Long-term care: squeaky wheels and raging forest fires
Although now retired, over a twelve-year period I worked in long-term care (LTC) wearing three different hats:
- My first job in this industry was in the corporate office of a very fine assisted living and memory care company. In time, I decided to work in one of the company’s facilities so I could spend more time with the residents and families who chose our company for their LTC needs;
- When I left the company, I took several years off to care for my father who had Alzheimer’s disease. A few years after his death, I became a certified long-term care ombudsman for the State of Washington – an advocate for vulnerable adults living in LTC settings;
- Concurrent with my ombudsman work I became a trained Alzheimer’s Association caregiver support group facilitator, providing a listening ear to those on the caregiving path.
Given all that experience, I’ve seen and heard of many unfortunate and nasty occurrences where residents and patients were denied the basic rights each living person should expect to receive, especially those dependent on others for their well-being and quality of life.
I’m sorry to say that some nursing homes, assisted living/memory care communities, and adult group homes do not employ sufficient staffing to meet the needs of their residents. I can confidently say that the government agencies that oversee the LTC industry are also understaffed. When complaints are called in, those government employees have to apply grease to the squeakiest wheels and must turn their fire hoses on the most out of control fires in their case files.
That’s where you and I come in.
We must be the squeakiest darn wheels we can be so our complaint(s) are attended to.
We also need to be the hottest, most devastating fire imaginable so that our vulnerable loved one’s rights are respected.
One grievous example. This is just one example of common issues that arise in LTC settings. The complaint process I mention later in this post provides a good starting point when issues arise.
Nursing home call lights are being ignored so that residents/patients are left to defecate and urinate in their adult sanitary garments on a routine basis. Not only is such an act demeaning to the poor soul with no option but to let go of his/her bodily wastes, but said wastes are sure to cause skin breakdown and a urinary tract infection that is not only extraordinarily painful but can also be life-threatening.
What does the family member/good friend do about this indignity? They need to complain vehemently to the administrator of said facility and when she/he does nothing or very little, family and friends contact the local area’s LTC ombudsman program. This website will direct you to ombudsman resources right where you live: National Long-Term Care Ombudsman Resource Center.
Your local ombudsman program will investigate, work with the facility’s staff, and if need be, get the full force of the law to come to the defense of those in need. State ombudsman programs are staffed by paid and volunteer employees, therefore their staffing levels are usually higher than many government agencies. These ombudsmen all receive the same extensive training required for such a vital role. Once you’ve reached a dead end at the facility, ombudsmen are your most active line of defense. They are passionate about what they do and they will ceaselessly advocate for you and your loved ones. Their proximity to appropriate resources and their intimate knowledge of residents’ rights laws makes them an approachable and viable alternative for the common man’s (yours and my) needs. Caveat: if you suspect criminal activities such as physical or sexual assault law enforcement needs to be immediately involved in the matter. Additionally, severe lack of care that endangers the lives and well-being of adults more likely than not will also require law enforcement involvement.
Adults in long-term care settings are a reflection of you and me. By that I mean they were once active and self-reliant adults, just like many of you reading this piece, but they now find themselves unable to fend for themselves and need you and me to step in for them. Imagine, if you will, being in their shoes, unable to speak up for yourself. If you or I ever find ourselves in a similarly vulnerable situation, wouldn’t you want an advocate to step in on your behalf?
Advocacy for vulnerable adults falls on all of our shoulders. You can make a difference in the life of your loved one. Won’t you please step up to become their most important advocate?
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.