Today’s feature is written by a longtime friend and pretty wonderful person, Kara Wehby Shuror. Kara shares with MNU her experience as one of her mother’s caregivers during her last years with Alzheimer’s disease. Thank you, Kara, for being brave and sharing your story.
My mother was diagnosed with Alzheimer’s disease when she was 64 years old. I say “diagnosed” but as the neurologist explained, Alzheimer’s cannot really be officially diagnosed without an autopsy. She was gone by age 69. Those were the most challenging five years my family has ever experienced.
What is the first thing we should know about dealing with Alzheimer’s from a caregiver’s perspective? What about the patient’s perspective?
You need to research the disease so that you really know what you are dealing with. You need to immediately develop a network of support and ensure that you include support not just for the patient but for you and the rest of the family.
First and foremost, you need to make sure the patient is safe. You cannot impact the disease but you can make sure they are in a safe and protected environment.
What has been the most difficult lesson of your experience?
The most difficult lesson we all learned during that period was that you cannot fix it. No matter what you try to do, no matter what doctor you look to for help, Alzheimer’s has no cure. All you can do is try to make the process as comfortable as possible for the sufferer.
My family is stubborn. We did not want to accept what was happening. From the moment my mother informed us that the neurologist told her she was showing signs of Alzheimer’s, we did everything we could to show her she was just overreacting. After all, she was way too young for something like Alzheimer’s. Looking back we can see how she had been changing over the previous few years.
The early symptoms included increased frustration and paranoia. She then started seeing things in the trees in the backyard and telling us stories that didn’t make any sense. She would obsess over tiny things and would call each of us dozens of times a day to tell the same story. She finally started wandering away from the house and my father was not equipped to handle her needs anymore. The search for full-time care was far more difficult than I expected. I did a ton of research and contacted a number of places. We had no idea it would be so expensive. It was three to four times the cost of retirement living and two to three times the cost of standard assisted living. Resources are very hard to come by…there were also legal issues.
How can we make it easier on the ones we love, be it the patient or our own families?
I think it is really just about acceptance. If you cannot accept what is happening to your loved one, you are not prepared to provide the care that is necessary. You fight against it and that can unintentionally hurt that person you want so desperately to help. Once you can accept the reality, you can give them what they need. I think this helps the family as well. You become more patient with each other, everyone can contribute to your loved one’s care and you stop blaming each other. At least that was my experience.
Often the caregiver also has a spouse or children or a demanding job or a myriad of other things going on. How do you juggle it all and what can others do to help you?
It is incredibly difficult. Everyone has to contribute because one person cannot do it on their own. You need to rely on your co-workers to understand and assist. You need to allow the hired caregivers, whether it is in-home help or a memory care facility to do their job. As long as they are safe, you can get the relief you need to make sure you are still giving your kids what they need and trying to take some time for yourself. Most importantly, you have to know that there is no pride in denying help. Being a caregiver, even a part-time caregiver, takes so much out of you. Ask for help and accept it.
What is the one thing you know now that you wish you knew when it all started?
That it was real and that she really had no control. If I had stopped fighting against it, stopped blaming her for her behavior or blaming my dad, I would have had more time with her.
What kinds of practical things can we do (pre-during-post)?
Make sure your legal documents are in order well before you or someone you love experiences illness. Actively work to assemble a support structure. Although this process can evolve organically in some ways, you really need a plan with go-to people.
What are some of things about Alzheimer’s that people misunderstand or incorrectly assume?
People portray Alzheimer’s as “forgetfulness.” We hear a lot about Alzheimer’s sufferers forgetting their loved ones but my mother never forgot who I was. She couldn’t remember my name. In the end, she really couldn’t speak it anyway but she always knew me, always looked at me with recognition in those eyes. She never forgot me. I am grateful for that. What she did forget was how to function. Our brain sends signals to our body to enable action. She could no longer do that. Even in stages where I knew she could hear the words I was saying, she couldn’t figure out how to get her body to respond. If you needed her to pick up her foot so you could put on a sock, she might lift her arm or just try to move her body. It’s like they only have part of the puzzle. They know they have to act but cannot process the action. It may have started with my mother mixing up words and putting lipstick on her eyelids but people with Alzheimer’s eventually “forget” how to swallow. They forget how to breathe. The brain/body connection betrays them.
What can we do to clarify these misconceptions?
I just feel like it is not portrayed accurately in the media. I watched “The Notebook” not knowing there was an Alzheimer’s theme. It left me sobbing of course, but also a little angry. The character was so well put together.
She just started everyday like it was brand new. This disease takes far more away from its victims. It slowly rips away everything that makes them the person they are. It leaves behind a shell and we search for moments to find that connection to their soul while ultimately just trying to help them die.
What kind of support is out there? What helped you the most?
We all tried to cope in different ways. My sister found comfort in a support group. I found myself trying to recreate happy memories from my childhood…and crying…a lot of crying. I found myself reading a lot of stuff posted by Maria Shriver (www.mariashriver.com). I really felt like she understood the reality and could share her pain. Much of her info was presented in a positive way but she shared people’s real experience and that helped me feel like I was not alone. My father has continued to struggle. He had the hardest time accepting that something could be so wrong with his wife. When she died, he was still in denial and I really think he still is. There is help out there but you have to be willing to put yourself out there to access it.
Now that your mom’s journey here is over, what are you still grappling with? How does what happened to her affect you and your family?
I grapple with the loss of my mother, the longest relationship of my life, everyday. I see her and recognize what I learned from her in my everyday activities. I don’t think we fully realize all that a mother provides for us until she is gone. I also grapple with a great deal of fear; fear for my own brain health and that of my siblings and child.
What would be the one thing she would most want people to know?
That she was still in there even though we couldn’t really find her anymore. That the patient needs love and affection and care. She would ask that people stay close to their loved one, even if it doesn’t seem like they know the difference.
Kara is an accomplished businesswoman, a longtime volunteer and mentor, a good friend and a loving wife and mother. Along with her father, sister and brother, Kara cared for her beloved mother for five years.