The financial costs of caregiving.

Were you or your loved one prepared for the costs of providing short or long term care?  What have been some of the unexpected costs you have incurred as a caregiver?  

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I was so surprised by the cost of everything when I started caring for my mom. So much for thinking Medicare covers everything. I wish my mom had saved more money for herself but now we are in a situation where she has Medicare but also receives
Medicaid to help cover additional costs. I’ve had to pay for a few things here and there but that’s hard for me too.

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There is a growing gap in end-of-life custodial care for many seniors who have extremely limited financial resources and who do not have adequate family support at end-of life. While Medicare pays for medical Hospice in CA, and there may be a few Medi-CAL beds available in local skilled nursing facilities, more and more people are facing the trauma of dying alone under stressful and often painful circumstances.

A small group of people in Ventura County decided to do something to help, and in March of 2012, "Our Community House of Hope" (ourhouseofhope.org) began providing compassionate and loving end-of-life care at no charge to terminally ill people so they could live out their last days in peace, without fear and loneliness. The organization currently operates a 4-bed, residential care home in Thousand Oaks, CA, and will eventually be capable of serving an estimated 75 end-of-life residents annually. OCHH is funded 100% by community donations. Residents and their families do not pay for any services.

OCHH also offers ongoing educational programs on end-of-life care issues to the community, local university students and to health care professionals, in addition to building public awareness about end-of-life care alternatives that local communities can offer with compassion to those in genuine need.

Our Community House of Hope is a social-model that can be replicated in other California communities as well as across the nation in response to the end-of-life care-giving crisis. The near future goal of OCHH is to build a local free-standing, ten-bed end-of-life residential care home that will serve an estimated 180-200 terminally ill residents annually, with an education center that offers ongoing educational programs on end-of-life care issues.

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Barbara, thank you for addressing one of the major issues facing so many seniors and their caregivers. More certainly needs to be done to fill this gap and make quality end of life care more available to those in need. Thanks also for providing information about "Our Community House of Hope." It sounds like there is a dedicated group in Ventura County working to make a real difference.

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I'm in Maryland having problems with the nursing home here because medicare does not pay for LTC, so I applied for medicaid for my mother it takes so long. I cannot pay the $5000 fee that they want, the lady in the fiance office is rude, I'm on disability my self, what to do. is their a grant I can apply for to help with these fees?

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Hello FASHIONRB, I'm so sorry you're having such a difficult time securing and paying for long term care for you mom. It is terribly expensive. My first suggestion is to check the Maryland Department on Aging website, http://www.aging.maryland.gov/housing.html, to see what resources they offer. Currently they have information on the Senior Assisted Group Home Subsidy Program, http://www.aging.maryland.gov/housing.html#SeniorAssited. You can investigate to see if your mother is eligible for the subsidy. Next locate and contact your Area Agency on Aging, http://www.msa.md.gov/msa/mdmanual/10da/html/dalocal.html, for additional resources. I wish you all the best with your search and with the care of your mom.

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I live in Hesperia, Ca. and my husband has dementia-alzheimer and he used to be a wander and got lost several time. The last time he got lost end up in the hospital and from there went to a nursing home where the charges were $3000.00 monthly he has been there since August now I am paying $2500.00 which still too high for me I applied for Medical for him but it was turn down. Right now I don't know what is going to happen I exhausted everything that I had probably I am going to bring him back home now he is in a wheel chair and is unable to move. I am 75 years old and my husband is 79 yrs old if you have any suggestion I will appreciated.