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FayRay

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Joined
Feb 3, 2017
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3
Reason
CALS
Country
CA
State
British Columbia (BC)
City
Vancouver
Dear fellow caregivers, my first online support group post. My spouse was diagnosed with ALS in 2015. We started to notice fasiculations in his upper arms and shoulders. Then he had a couple random falls when walking out in the community. We went to hospital for he did not have a GP. They then sent him to specialist, then ALS clinic where they basically said he has three of the four signature symptoms of ALS.

We did not lose hope, we pushed for 2nd opinion from neuro surgeon, he said he could repair my husbands old cervical spinal injury from car accident back in 1999 which he thought might be causing the worsening nerve pain and fasiculations. ALS clinic staff stated the my spouse could have the surgery, but he will still have ALS. April 2016, he had surgery, been in recovery ever since.

Had prodisc c 2 level vertebral replacement through front of neck. Massive swollowing problems since, not really improving but getting worse. He speech is getting worse too. He cant eat or swallow properly. Hes lost so much weight, he has lost so much muscle mass, hands getting weaker, he has developed a chronic cough and recently developed bronchitis and on antibiotics which he cant swallow properly.

He is losing hope, tonight he was so frustrated for he could not swallow his meds with milk. He got angry, grabbed a kitchen knife and said he wanted to die, repeated it over and over. I feel so helpless. He is suffering and scared and so angry.

I said I would call 911, but he got more upset. Dont know what else to do, have him hospitalized against his wishes or leave him to run off and kill himself for he does not want to go on like this anymore. I need some guidance and support for nobody in my life right now seems to care what is happening to him or us. Very depressed and powerless right now.
 
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Fay,
I'm sorry to hear that you feel alone. Your husband probably feels powerless as well. You know him better than we do. Do you think he will really want to die tomorrow, or was that all more a cry for help?

Has he considered a feeding tube so he wouldn't have to swallow? For some people, that would help them feel more in control. For other people, the opposite. Have you discussed it?

Meanwhile, have you tried spooning applesauce, yogurt or pudding with a pill in it, instead of milk? Most abx capsules can also be emptied into one of these (check the label or the do not crush list, or ask), so he doesn't have to swallow the outer part.

I don't think, honestly, you want to hospitalize him against his will, nor leave him. So we will try to help you help him as best you can. But fair warning: from your description, what helps him the most at some point, one perhaps not too far down the road, may be part and parcel of the best passing he can have.

Best,
Laurie
 
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FayRay, I'm saddened and concerned by your situation. Laurie is absolutely right. I crushed pills into applesauce for my wife when she had ALS. Seems to me that the Canadian government would pay for a feeding tube, too.

One of the hardest things for many people to do is to understand that their love one is going to die. We don't get a choice in that. But we can influence the manner of dying. Certainly nobody wants to die in anguish. I hope that your husband is able to get a feeding tube soon.

You should bring this up to your doctor or a counselor. Perhaps someone there can examine your situation and find a good resolution.
 
Fay...I'm so sorry about your situation. You are not alone here. I am the main caregiver for my younger brother who was diagnosed in 2015 as well. He has moments of fear about what's to come and has a good cry but I've noticed as the disease progresses he has seemed to wrap his head around it a bit more. He has chosen no treatment. No tube, no meds. Nothing. His choice but makes it hard for others to watch. Has your husband decided no feeding tube? My guess is he just had a bad day and was frustrated over the pill. I know how hard it must be for you Fay. Just encourage him to enjoy what he can still do. Going to get a power lift recliner today. Brother doesn't want it but he's getting it anyway! I'll be sending warm thoughts your way. Please read this forum. These people have helped me immensely.
 
Fay, I am so sorry. This is just such a heartbreaking disease.

My husband has had a very positive attitude for three years, but as his hands fail him, he is have a lot more difficulty dealing with thoughts of the future.

I think one of the cruelest aspects of this monster is considering the choice to live longer or die earlier that our PALS deal with. Knowing that they will lose the ability to take things into their own hands, so to speak, is horrifying. These are things no one should ever have to consider.

Much love,
Becky
 
Dear Fay,

I can truly understand the heartbreak and feeling of being powerless because all of us CALS have felt this but know that we will be here for you.

I agree with what others have said about considering a feeding tube. If your husband is able to eat and drink by mouth, the tube could just be used for medications at this point. If you search the forums you will find many discussions about feeding tubes and most agree that they help with quality of life for our PALS. My husband was losing weight very quickly before he got the feeding tube and he has now gained all the weight he lost.

Another thing that has been helpful for both my husband and myself is taking a low dose of antidepressant medication. We were both very resistant to this at first but now I see how depressed I was before starting the medication and how much better I am now able to handle this beast of a disease.

I don't think hospitalizing your husband against his wishes is a good idea. Our PALS have lost so much control and to take away this decision about what they choose to do would be really cruel, in my opinion. There are PALS who want to do nothing and just let the disease run its course and PALS who want to do everything possible and that is their decision to make. I think you need to tell your husband that you will support whatever decision he makes, even though it may be painful for you.

You and your husband are in my prayers.

Sharon
 
So sorry to hear about your husband. ALS is such a horrible disease. It sounds like you husband has had an incredibly difficult time due to the other health problems and the surgery he already had.

My PALS had the feeding tube put in in Sept '16. At first he only used it for water. He has bulbar onset and eating took so long and was such a chore that a few months later he was taking all his nutrition through the tube as well as all his medication. We just have to make sure that all his medicine is ok to crush. This would eliminate his pill taking issues if he was up for the feeding tube.

Also, what about hospice? They may be able to give you some much needed help and support for you and your husband?!

We are all here for you. I hope things get better for you all soon. This is such a horrific disease that no one should have to endure.

HUGS!
 
It sounds to me like he was just very upset, not in a place to be making actual choices about treatment or care let alone life or death. I am not sure what the Canadian set up is, but can you talk with an ALS Specialist together about choices/next steps? I know regardless of what he decides, he does not need to just sit and cough and be unable to swallow at home. It sounds like a Peg would be a huge improvement for him as others here have said.

I know each and every step of progression feels wretched to watch, let alone dealing with what you described. Thinking of you.
 
Hello everyone,
I am joining this thread as a PALS, there is a lot of opinions here and I am sure they are all from the heart, but no one can tell what an other person is thinking. From personal experience I know that at times what you say is not necessarily how you feel and is not what you want, but your CALS may think it is. I know that a lot can be misunderstood and cause serious problems just because the CALS thought they knew what the PALS was thinking and wanted or meant.
I would suggest that contact with a GP and an interview may help enormously, after a face to face interview should result in the administration of an antidepressant that will greatly improve the situation. This will probably make the PALS easier to understand and give the CALS a better understanding of what the PALS really wants.
Personal Experience
Al
 
I'm so sorry to welcome you here, especially in such crisis.

Does your husband have a living will? This is critical so you can advocate for him in a crisis such as you described, and work with him according to what he truly wants, not how he is reacting to a particular situation.

At the end of the day he has the right to all choices.
However he needs to make his choices very clear so that they can be honoured.

It is incredibly difficult to witness such distress. You have many choices besides forcing him into hospital or just leaving him to it. Now the crisis evening is over, please see if he will see his doctor with you, or the clinic, and discuss strategies.

Some PALS will choose no interventions, and as a CALS we can honour this without either losing dignity. My PALS made many choices that I did not agree with, but I stood by his right to choice and advocated for him.
 
Thank you so much, it was a dark night. Had some clearer conversation about it today. He does not want any interventions if his body begins to fail, it is just so hard to watch and not be able to help. He is so fiercely independant and a stubborn stoic Albertan. I am glad I came here, you have all been so supportive to a stranger in crisis, much love to all. Thank you
 
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You truly are welcome, we get it.

I'm not sure what you call a living will in CA?
I'm in Australia and we call it an advanced health directive.

So important to sort the legals so you can help him through the dark times, and it will help you feel your feet stay more or less on the ground.

Now you have reached out, don't stop, keep talking here xx
 
Fay....As I stated, my brother is also choosing no intervention. He is also sooooo stubborn. Did his own laundry going up and down stairs on his bum. He knew once he stopped he was done. He no longer does the laundry as he can longer walk without the aid of his walker. The hard part for the CALS is watching the struggles when you know that there is something out there to help with certain issues yet they want no assistance. We even had a bit of a tiff over a power lift chair until he made me cry. I purchased one yesterday anyway. He'll either use it or not. He absolutely refuses to pay for anything like the chair as he says he won't be around long so why waste money. Very frustrating but all I can do is just trudge along day to day and enjoy the days he's enjoyable. Thinking of you Fay.
 
Believe me being a person who suffers from depression that her husband definitely means it when he said he wants to die. He is seeing no way out to this situation. I think she immediately needs to get in touch with her husbands doctor to find out what can be done to keep him from taking his own life. Maybe, the doctor can encourage him to take some antidepressants? I would try to get him to consider the feeding tube but ultimately it has to be his own decision. This is a very heart-breaking post to read. The only other thing I can think of that she could try is possibly try to have a pastor if she belongs to a certain church talk to him.
 
Kim (Skipper), I don't think we can safely presume what Fay's husband's ultimate wishes are, nor that emergency intervention is called from, from afar. From her second post, it sounds like they are talking about it, and she will do her best to support his wishes, and that's what counts.

Best,
Laurie
 
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