Help!

[missakian]

My husband was diagnosed with lower motor neuron disease exactly a year ago, about 4 months ago it was changed to ALS....however now there are two diseases...ALS and drug addiction....He has been taking tons and I mean tons of pain meds...morphine, larazopam and oxycodin....he says he has to take them for all of the pain...along with those he has baclofen and gabapentin...and he has a history of dependency on drugs and alcohol...The pain meds have suppressed his appetite, and create the same symptoms of ALS.
His internist says he is walking a fine line with him because he says he has so much pain but I am convinced if he weren't taking so many narcotics his condition would be much better!
I cannot imagine how he will ever get off these drugs without being hospitalized...He has not taken his diagnosis well and says he won't live in a wheelchair or use a breathing machine......what do you do when someone won't fight back?
AG

 

[Ms. Pie]

You can't make someone fight it. It is all up to him. I wish i had some encouraging words for you. You have my sympathy Sweets.

 

[Jennifer D]

Hi Missakian,

I know you stated in your post that your husband has a history of dependency, but please understand that my husband has no history of dependency and all he asks for is painkillers. He is in so much pain it makes me sick and the most his doctor gave him is tramadol. I sometimes wonder why most doctors don't give something for pain, why should they suffer?

My husband is strong willed and never complains and to see him struggling in pain is sometimes more than I can bear to watch. Please understand that no one can take the diagnosis of ALS well.......after all who wants to accept the fact that every human dignity will taken away a little at a time? Not to sound funny, but I think I would rather be out of it on painkillers than deal with the horrible reality of ALS. Give him some time, hopefully things will get better.

I know this is all so overwhelming, but take a step back, and take it day by day. This group has been a blessing for me and I pray that your situation gets a little better. You and your family are in my thoughts.
Jennifer

 

[vzandt]

Ms Pie is right. You cant make them do anything. Jennifer is right to. The future looks pretty gray. Your husband has a difficult road to walk. The only thing you can do is walk beside him. Hold him up when he falls. Love him when hes unlovable.

 

[poppy62]

My hubby is refusing everything...and it's so hard
Thinking of you...

 

[missakian]

Jennifer...reading what you wrote makes me feel like the wicked witch...my husband was barely awake this morning and wanted to take some of his pain pills, then wanted me to count them over and over...he was soaking wet and had to be changed but his big concern was to make sure he had enough pills until wednesday, which is when he gets his refills. It is so hard to separate the disease of ALS with his drug addiction....I got so angry with him, I feel like a monster somtimes!

 

[HelenL]

missakian, you're not the monster, ALS and drug/alcohol addiction are... you're just trying to keep your hubby alive and well.

My hubby has been in AA for 9 years now, has yours ever tried that route, or was it still denial? If he was, maybe he has a friend or mentor that could come and visit with him. Not sure if he was drenched in sweat because he's starting to detox, but it can be pretty ugly on some of the meds you mentioned, I just saw a friend of hubby's get off of symbalta.

How is his ALS progressing, if he can still do things outside the house?

Good luck, and don't beat yourself up for being angry, you're only human.

 

[missakian]

He went to one AA meeting and said it wasn't for him...off and on for many years it was either drinking or pain pills and the pills were always his drug of choice..he has had a back problem for a long time, way before the ALS diagnosis..his present prescription regime is 56 larazepam, 56 percocet and 12 morphine pills every 7 days and he takes them all in various combinations...and that is in addition to the baclofen and gabapentin...It's hard to know how the ALS is progressing because of all the narcotics in his system...He is very weak, especially his hands and legs...he was a guitar player all his life (68yrsold) and not being able to play anymore is miserable for him! He weighs only 148 and is over 6ft, but eats very little...he will fall asleep with food in his mouth when I am trying to give him a meal. He wears men's diapers all of the time now because I don't think he realizes when he has to go to the bathroom...He doesn't want to do anything...I can't even get him to sit outside to get some fresh air...stopped reading, doesn't listen to music....his main focus is making sure he has his pills!
It is so hard to do so much for someone when they won't help themselves at all....If it were just the ALS I could deal with that and he knows that....I could clean his butt 20 times a day and be fine with it, if I thought it was the disease of als, but I know what these pills are doing to him and to his mind!
I am sorry for complaining so much, but this is tearing my little family apart..........He still has so much to offer our grandchildren and our children, but he is like an empty shell right now.
Thank you all for listening!

 

[cervus]

So sorry you're going through this. I know it might not be the point at the moment -it makes me mad when people prescribe medicines without thinking about the consequences. So many good words and such good advice from everybody. Glad you found this forum. Thinking of you. Yasmin.

 

[CGARS]

AG,
Feel so bad for your situation.
Without a feeling of purpose, there is nothing you can do to help.
You guys have been beaten up from every direction, I have no advice that can help.

I wish you all the peace and happiness in the world, and hope you find that purpose you so desperately need.

All the best,
Casey

 

[sadiemae]

I do think he is being over medicated too. My husband also has severe pain , and his primary doc is a pain specialist. His pills just got upped, but nothing like what your husband takes. Les can take 2 - 30mg morphine a day 3 - 1mg lorazapen((ativan) a day and 8- 4mg hydromorphone (dilaudid) a day. He is also on gabapentin and baclofen. The amount of percocet is what concerns me. Too much tylenol in that. Hydromorphone would be a better fit for him with pain. Also, my husband will not take the morphine very often, as it really messes with his stomach.

 

[missakian]

S...thank you so much for your input...I cannot understand what his doctor is thinking...if he could live with my husband for 2 days he might feel different....the good thing, he is retiring next month. Our doctor has even told me that none of his other patients take as much pain medication as Tom does! I would love to hear more about your husband and hear where he says his pain is coming from......
thank you
A

 

[sadiemae]

My husband has degenerative disc disease in his back and neck. He worked very physical jobs his whole life, and had pain before ALS. He also worked with ALS for a year before his DX. He is now experiencing a lot of pain in his hands. Also has hip pain.

 

[ltbeauti]

Wow. That sounds like an awful lot of pain meds. 56 pills a week that is 8 pills every day of just 1 of the pain meds. I have moderate pain in my legs. they get really stiff, but I try to control it with ibuprophin and Baclofen. I have an addictive personality and I am worried about getting hooked on pain medication. but if my pain gets unbearable I will take it.

Sorry to hear of the peeps on here who have loved ones that seem overmedicated. I know that you hate to see them slipping away into that NEED for meds that controls them.
keep on posting here and seek other help if you need it
In my thoughts ...

 

[Wings]

misskian, so sorry you are going through what you are. Continue to love him unconditionally, like you do ... AND look after yourself too PLEASE - you will need as much support, and perhaps on some levels even more support than him, as on all those meds, at a guess i would say they are 'numbing' him to the reality that you are experiencing daily.

Such a difficult situation you are in, as i also wonder if he is able to make decisions for himself on all those drugs. Ideally i would guess it wise to have him hospitalized to 'detox' him and break the vicious cycle it sounds like he is in... I think, only when he is of sober mind for a reasonable period of time that he could possibly make informed, real choices for himself.

I wont go into any great detail - but in summary -my father was on very high doses of morphine daily (it built up over time) due to severe pain with secondaries of cancer in the sacrum/spine... on hindsight, he did become drug addicted with his primary disease -cancer - and overtime he needed "more' each day ( i think they build up a tolerance) He was hospitalized for approximately a month and i know that it was like getting "my father back" from la la land... interestingly enough too he could not remember alot of the previous 8 or so months.. im not sure what the hospital did (it was many years ago and i was in my teens) but they did manage to get his 'medication' sorted to a point that i know my father was 'sober'. Things did of course change again not long before he passed but at least we had him back for a while - well at least that what it felt like.

I think for your own peace of mind, to know your husband is making 'sober' informed choices would be a relief. And even that is a hard one, as i have (with time) changed my mind/heart on several personal "issues" regarding my own feelings concerning physically disability....my first reaction was like your husband - there was no way i would be in a wheel chair.... but i have since changed my mind/heart with all the possible ALS outcomes... and as much as i am searching for therapies to improve my future prognosis, i also try to keep in the "NOW" living loving and learning.

If i were in your situation, i would be knocking on his doctors door and asking him for him to admit your husband into hospital. You cannot be expected to have the medical skills to cope with the situation you are in.