Should We Tell Mom If She Has A Diagnosis of Beginning Dementia or Alzheimer's

[TelHill]

I read the results of her CT scan last night. I googled what the results could mean, and there may be a possibility of those conditions. There is a big caveat, however.

My late husband had medical issues which caused his early death. He was quite forgetful which was weird at his young age. We did a CT Brain Scan and an MRI. I read the results of both tests online which I then googled what this meant. It was the same conclusion which was he had either condition.

The neurologist told us it was not the case. Radiologists simply report results, and don't look at the whole person. That is what she told us. He had sleep apnea which was causing the forgetfulness. We retook the CT scan and he still had the same results when he was treated for the apnea and his memory was better.

She will understand if she is told she has this issue.  Is this smart?

[GaGrl]

This is a tough one, Telhill. I don't know. You might ask for guidance on this from the neurologist and social worker.

My father (in his early 90s) was well-aware that his short-term memory was failing, but his cognition was still good, and he was aware and able to discuss current events, etc. He also knew that the arrangements and finances were in order for him to be at home with my mom and a caregiver, barring serious physical needs.

If you tell your mother, what will she then want? Will she want to know what her care needs will be and what she can expect to happen? Is your family ready to answer those questions?

[Notwendy]

I would leave medical news to her provider.

If you were the bearer of this difficult news, it could put you in the drama triangle. It's natural for her and family members to have a strong emotional reaction to this. It would be difficult for even the most emotionally intact family. For her, any difficult emotion is overwhelming.

The provider also has assessed her. As you said before, a radiologist only sees the picture. Her provider knows her, her medical history, and can put this in context. Also families would have questions about this- and the provider is in the best position to answer them.

The provider is also a professional. He/she has worked with patients and families with this condition. He/she is better trained to inform your mother. Your "job" as a family member is to be supportive, as much as you can, but the provider is the one to handle medical information.

[TelHill]

This is a tough one, Telhill. I don't know. You might ask for guidance on this from the neurologist and social worker.

If you tell your mother, what will she then want? Will she want to know what her care needs will be and what she can expect to happen? Is your family ready to answer those questions?

I would leave medical news to her provider.

If you were the bearer of this difficult news, it could put you in the drama triangle. It's natural for her and family members to have a strong emotional reaction to this. It would be difficult for even the most emotionally intact family. For her, any difficult emotion is overwhelming.

The provider also has assessed her. As you said before, a radiologist only sees the picture. Her provider knows her, her medical history, and can put this in context. Also families would have questions about this- and the provider is in the best position to answer them.

The provider is also a professional. He/she has worked with patients and families with this condition. He/she is better trained to inform your mother. Your "job" as a family member is to be supportive, as much as you can, but the provider is the one to handle medical information.

Thanks, GaGrl & notwendy,

Your input is invaluable. I will leave it up to the medical provider. That is the smartest idea. I won't even ask the doctor questions. That will get me more involved in this BPD/FOO enmeshment trap than I am in already.

Her cognition has declined as I have discussed, but you would not know it unless you spent a lot of time with her. She knows people and remembers most things. It's the occasional hallucinations and not knowing what streets we are driving on in our area that have been consistent markers to me that something may be off.

My mother, father and brother have made the decision for her old age - rope me in at all costs to do the work. Abuse the daughter by any means necessary to make her stay. My mother screams bloody murder when I leave the house to go to Starbucks every morning. It is a gut wrenching drama when I leave her to stay at my home a few days.  

Have written here  repeatedly that I've calmly discussed care needs with both so much am sure everyone is tired of reading it. It's always put off to later or another time. I get angry that it's falling through the cracks, and I get the you are sick, you need a doctor routine.  I believe my brother and dad are doing this on purpose. It's free will. It's not a pathology like npd or another Cluster B. They want me to have no friends and certainly never date/remarry.

Whatever the news is, I'm out on Friday.  Thank you, again, guys. I truly appreciate the smart suggestions.  

[pursuingJoy]

Telhill, I don't always comment but I read all of your posts and stay updated. I'm so very impressed with the compassion you balance with wisdom, self-care, and insight. Their expectations are unrealistic.

You're doing a wonderful job of taking care of your mom. 

pj

[TelHill]

Hi pj,

I think it's unrealistic, too. 

I have very important personal,  home and business items on my agenda which are at a standstill until my mom's appointment with the neurologist. I have to be on guard with my enabler dad & passive aggressive brother. I cannot say a word about my issues to them. They agree I deserve to spend more time at my own home one day and then lash out at me the next day for wanting to do this. My mom is either quiet or raging about this.

I am exhausted and burned out.   :-(

[TelHill]

I did attend an online meeting of Codependents' Anonymous yesterday, and read some of the online literature after the meeting. I found it useful. It gave me a bit of relief actually. I feel hopeless sometimes that I won't be able to detach from the unfair and stringent demands of my FOO.

I plan to attend an in-person meeting soon.  I miss being around others and am hoping this will help to spur me to get out of the house more. They recommend at least six meetings to see if this organization is a good fit.

[pursuingJoy]

Telhill, attending a CA meeting is a really smart move. It's a proactive step to get you out of the house around people that share your thoughts. I've found that the more support resources I have at my disposal, the stronger I feel. I'm really excited to hear how your first in-person meeting goes.

Ugh - the back and forth, push/pull stuff is draining. I'm so sorry. I'm visualizing some solid ground for you.

[TelHill]

TY, pj!

We went to the neurologist today. The doctor says it's not cognitive impairment.

The problem stems from being an elderly BPD - they follow a different drummer with illness and injury. She walks without aids in the house and the front and back yards. She broke her hip 18 months ago. She is supposed to use a walker inside the house and a cane outside because she is unsteady and wobbly. She still walks quickly and doesn't watch where she's going.  She's fallen many times, including hitting her head on hard surfaces. She has refused to go to the emergency room when I wanted to take her in the past year. Ugh!

The CT shows minor bleeding occurred on the outer edge of her brain. The doctor said this was from one or many falls. She strongly suspects the blood is dried and there is no more bleeding.

There will be an MRI in a month to double check the area in depth.  She agrees to use a walker in the house. So far, she's used just a cane the past few hours. I know she'll return to speedwalking without her aids tomorrow. I have to hang it up with this. I've tried repeatedly to convince her she needs to avoid falling by using aids.

Meanwhile, I'm tired. I will be heading to my place on Saturday. There's a CODA meeting near my place during the weekend. I have plans to see a movie in a theatre on Sunday. I have not set foot in a movie theatre in 3 years. I'm looking forward to the weekend for once. Yay!  

[TelHill]

There is a strong possibility the hallucinations she saw and forgetting streets in her neighborhood were lies.  I woke up with a strong hunch today they were to keep me caregiving, and to persuade her psychiatrist to increase her Lorazepam dosage. She loves this med.

Since this Mon/Tues, there have been no announcements of hallucinations. She knows the area when we drive.  I believe hallucinations and spatial problems are involuntary. You cannot turn them on and off.

I think goading & gentle mocking may be against SET. I've done it since being a kid and it's worked well to punch holes in her lies. Don't plan to ever give it up.

I asked  how the bunnies were and if she saw any men on the roof of our neighbor's house. I drove her to Walgreens and she correctly noted where she was when asked. (When she was "hallucinating" she didn't "know.")  I asked aren't we on Park Avenue in Manhattan or by the Capitol Building in Washington?

She was angry when we arrived home. Then she started following me around the house. I ignored her. She said at 6pm she would be going to bed but felt positive she would be passing away overnight. I laughed and said make sure to pack your suitcase.

Her behavior is child like. I know these lies on not on purpose. I feel very bad she has this emotional handicap.

Will drive home tomorrow and see a movie.  Progress with the state criminal investigation of the heating contractor has sped up. I have to keep the non-operating heater in my home until I get a few bids.  Inviting a new batch of squirrely contractors into my home is painful - playing the dumb woman or telling them firmly in technical detail what's necessary/legal gets me an overpriced bid with unnecessary work tacked on regardless.   

It's me and my space heater in a cold place until after New Years at least.

[pursuingJoy]

Thanks for the update Telhill.

She was angry when we arrived home. Then she started following me around the house. I ignored her. She said at 6pm she would be going to bed but felt positive she would be passing away overnight. I laughed and said make sure to pack your suitcase.

Her behavior is child like. I know these lies on not on purpose. I feel very bad she has this emotional handicap.

This describes my MIL perfectly, down to saying she will pass away. I experienced similar  questions when she called me by my H's ex-wife's name for almost 18 months. She insisted it was because of a cognitive memory disorder. It was odd, though, because the memory dysfunction seemed suspiciously isolated to me and my name.

I love that you can understand her disorder for what it is and have compassion, and I'm so glad you're giving yourself headspace to focus on your heating contractor investigation stuff. That alone is stressful, I'm sure.

I want to know hear all about the movie. Stay warm, Telhill.

[Methuen]

I too would leave the medical news to her medical provider.  I may be facing this soon too, although I am not certain.  But my H and I have already discussed the possibility to begin preparing ourselves.  The issue of disclosure is complicated by the BPD and how BPD affects our relationship with that person.  In my case, I know it would not be helpful to either myself or my mom for me to tell her, should it come to that.  I believe in complicated cases, it is the role of the professionals to do that.  It's their role.  We don't have to take that on.  

The problem stems from being an elderly BPD - they follow a different drummer with illness and injury. She walks without aids in the house and the front and back yards. She broke her hip 18 months ago. She is supposed to use a walker inside the house and a cane outside because she is unsteady and wobbly. She still walks quickly and doesn't watch where she's going.  She's fallen many times, including hitting her head on hard surfaces.

Huh.  This describes my uBPD mom perfectly.  This past autumn, she fell on a grassy lawn while walking (soft landing), and sustained 4 fractures in her sacrum and pelvis.  She has a long history of falls.  She was in a LOT of pain after this one.  I am an only child living 10 min away so I stepped up to the plate (she lives independently).  The more I nursed her, and showed caring, the worse she treated me.  I spent 3-4 hours a day there for over a month.  One day she raged at me and screamed that all her pain was my fault.  Then I got community services involved to provide home care.  They were wonderful with all the support they offered (including "fall prevention" suggestions for her which included always using her walker).  At the same time she began to heal.  Then she cancelled ALL the community supports.  And you guessed it...she's not using her walker any more!  I have realized her choices are her own, and the more I try to protect her and suggest ways for her to prevent more falls, the more she pushes back.  So I have stopped trying to rescue her.  I still do a couple of things a week for her, but I approach it differently than I did before.

She said at 6pm she would be going to bed but felt positive she would be passing away overnight. I laughed and said make sure to pack your suitcase.

I think this is brilliant   I wish I was better at bantering with that kind of humour with my mom.  I have to really work on not reacting when my mom says that kind of stuff.  I usually just clam up when she triggers me.  So good for you!

My mom is having a CAT scan on her brain this Tuesday.  Personally, if there is bad news results that come from that test, I will be letting her doctor share that info with her.  Nothing good can come from me delivering what is the doctor's news to give her.  That is just my situation.  Yours may be different.  

[GaGrl]

I find,with my 93 year old mom who has a few milder BPD traits, that conversations about her physical limitations are easier than talking about neurological issues. She accepts that she is legally blind in one eye (macular degeneration), and is open about her frustration at the limitations it imposes.

However, over 20 years ago, she was found to have a brain aneurysm that required significant neurosurgery. She chose to do the surgery, and the risks they had gone over with her (optic nerve damage) did not happen. What did happen, but was not noticed for a while, is that she essentially became ADHD and lost her ability to focus and concentrate for any length of time. She cannot watch a tv show all the way through without losing her focus, thinking of something else, and starting a conversation about it. It can be maddening. Trying to keep up with her changing conversational directions makes me dizzy.

This weekend, we put on a movie, and she talked. And talked. And talked. Finally I said, "Watching the movie, Mom!" She was in a snit from Saturday night until this morning, asking us last night during a commercial if she was " allowed to speak. " She doesn't accept that there is a real reason behind her behavior -- because it can't be seen. I'm ready to let her internist know it's getting worse.

And it's sometimes difficult to plan for what her reaction is going to be it affected by one of her BPD-ish traits. I'm getting lots of opportunities for validation and SET.

[misterblister]

I pushed for more than a year to have my mom tested. The doctor said Alzheimer's.

I have two regrets. First, I didn't sit down with my mom immediately after that to really talk one on one while her cognition was more intact. It was just so upsetting for everyone and it didn't seem like the right opening ever happened.

My other regret is maybe I should not have pushed them so hard. Another year or two without a diagnosis would have given them more life with ignorance bliss. It's not like they both didn't suspect something, and the meds haven't made that big of a difference.