My (37F) mother (77F) has been having worsening memory issues for a couple years now. Last year a neurocognitive assessment revealed she has frontal lobe dysfunction. Her memory issues have only worsened since.
She would say she's fine and the doctor said nothing's wrong with her (incorrect). Lately she'll randomly say the doctor told her she has Alzheimer's (also incorrect) and she'll tell anyone who she wants sympathy from. However, she won't actually seek help. She won't express this concern to her doctor. She won't follow up with other doctors. Her mind and body are just... rotting away.
I expressed my concerns to her primary care doctor several times. His assessment of her was merely asking her if she's paying her bills on time ("yes!"- but she's not) and how her memory is ("fine!"- but it's bad).
Do I just let it lie until something catastrophic happens? Is that my only option? How can we be proactive when my mother won't admit she is having memory issues and confusion when it really matters?
Anasognosia is very commonn with dementia. A doctor that isn't familiar with it isn't worth seeing, IMO. Give a list of behaviors/concerns to doc before appt. Film any erratic behavior to show doc.Ask for a MoCA or SLUMS eval.
Hand deliver a letter to her doctor before her appointment detailing all you’ve seen and ask for a dementia test. Try to be there with her. The care for me really started with the diagnosis that she couldn’t deny.
This is such helpful advice.
With my Dad, I went with him to the appointment and had him sit in the waiting area while I checked him in. I told the receptionist that I needed to speak to the doctor privately about some concerns. While the nurse was taking his vitals the doctor was able to meet with me outside the room where I told him all my concerns.
You may also be able to relay your concerns to the doc via telephone. And definitely go to the appointment with her.
As a doctor, patient with early dementia can seem very reasonable when they come in. If a family has concerns, we’ll do either the mini metal status exam or a.MoCA (try he one DT talks about all the time). You could ask the provider tow do a cognitive test.
You’re also right about having to fail. Many times patients will want to continue what they’re doing. Are you living at home, by themselves, driving and since they’re not declared incompetent, they can still do this despite our best efforts. As things progress eventually, this becomes impossible.
As others have said getting a our attorney is very important as well as spelling out but life prolonged measures. They may want while they’re still cognizant enough to make that decision.
My mother is currently in the hospital. She told them I made her go to the hospital because she wouldn’t (couldn’t) get up off the couch. lol
They found all kinds of stuff going on - congestive heart failure, UTI, fluid in her lungs, bed sores (sitting sores), and failing kidneys. Yesterday they took over 1,780 ccs of fluids from her lungs and with lasix, drained another gallon of urine over the next 36 hours.
She’s 93 and back in October, could not walk. We had to transport her to the ER where they found she had a fractured pelvis and fluid in her lungs. The took out about 650ccs and discharged her to rehab (who did no rehab) so when she came home after three weeks of sitting in a wheelchair and doing nothing, she couldn’t remember how to give herself insulin or check her blood sugars(after doing so for 30+ years).
But I called the ambulance because I was mad she couldn’t get up off the couch.
I’m sorry you are going through this. I was in your place last year - the book The 36-Hour Day has been a huge help! It’s written for family members and is a real eye-opener.
Reading about anosognosia (where they lack the capacity to understand they have dementia or any decline) was a real lightbulb moment and was a turning point in my caregiving. We now write letters to doctors and secretly give them to the receptionist or nurse. It’s been a very effective way to advocate for our LO.
Anosognosia is a huge impediment to diagnosis, treatment, caregiving, estate planning, fraud prevention, and their safety and wellness (driving, accidents, etc.) The book and this sub taught me you can’t go toe-to-toe with dementia - you have to get crafty.
Sending you hugs ❤️
Thank you for the book recommendation! It is the most helpful resource aside from this sub and all of your comments.
I was so disheartened that my letter to the doctor pre-appointment wasn't taken seriously and was merely followed up on by asking an unreliable narrator. I guess advocating for our LO is a long and complicated road!
I just went in with my husband to the exam rooms. He was suprised but went along with this new thing. When he would say he’s doing fine to the Drs question, i would be nodding my head no behind his back. If the Dr asked are you getting lost while driving and husband said no, I would ask husband “didn’t you tell me you got lost comeing home the other day” etc. I would often re-answer the Drs question by asking my husband what really happened, as if it was another question. I also set up the portal for my husband as he couldn’t do it, and just emailed info to the dr. in the portal. I have medical POA/advance directive, so I was already signed as agent for healthcare questions. I also had him sign the HIPPA form that I could have access to his health records. When he balked, I said "well who else do you want if not me, you gotta have at least one"!
Until there is a cure for dementia, then the goal really can only be prioritising her comfort and dignity as much as possible. The anosognosia means that she is unlikely to truly ever connect with the diagnosis - sometimes there are exceptions to this but they're not as common. While the disease ticks on in the background, she still has her life to live, even if that looks different from before.
As her daughter, the most important thing you can do is to protect your peace first. You cannot pour from an empty cup so you must prioritise yourself as hard as that is. If you don't, you will both end up suffering when you didn't have to.
The next best thing you can do is make sure you have power of attorney for when the time comes that she is truly not independent anymore. Take her to get her hearing checked if she's willing, hearing aids can slow progression somewhat if it's caught in time.
It is definitely time, as mentioned, to email her doctor and caregivers with your observations. Contact your local dementia organisation for help and advice as well, they can be wonderful.
Also consider getting her a dementia clock to keep her oriented, and if she's not sleeping, melatonin can be really good as it's also a neuroantioxidant.
But I cannot express this enough - protect your own peace first.
First - are POAs in place for when the time comes? Get your name in her checking account with her, so you can step in more easily when the time comes. Then mail copies of the overdue bills and specific things that are off (if possible) with a letter to her doctor.
Then, it will still probably take an accident or incident to get things in motion.
We finally, FINALLY took care of PoA, with many months of hesitation and resistance prior to acceptance. I guess I'm glad to have that safety net in place while we wait out catastrophe? Sigh. I feel so helpless just waiting for the worst. I thank you for your supportive comment!
I wrote a note to the doctor more than once. I always hated talking about mom like she wasn't there, so unless I was asked a question directly, I let her answer. But I wanted the doctor to know what was really going on, not what mom managed to convey, or not.
I wasn't satisfied with her PC doctor, so I set her up with another. We only saw her twice before she went on hospice but it was a huge improvement, we got the meds she was on reduced probably by half.
I hope you have PoA and are PoD on her bank accounts. Ask her about setting up one account for bills and another for play money and you transfer the money from bills to fun account (2 different banks/credit unions is best).
When she goes to the hospital for anything that is the time to tell the hospital doctor and social worker that it is unsafe for her to go home. Check your state laws for filial responsibility and consult with an Elder Atty. Her car needs disabled (switch out the keys for look alikes, disconnect the battery, whatever it takes) better sooner than later. Take care.
Before every visit I have a conversation with the healthcare provider. They can’t share her info with you without her permission but there is nothing that precludes them from listening to you
With my spouse, his diagnosis did not make much of a difference. But you do need to get her financial affairs in order!
Are you going to her medical appointments? You can go and tell the doctor what is really going on.
Best case is to get financial and medical POA but you may have missed your window since your mom has to consent. If she’s not paying her bills you can offer to take it over. Have her put you on her bank accounts so you can write checks or set up autopay and also keep an eye out for fraudulent charges.
Unfortunately, though. Waiting for something catastrophic to happen is how many old folks finally get help because they won’t or can’t admit to disability.
I will usually send a narrative to the doctor before the various appointments. They can't give you any information unless your her MPOA, but they can listen and accept information.
In my case it's my wife and I'm usually in there with her, and am her MPOA so the doc can speak freely with me. I do it because at times she reacts like I'm taletelling on her and gets upset. With the narrative the doc already has all the info.
I called the doctor’s office and spoke with a nurse practitioner and sent a letter to my mum’s doctor outlining all of my concerns when I knew she had a doctor’s appointment in April 2020.
I had been helping her for over a year at that point with bills and mail.
I found out through her mailed bank statement that she took out $30k in small bills out of her savings in two trips to the bank in February. And forgot she took all that money out and where she hid all of it. (Yes, I found it). I enacted the financial power of attorney and left her with cash. When I talked to the bank, it turns out she tried to take out $60k. She hid a ticket for driving through a red light near her house and asked my aunt and uncle to help her pay it since she didn’t have her check book or credit cards. She had trouble finding her doctor’s office in April when driving there and didn’t know how to use her phone gps or the gps I bought her years before that.
At her doctor’s appointment, she was started on Aricept (Donepezil) and restarted on 2 medications that she had stopped taking without telling anyone. I put her weekly medication in a pill sorter; she had several pill sorters in her house and I hadn’t monitored her meds before. She took all of the pills within a few days because she didn’t know what the abbreviations for the days of the week meant.
During her overnight ER visit, she sundowned and wandered; her discharge note said she was unsafe to live alone. Between the 2 months it took to set up a neurologist and MRI, she didn’t remember the ER visit.
I already had paperwork for medical power of attorney/living will/release of PHI that my mother had assigned to me 5 years before that when I was helping my dad. When my mother would say she was going to have the power of attorney revoked, I let her know that was fine to assign someone else but the doctor would still say she was unsafe to live alone. I would have to show her the paperwork from her neurologist, MRI and ER visits and she would still want a “do-over” for her memory testing.
She lived with me for 14 months during COVID. By the time mum moved to assisted living, she didn’t say a peep except to occasionally say she needed to buy a house so she could move out. She had forgot about her house.