Living with me, but refusing to let us know anything

[melalthia]

Has anyone ever had an experience where your PALS was living in your home... but refusing to tell you anything? What doctors or therapists say for example? My mom has completely cut off her family from her doctors. She's instructed all of them to not reveal any of her information. She's even written our ALS regional case manager and asked her to "respect her privacy" which means.. don't talk to us.

Now, if we were a pushy lot who was trying to strong arm her and make decisions for her.. i could kind of understand this attitude. But she lives in our house. It's not as if we aren't affected if anything digresses or anything goes badly. We've been saying over and over again that we just want to support her and be there for her and she gets to call all the shots and make all the decisions. But her paranoia has gotten so bad.. she even thinks the doctors are only out for her money.

It's made me really sad and angry towards her. I keep trying to rationalize it by saying "its just this stupid disease.. it's not my mom." But if she cuts us off from her ALS team (especially since she has refused to see doctors anymore) it means we as her caretakers are completely alone. My husband and i have been looking out for the signs of the FLD but my mom has always been suffering from depression and paranoia.. so its been hard to tell if it's gotten "worse." And now that she refuses medication, interventions or doctors.. it feels like i'm on this island.. trapped.. without any way out. Its really scary. Not to mention, like what kind of a relationship is this to foster with your kids? If you suspect everybody is out to get you and you distrust everyone.. aren't you just going to drive the people who love you the most away? It just doesn't make any sense.

-mel

 

[Northern Dancer]

Melalthia,

You need to take care of yourself and your family. Being sick does not give your mother the right to sabotage your life. It is your house and you should have some ground rules. You need to make very clear that you will not support her selfishness. If she can't comply then you must tell her what other options exist for people who need care. And carry through.

Get social services involved. Insist on a joint meeting with her doctor. Be firm. Get counseling for yourself. You can't live like this. Your children shouldn't have to.


Lorna

 

[LauraW]

I totally agree with Lorna. Is there anyway you can have a family meeting and state to your mother that if she wants you to continue to be her caregiver and to live in your house that you need to have some say in her care. It would be great if you could get power of attorny. It is not ok for her to treat others that want to help her this way. You need to lay some strong ground rules. Your family has to come first.

 

[melalthia]

hi peeps

I appreciate your thoughts. It's tough situation and my mom is incredibly strong willed and equally strong in her desire not to focus on this disease as much as she can. I have sympathy towards it because it's her desire for control, yes? She has gotten it in her head that the less she tells us, the less it will burden us. Also, she doesn't want to prolong her life in anyway.. therefore she doesn't want to spend her time at doctors and talking about her condition. She also is worried I think, that because we love her we will try to force her into things she doesn't want to do.

Of course, this logic is completely broken. Its not saving us from anything.. it's only making our time left contentious and difficult. Her emotional lability is a factor.. the fact that she's always had issues with depression and paranoia and secrecy... the disease just magnifies all these things.

I know you are right about the family meeting. In the beginning in September we're taking a family trip to france. Its a huge deal, because my mom has always wanted to travel but never had the means to do it. It's going ot be hard too.. because the only liquid she can get down right now is V-8 juice and she's very particular about it and they don't sell v-8 in france. (Guess we'll be truckin it with us.)

The one thing she did tell me about her meeting with her speech therapist is that she's managing decently on the semi-solid diet she's on right now. (her weight has stabilized.) I am going to try and get a conference call with Dr. Loman-hoerth (her als doc) and see if i can get info for signs to look out for in terms of deterioration with her eating and breathing.

After we come back from France.. I will force t he issue of power of attorney. I tried once before at a family meeting and it didn't work. Maybe after france she'll be more pliable....

thanks for the support guys.
I'm not always able to check in very often, but just having you guys around to talk to about this stuff is a huge comfort.

-mel (my name is melanie. Melalthia is just my login.)

 

[abbas child]

Mel, I am sorry it is the way it is. I wondered if you could write her a letter, telling her that you will respect her wishes about prolonging life, and even download the advance directives forms, if you haven't already done so... which gives her the assurance that she really is "in charge" of her decisions. I'd also download the DNR and have her fill that out. Even if it's totally unnecessary, at least she'll know that you're playing by her own rules, so to speak. France sounds so wonderful, and the plans you have for the family vacation complete with V-8 (Laughing... that's one of my drinks, too!) are so loving and very kind. She may not realize it, but your mom is very blessed to have you and such wonderful support. I certainly hope she comes around to a place of living in peace rather than fear. You're in my prayers.
Ann

 

[Sophia77088]

Hi Mel,

My moms is going on year 5 of living with my husband and I . And my mom too cut me off from knowing anything at 1st. It was like it was a big secret! I didn't even find out about her diagnosis, until 1year later when I insisted on accompanying her to a Dr.'s visit. And it was only then, that I learned her diagnosis and the severity of her condition. But she became more open ( as she really had no choice) because her condition got worse fast, and I had to start taking care of her, and handling all of her affairs. I am now her full time caregiver. So I guess I would say to you to, kind of push for her to talk and be more open,and let her know your only concerned about her well being.. because she gonna need all the support she can get, shortly.

Sophia

 

[Katie C]

Mel.. since Dr Loemen-Hoerth is her doctor and she has a special interest in ALS-related dementia, I would suggest the following. While she cannot reveal information to you due to your mother's wishes, that doesn't mean you cannot relate your concerns to her. I would leave her a message saying exactly what you said here, that you are concerned about dementia but because of your mom's other issues you can't really tell. She can follow up on those concerns if she thinks it adviseable. I'd also contact the social worker at UCSF and tell her your concerns. Again, they can follow up on your concerns without breaking confidentiality. We used to use this method with my grandfather.. who did not have ALS but was one of the most stubborn human beings ever put on this planet!