“When I was growing up, I remember my mom would always say, ‘If you are doing your best, then that is enough.’ My mom does not tell me this anymore… she is no longer able to. Near the end of 2013, I was shopping in Target. You know how when it comes to certain ‘events,’ you can always remember where you were and what you were doing? That is the case for me when it comes to October 9th of the aforementioned year. I was pushing my red cart aimlessly down an aisle when my phone rang. ‘Hi Mama,’ I said as a cute top caught my eye. ‘Hi Honey,’ she replied in a tone that instantly revealed something was terribly wrong.
A few months prior to this phone call, my mom had tripped over her dog and fell. She had been attributing her more recent issues with walking to just that. As time passed and her issues were not resolving themselves, she decided to see her doctor. ‘I have Parkinson’s Disease (PD),’ I heard my mom say. I do not remember much more of that conversation, if I bought the cute top, or just abandoned my cart in the aisle. But none of that mattered. All that mattered was my mom was sick and I was scared. She was 62 years old.
During this time, I was working full-time as an RN in hospice. Besides a career, I was also balancing a family that included a husband and three kids. My son was already living outside the house but my daughters were around 15 and 1. My mom was a retired teacher. She and my dad divorced when I was 11, so she had been living independently for a long time. For a while, my mom was managing and so was I. Several years after my mom’s initial diagnosis, I noticed some more significant changes. She appeared to grow more anxious and her behavior, at times, was odd. Then one night I received another call from her. ‘Some men have broken into my house. There is blood all over the walls,’ my mom explained in a tone that turned my own blood cold. It took me about 10 minutes to drive from my house to hers. There were no men. There was no blood. There was my mom, wild-eyed and terrified and so was I.
After that night, it was not long before my mom was admitted to a Geriatric Psychiatric Unit (GPU) where she spent approximately two weeks. I can not begin to explain what it feels like to visit your mom in a place like this. She appeared ‘broken,’ and I desperately wanted to ‘fix’ her. It was during her time in the GPU when we received another diagnosis. ‘Lewy Body Dementia,’ the doctor was explaining. I did not need an explanation. I knew exactly what it was and exactly what it meant. I was, once again, devastated.
Dementia is an ‘Umbrella Term’ under which there are hundreds of types. Alzheimer’s is the most prevalent, but many people have heard of Lewy Bodies (LBD). Dementia is progressive and terminal. At the time of this second diagnosis, I was still working full-time. I still had a husband. I still had my daughters living at home (now around 18 and 3). I now also have a mom who has PD and LBD and requires around-the-clock care. I still had no idea what I was going to do.
Let me pause here for a moment and explain something about being a caregiver. Often, it is a role that individuals are thrust into. Usually without much warning. It can feel extremely daunting and overwhelming. It is not an easy role to fill. In July of 2016, I became the primary caregiver for my mom. My grandma, my mom’s mom, was also living nearby. Unlike my mom, she was (and still is) doing well and was (and still is) completely independent. Together the two of us set out to find a facility for my mom to be placed. Finding a ‘decent’ facility is not an easy task and it was not really helping our already sad situation. Eventually, we found a place we both felt comfortable with. My mom had her own room, and the facility was located evenly between my grandma’s house and mine.
That first year was the beginning of my struggles to care for my mom. If you have never cared for a loved one, then it can be difficult to fully understand what it all entails. I was now responsible for coordinating with the staff, managing medications, paying the bills, renting out my mom’s house, taking in her dog, updating family and friends, making sure my mom had the things she needed… the list goes on, and on!
There were incidents that would arise. My mom had many falls and each time the facility would send her out to the ER. I think we were in the hospital 13 to 15 times that year! There were also bouts of aggression and attempts to flee. At one point, I had to pay an additional ‘sitter’ to ensure my mom would not leave. To say it was stressful would be an understatement. Then there is the G-U-I-L-T! I felt guilty I was not being a good enough wife, mom, daughter, friend, and/or employee!! I was trying to be so many things to so many people and it just never felt like it was enough. To say it was exhausting would be an understatement.
Over that year, my mom had a rapid decline. As a hospice nurse, I was fully aware she was eligible for hospice services. Exactly a year after moving my mom into the facility, my amazing husband suggested we move my mom in with us. Quite frankly, none of us wanted her to pass away alone. To say it was heartbreaking would be an understatement. So I quit my job, we sold our three-bedroom, two-story home on one side of town, and bought a four-bedroom, single-story home on the other side. Interesting fact: the new house ended up being four houses down from my childhood home. The same house my mom still owned, and we were renting out. I am a believer things always happen for a reason.
Well, another thing I am a believer in is how much our environments affect us. Once my mama was out of the facility and in our home, she really began to rally. While in the facility, she became essentially wheelchair-bound, incontinent, was barely eating, lost a significant amount of weight, hair was thinning, and was sleeping more around the clock. Now she was walking again, using the restroom, her appetite increased, she gained weight, her hair grew back, and she was more alert and awake throughout the day. It was absolutely wonderful… but, if I am being really honest, it was also absolutely not what we were prepared for. Moving in my mom was intended to be a short, temporary situation. Now we were facing living with my mom and dementia indefinitely! Please do not misunderstand. I was thrilled my mom was doing so much better, but I was not thrilled for the unknown ahead.
I dove headfirst into my new role. My mom had always gotten up early, so I made sure I was in her room by 6:45 a.m. I did hire some wonderful women to help me, but in the beginning, I would make sure I cleaned and clothed my mom before they arrived. I told myself I had to protect my mom’s dignity and it was better if her daughter did these things instead of a stranger. I made sure she was able to go to her local Starbucks each morning. She had been meeting a ‘coffee group’ there for years. If one of her caregivers was not able to take her, I would often change my plans to get her there. While at home, I would attempt to keep the noise level of the house to a minimum. That is not always easy when you have three dogs, an 8-year-old who has lots of neighborhood friends, and a husband who likes to watch action movies at a movie theater level volume!!
Without realizing it, I was slowly swapping out my own life for my mom’s. When I did finally realize it, the resentment grew! I was struggling big time. I did not want to do this anymore. I got angry… actually, I was pissed! I have one brother, but he was not helping. It seemed as if some of my mom’s friends were not coming around anymore. I felt extremely alone. Caregiving and dementia can feel extremely lonely and isolating. Dementia is difficult to look at and often people just choose not to. I understand that feeling. I often did not want to look at it, but it was in my house and I did not have many places to hide. I was exhausted and depressed. I felt helpless as I watched dementia slowly stealing my mom’s life and now, it felt as if it was also stealing mine… I had to do something. I had to learn how to have a relationship with dementia. At this point, I realized it was not going anywhere. So, through many trials and errors, I have learned how to do just that.
Dementia SUCKS and I hate it. It slowly steals the person you love not once, but twice. It is extremely cruel. Over the last several years, I have watched my mom slowly decline. At this time, she is again completely wheelchair-bound and struggles to bear any of her own weight, even with assistance. She needs help with everything and although she is only 5’4’’ and weighs less than a hundred pounds, this is still sometimes difficult. She does not speak much and when she does, her voice is so soft it is often hard to hear. I miss my mom; the mom I once knew. I often wish she were still here. I wish she were still like other moms: able to give me advice, go to lunch, babysit her grandchildren, or comfort me when I am sad. But she is not like other moms. I must make decisions for her, make her lunch, find her a ‘sitter’ and comfort her when she is scared, confused, or sad.
Dementia SUCKS but I have learned how to live with it. Like every relationship, there is give and take. I allow myself to feel all the emotions, the good and the bad. I LOVE my mom and have learned to find the joy amongst the sadness. I have also learned how to take back my own life. My mom lived with us full-time for a while, then part-time and as of last year, she is living back in her house full-time with round-the-clock care. Remember her house is just down the street from me… Everything happens for a reason.
If you find yourself suddenly thrust into the role of a caregiver, here is what I would advise:
1. Take a deep breath (do this anytime, anywhere, and as often as needed).
2. Educate yourself. Learn about your loved one’s disease and learn how to have a ‘relationship’ with it.
3. Create a support system. Learn to lean on family and friends. Find a community, there are amazing ones online. Join a support group or talk to a therapist (I see one every other week). Hire help or see if you qualify for assistance.
4. PRACTICE SELF-CARE!! Yes, I am screaming that at you because it is that important!
5. Have a mantra that you can repeat when times get tough.
Being a caregiver for my mom has been one of the hardest things I have ever had to do. Dementia sucks, I hate it, but it has also taught me a lot. I have learned I do not always have control over my situation, but I do have complete control over how I chose to react. I choose to remind myself of what my mom always told me, ‘I am doing my best and it is MORE than enough!'”
This story was submitted to Love What Matters by Laura Orrantia from San Diego, CA. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
Read more touching stories like this here:
‘It is never enough. You can see the loneliness in his eyes when he hugs us goodbye.’: Daughter’s ‘gut wrenching’ nightmare makes her realize just how lonely her elderly father is after wife’s death to dementia
‘No, I’m serious. He shot me.’ My husband was lying completely alone on the ground. He dragged himself away from the door. There was nothing I could do. Absolutely nothing.’ Man shot by elderly man, urges people to keep an eye on older family members for signs of dementia
Do you know someone who could benefit from this story? Please SHARE on Facebook and Twitter.