Miserable

If Alzheimer’s disease progresses naturally, the patient will eventually lose the ability to walk, and the caregivers will need to use a wheelchair to move the patient. Finally, the patient becomes bedridden. If the patient and caregivers are lucky and the caregivers do the best they can, the process may not be so bad.

This is not always the case. Some patients wander around. In some cases, they get lost and never come back. Some have accidents and pass away. Alzheimer’s patients may have other diseases, and some die because of them.

My mother had Alzheimer’s disease. First, she needed a wheelchair, and then she became bedridden. Finally, she stopped breathing and passed away. It took about twenty years. Many people helped us. We were all lucky. I did as much caregiving as I could.

My mother and I commuted to a hospital that specialized in dementia. There were many Alzheimer’s patients in the waiting room who were in different stages of the disease.

While my mother could walk by herself, I saw patients who needed to use wheelchairs. I thought that was miserable. I imagined it took caregivers a huge effort to take care of them.

About ten years later, my mother also needed to use a wheelchair. When I visited the same hospital, I saw Alzheimer’s patients who could walk by themselves, and I thought completely the opposite: “Oh, that patient can walk by themselves. It must take the caregivers a huge effort to keep the patient safe. It must be miserable.”

According to a book, the early stage is the most difficult when taking care of a person with Alzheimer’s disease. Caregiving will gradually become easier as the disease progresses. From a caregiver’s point of view, a bedridden patient is the easiest to deal with.

I remember feeling relieved when my mother lost the ability to walk. It meant I didn’t need to watch her all the time. If we used a wheelchair, I could move at my own pace. It was hard to help her when she was still tottering. I needed to look out for small bumps and steps.

If your loved one has Alzheimer’s disease, it is miserable, but how miserable you are cannot be judged by surface appearances. Those caring for people in the early stages of Alzheimer’s disease experience the hardest life. They and their elderly relatives might look normal. We can’t know who is miserable from their appearance.

 

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Picture by Izumi Kobayashi

Medicine for Alzheimer ‘s disease

　I once cared for two Alzheimer’s disease patients, my mother and my great aunt. I had hard days at that time. Taking care of Alzheimer’s patients at home is difficult -- almost impossible. It hurts to remember those days, even now.

 One day, I saw to a big newspaper advertisement about a medicine. It said the medicine was effective for Alzheimer’s disease. At that time, there was just one Alzheimer’s medicine, Aricept, covered by the Japanese insurance system. My mother and my great aunt were taking Aricept, but the advertisement said this new medicine would be good for the disease.

 It cost 150 dollars per month. If I bought it for my mother and my great aunt, I’d have to pay 300 dollars every month. Expensive! But if that medicine helped our hard situation, it would be priceless.

 Before I decided to buy the medicine, I talked to our doctor about it. He didn’t know about the medicine. He said he was not sure if it was effective or not.

 I was suspicious, and we could not afford the medicine. I gave up on buying it.

 A few years later, I found a small article in the same newspaper. Scientists had discovered that the medicine had no effect on Alzheimer’s disease. It was a fake medicine!

 It was so close. I almost had paid for this fraud! If I had paid 300 dollars every month, it would be 3,600 dollars every year! The caregivers for Alzheimer’s disease patients are vulnerable. They are all struggling. A drowning man will clutch at a straw. The company took advantage of their weakness. I can’t forgive them.

 I also can’t forgive the newspaper company. They put the advertisement in the paper. Many people were fooled by the advertisement. Then, the newspaper company published only a very small article to explain that the medicine did not work. It was too late and too small.

 These days, false advertisement on social media is a hot topic. But even now, there may be false advertisement in the mass media. All media loves sponsors, because everyone loves money.

 Trust nobody!

Picture by Ammatar

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Don’t Lump

 When I visited the USA by myself for the first time, I stayed at a B&B. It was economic and also introduced me to a roommate.

 My first roommate was an older Swedish man. I am not familiar with Sweden, but I remembered that I had learned at university that Sweden and Denmark were good at social welfare. I mentioned that as a compliment, but he was not happy to hear it. He said, “Don’t lump Swede and Denmark.”

 When I lived in Osaka, I visited Sakai, which is located next to Osaka. I am from Nagoya. It is different part of Japan. I mentioned differences between Osaka and Nagoya to a person in Sakai.

 He was not happy to hear that. He said, “Don’t lump Sakai and Osaka.”

 Generally, neighbors are similar. But in most cases, they don’t want to be lumped.

 I have an elder brother. His face and voice are similar to mine. But if someone said we had similar personalities, I would be not happy. I would say, “Don’t lump me and my elder brother.”

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Picture by scb13