Okay, I’m a weird case. A mixed up mind. A deeply suffering soul. Alzheimer’s will do that to a person.

 

Before the onset of my symptoms, which were only mildly amnestic, but are increasing in severity, depression and loneliness were the most prominent.

We know that too often dementia and loneliness come hand in hand. No one should feel alone but if people are not properly supported, dementia can be an incredibly isolating experience. It is essential people with dementia are supported to maintain meaningful social connections and continue living their life.

Now I have visitors. People come and go, many have already come and gone, and I wonder how long these visitors will remain in my life.

There is a young filmmaker I met on one of my walks. He was shooting with his camera by the waterfront. I tapped him on the shoulder and asked him what he was shooting. Our connection was instantaneous and sparked with electricity. He walked me home and ended up using the shots he took that day in a composite edit for a short film. He is also a certified massage therapist. In less than 2 months, we have become close. He comes here and spends time with me. He tells me he is here to awaken the lioness in me. I shrug and wonder if what he sees is the past. Certainly there is nothing in my present life that indicates I have power. Yet it is what he sees and I appreciate his vision of me, though I know it is skewed by his youthful naivety. He gives me massages that reduce the anxiety and depression. He was born in India and his being radiates with boundless energy and enthusiasm. He knows depression too. He understands suffering and offers himself as a balm. He is a healer.

Then there is the Alzheimer’s cognitive remediation counselor who is trying to get a handle on what is going on with me. She’s full of suggestions.  For depression, she brought me The Fisher Wallace Stimulator to help with severe depression. I’ve been using it for a few weeks, twice a day, when I get up and before going to bed. She assesses what I can and can’t do. Last week, she watched me prepare scrambled eggs and toast, and took notes. I talked myself through the process, like a live audio for following a recipe. She said I only made one mistake. I left the plate on the other side of the kitchen island and when it was time to put the eggs on a plate, I saw it many feet away. She’s looking for a group for me, maybe a mental health group, with people with depression and some with dementia. I’ve never met a professional in this field who would tell her client she loves them, and will stick by them, as she has done. That is rare. I look forward to seeing her, and am grateful when she comes to my home.

A young woman now comes here, who my husband hired to visit me several times a week. She is 28 years old. She suffered from a horrible reaction to the drug Klonopin in which she was not able to speak or walk for 4 years. This has sensitized her to the plight of others who have been damaged by drugs, and who suffer from the consequences of disease. Originally my rabbi contacted her, asking her to consider visiting me. She is someone who performs mitzvah’s (good deeds) and has visited elderly or older people in need of support and companionship. She was told I have memory issues. My husband liked her and called her to negotiate a salary and entice her to become a regular visitor and helper, when he is at work. Initially I was angry with him for turning this mitzvah into a job. The rabbi contacted this woman not to be a hired employee, but as someone who was selflessly interested in helping an older person in need from the community. Now I am resigned to the fact that I need this help and understand, as my husband pointed out, that everything is economic. If companionship and oversight is part of the equation to help me from feeling isolated and lonely, make sure I do not forget to eat, make sure I walk and exercise, then I welcome this visitor, and hope it works out. If my husband feels that he can gain better accountability by paying her, so be it. As long as he can afford it. She was here last week and brought a beautiful dog that she dog sits. I loved Troy instantly.  The young woman is coming for a few hours tomorrow afternoon. My husband left her the standard booklet that details caring for the Alzheimer’s patient. She says she sees that I am trying to cope. She sees my darkness and is not afraid. That’s a good thing. The darkness has to be extinguished with light.

I have a therapist who I visit twice a week. I have been a big disappointment to her. She hoped I could continue to work. Now she sees me sinking. She’s a pastor as well, and a businesswomen with a growing practice. I go to her office, a mere stones throw my home. I am spurred by the motivation to get out of the house and out of my shell. Most of our sessions are dismal. She has told me I lack grace. When she is not looking like she is falling asleep, bored by my refrain – she is watching the clock in her office. I read in her face the futility of our endeavor (people with Alzheimer’s are often particularly sensitive to facial expressions and body language). Her father had Alzheimer’s and she knows where this leads. The hope inherent in the therapist for the patient to have insights that are healing and restorative are missing here. I have spent many years analyzing myself and probing the reasons for my depressions and maladjustment. Treating a woman whose brain is changing, who struggles with being confused about performing the activities of daily living, is beyond the scope of therapy. Yet I go, and remain grateful for the opportunity to have a trained therapist listen to my rants. She’s a big proponent of psychiatric drugs for me, and despite my sending her numerous articles about the drugs that have been prescribed for me by a psychiatrist, with their devastating outcome for people with neurodegenerative disease, her toolbox does not favor a non-pharmacological approach for me. I am not encouraged and I sorely need to be.

Fortunately I have a dementia mentor who is hanging there as a beacon of light. We meet on Zoom chat once a week. She is less progressed physically, is younger, and has an wonderful family that makes her feel included. Cognitively I think we’re similar. I see her struggling with word finding, stammering at times. She is a morning person so we meet then, which is my worst time of the day. Our relationship has evolved beyond mentoring, and she tells me about the underbelly of her life with Alzheimer’s and FTD- but the roles are clear. She is there to offer advise for how to live with this disease.  I appreciate her honestly. I appreciate her tenacity. I soak it up as best I can to carry on.

Wikipedia states that loneliness is a complex and usually unpleasant emotional response to isolation. Loneliness typically includes anxious feelings about a lack of connection or communication with other beings, both in the present and extending into the future. As such, loneliness can be felt even when surrounded by other people. The causes of loneliness are varied and include social, mental, emotional and physical factors.

Research has shown that loneliness is prevalent throughout society, including people in marriages, relationships, families, veterans, and those with successful careers.^[1] It has been a long explored theme in the literature of human beings since classical antiquity. Loneliness has also been described as social pain—a psychological mechanism meant to motivate an individual to seek social connections.^[2] Loneliness is often defined in terms of one’s connectedness to others, or more specifically as “the unpleasant experience that occurs when a person’s network of social relations is deficient in some important way.

I’ve turned into a caricature of Eleanor Rigby. How can I, a formerly vibrant, inquisitive, warm hearted and ambitious woman and mother (and now a grandma), have descended into the darkness of depression, abject loneliness and the forgetting that is the hallmark of this disease? I never saw it coming. Unlucky I guess. My number has been selected. No way around it.

All the Lonely People

(lyrics by John Lennon and Paul McCartney)

Ah, look at all the lonely people
Ah, look at all the lonely people

Eleanor Rigby picks up the rice in the church where a wedding has been
Lives in a dream
Waits at the window, wearing the face that she keeps in a jar by the door
Who is it for?

All the lonely people
Where do they all come from?
All the lonely people
Where do they all belong?

Father McKenzie writing the words of a sermon that no one will hear
No one comes near
Look at him working, darning his socks in the night when there’s nobody there
What does he care?

All the lonely people
Where do they all come from?
All the lonely people
Where do they all belong?

Ah, look at all the lonely people
Ah, look at all the lonely people

Eleanor Rigby died in the church and was buried along with her name
Nobody came
Father McKenzie wiping the dirt from his hands as he walks from the grave
No one was saved

All the lonely people (Ah, look at all the lonely people)
Where do they all come from?
All the lonely people (Ah, look at all the lonely people)
Where do they all belong? 

source: https://www.lyricsondemand.com/b/beatleslyrics/allthelonelypeoplelyrics.html