Have you felt like a number instead of a person at your HMO or heath provider? What happened? Frustration? What about vulnerable seniors who may or may not have an advocate at their doctor and hospital appointments? If sane adults can’t advocate for themselves, how can a senior with dementia?
A few weeks ago, I went to my HMO (Kaiser) for a simple endoscopy procedure. It was a 5-minute procedure that required me to be under anesthesia in a twilight state. Anesthesia has not always been my friend. So I came armed with all my previous anesthesia experiences (the good and the bad). The doctor was informed of my concern through the nurse. The doctor acknowledged my concern (relief on my part) and said she would give me the same twilight anesthesia as a recent colonoscopy. I agreed to this, because it had been a good anesthesia experience for me.
Well, I awoke after the procedure to a nightmare of nausea and another bad anesthesia experience. A week later, my husband compared the anesthesia of the colonoscopy with the anesthesia of the endoscopy. Low and behold, they had given me 25 extra milligrams of Demerol for my endoscopy. That was not what I agreed to with my doctor. Why would they give me more than necessary? Was it because I was on a conveyor belt of medical procedures for that day? When I shared this experience with others, a couple of friends shared more stories.
A coworker was given anesthesia during a colonoscopy and felt them begin the procedure. The medical team jumped when she said that she was still awake. Then they gave her so much anesthesia that it took her three weeks to recover.
Another friend was given 50 mg of a steroid, when it should have been a 10 mg dose. The doctor continued to overdose my friend for three months. My friend is still feeling the affects of being overmedicated. It was determined my friend never needed the steroid in the first place but they have to slowly wean him off the steroid. It takes months to do this.
My own mother-in-law was given psychotropic medications in the emergency room. Amy had to lie on a gurney for three days because there was no room for her in the psych ward. She has still not recovered from what they did to her. Psychotropic medications do not mix well with dementia.
My mom with dementia went to the hospital for abdominal pain. They wanted to do an exploratory surgery. We (my family) said no to the surgery because our mom has dementia. The doctor understood, because my mom could lose more of her memory going under anesthesia. He did not convey our wishes (no exploratory surgery) to his team. When I went to visit my mom at lunchtime, she was not in her room. It turned out they were prepping her for surgery. My husband and I raced to that floor of the hospital to stop them. We got there in the nick of time. The doctor profusely apologized. Really?? The POA says no surgery and the HMO is going to do it anyway? Ridiculous! It turned out she had a urinary track infection and lived another five years.
How do we protect ourselves? How can caregivers protect and advocate for seniors?
This can be a controversial and personal question. Many people say that you should not lie. My husband was one of those people who believed it was wrong to lie to anyone, even my mom with dementia.
After my sister died my mother, with severe short-term memory loss (dementia), inquired about her daughter Shannon. My honest husband told her that she had died. Her reaction would be like any mother learning this terrible news. A week later, my mom asked my husband about my sister, Shannon, again. Before I could respond, I had to witness my mother’s intense pain of learning that her daughter died for the second time.
Every time she asked the question about my sister and got the answer that she died, it was like the first time that she ever heard about it. She couldn’t grasp her daughter’s death in her long-term memory. What a blessing? Right? Wrong!! It is so hard to lose a sister and not share that loss with your own mom. She just was not mentally capable.
It was time to train my husband how to handle the sister question, so he could be prepared. Next time my mom asked where Shannon was today, he would say that we had not seen her in some time, but we think she is doing great (in heaven of course). My mom was satisfied with that and let it go.
What about a spouse passing? This one is tough if the senior husband and wife lived together or regularly visited his or her spouse with dementia. The loving spouse may be in the dementia person’s long-term memory.
This happened to my mother-in-law, Amy. She would ask about her husband every time we visited her. She would inquiry, “Where’s Bill?” or “Did Bill come with you?” He had not died, but was hospitalized after a heart attack. It was so hard on her that her husband of 65 years was suddenly gone.
These senior spouses (my in-laws) never lived together again. Within a few months my father-in-law was put on hospice. Amy lived in a licensed assisted living community. Sadly they were two hours apart. She always asked about him.
It was heart breaking to witness their last visit as husband and wife. They just held hands and looked at each other. A month later my father-in-law had passed away.
I taught the family not to share his death. Amy could not handle it. It would have been too confusing for her because of her dementia. At the time the psychotropic medication combined with the dementia allowed very little clarity in her brain.
What are your thoughts on this conversation? Would you tell a dementia person over and over that someone died? Would you tell them once?
Diane Masson has worked in senior housing for 18 years and is the regional marketing director for two debt-free Continuing Care Retirement Communities in Southern CA (Freedom Village in Lake Forest and The Village in Hemet). Her first book “Senior Housing Marketing – How to Increase Your Occupancy and Stay Full,” is being utilized by senior housing professionals across the country. Her new book is an all-encompassing answer guide for seniors called, “Your Senior Housing Options,” designed to help seniors navigate choices quickly. Learn more tips at: Tips2Seniors.com
Can you ever trust a retirement or assisted living community to take care of your mom better than yourself or a family member? Long distance relationships are never easy. Add dementia and hearing loss to the story and long distance communication with a senior parent is impossible.
The only way you really know if your mom or dad is okay is to have eyes on them for yourself. My husband just went 1000 miles by plane, two hours by car and a 20-minute ferry ride to visit his mom, Amy. One year ago, she was hospitalized after her husband had a heart attack. After the trauma of her husband (who was her caregiver for five years) being hospitalized, she eloped and the police had to bring her home. Amy is now in her third licensed assisted living community.
How do you evaluate the care of your senior parent? What should you be looking for or asking about on a one-day long-distant visit?
First, how does mom look? Is her hair washed? Are her clothes clean? Do the other residents look well cared for? The answer to all of these for my mother-in-law was good and yes!
Can she feed herself and how much can she consume? Always stay for at least one meal. My mother-in-law ate three plates of food over four hours by herself and asked for dessert. A year ago, she never wanted to eat, so this was a huge improvement.
Does she know your name? Can she hear? How does she communicate with the caregivers? My mother-in-law introduced my husband (her son) by his full name to a caregiver and said, “This is my number one son.” It was difficult for my husband to communicate with his mom in the dining room, it had too many distractions and was too loud. One-on-one, she could communicate and hear better. Plus, the caregivers actually bent down to talk to her – very nice!
What is mobility like? Is it better or worse? Invite them for a walk to determine the current status quo. The memory care layout can be shaped like a square inside. So they can walk all the way around the square without going outside. Amy and my husband walked it 25 times. She always used her walker and this was a huge improvement.
Observe the activities or it’s even better to become engaged with your dementia parent. Unfortunately not one activity happened at the memory care community on Saturday. One activity was scheduled and it never took place.
Watch the caregivers’ treatment and management of the other residents. This better be good or you need to move your parent ASAP. Amy’s caregivers were super. They treated all the residents well and managed an entire room full of dementia residents simultaneously.
Here was the report card for Amy and the memory care community.
Cleanliness of all residents: B+
Taste of food: B+
Communication with mom: C (The severity of her hearing loss is dictating this score.)
Caregivers interacting with residents: B+
Activities offered: D+ (They did offer to paint her nails or it would have been an F.)
Building layout and community spaces: A
Some of you may want a care conference to meet the key staff like the administrator and the nurse. You can learn exactly what types of care they are providing and details about medication management. We had one of those a few weeks ago, so my husband wanted to spend all his limited time with his mom.
You have to see mom or dad for yourself. Please have one local relative with eyes on your senior.We are so lucky that my sister-in-law does a super job with this. Her regular visits have improved Amy’s mind, attitude and appetite.
Good luck with your long distant visit and hopefully these tips will help you.
If you have a long distant parent, please share your experience in the comment section.
Here’s a quick summary of “Your Senior Housing Options,” including the costs and consequences from tips2seniors.com. It walks you through a dementia scenario including all the choices for a vulnerable senior. This video can empower an independent senior to plan ahead or help an adult child put their parent in a quality senior community.
Do you know a senior(s) who has mild to moderate Alzheimer’s? This article will share what a clinical trial is testing and how far along in the Alzheimer’s disease a senior can be to remain eligible to participate. There are about 60 study sites located around metropolitan areas in the United States.
Nourish Ad clinical research study is testing an investigational treatment for Alzheimer’s disease and memory loss. “Investigational” means that this treatment is currently being tested and isn’t approved or available for use by the public. The investigational drug is called AC-1204. It is a double-blind study to improve thinking processes for people with Alzheimer’s disease. If a senior volunteers for this study, they either get the drug AC-1204 or not. Learn more about the company, the drug and eligibility for the trial HERE.
My mother-in-law, Amy, has Alzheimer’s and I hope we can figure out this disease in her lifetime.
I am not a doctor, but my simplified version of this trial is as follows: Seniors’ brains work on glucose. Seniors with Alzheimer’s brains do not process glucose normally. This trial will give a senior with Alzheimer’s a daily drink that provides an alternative energy source for the brain to improve memory.
A total of 480 seniors can qualify for this 6-month study. Senior participants must be 66 to 90 years old with mild to moderate Alzheimer’s or memory loss. The senior must have a permanent caregiver or family member participate in the study as well.
The study is designed to look at the safety and effectiveness of AC-1204. If a senior completes the first part of the study, he or she will have the option to continue AC-1204 for 6 more months at no additional cost.
There may be risks for participating in any clinical trial. Consider the risks and benefits before involving your loved one. Clinical studies are required by the FDA (Food and Drug Administration) prior to the release of a drug to the general public. Not all investigational drugs are approved by the FDA.
For managers/administrators of assisted living and memory care communities: If your community resides by one of the metropolitan study sites, a local doctor who is overseeing the research study could put on a presentation for your staff/caregivers or possible participants. Call Laura for more information at: 303.999.3742.
How do you keep your mom or dad safe in a memory care community or assisted living? A retired cop moved into my mother-in-law’s memory care community and has been demonstrating sexual and violent aggression against her, other residents, and staff. This is what my family is facing now. Read about the incidents in, “Violence in Memory Care,” HERE.
This is a list of whom we have emphatically voiced our concerns:
The State of Washington (surveyors of licensed assisted living)
Adult Protective Services
Our family requested a care conference to discuss the safety of my mother-in-law, Amy. Two ombudsmen, the administrator, three adult children and myself attended it. It was the worst care conference that I have ever experienced in my 17 years working as a professional in senior living. On a personal level, I have attended numerous care conferences for nine years as an advocate for my own mother who had dementia. There is always a conclusion at the end of the care conference that provides some sense of hope for improving care or concerns.
Why was this care conference so bad?
The administrator would only talk about Amy. She refused to discuss Amy’s safety in regards to the aggressive cop, because of HIPPA. She refused to share any measures or policies that the staff was following for Amy’s safety. Are you kidding me? I specifically asked, “What are you doing to protect her?” She said that she could not answer that question and kept talking in circles.
The ombudsmen were no help either. They said they could only discuss Amy because we gave them permission to do so. They could not discuss any other residents or the aggressive retired cop because they had not been given permission to do so. Nobody would address the elephant in the room, which was an aggressive retired cop with dementia preying on vulnerable residents.
What about Amy’s safety? What about the other residents’ safety?
The state did a surprise visit to the memory care community last week and said there are no new violations. This community is in a rural part of Washington State. There is not another community in the local area.
Any advice from senior living professionals? What else can we do?
Tip: For adult children looking for memory care or assisted living. Interview the administrator, before you move your parent into the community. Find out how long they have worked there. We did this and the answer was two years. Life was good for Amy until this experienced administrator moved on.