Developing a Long Distance Relationship with your Parents' Physician(s)

It happened again last week. I received a call from a close friend concerned about an aging parent. In truth, I work with clients of all ages but since half of them fall into the 'older adult' category (80 years old and above, I tend to be the 'go to' person for questions regarding health care in this stage of life. My friend, Jen, had noticed a few unsettling things about her dad in recent weeks; problems with short term memory, an unreasonable and angry disposition, a growing inability to hold back from saying whatever came to mind, no matter how hurtful it may have been. She felt that a crisis was looming. To make matters worse, Jen lives here in the Northeast, while her dad resides in Florida. She felt helpless because her father was resisting any assistance or suggestions about his health (or anything else, for that matter). I was alarmed as well. I know her dad well and the major change in mental status she described suggested that an immediate trip to his primary care physician was necessary, to begin the process of identifying what might be going on. Maybe her dad had a masked urinary tract infection (in older adults, one of the first manifistations is a change in mental status). Maybe he was beginning to experience signs of dementia. Or maybe he was experiencing mini-strokes, low blood sugar, anemia, or any one of many many possible medical issues. No matter what, it was appropriate for his primary care physician to know, to evaluate him and to begin to rule out causes of this change. Develop the relationship before you need it In my last newsletter (this article is from Dianne Savastano's newsletter, Healthassist. You can reach her at dsavastano@healthassistcorp.com)I suggested that you develop a relationship with your parents' primary care physician.If you live close by, this is fairly straightforward. Plan to attend an upcoming physician appointment, then meet the doctor face-to-face and describe how interested and motivated you are to be a member of the support team. Let him/her know that you are only a phone call away and have your parent(s) sign a release form giving you permission to speak directly with the doctor(s). when your parents live at a distance, on the other hand, it is not quite so easy, , particularly when you are dealing with a resistant parent. Even so, it is manageable. Some thoughts about what you can do: Call the primary care physician practice and identify yourself as Mr. Smith's daughter. Explain you live far away but would like to open lines of communication with the physician to describe observations and share concerns. Try to set up a pre-arranged phone appointment with the physician and offer to pay for his/her time (physicians are not often compensated for time spent on the phone or answering emails, so they are sometimes reluctant to communicate in ways other than a face-to-face visit). Suggest that you could articulate your request and concerns in writing. Send it via fax so that you can have a productive discussion with the physician. If the physician is unwilling/unable to talk directly, ask if there is another key clinical person or care/carse manager in the practice who might be familiar with your parent and his/her health. It could be a nurse, nurse practitioner, physician's assistant or social worker. One of these might be a starting point. Once you have the meeting set up, prepare a concise document-an agenda for your meeting that you can share beforehand and that clearly describes observations and articulates your concerns and specific questions (if your parent has not granted permission for the physician to share information, he/she may not be able to tell you much about clinical issues. Still, the physician will appreciate the concern and the input and hopefully you can come up with a plan together). Above all, the thing to remember when noticing changes in an older adult is that it's not always simply the result of 'natural aging'. An explanation is needed and the primary care physician is the key player and the best starting point. The relationship that you develop today with that physician-whether face-to-face or through a combination of other, long distance means-will play a critical role in ensuring that all members of your parents' extended team are working together! P.S. We were able to isolate the medical cause of Jen's dad's change in mental status and he is doing great! This post is a copy of an article in Dianne Savastano's June 2012 newsletter Healthassist with Dianne's permission. It was too good with great advice to not publish it here. Beverly Moore

Last time I wrote it was almost summer and 77. Today it finally gave up the 90-100 range and settled in the 80 degree range. This is much better on the body and the spirit. I've been stretched to the limit with a deluge of referrals for in home coaching which is good of course because we are seeing families that otherwise wouldn't be served. That is because the Commonwealth of Massachusetts is on the right road combating Alzheimer's by paying for families to learn how best to care for their family member with a cognitive disorder. They've seen the impact Alzheimer's has on families, industry, and public services. We at StilMee are very pleased to reach these families. One recently called his case manager and raved about how valuable the information the coach gave him. We hear this all the time. Information is key. Like I said in a previous blog post, I am determined to show doctors (and sometimes social workers too) the absolute necessity of giving resources for information. We cannot operate in a silo with this disease. We need to collaborate to give families a chance to stay in relationship with the person with Alzheimer's. It can be done. All one needs is knowledge of what has happened in the brain, how it changes ability and thinking, and how we need to change the way we relate and care. The three big myths about Alzheimer's are: they cannot learn anymore (wrong), they are really no longer a person (shame on anyone who says that now), and they have no future. We provide a future of either daily frustration or moment by moment assistance to find joy.

Wih all this rain and temperatures under 70 it is hard to think it is summer,but it is. Are you taking care of yourself, caregiver? If you've heard it once you've heard a thousand times, taking care of yourself is the best way to take care of your family member with Alzheimer's. A person with Alzheimer's is acutely aware of non-verbal communication such as body language, facial expression, tone of voice. You may say, "Good morning, breakfast is ready." but does your body language and tone say it is a good morning? Do you sigh a lot, keep your eyes downcast? Do you give eye conctact or are you moving away as you speak to him/her? I always know something is going awry in my marital relationship when my husband and I speak as we pass each other, sit less with each other, don't take the time to give a hug, a kiss hello or goodbye. That is when I suggest we talk and we do. It is usually tiredness or worry that is the culprit, but if let go, it can tear us apart and we wouldn't know how it happened. We've made an effort, with both of us in business, to make time for us. We eat every breakfast together, sit down and share our day after work stops, and have made Friday our 'date' night. We may do nothing special but it is time set aside for us to keep in connection.
So, catch the signs of burnout early. Do something for yourself so you can care for the one you love. Take time for healthy family members who can give you a laugh, a time to share a meal or a walk. It will refresh you so you can come back and give of yourself to your family member with Alzheier's

Information PLEASE , doctor

I am on a mission to change the way the neurologists, geriatricians and primary care doctors treat people with cognitive disorders like Alzheimer's. When doctors give the diagnosis, they offer little to no information, education or support to the family. I find this to be true of any diagnosis to do with the mind or behavior changes. Disorders of the mind make caregiving a challenge. Life is never the same again. It is a family crisis. The person with dementia is seldom able to participate in a helpful way to his care. Signs of Alzheimer's are a subtle but permanent and progressive shift in initiative, ability to structure pleasureable activities,and ability to comprehend the world around him. These difficulties lead to apathy or anger. Without someone to help make sense of what is happening to him, a person with dementia is lost. Often expressing what he is thinking or feeling becomes so difficult to impossible, he expresses his feelings in behavior. Most family caregivers try ways that are familiar like explaining why, quizzing to 'strengthen memory', and planning the future (maybe a trip going to be taken next weekend). None of these familiar ways of relating work now. In fact, these three ways of relating only add frustration for the family member with dementia. Unable to say what they are frustrated about, they DO something. Behaviors become troublesome for the family to understand and respond to. The family reacts rather than responds in a way based on an understanding of what challenges their family member is experiencing. Cconflict begins. Research and my experience with families says that education about the disorder and the person's changes in ability and behavior ease caregiving substantially and the family can give care at home up to two years longer than those without education. How do we bring this finding to the diagnosticians? Educating doctors and other health care professionals is key.

Negligent to blog once again...sorry, here it is

Oh boy, how does so much time pass without an entry? I guess it is because I am busy doing many things. My granddaughter on the other hand blogs almost daily. Her blog is called The Blonde Redemption. She is 19. If I ever get Alzheimer's I'd want a lot of time with her. She is witty, loving, kind, and insightful. She is what caregivers of those with alzheimer's need to be. She would never infantilize me, belittle me, or think I could do something I couldn't anymore. Massachusetts has released funding to the Aging Service Access Points for Alzheimer coaching. ASAPs seek to keep elders at home safe longer by offering services to make that a reality. This coaching is a service for the family. It is now determined that one person every 7 seconds is diagnosed with Alzheimer's in the United States. That is incredible. We know families are out there needing education as since the funding became available in April we've had 120 referrals. I think about how they should have been able to access education long ago. I hear comments from families like, "Where were you two years ago! We could have done things differently." How can we reach these people who need information? If you have ideas send them along. Our 7 coaches cover all of Massachusetts. That is a lot of driving! Our coach in Dallas is already getting known for her knowledge and availability. Tonight I am going to a support group I've started at a local hospital for families to ask questions about any kind of mental or cognitive condition and gain support for their efforts. I'll let you know how successful we are. The two illnesses that seem never to get information to the caregivers (families) are mental conditions and cognitive conditions. And those two are the most challenging to be caregiver for as they often cannot communicate their needs adequately. I hope to change that.