Herdaughter- update and concern

[Herdaughter]

I’m devastated. My mom has been telling her friends and doctors that she doesn’t trust me. She even told my husband that he should be concerned about his own safety. Her friends who have known me since I was a child told me that something wasn’t “right” with my mom. They told me what she said and I’ve been bawling ever since. I would NEVER EVER hurt anyone.

Her friends told me she told her doctors this too. No wonder they have been rather cool with me. Her friends and I went with mom to her latest doc appointment (before I knew about all of this) and they said there is no way that the doctors could believe what mom but I don’t know. I don’t know what to do. My mom won’t go into assisted living as she doesn’t think she needs it yet and refuses Home care. She tells me she is fine and that she has me to care for her as I come down two weeks a month.

What am I supposed to do? Her friends know that I would never hurt my mom which is why they told me what she said. They told me it was as if she just wants me to have a big mess to deal with. That she would go to her grave not trusting me. They suggested that I only go down there with another person so she doesn’t accuse me of anything. WTH?!?!? I can’t believe this is happening. All of this while she’s always thanking me for everything I do for her?

What do I do? I don’t feel like I can call the doctor now because she has told them she is concerned for her safety. Even tho she told the doctor last week when we were all sitting together how wonderful I’ve been caring for her. I welcome any advice. I’m devastated.

 

[affected]

Re: CALS Roll Call Continued

herdaughter - if this is radically different behaviour to what your mother normally displays she may have brain involvement known as FTD (fronto-temporal degeneration or dementia). The behavioural variant is quite common with ALS and characterised by changes in patterns of behaviour that begin subtly and build over time. Most often the changes in personality begin before the physical ALS symptoms.

Or, your mother may be in a high state of denial and shock and trying to pretend that there is nothing serious wrong and making these accusations to take the focus off her disease to relieve her own distress. Not a nice way to go about things, but another possibility.

You may want to think carefully and get your initial reaction out of the way to decide on how to approach dealing with this. I'm so very sorry.

 

[Herdaughter]

Thank you Tillie,
I just spoke to another friend of hers who thinks mom is in denial and is very scared but that she is also acting much differently than she normally does. He also reminded me that the doctors would not have ordered at home OT (per my request) for my mom and me to learn how to transfer her safely if they thought she was in harms way. Instead they would be calling senior services as mandatory reporters. That in itself has calmed me down considerably.

How do I (or do I) talk to the doctor about my concerns regarding her behavior? Will they even take me seriously given what she has told them about not trusting me? I’m really concerned about her living by herself.

 

[KarenNWendyn]

Agree with Tillie that FTD would be the #1 concern. Less likely, but worthy of ruling out, are sleep deprivation and CO2 retention.

 

[KarenNWendyn]

Regarding your concern about talking to the doctor — I suggest talking to the social worker first. He/she may have some ideas. Then talk to the doctor. Tell them what you expressed here.

 

[soonerwife]

So sorry you are going through all of this. I can't imagine what it would feel like to have your mom telling people she doesn't trust you. I agree it could be FTD. A social worker would be a great place to start and I can't imagine that it would hurt to mention it to her dr as well?!
HUGS!

 

[Lscott71]

I agree about the FTD. My husband got very paranoid when his started.

 

[Herdaughter]

Thank you guys. She has also told the ALS Association social worker that she doesn’t trust me so I’m kind of at a loss there too. Her friends are drafting a letter to be sent to the doctor outlining their concerns about her state of mind and that I’m an excellent caregiver and would never hurt my mom or anyone else - ever. They feel like it’s important enough for documentation. I can’t believe this is happening.

 

[Herdaughter]

Thank you so much for your advice. I’d be lost otherwise.

 

[lgelb]

Agree with all the suggestions -- would also ask what the legal framework you are operating under -- do you have power of attorney of any kind? Does she have an advance directive?

In re FTD generally, I noticed that there is now a dementia-specific advance directive online, that might be worth considering as PALS complete other advance planning documents. It is aimed more at progressive dementias that have distinctive lines in the sand, but might be useful as a discussion starter. "Quality of life" encompasses both mental and physical wellbeing.

 

[affected]

It's a really difficult one - the paranoia makes it difficult to address, especially as they don't lose their memory, especially about events they feel justify the paranoia!

Her friends supporting statements will really help, and then you could talk to her doctor or clinic of your behaviour variant FTD concerns and talk strategies.

If you click on my user name beside this post and choose to view my homepage, go to the section on FTD to read more and you can also pass that on to her friends if you want. I totally get it, as I went through the double whammy nightmare with my husband. Understanding it will help take some of the sting out of the awful pain of the accusations.

At first no one knew but me, but as time went on it became apparent to most health professionals as well. I did not have my husband formally diagnosed because of the depth of his paranoia and the dept of this rage - what would it have done to help him to watch me force him to be assessed? I'm not saying don't get your mum assessed, just commenting that this was the choice I made.

 

[Herdaughter]

Lgelb- she does not have a POA or advanced directive. Everyone including her doc, social worker and all of her friends have advised her to get those things done but she always says the time isn’t right. She won’t budge on this at all. I’ve been advised to file for guardianship but I just don’t think I can bare to do that - especially as she’s declining rapidly. I just wish the doctor would order hospice so she could get more help and I could be assured people wouldn’t think I was hurting her.

Tillie, I will read your FTD posts. Thank you ladies.

 

[Herdaughter]

Update: I spoke with the social worker and mom’s IV nurse. Both of them said that if there was a concern about her personal safety, someone would have been out to check on her straight away. Everyone has seen how I am with her and they aren’t worried. Both of them were wonderful and very compassionate. The social worker talked about FTD, but like you Tillie, questioned whether the benefit outweighs the costs. At this point the answer is no as she likely has months versus years to live.

To be on the safe side, my mom’s friends are writing a letter to her neurologist explaining what mom told them and the reality of the situation. That I would never hurt anyone in a million years, let alone my mom. These ladies are so amazing. They are like aunties to me and are helping out in so many ways. I am incredibly grateful.

In the meantime everyone (especially my husband) only wants me to be with her while I’m with someone else so I have proof that I haven’t harmed her, heaven forbid she fall or bump into something and get bruised. I can’t believe this is happening!!!!! She is not at all acting rationally and is refusing assisted living, adult care homes or having anyone come in to help except me........but then tells everyone she’s scared of me?!?!?!?!?!,!? She also won’t wear a medical alert necklace.

Her IV nurse is calling the palliative care folks to see if we can get them in to help her as she loves her IV nurse. Maybe she will have better luck than her friends and I have had.

I am meeting with a therapist on Thursday to see how to proceed with caring for mom while still keeping myself safe from accusations. I can’t believe this is happening. Why on earth does she tell me to come down to help her and then tell everyone that she doesn’t trust me with her personal safety? It makes no sense.

In the meantime, she isn’t using her AVAP machine (the thing the doctor said would help her the most). Doc told her that the machine will help her more than the Radicava at this point - still no luck. She uses it maybe once a week. In the meantime, she’s getting a power wheelchair on Thursday . Good gracious! I don’t know how she can’t see what’s going on around her.

Thank you all for the advice especially contacting the social worker. She said she would let the doctor know about our conversation and reiterated that people are often the hardest on the ones closest to them. She’s been through this before so it must be easier for her than me.

Thank you again for all of your advice. It’s helped a lot.
Love,
Megan

 

[affected]

Thanks for the update - if you read the information I put together about FTD you will gain a better understanding of how she is thinking and how to respond.

I went through all that stuff - Chris would blame me for amazing things - I pushed him over, I wouldn't feed him so now he was emaciated. The best one was when we spoke with palliative care and he announced (but imagine this one and feel free to laugh - his speech could only be understood by me, so he said it and I had to interpret for him) that if he went on palliative care did that mean I could smother him with a pillow and no one would investigate his death?

If you don't have your mum formally diagnosed with FTD but recognise that there is brain involvement and that her brain is wasting just like you can see her body wasting, then you can hopefully deal with it with a deeper level of true compassion. This is not your mum, this is a disease process. You cannot rationalise anything with someone with FTD, but they will remember your attempts and add it to their growing paranoia.

 

[Herdaughter]

Thank you Tillie. I wish I could chalk this all up to FTD but my mom has been pretty mean to me ever since my parents divorced when I was 7, ( I’m 46 now) so while this is the first physical accusation, she has accused me of being emotionally horrible to her almost my entire life. Luckily most of her friends know this, so they have vouched for me. She even used to call my friends to tell them how horrible I was. They quickly told her to knock it off but it hurt like heck.

Until she was diagnosed with ALS, I hadn’t gone down to visit her in years without someone else with me because she was so mean to me when we were alone. She is quite delightful when others are around.

We had a lovely talk two weeks ago and thought we had made amends. Come to find out, her recollection of it (from what her friends have told me ) is that I told her it was all ok now that she had changed. Which is not at all what I said.

I’m trying really really hard to remember that she is ill and that at the end of the day she is still my mom. I just thought we were past all of that previous stuff and on to a final chapter filled with love.

Regardless, I am taking everyone’s advice and not going down there by myself. I love my mom and always have but I’m certainly not going to put myself in jeopardy.

Sorry to rant.