Old 04-25-2009, 09:02 AM #1 (permalink)
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Hello all,
I don't know if this is my first post or not.... I've been reading here off and on since my dad was diagnosed 10/07. Thank God for a community like this and for this technology. This disease is SO lonely for those dealing with it...people just can't understand (thankfully for them!) and some shy away b/c they are uncomfortable. (VENT: his two brothers who he had been somewhat distanced from but had reconnected with prior to diagnosis have all but disappeared since he became ill....WHAT the HELL?)
Our story is that my dad was diagnosed 10/07, has slowly (?) progressed to the point he's at now and I really need to hear from people who've been through this whole process already. We are just clueless about what's to come and I would really like details even if we don't know 'exactly' the path my dad will go.
He's bedbound but can use his arms/hands somewhat, he can talk but it's getting worse, he can swallow but as of two days ago he's started to have 'increased secretions'.
My questions: What are these secretions from? It's saliva but is it b/c he can't swallow? How then can he swallow the liquids he's drinking? He continues to drink. He takes lithium, for depression mainly, and that makes him very thirsty. My mom has said that it's getting scary b/c of the secretions and his cough is barely non-exsistant. He has a strong gag and we're afraid to use the suction that he'll aspirate. He won't let her suction anyway. He's so so miserable, depressed, nasty and I can't blame him but it makes it so hard for my mom, his primary caregiver. What's next? The meds they gave him for the secretions are from the 'comfort kit' (he's in hospice care)....Does this mean anything significant or is this just part of the deal and we'll go on and on from here? What can we expect? Or is this still impossible to answer? Maybe, if anyone has been through this, what was next *in your case*?
I'm going to start a new post about bipap just to keep things separate...there's just so much going on and I'm struggling to deal...I have two small kids and wish I could do more but dad won't allow me to do anything beyond a tube feeding or pouring a drink.... My mom's been burnt out but mainly b/c of his 'personality'...he is *difficult* beyond words...There are those that tackle this with grace and dignity and then there's my dad! Love him but it's just SO him to be like this.... none of us is surprised! Please don't see this as badmouthing my dad or coming down on a PALS...I promise I'm not! I have so much stress for him and his mental suffering...I just wish there were something that could help ease his mind, calm him, alleviate ALL the anxiety he's lived with since diagnosis........

Wow, long long post....and all over the map! thanks for hearing me and for anything you can offer!
~Susan
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Old 04-25-2009, 03:19 PM #2 (permalink)
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Susan ... I'm so sorry about your dad, and the grief he's giving your mom and you. It sounds like he was always a feisty guy, and ALS certainly doesn't improve anybody's disposition !

Part of his anger could be attributed to ALS, and there are meds to treat it. ALS affects emotional expression just the same as it does muscles and nerves. Patients can have very intensified and inappropriate reactions, and lash out or get weepy or start laughing strangely, and it has nothing to do with the situation. It's the ALS. This is not only very hard for caregivers to deal with, it impacts the patient's care, also, as caregivers are less likely to try to nurture someone who is being a pain in the butt.

Ask his neuro about some meds to help. This condition is called "emotional lability," and is common with ALS. Once the lability is under control, he will be calmer and better able to come to terms with his diagnosis.

As to the secretions: Yes, automatic swallowing does slow down with certain phases of ALS, and saliva also increases ... a bad combination. There are meds to handle this, too. Another thing that may happen is that his saliva will thicken and he may drool, because he can no longer close the muscles of his mouth well. This is distressing for the patient as well as unpleasant for caregivers, but there are remedies that will help somewhat. If he calms down and is able to cooperate with his caregivers, suctioning plus meds can make this less of a problem.

Good luck to you all. God bless you and your mom for taking care of him so well. Make sure your mom gets rest and some "away time."
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Old 04-26-2009, 08:50 AM #3 (permalink)
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Thanks so much for the reply... After I posted this I went and read a 'venting' thread where some PALS were feeling hurt by CALS venting and I felt SO GUILTY about this post. It's important that everyone understand that I LOVE LOVE LOVE my dad and FEEL SO DEEPLY SAD that he's suffering and I completely and totally understand why he acts the way he does... I thought this would be an okay place to talk frankly b/c I can't to friends or other support people as I know they'll think I'm cruel...Now I feel like my post could've hurt feelings of those suffering this cruel disease and that makes me want to bury my head in the sand .... *deep sigh*
Mainly my dad 'gives it to' my mom...not me. When I bring the girls around it *is* a light in his life and I do this daily for that reason. It's frustrating for me b/c I'm watching my mom (who also has MS by the way) struggle to care for my dad physically, she's as stubborn as he and neither will let me do much ...(I try to vacuum, empty the dishwasher etc etc when I'm there!). My mom would never take 'away time' in the true sense - like repite care or something - b/c she'd be overcome with guilt. She gets her hair done and my dad jokes 'I'm dying and you're getting your hair done'..So that's what we're up against! My mom does have help in home health aides through hospice, praise the Lord. They're worth their weight especially one who is a man and can lift dad (the only one dad will 'allow' to lift with the hoya- sp). Unfortunately for everyone, including him, my dad is just. plain. bitter.
Which brings me to the thoughts you expressed about the emotionaly lability of ALS. I'm aware of this aspect of the disease and have given it thought but I really don't think that this is the culprit here. My dad for his whole life has tended toward negativity and depression and he just seems to be following that curve...If ALS isn't enough reason to feel this way then nothing is, you know? This behavior is almost exactly what I would predict from him. He's a control freak, debbie downer type...not a good combo with ALS! My mom actually balances him perfectly and she will often say things like "do you think I'm surprised by this...near 40 years of marriage have prepared me to deal with this and make it through" So probably I'm affected more than her! Dad is also hilarious, life of the party, charismatic guy too, by the way! Just not as much with the ALS. His sense of humor can be brutal too...side story: When he was inpatient for his feeding tube, the docs were rounding with a bunch of residents and fellows...a whole crowd to oogle ALS and the effects it has a neuro exam..this is what happens at a large teaching hospital, right? Anyway, he asks the attending "hey, they call this Lou Gehrig's disease, right?" doctor is very serious "yes, sir" ..DAD: "when was he diagnosed?" ...doctor: "1939"..... DAD "right, 1939, and you guys haven't figured *anything* out in 70 years?!" He has tried many depression meds and they 'help' but don't alleviate completely these feelings... He's had the most luck with lithium...He sees the physchiatrist monthly through a home visit. Everyone, including the ALS clinic NP who's seen him throughout, agrees that it's 'personality' over disease....You should hear the pep talks that NP has given to dad! I truly can't blame him but it's tough, you know?
Luckily I have the girls and they put a smile on his face...even if only briefly.

Thanks for the info on the secretions...he's on scopolamine patch and that seems to be helping for now. If he truly needs the suctioning then I'm sure he'll let it happen.
My mom, a nurse, was just very distressed by it and that concerned me. I want to know if this is a 'biggie' as far as distressing things that happen or if there are a lot of things we just don't know that will be coming down the pike. My mother's been dealing with all sorts of positioning, pain, toileting, hygiene issues and nothing phases her so to see her upset by something was disconcerting. I wasn't there when he was having major problems with this but mom said it was 'awful'....not a word she uses a lot even with everything else going on.

Sorry for the long post, grammer issues and run-ons.... Thanks so much for reading and helping...
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Old 04-26-2009, 11:37 AM #4 (permalink)
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Hello there, i just wanted to say that you are very courageous to give research, inform, and seek out information the way that you have. I know that we did the same when my mother was initially diagnosed. It may also help to gather up people and educate them on the changes that your father is going throught and the need for them to come and spend time with him. ALS heros are quickly losing control of everything else like their bodies, that they need to maintain control of something, this being their demeanor, attitude etc. Interview your father, record his voice, when he no longer is able to verbalize his voice and "personality" will be missed, even if it can be challenging for others to be around. My mother passed away a week ago today. I have one recording of her voice that has helped get us through the past few days. It had been 14 months since I had hear her voice, and through it a glimmer of her personality. On a different note, in my mother's case excess fluids and secretions were a problem and constant suctioning was how we dealt with it. Later on she resumed taking Lasix which she had taken for unrelated Congestive Heart Failure a few years before. The lasix helped the secretions, but the challenge was frequent changing and an even more "weak" feeling because all the fluids were being pulled out of her body. We supplemented with Potassium. You and your mom will be in my prayers that you will be blessed with strength, energy, wisdom, and patience. Likewise I will keep your father in my prayers that God will provide courage and comfort.
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Old 04-26-2009, 03:29 PM #5 (permalink)
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Susan,

Don't feel bad about your post. You did not come across to me in the wrong way at all. Hope you, your mom and dad can find more bright moments along the way.

momismyhero,

Very sorry you lost your mother! Thank you for those wise words.

Good luck to y'all!
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Old 04-27-2009, 02:09 PM #6 (permalink)
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Thanks CJ. This is just so tough....

momismyhero: thanks for your kind words. i'm so sorry for the loss of your mom. we do have a tape of my dad but it's the answering machine! his voice is already too gone to record it now...

thanks everyone!
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