Dementia Support Group
Dementia is the progressive decline in cognitive function due to damage or disease in the brain beyond what might be expected from normal aging. Particularly affected areas may be memory, attention, language and problem solving, although particularly in the later stages of the condition, affected persons may be disoriented in time, place and person (not knowing who they...
In cleaning out Mom's house, found tons of notes on scraps of paper, clipped together, scattered in a large basket, hidden under a tray. I share some of these with you because I think it gives a peek into the slipping and losing of "control" of our thoughts and routine that most of us take for granted. Perhaps you see this every day as you are the primary caregiver. But to me, even as I saw this, I couldn't see it from my mother's point of view.
Here is her perspective:
"I'm writing this a little past midnite on Wed. When you awaken it will be Thurs early morning whether it is lite or dark. Go bathroom. put on lites & put on glasses. (P & P). Put on sneakers with clean sox, then jacket (fall) with keys in pocket and open patio door to check weather. Remove coat. Go shower & don't wash hair. Brush teeth wt toothpaste. Go eat cereal & coffee."
(P & P = I think means "pee & poop")
"Remember, even tho it is dark outside, it is Tues 11/22 AM. (I am writing this on Mon. 11/21 nite). First, (use bathrm) put on glasses, 2nd put on lives, 3rd put shoes & sox on, 4th put on jacket, with keys in pocket, 5th Go to patio doors and open to check the weather. Then close door & lock it, making sure bar is also down. Then go to closet hang up jacket, take pills from M.bath & Kitchen, then rinse mouth, brush teeth (no toothpaste). Go back to hall and open door (between 7 am & 11 am), Go to kitchen, make cereal & coffee in micro. Put laundry in washer. *Remember to shower, p & p & dress before going to kitchen and opening hall door between 7am & 11 am. Also remember Laura is coming at 10:30am to 12 noon. Put Amy's supplies on kitchen table. *Amy is coming at 3 or so."
(opening hall door between 7 - 11 am unhinges a metal flag that the Security Guards put into place; this way, if the flag is "down" -- they don't need to check the residence to ensure safety-- as the door has already been opened that day by the resident.)
"Remember List- This day Wed 14th started and ended as Wed. the 14th @ past 8 am. Mary was here and Ellen now has taken her place. I did a bad thing and ended by throwing it away. I will tell Ellen all my secrets. Put your Spring coat on with the keys in their proper place. Do the usual routine - breakfast when you get up. There is construction outside making noise. Ask Ellen to help with picking up your clothes. The pill lady comes today. I don't want to be disturbed. Thanks P.S. I ate my cereal and water."
"Remember - When I go to bed it is at the end of Monday @ 12:18am in the morning, When I awakened tom it will be later in the am. Mary has been on since 7 the evening before. Rachel returns @ 7am today. Remember to check weather - keys in pocket etc. Make some calls."
...There are stacks of these notes, of the same routine day in & out...
((Hugs to You All))
Here is her perspective:
"I'm writing this a little past midnite on Wed. When you awaken it will be Thurs early morning whether it is lite or dark. Go bathroom. put on lites & put on glasses. (P & P). Put on sneakers with clean sox, then jacket (fall) with keys in pocket and open patio door to check weather. Remove coat. Go shower & don't wash hair. Brush teeth wt toothpaste. Go eat cereal & coffee."
(P & P = I think means "pee & poop")
"Remember, even tho it is dark outside, it is Tues 11/22 AM. (I am writing this on Mon. 11/21 nite). First, (use bathrm) put on glasses, 2nd put on lives, 3rd put shoes & sox on, 4th put on jacket, with keys in pocket, 5th Go to patio doors and open to check the weather. Then close door & lock it, making sure bar is also down. Then go to closet hang up jacket, take pills from M.bath & Kitchen, then rinse mouth, brush teeth (no toothpaste). Go back to hall and open door (between 7 am & 11 am), Go to kitchen, make cereal & coffee in micro. Put laundry in washer. *Remember to shower, p & p & dress before going to kitchen and opening hall door between 7am & 11 am. Also remember Laura is coming at 10:30am to 12 noon. Put Amy's supplies on kitchen table. *Amy is coming at 3 or so."
(opening hall door between 7 - 11 am unhinges a metal flag that the Security Guards put into place; this way, if the flag is "down" -- they don't need to check the residence to ensure safety-- as the door has already been opened that day by the resident.)
"Remember List- This day Wed 14th started and ended as Wed. the 14th @ past 8 am. Mary was here and Ellen now has taken her place. I did a bad thing and ended by throwing it away. I will tell Ellen all my secrets. Put your Spring coat on with the keys in their proper place. Do the usual routine - breakfast when you get up. There is construction outside making noise. Ask Ellen to help with picking up your clothes. The pill lady comes today. I don't want to be disturbed. Thanks P.S. I ate my cereal and water."
"Remember - When I go to bed it is at the end of Monday @ 12:18am in the morning, When I awakened tom it will be later in the am. Mary has been on since 7 the evening before. Rachel returns @ 7am today. Remember to check weather - keys in pocket etc. Make some calls."
...There are stacks of these notes, of the same routine day in & out...
((Hugs to You All))
This sounds like my mom when she was still living at home (now in a nursing home). She has Parkinson's Plus, macular degeneration, and is hard of hearing. She had primary care of my brother (severe Down Syndrome) for many years. Luckily, my oldest brother cut his hours at work after dad died, so mom had more help, but was very reluctant to have any outside caregivers.
Slowly, mom began to have balance problems, including falls; she also had more difficulties with her sight. Then she started leaving many notes on small scraps of paper, envelopes, etc. everywhere in the house. She also had several fender benders and she always said it was someone else's fault.
Eventually, for her and my brother's safety (as well as other motorists), we had to take the keys and sell her car. It was horrible telling her, but her eye doctor was helpful when her primary care doc was not. She also started making angry phone calls to all of my siblings and I, complaining about my oldest brother (he's my idea of a saint) and threatening to call the police about various imagined slights.
So, she's been in a nursing home for the last few years. My husband was diagnosed with frontotemporal dementia last year, and it's sometimes scary thinking of the future. Your story about your mom shows that the ill person's perspective can be difficult to appreciate when we're just trying to get through the day ourselves. It must be terrifying to have to write every little thing down in order to make some amount of sense out of the day. Thanks for posting.
I had been explaining to my friend that last year at Thanksgiving time, when we were going to visit with my mother, that she's not been well (this was before the diagnosis). He didn't notice much of a difference. I said she had an unusually good day. Perhaps because of his visit. Because Mom suffers from mental illness (depression, anxiety) it is easy to explain a lot of her symptoms on this.
I found among those notes one for that day that my friend & I visited Mom last November. Seems like that's when this "stockpile" of notes began... Like the one's I wrote above. Seems she was writing notes as a way to orient herself and try to maintain focus. So sad...
Yeah, njmom: my mother started having fender benders too. In the years past, it was explained away by her mental illness. It was also explained away until we realized how sick she was (December 2011).
I am using Mom's car now to run her errands & to visit her (I do not have a car at the moment). She always asks if I'm taking care of her car. Until recently she was convinced she was going to take a driving test and get her car back. She is now eluding to selling it since she's aware that she is not driving it. Mom has lucid days and not so good days (when she calls the police or says she wants to go home).
So sorry to hear about your husband's illness. I'm hoping that things are going okay for you.
((Hugs))
These days I worry about my mother. At 81 and now alone she is getting very confused. Not sure if it is formal dementia or just age and not having dad there. Probably some of both.
But I can also relate to your mother's notes. I've been dealing with chronic pain and the medications to try to control it. They reek havoc on your body and your mind. But they leave you knowing that your brain is not doing what it should be doing. A very scary situation.
Hang in there!
Now she's in a home and still freaked out but safe.
I have until June 30th to empty her apartment. What a nightmare.
I called 1-800 got junk. They said they had a 2 ton truck. I never in my wildest dreams though we would fill it. We did. I sitll have all her notes to deal with, at least 4 boxes full. I will read and shred.