My uncle is musing, “I remember the day she was born. I didn’t want to go to school. I was 7 years old. I remember my mother giving birth to her at home. I remember it like yesterday.” My uncle is lost in reverie – a reverie that takes him back to April 14, 1913. He is now in his 90s and it is now 1999. We are driving a route we have driven for the last 6 years -from the eastern suburbs to Hunters Hill, an area in New South Wales, Australia. In the time capsule of the car, I have come to know from him more of our family history. There is safety and confidentiality in the car capsule and we move backwards and forwards in reverie from the past to the present day.
The “She” of his remembrance refers to his only remaining sister, my mother. It has taken my uncle and I a good part of these past 6 years to come to terms with the fact that she is in Montefiore, suffering from Alzheimer’s and Multi Infarct Dementia.
My mother is not going to recover and she is never coming home.
My uncle consoles himself with the refrain, “she is so bad, she is good, she is indifferent -she doesn’t suffer, she is well cared for, she isn’t anxious or distressed.”
This is true. It is a painful truth. My mum is so removed from us. The moment, the one she is living in, is lost as soon as it happens. Only fragments remain of long ago, of memories, and soon (I know) she will no longer remember me. That is painful, especially having grown up as an only Jewish daughter within a framework of historical insistence on the importance of memory.
My mother and uncle are the last of their family.
My Mum Tonia grew up in Poland. She survived WWII in Russia, went back to Poland after the war, then to Germany and then to Australia. The migrant experience was difficult for her. Her marriage was troubled. She took enormous joy in her only surviving brother, her daughter, and her friends. My father died in 1987. As a widow, it was her grandchildren, her friends, her brother and card games that sustained her.
I would like to take you back to the year 1991, when my mother was 77, and when I, my mother and my family started on a journey. It began with the awareness in my mind that something was not right with my mum.
Forgetfulness, disorientation, the in ability to hold on to two thoughts at once, and less care with her appearance were the first signs. But what was wrong with her? I thought she was behaving like that on purpose.
Then the diagnosis was made — Alzheimer’s and Multi Infarct Dementia. What did this mean?
“Tiny silent strokes had been occurring in her brain, mowing down connections. These strokes were not the kind that paralyzed. They were little craters occurring in her brain, real craters in grey matter — “where memory was.”
The kindly Professor pronounced the diagnosis with words of advice — “It would be a good idea to secure Power of Attorney, as you don’t know what the future holds.” That part was right, but as for helpful hints or some “how to manage” points, none were forthcoming. We, Mum and I, would return periodically to the kindly Professor with – “Yes, some deterioration, not huge, we’ll keep her at home for as long as possible…” But from me, there still was the question, “What did that mean?” My question to him was in part the same – “The old pathologies or patterns between us are worse but I cannot tease out what are old psychological games and what is the illness.” His answer was always the same — “It is the illness,” and still from me “What does this mean?”
He was attributing the behavior to the disease and I, with my psychotherapy training, was coming from a different angle. I found it so hard to work out what it meant. What was going on? The old games between us got worse and new ones were developing. Then getting lost in Redfern happened and then the losing of the front door key, locking herself in the bathroom, not arriving anywhere where she was expected, wandering on Bondi Road and across Bondi Road and eating junk food at the bus stop. But I still treated each event in an isolated form, in denial, and refusing to see the pattern that was emerging. We somehow survived this process. I put more help in place in the mornings, with great resistance from my Mum. She didn’t need this. She didn’t want this. It was quite okay to feed the birds in one’s night attire in the middle of the street, to get locked out, and to eat the week’s pills in one sitting.
Then the kindly Professor visited her at home – the flat looked intact on the surface. He reorganized the pills so they wouldn’t be eaten in one go — they were moved and put in a daily pill box — but still they did get eaten in one go. Then the chaos, the disorganization beneath the surface, surfaced, and her personal care deteriorated. I think throughout this time I lived on the edge, so to speak, the edge of always having to catapult into action to rescue her. The food began getting burnt on the stove and rotting in the fridge.
For me it was time to reassess. I tried to reason, be rational — but it’s so hard with an irrational force.
My mother had no need to reassess — all was fine for her. We brought her to The Centre (a day center for the aged) three days a week. She kept missing the bus or went missing totally.
And where was my family, my children in all of this? Living with their Mum who was always on the edge. I couldn’t comprehend, until my mother got into the Sir Moses Montefiore Jewish Home, that her illness had overtaken both of us, and each time I saw her it was her and another – it was her and whatever aspect the disease was affecting that day. I can now best describe this as stable instability – stable in that I knew something wrong was going on, unstable in that it was always unpredictable.
At Montefiore, The Aged Care Assessment Team had assessed her, indicating how difficult it would be to move her to a Home, saying that with dementia comes enormous difficulty in advocating any changes.
I had begun to realize I could no longer live in denial. Denial can be a great comfort, you know. I had to answer some fundamental questions:
- Could I devote the second half of my life to caring for the person whose values I had rejected in my youth. Was I being selfish?
- How was it possible to transcend our conflicts, make the supreme sacrifice and look after my own mother – she who had been robbed of her mother? She who had sacrificed for me – would I not sacrifice in return?
- The rules include
making your mother a grandmother and
accompanying her through her old age. A son’s a son till he takes a wife -isn’t a daughter a daughter all her life?
• I had heard about the virtues of people who gave up their careers to look after aging parents. Could I?
Montefiore was a great place for those who needed it, my Mum thought, but she felt that she certainly did not. It was an enormously difficult process to get her there – her resistance was profound. Tonia didn’t adapt well.
I would go every second day
to see her and be symbiotically caught in the web of her distress and both of us would drown in our
individual distress.
I began to acquaint myself with the staff and social worker there in an attempt to allay all our distress. There was new distress that came from her in the form of abusive phone calls, claiming that I, her only daughter, was finishing off what Hitler hadn’t, or that I was putting her in her coffin alive, or that she would take her life, as it had no meaning for me.
How to deal with this?
Thank goodness for Monday morning therapy for myself with an excellent practitioner.
My children were beside themselves – who was calling, not their beloved Nanny, and, yes, who was she? An answering machine was put in at home to screen the calls. Was I doing this to my mother? What did I feel? Guilt and symbiosis, guilt and distance, all conflicting feelings. The heightened anxiety I lived with at this time defies description. Although I felt that I had done the best I could for her by putting her in a safe environment, it didn’t add up and it didn’t feel safe.
Then the relatives’ calls began. “How could I do this to their Tonia, putting her in a home?” Couldn’t I just get a caregiver (home attendant)? I would have to explain to them all that caregivers came with many problems, including who would be appropriate, would she accept him/her, and if she would be able to handle it when a caregiver left.
My Mum was the first of these relatives, many of whom were Holocaust survivors themselves, to be widowed and then diagnosed with dementia. None of them lived through this with her on a daily basis. I appealed to her brother for help to support me.
At some point, I lost the purpose of the process and I felt myself sinking, taken over by their words. Who was I to repeat a Holocaust on her? I struggled to make sense of relatives’ responses, of my mother’s suicidal response as my family and I attended therapy. Family apologies came later — it was all so new to them and it raised the anxious question for each and every one of them, “Am I next, and, if not, who will be?”
You see, they who had been through the war and lost all had not seen or had to deal with aging parents. We, the second generation, see what is possibly ahead and can put some thought and words to our worry and vision, while Holocaust survivors were rendered speechless in the face of what was happening to them. Some relatives could visit my Mum, and some could not face the unbearable – being confined and helpless. And after some time passed, hardly anyone visited her. It took me some time to accept this, that for some family and friends, visiting and the meaning of who they visited was filled with so much pain and loss that it was difficult to revisit.
One must accept this – we all have limits.
The most devastating upheaval for me was to acknowledge that my Mum needed to be moved from the Hostel section of the home to Special Care. Special Care is a dementia-specific unit, designed for safety of residents and also for different levels of the illness.
I visited Special Care and all I saw on the first visit were the iron railings of the enclosing fence. “No,” my internal world said, “not again for her.” I even sent an anguished letter to the Head Nurse requesting that she “give her another chance.” How naive I was then to think this. There was already no chance. In hindsight, I think my letter was my way of asking them to give me a chance to have some time to process this new step.
I went over in my mind one more time why she was at Montefiore and why she was now in Special Care. The part I could not see at the time was the benefit of what the physical enclosure provided for my Mum. Later, I came to see that this enclosure provided a familiar, safe space and that, in the familiarity and safety, Mum’s distress and anxiety could be lessened. I had to view this enclosure with different eyes — eyes that saw not from a sense of loss, but saw a view from a wider angle of care, stability, security and safety. It was hard for me to make the decision to move her. Through this decision, I came to realize that I was a child of Holocaust survivors and the full impact of this had not struck me before. Special Care and the palings surrounding it brought feelings of confinement, loss, devastation, and aloneness up for me. How was I to impose this on my own mother?
I had to sort out my emotional baggage from her real needs – not the needs she was voicing of; “I want to go home – don’t do this to me!” They were impossible to fulfil. I had to realize her need that was beyond her expressed desire – a need that I become the parent and finally overturn the natural order of things and switch our roles.
It is at this point, the point of becoming a parent to your parent, that one’s own family role needs to be re-worked, sometimes causing an overturning of prior positions in many other family relationships.
……….And so to Special Care.
The day she was transferred was horrendous for my mother’s brother, who, by then, was 98. He broke down in tears, and I, through my own tears, moved her things.
I remember that she
then had a cup of coffee with the Social
Worker.
I believe that, for my mother, there were many moments of anxiety and distress and that they were forgotten. And, in the forgetting, other life issues got forgotten – some pain centers evaporated and protected her from the pain of other past losses and present losses, including some daily functioning abilities.
So, whose pain, whose awareness was at issue here? I realized that, at yet another level, she was removed from me and engulfed by her illness. In a bizarre way, the illness provides a protection for the sufferer.
At the same time, for those who have minds and can think about what is happening, such as the children, relatives, and caregivers, they’re the ones who are feeling the pain and guilt.
There’s a joke about Jewish Alzheimer’s: What is the definition of Jewish Alzheimer’s? It is that the memory goes, but the guilt remains. It is so for me and, I imagine, for many others.
I also think about having less freedom living in a Home. If the food is not great at the Home, we, the relatives, know we can leave and get a good meal and a good coffee elsewhere, but the residents cannot. For me, there is the constant reminder of my freedom balanced by my responsibility to my Mum in meeting her present needs.
Actually, the caregiver role doesn’t vanish with admission of the parent into a home. Instead, tasks change and one is still required to make thoughtful decisions for one’s parent.
Later, I noticed feeling less guilt and more reality/present day feelings when my Mum was moved to a lower level Dementia Unit.
It is 1997 — six years post-diagnosis.
My Mum is still there and I miss her. I miss her even when I sit opposite her. I miss her, because she is missing. I even miss her barbs, like “you need a haircut.” Then, out of the blue, will come a statement so incisive that my breath is taken away and she will say, “Please don’t forget that I exist.”
And then her mind is gone. There is no mark except in my memory that she has said these words and I have heard them.
When her grandson sits next to her and she does not know it is him, I feel more pain. And since her recent stroke, who knows what is next? We wait, both taken over by the course of her illness.
I visit her and leave my mark by my presence in the Special Care Unit with the other residents and staff. For me it is important to form relationships with the staff. I participate a little in the Home activities that mark her time there and say, even though she can no longer think for herself, she is thought of and that the others in the Dementia Unit are also thought of.
I believe one can see those who are still thought of. It seems to me that they remain stable for longer. Can an internal gold star of attendance be acquired by those who visit regularly?
I visit a person called my mother. I have glimpses of my mother, but she is essentially lost to me. Now she knows me less well and is less pleased to see me.
How do we cope with the successive losses? I turned to therapy, family, and friends. Having one’s children say, “You are doing well Mum” helps. Hopefully, working with the Home staff and forming a real network with other families also helps. The staff must be involved and it is very important to see them as caring and not judging. It is important to be able to say to them, “I need time to think of this decision,” or, “I need help with that” when deciding care needs. It is important to participate in caring for one’s parent or relative. To maintain a role in this caring, one needs enough time to process the pain.
One also needs to cope with the private becoming public. Relationships that were once personal and intimate, mother and daughter, father and son, spouse to spouse become viewed and open, and, perhaps, even judged and commented upon. This involves handing over this most intimate relationship to other’s care. One must let go of having your parent dependent upon you for their survival and their daily care.
The existence of the Home and its staff puts distance into the relationship with your parent or relative. When one is not involved in daily care issues, or potential battles over care issues, there is a new chance to repair difficult relationships.
As Lily Brett writes in her poem:
A Daughter
I wasn’t much of a daughter to my mother
I improved late
and she died early
I would have liked
to have been a better daughter.
I became a better daughter. I learned “to fight for her dignity, as if it were my own.”
It is now 2001 — 10 years post diagnosis. My mother has just been moved to nursing home care. This is her last move within the Home. My pain at this move is again piercing. I have to work very hard psychologically at keeping my emotion and logic together, so as to not be overwhelmed by my pain at this next level of loss.
Logically, I know this move is in her best interests, but, again, it feels as if I have betrayed her and her heroic Holocaust survival by not being able to save her from more decline. I visit her more often in her new room. She does not know she has a new room.
The staff love her and in this room she is so mellow that it is hard to recall all of her other aspects that once constituted her. Perhaps I will never have a full idea of who she was. Her “Self as my mother” is indelibly imprinted on my unconscious and conscious self. Prior to her decline, I heard glimpses, told in anecdotes, that she was:
- the most beautiful girl in the town
- the most wonderful sister
- the baby of her family
- the political activist who was thrown in jail for leftist activities
- the resilient migrant who made a better life for her daughter.
From this place in my life, I place enormous value on her survival, if only in symbolic form. Having no daughter to follow me, I have a horrible sense of an ending of this female, family line.
Contemplating her loss makes me feel like an orphan, but of course I’m not. The feeling of being an orphan comes with an experience of her leaving me and me leaving her and leaving our family ties with Europe and being centered here in Australia. Contemplating her loss means contemplating letting go of some identity of myself as a daughter. I can’t finish more of her story and I cannot resolve anything more with her. I hold tighter to our family memories. Memory can be like a wandering Jew. It wanders inside of us in different places and moments.
I feel that without these memories, chaos may erupt within me. Memories order my existence and I go over and over them in an attempt to hold onto her. How to give my memories a use? “Memories die unless we give them a use,” writes Anne Michael in her novel Fugitive Pieces. After processing and reflecting and much time, memories and history inform my work as a living memorial to my parents’.
This is my account of my mother’s journey and my journey and her dementia.
The journey is long, hard and individual. It requires much thought and understanding of our history and our responses. How to survive this Long Goodbye? How do we survive the successive losses?
I have no standard answer, nor any plan. Verbalizing the losses, pain, hopes, fears and the unbearable feelings are part of surviving. The umbrella of a good Home, a reliable, empathic therapeutic practitioner are part of that survival. The importance of time for oneself to think, reflect and act are part of that survival. One must survive the Long Goodbye and be able to say:
I did what I could.
I am not looking back with regret or guilt.
I am surviving this process.
My strategy for caring for myself (although I did not consciously know this at the time) was to get involved constructively with the Home. In hindsight, I think I had to construct something in order to be able to tolerate Mum’s deterioration that I watched on a weekly basis in the Dementia Unit. It is not only one’s own relative one watches, but all the others in the unit as well. I observed the staff-resident interactions closely there. Here, staff were confronted by Holocaust survivors and their children, the second generation who often present with symptoms resembling their parents. I am speaking of our symptoms of trauma:
- It shatters our assumptions about the world being
benevolent and meaningful.
- It shatters that the Self is valued and worthy.
- It stops the flow of words for feelings, producing
alexithymia.
- And it freezes grief, because it is too overwhelming.
In 1913, Freud wrote in Totem and Taboo, “No generation is able to conceal any of its more important mental processes from its successor.”
As my mother lost more of her mind, I began to use more of mine. I reflected on her traumatic memories, her sundowning and attempts to escape. I wondered how this impacted on the staff and what tools they had to cope with this.
Entering an aged care facility brings with it the potential for Repetition of Trauma for a survivor. It is to be their last home, again, and it is the interruption of family history, again, by institutionalization. At the point of entry, survivors are confronted with these issues:
- There can be difficulty with the institutional setting.
- The authority with the home must be benevolent and
not repeat the camps. - There must be attention to the survivor’s suffering.
- There must be attention to complaints and their
function. - There must be attention to silence and its meaning.
- There must be attention to somatic symptoms and their
meaning and how to manage their meaning. - Residents identity within the home must be one of
being loved and accepted.
And there must be attention to what is required of staff: their voice, their gaze when listening to the survivor speak and how they cope when listening to the unbearable.
How can diversional therapists be facilitated to design their work for traumatized residents. And how to train all staff to listen well, be empathetic, helpful and reliable?
In order to provide, as D.W. Winnicott (1960) writes, a “holding environment,” a “good enough” mother is needed to manage “affect storms” (Krystal 1978) of survivors who have lived a “death in life” (J. Lifton).
As you can see, happiness cannot be an aim, but minimizing difficult emotional responses, like anxiety and depression, can limit the repetition of suffering.
In order for all to “Survive” that is a “Long Goodbye.”