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.
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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.
Suddenly Mad 
Oh Minna, i feel for your reading this post and so sorry to hear what you are going through-sounds like you have had an awful week. I am so sorry to hear about your family conflicts and adapting to a disease like Dementia is very very tough-it feels like people’s lifes are turned upside down. As a result of my Grandads Alzhiermers, my Grandma’s life has been turned upside down as she is my Grandad’s primary caregiver and my Grandad’s life has been turned upside down too. He used to be a fantastic runner and a fantastic bridge player, and enjoyed walking but now(obviously)he can’t do those things. My Grandad has said a few hurtful things to me and my Grandad-he once hit me and called me the C….word, and called me a nuisance and a b….bastard. Remember Minna, it is because of the disease and because your brain can’t function as well as it used to, and don’t feel bad about it, it’s part of the disease. It is very frustrating for the carer to being able to have all the freedom in the world to do whatever they like to having to accompany someone else. My Grandad was very independent like yourself before he got this awful disease-dependency can be a pain at times for the caregiver-my Grandma finds it very hard being dependent-she is ultra independent so she has had to adapt which has been a struggle for her. Relationships do change as a result of this horrible disease-my Grandad yells at my Grandma very frequently. Sadly, you can only talk about topics they know about-my Grandma finds that very difficult. There is no rhyme or reason why it happens to…and…just unlucky sadly. My Grandad finds it hard to control his anger too sometimes. I’m so glad you have friends that accept you-you deserve that Minna. I’m sure your family will forgive you for all the harm you have done and hopefully they are empathetic and understand that it’s an effect of the disease. You could do some meditation and mindfulness to remain calm perhaps. I like those tips you have lifted above-they are all so true. It is very hard to accept that the person/family member has Alzhiermers/Dementia and filterness is very difficult. Thankfully, my Grandad hasn’t lost his filterness as his friends who are still alive support has been wonderful to him and pop round to see him and have morning tea with him so very appreciative of that. I hope and pray your kids are proud of you and it is hard in every aspect the disease-and very hard for family to accept-i’m certain your kids love you very much and are proud of you and remember the wonderful qualities about you and all the wonderful memories in the past. That is so mean-i would spend time with my regardless of whether he takes medication or not-he doesn’t take any and we are all fine about that. I feel for you and yes, it is scary what is ahead-you never know what is around the corner and what tommorow holds especially with Alzhiermers disease. You being in a nursing home would be horrible especially at your age-i hope and pray you are able to stay and home for as long as you can. The future is really hard to predict-life is unpredictable. Take care Minna, thinking of you and sending love, prayers, and blessing to you from New Zealand😘
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You are always so kind Sam. Lovely young man you are. So full of compassion. A rarity in today’s world.
How old are you? How old is your grandad? The anger I feel is that I am too young to have this horrible disease. In 2.8 years since what I recognize to be the insidious onset, I have progressed rapidly. Sure I can still write but I struggle with other basic tasks. It’s getting hard to get out the door, getting harder to walk and speak. Sir Terry Pratchett, a great well known British author diagnosed at age 59, lived 8 years with it. He showed no major decline until the last 2. Pat Summit the great women’s basketball coach, lived 5 years. Also the last 2 years were the spiral down. Later onset is different I believe. Older (age 75, 80+, go more gently it seems). Longer lives have greater resiliency. Time is the enemy in younger onset as it tends to go fast. The man who processed my social security documents said as I was leaving his office, “the brightest bulbs go out first”. That’s younger onset. Bless you for caring about this woman you’ve never met in person. If you had been my student I would have helped you develop a love of art and art history. Go to museums Sam. Study the Maori who are likely a part of your genetic heritage as the people’s intermixed. There is so much for you to learn and explore. Find images of art by the greats and show them to your grandad. Learn to love art and music and films and theater. Know your heritage and lineage. These will enrich your life no matter what you do professionally when you grow up. Sending love and blessings to you.
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Meant “with my Grandad regardless of medication” not “with”. Silly me!
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Hi Minna, thank you so much for your lovely and very thoughtful reply and so lovely to hear from you😊That is so true-there is not enough compassion in this world-i hate how people but only themselves first especially when one family member is experiencing hardship(E.g My Grandma with Grandads illness)and do nothing to help especially when they have all the time on there hands such as my Aunty who does absolutely nothing and is so fruitless and so selfish. I am 15 years old and my Grandad is 87 years old-he will be 88 in October if he is still around then. You do tend to forget tasks as the disease advances but there is still some things you know. Like you, my Grandads walking and speech has detoriated-sometimes i don’t understand what he is saying-perhaps my hearing or he speaking too fast or brain not functioning properly-not sure what combo that is!My Grandad is declining rapidly and harder for him to get out of the door to-he gets tired after days out now-just wants to relax and rightly so. My Grandad has forgotten to do almost all housework chores sadly now but when he was first “officially” diagnosed in August 2015(shortly after you were)he could still make a cup of tea correctly but very slowly(as you would expect)but sadly can’t make it now and makes mistakes when he does-puts milk and water in it now sadly. Wow-amazing history there-thanks for sharing Minna. The first 3 years of Grandads Dementia(before his official diagnosis)he declined very very slowly, the 4th year it sped up a notch, but when he reached 84 he has declined rapidly ever since and every year, every month, every week he just gets worse and worse and isn’t partaking in conversations much sadly now. What you have said here is so true. I wish i was your student and i have had bad experiences of art but i know i would LOVE learning art with you!My art teacher were horrible-couldn’t stand them at all and i am very dim at drawing and yelled at me if i made mistakes-very painful! I would love to go to the museum and yes i will show my Grandad and history is awesome and very fascinating-museums are very fascinating so will go one day. Blessings, love and positive vibes back to you😘🤗PS i LOVE following you and found you on Kate Swaffers blog-she did a post about meeting you online-Kate is so interesting too!
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As a Care Partner for my dear wife, I think I have accepted that her filters have gone. I understand that she no longer has the capacity to think before she speaks. I hope that your friends and family accept that dementia often leads to personality change and you are struggling to retain your true personality.
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When I read this I felt like you were describing me. It’s scary.
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It is a scary journey. Not for the faint of heart. My husband is not designed to be a caregiver, yet he’s doing it. It is very hard.
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Thanks for acknowledging your understanding about filters. I am aware in hindsight when I’ve lost my filter, but that’s too late, and damage is already done. As for true personality, I am struggling to retain it, but do a better job of that in my writing than in person, I think. The regression that comes with this disease is more evident in person. I love that you refer to yours as your dear wife. I don’t think my husband would be so generous in regarding me in that way. That makes it particularly hard for me. Alzheimer’s people just want to be loved.
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I’ve just finished an online course on FutureLearn. Ran across this article while doing research for it and thought of you. I was astonished at what this doctor said about what antipsychotics did to the brain of people. It’s alarming.
How schizophrenia affects the brain | Iowa Now
https://now.uiowa.edu/2013/09/how-schizophrenia-affects-brain
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When I read this I felt like you were describing me. It’s scary.
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