Dealing with the subject of death

[halfin]

Hi Vicky - None of us can be there with you and appreciate all the complicated problems you are facing. Please don't take this suggestion the wrong way, it may be completely off base. But earlier you wrote, "They don't want Jan sleeping in the same room with Steve because she moans very LOUDLY when she's asleep and she calls out his name; although she's sleeping. This keeps waking him." I don't know if they have gone ahead with this and are sleeping separately. But my thought was, maybe with the bipap Jan would sleep better and quieter, and maybe that way they could sleep in the same room.

Again, I understand that you are only able to describe a simplified version of a complex situation, so there may be many reasons why this would not work, but I just thought I would mention it in case it sparked any ideas for you.

[lgaudin]

I am new to this forum, and it is my Mother in Law who has ALS. She has had it since late 2001, and is in the very final stages now. When she got pneumonia about a year and a half ago she had to be hospitalized. (She and my Father in Law were living in a wheel chair accessible condo with nursing aids coming in 3 times daily)As the weeks went on and the doctors kept her in the hospital she started to ask when she was going home, that she was better, and wanted to go home. The fact was she was worse and her ability to breathe had gone downhill drastically. They also knew that my FIL (who was then 90 years old) was no longer able to take care of her. We wondered what was going thru her mind and how could she not realize how bad things had gotten. Mom is very strong willed and I'm sure she was willing the "badness" of the disease away.
Maybe it's a coping mechanism, it's human nature to hope. I don't know. Mom is now maybe a day or two away from passing on and I'm feeling so lost. I wish there was something I could do to comfort her but there isn't really.
Laura

[JanetAnnGarcia]

Jan & Steve have started sleeping in separate rooms and it hasn't been easy at all. Every night they go through the same thing, Jan doesn't want to go to bed without him, they argue, they both end up totally upset and nobody has a good night. Jan doesn't want the Bi-Pap (the doctor said he was going to send it through the insurance, is sure it will be covered and will have it ready when Jan is ready). The doctor explained to all of us how much this would help (he's been doing his homework). It just seems like she's fighting us on so many issues. She's depressed, he's depressed and angry, my mother is angry, my husband, sisters and dad are worried as all get out; now not only about Steve & Jan but my mom & me also, I'm depressed, angry and have a lot of anxiety. Jan is becoming so very difficult to understand and I know that frustrates her. It frustrates all of us. But she gets to a point where she throws a temper tantrum; shakes her head back & forth, yells no (this she does really well) and tries to get us to go away with a wave of the hand that she still has some limited use of. She uses "I'll think about it" when she wants us to get off her back; i.e., the Bi-Pap, the sleeping arrangement (BEFORE the decision was made for her), going shopping, going for a walk... I finally decided she needed to get out of this house so we went lunch today with her aides, then took her shopping to her favorite store. She seemed good until we got home. I brought dinner back for Steve & mom and we sat with them while they ate. At one point she decided she wanted to go into the living room so I started backing her up and she threw another tantrum. She said I wasn't going backwards; which I was. My brother snapped and told her to quit being so impatient which started her crying so badly she needed to be sedated; which my brother absolutely hates to do. I think he thinks it's better for her to learn to handle the situation rather than escape it. WHAT DO I DO? I'm feeling so lost. We're all feeling so lost.

[BethU]

Janet ... ask Jan's doctor to see about medication for Jan for emotional lability. If she switches from anger to tears and cries so hard she has to be sedated, that's another of the byproducts of ALS. Her crankiness and stubborness may also be a result of ALS ... I don't mean that she is reacting "normally" to an extremely frustrating situation, but that ALS produces unnatural emotional expressions and responses. It's chemical actions in the brain that she has no control over.

That doesn't make it any easier for those around her to deal with. I'm so sorry your whole family has been affected. It is always those closest to the PALS who get the worst of it.

Your doctor can research what kind of medications will help Jan. Speaking from experience, these outbursts and the irritability ... and the indecision ... are as hard on Jan as they are on you. Unfortunately, they are very characteristic of ALS.

Hang in there. Your family is giving her terrific support, and she is blessed to have you.

[brooksea]

Beth just replied as I as typing this.

My husband is on Lexapro. As in Beth's case, my husband was laughing and crying and pitching fits too! Now he is so much better.

I know how those emotions can get the whole family embroiled in a never ending cycle of anger and pain. No amount of negotiating with your SIL will work to help this if she has EL. She will have to rely on medication to stop it. I found the more I tried to reason with my husband about how UNreasonable he was being it just backfired.

If you do a search on this site re: emotional lability, you can see what others have taken to help this part of the disease.

Good Luck!

PS - Your brother and you for that matter may need to look into getting some antidepressants as well to take care of yourselves.

[JanetAnnGarcia]

Thank you for the advice. I'm going to research EL and have the information ready for the nurse to deliver to the doctor.

Jan is currently taking Citalopram, plus Lorazepam. My brother FINALLY (about 2 weeks ago) got on Lexapro; he refuses to take a sedative. I take Celexa, plus Xanax (as needed, which is becoming more frequent). My sister is on Lexapro, my dad is on Prozac and my other sister is on Citalopram. And right now I can't remember what it is my husband takes . I'm going to make a doctor appointment for my mother so she can get on an anti-depressant & sedative.

Please pray for us. We need all the help we can get right now. God bless you all.

[JanetAnnGarcia]

I just got done reading on EL. I hadn't realized the Amitriptyline Jan takes is for this condition. I'm going to talk to the nurse about increasing the MG, at least on the Citalopram and possibly the Amitriptyline. Jan is only on 20 MG of Citalopram, I take 40 MG of Celexa and I'm feeling like I may need to increase.

[LaurieS]

Just a thought, but I would get a pyschiatrist to handle these meds. I'm not in this field, but I seem to recall from my pharmachology classes that Amitriptyline can cause hostility as a side effect. Also, increasing the dosage is not always helpful. These kinds of meds (antidepressants) can be tricky and the Dr.'s recommendations should be followed exactly.

Maybe you already have a psychiatrist involved, so maybe my post is not helpful. Anyway, these are just my thoughts. I'm trying to help.

[BarryG]

Hi Laurie, just thought you should know that Janet Anne passed away on Nov 11, 2009. Thanks for your information anyway, I tried Amitriptyline for excess saliva but it caused my blood pressure to drop too much so I quit it. I did not notice any antidepressant effect but maybe it was because of the dose I was on?

[LaurieS]

Hi BarryG, thanks for responding to my post. I am a very first time newbie here, as someone very close to me is only just now getting started with his very first appointment to the neurologist. I hope for the best, but I feel awful.

When it comes to drying up salivary flow, Amitriptyline works great and very dependably. When it comes to improving mood, the perfect dose is a bit harder to find. Often times, less is more. Generally, the lowest possible dose is perscribed in the beginning, which is great because if there are unwanted side effects, then they won't be as dramatic.

However when it comes to mood, the psychiatrist is most experienced at determining if any better result can be gained by increasing the dose. I'm aware that other kinds of doctors will try to ballpark what drug will work best for most people, but I rely on the person who has the most experience with this stuff to come up with the best choices. I hate to say it, but sometimes we have to go with something that offers a little improvement. We haven't found the magic bullet for improving the mood in everyone.

Be real careful not to quit any anti-depressant abruptly, and follow orders exactly as bad things such as nightmares can ensue.

OK, I climbing off my soap box now...... I hope I've thrown out some ideas that can help in some way. The good news is that there are plenty of good meds for drying things up and I'm sure you may well find the best medicine. In the meanwhile, there is laughter and love. ^_^

God rest Janet Anne.

[BarryG]

Welcome to the forum Laurie.