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NothingButLove

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I really, really wanted to be an active member on this forum. Around September of last year, my wife has wanted me by her side all the time. The depression, stress and physical fatigue brings me down. The lack of sleep just destroys me. I just couldn't find the time...

I've seen posts saying that as CALS, we must respect our PALS wishes regarding end of life. Up until this point, I've always treated any talk about my wife ending her life as a sign I need to up my game. I've been with my wife 26 years and I know when my wife is serious or just depressed. The problem is, I'm pretty sure she's serious now. I've tried all my tricks to change her mind. Finally, I brought up her mom's 80th birthday. She looked distressed as she shook her head "no". I asked her if it upset her when I tried to convince her to stick around. She said "yes" and started crying. I then asked her if at any time she was close to changing her mind. She said "no".

My wife has progressed so much since December. At that point, she had already lost both legs, her right arm, her speech and she could only eat using the feeding tube. During mid December, we had to start using the cough assist machine. Her saliva got so out of control, we couldn't go anywhere. We got that under control with Glycopyrrolate. In March, she lost her left arm. The difference between being able to use one hand and forearm versus being fully quadriplegic is huge. Then the bowel problems started. She can't go now without an enema and needs to wear a diaper all the time. As of mid April, she has needed the vent. She's had it since August first of last year and never used it except for a couple of weeks. And finally, this week her tongue turned white with thrush. Hey, why not...

The real deal breaker is the pain. Her feet, back and butt keep her pain at level 10 (according to her). She's on morphine now which brings it down. I just got to laugh when I see an article that says pain isn't usually associated with ALS. How did we get so unlucky?

As it stands right now, my wife wants to refuse food and water through her tube after the Roland Garros French Open which ends June 10th. That means I have 10 full days left. I don't care how many posts I read about how starving to death isn't as bad as it sounds. I'm horrified.

At a recent doctor visit, I told my doctor that I can't give up. It's just not in my nature. He said you can't look at it as giving up. You have to look at it like the suffering of a loved one is being relieved. That's a tough pill for me to swallow.

Rob
 

Nikki J

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You have been in my thoughts recently. I am so sorry you are at this point.

Managed correctly she should not suffer. Do you have hospice or other arrangements for support during this time? 2 of my facebook friends chose this path this year at an earlier stage than your wife seems to be. One just died yesterday. In both cases their loved ones reported it seemed peaceful.

Of course your heart is breaking. You have fought so hard and so valiantly. This last gift is so very hard to give.

We will be here for you
 

wishmobbing

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Thank you for your raw and honest post, Rob.
I like that giving up is not in your nature. Your doc is onto something very real.

If you help your wife to fulfill her last wish that is the biggest gift you can make her. It is every shade of unfair that she's in a situation like this. You're quite the opposite from failing her. If it wasn't for your presence and help she would probably have given up much earlier.

No one expects you to let go of your love easily. Would it be easy to lose her after 26 more years? I don't think so.

I'm glad you found the energy to write your thoughts down and hope it will help you to deal with this.
 

ThisPresentMoment

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Rob, I'm so very sorry. It's OK that you're not ready. Even though my parents and I are very early in this journey, I already see that we are progressing through acceptance of different things at different times.

Following her wishes is not giving up, it's merciful.

I pray that you will have the support of friends, loved ones, and a medical team that will help you both through this. I pray that you will find also find blessing amid the heartache.

I can't imagine your level of pain. My loved one is a parent, and even soon after diagnosis, before the worst has come, my heart already physically hurts.
 

codyclan

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Rob,
My heart breaks for you. This is a rotten spot to be in. ALS is truly a monster. My husband just couldn't stand to have food through his tube at the end. It made him feel sick, bowels were an issue too. He also contracted thrush, which made him miserable. He ached and was physically uncomfortable, I am assuming because of the loss of fat and muscle meant there was constant pressure directly on his bones.

He gradually decreased his tube intake over the course of a few days. He continued to take water and tea until the day before he passed, after which time he was never really fully conscious. I never really thought of it as 'starving' because he simply wasn't hungry. I get this is hard and feels like giving up, but I tried to look at this as a choice over which he had control. And honestly, he was declining so rapidly, that I don't think it made much difference. On a side note, both my mother and step-mother passed from cancer. At the end, they just didn't really eat. A nibble here and there. A baby bird ate more than either did at the end. And yet no one forced food on them. I felt like my husband's choice gave him the dignity, power and control over his own life--ALS took so much, but I always tried to put him in control of all decisions related to his care. Sometimes I disagreed with him, but now, 14 months later, I feel like I gave him exactly what he needed--I treated him like the man he was -- right up until the end. And he didn't suffer. Hospice gave us the right dosage of morphine and he was at peace in the end.

My heart breaks for you and your family. She knows how you feel and you know that she fought hard for you too.
My thoughts and prayers.
Sincerely,
Tracy
 

lgelb

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Rob,

Of course, I know you know that it's neither giving up nor in, it's just giving her/doing what you can, as you always have. Not only is there no greater gift to your wife, but it is the gift that means much over time to the giver as well, to know that you were able to step up for her.

Since she has pain at a level of 10, her death need not be as prolonged as you envision, but of course that is up to you both.

We are watching Roland Garros as well. I hope her/your favorites are in form.

Best,
Laurie
 

Narrowminded

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Rob,

I’m sending you huge hugs. None of this is ever easy. Honestly, I don’t know how I would react if Brian asked for that. However, I know when he’s getting too much food it physically hurts and creates all kinds of issues. Try and think of it as a way to ease her suffering, not that you won’t when it actually happens, but you are giving her the best gift possible.

Others have said it much better than I can. So just know I’m here for you and holding you from a far. Praying for peace and comfort for both of you.

Hugs,

Sue
 

Lkaibel

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I am so sorry you are facing this. My husband has similar plans further out. She is not giving up and neither are you. The greatest gift you can give her now is to hold her hand and let her lead the way as you follow her path. Your love will give you the strength to move forward with her wishes.

Wishing you peace. We are here for you.
 

NothingButLove

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NikkiJ - Hi Nikki. I hope you're doing OK. I think about you too from time to time. I wish I could have been more active on the forum. We signed up for hospice about two weeks ago on 5/16. I'm really happy with the hospice team and doctor. It's a long story but the hospice doctor is actually my and my wife's PCP. He runs a private practice and also a hospice team at Vitas. I have complete confidence in him.

codyclan - Thanks for sharing your experience. I also assume that fat and muscle loss is causing my wife's pain. She's 5' 2" and normally weighed 100 lbs. She didn't have much fat or muscle to start with. The doctor just prescried a fentanyl patch. I'm hoping that will reduce the pain further.

Lauri - Where would everybody be without you. You have contributed so much to this community. Fortunately for my wife, her all time favorite player is Rafael Nadal. We attended the US Open back in September and she got to see him win the tornament. Here's some pics: pic1, pic2. I'm so glad we took that trip. That was around September 5th of last year. We didn't even think about taking the cough assist / suction machine. She ate normal food. She slept flat on the mattress in the hotel. Nine months later and we can't go to the movie theaters two miles from our house without an emergency backup plan.

Thanks to everyone else who posted in this thread.

Rob
 

Atsugi

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May I add Just a few thoughts? They're worth, of course, every penny paid for them. :)

Pain and New Onset ALS: While the new onset of ALS has no reason to cause any pain--ALS destroys the MOTOR neurons, and does not affect SENSORY neurons--I have heard of cases where when one muscle is made limp, it's counter-pulling muscle might be pulling in such a way that the sensory nerve is pulled/squeezed/painful. Not sure, but I think this is rare.

Joint Pain and ALS: Most of the reports of pain during ALS happen when a limb hasn't been moved in awhile, the joints can get stiff and painful. The treatment is for the caregiver to move the limb around, reposition it, run it through a proper range of motion "exercise" to relieve the stiffness pain. Get a Physical Therapist (who understands paralysis--many don't--to teach the CALS how to do ROM exercises.

Swelling Pain and ALS: Many reports of pain are due to lower leg and foot swelling. The body is divided into "pouches" which can pool fluid. With a firm and slow squeezing motion, a CALS can push the fluid back up the leg in just a few minutes. There are also massage "boots" that use an electric air pump to systematically massage the foot, lower leg, or even the whole leg.

Pinched Nerve Pain and ALS: Finally, after the PALS has lost weight and muscle tone, their bones just press against the skin and nerves. A rotating mattress (again, it's an electric air pump mattress) will move the pressure points around so it doesn't hurt as much as quickly. In a wheel chair, a properly inflated ROHO seat is useful.

Pain spots: Use Solonpas (OTC) patches, Voltaren (RX) gel.

Morphine: Don't be afraid of it. A little bit will relax the lungs, making it easier to breathe. A little more will relieve pain. Even more will relieve the panic of "air hunger. " For those who wonder about the legal or ethical use of morphine, it has been pretty well decided for years now, that because the purpose of morphine is to relieve the patient's suffering, you may increase the dosing as needed. At some point, you might find that the amount of morphine would be considered lethal. That is not a legal or ethical barrier. You may legally and ethically continue to increase the dosage as needed to relieve suffering, even if the result is death. After all, it is the disease that is killing the patient, not the caregiver's attempts to relieve the suffering.

I kept a full range of emergency stuff in a bag attached to the back of the wheelchair. Out of courtesy, I kept all my "medical emergency" stuff out of sight of my PALS, so she didn't have to look at it all day.

CALS like Rob, and me, and every other CALS, have a really, very stressful and time-consuming responsibility. It is sooooo tiring. It will lead to frayed nerves and even explosions of anger. It is not unheard of--maybe it's common--for a CALS to just want to end it all NOW! Those of us who have been there totally understand that. When you explode like that, give yourself some minutes to recover, and then get back in the game. Do not feel guilty--it happens.

I was in the military for 20 years, overseas, at sea, in real-world hot spots, and I never had such a hard and tiring job as being a CALS. In my military mind, I considered it my "mission" to provide my PALS with the least bad final year of her life--and also provide for the future of the surviving family at the same time. There ought to be a CALS medal of honor.
 

lgelb

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Rob,

Great pics! Thanks for sharing. Now knowing Rafa is her favorite, I understand why she is especially invested in RG.

Enjoy the tournament with each other and here's hoping for that famous bite...whatever comes after, you know her well enough to do all the right things. The only definition that matters, after all, is your love's.

--Laurie
 

affected

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When there is a lot of spasticity and muscle wastage there is pain - the tight wasted muscles cause a lot of pressure on the joints.

I've noticed when there is no spasticity, there is a lot of limpness and very little pain.

Every memory you have created and may still create is so wonderful, thank you for sharing some of them with us xxx
 

Sasha58

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I hear you .... my hubby suffers tremendously with pain and we repositioned best as we can....Sometimes he cries and asks for forgiveness for putting us in this position....what do I say ?? I cry too and I know that me and the girls will continue to be there for him.... he has never asked to withhold the peg tube feeding ... he is a virtual skeleton in the bed, and completely helpless
It’s. This beast of a disease is completely de- humanizing and unforgiving.....wishing the best for you and yours.... sounds like she’s ready.....
 
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