Dementia and My Mom

This is the worst thing I have ever encountered...

We have to learn how to have more compassion for our loved ones that are dealing with dementia and Alzheimer's.

It's not an easy task. But their behavior is not their fault.

Living with and caring for somebody with advanced stage dementia can play with your mind.

"It's not their fault"

Behaviors such as talking non-stop or becoming obsessed with anything like drinking water constantly, brushing teeth 7 or 8 times a day, continuously telling you to hurry up, after time can break a person. You can get to the point where you think they're doing this on purpose. But as hard as it is we have to remember that they can't help it and it's not their fault. A lot of times some of these actions are a cry for help or a cry for attention. It must be very lonely and disturbing having to go through an illness like Dementia or Alzheimer's.

In my mom's case her acts of obsessiveness are to combat boredom. On top of being advanced stage dementia she is also completely blind. There are very few forms of entertainment or mental stimulation for her.

Caring for someone with advanced dementia can at times feel like you're being assaulted continuously 24/7. This is not an over statement. There are times, when even the kindest person will become angry, rude, mean, scared, suspicious, and paranoid. This behavior can go on for 6, 7, 8 hours. After several hours of being belittled, called names, blamed for everything bad and punched at, it becomes very hard to want to help them or talk with them. You even start to question whether or not you still love your loved one. Then they say something that triggers your emotions and even though you've been rundown emotionally and physically, you just can't help but to love them no matter what.

Hurry, hurry. Are you ready? The person with middle to advanced stage dementia does not have a sense of time. This is another thing which is very hard for the caregiver to deal with, because they are constantly telling you to hurry up. It's not asking but demanding in a perpetual nagging manner. After 20 minutes of this sort of nagging you find yourself doing things quickly to appease them which in turn causes your blood pressure to rise which wears you down. It's a vicious circle.

The Roller Coaster Ride of Sundowning

"Are you ready?""I want to go home." "Come on let me out." Every single evening we deal with this. No matter what we're doing, whether we are upstairs talking or downstairs eating a meal. It happens every night between around 6 pm. She will ask me, "Are you ready?" I dread it every time I hear her ask this question because I know what's next and I know it will be a very tiring, back breaking, emotion draining 2 to 3 hour (sometimes 4 hour) roller coaster ride of sundowning. This is probably the hardest thing I deal with. First because I am already tired of a full day of lifting and transferring my 105 pound mom as well as running up and down the stairs countless times in an effort to keep her happy. She starts out with that question, "Are you ready?" And I unwillingly ask, "Ready for what?" She will say "To go home." What's next is craziness - enough to drive any guy (or gal) insane. Usually, I will wait about five minutes and then put her on her wheel chair and wheel her up and down the hallway a few times and bring her back to her room and say, "okay, we're home now." I try and say it in a happy tone - like I am really happy to be home. She will respond, "Oh good." and I'll say something like, "It sure feels good to be home," in an effort to emphasize that we're home." After that feeling that she's home my mom will respond with, "Okay, let's go." That's when my heart sinks because I know I have a long night ahead of me. No matter what I say to her. No matter how much I try and convince her, she just does not realize she's home. She usually thinks she's sitting in the driveway in the car and she will repeatedly say, "Come on let me out," or "take me inside." I try and deflect her but that doesn't work because she has only one thing on her mind and that is getting home and going to bed. Okay, so then I will take her a second time down the hall and even mock coming in the through front door and going up the stairs and finally end up in her bedroom. This is where it begins to feel like groundhog day because we will go through the same exact routine almost word for word. "Okay, we're home," trying my best to sound cheerful. It's like we're each reading from a script. But she just isn't convinced and after a second time down the hall I am not so anxious to do it a third time. So, I will ignore her for 15 to 20 minutes and she will begin calling out for my sister to come get her (of course my sister is not in the house - it's just my mom and I in the house). She'll call for my stepdad - her deceased husband. She'll call for my brother (her beloved son) who passed away in January 2021. She'll call for her 94 year old sister who doesn't drive anymore and I will sit there just listening - she just will not give up. But it is when she calls out, "Momma, momma," in her sad little girl voice that breaks me. That's when I will speak up and say, "Okay mom let's go" and she will be so happy and say something like, "Oh thank you, you are such a good person," and she'll rub my hand. So we do it again - 90 minutes into this we're going down the hall again. Eventually she will feel like she's home and she thanks me for helping her and then she goes to sleep. Sometimes she never gets to feeling like she's home and she gets super frustrated - but she is so worn out that she gives up and will say something like, "Okay we'll just sleep here for the night and we'll go home in the morning." Throughout this process I have become bitter and emotionally torn down. But for as much as I am worn out, my mom is ten times more worn out and it shows on her face. She looks beat, her eyes are half closed and her hair is a mess. Though my back and legs are so tired and sore from all this I will bend down one more time to give her a kiss on the cheek and wish her a good night then tell her I love her.

Some of the behaviors are particularly confusing. One afternoon my mom was hungry for lunch. So, I went downstairs to the kitchen and spent 15 minutes making her a scrambled egg and avocado sandwich with some french fries on the side. When I presented the sandwich to her she said, "I'm not hungry. I didn't ask for this." I just about lost it. I wanted to yell at her and tell her, "Yes, you did. Just twenty minutes ago you said you were hungry." But I didn't, I let it slide. For a few seconds though my blood pressure was boiling. I was so upset because I spent the time to make her a nice meal and she just pushes it aside. In a way, I felt like I was being rejected - this is one of those times where the dementia is playing with your own sanity.

"I'm tired, you're just going to have to wait."

Being the 24/7 caregiver for someone with middle to late stage dementia/Alzheimer's consumes almost every minute of your time. Recently I started to become bitter about my time. It seems like the moment I sit down to relax my mom needs something. She has the need to use the toilet often and that's a lot of work on me. One time she had to use the toilet at two in the morning. I was fast asleep and my mom starts saying, "I need to go pee, I need to go pee." She asks me to help her get to the bathroom. I was really tired and I had just taken her to use the toilet about 45 minutes earlier. I told her, "Mom, I'm tired, you're just going to have to wait." She said, "I can't wait." I almost said, "Well go in your pants," but that's where I drew the line. I could not say that to her. I then came to the realization that my 85 year old mom, who is completely blind, is struggling a lot more then I am and I quickly jumped out of bed and helped her to use the toilet.

The Deterioration

The brain is a complex organism. It works on a series chemical reactions and activities which communicate with each other in order to control our moods, behavior, thinking, motor skills, balance, reasoning, reflexes, memory, learning ability, and everything we do.

When these activities and chemical reactions begin to breakdown our mind will little by little lose its ability to function normally. The physical brain is actually shrinking and deteriorating. The person whose brain is in the deterioration process will experience things such as forgetfulness, fear, confusion, anxiety, hallucinations, delusions, anger, fear, obsessiveness, child-like behavior, separation issues, pain that isn't there, taste and smell changes, dizzy spells, unusual blood pressure activity, spasms, and so forth.

Dementia and/or Alzheimer's is the breaking down of the brain. It's not something that can be fixed It's not something that can be controlled simply by someone being nice to you (although being nice doesn't hurt). Medications do help temporarily, especially in the beginning stages. But, as the illness progresses even medications become less effective. That's when the doctor's need to assess the situation and figure out the patients needs. Usually calming medications such as Ativan or Valium are prescribed. Antipsychotics such as Zyprexa (Olanzapine) are used to treat the delusions as well as the anxiety.

Too Many Medications...

There are a lot of medications - for the memory, appetite stimulation, constipation, insomnia, pain, depression, blood pressure, infections, anxiety, antipsychotics for mood and behavior control, and so forth. It goes on and on and I hate it. I hate pumping my mom full of pharmaceuticals. I've tried natural remedies for constipation, insomnia, and anxiety but none of them work.

With everything I do, I feel like I am constantly chasing after something that I will never catch up to.

But there's another side to all of this. It is in caring for my mom I have come to understand the true meaning of love. An unpaid caregiver unconditionally gives their time, their strength, and emotions to another person that is direly in need of help. So many times you just want to give up and walk away. But you don't because you love that person and even though you know they won't get better you just can't give up on them.