BL Special Report

BL Special Report: The heartbreaking complexities of in-home caregiving

Caring for a parent with Alzheimer’s is an act of love and patience. One local woman shares her story.

“Last year, I could see things were going downhill for my mom,” Amalia Ellis said. “I was having a hard time getting through to her. It felt self-isolating. I didn’t understand what was wrong.”

A hospital stay at the beginning of the year made Ellis aware of problems with her mother’s health she had not known before. Busy running a graphics design business from her home in Hollister and with two teenage sons to raise, maintaining day-to-day contact with her mother had been difficult for a while now.

She found out that her mother Kerry, at 66 years of age, had moderate to severe dementia and was no longer able to live on her own without assistance. Her condition was complicated by diabetes, high blood pressure and high cholesterol. 

“A lot of things were going on at once,” she said. “I am sure it happened slowly over time, but I could not see her often and I was just not there to see it happening.”

The hospital recommended a long-term care facility.

“I was under a lot of pressure to get her placed,” she said. “But the places they want to put her in were either really far away from me or didn’t have very good ratings, which concerned me, of course. But it got to a point where they said ‘you have to get her placed or we are going to start charging you for every day that she is here.’”

Ellis looked at one facility, but said she discovered there had been a history of patient abuse. The management assured her that there had been staff turnover since those complaints, but the tour they offered of the facility just raised more doubts.

“It was really quick, like they were only going to show me the surface of things,” she said. 

Ellis decided to admit her mother there, but more red flags immediately went up.

“When they admitted her, nobody even looked up at her or even said ‘hi.’ When we got to her room, the sheets were dirty, the dresser was rotting and falling apart. I was explaining medications she needed but they were not even taking notes.”

They did not stay.

“Based on the research I did, I found there is a lot of discrimination that goes on if you have serious health issues or mental health issues,” Ellis said. “Those factors come into play as to whether a person will be admitted into a nursing facility. Another issue is Medi-Cal: they don’t really want to deal with that either.”

Amalia Ellis and her mother Kerry. Photo courtesy of Amalia Ellis.
Amalia Ellis and her mother Kerry. Photo courtesy of Amalia Ellis.

Medi-Cal limits payments and types of care that can be offered to a patient, making certain kinds of patients not cost-efficient enough to admit. Patients who have special needs or conditions which make care more challenging may be relegated to lower-quality facilities. 

“A lot of places don’t want to deal with any kind of mental issue,” Ellis said. “I have called around 40 or 50 of these facilities. When they find out how young she is and that she is mobile with dementia, that sets off a red flag with them.”

According to the Alzheimer’s Association, six out of 10 patients will wander, forget where they are and even their own names, and become disoriented in surroundings that are familiar to them. This requires more care in monitoring their movements and actions.

For care facilities, it is a cut-and-dried decision. For those seeking help, it is a door being closed.

Britt Bassoni, Seniors Council Special Projects Director, said that patients with dementia are the most difficult to place in a facility, even in the best of times.

The best option, according to Bassoni, is to place the patient in a memory care facility, which offers more intensive care for seniors with dementia. These facilities are better trained, better staffed, and better equipped to deal with the issues of dementia—but at a higher cost.

“They can be a lot more expensive and they might be a long distance away from here,” Bassoni said. “You might be in San Benito County but the closest memory care facility that has a room might be in Fremont. That is not a viable solution because family connection and familiarity are very important for cognition issues.”

Nursing homes already house a substantial number of seniors with dementia at any given time, Bassoni said.

“Around 13% of seniors who have some form of dementia reside in a nursing home and 60% of nursing home patients have some form of dementia,” she said. “It’s everywhere.”

However, care facilities are wary of taking on additional difficult patients.

“Individuals with dementia provide a lot more care challenges,” said Bassoni. “Just because you have dementia doesn’t mean you can’t get into a nursing home. But they can add another factor that would keep you out and I think it is a factor that has been played around with a lot.”

Once a prospective patient is identified as having dementia, the facility can look for other reasons to deny the patient.

“If you tell them your parent has a problem like wandering in the afternoon or is difficult to pacify or manage, right there, if I am an admissions counselor, it is a red flag,” said Bassoni. “They are thinking, even though it is not legal, ‘If I can find a reason to deny this person care, I am just making life easier for my staff and the facility.’”

Ellis certainly came to understand the obstacles. “It got to the point where, when I got off the phone, I would be in tears,” she said. “How can these people be like this? You would think they would have some understanding of what families are going through.”

There was no choice but to bring her mother home and learn how to provide for her there.

Ellis joined a growing group of over 65 million people—29% of adult Americans—who suddenly find themselves responsible for a chronically ill, disabled, or elderly family member. According to the Caregivers Action Network, family and friends are the only source of help for 78% of adults who need long-term in-home care.

“It’s not the ideal situation because I have two teenage sons and only a three-bedroom house,” Ellis said. “I had to have my younger son move in with the older one to make room for my mother. I work from my living room. It has been hard to get work done. I have had to stop taking on new clients.”

A typical day begins at 6:30 in the morning, when Ellis tries to have some time to get her day started with a cup of coffee. 

“I never know what will happen in the morning, how things will be when she wakes up,” Ellis said. “I make sure she is clean and dressed. I take her blood sugar, give her medications, and make her breakfast. Then I clean things up.”

After breakfast, Ellis has some time to take a shower, answer some emails, and get a little work done, but soon lunchtime arrives.

“She is very punctual about when she wants to be fed, so I don’t have my leeway with that,” Ellis said. “She might take a nap after that, but we also have a lot of doctor appointments to go to. I try not to schedule more than one a day because it is just too hard. Then there are trips to the pharmacy, shopping for dinner, getting her evening medications ready and blood sugar done. After dinner she is usually pretty tired and wants to go to bed. That is when I finally have time for myself. It is just a couple of hours and I am always exhausted.”

It has created a strain on the family as well.

“I know it is hard on my sons,” Ellis said. “They are frustrated with the situation and it is really hard for them to have a relationship with my mom because her dementia is so advanced. I think it also scares them that I am going to end up that way.”

Ellis has not looked into getting any outside support.

“It is just difficult for me because we are so on top of each other in the house and there is no dedicated space for someone else,” Ellis said. “I would have to show them my entire crazy routine and tell them, ‘If something happens, here’s what you have to do.’ I know hospice is an option but I don’t think it would be that helpful for me.”

Hospice care provides for patients diagnosed with terminal conditions and can provide on-call nurses and in-home services, along with support to home caregivers through volunteers and counseling services.

One of the other issues is just a reality of dementia: short-term memory loss creates disorientation and fear.

“When I leave the house for even just a few minutes, she starts pacing and asking my kids, ‘Where’s my daughter, what’s taking her so long?’” Ellis said. “She does not remember that I will be right back.”

While home caregiving can come with a great financial burden, the greatest pressure comes from emotional stress, with feelings of isolation, guilt, and resentment. This can create additional health hazards. A Stanford study suggests 40% of caregivers for patients with Alzheimer’s disease or dementia die before the person they are caring for at home.

“I do have the feeling of needing to take care of her,’” Ellis said, “but if I am being honest, there are some days I feel resentful. There are so many emotions and so many feelings, it is so hard to deal with.”

With few options open, Ellis decided to not continue the search for a care facility. Instead, she will be moving to a larger home that will better accommodate her mother and her family. The home includes an alarm system and video cameras so the family can monitor things “to protect her down the line if things get worse.

“There have been signals from the universe that I did the right thing. I just read that one of the group homes that I was trying to get her into [in Watsonville], that was actually one of her two choices, just had a huge outbreak of COVID.”

The search for decent end-of-life care has created an awareness in Ellis of how “difficult” patients are viewed.

“Above all, this experience has opened my eyes to the way people treat seniors,” Ellis said. “It has really been driven home to me when we would go to the nursing homes. It was like she was just nothing to them. But this is my mom. I would not be who I am without her and I want what’s best for her.”

 

 

BenitoLink thanks our underwriters,  Health Projects Center and Del Mar Caregivers  for helping expand our senior health coverage. Health Projects Center supports more reporting on senior health issues and solutions in San Benito County. All editorial decisions are made by BenitoLink.

Since 1988, Del Mar Caregiver Resource Center (CRC) has served families of persons living with neurological conditions such as Alzheimer’s Disease, Parkinson’s disease, Multiple Sclerosis, Stroke, Traumatic Brain Injury and other conditions that cause memory loss and confusion.

BenitoLink appreciates the Health Projects Center and Del Mar Caregiver for their interest and support for this important work.

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Robert Eliason

I’ve been a freelance photographer since my dad stuck a camera in my hand on the evening of my First Grade Open House. My dad taught me to observe, empathize, then finally compose the shot.   I have had gallery showings and done commercial work but photojournalism is a wonderful challenge in storytelling.   The editors at BenitoLink have encouraged me to write stories about things that interest me, turning me into a reporter as well.  It is a great creative family that cares deeply about the San Benito community.