In June of 2003, I sat on a ship in the port of Seattle and made a phone call that would be a crossroads in my life. I was checking in with my folks before going off grid and my dad gave me the really difficult news that he had been diagnosed with lung cancer.
What followed were several trips west over the next 12 months from our home near Philadelphia. The frequent trips were to check on my parents, until the last one that kept me there for several months taking care of dad as he came to the end of his life.
It was with him that I first experienced the ravages of dementia. His was the result of his cancer metastasizing.
I had no idea that it was merely the beginning of a very long journey.
Our last family picture
Dad, shortly before his death
During that time of being dads caretaker, I spent a lot of time with my mom, and began the transition into being her caretaker as well. I just didn't know it was happening.
Mom's dementia was harder to recognize than dads. His was expected because of his disease, and quite frankly, he did and said some funny things. One of the best laughs I had during that time was when he told a doctors waiting room full of people that he was a "solar powered sex machine". The cancer treatment had stolen his hair and the dementia had stolen his inhibitions but neither had stolen his sense of humor.
But because moms style was always "ready, fire, aim" it was hard to know what was really "not right" and what was "just mom". Erratic behavior was kind of her MO, but one of the many things she told me as I took care of dad was that she would never be as easy a patient as he was. It was a prophetic statement.
After a few years alone in the house my folks had once shared, and with more trips west for me to shore her up, it became evident that mom could no longer live alone and I could no longer be expected to keep her going while living thousands of miles away with my own family. Yes, I had two beautiful children and an amazing husband that made up my life.
So the decision was made by my brothers and myself to move her near me. It just made sense and the Lord opened the door for her to be able to afford it. My brothers and I were in agreement, and as time passed, we quickly saw the wisdom in it.
Shortly after the big move
She was able to enjoy living independently for a time after moving here, but it wasn't without significant time on my part to keep her going. Cleaning her place, doing her laundry, changing her bedding, doing her hair, doctors visits, the trauma of getting her to the dentist, managing her medication, cleaning up messes created by bowel incontinence, and the frequent reminders that she needed to bathe.
She often jokingly said it was like I had another child. To which I would respond "No it's not. Because my children obey." She found that hilariously funny.
There was also the anger. She had always been a very angry person, but it went to a whole new level as she deteriorated. She made frequent erratic claims of people stealing her things, paranoia because people were talking about her, and even accusations leveled at me for various imagined offenses, angry late night phone calls complete with screaming and hang ups...
And she was so afraid. Fear was a constant companion through her life, but now she knew something wasn't right with her. She had no control over what was happening in her head and her fear just compounded the anger she felt.
In actuality, no one stole anything. She squirreled things away because she was afraid they would, and by God's grace, I quickly learned her hiding places and was able to restore her things to her until "someone stole them" again. Her neighbors were so very kind and were the reason she was able to stay in independent living as long as she did. As much as I was with her, there were still things I didn't know because they were all so good at covering for each other.
I had gone down a hole that I didn't even realize existed.
When the time came to move her into assisted living, I really believed it would get easier, and some of the tasks were lifted from my shoulders, but some were not. In addition to her own late night calls, I began receiving them from the kind and caring nursing staff informing me about one thing or another.
I have so appreciated the care she's been given, but have to tell you, I get very tense when the phone tells me it's a call from the "Raisin Ranch". (a term coined by my funny big brother) She falls often, and is at times very combative with staff.
She began experiencing "sundowners" shortly after moving into assisted living, and would often pace the halls at all hours of the night. Those times always brought a call from the staff and I often made the trip to try and calm her down. That was never successful because I wasn't the one she wanted to see, and she just wanted to "go home". In her mind, I was the reason she couldn't.
I quickly learned there is no reasoning with a person suffering from dementia. Distraction is your best ally.
Little brother teaches mom the finer points of taking "selfies"
I made several trips to the ER with her, most often late at night. Those were especially difficult because her default to worry became exponentially amplified as she aged and that stress brought on the incontinence that is so much more difficult to deal with in a public place, but I had a lot of practice. The ER runs also had to happen when I was out of town, so I learned how to manage those long distance.
My parents changed me, fed me, and kept me clean as a child, and dads illness called for me to do the same for him. After his death, the task of doing so for my mom also fell to me. I've cleaned up messes that I would have insisted I couldn't bear to deal with, but you do what has to be done.
Mom and dad were born the same year, and he died entirely too soon at 75 years old. After moving here and spending 2 years in independent living, and 7 years in assisted living, mom was registered for hospice care 2 years ago. She is now 91.
I just recently realized that my journey down dementia drive started in 2003. That's a long time, but when you're in the midst of "it" you just lose track of how much time is passing.
While mentally mom is gradually fading away, relatively speaking, she's in good shape physically for her age and state. While she spends most of her time in a wheel chair, she's still mobile with a walker for short distances.
She hasn't known me for quite some time and seems to think I'm just another one of her caregivers. As long as she's in her familiar space, she's fine with me being there, but COVID-19 has made that impossible. Now visits have to take place in a beautiful outdoor area that is completely unfamiliar to her. She must wear a mask and so do I, and the fear of being left in this unknown place with me causes a fear in her that results in completely shutting down. She's still chatty and relatively responsive in her own room, but during a visit with me in this outdoor space, there is no speech, no response... nothing.
So until I can once again visit with her in her own space, I won't see her physically. Her own feelings of safety and security are more important and that's stolen from her when I try to see her right now.
The setting is lovely, but too stressful for her
This time only reinforces the importance of making sure your loved ones are well taken care of in your absence. In addition to the nursing staff in her community, mom also sees a nurse practitioner and her hospice nurse on a weekly basis. For now they are my sweet and faithful eyes and ears and they sing the praises of moms assisted living home.
Bottom line? Dealing with dementia is a dirty, hard business, both for those experiencing it themselves, and for their caretakers. Everyday brings a new issue that you can't possibly prepare for because the disease has a mind of its own.
Dementia results from physiological changes to the brain. Simply stated, there are physical gaps in the brain tissue that result in mental gaps in those who have it. My mom tells very believable fantastic stories because she's just trying to fill the holes in her memory. They aren't lies, but an attempt to bridge gaps that make no sense.
My goal in even writing this is two fold. First to process what I've been doing for the last 17 years of my life. I can't believe I've been on this journey for such a long time, nor would I have believed you if you had told me what would be expected of me when I took that first step with my dad.
But more than that it's to help others who might stumble upon this accounting and find help and encouragement here. You're not alone, my friends. The community to which you belong is a big one. You're often asked how your loved one is, which is such a hard question to answer. The whole truth is just too hard to vocalize, so you just say "relatively, she's doing well". We all know it's not the truth at all, but to tell the truth is just too hard. It's too big.
Rarely are you asked how YOU are. But those of us on this journey understand. We know how you are, because we know what is expected of you and we're right there with you.
Nothing could have prepared you for what you're experiencing right now. But the God Who created you laid this path before you because He knew it's what you needed. His intent is for us to honor others and that looks different in every family.
Honoring someone is in part, providing the support they need when and in the way they need it. It includes doing hard things. Sometimes feeding them like babies, changing diapers, and cleaning up messes you didn't think you could ever deal with. Yet God gives you the grace when the time comes. Sometimes it's handling their finances like my sweet husband does for my mom. But for you, right now, honoring your loved ones, whether they are parents or others, is doing exactly what you're doing, and doing it excellently.
Watching over those that can't watch over themselves. Doing the hard things that they can't do for themselves. That, my friends, is a noble calling.
Don't be discouraged. You're doing a good thing.
And so my journey continues. It's a bit different everyday, yet stays very much the same. I don't know what my future holds, but my God does. And He never fails.
