On Being There

Being there.

That phrase distills the nature of support for one’s elderly parents to its essence. Once the years close in and the elderly find less reason and energy to venture forth, being available to them, whether by phone or in person, is the best way to show your love for them. (Note that I did not mention e-mail or instant messaging or internet webcams. For my parents, at least, these means of communication are not part of their lives. Eventually the elderly will be able and willing to use these avenues to keep in touch, but they do not deliver the same personal contact as the phone or the face-to-face.)

My mother called me last night to discuss various items, but the most important facet of the discussion was the discussion itself. Early in the telephone conversation, I detected the strain and stress in her voice. After allowing her to speak at length, engaging her in further conversation despite her suggestion I had better things to do, the tension in her voice was gone, and we had both relaxed and passed beyond the “what needs to be done” stage to the “what’s going on” stage. Obviously every person should be so gracious as to allow his mother the time to speak – my mother happens to speak a lot. Sometimes, though, it is the obvious that bears repeating. The simple act of listening and giving your time to an elderly parent is in itself restorative. And your parent is genuinely appreciative of this, at some level.

I know that one of my brothers has the knack of upsetting my mother when he speaks with her via telephone. He has her interests at heart and is all too willing to help, but he apparently does not recognize the inherent value of a pleasant conversation. In this case, it is a matter of understanding my mother, who is stubborn at times, but values the process of the discussion. When something needs to be done, you cannot simply tell her to do it, you must get her to see your point of view – otherwise you are wasting your time. I suspect this is often the case with the older crowd, set in their ways and, in their opinion, well-versed in the ways of the world.

My father used to tell a joke, the punch line of which has transmuted into a family folk saying – “Don’t try to teach a pig to dance. It will only frustrate you and irritate the pig.” It is perhaps only a more folksy way of saying you cannot teach an old dog new tricks, but it indicates that you need to know the intrinsic capabilities of those you are dealing with. And the old dogs do have their limitations. As in most arenas, when dealing with elderly parents you do what you can.

The notion of being there is somewhat different for my father. Phone conversation has become untenable, stripped of the visual cues you need to effectively discuss anything with Dad. In his case, we find ourselves regularly visiting in the hopes of actually making a connection. This is not a given, whether you spend one hour or seven with him, but seems to be a matter of random chance. When my father is in a semi-lucid state, there are the rewarding glimpses of his personality and the person we knew our entire lives. Even so, these are genuinely short glimpses of late. The window of opportunity is very small, so you must be on guard for your chance. My brother – the one who has the ability to make my mother hang up the phone – makes it a point to tell my father that he loves him during these windows of true contact. John will seize those moments and make the most of them. He has a list of what he wants to say (I love you, I forgive you, please forgive me, etc.) He has a plan for these moments. Most of us respond to these opportunities as they arise, but do not actually have a plan. We attempt to use them to make a connection, prolong our relationship with our ever-fading father, but we do not really use them to make peace, to wrap up our relationship.

I think my brother’s approach is better. You can view the situation of speaking with a parent in the latter stages of Alzheimer’s in the same way that you would approach any opportunity that only extends itself for short bursts of time. You plan ahead to view a solar eclipse. You set a camera on a tripod to catch the right moment in time. You watch intently for the time to make your move in sports competition. My father is rapidly slipping into the latter stages of Alzheimer’s disease. His diction is typically clear, but unrelated to the exterior world. His brain is working on something we cannot see or often guess. But there are the windows of clarity still. They are short, they are random, they are unpredictable, but they are there. The only way to take advantage of these windows is to plan ahead, to plan what to say, to keep things simple and unmessy and straightforward and distilled to the essence of our relationship, which is loving and caring for one another.

And the only way to accomplish this is by being there.

To My Father, in the Memory Unit

To my Father, in the Memory Unit at Fox Hollow

Thoughts whisper and beckon
Just beyond reach
Memories linger
On the edge of recognition
Faces fade, then meld
Into something familiar
But unrecognizable
Until the world is daily anew
And confusing
As in the first days
Of your life.

Vague notions of a past
Before this morning began
Flit past the window
While you stare through the glass
Wondering where you are
Spending your days
With meandering thoughts
That do not even make sense
To you
Even less to those people
The ones who surround you
Caring but distant
These are the last days
Of your life.

Synapses fire
In random succession
Thoughts parade by
Trying to connect
They remain isolated
And isolated, they wither
Rendered impotent
By the lack of completion
They trail off, a sentence left hanging
Without a satisfying conclusion
Your logic fails you
Your words fade away
These are the final days
Of your life.

Cognitive misfires
Obsessive delusions
Misconceptions
Daily confusions
Too much sadness
Descent into madness?
Questioning God
And the heavens above
Seeing your family
Feeling the love
That bridges the chasm
Between your past and your present
The only feeling
Truly transcendent
That lingers on clearly
Like a dear old friend
As people become strangers
As you near the end
Of your daily struggle
To make sense of your world
The one true constant
Of your life.

You may have forgotten
More than you know
But others share your memories
Keep them alive
Relive the good times
Of your life.

You may have forgotten
People that you know
But we are your memories
We are alive
Your family lives
The legacy
Of your life.

A Visit to Fox Hollow

Today I saw my father for the first time since he was released from the hospital two weeks ago, a stay during which the family agreed to stop the aggressive medication regimen he had been on. Since his return to the Memory Unit at Fox Hollow, I had heard from other visitors that his behavior was more erratic, his thoughts and speech less clear than even a month ago. So I went down to Pinehurst NC to see for myself. I brought my elder daughter Cindy along, bribing her with the opportunity to hang out with her favorite cousin Katie in Durham. And the opportunity to skip a day of school.

When we walked into Fox Hollow, ambling through the hallway between the elderly denizens, we both felt very young. My father was sitting in a wheelchair, watching something on the television in the common room area of the Memory Unit. Yawning. He smiled to see me and shook my hand. I pointed to Cindy, he smiled, and asked her name. After she told him, he said he had been kidding, but I suspect he was not. We were not able to hold a very coherent conversation. Essentially, each sentence my father spoke tended to peter out before reaching a conclusion, and each sentence was entirely independent and, from my viewpoint, unrelated to the sentences immediately preceding and following. It seemed very difficult for him to speak with me.

Then Charlotte, his regular AOS caregiver, who spends mornings with him Monday through Friday, and with whom, essentially, he has more interaction than any other person, walked through the door. Dad lit up, smiled, held out his hand, asked where she had been, what she was doing, and if she would marry him. She answered all of these questions, and I abandoned Cindy with her grandfather to get a quick update from Charlotte as she delivered a supply of very large diapers to my father’s room. He had been getting to physical therapy for his legs every morning, and it took a full two hours due to his lethargic pace. But he made this effort in her presence. She was upbeat about the PT, and we discussed finally getting a handle on the rate of diaper use and arranging a regular delivery from a supplier.

After Charlotte left, my father returned to his rather less enthusiastic vocalizations with me. He reverted to seemingly random comments. Most of these were apparently attempts at sorting out a problem; his mind would be trying, in fits and starts, to analyze something, and his words were his disjointed conclusions. Everything from the grab rail in the bathroom to the fabric of my jacket triggered this type of comment. What I never seemed to trigger, though, was the type of genuine focus that my father demonstrated when a female of interest walked into the room, whether it was Cindy, Charlotte, or my mother.

So I am left with the conclusion that I, third son from the father, do not quite rate any more. Although my Dad recognizes me, and seems to appreciate my visits, his mind does not rise to the occasion and put forth its best efforts when I walk in the door. That level of mental exertion is reserved for women in general, and the important women in his life, more specifically. I do not feel personally slighted, of course, because this is apparently a manifestation of the Alzheimer’s and my father’s brain prioritizing what to use its remaining capacity to focus on. I feel like I have slipped a little bit into the periphery of his consciousness, though, perhaps sooner than I expected – although I cannot say I consciously anticipated this happening.

Once again I am left with the feeling that my father’s disease has progressed more quickly than anticipated. He stayed in his wheelchair this weekend, although I know he walks for PT with Charlotte. My own exertions with assisting him in getting in and out of the wheelchair to use the bathroom were very strenuous, even when I employed the aid of “T”, the very large fellow who works afternoons at Fox Hollow (I call him Mister T in deference to his scary size (nice guy, of course)). During one of these extended operations in the bathroom, though, it became very clear to me that we had made the right decision to “place” Dad in a care facility. There was no way my mother could deal with him in his current condition – it would have required two round the clock care givers, not just one – unless they were all the size of T. And if he were at home, he would not have been able to attend the cheese and cracker social in the non-locked-door side of Fox Hollow, with its soulful sing-along of Amazing Grace and other familiar tunes. And we would not have appreciated his loud singing at home as much as the residents of the senior living facility.

My mother and I were discussing all of these events during the weekend, and how we make choices and press on with life. You can try to second-guess the decisions you have made dealing with Alzheimer’s, the choices in moving, medical treatment, placement in a facility, but you can never know how alternative courses of action would have turned out. Maybe better, maybe worse. My father’s sisters recently began visiting more regularly, and after we decided to stop some of his medications, became very concerned and wanted to have a nurse in Ohio talking to our AOS case manager, Jennifer, etc. What they did not try to do was voice their concerns directly to those of us who had been dealing daily with my father’s afflictions and making the hard decisions of the past several years. We, his wife and his children, realize they are reacting emotionally to his worsening condition, and we are obviously willing to maintain a dialogue with them regarding his care, care which has fallen upon us to insure. What we are not willing to do is suffer second-guessing of our long-debated decisions regarding the life of our father and his eventual death. Nothing in the painful process of dealing with Alzheimer’s comes easily nor is any decision made lightly. For someone who has sat on the sidelines during the gradual decline of a loved one to insinuate those who have been carrying the burden of care are somehow in the wrong is reprehensible. It is a difficult enough journey when you naturally find yourself second-guessing your decisions, it does not need to be made that much more difficult by others doing so.