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beaner1

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Messages
58
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CALS
Country
CA
State
Alberta
City
Redcliff
Hello to all.
I have some questions that I hope someone can help with. Last Friday, my husband had a heart attack (DX 2 1/2 yrs ago) - he's 47, and has never had heart problems before. It started with him not being able to breathe well - by the time I got home from work, his eyes looked like someone had blackened them, his color was just awful, and breathing was such a struggle! We called the ambulance and he was admitted to ICU - that's when we found out he'd had a heart attack. He is still hospitalized - they have moved him out of ICU into palliative care floor, and are treating him with meds for his heart and for the pneumonia he picked up while hospitalized. The doctors are avoiding me like I have the plague - can't get any answers! The nurse said that they won't be running any tests any time soon regarding the heart attack - they don't feel he's treatable (!).

He has really had a set back with this hospital stay - he shakes so bad, is so weak - especially his hands and arms - that he has tremendous difficulty eating - we've been feeding him just to make sure he eats. He can't go off of his BiPap - can't catch his breath - and is getting oxygen too. Prior to this, he only used his machine for sleeping. He is in pain - shoulder & neck ache, and his feet, ankles, and knees are sore. His one ankle - the nurses withdrew blood from it to check something or other - is so painful he cries when we try to adjust his feet when he's uncomfortable (which is a lot!). My daughter and I have been massaging his feet, ankles, legs - they are so swollen and misshapen! It does give him a little relief. The only thing he gets for pain is Tylenol. But his breathing is what's worrying me so much! It is such a struggle for him - I'm really scared! The admitting doc in emergency asked him about venting - my husband has refused it.

My husband has progressed quite rapidly since last fall - cannot walk, hands are atrophied, voice is very weak, and breathing is laboured.

I feel that the hospital has just put him in a room to die. My kids and I aren't hopeful about the outcome of this either. How bad is he? He's been talking about dying a lot - told me he wants to be buried in his Firefighter uniform, has told our son that it's up to him to walk his sister down the aisle when she marries - lots of things like that.

What can we do to help him right now? Especially to ease his pain - I can't stand to see him in pain!
Beaner
 

brooksea

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Sep 27, 2006
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HM
beaner,

I'm so terribly sorry! Why can they not give him anything for pain? Sounds so insensitive!

I am not familiar with the way Canada runs their health care system, so I'm afraid I cannot offer any advice in that respect. Maybe AL can.

I just want you to know that I am praying for your husband and you and your family.
 

Icanmanz

Senior member
Joined
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947
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PALS
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Uni
State
Texas
City
Tomball
Hi beaner! God bless your family. I know what you are going through right now is very, very painful. I hope and pray to our Father that He takes care of your husband the best way He can. What can we say about Als? We know it is untreatable. You said his docs are avoiding you. Do they know something you don't? If I were you I'd ask them to be up front with me. Let's say if your husband is near his final days, why aren't they telling you? Are they just letting him lay there? Are they giving him anything other than Tylenol? I hate to say this, but it sounds like his time is near. This disease is so bad. There are a lot of folks out there dealing with this damn disease that do not know what to expect at the end. I felt the same way with my son. I guess I was blessed, because this is how I knew that my son's departure was near. It was on a Saturday afternoon, he was alright during the day, earlier. He sent me to the store to pick up a few things for him. He even asked for a newspaper, and a Truckin' magazine. I went to the store picked up his things. Gave him his paper and magazine. He read his paper, he could still move his arms very little. He went through his magazine. Then he told me he was tired, and needed to nap. He took a nap. When he woke up, he asked me for some coffee. I gave him coffee through his tube. Then he asked me to wipe his face with some facial pads, well I did that. Then he asked me if I could trim his finger nails. I said of course. I trimmed his nails nicely, and filed them to make them look nice. (Little did I know that I was doing his nails for the last time.) 2 hours later he napped. He was asleep when I decided to move his legs around a little bit. His feet were ice cold from the calves down. I mean they were cold. I thought to myself this is it. I tried to wake him up, and I couldn't. It was like he drifted into a deep sleep. I called the ambulance, they told me his time was near. The rest of it is in my earlier posts. My baby left the next day at 5:50 pm. He was sorrounded by family, friends, lots, and lots of love. I thanked my Father when He ended his suffering. I had to let him go. It was painful. You would not want your loved one to lay there suffering. Pray to God that it happens with dignity, full of love, and very peaceful. My son passed at home, that is what he wanted. May he rest in peace. I will be praying for your husband, and your family. God bless you all.

Irma
 

sharona

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il
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joliet
Hi Beaner.
I am praying for your husband & your family. It is very hard to watch the one you love suffer. Tell the doctor you want to know exactly what is going on. God Bless all.
Sharon
 

vmd

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idaho
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I echo what the others have said. I will keep you and your family in my prayers.
 

CindyM

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New England
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Hi Beaner. I am not familiar with Canadian Helath care either but I wonder if the Hospital has a social worker? Maybe he or she can set you up with Hospice. These folks make clinical assessments and determine how long a person has, so if there is anyhting to be done for your DH they will advocate for you.

Also, what ALS clinic is he seen by? I wonder if their Social Worker can help intervene? I wish this weren't happening on a weekend!
 

givenin

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Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
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b.c.
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salmon arm
beaner1 try the ALS clinic Dr. I have found out the HARD way that there isn't much knowledge with regulaur Dr's. on how to treat ALS patients, let them know what is going on and they should be able to work together or give better info on how to treat your husband or at least esase his discomfort. Hang in there and remember the squeaky wheel gets noticed.
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
Thanks to everyone for the help and good thoughts.

Irma, thank you so much for all that you've shared with those of us in this forum - I can't imagine how you survive the loss of a child - I don't think I could. I can't stand what is happening to my husband, and my kids are the only thing that keep me from losing it - can't even cry - I'm scared once I start, I'll never stop.

Givenin, we had initially gone to Dr. White's clinic in Calgary - they are wonderful, of that there is no doubt, but the trip was too much for my husband, and for a very long time he was in denial - angry, refused any type of treatment, etc. We've been struggling to care for him by ourselves for a long time.

I have been given the name and number of a good doctor here who has dealt with ALS patients in the later stages, and I am to call him tomorrow, and hopefully, he'll help us - cross your fingers cuz there really isn't much else for us here.

I am so thankful that I found this forum - it is truly the one place I can go, and get information, vent, or ask a question - thanks to all who keep it going, and all who reply to those in need.
Beaner
 

givenin

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Joined
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Messages
109
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PALS
Country
CA
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b.c.
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salmon arm
I understand all to well. We live in B.C. but are in the Calgary catchment area, easier to go to Cagary than U.B.C clinic. Staff there are great and very helpfull and the support was great. My husband reacted the same way, pretty much still is. Problem is we are still at least 7 hours either way from both and I read what I can from here to stay on top of things and we keep in touch with Dr White and staff who help us where they can or direct us to what we need.
Will be thinking of you this weekend take care.
 

northerngirl

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Joined
Jan 9, 2008
Messages
106
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Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
beaner1 , So sorry to hear about your husband. Like you didn't have enough on your plate! Call Dr. Whites office as soon as you can. leave a message that you need to talk to someone. I agree most Dr. don't have a clue or think they know everything and are phoning someone behind your back to try and figure it out. You need to be talking to a ALS specialist. Mom saw Dr. white. She's been to Bonatti in Florida, Scripps in California,
Vancouver, Kelowna, And has seen as lest 9 specialist mostly neurologists and a few neurosurgeons and thinks Dr.White was one of the best. Dr. White's office will be supportive for you. And they will want to know what is going on. They will tell you why he is not on pain killer. They will get answers for you, and when he's feeling better ( I am praying he will too) They will be of help to both of you.
 

MamaSara6

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Apr 3, 2007
Messages
24
Reason
Loved one DX
Country
US
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GA
City
Alpharetta
I'm not hugely experienced in this area myself, but I did discover when Mom was in the hospital for her PEG that the staff is just clueless when it comes to ALS patients. We refused to leave her alone because they couldn't comprehend the fact that she was essentially paralyzed, especially when she walked into the hospital w/ a walker the day before. I wouldn't be surprised if the heart attack caused your husband to fall off his "plateau" and get much worse than he had been, like my mom. I'm so sorry you have to go through it this way. I would talk to the drs. and make them talk to you. And make them give him something to keep him comfortable! He shouldn't have to suffer so.

God bless your family. I'll be praying for you all!
 

Peg B

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Messages
414
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PALS
Diagnosis
10/2006
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US
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Michigan
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Flint
HI,

Most people don't like to cause a scene, but you may have to. There are many ways a doctor can be unavailable, so you may have to get the message to them that you will not go away or "calm down" until you can talk to the Dr., get better pain control and be heard. Then when the Dr. comes you can be your calm nice self and get some answers. We are very socialized in the idea that Drs. know best and that we must accept what those in authority (the medical community in this case) say, but you are all suffering more than it seems you need to. The Drs. may be scared in that they do know very little as to how to help your husband, assure them that you know ALS is very difficult but that pain relief is most important right now.

You are all in my prayers. Sincerely, Peg
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
Thanks Peg and everyone else.

I did get good news today - I finally talked to the doc that's supposedly in charge of his primary care - he had no clue of his history etc. but have straightened that all out. I also have got him to give my hubby pain meds and it's really helping. I was also in touch with a palliative care doc who has worked with many ALS patients and he is going to consult with the primary care doc and is calling in a neuro too, then we will have a family meeting to come up with the best form of action for care for hubby - such a relief! The palliative care doc comes very highly recommended - I quote "he's an angel, and a real advocate for patients" - that's good enough for me! The pall. care doc told me when I spoke with him that his primary concern is for the patient - to keep them pain-free and to get them home if at all possible, but only if there will be the care that's needed. He's a "no B.S." kind of guy - exactly what we need.

I feel like a thousand pounds has been lifted off of my shoulders! Now if only I could sleep for a week!
Beaner
 

Jamiet

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Learn about ALS
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Louisiana
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Carencro
Lithium

Why can't you give your hubby lithium? I don't know if it's bad for the heart, and heart attack, but it seems to be working for just about everybody else.

I would start him on it if the heart issue will allow, it seems to be delaying / stopping progression or at least helping for a majority of people on it, including imporovments.

If it were my hubby, that is what i would try first.


God bless you, we are here for you, we know this is tought.

Rgds,

Jamie
 

givenin

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Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
You have to speak out or they will pass you by, the Dr. in Emerge left my husband sitting in a wheelchair for 3hours, no fluids no neck support, we had admited him in the hospital to avoid that. We were worried he had Pnemoina but he had to go through Emerge to have tests done. I left him with his brother to go help our kids and came back to find him in distress, he was dehydrated hungary and couldn't hold his head up and the Emerge Dr. didn't even want to talk to me and when he did was mad at the way we had admited him said he was fine. Boy was I mad, said is this how you treat a dying man and this was what we were trying to avoid and if you need anything else we will be upstairs in the room he was admited to and took him out of there on top of that there were 2 ambulances waiting to unload 2 senoirs that had been brought in. When the test came back he had a bladder infection and was dehydrated and brought him home the next day feeling much better after I.V and antibiotics. I hate to think how long we would have waited if I hadn't spoken up.

I still get ried up when I think of it.
 
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