I wrote this article five years ago and I’m posting it again today because it is one of the most viewed posts on my blog. Financial figures are five years old so current, 2018/2019 figures will be considerably higher.
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.
Were you eating breakfast in bed at the time?
Or perhaps while sitting in the easy chair next to your bed, you tried your very best to ignore the urge to purge … but you couldn’t wait any longer for someone to assist you so you let it all out, leaving you in a shameful way, sitting in a mushy pile of excrement while a stream of urine puddled at the base of your chair.
Welcome to the life of a vulnerable adult living in a nursing home. From coast to coast across the United States skilled nursing facilities (SNF) are filled with adults needing the greatest amount of assistance with their activities of daily living (ADLs) – toileting is one of those ADLs.
The following true scenarios occurred recently at a nursing home in a Seattle suburb, and at a similar facility in a suburb of San Francisco.
A man who is fully reliant on mobility assistance pushed the call button near his bed to register a need for assistance. In this case, he needed to go “Number 1” and “Number 2” and had the audacity to require assistance while the staff was busy attending to other residents’ needs – but not his needs. When a staff person finally entered his room an hour later, she did so to simply indicate that she didn’t have time to take him to the bathroom so he should just go in his pants.
A woman equally as vulnerable needed the assistance of a staff person upon waking in the morning and – knowing that breakfasts were brought around to the rooms at 7 a.m. – the 91 year old started to press her call button at 6 a.m. hoping to have her morning pee prior to the arrival of her breakfast tray an hour later. That “luxury” was one that would not be afforded her; instead, a caregiver brought a breakfast tray to this patient in the seven o’clock hour and when the patient asked if she could receive help to the toilet prior to eating her breakfast, the employee told her to just go in her pants because no one had time to help her at that moment.
I can’t help myself – here’s another incident: A staff person helps a woman to the toilet first thing in the morning. The woman who is clothed in a lightweight nightgown finishes using the toilet and is ready to receive assistance back to her bed – but lo’ and behold, the staff person forgot to place the call button within close reach of the patient so she is not able to alert someone of her desire to go back to bed. Enough time has passed that by this time the patient is shivering and screams for help – screams that went unnoticed for a quarter hour. In desperation this elderly woman somehow managed to lean far enough forward to push over a metal trash pail which she then kicked repeatedly until someone finally arrived to see what all the commotion was about.
These stories don’t paint a very pretty picture do they? They depict a low quality of life that no one deserves.
What does Quality of Life mean to you?
- Eating at fine dining establishments?
- Having a clothing wardrobe that rivals the catwalks of Paris?
- Driving in a luxury vehicle that provides amenities previously only found in limousines?
For most of us, quality of life boils down to leading a dignified existence in which we are allowed to take advantage of the basic necessities of life. For me, those necessities should include a safe living environment, sustenance, the inclusion of loving family and friends in my life, the freedom to make choices about matters that are important to me, and being on the receiving end of respectful behavior from those with whom I come in contact.
The most vulnerable among us should expect no less than those basic necessities, but “the system” isn’t working to guarantee those basics. Try to imagine, if you will, your own grandparent, parent, spouse, partner, or other family member in any one of the above scenarios. How comfortable are you with that type of day-to-day existence for them? You’re not comfortable at all – as a matter of fact you’re feeling a bit uneasy about this whole subject matter. I’m sorry to place doubt in your mind about the care your loved one is receiving but I’ll just bet that you need to get out of the comfort of denial you’ve been enjoying and into the eye-opening role of resident advocate.
Lack of caring = lack of care. Nursing home management is a tough job to do correctly, but I know it’s possible because there are some reputable and well-run facilities out there – not perfect by any means, but fairly acceptable. So yes, some nursing facilities employ stellar care staff but there are also those employees who just don’t give a damn. “I go to work. I go home after work. I get paid. What more do you want from me?” Caring – that’s what we want. You’ve chosen to work in this particular type of environment so don’t act like you didn’t know what you were getting into. Withholding proper care for those who have no recourse but to depend upon you is not only unfair, but it’s illegal. And how about answering these questions about your own aging prospects: Do you think you’ll somehow skip the journey into old age? Do you not realize that you too will be as old as the patients whose care is entrusted to you? What type of care will you hope to receive? Does it resemble any of the scenarios I’ve illustrated above – or are you under the impression that you’ll be at a “Champagne and Chandelier” type of place where you’ll be waited on hand and foot?
Not gonna happen.
This article just scratches the surface of the sub-standard care that can be found in nursing facilities. I only mention the toileting issue because it’s been front and center in my experiences with some of my acquaintances lately. One place to start getting some positive traction where these matters are concerned is the National Long-Term Care Ombudsman Resource Center where you’ll find links to advocacy programs in your state. Call those local representatives and report any concerns you may have about how your loved one is being cared for, or not cared for, in their nursing facility, assisted living facility, or group home.
If you act on behalf of your loved one, you’re also acting on behalf of everyone else in the facility because trust me – your mom isn’t the only one being neglected on her nursing home floor.
The next morning, the nurses bathed her, fed her a tasty breakfast of an omelet, sausages, and pancakes, and set her in a chair at a window overlooking a lovely flower garden.
She seemed okay, but after a while, she slowly started to lean over sideways in her chair. Two very attentive nurses immediately rushed to her side to catch her and straighten her up. Again, she seemed okay but after a while, she started to tilt to the other side. The nurses rushed back, and once more moved her upright. This went on all morning.
Later the family arrived to see how their mother was adjusting to her new home.
“So Ma, how is it here? Are they treating you alright?”
“It’s pretty nice here,” she replied, “except they won’t let me fart!”
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.
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?
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.