I think all caregivers end up on a guilt trip at some point, but this blog post from gerontologist Dr. Elaine Eshbaugh is another good reminder to let go of that guilt. She discusses the negative emotions that many family members feel when placing their loved ones with dementia in a nursing home, and why caregivers shouldn’t be so hard on themselves.
And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.” I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.
via Nursing Homes and Guilt Traps in Dementialand — Welcome to Dementialand
Whatever your opinion of CNN, I give them kudos for the investigative report, “Sick, Dying and Raped in America’s Nursing Homes.” This is a subject few want to discuss, but it is happening more often than one realizes. I am grateful for the network for shining a spotlight on these crimes that have often been swept under the rug.
The accounts are harrowing and sickening, but I encourage anyone who has a loved one in a nursing facility or is caring for an aging relative to read this report. Armed with knowledge of the despicable acts that have occurred at these places, you will better be able to protect your loved one from such crimes.
Don’t expect the facility management or even law enforcement to be much help. Nursing homes are reluctant to admit wrongdoing, as it can open the company up to lawsuits and cause them to lose precious Medicaid and Medicare funding. Law enforcement claims their hands are tied, as residents with dementia make unreliable witnesses. (To this latter defense, I counter, what about infants and toddlers? They can’t provide detailed accounts of abuse either, yet those cases more often result in charges and convictions.)
Be vigilant, and don’t be afraid to demand an investigation if you suspect abuse of any sort. While I am a strong caregiver advocate, I have no sympathy for those who prey upon the elderly. Yes, the pay is low and the job is grueling, but there is absolutely no excuse for abuse of any sort. Can you imagine how frightening it would be, to be bedridden, perhaps losing your mind to dementia, and then find yourself attacked in the middle of the night by a caretaker? I’m even more glad now that I quit my job so that I could visit my mother each day while she recovered in the skilled nursing facility. But not everyone can do that, nor should we have to.
We must demand better protections and more accountability for nursing home residents. As one heartbroken daughter said, the nursing home worker who raped her 83-year-old mother with dementia stole her last shred of dignity. He received an 8-year prison sentence after pleading guilty to third-degree sexual assault. While that was a longer sentence than some of the other rapists discussed in the CNN report, he had been accused of similar crimes before, but was never charged. That’s why it’s so important to fight for the protection of our loved ones, because we may be able to prevent future crimes against one of our most vulnerable populations.
Anyone who has spent any time in a hospital, whether as a patient or a caregiver knows that seeing the doctor is like finding the holy grail. I remember endless hours just waiting for the elusive doctor to appear, just so he could take a cursory glance at my mom or dad, flip through the chart, and then provide the signature we’d been waiting all day for. This is especially frustrating during hospital transfers.
A recent University of Missouri survey of that state’s nursing home staff members found that there is poor communication between the doctors at transferring hospitals and physicians on staff at the admitting nursing homes. The survey also found that orders are often incomplete and difficult to read. The transfer process can take hours, creating a frustrating experience for both staff and families.
I wrote recently about the guilt I felt about Dad’s last minutes in this world. His DNR order had not transferred from the hospital to the skilled nursing facility, so the nursing home staff were legally required to take all measures to save his life when he collapsed in the shower. The result of that failure: my dad suffered broken ribs as he died.
The blame for this failure is not just on the doctors, hospitals and nursing homes. As family members for loved ones who are ill, we become patient advocates. I remember wondering if the DNR order for my dad had transferred, but I never inquired with the staff at the skilled nursing facility. It had been so difficult to get Mom to agree to the DNR at the hospital, I frankly did not want to deal with that drama again. I hoped Dad would pass quietly on his own, but as many of you know, that often doesn’t happen.
So yes, as patient advocates we need to demand better communication between the hospital staff and nursing home staff. But we also need to check behind them, and then double-check, to make sure medical care orders are recorded properly. Dealing with these issues may be frustrating, but it is much better to know that you tried than to have to live with a lifetime of regrets.
Data released by the Centers for Medicare & Medicaid Services found that antipsychotic drug use in nursing homes has declined 9.1 percent for the first quarter of 2013. In 2010, over 17 percent of nursing home patients had daily doses exceeding recommended levels. The CMS launched the National Partnership to Improve Dementia Care last year and hopes to reduce antipsychotic drug usage by 15 percent by the end of 2013.
The overuse of antipsychotic drugs in nursing homes, especially to sedate dementia patients is an issue that strikes home for me. I watched my father suffer the consequences of being kept in a zombie state on these drugs. While I can’t know if my dad suffered while on these medications, my mother certainly did as she visited my father in this drugged state on a regular basis. My father only showed minimal aggression which probably could have been treated with behavorial therapy or milder drugs with less side effects. The main reason he was so heavily drugged was because like many dementia patients, he wandered.
I do feel for the understaffed, overworked and underpaid nursing home staff, who have no doubt found it easier to give patients a pill to keep them from becoming another problem to deal with. There is no easy solution, but filling helpless people full of drugs is not the answer.
Let’s hope the CMS initiative continues to be successful.
The Alzheimer’s Prevention Initiative is seeking those willing to talk about why they signed up with the registry. As I indicated that I would be wiling to speak out for the cause, I started thinking about my reasons for being an Alzheimer’s awareness advocate. The obvious reason is because of my father’s battle with the disease.
But I also hope to encourage others to not make the same mistakes I made. #1: The rare visits. If I could go back in time, I would have visited more, both when Dad was still at home and when he moved into the nursing home. #2: Being uncomfortable around Dad’s unpredictable behavior. If I had it to do over again, I would tell my former self to get over it and embrace the now, instead of regretting that Alzheimer’s had stolen much of Dad’s former self.
It got me to thinking about one aspect of Dad’s care that I never really thought about before too much. Wonder if Mom and I had somehow managed to keep Dad at home, instead of him being transferred to the nursing home for the last year of his life? I most likely would have had to quit my job, but hey, a year and a half later, I quit my job to take care of Mom. Maybe somehow with home health care, we could have managed Dad at home, even as his Alzheimer’s progressed.
This is one aspect of Dad’s care that I don’t regret. I think the stress of trying to care for Dad at home could have broken our family apart. And while I was not fond of the medications Dad received at the nursing home that turned him into a zombie, at home, he may have refused to take any medications, and who knows if those angry outbursts would have become more violent and dangerous?
I know there are many families who do keep their loved ones with Alzheimer’s at home and care for them until they pass away. I admire and respect that choice 100 percent. I think family caregivers need to receive more financial and community support. But on the other hand, I also respect the choice of placing your loved one in a good facility, where they can receive the supervised care they need.
One suggestion I would make
I found this article about the steps a dementia care center took to reduce the amount of middle of the night wandering by their dementia patients very interesting. The solution was simple and not nearly as expensive as medication. They simply offered the wandering residents snacks (a mix of naughty and healthy food) and the midnight snacks really seemed to curb their wandering tendencies.
I’ve written many times before about how Dad would wander at the nursing home. He was in a secure dementia care wing, so he couldn’t get outside, but he could still fall, which was the concern of the nursing home referred to in the article above.
When Dad wandered, sometimes he would have to be lured back to his room by a treat. One time it was a lollipop. Another time it was a piece of chocolate. The small bit of sweets seemed to calm Dad’s wandering spirit, at least for that night.
As the article mentions, the staff provided safe snacks for their diabetic dementia patients as well. I fully support care centers such as these that get creative in trying to accommodate their dementia residents. Offering snacks and the cleanup involved creates a bit more work than just handing out pills, but there are some centers that actually care about quality of life, versus just trying to make patients into “trouble free” zombies.
We need to encourage more of these proactive care centers in our communities.
It’s been 10 months since Dad’s death. It’s hard to believe so much time has passed, and all of the events concerning my Mom’s health that have taken place since then.
Recently, I walked by what was once the assisted living facility that Dad stayed at oh-so-briefly beginning around this time last year. He was so sick by then that I don’t think he realized how close he was to home. The owner of the facility was not well-liked in town. It was a big struggle for her to get approved to open the 3-bed facility, and she only lasted in town about a year before she had to close.
The window on the right was where Dad’s room was at the assisted living facility.
I visited Dad’s room once there, when he was sick in the hospital across town. The building was kind of run-down and looked like it could have once been a medical office or business of some sort, so it did not have a homey feel to it all. It was chilly and a bit damp. They had ordered him a new bed to prevent bedsores. The owner was trying to find a chair for the room so Dad could sit in it when he returned.
I don’t know if she ever found that chair, or if he ever set in it. He returned back to the facility for a brief few days before he landed back in the hospital, even more ill than before. He then ended up in Albuquerque, where he eventually died.
The space where the assisted living facility used to be is undergoing an extensive renovation. It looks like the insides are being gutted. I don’t know what’s going to replace the facility, but I’ll always remember it as one of Dad’s last homes, no matter how brief his stay was there.
This time last year, Mom was getting ready to move Dad closer to home. Dad was in the latter stages of dementia, but still ambulatory. He had fought a few mystery infections over the summer, but there was a glimmer of hope, that at least Mom would be able to visit Dad more often.
Of course, those hopes were quickly dashed. Those infections came back with a vengeance, and whatever medication the nursing home used to treat the symptoms caused Dad to have a very severe reaction. It was something that he never fully recovered from.
So as I watch the leaves fall from the trees as the fall season takes hold and transforms the world around me, I’m thinking about Dad entering the last seasons of his life last year. I remember the trepidation I had in my heart, worrying about the nursing home move and the impact it would have on Dad’s well-being. I had no idea for the roller coaster ride in store for me.
This year I’m on a different roller coaster ride of emotions, as my mom is now the one sick. You just truly never know what a year will bring.
So Mom had to go on antibiotics for a tooth infection, and it seems to be causing her G.I. issues that are manifesting themselves through her colostomy bag. This is to be expected, as antibiotics are known for causing side effects like that. I’m going to check with the home health agency to make sure probiotics are safe to give her.
Mom of course is depressed about the prospects of a colostomy bag for the rest of her life, and the lack of control she feels it presents. But the flip side isn’t always pretty either. Dad lost control of his bladder and bowels as his dementia took over. This manifested itself once he was in the nursing home. On my first visit, he would still try to communicate that he needed to go to the bathroom. By my second visit, he was completely incontinent.
One of the most painful memories I have of Dad’s stay at the nursing home was the call I got from one of the nursing assistants. They told me Dad had been taken to the E.R. This was nothing new by that point. I asked if he had fallen again. No, the staff member said. He had gotten into a fight with another resident. Dad had went into the other resident’s room, ripped off his diaper, and defecated. As one might expect, the other resident was not too happy. He hit Dad as he tried to get Dad out of his room.
Losing control can be a mental or physical thing, and sometimes it’s both. Mom is mentally aware and the loss of physical control is hard for her to deal with. I’m not sure if Dad realized the abilities he was losing rapidly to Alzheimer’s. It’s again one of those terrible mysteries that has to be buried with Dad.
Dad spent about 10 months at the nursing home before he became ill and landed in the hospital, then was transferred to a skilled nursing facility where he died.
Mom spent just over six weeks at a nursing home. She still talks about the place like it’s a second home. She knew all of the workers and residents on her wing by name. She even talks on the phone with her former roommate from there.
Thanks to Mom, I knew every detail about the nursing home operations and was kept updated on all of the nursing home gossip.
Dad and I at the assisted living facility, March 2011.
It just struck me recently how little I knew about Dad’s experiences at the nursing home. Almost all of the information gleaned from his stay was from third-party sources: nurses, aides and my mom. By the time Dad entered the nursing home, he wasn’t communicating that much. What we did learn from Dad directly was that he had a falling out with his roommate. (Mom also had a falling out with her second roommate; nursing homes are not much different than high school when it comes to petty squabbles!)
On one of my visits to Dad’s nursing home, he told me which residents couldn’t be trusted. Unlike Mom, who was a social butterfly at her nursing home, Dad seemed to be a loner who didn’t interact with fellow residents. Without the dementia, I’m not sure how Dad would have reacted to having to stay in a nursing home. I think he would have been okay as long as he could have his smoking breaks!
It’s interesting to see my parents go through somewhat similar experiences (emergency surgery, long hospital stay, nursing home) but react in such different ways. I just wonder what stories I will never know about Dad’s stay at the nursing home.