Mom is 93, has stage 5-6 Alzheimer's dementia and lives in a memory care facility. I thought I had a clue as to the level of confusion dementia patients have as they progress through the stages. I assumed the confusion would be constant/continual. I guess I'm wrong.
We visited her last Saturday. I asked if she knew my name. Her reply, "Yes, you are Susan C..... (my name). And what relation to you am I? "You're my daughter". Both questions were answered quickly with the correct information. Barely 20 minutes later, she gets an old Christmas card out of her purse with my name on it. She tells me that "this person, Susan C...... is a horrible person that I knew in SF (where I was born) who forced me into "this place" (memory facility) and has always been mean to me and had stolen everything from me. I hate her." I played along, asking questions and telling her that if I ever saw her, I'd make the situation right. That seemed to pacify her and the discussion ended.
My confusion is; In Stage 6, how can she be lucid one minute and confused the next? What is happening in the brain to work one moment and not function the next. I felt so "spaced out" leaving there, as if I'd been in two dementions at the same time. It's unnerving. Has anyone else experienced this?
I am always amazed when my brother calls from Florida, Mom is almost herself. Mom's switch in emotions reminds me of when we were kids, we did something wrong, Mom was upset, screaming or was administering corporal punishment :), then the phone would ring. She would pick up the receiver and act like the sweetest person, like nothing was going on in the house. When Mom was chasing me around the house to swat me, I was praying the phone would ring. : P. One day, using my cell phone, I called the house, handed the home receiver to Mom and went out of the room...she knew who I was!
I often wondered how she could switch from one emotion to the next in a split second. She knows me on the phone but not standing in front of me.
Dementia is like a box of chocolates. . .
My mom is in memory care. Twice when I visited I didn't think she knew who I was. Last visit - she seemed to know me and asked if I was staying for dinner and spending the night - like how things were when I would visit her at home.
I know its heartbreaking.
Yes, caregiving can be a thankless occupation. Perhaps you can't feel grateful that your mother still is alive and available as an object of affection (whether appreciated/reciprocated or not). But at least you can give thanks for the opportunity to be of service to another person since that's basically the job.
Blessings to you and the entire family during these challenging times.
It took me awhile to learn to "play along" whenever he was in sundowning mode. I watched his caregiver respond to him and learned a lot from her as she knew the drill. The playing along did help with my stress. Dad never got into the mean spirited phase as he passed [98] before that happened.
With my Dad I was able to bring him into the here and now by asking him about the weather [his hobby]. Strange how the mind works, as Dad would give me up to the minute accurate weather reports for all around the nation.... where a few minutes ago he would say he was at a meeting at work [he retired 30 years ago] but he missed the bus [that would have been back in the 1940's] so he is going to stay here at the hotel [the Memory Center].
I know that it is tempting to ask a person with dementia if they remember a person or an event. I found myself asking my husband what he had done during the day and, of course, he didn't remember. He has dementia. I would never think of asking him if he knows who I am. Not because I don't want to embarrass or frustrate him but because I don't want to know if he remembers, or not, the woman who has been married to him for the past 20+ years. For me, that would be the beginning of the end.
The hardest thing for me to accept is that the symptoms of dementia come and go. One minute my husband is asking me about our dogs and the next he is telling me about the jet planes he had been inspecting that morning. Given my personality, and my nursing background, I just want to "fix things". This is one thing that, no matter how hard I try, I cannot fix.
Perhaps it would be more productive to say "Hi Mum, It's Jane. Uncle John has come with me for a visit." That way she may be able to understand that you are her daughter and John is her brother.
There are no easy answers to this type of dilemma. When I run out of things to say, I just hold his hand--then I go home and cry--not only for what has been lost but also for what might have been or, more to the point in my mind, what should have been.
so if possible schedule visits when she is at her best.
It might help if you think of the memories as a piece of paper that is rolled up some memories will touch another and the two will mesh and become one.
I also would not "quiz" her..don't ask her if she knows your name or who you are.
You can greet her ans say "Hi Mom it's Susan, Bob and I thought we would stop and visit for a while. We brought you some of your favorite cookies, you taught me to bake these when I was a little girl."
This way she might not feel stressed and anxious at trying to remember names and other details.
When she goes into the "horrible" person that put there there just say ...well I think it is wonderful that they are taking such great care of you. I love it that you are safe and I love it when I know where you are and that you are doing so well" Give her a kiss and a hug...
Then go onto another topic and she will soon forget the "horrible" person.
Just for clarification; I know what stage of dementia my mom is in (it's in my first sentence-Stage 5-6). I also know why she is like this-Alzheimer's. I AM loving her by visiting her, being patient with her continual questions, taking her on outings, shopping for supplies, bringing flowers, etc. What I didn't understand was the sudden changes from confusion to orientation and back to confusion.
Thanks Morcam, she has responded well to peanut butter cookies, her favorite. 😋
I asked my mother who I was so I could "play along". I want to be whoever she wants at that particular visit. No sense upsetting her.
I am terribly moved to think that my screen name conjures up images of needing praise and glory for what I do. Nothing could be further from the truth! Nursing and caregiving ARE thankless jobs. It's the nature of the care. That in NO way implies that I am sorry that I have chosen nursing as a profession or that I'm sorry to be my mother's c/g. I have been hit, kicked, spit on, grabbed, screamed at, had feces smeared on me, etc. by both my confused patients and mother, as I'm sure other nurses have. It comes with the territory and, at times, is part of the job. As you'll notice, I'm still doing both, because that's who I am. I couldn't think of doing anything else and will celebrate my 38th year as a nurse in January. I get great satisfaction from helping people. I don't HAVE to be thanked by anybody. But this is a job that, at times, is 100+% from the nurse (daughter) and 0% from the patient (parent). When that parent has not had a close relationship with you, it can make caregiving even more challenging. But I do it because I care for my mother, it's the right thing to do and it needs to be done. I can't help that she really didn't care for me throughout my life but I'm doing the best I can for her now. I am so bothered by the reference that having "Thankless job" as a screen name implies that it's just a chore for me, that I am changing my name. I will now be SueC1957, so there will be no confusion about my care and concern for my mother.
My sister asked him when he was coming to visit.She had not remembered him visiting her at all.There are days she knows my husband but can not remember his name.Other days she forgets my name.? Days & weeks are the same to an
Alzheimer patient ..It is harder on the care giver then on the person with dementia
I have my sister in a nursing home where I know that she is being taken care of.
She loves music , & bingo ( bingo is a hardship these days- but the activity aid helps her to find the number that is called .
I could never take care of my sister- she would be arguementive & tell me I am bossy.My sister is only 72 & has had Alzhiemers for 4 yrs.You can be young or old
And have Alzhiemers .
Take care,
Carol
A lot of times everything is good, but the 3 a.m. calls about Sue & Corey (my son) were there and left without saying goodbye are hard to deal with sometimes especially when i'm sound asleep when she calls.
Pargirl was referring to me. Someone on this thread insinuated that it was very sad that I felt that way about my mother. I certainly did NOT mean that, just that caregiving can be a thankless job (along with nursing, which I've done for 37 years). Doesn't mean I wanting or needing praise. It's just an expression. It got me so upset that I changed my screen name to Sue1957 (my nickname and birth year). Can't be confused with anything now.