Hi. First all the details:
My mother is a week shy of her 86th birthday. Her husband died almost 20 years ago and she lives on her own until a fall. She’s been living in my home (with my husband and teenage child) since she broke her hip/leg three years ago. She is generally mentally sharp (she’s highly educated) but has mobility issues due to the fall, spinal stenosis, and recurrent gout. She should be using a walker but refuses. She uses a cane but says she doesn’t really need it, so she “surfs” the furniture and walls in the house. Other health conditions: afib, high blood pressure, edema, and COPD (not due to any smoking and not on any oxygen). She also has depression (been on medication for over 20 years), ADHD, and has age related hearing loss (will only wear one hearing aid ONLY when she remembers or wants to impress her doctor). She has no real in person friends anymore. She reads all the time, is up on current events, does a lot of Facebook/internet surfing, and is a prolific artist. Her last hospital stay was extended by a 10 day stint of significant delirium. Oh, and she just had her driver’s license revoked until she completes and passes a three hour cognitive and mobility evaluation AND a DMV road test (I don’t anticipate her passing).
She is capable in daily living skills (dressing, bathing, etc). Cleaning is a whole other story, but she’s never been a tidy person.
So with all that info, I’d love to hear some advice on how to manage mild signs of impairment. She is always oriented to time and space except for when she’s in a “manic” mode and stays up late and sleeps all day the next day, but it doesn’t take much to orient her. This odd sleep schedule is not new. She’s been like this my whole life. Some weeks she’s more asleep than awake. Is it MCI, depression, just an escape from the chronic pain?
The story repetition is getting more exhausting. We hear the same stories all the time. Some are longterm memory stories (her childhood, stories about her children, etc.). Some are stories about things she’s read online. I could see how this might just be boredom and a lack of new experiences means fewer new stories. But OMG I’m so tired of the same stories. I’ve perfected the nod and smile response ;).
She also needs reminders about things we’ve talked about like schedules and appointments — she’s still getting used to having to coordinate her schedule with family, but she can’t seem to maintain the info. She will send me emails with the same information multiple times a week, or sometimes multiple times a day. I’ve started printing out the week’s schedule for her, but even that is hard for her to manage. Maybe it’s just her ADD. It’s hard to know.
I’ve read many posts here and I recognize how fortunate we still are at my house, but that doesn’t mean I/we aren’t having rotating feelings of exhaustion, resentment, regret, etc. as we peer into what this limited caregiving role will become in the days, weeks, months, and maybe years ahead.
Let me hear your words of wisdom. Let me know if I’m missing steps or signs.
Thanks for reading.
When we moved my father-in-law (FIL) into assisted living and switched him over to the facility's doctor, thank goodness my husband was there for the intake examination. My husband told the doctor about his dad's cognitive decline as my FIL's showtiming was very convincing. The doctor did a MMSE and was surprised by how poorly my FIL scored putting him in the moderate dementia category.
My FIL routinely cannot keep his schedule straight. Anything that is outside his normal day-to-day routine is repeated multiple times per day with questions and anxiety. So we've cut down on everything that takes him out of his daily routine unless it's absolutely necessary. It's just not worth the stress on him. He was a hot mess for the entire week before any appointment.
Your mother needs a lot of help. Whether or not she can afford in-home help with groceries, meal preparation, housekeeping, etc. is up to her POA to determine. Now is the time to figure out her monthly budget before a crisis happens. That budget can guide your family on decisions for your mother as to whether or not her needs can be met in her home. And remember that her dementia is only going to get worse and her needs are only going to increase.
The following was my experience with my mother as dementia broke her brain, long before any diagnosis. She was incredibly good at showtiming, But, in hindsight, hints were there. She was always difficult so I found it impossible to differentiate between manipulative behaviour and cognitive decline.
She began to decline opportunities to be with others, except me. Refused the seniors centre due to its “old people”. She was 90 herself. Seniors there are 55+.
She began coming to my house every weekday (husband working, kids at school) midday, to talk for anywhere from 30 minutes to 4 hours, about her in-laws (most long dead), and perceived personal slights. If I tried to redirect her, she grew very angry, saying that I was the only person with whom she could talk and it was rude of me to not want to listen. Oblivious to my need to clean, shop, bank, etc.
She began pretending to be hard of hearing, vehemently refusing a hearing test. That way she could deny having forgotten, saying she didn’t hear us tell her. Plus, that enabled her to have me answer questions she could no longer answer, like her address and date of birth. Her dementia is now advanced and her hearing is fine.
She began to write things down, over and over and over. (she didn’t use a computer) I think she was trying to make herself remember. I used to do that as a study tool to remember terminology.
She began incorporating things she’d watched on tv into her own life. She told the story as if she were involved.
She began using my sport walking sticks because only old people use canes. (leaving me to use a cane)
She’d switch day and night. Have days where she dozed much of the day. Be put out that I wasn’t cheery with her at 4am. But yell at me that my kitchen lights were on and I was baking at midnight (we were neighbours) when I should have been sleeping.
I made signs to prompt her and printed schedules. While she could recite some of what she’d read in the newspaper, she could not process how her schedule applied to her.
When she was finally assessed, long enough that she couldn’t showtime, she didn’t even know her town, year, grandkids, age... it was astounding how well she’d hidden her decline.
Frankly, I’m afraid you’re in for the same shock.
It’s normal to experience denial when faced with our loved ones’ cognitive decline. I’ll let others chime in but may comment further later when I have more time.
In the meantime, I send sympathy and understanding for what you’re going through.
But when other people re-tell stories it is super annoying.🙃 Sometimes I'm very rude about this with a particular family member, interrupting and finishing his story in a rush ("yeah yeah and then X; I remember") and denying him the pleasure of the full re-telling.
Maybe if we weren't all so stressed out and hurried all of the time these repeat narrations would seem less obtrusive. Or maybe people have found them irritating since the dawn of speech.😀
The matter of sending emails with the same info over and over on the same day, on the other hand, sounds genuinely worrying. I'm not sure how to square that with the keen engagement you describe in the first paragraph. Does this happen regularly? If not, maybe mom was just having an especially "off" day? For your and mom's sake I hope that is indeed the case.
No matter what the topic was he always went back to those two things.
He died when I was 60, by then I was brain dead on those topics, I just shook my head and went on.
Patience, Patience it is a learned skill!
'How is your son doing?" I would answer and 2-3 minutes later she would ask the same question but in a slightly different way.
"So, your son, he is doing well?"
Again a few minutes and then the same question, again asked a bit differently. This would go on until she had asked 5 or 6 times, the same question and finally someone would just say, "Mom, you already asked that." Then she would be quiet for a bit. This pattern would repeat itself with different topics. We knew that there was something wrong. It was very hard to get her to go to her PCP and get a referral to a neurologist. I found that in NY (near the capital not in the city) it was really hard to get an appointment for a neurologist. It took 3 months to see one and if you were 10 minutes late, they gave your appointment to someone else.
Look into this now if you think there is an issue. Believe me, you know her well, if you think she is slipping, she probably is.
Long story short, both of my parents are now in a nursing home. Next big hurdle. My mom has regressed quite a bit there and it's only been 2 months. They have both fallen numerous times. Two weeks ago she fell and fractured her femur. Hospital stay, surgery, now she is back at the nursing home. They called this morning, they both fell. I am waiting to see if the doctor thinks she needs an x-ray.
I'm not sure what you are planning next but I would try to get her to a neurologist. You can try calling the Alzheimers Association. They will often come out free of charge and do an evaluation. I did that. They found out that both my parents were confused and helped me get an appointment to see a neurologist. They are a great resource.
Finally if she does have dementia, watch for other signs. The wandering, the hallucinations, the anger. It was (and still is) hard to watch someone you know become someone you don't. I hate this.
Good luck, reach out to people and make sure you have a plan. You will not be able to keep her at home forever. Make sure you have a place that you feel comfortable placing her. Research senior communities near you and take her to see some. I had no choice, my dad fell and went into a nursing home for rehab (hospital picked the facility). My mom followed him in within a week because she could not live alone and did not want to live without him. It's really hard.
Good luck. I think you are wise to ask questions here. It's a good website and people are kind and full of knowledge.
It’s easier to handle if someone is doing this over the telephone because you can make an excuse and then hang up. In person, it’s challenging.
You can excuse yourself and say that you have to go to the bathroom to end another long winded story or say that you have to make an important phone call. Anything like that, have to cook dinner and so on.
Wishing you all the best.
Is she being treated for her HBP and COPD? Taking meds?
Why was her driver's license revoked? Did you do that or did the authorities?
Is she administering her anti-depressants herself or are you giving them to her? You should be the person handing her the meds and watching that she actually swallows them. Any and all meds she is prescribed.
Story and email repetition is a memory issue.
Everything you describe sounds like some form of dementia. She needs to be tested, also maybe a physical to discount other causes (like a UTI, thyroid issue, dehydration, vitamin deficiency, over- or under-medicating of prescription meds, HBP, diabetes, stroke, tumor, etc.)
First, get an accurate diagnosis. Then you can attempt to help and manage things. Are you her DPoA? If not, is anyone? Her assigning a PoA should be the #1 condition of you caring for her (in your home or elsewhere).
The durable POA has been in place for a while as long as other legal needs (DNR, access to financials, access to medical information, etc). I have siblings but they live thousands of miles away so I made sure this was all in place.
She is seen by her team of doctors regularly and is medicated for her conditions (BP, COPD, aFib, etc).
My mother has NOT had a cognitive evaluation yet other than the in clinic MOCA assessment, which she passes easily. She has never been medicated for her ADHD (her choice).
Her license was, ironically, revoked by the state a week after my siblings and I were discussing how we might start addressing her driving. Turns out she had an accident and a moving violation (two separate events) that she did not tell me about. Her intention is to pass all the tests and get her license back. I do not believe she will pass those tests. I am hoping to use that process as a stepping stone to getting her formally evaluated.
In the beginning of dementia, only family will notice the memory loss, the mental decline generally…A doctor will only diagnose dementia when it’s VERY obvious (in other words, more advanced dementia).
OP:
Your mom is starting to have dementia. End of story.
See All Answers