of having worked in the LTC housing industry. Maybe Genworth’s lower number is just the cost for monthly rent – but what about care services? Cha-ching!!! Now you’re looking at double that amount and the cost will only go higher as care needs increase. But even at only $3,300 per month, that amounts to $158,400 for a four-year period. See how do-able the pod concept seems now?
Many of the AL service needs are simple monitoring of a resident – tasks that you can do for your loved one: waking them up, helping them get dressed, a certain amount of medication assistance, meal provision. Many seniors living in AL facilities don’t need the massive hands-on care of bathing assistance, toileting services, physical therapy, etc. I know for a fact that if a family member has the time – and a little patience – they can provide these lower acuity services on their own for quite some time before securing hands-on medical care for the elder member of their household.
Skipping ahead to after Grandma and Grandpa/Mom and Dad have passed on, you now are left with an added structure on your property which you can transform back into the porch or game room of its earlier existence, or simply leave as is as a guest room that may accommodate someone else in your family. I have to believe that your initial investment in constructing a pod is an investment that you won’t regret. And don’t forget – the costs for such a project aren’t necessarily out of your own pocket. Perhaps Grandma or Grandpa are willing to pull some of their savings out from underneath their mattress and contribute to the cost of this alternative living arrangement that would certainly be more attractive to them than a lengthy stint at an AL facility or nursing home. Just saying.
Bloomberg Businessweek posted a provocative article, Sex Among Dementia Patients Spurs Call for Policies, that will no doubt get the attention of professionals, and family members alike. The attached article is well-worth the read, and I have a few comments of my own to add.
I acknowledge that sexual activities most likely occur in every long-term setting out there. Consenting adults – even those with varying degrees of dementia – need touch and physical connection. I think it’s fabulous that in spite of the limitations brought about by cognitive impairment, human beings still maintain the desire to give affection, and receive affection. In some instances, affection may simply be expressed with hand holding or sitting next to someone, hip-to-hip. Or perhaps a hug and a kiss are involved. All of these actions are perfectly innocent without harm as long as all touching is consensual.
Some residents may express their need to give and receive affection with more intimate sexual activities, so if both parties are willing and able, I think intimacy is an important part of their well-being.
What about those patients who are already married to someone else?
It takes an understanding and flexible spouse or partner to overlook the intimate activities of their cognitively impaired loved one. The commitment made between the two parties years ago is a commitment that still resides within the deep recesses of that person’s being – but it’s a commitment that can not be drawn upon and reaffirmed because of memory impairment. (I think it’s important to not assume that adulterous motivations are in play here.) Marriage itself may be a concept that is no longer understood by the patient, and as is oftentimes the case – the visiting spouse exists as a friendly visitor, not the wife or husband that the patient used to know.
I can’t predict how I would feel if similar circumstances came my way in the future – my husband and I have not fallen into the cognitive impaired category – yet. And you don’t have to agree with what I’ve stated above. The sentiments I have provided come from my own personal beliefs, and from the perspective of having both worked in long-term care in my past, and having had family members who have lived in long-term care housing.
One last thing: As dementia care specialist Teepa Snow stated in the attached article, “No matter what you do, somebody’s going to see you as wrong.” The issues of sex and intimacy touch many personal, religious, and ethnic biases and beliefs. There are no completely right or completely wrong answers. I’m simply thrilled that the long-term care industry has stopped pretending that geriatric sex isn’t happening, and that they are no longer treating it as a taboo subject. I take comfort in that fact.
I like the above article and every single article that mentions some sort of steps moving towards diagnosis and treatment, even steps that are stunted right out of the block.
Stillness gets us no where. Although limited, at least this article discusses some progress towards shutting down Alzheimer’s and other dementias. During a time where very little good news is forthcoming relating to this disease, I’ll take anything – thank you very much.
I’m attaching the above article from a fellow blogger. He, like so many of us, find it difficult to fathom how anyone would take advantage of a vulnerable human being. The very unsettling fact, however, is that incidents of abuse of the elderly occur and are far too common.
Whether the abuse is instigated by family members upon the elderly in the privacy of their home, or by “professionals” in long-term care settings such as assisted living facilities, nursing homes, or group homes – it happens. Oftentimes such incidents go unchecked for months, or years, and are discovered only when a death occurs, or when someone with a conscience steps forward and complains to the authorities. Those being abused either don’t have the ability to complain or they fear that doing so will make matters even worse for them.
Worse? Residents fear that if they complain, they’ll be thrown out of the place in which they live – the place in which they receive the abuse. I know that you and I are quick to say, “Fantastic! What a great relief that would be if the person no longer lived with his or her abusers!” We say that because we have not experienced what they have experienced; we have not heard the threats and vicious statements directed towards these vulnerable human beings. These violated human beings don’t understand that abhorrent behavior is not normal because it’s all they’ve known.
These are older human beings who at one time were innocent children showing up on their first day of school; worried teenagers fretting over what to wear to the prom; young adults heading off to college and/or a career; husbands and wives, moms and dads … people just like you and me. Now they’re nothing but broken, barely alive bodies who have been treated worse than a junk yard dog.
That makes me mad.
An insurance agent from a large, widely-known insurance company recently told me that 50% of all applicants for long-term care (LTC) insurance are rejected. Boy, with those statistics, it’s hardly worth pursuing, knowing that the hurt of rejection might be in your future.
John Matthews, Caring.com senior editor and attorney gives all of us a reality check:
“No one has a ‘right’ to buy long-term care insurance. That results in insurance companies refusing to sell policies to people they think are likely to collect on the policies soon, or who might collect for a long time. If an insurance company thinks the odds are that it might not make money on you, it won’t sell you a policy.”
WOW – that’s encouraging isn’t it?
While doing research for this article, I found the information provided by insurance brokers about LTC insurance to be very enlightening. Apparently many LTC insurance companies will accept you as an insured if you have had open-heart surgery, but will balk at covering someone who has arthritis. Why you may ask? I was told it is because the insured with heart issues will die before needing benefits whereas the person with arthritis will most likely become disabled and therefore cost the insurance company too much money in benefits payout.
Wow – that’s depressing, and somewhat maudlin, isn’t it?
I stand by my earlier article, Long Term Care Insurance Scares Me. Insurers are trying to sell a product for which so few are eligible. I thought I was scared before. Now that I’ve done my research, I’m petrified!
Please share your experiences trying to obtain LTC insurance. Whether you were accepted or rejected – we want to know. If you were rejected and appealed the insurance company’s decision – we REALLY want to hear about it.
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.