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buf68

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About 2.5 years ago my father (now 44 years old) was diagnosed with Bulbar onset ALS. He was doing really good until just a few months ago. He started falling a lot, and decided that he had to quit working. When he did this, my mother stopped working to take care of him. I was lucky enough to have him walk me down the aisle this summer (4.5 mins to go 100ft, but we did it). After getting married, my husband and I decided to try to help out and we moved into my parents house (into a sort of makeshift apartment in their walkout finished basement). Since this summer things seemed to have progressed rapidly. My father now basically doesn't walk. We had to start feeding him ourselves, and then he started to cough a lot when eating. So next tuesday he is having a PEG tube placed. Things have gotten really difficult in the house. I have a 10 year old sister, and she doesn't even talk about anything that's going on (it's a lot for a little kid to deal with). My mother is having an increasingly difficult time balancing her roles as wife and caregiver. She has respit care that comes 2X per week for 3 hours, and a few other services (home health aid, PT, OT, speech, nurse) that come out a few times a week. It's just been very hard to deal with. My mother had to deal with growing up with a brother who had muscular dystrophy, and all she wanted was a healthy normal life for her family, so she is completely devastated. My dad seems to be getting scared of her, mostly in terms of her inability to deal with her anger. She feels burdened by the disease and all of this, and takes it out on the whole family. My husband and I are a help when we can be, but I'm a full time graduate student, and he tried his best ya know. I don't know how to alleviate her stress. She is having a very hard time coping. It's almost like she just wants him to die already. He wants to get a vent when the time comes that he'll need one, but I am really afraid that somehow she is going to talk him out of it. It's so difficult to deal with all of this, I don't know how anyone else handles it. Really just any words of advice on how to deal with an overstressed (occasionally suicidal) mother/caregiver and also any experience with PEG tubes and their upkeep, and really any words of hope would be highly appreciated right now. Thanks.
 

hboyajian

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I am so sorry to hear of your father's condition and the difficulty your mother is having with it. Bless you for being there and doing your best to help. I do not have a lot of experience with this, as my dad was recently diagnosed, but I have some ideas to share with you until those with more experience can share their knowledge. It sounds like your mother has some issues she may need professional help with, such as counseling or anger management. There are also support groups for people wiht ALS and their caregivers. Check with your local ALSA or MDA. Your mom might get some ideas that help her deal with everyday difficulties and also not feel like she has to suffer alone. Another thought is that it might be better for your mom to go back to work and hire a daytime caregiver, so that she still has a life outside and doesn't have to give up everything she was doing before. I don't know if this is a viable option, but it is something to consider.
 

CindyM

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That's good advice, hboyajian. This disease affects the entire family! I wonder, buf68, what your Dad has to say about all this? He knows your Mom better than almost anyone and he knows his condition best of anyone so it might be interesting to see what he thinks should be done...Just a thought...
 

buf68

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I can tell that he's really scared right now. It's odd because he has always been the strong reliable one in our family. Now he's so weak. He knows that she has anger management issues. We are trying to get her to go back to her psychologist...I have no idea why she stopped in the first place. It's been very difficult lately and I think that is why. I'm not sure that we can afford a daytime caregiver, even if she did go back to work. Plus he is very clingy to her lately. He doesnt like it when she is not around. That's something he's never really done, and I don't really understand it. Is it normal for him to cling to her so much after all of this?
 

CindyM

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I'm not a psychologist but I'm guessing since he's dependent and vulnerable he's going to want her around more, and if she's stressed his neediness will make her more so. It will be a big adjustment for both of them to learn to rely on someone else once and awhile but once they adjust they'll probably be glad they made the decision. It sounds reasonable to me that your Dad would want to feel relaxed during this stage of his illness, and I'm betting your Mom will want to know, when she looks back on all this, that she gave him quality time when he was with him. I'm guessing that it may not be so important to spend large blocks of time as long as she and he can enjoy their time together.
 

buf68

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So we went in for the PEG tube placement today, and were there from 1pm till 6pm....they put my dad under sedation, but couldn't do the placement. They said something about his stomach being severly J-shaped and that they would have to schedule a different time for him to come in so they can do it "under Xray". We are sooo annoyed right now. Why couldn't they just call down and say "we have to come down and place this tube" It's like seriously, you'd think they would account for things like this before the day of when your patient is sedated...ugh!
 

Al

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It sure makes you wonder what some of these doctors are thinking these days. My friend just had cataract surgery and the doc put in the wrong lens. Said sorry and it's real dangerous to take it out now so you'll have to wear glasses again. Just great. Hmmmm!
AL.
 
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