I started this week's blog with a totally different picture and a totally different topic. But I couldn't get through that one and had to set it aside. It just didn't feel right and I couldn't wrap my head around it.
I chose this picture instead. This is hard to write about. I feel very vulnerable sharing this with total strangers. But I know I'm not alone on this journey that none of us wanted to take.
Because my parents had me "later in life" (my Mom was 39 and my Dad was 43 when I was born) - and since I live so far away from them (about 1500 miles) - I always tried to get a picture with them when I would visit. Even though I would never say it out loud, I was always afraid it could be the last picture together. This one turned out to be it. It's an older one - taken in July of 2016. Back when my parents lived in their own apartment. Back when my daughter still had long hair. Back when we still had my Mom and Dad. My Dad passed away in one year later. While my Mom is still living - I feel like we lost her the same month we lost my Dad.
You see, my Mom has suffered from dementia for many years. Probably more than 13 years. At first you don't notice the signs. We all repeat ourselves from time to time - so you don't really notice when you're told the same thing more than once. And we all misplace things, so it doesn't seem abnormal when something can't be found. But then you're told or asked the same thing multiple times, or things are lost that they never realized they even had, and a light bulb goes off and you start to realize something is wrong.
My Mom denied it for many years. She had watched her sister-in-law go through many, many years of going downhill with Alzheimers disease. I think my Mom thought she could wish it away. She blamed us - thinking we were all "after her", when all we really wanted was a diagnoses so she and my Dad could start finding help, so we all could start finding help - whether it be support groups, drug trials, or in home care. We just wanted it to be better - as better as you can get with such a diagnosis.
In fact she denied it right up until she no longer understood we saw a problem. My Dad was her anchor. I think he kept her tethered to reality - as ever slight it was. Sometimes he would get frustrated. I think he thought he could keep her mind sharp by challenging her. In fact, he told me as much. And it does get frustrating. Even when you know dementia is not a choice.. It's like having a toddler who keeps asking the same thing over and over again. But unlike a toddler, a loved one with dementia will never learn, they won't start to understand. In fact, they will only get worse.
As frustrating as it can be - there are comical moments. Like when my Mom accused my sister of taking all my parents' towels and leaving them with old ratty ones. (OK that was probably more comical for me than for my sister). Or when she thought someone had stolen her mattress and replaced it with an old one. Even my Dad enjoyed some laughter in the midst of the sadness and frustration of watching a spouse decline. I remember one afternoon my parents and I were sitting in the open garage watching the cars go by, a favorite activity of theirs. One thing about my Mom is that she has always been active - always busy; shopping, volunteering, cooking, etc. I noticed as her disease progressed that she seemed unable to sit still for long, probably a magnification of her proclivity for activity. She also enjoyed a glass of wine in the afternoon. Well, this afternoon she couldn't stay seated for very long -going in and out of the house carrying her glass of wine for various mystery reasons. One of the times she went in, my Dad, with a twinkle in his eye, said "go move your Mom's glass of wine so she can't find it". He wasn't trying to keep her from drinking it, he was just trying to pull a prank on her. She came back out before I got the chance, but Dad and I chuckled a lot at the thought of the would-be-prank.
A few short weeks later, my Dad was in the hospital. His kidneys were failing. His potassium levels were through the roof (which can cause your heart to just stop). His heart was failing. And my Mom was starting to fail with him. She didn't choose to lose her grip on reality. But the truth of the matter is she did. My Mom and Dad got married at 17 and 21 years of age. They had celebrated their 70th anniversary 7 months earlier. I feel like my Mom and Dad's spirits and souls are entwined. And so as one went down hill, they both did.
While in the hospital, my Dad decided it was time for him to be done. He was tired. He didn't have any fight left. And so he went home on hospice. By then, my Mom was already in her own world. They spent the next 4 days in the same house, but my Mom's mind was somewhere else. She didn't seem to understand that my Dad's body was failing. My Dad was mentally sharp until the moment he passed. My Mom ended up going into the hospital the day before my Dad passed.
She never came back home. She went from the hospital (for a broken back - the result of a fall and severe osteoporosis) to a rehab facility, to a nursing home. She hasn't stood in over 2 years. And her mind has slipped more and more into the fog. The only good thing about this illness they call dementia is that she doesn't realize my Dad has passed away. She still thinks he's just in the other room. She thinks the flowers my sister brings her several times a month are from him. In her mind she still goes out to lunch and shopping with friends. Her long-ago memories for her happened just this week. I'm glad she still has those happy memories. But while she has those memories, she knows us less and less. Her wiring is slowly wearing out. She can't remember how to do things, like eat. Or what's appropriate to eat. Potato chips end up in cups of soda, carrots in coffee. Her appetite is gone. She is slowly wasting away.
I still live a long ways away. Phone calls are next to impossible - I feel like it is too confusing for her not recognizing a voice and not knowing who she is talking to or what they are talking about. Conversation is a broken road that goes nowhere and everywhere. When I do visit, it's asking for a miracle for her to remember me. Sometimes she can get my name. Most of the time I'm a stranger to her. And although the day is coming soon when we will lose her body - I feel like I really lost her back in 2017. I will someday say goodbye to her physically. But I said goodbye to her mentally a long time ago. I don't know my mother anymore and she doesn't know me.