Blog Post by Mike Brunt
April 21, 2010 – NPR Talk of the Nation host, Neal Conan, moderates a conversation with family caregivers who talk about problems and solutions relating to helping aging parents who are beginning to fail.
Audio recording lasts about 30 minutes. This is great content if you have the time to listen.
Excerpts from “Elder Law, Guardianship, and Special Needs Planning”
by Geoff Bernhardt, an elder law attorney in Portland, Oregon.
His contact information can be found at www.elderlawpdx.com.
Full text of this article can be found online at http://www.elderlawpdx.com/elder-law-articles.html
…A power of attorney must be signed by a person who is legally competent.
This means the signer must have the ability to understand the nature and importance of the document. If someone already has Alzheimer’s Disease, or dementia, or has suffered a stroke, it may be too late to sign a power of attorney. Therefore, it is important to sign a power of attorney while a person has mental capacity to understand the document.
…The main advantage to a conservatorship is court oversight, and the surety bond.
If the ill person does not have a trusted person to manage finances using a power of attorney, the conservatorship may be preferable to a power of attorney.
…In Oregon, there are three documents commonly used to specify your wishes about health care decisions in the event you are not able to communicate those wishes:
a living will, a durable power of attorney for health care, and an advance directive for health care.
- Living Will.
Also called a Directive to Physicians, a living will is a document stating that you do not want life-sustaining treatment if two doctors certify that you are in a terminal condition, and that life-sustaining treatment will only postpone the moment of your death. This document was widely used in the late 1980’s and early 1990’s. The main problem with a living will was that it did not appoint someone to review medical records and communicate your wishes about end-of-life care to medical staff.
-Durable Power of Attorney for Health Care.
The Durable Power of Attorney for Health Care was designed to supplement the living will. This document allowed a person to appoint an agent to communicate with health care providers and make decisions about end-of-life care. The main problem with this document is that it expires seven years after it is signed. A secondary problem is that the form was ambiguous, requiring the person to write the word “yes” to indicate that he or she did not want life support or tube feeding.
- Advance Directive for Health Care.
The Advance Directive for Health Care was authorized by the Oregon legislature in 1993. This form combines the best features of the living will and the power of attorney for health care. It allows you to appoint a health care representative to make decisions about health care for you in the event you are unable to do so. It also lets you give instructions to your health care representative so he or she will have a clear understanding of your wishes. The form does not automatically expire after a certain period of time, and can be good for your entire life. It also allows you to make additional comments about end-of-life decisions. An advance directive for health care is the best way to ensure that your wishes about health care would be respected if you faced a life-threatening illness or injury.
…A POLST form and guardianship are ways in which others can make health care decisions for you.
- POLST
Physician’s Orders for Life-Sustaining Treatment. This is a document on bright pink paper that can be placed in a person’s medical chart. It sets forth physician’s orders concerning certain types of end-of-life care. It must be signed by the doctor. Some people obtain completed POLST forms and post them on the refrigerator so they can be seen by paramedics in the event of a medical emergency.
- Guardianship.
A guardianship is a court order allowing one person to make health care and placement decisions for an incapacitated person. If you have not appointed someone to make health care decisions for you (for example, by signing an advance directive for health care), it may be necessary to seek the appointment of a guardian. People who suffer from dementia, Alzheimer’s Disease, or other illnesses affecting the ability to make important decisions often need the assistance of a guardian to make placement decisions. A guardianship is expensive – it can cost several thousand dollars to secure the appointment of a guardian by the court. It is far better to rely upon the advance directive for health care to appoint someone to make health care decisions for an incapacitated person. Even if you sign an advance directive for health care, a guardianship will sometimes be necessary to make placement decisions.
Blog Post by Jean Blackburn
who recently completed her gerontology studies at Portland Community College
My Mother loved her flowers. She had about 8 pots of African violets that were doing extremely well, and she always took great care of them. The first thing I noticed was that the violets weren’t looking as good. Then I noticed that the medication in her pill container wasn’t always taken. It was very confusing to try to figure out what she had really been taking. I decided to stay all night with her for a few nights to see how things were going in her routines as I had a feeling she was trying to conceal what was going on. I didn’t say anything to her about checking up on her, but just that I thought it would be fun to have a slumber party now and then. After a few “slumber parties,” I had to admit that she was failing a lot.
Mother had been living 5 minutes from my home after moving from Corvallis to Portland to be with her kids. After selling her home, she had a beautiful, new apartment which she had wanted for a long time. She loved having her own place where she didn’t have all the responsibilities. She thrived there for a few years. Then complications started with hip and back problems which required many doctor visits and consultations before proceeding with hip replacement. There were many other health challenges which meant many interruptions from Mom’s worried neighbors. These events required immediate action from me. I was single and self-employed. My siblings both worked at full-time jobs they found hard to get away from. I was the one who usually handled such things in the family, so the expectation was that I would do so. That’s the way it had always been.
I had been very fortunate to have a wonderfully loving and attentive Mother, so I enjoyed getting to be there for her. However, I needed to make an income; and with self-employment, time and momentum are extremely important. The most challenging thing for me was seeing Mother realize that she was failing. She knew she was repeating a lot and that she didn’t have the same energy and “get-up-and-go.” She had some depression. She knew her older sister and Mother had Alzheimer’s in their 90’s and that she was almost 90. I knew I needed to be stable and consistent for her, but my emotions were not that. Most of the time I was able to act like all was well and do what I needed to do to insure her comfort and safety. But it was draining.
I remember one particular time where I really “lost it” with Mother. I know it’s not atypical, but it is still something I regret. My best outlet was exercise and my closest friends. My son was away at college and then married and living in another state. I was used to being the one “who could handle everything well.” I had no extra time to even think. I was mentally and physically exhausted.
One Friday, Mom called at the end of the day to ask me to take her to the emergency room as she had been choking all day and couldn’t swallow without something coming back up—even saliva. She was frightened. She had waited to try to get my brother to help her. She was always trying to “even out” the care she required so that it all didn’t fall on me and my sister. My brother wasn’t available. After finding out that she had a hiatal hernia that was causing the problem, they “stretched” her esophagus, and that worked for quite a while. I distinctly remember this day, because it was the start of a real decline in Mother’s health. Whereas I kept thinking things would get better, they mostly did not. It was the beginning of a 10-year decline until she passed 3 ½ years ago. I had already made a big investment in time with Mother’s care, and many more “opportunities” were yet to come.
Mother needed less responsibility, help with medications, someone around to make sure she had good meals, more socialization to help with the depression, and a safer place to live (no burners). Her dementia was getting worse. She helped to pick out the next place she would live which was an independent living facility 10 minutes from my home. That worked reasonably well. I had tried to get Mother to move in with me. I wanted to sell my home and move us both to a one level. I even took her with me to look at a few homes I thought might be suitable for us to live in together, but she would not hear of it. I even asked a counselor Mother had talked to about her depression to help me convince her that she should live with me; she told me Mother absolutely did not want that.
Mother wasn’t so good at being able to “receive.” She was a “giver.” Though she wasn’t living with me, I was still “on call” as Mother had several falls and one was quite severe; but no broken bones. Her dementia got worse. She wasn’t confident enough to engage new friends, and one lady at her meal table was very aggressive which bothered Mother. I tried to facilitate her developing friendships. More and more she preferred being alone. As her dementia continued to get worse, I was there a lot. It eventually got to the point where she needed more care, and we moved her to a bright and cheery assisted living facility. This time, it was in a location in a geographical area that was about the same distance from each of the homes of me and my siblings, so that it wouldn’t be so handy for me to be “the one.”
Mother liked the new place, although she had some “hallucinations” that were sad. Since it had been difficult to get my siblings involved in all that was required for Mother’s care, I requested they meet with me and a counselor I had been talking with to discuss it. My sister and brother-in-law were there, as well as my brother, and my closest spiritual girlfriend who was just a “listener.” The Counselor was very effective in letting them know that I couldn’t do it all any more, that it had been a huge physical, financial and emotional hit for me the last 5 years, etc. She got their commitment to become more involved. My brother never did. My sister and her CPA husband took care of the finances from then on. I was still involved in most everything else, but I was No. 2 rather than No. 1. They called my sister first when Mother had a TIA (she had several), for example. The two of us took turns every week with the grooming, showering, etc., which worked a lot better.
I really enjoyed getting Mother all squeaky clean and feeling good. One of my life-long friends, who didn’t work, and a young friend of Mother’s helped out immensely. When we couldn’t do something because of our schedules, they would fill in. They visited her often because they enjoyed her. Friends are so helpful in such situations. But the responsibility is still on “you.” We were at the facility a lot to be with Mother, take her on rides, out to dinner, to family activities, etc. She had been diagnosed with mild to moderate Alzheimer’s at OHSU, and it became more apparent in her behavior as time went on. But she always knew us when we called or when we came to see her.
Since Mother passed, I continue to be very interested in the “aging” field which is why I went back to school and am embarking on an encore career in gerontology at the age of 66. I have been doing a lot of volunteering also, as I learned so much from my experience with Mother. It’s easier when you aren’t so close to the seniors as you don’t have an expectation as to how they “should be.” You can just “be” with who they are. I feel very good about how we cared for Mother, but also have learned a lot about what we didn’t know and am learning new things with new research. Hopefully I can put that knowledge to use in helping others to have fewer hurdles to navigate. Recently I got a card from my son, for no special occasion, telling me that “Grandmother would be proud of what you are doing.” He had a special relationship with his Grandmother. That was worth a lot!
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