My mother is now so frail we cannot care for her safely at home. A male aide can lift her. But even with two women (one aide plus me), it’s dangerous to maneuver her because she can’t stand at all. Dementia and big transitions seem to go hand in hand.
The choice to move her has been very difficult. I had a vision of the future and how our family would respond to it. I always hoped that my mother would stay home with us until her final exhale. But #dementia is full of surprises. As the disease evolves, each new phase forces you to make hard decisions.
Over the past three years, we adapted this house to accommodate Mom’s medical equipment and special needs. It began with a ramp and ended with two wheelchairs, a shower bench, and an electric bed. We have all manner of sweaters, gloves and blankets to help keep her warm — a big challenge in winter! At this point, there’s almost no room to walk around. I can’t imagine dragging a Hoyer lift through the house to transfer her. The relevant doorways are too narrow to move a lift in and out. Mom only weighs about 90 pounds, but lifting her is like moving a drenched carpet full of wet sand.
Home Care, Home Hospice, What Next?
It’s very hard to find a placement you trust when someone is as fragile as my mom. She’s been on home hospice for several months, so we turned to the hospice social worker for suggestions. My sister and I visited several places and looked at a dozen others online. We finally selected a facility that has a great reputation, both locally and nationally. It was heartbreaking to see her confusion during the first days. People with dementia become disoriented quickly if you change their surroundings. I know my mother was wondering why her loyal aides were not around. She couldn’t speak but I know my absence worried her, too.
I have been visiting her often to make sure that the staff knows we’re watching everything they do. My current mission is to make sure that anyone who has contact with her understands Mom’s needs. I don’t mean the obvious ones or the items in the care plan. They have to grasp her subtle needs, too. Dementia and big transitions conspire to make holidays a lot less cheerful. But we’ll all find our way through this challenge. We’ve learned to live with everything else and — like it or not — we’ll adapt once more.
Over the past few months, our home care situation has shifted. My mother is now very frail. Lifting her with two people is difficult. I could not have survived autumn without the help of our home #hospice aides from Compassionate Care. But what happens when families are supposed to receive hospice services that don’t materialize? When hospice hurts, we need to take action.
When Hospice Hurts
If you’ve reached the point where hospice services are appropriate for your loved one do some research on providers first. Look for evidence of client satisfaction before you sign anything. First, try a quick Internet search. Modern consumers rate everything from refrigerators to paint. You should be able to find provider rankings online. Ask potential providers if they employ many aides near your home who’ll be available to provide you with adequate support. Request references from families who’ve received their services. If they offer nothing, maybe they have nothing to offer.
A recent article by JoNel Aleccia and Melissa Bailey in the Huffington Post describes devastating situations when hospices hurt families. Patricia Martin, for example, lived in an Alaskan village and desperately needed help. She repeatedly called her hospice provider seeking drugs to ease her husband’s accelerating pain. Mat-Su Regional Home Health & Hospice had promised 24 hour crisis care. But the hospice doctor and nurse both failed to show up for six days, leaving Ms. Martin on her own. Her husband died shortly afterward.
What if Hospice Fails you?
Ms. Martin’s story is just one of many such tragedies occurring in the wake of tremendous growth in the hospice industry. The same #HuffPost article states that hospice is a “booming industry that served about 1.4 million Medicare patients in the U.S. in 2015.” That number includes a third of Americans who died that year. Hospice providers are both “licensed by state health agencies and subject to oversight by federal Medicare officials.” Any service regulated by these entities can also be reported for failure to respond or other forms of negligence. Step one is to call your state’s office for Adult Protective Services. You can also contact the State Medicaid Fraud Control unit and file a complaint.
Research suggests that there are many instances when families are deprived of required #hospice services. According to law, hospice providers must deliver routine care and respite care (to give family caregivers a break). In addition, they must provide two levels of crisis care for patients with acute suffering. Yet the HuffPost article states that according to the Centers For Medicaid and Medicare Services (CMS), “21 percent of hospices … failed to provide either form of crisis care in 2015.”
If you are considering the use of #hospice services, you can learn much more about the industry online. You will find studies and consumer facts on the website for Kaiser Health News. This news site is a publication of Kaiser Health Foundation, a non-profit organization focusing on national health issues. More information can help you make better choices about how to help your loved one and meet your own needs as a #caregiver.