Wednesday, December 18, 2013

Alzheimer's From the Inside Out

After Richard Taylor's early-onset Alzheimer's diagnosis, he set out to illuminate facts and perspectives about the disease. Go to to read more or link to his blog. You can also learn about or order his books Alzheimer's From the Inside Out and Live Outside the Stigma, and his DVDs Be With Me Today and 20 Questions, 100 Answers, 6 Perspectives (About Dementia).

Wednesday, December 11, 2013

Google Fails Me

I might as well ask how many stars span the skies. This side of heaven, however, I will not have answers to my questions. Even Google cannot supply these answers.

For example, once an elderly person begins to slump in his wheelchair, can that be corrected? What causes slumping? Weak bones? Loss of balance? Depression? And if the person has dementia, is it even possible to know the cause?

To all my creatively phrased attempts to find out, Google responds with wheelchair vendors. Google also gave me, whose symptom library proved interesting but did not address slumping.

Another question I posed to Google was how to handle an Alzheimer’s patient’s teeth loosening. What are the contributing factors? How can we prevent further tooth loss? What’s the best thing to do with two already wobbly teeth? Google gives me only sites that propose a reverse order of things: Loosening teeth might predict Alzheimer’s.

My overarching, most emotional, question—I’m not sure how to phrase for Google. I feel helpless and twice removed from my father’s medical decision makers. The doctors talk with the nursing home staff, who in turn, communicate with the family. But when I ask why a doctor made a decision, the staff doesn’t know. They may offer to find out, but never call me back. And only when I ask why an oxygen machine is in Dad’s room do I find out he had a syncope incident over the weekend. Only when I happen to show up the day after my father spiked a fever does a nurse tell me about it. I can’t blame her for forgetting; she’s got several dozen people’s medical incidents on her mind. And nurses are pretty good about calling my mom and me about bigger things.

Still … I often feel helpless and somewhat cowed by institutional barriers. It’s easy to accompany my noninstitutionalized mother to her doctor appointments; direct access is the norm. Once my father entered the nursing home, family doctors were out; nursing home doctors were in. But I think the time has come to contact my father’s nursing home’s doctor and dentist directly. I would just feel better if I had a few more answers.

Friday, August 23, 2013

The Emotional Journey

This video testifies to the grief process of caring for a loved one with Alzheimer's as being some of life's best moments. Interviewees in this video have written books on their emotional journey. Check it out:

Saturday, August 17, 2013

Grief Changes Us—For the Better

Despite its many joys, caring for aging parents brings grief as well. You’re slowly losing a parent and your child-role as your parent adjusts to his or her losses of vitality and freedom. Add to that the probability that each generation empathizes with the other’s pain, and it’s a tough season for all. But we can choose to focus on the richness and meaning of the season as well.

Ashley Davis Bush, LCSW, writes in “Grief Intelligence: A Primer” that grief is lifelong and that it changes us. If we think grief comes to a close, we are mistaken. And grievers’ lives will be enriched by seeing the bigger picture. I encourage you to read her perspectives here:

Bush’s perspectives have brought me freedom from false expectations. In addition, thinking about how grief has changed me for the better gradually rotates my attitude toward loss into a new position. Whether this new position will be one of more readily accepting, welcoming, and/or transcending remains to be seen.

Bush’s article is worth pondering by anyone grieving any loss.


Tuesday, August 13, 2013

When Someone You Know Is Dying

Recently I had occasion to visit a person with end-stage cancer. I didn’t know his thoughts and feelings about his life or diagnosis. I’d sent a few cards since the original cancer diagnosis—before his doctors had predicted he had only a few weeks left. Now I felt I needed to go see him, but I wanted my visit to bless him, not hurt him, and I didn’t know what to say to accomplish that. The night before my scheduled visit, a friend who is a trained, experienced, wise and gracious hospice volunteer gave me a few tips. I’d like to share them with you.

I’m sure her hospice training is a more comprehensive toolkit than this, but here is what she said that gave me peace and some measure of confidence. She told me my goal was simply to communicate to him that he is here and he matters. One way to do that is to advance typical memorial service activities to include the living. In other words, say to his face now what I appreciate about him; mention his attributes and his legacy; and share memories and stories. Memorial services often display a photo montage, so take photos to reminisce over with him.

When I worried to my hospice friend that I’d accidentally say something that might depress him, she said her rule of thumb is to follow his lead. Also fairly simple and respectful. And even if your relationship prevents your saying, “I love you” to the person, it’s also meaningful to say “A lot of people care about you.”

So there you have it. That’s all I know about this. If you have additional suggestions, please leave them in a comment.

P.S. This man had invited Jesus to be his Savior decades ago; he knows he will be with Jesus in heaven for eternity. We didn’t need to have any preparatory discussion, although if he had brought up what he’s looking forward to in heaven, or similar thoughts, I would have followed his lead and engaged on that topic. If the dying person you care about is not sure about his or her eternity, you may wish to ask afterlife-related questions and help the person think through his or her questions. Remember the thief on the cross who made an end-of-life profession of faith and received a personal invitation from Jesus to be with Him forever.

Tuesday, July 23, 2013

Caregiving Lessons Learned in the Battle Against Cancer

Today I welcome Cameron Von St. James’ guest post. Although his caregiving role was with his young wife, he learned lessons we can apply when caring for our aging parents. His hope that his wife would recover is one we can sometimes share, if our loved one’s medical issues are curable. If not, hope is still important—we hope we are giving them the most loving end of life possible. And that means practicing the lessons Cameron shares here.

Caregiving Lessons
by Cameron Von St. James

My entire life changed on November 21, 2005. That was the day my wife, Heather, was diagnosed with malignant pleural mesothelioma, and I became her caregiver. Our only child, Lily, was born just three months earlier, and we were totally unprepared for the diagnosis and the changes it would make in our lives.

That day, our doctor recommended we see a specialist for treatment options. We had three choices, one of which was a specialist in Boston. I looked toward Heather to gauge her reaction, but she sat silent in disbelief and shock. I stepped in and told our doctor we would go to Boston, making one of the first of many decisions regarding Heather's health.

Our daily routines changed drastically that day. Heather had to stop working, and I worked less hours. After work, I spent my time caring for Lily, traveling to Boston and accompanying Heather to her doctor's appointments. I soon felt overwhelmed, worried that I would lose my wife and all our financial resources, ending up homeless and caring for Lily alone. I felt helpless, but I had to be strong for Heather.

Family, friends and even strangers lightened our financial and emotional burdens. They offered us so much help, and we learned to say, “yes” to every offer. I learned the hard way that there is no room for pride when a loved one’s life is on the line.  We will never be able to thank those who helped us enough.

Being a caregiver is hard, and the experience is filled with stress, chaos and uncertainty. Unlike many other challenges, you cannot just walk away from it when it gets tough. You cannot let anxiety or anger take over, and you have to keep hoping every day. Rely on all the resources you have to keep focused and stay on the right path through the challenges. If I could leave you with a few simple tips to take away, they would be to accept every offer of help, take care of yourself and your own health, take time for yourself so as not to get completely burnt out, and to never, ever give up hope.

Our lives did not become somewhat normal again for years. Heather beat the cancer, and she has been in remission from mesothelioma for seven years.

The experience taught me that time is precious, so I went back to school to study Information Technology and get my degree. The lessons I learned as a caregiver helped me succeed in school, and I spoke at my graduation ceremony. I talked about never giving up hope and realizing that if you believe in yourself, you can do anything.  Heather and Lily were in attendance, and that was the greatest reward of all.