Dementia took over Pauline Finster鈥檚 91-year-old mind long ago and she may die without having another real conversation with her daughter.
After Finster broke her hip in July 2015, Jackie Mantua noticed her mother鈥檚 speech ebbing until she only said 鈥渉i,鈥� or that she felt fine. Mantua last heard Finster speak six months ago.
Finster鈥檚 hip surgery led to a series of medical interventions that left her with poor circulation in her legs. Then gangrene set in. Mantua won鈥檛 look at the dead tissue on her mother鈥檚 right foot that is now creeping from the toes to heel.
She has instructed the staff at the AlfredHouse assisted living home in Rockville, Md., where her mother has been in hospice care since earlier this summer, to keep Finster on Tylenol to hold back the gangrene鈥檚 discomfort.
Is that enough? It鈥檚 really all she can do for her mother at this point, Mantua said.
Hospice鈥檚 purpose, at least one of them, is to ease a dying patient鈥檚 pain at the end of life and improve the quality of that life. But what鈥檚 to be done when a dementia patient in her waning days can鈥檛 communicate her pain or help identify the cause? Or resists taking medications?
All those concerns can be troubling for family caregivers for loved ones with dementia and in hospice care, according to in the American Journal of Alzheimer鈥檚 Disease & Other Dementias.
Families often describe a cancer patient鈥檚 last months as stressful but meaningful. That isn鈥檛 the case with dementia patients because the disease changes the patient鈥檚 personality and causes behavior issues, according to George Demiris, one of the study鈥檚 authors and a professor of biobehavioral nursing and health systems at the University of Washington鈥檚 School of Nursing.
Caregivers who took part in the study said they worried that their loved ones were in pain, but unable to properly express it 鈥斅燼nd that possibility disturbed them, according to interviews with families taking care of dementia patients in their last stage of life.
Multiple participants described feeling frustrated and defeated by patients鈥� cognitive difficulties and changing emotions, the study reported. Some described the patients as 鈥減risoners鈥� inside their bodies.
Helping a dementia patient in pain can be challenging for hospice care providers, too.
Previous research, cited in the recent study, found patients with dementia were prescribed lower doses of opioids than patients with cancer with similar pain scores.
Other research cited found that hospice nurses caring for such patients frequently asked relatives to interpret patients鈥� 鈥減ain signals鈥� to help them assess pain. For example, one caregiver knew her mother was in pain when she moved a certain way in her chair. Another recognized his wife was in pain when a home health care aide gave her a bath by observing how she squeezed the aide鈥檚 hand.
Sometimes, patients gasp for air or repeatedly touch the same part of their bodies.
Mantua said she watches her mother鈥檚 face and stays vigilant for winces or grimaces. Her face is still expressive, Mantua said. Still, there are no words, only moans to indicate something is wrong.
Recently, Mantua said her mother has been acting 鈥渟trange.鈥� Instead of her usual vacant but happy smile, Finster looked at her daughter with a 鈥渉orrified鈥� expression. Mantua told the hospice chaplain that it looked like her mother had seen the devil.
The cause?
鈥淵ou have no idea because she can鈥檛 say anything,鈥� Mantua said. 鈥淚 was saying 鈥榃hat鈥檚 wrong? What鈥檚 wrong?鈥� and she鈥檚 just looking at me like crazy.鈥�
Finster,聽91 years-old, is rarely awake for more than a few minutes at a time. (Francis Ying/KHN)
Finster has had dementia for 10 years. She has spent most of that time in facilities with increasing levels of care, moving from an independent living facility, to assisted living to memory care. Mantua has felt some of the frustration that caregivers of other patients with dementia have experienced. Three or four years ago, when Finster still聽 had a phone in her room, she sometimes called her son Les 鈥� Mantua鈥檚 older brother 鈥� 10 times to leave him the same message that people were coming into her room and stealing her food. She simply forgot that she had called before.
Finster鈥檚 years of cognitive decline have taken a toll on Mantua and her family.
鈥淵ou get to the point you want them to die because it鈥檚 hard,鈥� Mantua said. 鈥淚t鈥檚 hard to deal with. It鈥檚 a very helpless feeling.鈥�
Now 53, Mantua is a mother of three children between the ages of 27 and 31 and grandmother to twin five-year-old boys. She said she doesn鈥檛 have the patience or natural caretaking abilities to tend to her mother full time.
It comforts her to know that her mother is looked after by a trained staff 24 hours a day, but for families who find themselves as the primary caregivers for dying dementia patients, the job can lead to anxiety, depression and grief, according to the recent study.
鈥淐aregivers stated that patients were combative because they could not understand that interventions were meant to help them, or that they forgot about past pain and so rejected attempts at assessment and treatment,鈥� the study said.
For families, a loved one with dementia can become like a stranger who grows angrier and more aggressive than the person they remembered, said Demiris, which 鈥渃omplicates the caregiving experience.鈥�
Pauline Finster isn鈥檛 aggressive anymore. Mantua remembers when Finster鈥檚 dementia made her paranoid and angry. She was once so combative, the staff at her former assisted living facility wouldn鈥檛 try to feed her unless Mantua or her brother were present.
The decision to begin hospice care wasn鈥檛 easy for Mantua or her family.聽 She said it feels like her mother is already gone.
There isn鈥檛 much for Mantua to do when she visits her mother at AlfredHouse. She chatters as Finster dozes, cradling a baby doll that is always with her. Someone at the assisted living home regularly changes the doll鈥檚 clothes, which amuses Mantua.
For now, she keeps driving an hour once every other week from her home on Maryland鈥檚 Eastern Shore to Finster鈥檚 room in Rockville where they wait for the end together.
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