Tuesday, June 26, 2018

Communication Between LTC Doctors and Caregivers



As a former Alzheimer disease (AD) spouse caregiver, I had interactions with doctors caring for my late wife in the dementia units of 2 different long-term care (LTC) settings: an assisted living facility (ALF) and a nursing home (NH). My wife received excellent care in both facilities.  However, her care would have been even better had doctors utilized my experience as her caregiver more often. The below situations are illustrative of this.

Prior to her LTC placement, my wife was seen regularly by a neurologist to oversee medication for anxiety. After placement in her ALF, I expected the ALF doctor to take over that responsibility. However, I had to continue taking her to a neurologist because the LTC doctors were not very familiar with anxiety disorder medications. The 2 doctors who came to my wife’s ALF once a week were both internists. ALFs with separate, sizable lockdown units for dementia residents (my wife’s unit had 32 dementia residents) should have a geriatric psychiatrist or neurologist onsite at least once a month—or at least available to the ALF nurse, social worker, and ALF doctor on a regular ongoing basis. 

While I was traveling for a few days, Clare woke up at the ALF and was unable to walk. My daughter brought her to the hospital in a wheelchair. Upon entry to the hospital, Clare had been taking quetiapine, alprazolam, sertraline, lorazepam, haloperidol, venlafaxine, and divalproex sodium all to help control her anxiety. In my absence, my daughter insisted that the doctors stop all that medication as they tried to determine the cause of her sudden inability to walk. I immediately drove home. By the 2nd day at the hospital, Clare was able to walk again, first with a walker and then just with me holding her hand. The doctor said he couldn’t explain why she stopped walking suddenly, but because her anxiety level was still very high, he was going to place her back on all her anti-anxiety meds by the end of that week.  But Clare was discharged to the NH before the end of the week for continued rehab, and the NH doctor refused to place her back on her anti-anxiety meds.

The NH doctor available for dementia patients in my wife’s NH was also an internist. I happened to see the doctor at the charge nurse’s desk at the exact moment my wife was admitted to the NH. I asked if we could meet to discuss my wife’s medical history, but he said he already read her history, so there was no need to meet. I also said I’d like to update him on her recent history with medications she had been taking until a brief hospitalization that same week, but, again, the doctor said there was no need to meet because he already had that information as well.  

Two days after my wife’s admission, I started receiving calls from the NH about her anxiety issues. The next day, I asked the dementia unit charge nurse to see a list of my wife’s medications and discovered that the NH doctor had not placed her back on any of her anti-anxiety medications. I asked why, and the nurse said she’d call me back after speaking with the doctor. The next day, the nurse called me saying that it was because my wife had not been taking those medications during a hospitalization that occurred between her ALF discharge and NH admission. I told the charge nurse that her neurologist had only temporarily removed those medications to see if they were possibly causing other issues that led to her hospitalization and that the neurologist planned to place her back on those medications upon hospital discharge.

I then asked to speak with their on-call psychiatrist. The next day he returned my call. We spoke briefly, and he agreed that my wife should be placed back on at least some of her anti-anxiety medications right away. As soon as my wife resumed taking those medications, many of her anxiety issues disappeared. Within weeks, after more conversations with the psychiatrist, more anti-anxiety medications were added back. Had the NH internist taken a few minutes to discuss Clare's medication history with me on the day she was admitted, my wife wouldn’t have had to suffer needlessly for so long.

LTC doctors ought to understand that some AD caregivers can provide a great deal of helpful information. Some AD caregivers are extremely well-informed about the medications taken by their loved ones and well-versed in their medical history.  

I would like to suggest one simple practice to all LTC physicians: whenever new AD residents or patients are admitted to your facilities, schedule appointments with their primary caregivers as soon as possible. Brief 10-minute meetings with them to review medical histories and medications may provide you with helpful information and insights that do not appear in any of your medical charts or reports, records that can often be incomplete or inaccurate.

Dr Vann writes a bi-monthly Commentary blog column for Annals of Long-Term Care. He has also written frequently for caregiver magazines, other medical journals, and major newspapers. After his late wife, Clare, was diagnosed with early onset Alzheimer’s disease, Dr Vann made it a point to increase public awareness of Alzheimer’s and to help fellow caregivers. You can read more than 90 of his other articles about Alzheimer's at www.allansvann.blogspot.com. If you would like Dr Vann to respond to questions or comments about this article, please email him directly at acvann@optonline.net.

Published in Annals of Long-Term Care, online only, June 26, 2018.  Access at:   https://www.managedhealthcareconnect.com/blog/communication-between-ltc-doctors-and-caregivers

Sunday, June 3, 2018

Personal Blog #7 ... New Steps Forward ... 6-3-18


Three months ago, in Personal Blog #6, I wrote that I hoped to add more happiness to my life and reduce some of my loneliness.  I had already moved on enough after Clare’s death to be able to describe my life as “okay,” but I wanted to see if I could do better than okay and, for that to happen, I needed to move out of my “comfort zone.” 

Since posting PB#6, I have taken four major steps to move out of my comfort zone to seek that “continued happiness” which Clare had wanted for me after she passed.  One relatively easy change was “trading” one of my daytime bowling leagues for one in the evening.  Starting in September when the winter bowling leagues re-start, I will continue to bowl in my noon and 4 p.m. leagues each week  but, instead of continuing to bowl in a 9:30 a.m. league, I will now bowl in a 7 p.m. league.  Forcing myself to get out of my house one evening every week to do something I enjoy, while also socializing with others instead of sitting home like a couch potato, should be helpful. 

A second relatively easy step was to agree to get out of my house two more times each month to help others.  For the past six months I have been facilitating a monthly Alzheimer’s Association support group for caregivers of spouses with younger onset Alzheimer’s disease (AD).  This month I will also begin facilitating a support group meeting twice a month for caregivers of spouses with moderate to advanced stages of AD.

The next two steps I took to move out of my comfort zone were not as easy. My third step was to register on an internet dating site and I posted the following “introductory message” on that site: “After 2 years of widowhood following a wonderful marriage, I'm no longer dealing with daily sadness or depression and am enjoying life again.  I am hoping to be lucky enough to find a special woman who can add to my happiness and reduce some of my loneliness while I do the same for her.”

I also posted a longer personal profile and each week I received notifications from interested women.  But after four or five weeks, I still had not established contact with any of them because of one phrase common to their profiles.  Each woman was seeking a “serious relationship.”  But did I also want a new serious relationship ... or  did I want something else?

I re-read my site introduction and profile over and over.  I thought back to my one experience with a “singles group” at my local community center several months after Clare died.  At a certain point, the social worker leading the “singles over 60” group, about 40 women and 10 men, asked us to be seated and briefly introduce ourselves.  As part of our introductions, we were asked to discuss the relationships we were looking for.

When it was my turn to speak, I described my fairy tale marriage, my ten years as an AD spouse caregiver, and how I was now pretty much set in my ways after living by myself for so many years.  I said that I was looking for a woman to be with several times a month to enjoy companionship and a physical relationship, but nothing much more serious than that.  I said that I did not want another serious relationship, and that I was probably looking more for a “friend with benefits.”

As soon as I had finished speaking, several men and women criticized my remarks.  They said that I needed to be willing to compromise with what a woman may want in a new relationship.  I responded by saying that, with all due respect, at my age I felt no need to compromise.  If I couldn’t find a woman to enjoy the kind of relationship I wanted, then I simply would not enter into a new relationship.

Recalling that experience, I realized why I had not yet initiated contact with any women on that internet site.  I edited my profile, writing in part: “Now that I have been on this site for about a month, I'm realizing that I am not looking for a long-term ‘serious relationship.’  I am looking for a ‘friend with benefits,’ a woman to be with just several times a month instead of a woman to be with more often or on a daily basis.  Just being honest!”

I felt much better after posting that revised profile.  It was now even more clear to me that what I had been missing most in my life in recent years was the physical relationship with a woman.  A friend with benefits is exactly what I needed, and wanted, to add happiness to my life and reduce my loneliness. 

One morning, while having breakfast with a very good female friend, she asked if I had found someone yet to be my friend with benefits.  I said no.  She then surprised me by saying that she would be interested in being my friend with benefits.  This is a woman whom I have loved deeply as a very close friend for more than 25 years.  My initial reaction was something like, “Are you serious?  Are you telling me that you would really consider this?”

I asked her to take the next week to think more carefully about entering such a new relationship, and the next time we got together we discussed my expectations more fully.  I told her that I would be ecstatic if she would become my friend with benefits, but I wanted to be sure that she wanted this new relationship as much as I did.  She said she did, so we decided to give it a try.  The first time we got together to begin our new relationship, we agreed to take things very slowly, but our cuddling felt so natural ... as if it were meant to be. We were both very pleased with our first experience in this new relationship, and we have tried to cuddle together for an hour or two every week.  

I never did respond to anyone I met on that online dating service during 3 months, and I have not renewed my subscription.  But had I not taken that step to sign on, I may never have known that I was correct in thinking that to find continued happiness I only needed a friend with benefits.  Clare will always be with me in my heart, but I can now finally say that I have moved on with the rest of my life.

By moving out of my comfort zone, my life is no longer just “okay.”  For the first time in many, many years, I can now honestly say that I am happy and my life is good.