“The disease is fatal. There is no cure, so I feel like once the diagnosis is made, the medical professionals just put my mom into a holding pattern. She was put on level 1 hospice and it’s like they just see her and pat her (and me on the shoulder) knowing she’s going to die. Aging sucks, but this is not normal aging. This is a hopeless, terminal disease, so the system just gives up.” Writes Jennifer, whose mom has Alzheimer’s.
There are 5.7 million Americans who are living with Alzheimer’s today. According to the Alzheimer’s association, Alzheimer’s disease is a degenerative brain disease and the most common cause of dementia. There is currently no cure for the disease which is the 6th leading cause of death in the U.S.
The current cost for treating Alzheimer’s in America is $277 Billion with projections eclipsing $1 Trillion annually by the year 2050. And, as deaths related to heart disease have reduced by 11% over the past many years, deaths from Alzheimer’s have increased upwards of 120%.
Watching a loved one endure such a horrific disease is not something to wish upon your worst enemy. But to also play role as caregiver is something only reserved for that of the selflessly courageous amongst us.
We recently interviewed Jennifer to learn more about her experience as both daughter of and caregiver for her mom with Alzheimer’s.
What rare type of Alzheimer’s does your mother have?
My mom has Alzheimer’s from a traumatic brain injury. In her late 50s and early 60s, my mom had two bad falls that both resulted in concussions. Then in 2009, she suffered a subdural hematoma in her brain. Her Alzheimer’s is similar to the type of Alzheimer’s football players get.
Most people get Alzheimer’s due to genetics, a disease like Parkinson’s or just aging, but with my mom, it is clear her Alzheimer’s came from the subdural hematoma in 2009. Her symptoms started right after that. There is no family history of Alzheimer’s and my mom is the only person in her entire family who has ever had it … so far. Though her Alzheimer’s is roughly the same with the same symptoms, her path to it is very rare. (I read that only 1% of people with ALZ can track it directly to a brain injury. I can’t find that stat anymore though, I looked.)
How does it affect the person differently than a more common form of the disease?
I can only write about my own experience with my mom. Most people experience a long time with mild impairments (things that seem normal like forgetting where you put your car keys or forgetting the name of someone you just met), but my mom seemed to go right into the moderate stage of Alzheimer’s and skip the slow decline. Suddenly, she had a lot of symptoms and seemed very different than she was. So many people are diagnosed and have time to write things down, talk to loved ones, and prepare. But my mom was partially gone by the time we even knew what was going on.
Without a cure, how is this form of the disease treated?
It is treated the same way as traditional Alzheimer’s and dementia is treated, with drugs that can slow the progression of symptoms, but not slow the damages of the disease. There are two medicines my mom took that did have some effect in slowing the progression of her symptoms. One was used to slow memory loss, confusion and other problems thinking, while the other was added as my mom’s illness got more severe. My mom started taking these meds in 2016.
What does a normal week look like for treating this form of the disease?
A few years ago, my mom would see her doctor every few months. She was given control of self-administering Tylenol or other over the counter meds. She is cared for by Elder Place, a Providence organization, and they used to take her to their center every Friday for food and socializing. We went out a lot, so she didn’t isolate herself. She did chair yoga. I felt like it was normal assisted-living stuff.
Now, my mom wears a tracking bracelet. She has an emergency necklace. She has a CNA who is responsible for being with or near to my mom while she is awake. Her case manager sees her often, she doesn’t attend Elder Place anymore because she doesn’t respond to it (it makes her angry). Her medicines remain the same, but she is now on an anti-depressant and some medicine to help her sleep because she is so much worse at night.
Has treatment been effective?
Briefly effective, yes. But I know that the “treatment” was just masking the progression of the disease. There is no cure for Alzheimer’s. It is 100% fatal. I did notice when my mom started taking the Alzheimer’s meds that she hit a plateau and she didn’t get a lot worse. We had a good couple of years where nothing seemed to change. Now the effectiveness of the medicines has worn off and my mom is in a steep decline.
When a diagnosis was made, what was the hardest part for you and your family?
The hardest part was understanding that the way my mom was acting was because of her disease and not because she was doing it on purpose to be hurtful. The other difficult part was deciding what living arrangements were best for her, specifically whether we should move her from Arizona to Oregon and where she should live.
How have you adjusted how you provide care from when you first started?
When my mom was first diagnosed, and we decided to move her up to Oregon, she was upset and angry and she no longer had a filter for what she said. I felt put upon when I started caregiving and I held back on loving my mom and accepting her. At the time, I got pretty upset and would leave a visit with her and tell myself if she was going to be mean to me then I didn’t have to go visit her. I didn’t have to call, and she deserved to be alone. It took a while for me to separate her from her disease, and eventually, I set aside time for regular visits with her.
Now my typical caregiving routine is very hands on. I talk to my mom every day to check in. I talk to her CNA almost every day to check in. I talk to her case manager once a week. I see my mom a few days a week. I still try and take her out a couple times a week, if she’s up for it, but now I get there an hour or two early to visit and give her time to get ready. No matter what mood she is in or what she says, I am there. I console her if she was upset, I say “OK” a lot if I don’t know what else to say and if she is in a good mood, it’s a blessing.
What advice would you give families and first-time caregivers of those affected with this disease?
My first recommendation is to do a lot of research about Alzheimer’s. Learn the symptoms, the stages of Alzheimer’s progression, and get very involved with your loved one’s doctors. Learn to be their advocate, because eventually they will not be able to advocate for themselves and they will rely on you.
Find an Alzheimer’s support group and get to know other people who are caregivers. My mom doesn’t live with me and for a while, I thought that I wasn’t really a caregiver, so I shouldn’t go to those meetings, but I am a caregiver and I do a lot. I carry a lot of weight and having someone to talk to who understands what I’m going through is so incredibly helpful.
Finally, find that wellspring of unconditional love inside yourself. You will need it in the most difficult times. Alzheimer’s is stealing my mom from me one memory at a time, one day at a time, but I have also been blessed in a way I would never have thought possible. I’ve come to know who she really is deep inside. Her facade is gone, her anger had faded, her thoughts are jumbled, but her soul is still in there and I’ve built a relationship with her that I never would have had were it not for this disease. My mother raised us on her own. She worked three jobs, she had no social life to speak of, she gave up so much to make sure we had what we needed and wanted. Though it didn’t feel like it at first, it is my blessing to be able to walk with her to the end of her life and take care of her.
Thank You Jennifer!
Patient Services Inc., stands with Jennifer and the 5.7 Million battling Alzheimer’s today. We would also like to thank Jennifer for sharing her story. We stand with you, your mom, and your entire family as you walk this journey together.
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