Heartbreak of Dementia

Posted on Monday, March 16th, 2015 at 12:07 pm by Diamond Jim

This is from an email forwarded from a friend of a friend who placed this on Facebook so the members of their own family might finally listen. Only those who have been involved with Alzheimer's, Parkinson's, Lewy Body, etc., are able to come close to empathysizing with those caregivers for these victims of dementia.   The caregivers suffer as much, if not more, than the patients. The email is heartbreaking.

"I am posting the following on facebook. I can’t seem to discuss this with my kids but they will read Facebook and I am hoping it will help them understand where we are."


"Every day is a new learning experience with Alzheimer’s disease. When one thinks they have reached a comfortable norm they awake to a new norm. In our present circumstance we are not sleeping through the night. I wake up about 2:30 and Janell is up with the light on, making up the bed with me still in it. No amount of persuasion convinces her that it is still not time to get up. Since she is recovering nicely from her broken shoulder, I decided one night to simply let her meander around a bit and I stayed in bed with the covering neatly arranged around me. Big mistake. I have security locks on all of doors, even into Paul and the girl’s quarters, so I knew that she would be reasonably safe in the house, but she left nothing she could get to untouched. She evidently used this as a license to change places with everything she could move, which included placing dishes and bread in the washing machine. As bad as that may sound, I think she thoroughly enjoyed the freedom of someone not following her around and monitoring her every move. It has caused me to rethink what I let her do. Trying to mentally change places with her I cannot imagine what her world must be like.

We are at a stage where Janell is simply miserable. She is aware enough to know she has a problem, yet unaware of the significance of that problem and how to deal with it. She keeps commenting to me over and over, “I don’t know what to do.” I understand that this is a real emotion she is experiencing. She is still cognizant enough to want to carry her load, but without rational thought to perform that task, thus she in simply in a bewildered state of mind, and very confused. Her eyes have lost their luster. which was so very much a part of her appearance and personality. She is tremendously dependent on me and l am often awakened at night, since she has waked up and reached and grabbed me to make sure that I am still there.

I am aware that our current state is only temporary. There is nothing stable or lasting with this disease. Its progress is somewhat slow, but it is insidious and unrelenting. Perhaps the most difficult thing about the disease for family and caregivers is that a person’s actions and the things they often do defy reason and logic. From an early age, us human animals are taught reasonable and logical behavior. One learns somewhat quickly that persons in the grips of Alzheimer’s are not capable of thinking reasonably or logically, yet our ingrained attitude still seems to force us to expect proper behavior. Isabella our youngest seems to have the most difficulty with this and thinks granddad should make grand mom behave. Some things even granddad can’t fix.

Realizing that we expect rational behavior, but intellectually knowing this person is not capable of normal behavior, leaves one guilt ridden when we lose patience. Often in her frustration, Janell is confrontational with the kids and caregivers as well, and Isa seems to have the most difficulty with this.

The other great fear for caregivers is the fear of their loved one doing something that will cause them harm.  The level of watch care and supervision is much like one expects with a two year old. I have caught Janell with Dawn dishwashing detergent in a glass just ready to drink it on occasions. Another time she started to drink waffle syrup. Our most serious problem was caused by her fall on the road after slipping out of the house. The same level of supervision is required that is required for a toddler plus more.

Janell no longer reads, she will not watch TV or movies. I have found nothing that will hold her interest. Up until recently she liked to fold clothes out of the dryer. Now I am lucky if she gets two towels folded from a dryer load. She is no longer able to carry on a conversation, and will often simply get up and walk out of the room when people come to visit. That is most distressing for me, since she has always been the social person in our family. Few people try to visit with her anymore since it is so difficult.

We tried Sunday School last Sunday, but I am not sure that she knew where we were. She did sit through the class and was not disruptive. I will try Sunday school and church next Sunday, although I do not think we will get through the music. She enjoyed the old hymn that we sang in Sunday School and she sang along and seemed to remember every word. I do not think the contemporary music with all the instruments will be a worship experience for her. I can turn off my hearing aide, but she cannot.

Here at home she is constantly moving every waking hour. She may sit down to eat and change chairs three or four times in five minutes. In the five minutes or so that I have been writing, she has switched chairs seven times. My heart breaks for her, but I can find nothing to hold her interest. 

I am hoping to get Janell outside if the weather clears soon and we have some warm days. I am hoping that some good exercise will help, however I have walked here around in Lowes and Walmart and that doesn’t seem to help. One would think that she would tire and simply sit down and relax. Not so; she seems to be driven. She cries a lot, but she cannot verbalize why. I suspect it is simply the confused state that she is in."