Planning Service Providers...What's a Wife To Do?

Ok, my last post left even me frustrated with its lack of specificity and helpful tips about planning services and supports at home. Today I reflect back on a visit I made with other state bureaucrats to some folks who were receiving services at home chosing independent living over living in a care facility. The folks we spoke to had spinal injuries, gun shot wounds, or other conditions which resulted in limited or no uses of arms and/or legs. I remember talking with a married couple who were obviously in love and happy in their life together. The husband was an engaging person who was very tolerant of our questions and eager to enlighten policy makers. I'm not sure who in our group asked the question, but I remember his answer to the question about how his wife helped in scheduling, training and managing service providers. His injury was a result of a ski accident as I remember; or maybe it was an auto accident. Anyhow, his injury was high level spinal trauma; he had no use of arms or legs. Many of us assumed 24/7 revolving door of service providers. Those of us with limited first hand knowledge assumed his wife handled many details of arranging care. WRONG! He was very gracious and patient as he explained that his relationship with his wife was no different than in other marriages--family stuff, money stuff, shopping, school/work, etc....I don't remember all the details. I do remember his firmness in describing his commitment to his marriage (which are tough waters to navigate anyway) and his love of his wife. His saw his relationship with his service staff as his responsibility and they had made an agreement that he would handle all the details; hiring, firing, training, scheduling, etc. He didn't want day-to-day discussion with his wife to be focused on his need for assistance. As much as possible, this couple chose to work at not allowing the disability and his care needs to come between them, preventing a richer and healthier relationship. They didn't want their marriage to be disabled. I will never forget that couple!

Consumer Information About Long-Term Care

In 1986 I made a career change (life happens!) from education to community organization and specifically, senior services. I wandered unaware into the world of long-term care facilities and supportive community services for seniors; meal programs, senior companions, etc. It wasn't long until I began asking all the questions that families ask when they are thrust into the long-term care services; how can I (or my loved one) stay at home and get services? what happened that send a person to a nursing facility? Because I was trained as a teacher, I have spent over 20 years trying to figure out what information would best prepare consumers. Have I discovered the magic curriculla that can help consumers? Not hardly. I've spent the 20+ years learning the shape-shifting complexity of declining function, dementia, need for services, high costs, government bureaucracy, health care paperwork and family dynamics all come together to create the perfect family storm. One thing stands out among my thoughts that can best prepare for that storm. And that is Don't Go It Alone and Ask Questions. Disappointing as that may be, it's the best I can do. Consumers and families and as I near 65, I understand that people don't like to admit they need help, let alone talk about Frank's "autumn of my life." I continue to come back to concepts of community and family, understanding that some unfortunately, have neither and have never had either. Long-term care, however, is the great equalizer. Chronic care and disability happens. It's a journey and the best information a consumer could be given is that others have been down that path and the community is out there to help. Reach out!

When Leaving the Hospital---Don't Forget the Doctor's Order for Home Health!!

If there's one bit of information I'd pass along to seniors and people living with disabilities is ALWAYS ALWAYS ask for a doctor's order for home health services!!! when leaving the hospital. That at least opens the discussion. If you haven't seen the doctor, have the nurse put a note in your chart (or your loved one's chart) DO NOT DISCHARGE WITHOUT MD ORDER FOR HOME HEALTH AGENCY SERVICES. Whether you need services at home for a short time or for the long-term, home health agencies can help you and educate you on how to set up services that help with activities of daily living--showering, eating, toileting, etc. or nursing services or nutrition education or social work. Even if it's only for a short time and even if you have to pay, it's worth it! You can then figure out what you are dealing with, what insurance will cover and how long you'll need help. Too many discharges from hospitals happen at 4:00 on Friday afternoon in a rush without time to absorb information about your conditions are all about, how long they are likely tol last, and what assistance might help and what to do in an emergency. Ask for the information you need!! Don't go home without a doctor's written order for home health! Or at least consider home health alternative or assisted living alternative to a nursing facility. You have a right to make an informed decision.

Compassionate & Neutral Info About Long-Term Care Scarce

Much of what you can find on the internet is info about long-term care from attorneys and insurance agents. However hepful that is when you want to buy LTC insurance and/or set up a trust, it loads the discussion with a pressure not always helpful in a situation when you are trying to figure out how to keep yourself or someone you love comfortable and safe at home for as long as possible. LTC services for any one person are unique, requiring careful and neutral discussions about quality of life, daily activities and how you feel about receiving help from others. Too much help at home is overbearing and expensive and caregivers take over the home that is uniquely and peacefully yours. Too little can leave you unsafe; yet you may desire to accept risk. These are delicate and very private discussions; not to be driven solely financial interests. Finances are a large factor in the discussion. But all the more reason to find a neutral party to help sort it all out. Social workers are excellent sources for this sorting out and if you find a geriatrician or gerontologist, you hit the pay dirt of the long-term care process. ASK EVERY QUESTION YOU CAN THINK OF so that the days receiving help from others will be as rich as the life you've had up until now.

Should You Give Up Your Life to Care for An Elderly Parent or Relative?

Not an easy question and no easy answers. Lots of people struggle with this every day. Some find they can arrange for services and supports and still carry on with their own daily life without much disruptions. On the other hand, many take leave from a career or family to provide care at home instead of admit an elderly relative or spouse to a nursing facility. What are the sacrifices and what are the rewards? When do you draw the line and step back into your life? What are the considerations that helped you decide on a good plan.....Or what were the events that made it clear the price was too high?

If Not Nursing Home, What Should Long-Term Care Look Like??

States, consumers, families and advocates alike say they would avoid going to a nursing home. But if you or your loved one needs help with chronic conditions and daily activities, what does that care look like and who should pay for it? How many hours? Who should help? How much should it cost?

Challenges to Home-Based LTC

A number of state and federal initiatives are in progress expanding opportunities to build home and community alternatives to costly nursing facility stays. I invite providers, consumers, family caregivers, personal care givers and anyone else to write about the challenges -- success too, in getting services at home and in the workplace. Focus of this blog is California.