What kind of professional is best able to manage and advise the total scope of someone's Alzheimer's care?

3 answers | Last updated: Sep 25, 2016
Sistercris asked...

What kind of professional is best able to manage/advise the total scope of someone's Alzheimer's care? My father is at home after multiple sedative overdose at a nursing home (and three weeks in the hospital to recover). We have two paid staff caring for him most of the time except for afternoons when there is one. He lives with my mother who is 80 and very dependent on outside advice for all decisions regarding my father's care. His doctor is an internist who is also my mother's doctor, and I believe there is a conflict of interest. He is more concerned about my mother's health due to her stress, though she is not doing any direct care of my father anymore and is now able to sleep at night. She is not happy having people in the home but my sisters and I begged her not to let my dad die in the nursing home, and she has gone along with that. Most of the time my father is kept in bed. Before the nursing home episode he was ambulatory, could go to the bathroom by himself and eat normally. He could go out and get the mail and check to see whether the cars were in the garage, etc. Because of the drugs in the nursing home (Haldol, Ambien, Atavan and Benadryl), he almost died - kidney failure and lungs were filling with fluid. The drugs paralyzed him so he could not eat. After three weeks of recovery in the hospital he was walking with help and could eat ice cream, but they sent him home with a tube in his belly anyway. Medicare paid for some physical and speech therapy but they only paid for three hours of therapy, six half hours each and his case was supposedly closed (I cannot get the agency to return calls). He has regressed from where he was in the hospital. The staff leaves him in bed a lot, even when awake. I would like some answers but the care agencies seem most concerned with liability so when he sneezes they say go to the emergency room. Help!!! I am thinking about getting a geriatric doctor for him. My mom is OK with this. But it seems to me a doctor will just examine him and point us to more of this "care" that is more concerned with filling out the proper forms for Medicare and limiting their liability. Social workers seem to be experts at how to obtain benefits (and where to find a nursing home), but most of these Medicare "benefits" that my dad received appear to have been a waste of time and taxpayer money.


Expert Answers

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

I'm appalled at your father's treatment, but sadly, I'm not surprised. You're correct that your father needs to be seen by a gerontologist, an MD with a geriatric specialty, or a geriatric psychiatrist. Also, contact a social worker to help you through all the mazes.

I would expect the new doctor to make substantial changes in your father's care. As long as he's able to swallow, he should not be on a his feeding tube.

Talk to the new doctor about a comprehensive plan, including physical and occupational therapy. Ask the doctor to write a detailed directive to the agency. (You can write it and have it ready for the doctor to approve and sign.) If the agency staff won't comply, it's time to switch agencies. If you need to, file a complaint with your state's licensing agency.

For his mental and physical wellbeing, your father should be up and walking and encouraged to participate in daily life as much as possible, including his old pleasures of getting the mail and checking on the cars or something equivalent. Direct his caregivers to keep him up during the day, except for a one-hour nap in the afternoon. Ask the physical and occupational therapists to give the staff a care-plan to help him rebuild his muscle mass. (A few days in bed will quickly cause atrophy in our muscles.)

I'm sorry that you've had such negative experiences with the "system." Unfortunately you've discovered the hard way that families need to be proactive when helping a parent with dementia. I hope that you're acting proxy for the healthcare of both your parents. As healthcare proxy you have the right to specify if and when your father's to be taken to the emergency room.* The truth is that ER visits can be so traumatic that a person can suffer an immediate and sharp decline in their dementia. If the healthcare agency is not willing to follow the directives, dismiss them and hire another company.

We all need to be well-informed and proactive when caring for our aged parents. When you meet with your "team" (caregiver, geriatrician, social worker, PT and OT) put together a comprehensive care plan and stay involved as much as possible.

Your father is the consumer. Don't let the system bully him and you! Your dad deserves to live the best of days, eating ice-cream or whatever makes him happy. Good luck.

*A personal note: I had a directive for my dad when he lived in a care facility. It said in no uncertain terms: DO NOT SEND DAD TO THE EMERGENCY ROOM EXCEPT FOR A BROKEN BONE OR UNCONTROLLABLE BLEEDING. He lived to 96 1/2, happily dancing and singing until the last day.


Community Answers

Sistercris answered...

Thanks! I live 3000 miles away so I am really hoping to find a local social worker who can act as my agent. Thankfully everyone involved in dad's life cares about him. It's just that when his legs are tired, the staff wants to wheel him around. I can understand that, but that's why I want some more coordination. My mom is of sound mind but has had a lot of health concerns recently and reacts to the situation with stress. But she is the one who got him veteran's benefits and has accepted the in-home care situation that I'm paying for. My sister lives nearby but she is a full-time nurse who is raising three kids as a single mom. She has been a great advocate and is the one who more than anyone saved his life in the nursing home, but she is very busy. We have about five caregivers full and part time who just love dad. But they don't always get along and this drives my mother nuts. We have an appointment with a gerontologist (the one who took him off of the drugs when he was in the nursing home) - he will take dad as a patient and his office manager claims that they oversee all his care - that the people who provide nursing, etc. report to them weekly. But I want someone to report to me, and they seemed confused when I told them that. Also it seems unlikely that they will supervise the agency caregivers. But we shall see. I will be back first week in October and will try to set up a meeting at that time.

Anyway I have been here almost a month and will be leaving for home this week so I am going to keep trying to see what I can do.


Jytte lokvig answered...

Good so far. A gerontologist may just be the right agent for you. Please let us know how you do.