Caring For Someone With Dementia
It's not always easy
My mother-in-law began having problems with her memory in about 2008 or 2009 while her youngest daughter struggled with her third kind of cancer. Almost immediately after Rosie lost that battle, my father-in-law's macular degeneration and enlarged heart started causing him to have two or three trips to one specialist or another every month. Dad called one day at his wit's end. Mom couldn't remember anything. She didn't even want to cook anymore. A doctor thought perhaps she was depressed (and perhaps rightly so with everything that was going on), but my husband and I were pretty sure she had early stage short-term memory loss.
Dad went to be with Jesus in November of 2011, and for more than a year Mom continued to live on her own, but between her own macular degeneration (total blindness in one eye and not the greatest sight in the other) and the stress of living alone, it's become necessary for her to have a lot of extra attention. So my life has changed drastically over the last several months.
One of the things I noticed was that there were some simple things we could do to help mom function as she lives with this cruel disease. So I'm using this page to describe some of the things we've done to help Mom as she progresses with this illness. I should include a disclaimer that I have a wonderful mother-in-law, very undemanding and easy to care for. She doesn't feel a need to voice her opinion very often and isn't hard to live with. I know that I am blessed and not all parents can be described this way. So, while some of this advice might be helpful for you, if you have a more difficult to manage parent, you may have to adapt some of it to your situation.
I hope the things I've learned will help someone!
Photo courtesy of Morguefile
Here's what that Basket Looks like.
Thoughts on Trying to "Teach" a Dementia Patient to Remember
Every now and then I run across a person whom I'd like to train in dementia care. I generally mind my own business, but I really wanted to talk to the daughter of the women in the next bed. You see, recenlty my mother-in-law fell and now she's in the hospital.
The daughter was trying to drill the answers to the standard dementia questions into her mother's head. She repeated over and over her mother's age, the name of the president, the name of the apartments her mother lived in and more. I would really like to buy a small office organization basket and give it to her. I want to ask her to keep the basket full of water until her mother gets home from the hospital.
I'm pretty certain she'll notice immediately that the basket will not hold water. It's impossible. I'd like to explain to her that attempting to get her mother to remember who the president is closely resembles trying to fill that basket with water. A dementia patient's brain doesn't look like a normal brain. There are spots on it that look like holes. It can't hold recent memories. It's sad . . . But it's life.
You see just like a basket office organizer won't hold water, a brain struggling with Dementia will not hold information. You can't pound it in there, you can't train it to remember. You can frustrate the elderly person who wants to remember, but truly is unable.
When I heard the mother in the next bed say, "I don't want you to be frustrated with me." I felt terrible for her. She wanted to remember because she knew it was a problem, but she couldn't. The only good thing is that they won't remember the conversation, so they won''t feel bad for as long.
The Early Stages
What We Believe Brought it On
My husband's mother has always been a caregiver. She was a stay at home Mom long before it was called that. When I married into the family she began to care for her father-in-law who ended his life with severe dementia that they believe was induced by mini-strokes taking portions of his brain. Grandpap lived out his final days in his own home because Mom and Dad lived next door and Mom gave up her life to care for him during his last four years.
It was shortly after Rosie found out that she had her third kind of cancer that we noticed Mom forgetting little things. At first it was just simple things that everyone forgets, like where we put our keys or left the purse. Then it became more and more frequent. Some of her memory loss may have been brought on by depression, but it was when Dad was nearly blind and Mom had to find his antibiotic for his eyes on her own (I didn't mention he was also a diabetic), that I noticed her memory failed her even more when she was under stress.
She was looking for the antibiotic right after he'd come back from getting shots for his macular degeneration. When he and I were in the room and she felt pressured to find it, she had no idea where it was. Dad and I went outside, and I told her I'd just go get it refilled at the pharmacy. It wasn't 10 minutes later she brought it out. Without the stress of us hanging out around her, she was able to locate it.
We quickly deduced that her short-term memory loss was almost completely stress related. When she felt/feels stressed, she has a very difficult time remembering anything. The more stress, the less she remembers.
So, in order to help her with it, we came up with some tangible help that gave her several more years on her own and allowed her to care for Dad until he passed.
The Early Solution
My Father-in-Law said this is what kept him sane
Because the macular degeneration basically blinded Dad, Mom drove everywhere. She hated to drive! However, driving the twenty minutes to town from the country wasn't too bad. She got him to all of his doctor appointments and made it in to church and the grocery store. The problem began when he needed to go to a larger city forty minutes north to get to his eye specialist in an emergency.
My husband isn't sure where they were when Dad called him to get directions. Mom didn't know how to get there and Dad couldn't see. The macular degeneration made it look like Mom was driving through boulders, so Dad was a bit stressed himself and raising his voice in an attempt to help her find her way. They finally got to the doctor, but the forty minute drive home took them about 5 hours. They got lost several times and Mom was a mess. So the first change in their routine was I started driving them anytime they needed to go more than 20 minutes from home. It bit into my schedule a little, but it made all the difference in the world.
The other two things that we soon discovered were very difficult for Mom were paying bills and keeping medicine straight. She couldn't remember what she'd paid and what she hadn't. Her bi-weekly bill paying time began to take longer and longer and she started having late fees which caused her even more stress. So Dad put my name on their checking account and had all of his bills sent to me. Just taking that stress off of her helped immensely.
Additionally, we bought two pill boxes (the kind with 28 holes) and every Saturday I would fill it for the upcoming week. We'd trade them boxes on Sunday at church. Dad was on 17 different meds that he took at four different times every day. Some he took once a day others three or four times a day. Some were for bedtime and others with lunch. She was terrified that she'd mess up his prescriptions and literally kill him!
After we made those three major changes in her life, Dad said that he might actually be able to stay "sane." These changes returned her memory loss symptoms to the simple things, things that don't really matter! We also encouraged Dad to start going out to eat for lunch and dinner most days. For some reason trying to decide what to cook and fixing it was a major challenge for her.
With her only job now to take care of Dad, Mom was able to function and cope. When Dad passed, she was terribly stressed. They had been together since they were 16, married at 17. So, at age 75 or 76, she had spent most of her life with him. The only time they'd spent apart was when one or the other had been hospitalized. One of the things that her other children didn't seem to understand was her inability to make arrangements at the funeral home. They wanted her to pick the casket and the flowers. With the stress of her loss, It was impossible.
Something we did was limit the questions we asked her to "yes" and "no" answers. For instance, "Would you like red roses?" was a question she could answer, while "What kind of flowers do you want?" was not an acceptable question. After the siblings had decided on a couple of caskets, we asked Mom, "Which of these two do you like best?" She could not go into a room full of caskets and choose one, but she could choose one of two choices.
Because Dad had made arrangements to have us take care of all of the stressful things in her life, Mom was able to stay by herself for almost two full years. It's only recently that living alone has become difficult, and it's not even that she can't function. Her mind is just playing games with her, but I'll talk about that in the next section.
Tricks the Mind Plays
Fear Induced by Loneliness
For the past six months to year, my sister-in-law has believed that my mother-in-law is hallucinating. However, I have another theory. As I mentioned before, Mom has macular degeneration. It has completely robbed her sight in her left eye and her right eye vision is 20/50 at best.
It was about six months to a year ago that mom got some neighbors who'd been in trouble when they were younger. Despite the fact they were adults now and trying to better themselves, she remembered the things they'd been arrested for as youth and young adults. These memories brought fear into her life.
Mom was doing pretty well living alone until this family moved in. Then she started "seeing" people around her house, people on her porch and in her yard, even in her tree and on her roof. This is why my sister-in-law thought she was hallucinating. However, when we were with her and she could show us what she was seeing, there was always "something" there. Unfortunately with her macular degeneration and the fear, without someone to help her make out what she was seeing, she always saw a person who had potential to steal from her or hurt her.
She'd stayed at our house on a few occasions, and every time she thought she saw someone here, we helped her see what it REALLY was and alleviated her fear. Someone was supposed to check on her often, at least daily, but that wasn't working out well, and my husband and I lived 20 minutes in the wrong direction. It was hard for us to check on her more than once or twice a week.
Her fear finally caused her to see someone INSIDE her house. I'd been called a few times because of her fear, and after a day or two at our house, she'd wanted to return home, but last Summer it became so bad that she stayed with us for a few months.
What We Do To Make Life Easier - Common Sense Ways to Help a Person Early in their battle with Dementia
There are several things we've done to help Mom cope here at our house. Hopefully some of these tips will help you with your loved one.
- EVERY TIME THEY ASK A QUESTION OR MAKE A STATEMENT, ANSWER AS THOUGH IT'S THE FIRST TIME YOU'VE HEARD IT - When Mom hears a tone in a voice that sounds as though she should already know the answer or as though she's said the same thing before, it embarrasses her and causes her stress. We try very hard to always make her think that everything she says is the first time we've heard it. It doesn't matter if it's the paper she's read for the fourth time and doesn't remember or if it's a question about where to put her empty glass.
- LEAVE NOTES - Whenever I have to leave for longer than 1/2 hour or so, I try to leave a note to let her know where I am. I leave her a note that says, "Help yourself to this coffee." Don't assume they'll remember anything. If they do, that's wonderful! I'm always amazed at some of the things that Mom does remember, but notes help! Along those same lines, have a phone list with the numbers of five or six people near the phone.
- ALWAYS HAVE FOOD AND SNACKS OUT - Mom forgets to eat. She has lost a lot of weight, and it would be easy for her to become dehydrated. A bowl on the table that always has granola bars and snack cakes in it is a great help. I try to keep coffee in the carafe and put a bowl of fruit out often. If I ask her what she wants to eat, I give her one or two options. I have a bread basket near the toaster. My mother-in-law will not open cupboards to look for food, but if it's out and available, she will snack throughout the day.
- FIND THINGS TO STIMULATE THEIR MIND - Mom spent so much of her life caring for others that she doesn't have any hobbies. It took me a little while to figure out what to do with her. Television seemed like a logical choice of entertainment; however, she's offended at nudity and bad language and violence stresses her. One night we happened upon a game show, and I found the answer. Games shows are tremendous for her, and I would guess others with dementia. With no plot, she has nothing to follow. No violence, sex or offensive language allows her to watch stress free and trying to figure out the answers stimulates her brain. She also likes to read the newspaper everyday and enjoys word searches (although she can only work these on days when she knows no stress).
- GIVE THEM A LOT OF HUMAN CONTACT- As I mentioned above, Mom moved back home after just a few weeks, but she still needs the human contact to keep her fear away. So, at least four days a week either my daughter or I or my husband and I spend several hours with her. On Sundays we get her for church and she spends the day with us and then other days we go to her house and take her to eat. Her other daughter is off two of those other days and her other son picks up the seventh day. In addition, she lives in a very small town where her sister-in-law can stop by often and she can walk to the local restaurant and have coffee with people she's known all of her life. So far this works well. We don't know how long she'll be able to live by herself, but this time we spend allows her to lengthen the span.
- OTHER THINGS WE'VE NOTICED - Mom does better when she isn't in crowds where she doesn't know a lot of people. Hospital stays are very detrimental. Recently she had to have a pacemaker, and by the third day she didn't know where she was, and at night tore off bandages.
This is one of those conditions that effect every person differently. Something that worked for my mother-in-law may not be at all helpful for you. Many caregivers are desperate for ideas, so feel free to tell us things you've done to make life easier for your loved ones or their caregivers.
Or just take a minute to tell me you stopped by!
As the Disease Grows Worse
As the disease progresses, there are a lot of terrible side effects and some different approaches we've taken.
- First, because she really wants to live in her own home, she gets angry with us sometimes. She doesn't understand why we won't take her home. When we explain, she thinks that her memory is fine. We try very hard not to argue with her and change the subject when possible. Because she won't remember the conversation it just doesn't make any sense to try to make her understand.
- Second, her anger can cause violent outbursts. I've been blessed to never experience this; however, my sister-in-law has. When one tries to help her understand her confusion, she can get defensive. After a long argument, she can get violent.
- She responds better to suggestions - We've discovered that Mom does not like to be told she can't do something or she's wrong. These are the things that cause the anger the most in these more progressed stages of the disease. So, when she talks like she's seen people or seeing them, we never tell her she isn't. I do tell her that I don't see anyone, and often suggest that perhaps she saw a reflection or something of the like. Additionally, on those occasions when we need her to cooperate, we always make it a suggestion. "Do you want to. . .?" will almost always produce the desired result, while "You have to . . . " brings about the exact opposite response.
- Conversations need redirected - Sometimes Mom will be talking to "someone," and the conversation will be one that creates agitation or worry. When that happens we just stop her mid-sentence and ask if we can get her something. We distract her with coffee or a bit of real human conversation until we feel as though those negative thoughts may be done for a while. Additionally, when she is dressing, I interrupt her every three or four minutes and simply ask, "Are you finding everything OK?" (I lay out all of her clothes). Unfortunately, she can forget what she was doing in the midst of changing and our little interruptions can help her refocus. When left to her own devices she's been known to pack up her entire bedroom instead of changing clothes.
There are many other unpredictable symptoms to this disease, but the one single most way to keep things on an even keel is to always respond with gentleness and as if it's the first time I've told her. It's frustrating to be sure, but I can't imagine how frustrating it is for her to be trapped in that mind.