I’m no angel. I’ve hurt people.
I’ve hurt those closest to me. I’ve hurt my husband who is now also my caregiver. He takes care of me. The role reversal has been extremely hard on him. He has to do more for me than he has ever had to. He’s said some very hurtful things to me which have made me feel horrible. I’ve retaliated. We have had a lot of conflicts about how to live together in peace. He resents how dependent I have become. I WAS VERY INDEPENDENT before this horrible disease. Things have gotten pretty nightmarish between us many times since the onset and progression of my illness, causing excess disability. Then things fortunately return to a calmer place. There is love but it is a different love than that of equal partners, as it was before I got sick. I’m angry that this happened to our relationship and so angry that Alzheimer’s has happened to me. Why me? Why at this age? It’s not his fault though. It’s the fickle finger of fate, and I got unlucky. We both did.
I still have to accept my part in how I react. I have to learn how to control my anger and reactivity. Knowing this and also knowing and seeing that I have lost my filter many times is my job now. How to do this? How to better control my symptoms like irritability which leads to poor impulse control? Geriatric psychiatrists prescribe Risperdol and Seroquel to agitated anxious Alzheimer’s patients. Depakote (Valproic acid which my friend Howard told me made him drool, is another one that’s prescribed). I’ve seen some of the effects of the antipsychotics – tardive dyskenisia, stroke! There’s got to be a better way.
How to remain in a calm state when I am triggered, when I disagree? I’m working on it. I’m relearning tools so I can remain calm and centered and draw on the strengths I still have to be able to be more pleasant to be around. I see that we all suffer. I want to to become more empathic, want to listen and not just react. Even while experiencing changes every day. To find that calm center in the storm requires tools. Yes I am angry and despairing. I’m not experiencing a contented dementia, which some apparently do. However, in order to remain in my home, stay married to my husband, maintain a loving relationship with my kids, have friends that will accept me and want to be around me, whether on Zoom chat or in my community, I need to hold it together and have the tools. Self regulation.
The drawing is an effort to tell those I have hurt (you know who you are) I am truly sorry. I can’t undo the damage, but I can take responsibility for my part in causing harm. You may disagree with me about my choices. There is time to agree to disagree. I will not fully lose my mind by next week or next month (I hope). In the meantime I am seeking the tools to remain centered and calm.
That’s where 12 steps of AA gives me pause and exceeds anything a therapist or psychiatrist can offer.
Step Eight and Nine address making amends:
- Step Eight: Made a list of all persons we had harmed, and became willing to make amends to them all.
- Step Nine: Made direct amends to such people wherever possible, except when to do so would injure them or others.
Making amends is about keeping my side of the street clean. Whether I am justified in getting angry doesn’t matter. It’s how I handle the things that hurt me that is the issue. Becoming agitated, angry, distraught, demanding, overbearing, acting out is never useful and is destructive.
The following are the Steps of AA. I replaced the word alcohol with Emotions and Reactions to others.
- We admitted we were powerless over Emotions and our Reactions to others–that our lives had become unmanageable.
- Came to believe that a Power greater than ourselves could restore us to sanity.
- Made a decision to turn our will and our lives over to the care of God as we understood Him.
- Made a searching and fearless moral inventory of ourselves.
- Admitted to God, to ourselves and to another human being the exact nature of our wrongs.
- Were entirely ready to have God remove all these defects of character
- Humbly asked Him to remove our shortcomings
- Made a list of persons we had harmed, and became willing to make amends to them all.
- Made direct amends to such people wherever possible, except when to do so would injure them or others.
- Continued to take personal inventory and when we were wrong promptly admitted it.
- Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.
- Having had a spiritual awakening as the result of these steps, we tried to carry this message to others and to practice these principles in all our affairs.
The disease of Alzheimer’s is very hard to accept for the person who has it, as well as for family members. There are a host of physical symptoms that impact our daily lives. There are emotional, psychiatric and cognitive issues that warp our existence. When Alzheimer’s and other dementias disrupt memory, language, thinking and reasoning, these are referred to as the cognitive symptoms of the disease. Behavioral and psychiatric symptoms describe a large group of additional symptoms that occur to many in some degree. People may experience personality changes, anxiety, depression, sleep disturbances, agitation, delusions (firmly held belief in things that are not real), or hallucinations (seeing, hearing or feeling things that are not there). These are some of the most challenging and distressing effects of the disease.
Alzheimer’s has made me lose many abilities, but the one that has been most distressing is the loss of my filter. I regret this. I’ve lost friends because if it, and I’ve lost respect.
I’ve hurt my daughter, who I love dearly. I’ve taken offense with her in many issues around this disease – legal, medical, moral and human. I’ve been angry with my son who I’ve always adored. When I was first diagnosed I became tyrannical, when my son refused to acknowledge and accept what was going on.
My original diagnosis was Mild Cognitive Impairment due to Alzheimer’s pathology. Now my husband and adult children are aware of my progression because things are not getting better. My daughter thinks medications will lower my anxiety and lift depression. I have continually made her aware that Ativan and Klonopin may have contributed greatly to my decline http://myalzheimersstory.com/2015/10/28/lets-get-dead-right-about-dementia-and-dangerous-drugs-and-lets-do-it-now-if-not-sooner/
She has told me that she can’t spend time with me unless I take medications. I’m very sad about that.
I’m now advised by an elder care attorney to sign documents that will prohibit me from having my name on the deed to my home. I am to prepare to become Medicaid eligible so that I can be placed in a nursing home when is too overwhelming. The underpinning to my fears are quite real, and I am scared. While I have a family, I am no longer considered a normal mom and wife. The losses are really too much for an individual to handle, and yes, I have lost my filter many times. Is that ok? It’s not.
What I am learning is that composure is critical. I am a human being with rights. Yes. I have a disease that is slowly progressive. I do not want chemical restraints. I would like to be respected and have the abiding love of my family as I face living with this disease. I do not want to be placed in a nursing home. I won’t have that right if I am aggressive or angry.
I can maintain my integrity much better by simply withdrawing when things become overwhelming. Composure. Humility. Time out.
Will I lose my mind completely and become a babbling incontinent Alzheimer’s patient who can’t use my hands to feed myself, or my legs to walk? I am indeed frightened about the future. I’ve been suffering. I don’t want this to be happening. However, while I can, I am making the conscious decision to stay more composed and humble. Because I can.