Worried about Mom’s care at the end

Question: Four years ago, when my Dad was dying, my Mom and I were able to keep him at home until the end. We couldn’t afford to hire caregivers, but had help from the hospice workers several hours a week. The last two months were especially tough. It was an exhausting time – but I’m really glad we were able to make it happen. Now my Mom is sick, and it doesn’t look like she has even a year left. Mom and I want her to live at home, but I doubt it will be possible toward the end. What options will we have here in the South Bay?

Answer: You’ve learned much, and are wise to be thinking ahead about your Mom’s end-of-life care. The desired situation for most people is to die at home, peacefully connected to and surrounded by loved ones. And Medicare-funded hospice services can visit the home to provide medical care, pain and symptom management, and spiritual support, counseling and education.

Unfortunately, the desired situation is not possible for everyone. Caregiving can be exhausting, and not everyone has enough family or friends to meet the challenge. The hard work can conflict with connecting peacefully with the dying person. And even those who can afford to hire caregivers are challenged by the need to supervise them.

In the South Bay about 30% of dying persons receive their end-of-life hospice care not in their homes, but in a nursing home, assisted living facility or hospital. However, for operational or financial reasons (or both), those settings are rarely ideal for a peaceful end of life.

  • Hospitals are focused on acute care, on fighting to keep people alive – not on a calm, peaceful ending. While Medicare will pay for hospital services to fight an illness, it’s not there to provide a place for the dying person where the fight no longer makes sense.
  • Nursing homes, with their focus on restoration and rehabilitation, are less than ideal places for end-of-life care. Residents and families, and even staff, are uncomfortable having a dying person in the room or down the hall. Medicare provides very limited financial help, while Medi-Cal does help those with very limited assets.
  • Assisted living facilities (including smaller board and care homes) are focused on long-term residents and rarely have the staffing needed to appropriately assist a dying resident. Government financial help there is minimal.

There is good news on the horizon, however, for the South Bay. A local group is working to create Caring House, a home that will admit residents who are on hospice. Planning for six attractive and comfortable private rooms for residents, with open common areas for visitors, Caring House will be located in the South Bay and be the first of its kind in Southern California.

“Death is but a moment. What will the time near the end of the person’s life be like – how will they live – until that moment?” asks Caring House volunteer Ed Long. Caring House volunteer Dana Hodgdon adds “at Caring House, we’ll help our residents have time for connecting or re-connecting with family and loved ones, for putting their affairs in order, for just being in the warmth and companionship of others. And no one at Caring House will die alone.”

Caring House will set a standard daily charge based on operating expenses, and revenues will come from resident fees and donations. Caring House is an IRC §501(c)(3) non-profit corporation, and will use donated funds to be able to admit and retain those who cannot afford to pay the full charge.

The work of an attentive and professional Caring House staff will be augmented by caring community volunteers and (for a resident on hospice) by the outside hospice team selected by the resident. This support for the resident frees loved ones from the constant demands of caregiving.

Today, Caring House is seeking a home. While patterned after successful end-of-life care homes in other parts of the U.S., Caring House faces a challenge that the others haven’t faced – the high cost of Southern California real estate. Not yet in the financial position to purchase, the group is searching for a suitable home to rent. The group will renovate the property to provide a safe, accessible place for residents and visitors. The project will by licensed by the California Department of Social Services, with the licensing process expected to take about six months after the property is found.

Summing up, volunteer Pat Long commented “compared to the dying person’s home, Caring House will be the next best place (or, in some cases, a better place).”