My mother was recently diagnosed with Alzheimer's. A couple of questions...

Todd in G.R.

Hello, all. 

My 79-year-old mother was diagnosed with early Alzheimer's Disease in December 2020.  I am my mother's legally designated patient advocate.  This is my first posting on this or any message board.

Our first step was to see a neuropsychologist in March 2020.  This doctor's report stated that my mother was suffering from cognitive impairment that was likely related to dementia.

My mother rejected this report, but after a couple months passed, she agreed to see a neurologist who specializes in Alzheimer's and memory disorders.  It was this doctor who diagnosed my mother with Alzheimer's in December 2020.

The neurologist told me that it might be best for my mother that she does not know her diagnosis.  She does understand that she is dealing with some cognitive impairment, but that is all.

In addition, the neurologist recommended no medications, stating that in his experience such medications do little or nothing for people in my mother's situation.

My questions are many, but following are the two for which I would appreciate advice from someone who has much more experience that I do caring for a loved one with Alzheimer's.  I do realize that all situations are different.

1. In your experience, did you inform your loved one of the diagnosis?  If so, are you thankful that you did?  If not, are you thankful that you did not?

2. In your experience, did you find that a certain medication (or multiple medications) helped to slow the disease, or provided any significant benefits?

Thank you in advance for any advice or information that you are willing/able to provide.

Todd

Cynbar

Todd, welcome to these boards. You'll find a wealth of experience and advice here, as well as a group of very caring people. It has shown me that, truly, no one understands what we are going through better than someone who has experienced it. Come here often and read everything. Not all issues will come up with your mother, but it is better to be educated on this disease and ready for anything.

I'll tackle your questions"

1) Should you tell your mother her diagnosis? Personally, I wouldn't unless she asks, and you think she is still cognitively sharp enough to process it. You are moving into a place where it is all about kindness to her, and keeping her comfortable. It is deeply upsetting to hear that you have a terminal and dreaded diagnosis, and she will soon reach a time when she won't remember (if she's not there already), so each time hearing it is like the gut punch of the first time. My DH heard his diagnosis a long time ago and it was devastating for him. He has no memory of that, so now I don't tell him, just speak vaguely of "memory issues" and that seems to satisfy him. However, now is the time to talk to your mother about getting all her legal and financial affairs in order, and you should have all that information.It's also time to start thinking about plans down the road, as dementia is progressive and will get worse. But most posters here present that as something everyone should do, not because someone has a dementia diagnosis.

2) The medication issue is harder to quantify. My DH was prescribed Aricept, and later Namenda was added as his symptoms progressed. But the goal is to slow the progression, and there is no way of knowing if he would be worse now if he had not taken them. I hear some people have side effects, which he did not. And his insurance pays for them, so the high cost isn't a consideration. In the end, it is a personal decision.

You'll get other input, I'm sure. Some patients and doctors believe in the medications, others feel they do very little good. Very hard to know, I think. But feel free to come here with any questions, we are all happy to help!

Quilting brings calm

I would not tell your LO her diagnosis.  She’s been told MCI and that’s probably sufficient. My Mom got her MCI diagnosis in March 2020 also.  Her only visit with a counselor in a geriatric psychiatrists’ office.  She refuses to go back because she sees no point in ‘talk therapy’.  Since then I was told in an ER that MCI is a politically correct word for mild dementia ( it’s not, but the difference  between the two may be slight). Her PCP used the word dementia as her condition to her( in my Dads’ presence)  two weeks ago.  She didn’t catch it then and he ignored it and they’ve never mentioned it since.  So what would be the point in me telling her? 

My Mom has been on a generic Exelon patch for 3 months or so.  I don’t think it’s helping, but am willing to let it ride for a while, as she doesn’t complain about it like she does her mood stabilizer. 

Iris L.

Welcome Todd.  One use of the memory medications is to enable the PWD (person with dementia) to remain at home in the community for a longer period of time, before placement into a facility is necessary.  IMO, if the PWD can perform ADLs, including toileting, a trial of medications can be warranted.  If they work, it will help the PWD and the care partner.  

P.S.  Where is G.R.?

Iris L.

GothicGremlin

Hi Todd,

My sister went to a neurologist first, went through all of the memory tests - which were inconclusive. She then had an MRI and a PET Scan. After those results came in, that's when her doctor gave her the diagnosis. My cousin and I were in the room with her.  My sister wanted to know what was wrong with her, so we went with her so she wouldn't be alone. We were expecting that she may have had a stroke, and we were all blindsided by the Alzheimer's diagnosis. It took her awhile, but she was able to process it all.

Would I tell her she has Alzheimer's if she forgets she has it?  No, probably not.  It would be too upsetting to her. She'd probably fixate on it for some amount of time, which can spiral if I don't redirect her in time.

I'm glad she knows because we've been able to discuss her feelings about it, and make plans. She was still pretty capable right after her diagnosis, so I took that opportunity to get the POA in place, her will - all the legal stuff. She wanted to participate in those decisions, and we did it soon enough that I never had any doubt that she was fully participating. We were also able to go to Italy at around that time. Italy was an important bucket list item for her, and if she hadn't known her diagnosis, she might have put the trip off, and then might not have been able to go. Covid aside, there is no possible way she could make a trip like that now. Not a chance. We did that trip in Sept. 2019, so her decline has been fairly rapid, or at least it seems that way to me. So I'm glad we did things the way we did.

She's taking two medications - Aricept and Namenda.  She tells me she feels more "clear" when she takes them. Her doctor says they work for some people and not others. Is she really getting a benefit from taking them?  Honestly, I don't know. I know that taking them makes her feel like she's "doing something", so I guess that's good.

Mindaugas_aichom.com

Hello, Todd, in a case you or your mother owns a smartwatch, I would like to offer you 5 years of free access to Aichom app (currently on Apple Watch) - It now features location tracking, setting 'safe-zones' and being notified if such zones are crossed. In the near future, we seek to offer: a dementia Health-tab, Reminders and AI-based meaningful insights, which are comprehensible for people living with dementia, 24/7 caregiver support throughout the app for family members.

Please let me know in case you would be interested, I'd like to help at this stage and hopefully give you some peace of mind. www.aichom.com

LicketyGlitz

As you move further into your care partner journey with your mom it will probably become easier to know when information such as her diagnosis will soothe her or be upsetting. And if you're like me, they'll prolly be some huge missteps to learn from!

I did tell my mom early on (she's is the final stages). When she would become frustrated from her lack of understanding I'd just hug and tell her that her brain was working differently know and she wasn't a dummy or being stubborn, her brain was just doing her a disservice that wasn't her fault. That was often very helpful for her, but not always! And I try and gauge where she was when she would say "Why can't I do this!" to see if the truth was going to give her some relief or make the situation worse.

As far as the drugs go, like Cynbar says it's hard to know if my mom starting Aricept and Namenda early in the disease were helpful in slowing the progression. I do know they helped give her some emotional stability in the beginning, and I would overrule the neurologist on this decision - if they don't offer your mom any improvement than you can always stop having her take them, but to dismiss them outright as not helpful... well, I think your family should be given the opportunity to see that for yourselves.

This is a tough journey for your mom and all who choose to assist her in this journey, but it is not without it's love and laughter. I wish your family access to moments of joy while wading through the too, too long horrid. Good luck!

RobOT

Todd, sorry you have to be here, but hopefully you will find this place a help.  As people have said before, there's no real way of knowing whether Aricept will or in our cases, has, slowed the progression of the disease.  I gave it to my father because I didn't want to deny him the chance to have a better life.  At some points in this disease, mood stabilizers are invaluable both for making the patient's life better and to make it easier to care for them, which makes everyone's life better.  Strong emotions and delusions can be really hard to deal with, and it's easy to forget in our own frustration that it's even worse for the PWD to be ruled by these things.  If you feel the need for medicines, ask to see a geriatric psychiatrist, there are medications that work well for mood issues.  As for telling her about the diagnosis, she probably won't be able to process that. My father laughed when the doctor told him, and joked around, either out of fear or denial.  Now we just refer to "memory problems" and inner ear problems for his balance.  Disagreeing with his mixed up stories and confabulations just make him angry, so I'm convinced telling him about his diagnosis would be counterproductive if he could even process it.  Since every PWD is so different, this journey is usually flown by the seat of your pants, and you will ultimately be the one in charge and organizing things.  There's a huge store of wisdom and experience here, taking advantage of it will help.

abc123

Hi Todd, I'm glad you found us! Welcome to the family. Like others have mentioned, this disease is different for each PWD. When it comes to bad/sad news, I never tell my Mother anything more than once. When it came to her diagnosis, my Dad discussed it with her and they made plans together because she was still able to process things. We don't mention it anymore. She took Namenda in the early days. I don't know if it helped or not. I can't imagine not giving it a try.

I wish you luck. There are many wise and caring people here who can help you. Ask any questions you may have and feel free to vent. 

Katy Mac

My mother just argues with anyone that tells her that she has alzheimers. It's called anosognosia.

She is on Rivistatin and mementine. It has made a big difference.

Jgiles9289

My mother was diagnosed with Alzheimer’s 4 yrs ago after I saw signs and changes for approx 2 yrs. At first I thought my mom was hiding it from me as she had a history of not telling me bad news to protect me.  After a while, I realized she had anosognosia and wasn’t aware there was anything seriously wrong. I decided I wouldn’t share it with her or bring it up around her since she didn’t remember it anyway. I don’t think it would have helped her in any way for me to talk to her about it.  Unfortunately, her dementia moved very quickly so no medications helped her. The only thing that has helped (not with slowing rate or cognition) is trazadone. She started taking that at night which assisted in consistency in her sleeping.

MimiMinder

Hi Todd and welcome to this journey that is so much easier when shared. People here 'get' what you are dealing with. As for my mother, we have not shared her ALZ diagnosis with her. She heard the MCI diagnosis years ago, but that has faded from her memory. We just tell her that her memory is "squiffy" or some other term and she is satisfied with that. She is super frustrated that she cannot remember things (both big and small, from recent times and long ago) and we try to roll with it. The first time she asked what our relationship was hit me in the gut. Learning to not show reaction to things that deck me has helped a lot. 

Sorry, a little of topic there. As for meds, she was on Namenda for a period of time, but things got even screwier, so we discontinued. Due to her mix of meds and medical conditions, that was the only option her medical team was comfortable prescribing.

Know that you have a network of support!

BarbaraG

Hi

It was similar for us with my mother in law. She knew she was forgetting things and chocked it up to old age and kept making excuses. In 2018 we started the round of doctors and tests.   It got worse and worse and we asked her doctor for help but he was either in denial or just dumb. We took her to a neurologist and he diagnosed her with dementia.  2 CT scans were done over a couple of years and showed that her brain was shrinking. Then we went to a geriatric psychiatrist and tried the medication Aricept/Donepezil.  I don't know if it helped or not. She continued to get worse. She asked if she was going to get better and the doctor point blank told her no and explained the condition to her.  I don't think she understood.  She continued to get worse and now everything is "word salad."  She might be inside her head making sense and understanding what we say but her answers are never appropriate.  It sucks.  She is going backwards in time and talks about her mother and her childhood.  We put her in a facility Oct 2019 for 1 year and then moved her closer to us to another facility in Oct 2020 but in January 2021 the facility was full of covid so we brought her home.  She cries and whimpers alot and cannot tell us what is wrong.  Every question is answered with "no."  There is no pill and no cure.  What a rotten disease!  I'm sorry you had to join this group.  I'm sorry I am in this group. I'm sorry any of us are in this group.  Good luck to you on this journey and God bless you and your family.

Barbara

Austin Mom

I really appreciate Todd asking this question, as my family and I are new to this as well. Thank you so much for the information and even more so for the support! I am grateful for all of you and your willingness to share your experiences.