I began to realize that it was probably a good thing to allow myself to grieve when I was feeling the grief rather than hiding it from myself.
A View From Within, Thaddeus Raushi, p 73
I would so much like to be able to do the same, just as I’ve always done in my work or community service in the past, yet I cannot even begin to keep up with just thinking about half of what they do. For me it is a loss to feel this, to know that I am not able to handle projects that carry with them responsibility, the types of responsibility I have had in the past. I was not ready in my life to give up these types of activities. I guess I am still not entirely ready to let them go.
A View From Within, Thaddeus Raushi, p 76
She imagined her Alzheimer's like this ocean at Lighthouse Beach--unstoppable, ferocious, destructive.
Still Alice, Lisa Genova, p. 152
No one asks for my opinion or advice anymore. I miss that. I used to be curious and independent and confident. I miss being sure of things. There's no peace in being unsure of everything all the time. I miss doing everything easily. I miss being a part of what's happening. I miss my life and my family. I loved my life and family.
Still Alice, Lisa Genova, p. 185
My frustration and anger also concealed the grief that lay at deeper levels. But there was hardly room for grief.
Ten Thousand Joys & Ten Thousand Sorrows, Olivia Ames Hoblitzelle, p.82
But I crave the simple touch—an earnest smile, a hug, a touch of the hand—far more than a medical prescription or a clinical trial. A simple touch increases body awareness and alterness for those with Alzheimer’s, and reduces feelings of confusion and anxiety.
On Pluto: Inside the Mind of Alzheimer's, Greg O'Brien and Lisa Genova
When there's no cure to an illness or condition, the only window for hope is to become more comfortable with ambiguity and a less than perfect relationship.
Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief, Pauline Boss
This is such a lonely disease. I am surrounded by people, but so lonely. The loneliness comes from being with someone who is no longer able to reach back to me. Loneliness is a different emotion than solitude. I have always enjoyed moments of solitude in life … but the loneliness is deafening. There is such an “empty space” in my life now. Sometimes I look at John while he is sleeping, trying to remember what our life was like.
Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief, Pauline Boss
I realized the time had come to say “good-bye” to the man who was, and say “hello” to the man who now is. That became a turning point. I let the tears of grief flow freely and let myself really feel the loss of my best friend, confidant, and biggest cheerleader in life.
Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief, Pauline Boss
Researchers tell us that the main cause of distress for caregivers like Jenny is neither the burden of caregiving nor the severity of illness, but rather the stress caused by not being able to resolve the problem—not being able to ease their loved one's suffering, not having control over their own lives anymore, not knowing what roles to play, not knowing when it will end, and not knowing whether they are doing a good job, considering that there's often no positive feedback from the patient, extended family, or larger community. The caregiver is alone.
Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief, Pauline Boss
In the case of dementia, however, the type of loss is the problem, not the mental and emotional state of the caregiver. Dementia creates a loss that is ongoing; thus your grief is also ongoing. Your grieving may not be over for years, even decades. With ambiguous loss, this is normal. Ambiguous loss—in this case, dementia—causes complicated loss.
Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief, Pauline Boss