I have been working in the Human Services field since 1996, primarily working with people with developmental disabilities.
I've been taking care of my mother who has dementia for about 3 years now. Back in 2011 she started showing signs of dementia, though neither one of us knew. That's how this condition sneaks up on you.
To say dealing with dementia is difficult is the understatement of the century. Any kind of help the sufferer and the care-provider can get in dealing with dementia is always needed and welcome.
I suppose that's why I'm writing this article.
Taking Care of a Parent with Dementia: My Personal Story
It started with little things, sometimes terrifying big things. It seemed like she was making up stories about the neighbors. When she was driving, she'd drive up on a curb, misjudge distance.
Well, I quickly learned to take over certain duties.
Things were misplaced, other things forgotten. She had some difficulty using her cell phone. She started asking me questions every 10 minutes, questions I'd already answered many times.
Then the hallucinations started. She thought homeless children where living underneath the apartment complex, thought someone was going to detonate a bomb in our apartment and was certain someone was out to kill her.
In the middle of the night, I'd be awakened by police knocking on the door. I'd find myself explaining to the officer why my mother had called them claiming someone was trying to murder her.
I guess you can imagine, it was hard for me to make it to work in the morning. Especially since when I got to work, the boss tells me my mother had called wondering if I was okay after being attacked on the street. He wondered if I was okay. I was. Kind of.
Attempting to make this long story short, eventually I had to take over my mother's financial affairs and other things like prescriptions, cooking, and so on. I've taken over everything she can no longer do, which is almost everything she used to do. In addition, I answer the same question she asks me every 5 minutes. I listen to her talk about her hallucinations and assure her she's safe at home with me and not at some scary place waiting for a ride home. I keep track of her appointments and help her use her cell phone, even when she wants to call my sister every 10 minutes. She sometimes thinks my sister is her sister.
You get the idea.
All I'm going to say is it's more than a full-time job I have, taking care of my mother.
Can you say burn out? Well, I can say it and definitely feel it.
What Causes Dementia?
Dementia itself is not a disease. Dementia is a group of symptoms of a disease. Alzheimer's is a disease.
Dementia is caused by another problem. It can be caused by a stroke, by Parkinson's disease or Huntington's disease, or excessive fluid in the brain. It can be caused by substance abuse. It can be caused by a head injury. It can even be caused by a deficiency in Vitamin B12. It can even be caused by depression. Many diseases that affect your nervous system can cause dementia.
When these conditions affect parts of the brain involved in learning, memory, decision-making and language, then you have dementia.
Most cases of dementia cannot be cured. However, there are forms of dementia that can be treated. The kinds of dementia caused by substance abuse, hormone imbalance or vitamin deficiency or depression can be treated successfully.
Signs of Dementia
There are specific recognizable signs that someone has dementia. These include:
- Memory loss
- Trouble recalling recent events or recognizing people and places
- Problems doing basic tasks like using a cell phone or scheduling appointments
- Judgment impairment
- Uncontrollable moods, swings to depression
- Difficulty attending to personal care
Stages of Dementia
Here I have delineated the 7 commonly accepted stages of dementia. My own experience has diverged slightly from the order of the list and I've made note of it in the list.
- No sign of dementia. This is important to note, because it helps you differentiate when dementia starts setting in.
- Very Mild Cognitive Decline. She misplaces her keys once in a while, forgets a person's name. Eventually, though, it starts to happen regularly.
- Mild Cognitive Decline. Now it's happening regularly and more intensely. There is more memory loss more often, she repeats things she already said and asked, she can't concentrate or stay organized, tasks are more difficult and she can't do basic problem solving. In all likelihood she can no longer drive a car. As I stated, my mother had this problem and it happened early on.
- Moderate Cognitive Decline. This could involve social withdrawal. I'd like to state here, my mother has not withdrawn socially, in fact she wants more attention and interaction than ever. This stage is marked by moodiness, which falls in line with my mother's behavior; she goes back and forth between excited to depressed, often. The person could be unresponsive, intellectual capacity could be diminished, they could have much more difficulty with daily tasks and they could be in denial about the symptoms.
- Moderately Severe Cognitive Decline. Here, she needs help dressing, bathing and with other daily activities. There will be a pronounced memory loss, much confusion and forgetfulness and intellectual capacity will further deteriorate with more difficulty with problem solving. I have to say here that my mother is often confused but she still can to some extent dress herself and take care of some very basic things. She has not lost much physical capacity.
- Severe Cognitive Decline. At this stage, she needs help with very basic needs like eating, dressing and toileting. My mother is not at this stage, she can feed herself but she needs some assistance bathing, and she is also incontinent and uses pads in case of accidents. The person could also have trouble with sleep, have hallucinations and anxiety, and could be unable to recognize people. My mother has been having hallucinations and anxiety from the beginning of her showing signs of dementia and she's been up in the middle of night often for quite awhile.
- Severe Impairment of Communication and Motor Skills. At this stage, she can't take care of herself at all, cannot walk or talk or smile. This is the final stage.
Life Expectancy of Someone with Dementia
It is expected that a person with dementia will die within about 4 1/2 years after being diagnosed. If they are diagnosed when they are not yet 70 years old, they can expect to live another 10 1/2 years. People diagnosed after their 90th year can expect to live another 3-4 years. People who are very frail when diagnosed do not live as long.
The average person at age 65, who does not have dementia, can expect to live another 18 1/2 years, but the person with dementia might live only half as long.
Help and Care for the Care-provider
This is the most important part. This job I have, I can tell you, will take a toll on you. You will suffer emotionally, socially and financially. But there is help, as they say. You can look around online for resources, and what you'll find is that you are not alone. What you are going through, others are going through. To give you an idea, check out this caregiver's bill of rights.
You should understand that you need help. You will burn out. Probably you think you're stronger than that. You're wrong. Here's a good resource for you. Also, hunt down local agencies that provide respite services and other help for taking care of people with dementia. You deserve a break.
Now, having broken that down, let's keep breaking it down. Here are some things I've found helpful and necessary to do and understand while taking care of Mom.
- Don't idealize her. She can manipulate and be too demanding. Take care of yourself too.
- Don't act like there's something wrong with you when you get angry and depressed. This is one of the most difficult tasks a human being can take on that you have taken on. Yes, take care of yourself too. Worth repeating.
- You are going to be facing mortality when facing a parent with dementia. You've lost them. They have died and are dying, if you can wrap your brain around that. You start to think of losing them and your own death too. You are suddenly confronted with life's most important issue: Death. It's an opportunity really.
- It's going to get personal. That's your Mom. You have some issues with her. But you love her too much to abandon her. But it is likely you have reason to be angry with her too. Like these folks.
- Don't argue. When they are having a hallucination, to them it's real. You are better off reassuring them rather than getting caught in a maze of trying to reason with them.
- Understand that this condition is not cured (generally). You cannot change it and it won't change. You can make life better for the both of you though.
- Find an easy way to encourage them to do things. If it's time for them to go out with the respite worker, and they need to get out for activity and you need a break, talk about how nice of a day it is and how much they love watching kids play at the park.
- Keep a white board on the wall along with a marker with erasable ink. You can write answers to those repeatedly asked questions on the board. It will save your vocal cords.
- Keep things she loses in the same place. She's going to forget, but you're not.
- Take a break. Get respite if at all possible and do something you really want to do. Make it count.
Finally, do what you can to get a decent doctor. Since some dementia is curable and treatable, it is important that they get the right diagnosis and will put the work into actually finding out what is happening.
Take care of yourself. The caregiver also needs care.
It is important that both care giver, and cared for, have care. It is important to make sure the person with dementia has a decent life while they are still alive, with good food and care, along with maintaining some kind of activity that is possible for them to do. Get help. Seek respite services, day programs, counseling. See if family can help. Taking care of someone with dementia is more than a full-time job and you don't want the care-giver, the life-line, strangled, overwhelmed and burned out.
This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2014 Nathan Bernardo
Nathan Bernardo (author) from California, United States of America on April 08, 2018:
No problem, glad to be of help, especially with something as important as this. My mother is now in a nursing home, I couldn't keep up with her care. But she is happy and being taken care of. I hope you and your family are doing well and be sure to take care of yourself too.
Nicole K on April 08, 2018:
Hi there. My grandfather has dementia and my husband and I are helping with his care. I really appreciate your points about taking care of yourself and avoiding burnout, etc. Thank you for the insightful hub and I'm glad your mom is doing well.
Nathan Bernardo (author) from California, United States of America on September 26, 2017:
Hi, Marie. My Mom is doing fine, she had to go into a nursing home this year because I could no longer take care of her. But she is happy and doing well. Yes, education is the best way to approach this issue, the more you know about it the better. I hope you are doing well.
Marie Ryan from Andalusia, Spain on September 26, 2017:
I can see from comments that his post may have been from a while ago. I hope all is still ticking over for your Mom.
I hope you are looking after yourself.
I have just been diagnosed with Alzheimer's Disease and have written a basic post about my experience.
I'm trying to delay the progression as much as I can by reading, writing and learning new skills.
Nathan Bernardo (author) from California, United States of America on September 15, 2016:
Thank you, Peter.
Peter Geekie from Sittingbourne on September 15, 2016:
Thank you for an interesting article and another angle on this catastrophic disease.
Kind regards Peter
Nathan Bernardo (author) from California, United States of America on July 05, 2015:
Thanks, Susanna. Typically, a doctor will run some tests on memory and will also scan the brain and check arteries for signs of stroke. At least, that's what was done in our case. I think it is a good idea to see a specialist too. We just started by telling the doctor what was happening; the confusion, hallucinations, etc. Some of it was obvious by my mother's behavior at the doctor.
Susana Smith from UK on July 05, 2015:
Thank you for writing this Nate, it provides a lot of useful information plus a sense of the human struggle involved in dealing with it, both yours and your Mother's. I think someone close to me may be in the early stages of dementia :( I have no idea how to deal with getting a diagnosis or talking about it even. I'm in denial I guess.
Nathan Bernardo (author) from California, United States of America on July 05, 2015:
Sounds interesting! I look into it!
Arun Dev from United Countries of the World on July 05, 2015:
Patients with dementia need extra care. Recently a new method of care giving method was developed in France. It is called Humanitude.
Nathan Bernardo (author) from California, United States of America on February 23, 2014:
You're very correct about that, SandCastles. Thanks for the support and for stopping by and reading.
SandCastles on February 23, 2014:
Hi NateB11, It must be a challenge for you to look after your mom. It is important for you to acknowledge that you have needs too. You should be able to get help from dementia/Alh's society who will give you respite time (people to come in to look after your mom so you can get a break). Some cruel people make nasty comments (especially about Alzheimers). If a mother gets it, it is passed down to daughters if it is passed down at all but not to sons from what I've read. You take care. SC.
Nathan Bernardo (author) from California, United States of America on February 21, 2014:
Thanks, Dil Vil.
Dil Vil from India on February 21, 2014:
Good health hub and nice info on dementia..