The Longest Day: My mom is awake
Our second blog for The Longest Day comes from Lori, a long-time volunteer and fundraiser with the Alzheimer’s Association. Lori’s mother has Alzheimer’s disease.
My mother Shirley Preuitt is at the end stages of Alzheimer’s disease after being diagnosed about eight years ago. She moved into a nursing home at the beginning of the year. She now spends her days sleeping, rarely says anything other than a one word response to a question, and only some times recognizes her own daughters.
I am with her this summer because I am taking family leave from work. Most days I sit next to her in silence, not at all sure she knows I am there. That all changed one day earlier this month. That’s when I experienced my first “alert” day with my mother. About twice a year, for no apparent reason, a normally silent, unaware woman wakes up and talks and talks and talks.
I had heard that these alert days were both taxing and stressful, but, for me, this day – although long – was nothing short of a miracle. Mom instantly recognized me when I arrived. We spent the next 13 hours chatting away. Part of the time, she not only knew I was her daughter, but that I was her daughter Lori. During other times of the day/night I was new to her, but it was during those times that she became very interested in getting to know everything about me. “How tall are you?” “Where did you go to high school?” “What does your husband do for a living?” were asked at least a dozen times.
I think I figured out, in her mind she was herself at about age 40 before I was born. It was so good to hear her talk about her happy life. Just hearing her voice was amazing. On a normal day, you can count all her words on your fingers and toes, but on this day they spilled out.
As it got later and later, I found myself thinking I should do something to make her go to sleep. All my sisters had left and I was there waiting for “the crash” when she basically collapses from exhaustion and sleeps for the next 24 hours. But then I caught myself. I thought these late minutes were like having box seats at the World Series. It was Game 7 and my team was winning. Why put her to sleep?! Enjoy it!
I stayed and we continued to talk, and I felt in no hurry to leave. When I finally said good night she said she was so glad we had met. She noted how we were the same in so many ways. She liked me! I have no idea if I will ever get to spend moments like that with my Mom again.
For the scientists and entrepreneurs out there, we have not been able to figure out what causes her brain to occasionally fire up. We’d bottle it if we could.
What a lovely story! Treasure every one of these moments as they occur. God bless you and your family, Lori.
Lori what a beautiful story….thank you for sharing. My last 3 hospice patients had Alzheimers, so I know the struggles each family goes through. Your window of “fire up” was timely…I’m so glad you got that!!!!
Warm regards…
Kat Terry, Kansas City
My mom is 77 and has dementia and is also a 4 year stroke survivor. I am her caregiver. She has several alert days out of a month and I am very thankful for that. The brain really amazes me. She will talk and talk for hours on those days.
My mom is 86. I am her caregiver. I know very well the “alert days” you are talking about, she still has them, but nowadays they consist of long stretches of manic delirium followed by silence. On those alert days I used to be able to talk to her about the old days. Now her long term memory is gone also. GOD bless you Lori……………..and all caregivers.
Regards
Hi my mum has recently gone into a care home she is now sleeping for very long periods of time, but its not like a normal sleep she is so deeply asleep she can hardly be roused I am very concerned about this, care home tell me this is part of dementia but I am worried> My mum does not have dementia so bad we have normal conversations usually she just talks about the past a lot and thinks my dads alive.
I cannot understand why she is in such a deep sleep or is this a normal progression
Julie
Julie, how is you Mum doing now? Did the deep sleep start soon after her entry to the nursing home? If so were there changes to her medications?
Was the move stressful to her and/ or is the new environment busy or her routine different than at home . Sleeping more often is a part of the progress although the heavy sleep usually comes at a later stage.
I am so overwhelmed to hear from people who face my kind of challenges emanating from this cruel and weird disease. I am the only child as it stands now a widow and the caregiver. I am happy to see my mother through to life but weighs me down as the help I normally employ do not stay . It is having effect on health but with people’s experiences I have taken it with ease and I pray God to give me what it takes to see her through to the end. love you all caregivers out there.
This is very good for our elders beacuse as you mature in age life becomes boring and so like lifeless therefore it very good for them to still have life at their prime having themselves examine before facing their creator.