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I have a good friend. We are close in age. Like my mother, Dotty, his mother is suffering from Alzheimer's disease.
His mother is cared for by his sister. He lives a long way from his mom.
John is getting worried so he calls me and asks, how do you die from Alzheimer's disease? Just asks me, up front, straight out.
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This is a difficult question to answer. Keep in mind I am not a doctor, just a friend.
I have given this issue a lot of thought. It pops up in my mind from time to time. Of course, when it happens I am thinking about Dotty (Dotty went to Heaven on May 25, 2012).
I'll start by saying, I go in a look at Dotty every morning. To be honest, I want to see if she is still breathing. Sometimes I have to get close. Relief. That is how I feel.
I have thought to myself, what if I go in there, how am I going to feel if she is not breathing? First thing I know, I won't panic. For some reason when most people panic, I get calm and focused. I'm not worried about that part. I have a plan.
The real question is, how am I really going to feel? Most likely very sad and very lonely. Caring for Dotty is like being attached to her with an umbilical cord. I bet many of you feel the same way in your situation.
I'll feel sad, lonely, and maybe alone. I'll go on automatic pilot.
The question, after I take care of the details how am I going to feel? Most likely relieved. I don't mind admitting this. How about you? I bet many of you feel like me.
Here is something I am certain about. It won't be long before I am thinking lots of happy thoughts. Sure I'll have to get over the grief, deal with it, and that will take a while (Dotty Went to Heaven Four Weeks Ago).
You might be wondering, what happy thoughts? I know how my brain works, and I know how its wired. Lets skip to the bottom line. We beat Alzheimer's. Dotty and I beat it. This is my belief and no one is ever going to take that away from me. Not ever.
Dotty and I continued to live our life after Alzheimer's set in. We are survivors. Living breathing proof. We both knew for a long time, we would die someday. Tip to those that believe otherwise, we all die. The key is surviving during life.
So I won't be spending much, if any time, thinking about the sinister side of Alzheimer's. I'll be thinking about how Dotty made me laugh. Laugh during my entire life.
Don't worry I'll still be writing about Dotty after she is gone.
I'll tell you some stories that will make you laugh. Some of these stories will be about what Dotty did and said after she was diagnosed with Alzheimer's. I might get a little emotional when I tell you Dotty's favorite words, I'm hungry you know, I'm starving.
Then about that perplexed look on her face when I try to explain, you already had breakfast twice, lunch, a few snacks and its only 2 in the afternoon. Oh the look. She looks perplexed and like she is trying to remember.
This is getting a little harder to write than I thought. I'll take a break.
I'm back. Now to John's question.
So far, I saw first hand a few people that were suffering from dementia stroke out. A series of strokes actually. Stroke is a major cause of death in Alzheimer's patients.
Dotty has headaches all the time. It is the headache on the top of her head I have to watch out for. Doc Chiriboga taught me this. He taught me how to test Dotty. Have her squeeze my hands. Follow my finger. Check the strength in Dotty's legs.
Doc told me, if you are concerned, call 911. Call me after she is admitted to the hospital and I'll get involved. Don't call for an appointment, don't bring her into the office. Call 911. Gotta love Doc C, he looks me right in the eye and says, you'll know what to do. So do it.
I worry abut the dreaded stroke.
I ask Johnny, does your mother start coughing while she is eating? He says I don't know.
I tell him some Alzheimer's patients forget how to eat. Some forget how to swallow. So when they eat they might start choking. More or less, the food goes down the wrong pipe, or gets caught in the air way.
This can lead to pulmonary aspiration. Medically speaking, aspiration is the entry of secretions or foreign material into the trachea and lungs. I'm not a doctor, I read it.
If you haven't given this a lot of thought, I suggest you ask a geriatric specialist, or neurologist about this. You might also start thinking about what you are going to do if your loved one starts choking.
What I am describing here can lead to infection and pneumonia. Pneumonia.
Pneumonia is a major cause of death in Alzheimer's and dementia patients.
Yes, I am worried about this as it pertains to Dotty. I expect this could happen with Dotty. I am mentally and physically prepared. Prepared to the degree possible.
The dreaded bladder infection, UTI. This leads to infection. Infection that can get out of hand. It can also lead to a stay in a hospital. Believe it or not, it can be dangerous to spend time in a hospital these days. You can pick up something like a staph infection.
We seem to have the bladder infections under control here. But keep this in my mind. Dotty has never said, I think I have a bladder infection. In the early years, both the Doctor and the nurses were missing Dotty's urinary tract infections. It wasn't until I started taking Dotty's temperature every day that we stopped the frequent UTIs. I now take a urine sample with us to the doctor and ask them to test it, every time we go.
When Alzheimer's patients get an infection it can effect their behavior. Basically, they become harder to handle, less there, or kind of out of it. Sometimes they start hallucinating, or get somewhat paranoid. Infections do effect memory, and can cause memory loss in dementia patients.
We have lots of material on this website about UTI. Look over on the right side bar for, Urinary Tract Infections, Urinary Incontinence, Poop (8 Articles). Read up. Share the information.
So I tell my buddy Johnny, stroke, aspiration, pneumonia, infections. Gotta be on the look out for all of these. Keep in mind, most dementia patients can't tell you how they are feeling, so you have to be a detective. You have to be on guard every day.
There are more things to worry about that I did not touch on here. Falling and bedsores come to mind. You might also consider this, some dementia patients like to put things in their mouth that shouldn't go in there. You probably have a lot of toxic products in your home. You might want to be sure that these products are not so easily accessible.
The list does go on and on.
My friend John called me back. His mother is coughing when she eats. So is Dotty.
We gotta be on alert.
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 4,000 articles. Bob lives in Delray Beach, FL.To learn more about Alzheimer's and dementia visit the Alzheimer's Reading Room