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texgrl

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Hi. I'm new here. My mother in law was recently diagnosed with ALS--aprox 2 and a half months ago----her symptoms first became evident apparently in March of this year. She and my father in law didn't tell anyone what was going on until around July. She is 66 years old. She and my father in law didn't prepare for retirement, etc, so my husband and I have moved them into our home. Needless to say this would be an adjustment even without the ALS---with ALS its almost overwhelming in its intensity.

I'm not really sure what i'm looking for here. I haven't found a support group yet where i live, and i'm struggling alot with all the changes. My husband and his parents are not great communicators, and my family is the opposite, so this entire situation is very hard for me.
 

Shasta

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HI Texgrl.....

Texgrl....Glad to have you here....Share your emotions here. Read a few of the posts and the information offered here so you understand what your mother-in-law is going through and what kinds of assistance are available. Help her arrange ways of communication. If she's not much of a communicator now, it'll be that much harder even in the beginning. YOU need to help her open up.

It is so fantastic that you took them both in so they can be with family care. I know it'll be tough. Check in to some of the services offered and Social Security assistance.

The tough part will be for you to make activities for both your mother-in-law and her husband. Keep them active. Take both out for walks. Talk to the neighbors. Just be patient with her. And most of all.....Tell them how much you love them.

Keep in touch here and read read read. Glad you found this Forum.

God Bless
Doug
 

texgrl

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thanks for replying............i posted this in the general information forum but i'll repost here.

a brief background about myself and my family. my mother in law was diagnosed with als around August.

She apparently began having symptoms maybe around March from the best that we can tell. My husband and I lived about 5 hours away from his parents, so we didn't know anything was going on until right before she was diagnosed.

we saw them in April for a wedding, and at the time, she or my father in law didn't mention anything was going on. She had no real noticeable symptoms at that time, except that now that i think back, she spent alot of time sitting down. We saw them again in July--at that time, she could still walk unassisted, but she had a limp that she explained away as what she thought was a hip problem. i helped her get an appt for an mri, etc, and got her in to see a neurologist who first brought up ALS at that time--this was the beginning of august.

She and my father in law now live with my Husband, son and I in our home. She can walk very short distances, (from the bedroom to the bathroom) with a walker, and it is a snails pace, and with much effort. she now has alot of weakness in her arms, and most of the time has to use a cup with a lid that is spillproof because of the weakness.

we had an appointment at the Baylor Neuromuscular Disease Center two weeks ago that did not go well. There were several patients there who were at more advanced stages of the disease than she was, and frankly, it was terrifying for her. She had a meltdown when a Bi-Pap was suggested and we utimately left the center that day without doing half of what we had came to do. She is very adamant that she NEVER wants any assistance with breathing, etc. My husband uses a C-Pap at night and she still won't consider using the Bi-Pap.

All we have been told by the doctor is that she seems to be progressing "fast" but we still really have no idea what that means as far as time goes. what does fast mean? does the fact that she doesn't want breathing assistance ever mean that progression will be even faster?

I don't think until my husband and I were at the Neuromuscular Disease Center that it really hit home with us what lies ahead........I mean, we knew what ALS meant, and what it does, but until we saw people more advance than her, we just didn't "get it".

i'm not sure she's really gotton her head around it yet. She sent off for a hair analysis to see if she was deficient, etc in any areas vitamin and mineral wise. She's always been a big anti-doctor, pro-vitamin health nut kind of person (aside from the fact that she smokes like a chimney). Of course with this diagnosis, she is really down on doctors and said that no one can help her, etc, and i think holds some hope she can find the perfect vitamin to heal her.

my husband already suffers from depression, so this is really taken a toll on him, and this is just the beginning. I already see the symptoms of depression in myself, and I'm to see a doctor about that today. Some days are good, and I think I can handle it and be there for her, and then there are some days i spend 4 hours in my closet crying. How can i take care of her when i can't take care of myself some days?

i live in the Houston area, so i know i need to find a support group, but i know that she won't go, i don't think my father in law will go, and my husband is questionable at best.

I don't know where to go or what to do or to expect and I'm terrified this is going to tear my family apart. I have a 14 year old son who "seems" to be ok so far, but i know what lies ahead isn't going to be easy.
 

CindyM

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Hi Texgirl- sorry for what is happening to your family. I am glad you decided to join us. Welcome. the only thing I have to add is that even if your in-laws don't get support you should do so for yourself. This is a lot to deal with all at once. Keep us informed on how it all goes! Cindy
 

Shasta

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Wow that is alot and when someone is adamant as to their care, you have to respect their wishes. Make sure you build on the communication skills with her though. She will remain cognisant of what's going on but you won't be able to understand her wishes unless you prepare now. You need to sit down with everyone. You have to tell your father-in-law that his wife needs his love now more than ever. Your husband's depression needs to be addressed in an understanding manner. My brother had a hard time with my mother's ALS but he has a very strong wife. The one thing you don't want to happen is your family being torn apart.

Look on the computer for information for your mother-in-law. She might see that you aren't attacking her with medical treatment she doesn't want but rather treatment that she's more accustomed to. LOL tell her to eat that apple a day (even the seeds)and if she doesn't or can't eat the seeds, get a juicer.

Don't be angry at your husband. Be understanding. Know that it's HIS parents that he has to watch. The people that he's depended on to be his strength thoughout his life and now he sees the weight all on his shoulders. That is scary. Sometimes it takes a third party to pick someone up and carry them through hard times. Check with a social services agency there and an ALS group there to see what types of financial assistance you are availed to. Alot of men get very depressed over financial problems. Show your husband that you are willing to make some calls that he's never felt he should have to make.

See you later.
God Bless
Doug
 

texgrl

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thanks to everyone who replied to my introduction post. I'm spending a little time now just looking around and reading. I'm sure I'll post my questions later as they come to me.

the hardest part of all of this for me, because i'm an analytical person, and very numbers oriented is all the unknowns of this disease, how, why, how long do we have, etc?
 

Icanmanz

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Hi texgrl! I know this is a hard disease to deal with. I could never find the answers to all the hows, whys and how longs. When my son departed, it happened unexpectadly. I really thought I was going to have him around for a while. We were making plans, I shopped for him, he was struggling but happy because he was sorrounded by love. I didn't think he was going to die when he did. It was so shocking. Such a terrible feeling, like unfinished business. When the Almighty one carries him home, that's it. He's gone, gone forever. As I posted earlier, now I know the real meaning of never. God bless!

Irma
 

texgrl

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Thanks Irma and Doug--

Irma, i once read that "Life is what happens when you are busy making other plans." that really rings true sometimes doesn't it? i think for me i want it all to be swift and unexpected, not drug out.

by no means am i upset with my husband for being depressed...this whole situation is depressing, who wouldn't be? i just worry so much about him. I keep telling him we gotta keep going, that is all we can do. we can't enjoy the time we have if we are worried about what is to come. (sometimes i'm even able to take my own advice!)

today has been a good day. The inlaws made a trip back to their house for a few days and are on their way back today, but they haven't gotton here yet. They went home to get a few things gathered up and i think pick up mail and arrange to cut off utilities. they have both said they don't want to go back there ever, and that the place needs to be sold, along with the contents, but I honestly don't know where to start with all of that. I'd be lying if i said i haven't enjoyed having the house to myself, but I've worried about them being alone too. Sometimes they seem like children to me I guess. hopefully they took the time to make some decisions about what they want to do with everything.

I do try to communicate with her as much as possible because if left to my inlaws and my husband it wouldn't happen. Its like, if i took and elephant, and i sat it in the middle of my living room, they would all talk around it, and never once ask or comment on why i have an elephant in the living room.
 

Shasta

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Sorry Tex....by communication, I didn't mean the way you talk with her. You may have noticed her speech is getting more and more slurred. What I am talking about is when she can't talk and you can't understand her in later stages. I know no one wants to think that will happen but it does and the more you prepare to communicate with her when she can talk, the better you will be. Now when you both can communicate with each other is the time to form a language that you can both understand. Even if it starts with simple hand or finger movements for yes or no. Simple movements for hungry or thirsty. I know that communication problems were the toughest thing for me to handle with my mother. She could understand us but we couldn't understand her and we hadn't prepared in advance.....cuz we didn't know.

There may come a time when she sees that life is so precious that she wants to have her breathing assisted and that she wants fed. You'll need to understand her wishes because she will understand.

Maybe what you could do about the house: Call a realtor and see what they'll do to take charge of selling it. You shouldn't have to do anything. That's what realtors are for. Alot of realtors are used to selling houses when the owners aren't even there.

It's great that they can still get out. Maybe it would be a good idea to take your father in law out to a sporting event or a local race track. I know i would've enjoyed my daughter in law if she'd asked me to go to something like that. Talk with him about his thoughts. Spend some time on him.

Then take your mother in law out to dinner. Talk about her and her thoughts. I remember one time our VW Hippie painted Van broke down for the umpteenth time in the desert outside of Las Vegas. I had put three new engines in the van while we were going across the United States and I was at the end of my mind just wanting to roll over in the desert and waite till the buzzards plucked me away. That was when my wife stepped up to the plate. She made a suggestion and the bells of reform flared in my head. She'd lifted me up at a time when I just couldn't go on any more. Show them your concern, competance and love for them. Give them the assurance that you are there for them and you can be very responsible. Lay out a plan a realtor will discuss with you to them so they know their house is taken care of. Take that responsibility from them if that's their wish to sell it. All they need to do is sign on the dotted line (for that matter, you might get a signature stamp for your mother in law).

I"m sorry if i seem blunt but i know we were definately not ready to assume the care of my mother when she got ALS so we had to place her in assisted living, sell her house and take care of her affairs. I know it's sad to think of that but we just didn't know nor knew where to go to find out.

Hey....see if your father in law wants to watch the world series (baseball) with you. You may not be in to it but you'd be doing it for him....not you. LOL I remember my grandfather used to like everyone around when Bonanza was on LOL and i don't mean the reruns. He did it on the Sunday evenings.

Keep talking about your concerns.
God Bless
Doug
 

texgrl

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Doug,

she hasn't had any noticeable problems with speech so far--i wish i had a time frame for when that would happen. i'm such a numbers/fact oriented person. i live by schedules, and this disease just doesn't have one. it seems to be just her legs and now her arms and hands. I don't know if i said it before, but her hands don't have the strength much to hold things up. she has taken to using a sippee cup like a child would have so its spillproof. i have real concerns about her smoking still, because i worry about her dropping a cigarette and burning herself. the doctor told her it would be a good idea for her to quit, but privately he said, honestly, if it makes her happy, the outcome won't be any different if she quit or continues, and she had no intention anyway.

she rarely discusses her symptoms, etc with me or my husband. if she does with her husband, i don't know. as i said before, they are both somewhat secretive about things, that is why we didn't know until july that there was anything wrong, and the symptoms were really apparent in March, and he had been unable to work because he had to stay home to take care of her.

the problem with the house is that it is 98 years old, it two stories with a third full story of attic space, and when i say that house is crammed full of crap i am not exaggerating even one little bit. it is crammed full top to bottom. there are some companies that do estate sales and will sell off everything and do cleanup, and their take is about 30 or 35 percent. we spoke to a couple of different people who do it, but one lady i didn't get a good feeling about at all, i honestly felt she would rob us blind, and my husband felt the same way. my inlaws flip flop daily between "get rid of it all" and "maybe we could put some stuff in storage". i personally wish they wouldn't knee-jerk and get rid of everything, there are some family antiques that i really think they should keep, but we don't have any place for them where we are right now. my husband has been quick to say he doesn't want anything, to get rid of it all so they have the money, but i think that is a decision he will regret in the future. when they are gone, he will want something to remember them by.

my husband has two sisters. one is on disability from the state for chronic depression....she and her husband are offering no help other than to say what they want out of the house.

the other sister is a drug addict and is cut out of the family for 20 years. they want nothing to do with her, and from what it seems, she wants nothing with them.

needless to say i've struggled with some anger i guess you would say that it fell on us to take care of all of this. i guess that is the selfish part of me, and thank God, it doesn't come out that often. I assume that is a normal part of dealing with this disease. i hope so, otherwise, i guess i'm the worst person in the world for thinking of myself when she has so much suffering ahead.
 
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texgrl

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back to the communication.....that scares the hell out of me. i don't know how i would bring that up without scaring the hell out of her too.
 

brooksea

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tex,

Hopefully the ALS Assoc. lady can be the liaison between you and hubby and can broach the subject of communication devices etc... so you won't have to.

Let us know how the visit with the ALS rep goes...
 

texgrl

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i sent Linda an email this morning outlining some of the questions i had....one is the communication issue that i hadnt' thought of until it was brought up here. another is the issue of her hands having limited strength and my fears about her smoking and burning herself or furniture etc., bladder problems (i've noticed an increase in towels and rags and i have thought a couple of times i smelled urine.)
 
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