Amazing Will to Live - Update 10/31/2010

"Amy" is still plugging along. Until this past week she hadn't been eating enough to keep a fly healthy but she is now starting to eat more at meals. [She has never been a big eater and doesn't have much in the way of "reserves", meaning fat.] She has been walking, joking with her caregivers and is recognizing the staff again. Is she out of the woods? Probably not. But she is a daily miracle!

Amazing Will to Live - Update 10/26/2010

Amy is still with us, fighting every day to live... almost literally! Her poor caregivers deserve combat pay!

The Amazing Will To Live

I have a client, I will call her Amy, who has the most amazing will to live. By rights she should have died the Friday before last. Her oxygen saturation was dismal without the O2 being turned up all the way, her kidneys were shutting down and she had an infection. The doctors didn't think she would live through the night but she's still here, fighting every minute to regain strength so that she can continue living.

This is a person with severe dementia, severe osteoporosis and is pushing 90 years old. How did she get to this point?

About a year ago, Amy fell and basically shattered her hip, actually the top part of her femur. The surgeon put in a metal plate and dozens of screws to hold her bone together so it could heal. Because of her dementia, we were unable to keep Amy from walking too early. If she had to use the bathroom she could not understand why she couldn't just walk the few feet to the toilet even though a caregiver was at her elbow to help her into her wheelchair. People with dementia are not able to understand cause and effect anymore. The facility staff did the best they could but she broke the plate and a few screws early on. The amazing thing was that she wasn't having any pain. The doctor decided to just leave it and see it it would still heal.

About six weeks ago, Amy started having pain... a lot of pain. We don't really know why but it could have been that there had been scar tissue holding everything in place and it either got torn loose or might have been just reabsorbed into her body. Amy was sent to the hospital where she spent a couple nights while the doctors tried to decided what to do. The doctors ultimately decided to send her back to the facility where she lives with "palative care." Palative Care means that they are managing pain. It became obvious pretty quickly that this was not a viable option for Amy. Either she couldn't understand why she couldn't move about without a lot of pain or she had to be sedated so much that she was in a stupor.

I talked with the administrator and the director of nursing at the facility, who agreed with me that this was no way for Amy to live the rest of her life. I called the family (who live a long way away) and discussed the situation with them. We came to the agreement that it would be better to take the risk of surgery rather than "sentence" Amy to the current situation. I called the surgeon who had done the original surgery. We discussed options and I decided on the option that wouldn't "fix" her hip but would take the pain away and still allow her a certain amount of mobility. Amy had been using a wheelchair a lot after the first surgery so she wouldn't miss not being able to walk very much. Again, I ran this option past the family, who also agreed. I also talked with Amy about this. Even though she has severe dementia I felt that she could let me know whether she was in agreement or if the thought of surgery was frightening or repellant to her. She fully agreed to have the surgery. She didn't like being in pain and wanted to do what was needed to stop the pain.

The doctor scheduled the surgery for a Thursday and instructed me to have Amy at the hospital by a certain time on Wednesday. Amy was in a good mood and was able to give consent [unofficial but still important] to the doctor after the doctor explained the procedure again. Amy made it through the surgery without a problem. Unfortunately, on Friday the problems started. Amy's kidneys started shutting down and she got an infection on top of needing all the oxygen they could pump into her. The doctors didn't think Amy would live through Friday night but she was still "kicking" on Saturday. Sunday the doctor notified me that Amy needed a blood transfusion. I talked with the family and told the doctor that yes, we wanted Amy to have the blood. [We figured that if she was fighting the least we could do is give her the tools to fight with.] By Tuesday the doctor said she could return to the facility under "comfort care." [Meaning= death is imminent] Well, today is Sunday and she is still with us. Her kidneys have started working again and she is over the infection. She still needs oxygen but that is minor. She is getting up for some meals. She's having trouble keeping food down [probably a leftover from the anasthesia] but she is obviously fighting to live.

Some people might have disagreed about having surgery arguing that someone with such severe dementia has no quality of life left. If you could see her, you would know what determination and quality of life is all about. Amy is one amazing woman and I am honored to know her and be allowed to serve as her Power of Attorney. Life is Precious... no matter what age.

Starting a Business Like Bridge Builders, Ltd.

What I love about this business is the day-to-day diversity of demands. Each of my clients is their own soap opera, as I suppose each one of our lives is. The difference between my "active" clients [clients who currently need assistance] and the world at large is that my clients cannot manage their lives without assistance. Sometimes they are willing to listen to advice and sometimes they will do things that I know will have unpleasant consequences. It is not my job to tell my clients what to do. It is my job to give my clients the available options, along with the consequences, good and bad, of each option and let my clients make their own decision. It is easy to tell someone what to do. It is far more challenging to respect a person's right to make a bad decision. My job then is to try to be a "safety net" for my client so that the consequences are not as serious as they might have been. I love the challenge.

I "boot strapped" my business. I learned through my journey of developing a business that banks, angel investors, etc., are not interested in bankrolling a social service business. In this business Angel Investors are in the form of friends and family [if they have money to loan]. The bank wants to secure everything you own against a loan for operating money and, in my opinion, are to be avoided.

I started with a somewhat vague business concept of helping the elderly and disabled and have honed it by trial and error through the years. It hasn't been easy but it is the most rewarding venture I have ever experienced. There will always be good times and bad, great cash flow and trickle cash flow, clients I love and clients I could be happier without. There will be the never ending battle to capture receivables [getting the unpaid invoices paid].

If you are afraid of risk, work for someone else.

When my [then] business partner and I started the business, our goal was to "bridge" the gaps between services available for the elderly and disabled. We did not want to duplicate services that were already available. Many people were skeptical when we opened our doors. I finally got someone to explain the skepticism. "Old-timers" could recount numerous businesses that would start up to assist the elderly and disabled, doing a good job. Then, they would disappear leaving all of the people they were helping without any support. It's great having a strong desire to help others, but if you cannot run an efficient business, you will end up closing up the shop.

I have received calls from people saying they want to start a similar business in their area. While talking to them I learn that they expect customers to come flocking them them when they open their doors and that they will build the business for 10-years, then sell it off making a nice, tidy financial profit. WRONG! #1 - Marketing this type of business takes a lot of networking and demonstrating successes. You don't get handed credibility on a platter and credentials only get you so far. #2 - It takes many years to develop a reputation within a community. I am coming to the end of my 8th year and this year we have been hearing that our good reputation extends far beyond the area we serve. It takes about 10 years to develop a reputation as an expert in a particular field. #3 - We are talking about people here, not hardware or some other commodity. You cannot just sell your client contracts to someone else and move on. When my business partner left, I witnessed the concern our clients experienced. Our clients were very worried about whether the business would survive my business partner leaving. I've even noticed how worried some of my clients can get when one of my employees leaves the business. These vulnerable adults depend on us for their quality of life and sometimes for their very lives. Please don't let them down!

If you are not in this business for the long haul, please don't start it. Ten years may seem like a long time when you're starting a business but the time flies amazingly quickly. Of course, you will want to start thinking about how you will phase out of the business as you get closer to retirement. There are ways to do it so that it doesn't traumatize your clients.

Still want to get started? Call your local Small Business Development Council and get a [free] business advisor assigned to you. I didn't start using a business advisor until year four. I would have avoided many problems if I had a business advisor from the beginning.

Challenging Behaviors, Chapter 2 - Understanding the Resistance

For resistant elderly, the more subtle or indirect the assistance is, the more likely you will have success. Please understand that these elderly are, at their core, terrified. They often have always been fiercely independent and prided themselves as not needing anyone. In reality, we are all interdependent but don't try to reason with someone who has lost the ability to reason. You will lose every time. Elderly folk remember nursing homes and other assisted living facilities [even though the concept of assisted living hadn't been thought of yet] as terrible warehouses of miserable humans who are not cared for properly. While nursing homes and other similar facilities still have their problems, they are nothing like they were in the 50's.

Almost every new client I get insists on staying home and I have to accept this and try to make this happen for them while trying to gently educate them by taking them for "tours" and not putting a lot of pressure on them. Also, natural consequences can be a great motivator.

Many times, family and others trying to help a resistant person help too much. Just how much help is too much help? Well, that differs from person-to-person, which makes it difficult to have a one-size-fits-all answer. If the "helpers" quit helping in certain areas and suggesting an alternate, the resistant person will initially try very hard to coerce, guilt trip or whatever has worked in the past to get the "helper" to continue helping. Once the resistant person realizes that the "helper" will no longer step in, he/she will either a) agree to the alternate solution or b) find another "soft-touch" somewhere to help out. There is nothing you can do if the resistant person chooses "b." Again, you just have to sit back until "b" either shows it works out or the "soft-touch" gets tired and beats a hasty retreat. Playing a rendition of "Good Cop/Bad Cop" can sometimes be helpful. If you can have others [Adult Protective Services, the doctor, etc.] be the "Bad Cop" and set yourself up as the "Good Cop" all the better.

Does it look hopeless? It isn't necessarily hopeless but you have to make a plan and be patient. Talk with Adult Protective Services, especially if the resistant person is being financially exploited or abused. Have a consultation with a Geriatric Care Manager with behavioral experience, who can help you make a plan and give some creative suggestions on how to handle the issue. Contact your local Area Agency on Aging for local resources. The key is to pick your battles and get everyone involved with the resistant person to agree to the plan. One weak link will make positive change almost impossible.

5 Wishes Advance Directive

I received the following email from Paul Malley, President of Aging with Dignity [not associated with this blog] reminding me about the 5 Wishes:

"We came across your "Aging with Dignity" blog and thought the information contained in it was great. We note in particular you 7/10/10 post on advance directives. I'm not familiar with the laws of Washington, but some states don't automatically recognize the durable power of attorney as the durable power of attorney for health care. Some even require they no be the same person if that person is a beneficiary of the estate or would have some other conflict of interest.

"Moreover, it is not necessary to retain an attorney to complete a durable power of attorney for health care. There are many forms available for that purpose, many of which are provided by the states free. Our own Five Wishes advance directive/durable power of attorney for health care form is easy to understand and use and requires no attorney. It meets the legal requirements of 42 states, including Washington. It also makes provision for empowering the health care agent to apply for Medicaid amount the other powers to be designated. It also satisfies HIPAA requirements.

"I hope you take a moment to familiarize yourself with Five Wishes and what makes it unique among all other advance directives/living wills. A good place to start would be at our website, www.agingwithdignity.org. We have many care manager/consultants like you who are among the 23,0000 Five Wishes partner organizations nationwide."

My organization often deals with legally touchy situations requiring the use of an attorney for estate planning/advance directives but in the past I have used the 5 Wishes form to help me get a clearer understand of the kind of treatment a new client would like in the event that client could not tell me. I highly recommend it. Thank you for the reminder Mr. Malley!

Unsafe and Resistant to Help, Chapter 1

What constitutes being unsafe? In our country we value our independence and our laws reflect it. Short of a court order, which is extremely difficult to get, a person can live as they chose. As people age they sometimes lose the ability to meet even basic needs. Of course, this doesn't happen all at once. It is typically a slow process. As a caring person, when this becomes obvious you want to set in and "fix" the situation. There are seniors who will welcome help, seniors who will tolerate help and [my typical client] seniors to steadfastly deny that they need help. Here is a list of some of the problem areas:

Financial Exploitation: This happens far more often and any of us want to admit. Financial exploitation has many "faces."

• A family member always in need of money. Maybe the senior has helped them financially all their lives but there comes a point where the senior my develop dementia and can no longer make a conscious choice.


• "Helpers" or "friends." Too many times a senior in denial looks to a neighbor or "nice" stranger for assistance. At first the "helper" assists for little or no compensation but over time they manipulate or demand more from the senior.


• Solicitation phone calls. Seniors are fodder for a phone solicitor who is friendly and seems to provide a little companionship for those who are lonely and isolated.


• Mail solicitations. Seniors get deluged with mail requesting financial assistance for anything from sick animals to disabled veterans to third world countries.


• Charities: Even religious organizations can be pushy about donations.

Personal Safety: There are many personal safety issues but these are some of the highlights.

• Hoarding. A senior may lose the ability to determine what is trash and what is important so then will not throw anything away. Over time this can build into a health and/or fire hazard. This problem is becoming so prevalent that there are many books written about it.


• Falls. As a person ages, the possibility of falling increases dramatically. Even when a person realizes he/she needs to use a walker when outside the home, that same person will park the walker in a corner of the house and hang onto furniture and whatever else that is in reach. If a person is going to fall, he/she will fall no matter the location [home/assisted living/nursing home] so the question the becomes, "Just how long do you want to be on the floor before help arrives?"


• Allowing anyone who comes to the door into the house. This always strikes a certain amount of terror into my heart. Lonesome seniors who welcome anyone into their home yet refuse appropriate assistance.


• Driving. This is a real hot button for most seniors. When a senior gives up driving, he/she gives up a huge amount of independence and sometimes does not have the ability to problem-solve well enough to figure out alternatives or understand how the alternatives work.

Inability to follow medical instructions

• Because of short-term memory problems or the inability to comprehend, the senior is unable to follow through with instructions. This may mean medical tests, medication changes or as simple as remembering the next appointment.


• Inability to manage medication. I have entered many a home that had medication [old and new] everywhere. Other times a senior had a method of tracking medication but due to illness or dementia that method no longer works and the senior is unwilling to change. I've met other seniors who are so afraid of taking too much medication that they take too little.


• Doctor "hopping." A senior either doesn't like what he/she hears or cannot comprehend the instructions. The senior denies that he/she has a problem, therefore it must be the doctor and changes doctors frequently.

Inability to manage Activities of Daily Living:

• Personal hygiene becomes poor. The senior doesn't pass the "sniff" test. He/she insists that he/she bathes regularly but it's tough on the nose to be in the car with them for any length of time. Clothing is dirty but the senior insists their clothes are just FINE. [We occasionally have a client that necessitates the use of an air freshener after transporting the client to an appointment]


• Unexplained weight loss. The senior is losing weight but there is no medical reason. The senior won't let anyone look in the refrigerator or cupboards insisting that he/she has plenty of food. You take that person out to eat and he/she announces their not hungry but eats most or all that is served. If you can look in the refrigerator, food has spoiled and the boxes and cans in the cupboard are past their pull date.


• Inability to clean house. The house may be fairly tidy but it become increasingly grimy.

What is the answer? There are often no easy answers. What you need is a big bag of "tricks." In the next post I will list some "tricks" that have worked with some of my more challenging clients.