A Unique Perspective: From And An Alzheimer’s Patient Who Was An Alzheimer’s Caregiver

My Mom

My Mom was diagnosed with Early Onset Alzheimer’s in her late 50s. (I was just diagnosed at the same age). She died seven years ago, after living with the disease for many years. The changes initially were not readily apparent and just seemed like normal aging. Then one day when she was 64 she called me and asked me some questions about her bills. She seemed very confused and unsure of her financial situation (which was very out of the norm for her). I told her that I would get her mail forwarded to my home so I can get her bills and pay for them and try to figure out what was going on.

Over the next 30 days, I got her mail and I was shocked. She had 32 magazine subscriptions and five cell phones (I had thought she only had one). I drove to her house to discuss this. I asked her why she was getting so many magazines and she said “they just send them to me”. I asked her if she had a cell phone and she said “no”. I told her she was paying for five of them and she said she wasn’t. I then searched her house and found four unopened cell phones in their boxes. She wasn’t sure how they got there.

She was still driving then and was not getting lost and still seemed comfortable driving. Then one day I got a phone call from the police department informing me that she had been pulled over on the freeway for going 30 miles over the speed limit. When the officer confronted her she became belligerent and hit him with her purse. They did not arrest her. They told me I had 10 days to take her to the doctor and have her evaluated. The diagnosis was Early Onset Alzheimers. She refused to give up driving so I had to get a second opinion, and as her medical power attorney and executor I had to take away her driving privileges. This was one of the hardest things I had to do. She hated me for doing this and I hated myself for having to do it, but I couldn’t risk her hurting someone else.

The next several months I saw continued decline in her cognition. We both saw it. It scared her. She was confused, disoriented and most of all frustrated. She lived 45 minutes away and I was not in good health, had a full time job working 70 plus hours a week, had two children and was divorced with no one else to count on to help me care for her. I also was not allowed to drive long distances due to medical concerns. I was in a rock and a hard place. She wanted to move in with my kids and I, but I knew the stress would be too much for my heart condition. Not only did she have Alzheimers, but she also had COPD and was an insulin dependent diabetic. I discussed it with my Mom and we agreed that I would find her a independent living facility near my home. I sold her home and moved her into one of the nicest senior living facilities in Michigan, one mile from my home. She had a beautiful one bedroom apartment, with a kitchen, bathroom, and living room. She could eat in her apartment or go eat in the cafeteria or dining room. The facility also offered ample social activities to entertain her, none of which she took part in.

In upcoming blogs, I will talk about our experience while she was in this facility. It was a long agonizing journey. A journey I do not want to put my husband through. Everyday I watched her become a shell of herself, until the only person she knew was me. She couldn’t take care of herself, could not communicate effectively because she couldn’t remember anything, could not do basic grooming, had anxiety and emotional outbursts, and eventually could not swallow and had wasted away to nothing. This decline was slow at first and it took 12 years before she died. Eight of those years she did not have quality of life. Is this what I have to look forward to? More importantly, is this what my husband has to look forward to? We were dating for a few years towards the end of her life and he saw the situation first hand. He has to be scared to death now thatI also have been diagnosed with this horrendous disease.

My Mom was my best friend, and I feel like I failed her. I couldn’t not stop the decline, and I was in no condition myself to take care of her. I was there every day for her though during her decline and did everything I could for her. It took a significant toll on my emotionally and physically. I’m sure it contributed to the downward turn in my health. It wasn’t her fault. She needed me. I don’t want to do this to my husband. Sometimes life doesn’t seem fair. I am fully aware of what my life will be like in the future, and it looks pretty dismal. So for now I have to live in the moment and enjoy every day that I have, while still planning for my future and preparing my husband for the inevitable. We are praying for a miracle.

The Alzheimer’s Association has some excellent resources that can help caregivers including a home safety checklist. Also, I highly recommend that anyone who is going to be a caregiver should join an Alzheimer’s Support Group meeting. Also, I recently found a great resource. Her name is Teepa Snow and she is an dementia/Alzheimer’s educator and offers resources and videos for all different topics related to these conditions and caregiving topics. I wish I would have known about Teepa and the Alzheimer’s Support Group meetings when I was going through this with my Mom. It would have made it easier for me.

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3 thoughts on “A Unique Perspective: From And An Alzheimer’s Patient Who Was An Alzheimer’s Caregiver

  1. Oh Kelly! I am so sorry such a large portion of your life was so difficult for you! I can’t imagine how difficult it was. You are such a strong woman to deal with all of that and still have a positive attitude! I have a friend and coworker who also took care of her mother with Alzheimer’s and worked full time, and also ran a business with her husband. She reminds me a lot of you! I know prayer helped her through. I will pray for you, not only for you, but for me, because I want to get to know you better, spend more time with you and become great friends! You keep fighting and praying! ❤️ Carol

    Liked by 1 person

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