Personal Experiences Caring for a Loved One with Dementia or Alzheimer’s
Dementia is a cruel disease! With over 400 different types of dementia, every caregiver's story is a little different than the next, but love and loss are at the core of each one – a love so deep it hurts and a loss of the person they once knew.
June is National Alzheimer's and Brain Disease Awareness Month. According to the American Speech-Language-Hearing Association (ASHA), 5.7 million Americans have dementia, with Alzheimer's accounting for 60%-70% of these cases.
When your loved one is diagnosed with dementia or Alzheimer's, your role subtly changes from that of a spouse, son or daughter, sibling, etc. to that of a caregiver. Even if you're not the primary caregiver, you'll care for your loved one in some form throughout their illness.
I lost my dad, who suffered from dementia and other health problems in 2017, and my sister-in-law's mother passed peacefully in her sleep after a long battle with dementia in 2013. My sweet friend's mother continues to battle dementia after 10 long years.
Through our stories, I hope to offer you a glimmer of hope, along with some encouragement and support.
First, let's take a look at dementia and Alzheimer's and the role of caregivers for those afflicted with these diseases.
Dementia and Alzheimer's Disease
The National Institute on Aging (NIA) describes dementia as the loss of cognitive and behavioral abilities so much so that it interferes with daily life and activities. These functions are:
- Language skills
- Visual perception
- The ability to focus and pay attention
- Lack of emotional control
- Possible personality changes
The stages of dementia vary from the mildest stages where it's just beginning to affect a person's cognitive ability to it's most advanced stage causing a person to be dependent on others for their everyday needs.
The NIA states Alzheimer's is the most common form of dementia. It's an irreversible, progressive brain disorder that slowly destroys a person's ability to think and reason, and eventually perform everyday tasks.
While all dementia or Alzheimer's patients experience an individual journey, they will pass through specific stages, according to the Alzheimer's Association, in some form and eventually lose all ability to function independently.
During the early stages, most patients will be able to function independently. Their family, close friends, and co-workers may begin to notice they're having a hard time with the following:
- Coming up with a word or name
- Remembering names of new acquaintances
- Performing tasks in social or work settings
- Forgetting recent material such as books or movies
- Losing or misplacing items
- Having a hard time planning or organizing things
As a caregiver, your role during this time is to support and encourage your loved one. Establishing a routine they can follow and helping them express their emotions are essential aspects of maintaining their independence.
The middle stages are usually the longest and can last for years. The patient's ability to function normally will decline during this stage, and the caretaker's role will increase. For the most part, they can still participate in daily activities but will need help.
The symptoms associated with this stage will vary with each individual, but you may start to notice that your loved one:
- Forgets events and parts of their personal history
- Becomes moody or withdrawn, especially in social situations
- Is unable to recall personal information like their address or telephone number
- Is confused about where they are or what day it is
- Is unable to choose proper clothing
- Begins to lose control of their bladder and bowels
- Develops changes in their sleep patterns
- Tends to wander and become lost
- Demonstrates personality and behavioral changes including delusions and compulsiveness
- Exhibits repetitive behavior like hand-wringing or tissue shredding
As a caretaker, these middle stages can be very taxing. Your loved one's day-to-day functions get harder, and you have to help more and more. As you help, they will probably get frustrated and angry, so it's necessary to have patience and understanding, which is difficult at times.
Don't be afraid to ask for help or for some "me time" from family, friends, and support services.
During the last stages of dementia or Alzheimer's, the patient won't be able to react to their environment or the people around them. However, appropriate actions and stimulation such as listening to their favorite music, being around family conversations, and the gentle touch of a loved one can do them a world of good.
At this stage, individuals may:
- Need help with daily personal care
- Not remember recent experiences or where they are
- Lose the ability to perform physical tasks such as walking, sitting, and swallowing
- Not remember how to communicate
- Develop infections easily such as pneumonia
As taxing as caregiving can be during the middle stages, the late stages are even harder. The last stages are the most challenging time, mentally and physically. It's hard to watch someone you love completely lose all ability to care for themself. Again, don't be afraid to ask for help.
Our stories are different yet so similar.
There is so much associated with the job of caregivers, full time, part-time, or occasional, it doesn't matter – it's every day, all day because dementia doesn't go away. But when you're asked to talk about it, it's hard to know what to say.
Do we talk about the things we first noticed, and how we tried to ignore them, or how we tried to cover, or when it got bad enough that we couldn't do either? Do we tell you how we would get frustrated and lose our temper just to feel awful later? Should we explain how much it hurts to see your dad or mom or spouse not know how to write their name, or change the TV channel, or feed themselves? Because we can tell you all of that.
We can also tell you about the small things we began to celebrate as our loved ones passed through the stages of this horrible disease, how we would get over-joyed at their slightest accomplishments, and smile and laugh with them at the simplest things.
My dad loved it when I would take him a root beer float. He didn't remember from one day to the next what it was, but every time he would say, "This is the best thing I've ever tasted!" Mom and I always held our breath, hoping he still loved it and got excited right along with him – every time!
Linda's mom was in a facility that specializes in taking care of dementia and Alzheimer's patients. The nurses would take her into the office and give her a stack of blank papers, envelopes, and a stapler. She would spend the afternoon tri-folding and stapling her papers, and then stuffing them into envelopes. She was happy when she could be "at work," and everyone around rejoiced with her as she reveled in her job.
Amy's mom gets so excited over a piece of pie! "Pie, pie, pie, pie," she exclaims, only to eat a small bite or two, then refuse to eat any more. But, her happiness is contagious, and you can't help but get caught up in her excitement and clap and cheer for her as she enjoys that small taste of sweets.
Linda describes dementia as the "manifestation of the perfect circle of life." A person who starts in diapers, having to be fed, cleaned, and thoroughly cared for, grows, and becomes self-sufficient, taking care of their own needs and wants. Then, dementia or Alzheimer's enters the picture, and they slowly begin to forget everything they ever knew and learned. Their life circles back around to being cared for again, in diapers, and fed.
My dad, Roger Hale, better known as Buddy to family and friends, was the foundation of our family. Like most fathers, he was the strong one we all leaned on for support. He never met a stranger, and everyone loved being around him. He was happiest when he was outside, clearing his land, riding his horses, or team roping with his buddies.
Dad started showing signs of dementia a few years before my brother, Pete, and I noticed. Mom says she knew the signs were there, but she did what she could to cover for him. She didn't want to admit it any more than anyone else would have.
I think Pete and I knew what was going on with Dad long before we were willing to admit it as well. We would see Dad for a few hours at a time, and he was extremely good at faking it, and, as we began to suspect things, we were really good at letting him fake it.
I often think of how hard it must've been to know he couldn't remember things and tried to cover it up.
Dad had hip replacement surgery, and the anesthesia's effects caused him to hallucinate and kind of go crazy. This was frightening. Partly because it's hard to witness, and partly because we couldn't continue to ignore what was happening.
We've since learned that this result from anesthesia is a fairly common occurrence with people who have dementia.
Dad's craziness subsided after about two weeks, but he was never the same. He began clicking right through the stages of dementia. On one of our drives to the doctor, he was amazed at the apartment buildings. He said, “It might be kind of fun living with a lot of people like that.” Mom and I had a good chuckle because he never wanted to live anywhere except the country.
Mom began to make daily changes to help him as much as she could. For example, she would only put out the utensils he needed for his meal because he couldn’t remember you can't eat soup with a fork. Eventually, a cancer diagnosis just added fuel to the fire.
Mom took care of him up until the day he died. She never complained although I know it was hard on her. Pete and I helped where we could, but the brunt of the burden was on her.
Through tears, Mom says, "It's hard when somebody you've always thought of as strong and invincible can't do the things they've always done. It's very hard."
I asked Mom what advice she would offer to someone that's beginning this journey, and she had some pretty awesome things to say. First, she says, "you have to accept what is happening because until you do, you can't really handle it."
Secondly, she says, "The most important thing for your partner is to know that you always love him or her." She added, "I think Dad always knew I was there for him. I don't think he ever doubted that I would be there."
Mom remembered how she would get irritated at him and holler and fuss, and he would fuss back, "because we were two human beings, but underneath it all, he knew I was there and would take care of him."
Mom added again through tears, "You just have to tell yourself that even though there are bad moments, you have to enjoy them, because they're the last moments."
Joann Meek, my sister-in-law's mother, was a sweet, loving, gentle soul. Self-sufficient and independent, Joann lived on her own in a retirement community where she stayed very active with exercise and water aerobic classes when she wasn't traveling. She was a registered nurse and the head of the labs at Children's Hospital in Dallas when she retired.
Joann developed a heart condition that required a pacemaker, and she, like my dad, reacted to the anesthesia by saying and doing things way out of character. This was the first time any of her children, who all lived in other towns, noticed something was wrong.
Linda stayed with her mom for a few days after the surgery and noticed there were things out of place. "I found puzzle pieces in the refrigerator and a fork in the medicine cabinet," she recalls.
Linda and her siblings began comparing notes and realized that Joann had been covering up her dementia for quite some time.
With Joann living alone, her kids had to make medical decisions for her.
It was interesting to hear Linda explain how each of them handled the situation differently based on their life experiences.
"Kevin, the lawyer, wanted to throw money at it and fix it that way. Craig, the doctor, wanted to medicate and figure it out medically. Margo, the oldest, was in denial and would argue with Mom to try to make her understand so she could get better. I was the kindergarten teacher who dealt well with young children, could talk to young children, and be patient with young children – therefore, I could communicate with her the best."
Each child had their role, one not being better or more important than the other – just different.
They ended up moving Joann to live in a home by Craig so he could oversee her medical needs, but they eventually moved her to a facility for dementia and Alzheimer's patients near Margo where she was happy and well-cared for until she passed.
Linda says one of the hardest parts of her mom's dementia for her to cope with was the personality changes. "I felt like I was losing her because I was losing her personality," she says.
When Joann would say something mean or act unkindly, Linda says she remembered something important a friend told her: "That's not your mom, that's the disease." This statement of reassurance helped her handle many situations.
Linda's advice to someone starting this journey with a loved one was threefold. First, she says you should educate yourself to understand what you’re dealing with from the beginning. There are tons of books to read and websites you can go to for information. A great place to start is Understanding Alzheimer's Disease - What You Need to Know, published by Us Against Alzheimers.
Next, she says, "Allow yourself to grieve." Tearfully she added, "You're losing that person slowly, and you can't fight it. You have to accept it and allow yourself to grieve."
A little hesitantly, Linda also added, "You don't always share this because everyone can't understand it, but when they do finally pass away, it's almost a blessing because you know they are whole again."
Her last piece of advice is to "keep your loved one comfortable, happy, warm, well-fed, clean, and loved, whether that's in your home or a facility. Do what you need to do to take the best care of them."
Suzan Roberts is the mom of Amy Booth, one of my dear friends. Suzan was diagnosed with dementia in what seems like a lifetime ago. She has been living with this disease for 10 years.
I had a great visit with Amy, her Aunt Donna, and her mom a few weeks ago. I discovered a lot about their family that I didn't know. Suzan is in the last stages of dementia and is considered non-verbal. She did say a few words while I was there, but Amy says they haven't been able to communicate with her for about six years. "That has been one of the hardest parts for me," she says.
Suzan asked who I was and was delighted there was pie to eat, but other than that, she slept or laughed.
While she was napping, she began laughing so hard that the three of us joined in because her sweet gift of laughter was so contagious.
Suzan, a loving wife, mother, sister, and grandmother, retired from her job at Sears after several years but decided to go back to work for an insurance company. They're the ones that began noticing little signs of forgetfulness here and there. After four years on the job, they let her go because of the mistakes she was making.
During this same time, Amy started to notice signs of dementia in her mom as well. "I first knew when she called and asked me how to write out the property tax check."
"Later that year," Amy added, "Mom would get confused when we played 13 Card Rummy that we played every year during the holidays."
Suzan was aware she didn't know things, and she became frustrated. Amy says she would cry and say something like, "Everyone is going to think I am stupid."
This was heartbreaking for Amy and her family, but they gently reassured her that wasn't the case.
She lives at home with her husband as her primary caretaker. Amy's brother and his family have moved in, and his wife takes care of Suzan while Amy's dad is at work.
Amy and her Aunt Donna have some excellent advice for those living with a loved one who has dementia. Amy says, "You've got to have a lot of love. If you can't be the main caregiver, you've got to know that you have someone that dearly loves your loved one."
Aunt Donna feels that patience is a significant factor: "It takes a lot of patience to care for someone with dementia. If you can't handle being the caregiver, or if you're someone that can't deal with something like that, it's OK to ask for help."
Amy added to Aunt Donna's statement by saying, "It's super hard. If you get someone to help, they have to be very passionate about their job and very compassionate with your loved one."
"Educate yourself. Read books about others that have gone through this," Amy says.
Amy says her dad went through a stage where he was "very irritated, irritated with God, irritated with Mom, and he felt cheated because his wife was diagnosed so young."
Reading other’s stories "helped them all on a whole new level."
They still have a long journey ahead of them, but if you could feel the love I felt between them, you would know, as I do, that they're all going to be OK.
Advice from My Brother and Me
Neither Pete nor I were the primary caregivers for my father, but we were both involved with him and my mother during his illness. Our take on things is, like Linda's and her siblings, based on our life experiences.
Pete has always been the big brother, wanting to make things right and do whatever is best for everyone involved. It's one of the qualities I cherish most about him.
His advice to someone starting this journey, or to anyone who has a family history of dementia or Alzheimer's, is to have a plan.
"First off, you have to recognize and admit the problem, and the family needs to have a plan," he says. "Have a plan so you can stay ahead of the curve a little bit. If you make a plan, your kids won't have to."
I just smiled, listening to him and knowing he is always thinking about making things easier for others.
I feel I played a functional role with my dad, because I would visit with him in his world while giving my mom a break. We would listen to music, share a sweet treat, and just visit. On good days, he would reminisce, and it made perfectly good sense. On other days, I would just smile and agree and help him find his words.
My advice is typical of me and my personality. I am all about family and will choose family time over any other experience, hands down.
I would tell you to do two things. First, spend as much quality time as you can with your loved one. I grew to recognize that it didn't matter if it was a coherent time or not; it was still time.
Dad and I spent a lot of time holding hands, often in silence. I hadn't held my dad's hand like that since I was a small child. Why, I'm not sure, because it's one of the best feelings in the world.
My second piece of advice comes from something I wish I'd done better. Mom took impeccable care of Dad. It's what she always did for her family, and I guess I didn't expect anything different from her. Looking back, I wish I'd been there for her more, to support her and help her.
I was always concerned about Dad, but Mom could have used more concern in her journey as well. So, be mindful of the primary caregiver. They will tell you they’re fine, and they probably are, but be there for them, too.
No matter how you view it, dealing with dementia or Alzheimer's is hard. Each experience with this disease is unique, but with support and love, you can make it through.
Through this journey, we found a new strength we didn't know we had, and a depth of love we didn't know existed.
"There are always flowers for those who want to see them." –Henri Matisse
Seek help from those willing to give it, take care of yourself, and be your loved one's best advocate.
Every family has to decide what the best approach is for them and their needs. There is no right or wrong. Follow your heart and let love lead the way.
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