The down and the other kind of down days

People tell you to be sure to take time for you when you are in any way caring for a loved one with dementia. I think I have plenty time away with work and play. I know there are people who put in much more time with their loved ones and I want to say out loud those are heroes and angels who walk among us because it is hard.

I vacillate between down moments of frustration and downs of sadness. The 5th time a story is repeated like it is brand new in 30 minutes. Then the confusion on her face when she’s not sure where something is or needs help. It goes from head shaking to tearing up hourly.

This morning my mother came into my room about an hour and a half before my alarm was going to go off, startling me with the creaking of the door and the purposeful look on her face as she came around the bed. I sat up and asked if she was ok or what did she need. She said she was looking for something but wouldn’t tell me what it was. Then I got up and followed her around the house asking what she was looking for and she finally said “my stand up lamp”.

My mother hasn’t had a stand up floor lamp since my parents moved into this house over 13 years ago. I had to check with my brothers if they remembered a floor lamp and then they did from the house before this one. She was on a mission this morning. She said maybe she gave it away to my brothers. Maybe she had given to her sisters. None of that happened.

We have the continual issues with the house phones and thank goodness new ones installed last week. The appointment is on her calendar where I or she writes everything down. The install cannot come soon enough because repeatedly she tries to dial out or check the voicemail and it is not working. Frustrating for me as it is but I know this and don’t keep trying. She doesn’t remember it doesn’t work and keeps telling me something is wrong with them.

Tonight she came into my room, panicked. “I can’t find my ring!” She was so upset. She couldn’t find a ring that she had a jeweler make after my dad died that had the diamonds from Rotary pins and other other items he had. Understandably she was upset. I was upset for her and I hoped I could find it or she would. I was pretty sure she had it on earlier in the evening. I looked in a couple of places and then I found it. In the jewelry box, linked in with her earrings she had taken off probably just moments before she then panicked about their whereabouts. She was out in her car looking when I brought it to her linked with the earrings.

The relief on her face made me want to cry.

This is what everyday looks like when someone you love has dementia. Frustration not with her but with what it has done to her, what it is taking away from her and us. Leaving her with panic and confusion. My mother had details. She was the keeper of the trivia related to family and friends. Now she couldn’t remember where a ring was that she had put where it belongs and always is when she takes it off at the end of the day.

I didn’t think this would be our life. I didn’t think my mother’s later years would be ones where she wouldn’t know things she always knew anymore. I guess no one thinks this will be how it goes right? Although her older sister has more advanced dementia. And her younger sister has memory issues too now. Then there is her younger brother who has that along with other health problems. Even with all that, I wouldn’t have thought my mother.

Dementia is an equal opportunity offender.

There might be a chance Mother can have a place sooner in the facility we are planning the move. The brother who doesn’t live here asked my other brother and I if we were convinced that moving her in September possibly is the right move. I had to pause because I HATE the idea of taking her some place else. But at the end of the day and especially at the end of the days that are like this I know that my local living brother and I cannot stay with her enough, cannot oversee her needs enough.

I want her to have activities, social opportunities, to spend time with her sister and brother in law already there at the assisted living center. Regular meals and with staff that can make sure she is taking medications and check her blood pressure. Most importantly keep her safe.

I have tried to be a good daughter, caregiver and helper. Even on the days that I feel I fall short in all of those areas I know I have tried and I know that I love my mother and I know that she knows I loves me too.

And loving each other is all that matters at the end of any day.