On Christmas (2010) my step-father was hospitalized. He was so weak that he was unable to walk and over couple of months had lost a tremendous amount of weight. Late last spring he had experienced a physical/mental health crisis that may have been triggered by a change in medication after decades of stability. Over the summer my brother and I successfully put together a care system using the excellent resources of the local VA system. For many reasons, many of them not rational, he refused to use these resources.
In California (for good reason) a senior citizen has to be extremely impaired for there to be a mandate to take over making their medical decisions. Regretfully, my step-father's decision- making process was severely impaired and his medical choices resulted in his near death and apparently the loss of all quality of life. It is unlikely that he will ever return home until the day comes when hospice can assist. He currently has a conservator for medical decisions due to mental health impairment. Dementia is one aspect of his diagnosis.
When my brother called and told me I needed to come, I was not prepared emotionally but I was, I thought, skilled regarding how to access resources and put together systems of care. I am a social worker, this is what I do but with children and families. What I found was a nightmare of fragmented services, overworked professionals, and an almost complete lack of coherency in the medical systems serving seniors in the urban area where my step-dad lives. At the end of our journty, the Adult Protect Services supervising social worker (APS was not involved due because when I made the report my step-dad was already in the hosiptal) told us we did one of the best jobs she has ever seen negotiating our way through the jumble of services. This saddened and troubled me. It was exhausting and overwhelming for us, what is it like for others?
I thought I was ready when it came to info and skills. I wasn't even in the ball park. The most helpful professional we met in the hospital was an ex-Navy chaplain who became a hospital chaplain upon leaving the military. He took time to sit with us and hear the whole story, to meet my step-dad, to see the person that still existed among the delusions. He made a few suggestions that were helpful and helped us to work successfully toward a transfer to a geriatric-psychiatric unit in another hospital specializing in geriatric care.
Near the end of life, when lightning strikes, it can be catastrophic and confusing and require choices and knowledge that few of us have even considered let alone prepared for. The one thing we can be pretty certain of is that most of us will be required to be involved in making medical, financial, and legal decisions for elder parents.
My brother had thought he was well- prepared with a durable power-of-attorney for medical related needs and a springing power-of-attorney for financial needs. Not so. No one at the necessary banks knew what to do. Do not count on there being knowledgeable and compassionate professionals present to assist you on this journey. While they may exist, you will have to have the skills to find them.
Hindsight is 100%, I know. I wish I had collected important phone numbers, researched terms like SNFF, and bookmarked websites. If you have senior parents who are enjoying wonderful health, now is the time to do it. If you have moved out of middle age and have started the next part of the trail, consider putting together for your children one of the most important "care packages" you will ever give them.
Here are a list of resources that I found helpful and now have in my senior crisis "emergency kit":
- Your local Area Agency on Aging (a national program structured with local resource and referral services available by county) http://www.n4a.org/about-n4a/
- Visiting Angels is a Home Health Care Agency that has some good information available. Here is an article on Senior Preparedness for Emergencies. It lists the basic info that is critical to have access to when disaster strikes.
- Know what a hospital medical social worker does (Click HERE) and be prepared to insist on talking with one soon after your loved senior enters a hospital. While they put together discharge plans, they can also arrange for and facilitate a patient care conference which will give you slightly more information than hurried 1 - 5 minute pressured contacts with medical professions in the hospital.
- If you are dissatisfied with any aspect of care or treatment of your loved one or family members while in the hospital, ask to meet with the Charge Nurse of the ward. I found this professional to be respectful and compassionate.
- Know where your loved senior's family doctor has Hospital Privileges. Go to those hospitals. Otherwise your family member is very likely to NOT have a medical professional who knows their history and is invested in them personally.
- Know what medical insurance/medicare coverage your family member has. Understand what it covers. Click HERE.
- Learn the confusing alphabet soup of home health care vs. nursing facilities vs SNFF and learn about which local facilities are hell holes and which ones provide quality care. I wish I had found this excellent resource link before our family crisis. Click Here. You will be able to research detailed information including the specifics of successful or failed govt. evaluations.
- Know how to choose a skilled nursing facility (and what it is). This excellent medicare brochure has really useful information. Click Here.
- If your loved one qualifies for services through the Veterans Administration, know what they are and how to successfully access this system. The VA medical social workers were the most helpful people we found.
- If you live far from your loved one, consider hiring a geriatric care manager. Visit the National Geriatric Care Manager Website by clicking HERE. Usually a licensed clinical social worker in a very specialized practice, a care manager is not covered by medicare or insurance yet we found the service to be indespensable. We have no local family members available for the many case conferences where we wanted someone to represent our family goals and ensure that my step-dad's best interest was the primary consideration for all decisions.
- AARP - I completely forgot about this useful resource. Probably because I am in total denial that I have personally been AARP eligible for many years. For a link to the AARP health resources page CLICK HERE.
- Discuss with your bank representative exactly what protocol to follow to activate a "springing" power-of-attorney. Get this in writing with the name of someone in authority to back it up should you need to deal with a bank branch in another location.
If you find yourself on this particular difficult trail, my prayers for the kindest possible journey will be with you.