Category Archives: Alzheimer’s Caregiving Issues

TRUST and CAREGIVING

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Ralph and I are back into a routine after our rocky summer and landed on another plateau of what is normal. The changes I noted over the last months have set don’t bother me so much. And there has been a positive development. Ralph now plays music not only in his therapy sessions but also once a week with a neighbor our age who has been teaching himself the harmonica. The neighbor and his wife are newcomers to Nola and have become what I never expected Ralph and I to have again—couple friends. While our two husbands play music together, we two wives share a glass of wine around the corner. Having  witnessed Ralph get agitated at an unfortunate outing to a restaurant, the couple seem undaunted, particularly since we usually meet in our sun room where Ralph is much more at ease and therefor his most cognitively alert, charming self.  

So Ralph is happier these days, as am I. So I take more time to ponder the larger issues.  And what I find myself thinking about lately is trust. Trust in a marriage is always an issue. Trust as a caregiver spouse brings up another complexity altogether. 

In our pre Alzheimer’s marriage, we had a lot of problems but trust was not high on the list. We never cheated on each sexually. Even when we hated each other, we used up too much emotional energy in our relationship to have any left over for others. Our general modus operandi was to argue, sometimes with alarming openness. Several friends whose marriages fell apart after seeming much calmer than ours have said maybe being so openly angry at time saves Ralph and me. Maybe?  Ralph was nothing if not straight forward and vocal, sometimes loudly vocal, in his views, but I could be secretive, nursing grievances and fears I couldn’t bring myself to share. As we bickered our way toward making decisions together, I didn’t always trust his judgement and he often ignored mine. What I did trust in those days was Ralph’s competence. If he said he could fix the plumbing or make the business deal, I believed him.

Well now the parameters have changed.

Ralph really has no secrets—he says whatever pops into his head, loving or nasty—but he also has no judgement. I have had to teach myself not to trust him to do anything. I can’t ask him to chores because 1., he won’t remember that I asked and 2., if he does remember he’s likely to mix things up. His once amazing mechanical aptitude in shot, he can’t read directions, and he has no capacity to problem solve.

On the other hand, he trusts me completely, a trust I am not sure I deserve. He assumes I will do what is best for him. I try but trust is a burden. I make sure his daily needs are met, but sometimes I hide in another room when I know he’d like my company. Sometimes I say I am going to run an errand when I am actually having lunch with a friend, or even our daughter. 

And I no longer discuss with him any issue of substance, for instance tax issues, business decisions, or whether we may need to move to a different living situation in the next few years.  He has no idea that I have been looking into options and I have no plan to tell him until such a move in imminent. I know that closing to keep difficult problems from him is largely for his benefit and that discussing decisions would have no actual benefit. He has no capacity to think through or even follow and would only be upset. But I also feel a bit uncomfortable with power I suddenly can wield over his life.

Ralph’s New Support System, And Mine

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Since moving to Nola in late March, the one worry I’ve continued to have has surrounded Ralph’s Alzheimer’s care. I feared that six years at Emory’s Brain Health Center, surrounded by physicians on the cutting edge of research, had spoiled us although. There were drawbacks to Emory: Neither Rick nor I will miss the three-hour round-trip trek from our farm every visit (a drive that kept Ralph and me from participating in support groups and activities Emory offered); and as Emory’s client load grew, I sometimes felt a little lost in the shuffle. But I knew Ralph was getting topnotch treatment, and it concerned me that while our providers in Atlanta encouraged our move to Nola, they knew of no similar providers in Nola to recommend.

Finally a friend with medical connections recommended one neurologist at Ochsner Hospital who specialized in dementia, but he ended up too busy to see us. Instead, the neurology department assigned us another doctor we knew nothing about. But we needed to see someone since almost 18 months had passed since Ralph’s last “annual” cognitive check up. I scheduled Ralph into a virtual appointment at the end of August—a mistake on my part since Virtual does not work for Ralph who has enough trouble with doctors in person and refuses to (can’t) use any newfangled phone or internet technology. The neurologist asked the right questions and was perfectly pleasant but did not make a real connection with Ralph (i.e. Ralph decided he didn’t like him). I had already silently accepted that Ralph’s Alzheimer’s care would be less extensive going forward; I told myself that, aside from the annual testing, I no longer needed lots of professional input since I was the one in the trenches monitoring Ralph’s daily functioning. So when the doctor said he would schedule Ralph’s cognitive testing, I assumed with equanimity that that’s all it was—testing.

I was pleasantly surprised yesterday to discover I was wrong. It turns out Ralph’s testing was actually the first step in becoming part of the “Care Ecosystem” for brain health at Ochsner. We met with a neuropsychologist who bonded with Rick over dogs, a nurse practitioner who came up with a change in Ralph’s prescriptions that sounds promising, and a Care Team Navigator who says she will be checking in by phone with me on a monthly basis or as needed. Wow! on that last one. I thought outreach support only happened in other countries with better health systems in place.

According to the handout I received, Ochsner’s goal is “to personalize the Care Ecosystem for each patient and caregiver.”  I’m not sure why the program is not better known, but my guess, from the high level of enthusiasm on the staff, is that it may be relatively new.

I am going to do more research on exactly how the program works differently from what Emory offers and will be talking to our navigator more tomorrow. For now I am enjoying my relief that Ralph will be getting good care, and only a 15 minute drive away. And my relief tells me there is something else I was wrong about–for all my declaring that I didn’t need professional support, I did and do. I left the clinic feeling so much less weight on on my shoulders and in my heart.

As for the cognitive testing itself—I’ll need another post to digest the results.

PS A funny typo I caught just in time: The title almost read “Ralph’s New Support System, and Mind”

Cognitive Decline: When the process of acquiring information starts to fail

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I’d like to blame the thick New Orleans heat for my recent silence but that’s not why my fingers have stopped typing. Nor is it the Virus or even my obsession with the current political battle for America’s soul, although they are troubling realities.  My malaise, while similar to what so many others are suffering these days, is less a reaction to current events and more a reflection of life with Ralph and the drip drip drip accumulation of Alzheimer’s impairment.

A life in which nothing changes. Everything keeps changing. Nothing changes. Everything keeps changing.  

Hard to believe, but Ralph was officially diagnosed over seven years ago, in 2013, and, as my daughter recently pointed out, we had begun noticing lapses when she was a freshman in college three years earlier. So Ralph is already passing the ten-year mark usually held up as a fatal marker on the Alzheimer’s spectrum. And by Alzheimer’s standards he is doing remarkably well in all the ways I’ve described here so many times:

The short and long term memory problems with which he was originally diagnosed continue but are only incrementally worse. Now the repeated three or four discussions center around the tools he wants to get back from the farm (not possible), around whether our older dog Zeus is too thin, around where are savings are invested and if they are safe. He still comes across charming to strangers, not that he’s interacting with strangers or anyone else these days. 

But there is something else going on, and I no longer believe strangers would miss noticing he has impairment. There is, if not a slight vacancy, a mental hesitation in his reactions. A disconnect between what I say to him and what he hears.

Trying to articulate Ralph’s current condition to a friend recently, I found myself stating that he has increasing difficulty “retaining information” which is different than his memory problems. I am not sure what I meant exactly in the moment but in intuitively it felt correct. Maybe retaining is not quite it either; maybe the problem is “intake of information.” What I have noticed is that when I make what seems to me a simple statement, he has sometimes has trouble taking in the meaning. He looks at me as if he can’t hear what I am saying—I have considered whether he has a hearing problem and plan to get him checked when it is viable although he seems to hear quite well. If I repeat myself more slowly I can almost see him struggling to get his head around the meaning. But the problem is that I tend to put too many ideas in a sentence. 

I.e.: 

This morning I said we had a doctor’s appoint with our new neurologist here and that it would be over the phone. 

“I have a new doctor? Who was my old doctor?” (straightforward memory issue).  

“Stephanie at Emory in Atlanta, but we’ve had to find a new doctor since we’ve moved.”

“So are we going to Emory today.” (not only memory but also comprehension confusion)

Or yesterday, I was on the computer he started asking me questions about his farm tools. 

“I can’t really talk now, I’m doing Shipt.”

“What do you mean Shipt?”

“I’m doing a grocery order through Shipt because I realized we’re about to run out of milk.”

He looked at me as if I were speaking a foreign language. Shipt? I should have thought before I spoke because I had thrown three concepts at him, at least two concepts too many. Not only does he not remember why I don’t grocery shop in person these days and becomes anxious when I remind him about Covid (Am I going to get it? is his usual, understandable refrain?) but he has not noticed that our life has been altered by the virus, and he cannot grasp the concept or the steps involved in using a delivery service. 

All I should have said was that I was making a grocery list. He doesn’t notice that the groceries come to the front door or that I go through a cleaning process. All he notices is whether there is milk, bread, peanut butter and beer.

These are tiny examples; the moments of disconnect are always tiny, and often much more subtle. But there are so many of them, each annoying and heartbreaking in equal measure.

Alzheimer’s Benefit–Exposing A Goodness Quotient

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I am prone to cynicism in general. And like a lot of people, I have been more demoralized by the state of the world than usual lately. So I am a bit surprised to find myself celebrating what, for lack of better phrase, I’ll call the goodness quotient in human beings.

Martin Luther King Jr., Gandhi, Anne Frank, Nelson Mandela, Saint Francis—their lives are awe-inspiring and intimidating in equal measure. They have had their human imperfections here and there, but few of us aspire to their level of goodness. At least I never have. (In fact, I admit to spending MLK Day sitting around the house when I should have been out volunteering.)

But after reading the recent spate of articles surrounding Reverend King and John Lewis as well as a post entitled Gratitude in the Land of Dementia on the blog One of Life’s Little Surprises, I am struck by a reality that I seldom consider, the capacity of so many “normal” people to help others.

In particular, how do so many people find themselves able to accept challenges and responsibilities they never imagined they would face when their loved ones became increasing cognitively impaired. Why don’t they walk away (as I am often tempted to do from a so far less difficult situation)?

Individuals may answer, “I love my husband/ wife/ mother/ father/ sibling/ friend/ partner;” but that’s not it, not in any conventional sense. Of course I can’t speak for anyone else when I acknowledge that whatever emotional chemistry existed between Ralph and me before his diagnosis—whether the early passion or deep marital affinity—has definitely altered since his mind and identity have altered along the Alzheimer’s spectrum. I suspect the same kind of alteration has occurred between other caregivers and caregivees.

So, what specifically is the mix of loyalty, generosity, duty and sympathy/empathy that makes so many of the caregivers I’ve run across (who know who you are, Mary, Nancy, and all you others) tick?

I certainly don’t have an answer, but it is heartening to realize that when faced with the challenge, a large number of flawed, normal people are capable of being kinder and more caring than we expected of ourselves