Five years in

[vltsra]

We've been living with ALS for five years. It has been a difficult road for both my PALS and me. He now needs help with just about everything. He has been telling me how hard it is for him; he cannot move his body, and it is hard for me to get him comfortable much of the time. He can't be without the bipap for more than a minute or two. I was without caregiver support for a long weekend this weekend, and it was hard; my back aches from the physical work needed during transfers and other duties. My PALS has always been a bit high maintenance even before ALS. Now he insists upon different supplements at various times during the day (which go through the feeding tube) and near constant adjustments and attention. He's at the point where he can't even scratch an itch which is frustrating for him and just makes me sad.

I'm trying to keep both of our spirits up but have faltered at times. He is impatiently awaiting news on Nurown; while I'd like to be hopeful, I have to say for a long-term CALS there are mixed feelings. Of course, we will be happy to try it if it is available for us, and I want him to have hope, but I do not believe it is touted as a cure. It may stop or slow progression, leaving him pretty much where he is now. Given the cost of multiple treatments, plus the continued cost of hiring caregivers for years, it's not hard to see how we will end up broke. Furthermore, if he lives another 25 years, I don't know how I will be able to be a CALS when I'm 80. I'm already physically and emotionally worn out much of the time.

ALS is such an awful disease. I do wish for hope for all PALS and CALS alike.

V

 

[affected]

I hear you. There are no easy answers on any side of this equation.
I hope you don't get too down when you falter, you are human too and you have your own valid feelings and physical limits to contend with.

But you are an awesome wife and CALS. I hate to say this, but as it is a CALS thread and for you personally I will - I doubt very much Nurown will suddenly be ready for him and keep him alive 25 years in this state. What the reality will be I can't guess, but let's take one day at a time and know you are heard and understood 💜

 

[lgelb]

I hear you too, V. And I agree with Tillie. You can't do it equally every day, but if you can help him get some joy from the day, you will cherish those moments when he is gone. They also bring him a perspective on what he wants and doesn't, near the end.

If you need any positioning suggestions for making him more comfortable, let us know.

Best,
Laurie

 

[Narrowminded]

V I hear you loud an clear. I remember all too well having them same thoughts. I fact I used to joke with Brian and told him if he wanted to go another 30 years he’d have to trade me in on a new model. He got a kick out of it, but boy was it the truth.

while I don’t visit here often anymore, all of you are always in my thoughts. When I see someone was set free it with mixed emotions.

Just know you are an excellent caregiver and you will make it.


Hugs

 

[ARCG]

V, while I don’t post very often I drop in and read threads for advice and I think you are an excellent caregiver facing this impossibly difficult disease.

i feel for you as we too have been in a long battle and at times I am just bone weary. Not too long ago I dropped and broke a glass and just started sobbing over that? Just needed a release I guess.

i know it’s a cliche, but hope you can arrange some time to do something just for you and take a much deserved break. Its so important.

Thinking of you,

Annie

 

[jonico]

Hi V,

Your heartfelt and honest post really hit home with me. My wife's time with ALS was a bit longer than where you guys are now, but your getting close. As much as I loved Nicole and appreciated having extra time with her, my day to day reality was just as you described above and I was near the breaking point as winter approached this year. I hit a wall several times in those last, most challenging 4 1/2 years of her 6 or so with ALS. I told her last year around this time I didn't think I could make it through another winter. We tried all kinds of ideas to change things up and lessen the burden, but nothing really changed. I experienced increased bouts of situational depression and would then bounce back.

I had those same thoughts you're having of 'what if this goes on for six or seven more years?'. I dreaded it. I wanted it to end, but wanting it to end was essentially like wanting my wife to die. I felt terrible about myself for thinking that. If we were wealthy and could find a reliable way for someone else to give her the quality of life I gave her each day for 2/3 to 3/4 of the time, and I care for her the rest of the time, I believed I could have gone much longer...but it just wasn't remotely possible. We had developed a good system between us and only I could adequately keep her comfortable most of the time. And that was often with another person helping me. Take me out of the picture to any degree and we'd need two other people to adequately care for her and give each other breaks.

What got me through last winter, and up until just recently when Nicole passed, was news early in January that our son and daughter-in-law were having a baby, our first granddaughter. I was then determined to 'bring Nicole to baby', and she was determined to "hold her". There were quite a few times during those nine months where she doubted she would make it to baby, especially when she was diagnosed with Type 2 Diabetes, and a new diet and new meds really messed her up. But we worked that out over some time and she pressed on.

Anyway, I'm not sure if any of this helps much, as everyone's situation is so different. I would just say that even though our specific day-to-day experiences and our PALS progressions were quite different, our personal/cALS feelings, hopes, doubts, weariness, guilt, anger, frustrations, etc. are remarkably similar. You are not alone. You are strong, brave and loyal. I wish I could offer solutions or actually help in some way...but I guess all I can really offer is encouragement. You're amazing to care for your husband the way you have for so long.

In the end, being here on the other side of it, my thoughts return far more often to all the sweet times we had these past six years and to the fond memories of our life pre-ALS. I think very little of how hard it was during the less-than-sweet times. Of course I have the resulting challenge of trying to find peace and a footing in my new life with close to half of me gone...working on that.

All the best...Jon

 

[vltsra]

Thank you for all of your kind words of encouragement. Especially you Jon, your understanding and your tribute to Nicole have just moved me so much. I'm so glad Nicole was able to hold your granddaughter. All the best to you going forward.

My PALS is outside in the sunshine with our caregiver right now, but he told me a moment ago when I went to check on him that he was getting weaker and nearly broke down. In spite of all of the physical difficulties it's the emotional hardship that really gets to me. Seeing him so down and struggling is the hardest part. It's difficult living with this chronic sorrow.

V

 

[jonico]

I'm glad your PALS got outside to enjoy some sun yesterday V! Your final point about the emotional hardship is so true...thinking about you guys today...Jon

 

[Scotiaspirit]

I hear you all. I know my wife has gone through a living hell trying to look after me. I had been keepping focused on fighting the disease. My symptoms started five years ago, and had three hospital stays since mid December 2019. I want to see my son get married and step grandson start school, etc, but I know she is tired, and I am tired. My body is losing its ability to fight infections. I am thinking about stopping Radicava and stopping gtube nutrition and taking the medical assistance in death. I am getting tired. Trying to prolong my life and being miserable, it gets tiring. I can understand cALS wanting to be over this, as much as pALS wanting eternal peace.

 

[jonico]

Paul,

I can't begin to express the range of emotions I felt reading your post. I've been out of the loop here for a while while caring for my wife, so I checked out some of your previous posts. Damn, you are tough/strong, as well as kind and supportive of many in this community...which means your cALS has to be comparably so. I greatly admire you both.

So...I am having trouble figuring out how to respond to what you wrote. I hope I didn't make it sound too much like caring for my wife was so hard it wasn't worth it. I can't begin to adequately express how the opposite is the truth. Given our journey, I so want you to hang in there and see your son get married (Our son eloped out of the blue early this year, and he and his new wife repeated their vows for us in Nicole's and my 'life room') so who knows, could be soon. At the same time, you know your situation and how you are feeling and the crazy hard road you have travelled...so I don't want to over-encourage and romanticize the hanging in there thing. I just see a parallel in your life and ours and it just really make me feel for you guys tonight, and it makes me really sad and angrier than ever at ALS.

And finally, and at the risk or overdoing it, I have a special place in my heart for Nova Scotia. We honeymooned there and on PEI in the summer of 1986. And I was born in the rival province of New Brunswick a fair amount earlier than 1986.

Very much thinking of you both this evening...Jon

 

[Scotiaspirit]

Sometimes words are hard to find. I am fortunate my wife has taken good care of me for the last five years. I am greatful for it, and so fortunate. Her psychological health has taken a big hit, the enormous worry, enormous workload, and I am becoming more of an invalid with each passing week. My situation has created a horrible situation for her, her life gets increasingly more difficult and hopeless. I love her dearly, and do not want to destroy her soul, as increased pain, a decline in cognitive ability is pushing me down a path that gets increasingly difficult for her. I have suffered horribly with declines in mobility, weakness and constant pain. My body is tired. My mind is tired. Despite new treatments on the horizon, I do not believe they will make a substantial gain in the quality of my life. As Soul, I am tired. I am ready for the long rest or next adventure, what ever awaits. I would leave the world knowing my wife, my love, my cALS, could turn a new page and no longer get dragged down by this horrible disease that is deconstructing my body and soul. To me, that would be the last gift of love I could give to her, easing her burden of being a cALS. ❤️❤️🙏🏻🦅🦅

 

[vltsra]

Dear Paul, your heartfelt posts have brought me to tears.

No CALS wants to lose their PALS. We wish there was a treatment that would make you well again. My PALS told me this morning all of the things he would like us to do together if only he were better. It breaks my heart.

V

 

[Scotiaspirit]

I sincerely appreciate the heartfelt compassion and emotions a talk like this brings. It is a talk I had often with my GP, neurologist and immediate family members including my cALS who is my wife. Quantity of Life vs Quality of Life and I believe when Quality of Life reaches a point where life is unbearable to keep living, rather it is pain, loss of mobility, air hunger, food hunger, then it is up to the pALS to have that control in my life when I feel it is time to depart the world. Stopping feeds via feed tube would be one avenue. In Canada we have a legal avenue to end life with doctor assisted death as long as certain criteria is met. When I depart this world, if I did not die naturally between now and that time, I would chose MAID (medical assistance in dying) when I feel life is unbearable to live another day. My wife knows my wishes and supports my wishes, and believes the same for herself if she were in my shoes. For me death will be the shutting of a very difficult door, but perhaps the opening of a door of a new great adventure or long eternal sleep. These are my personal beliefs and desires, and may not be desirable for others. And that is okay. It is where I have some say about my life with this horrible disease. ❤️❤️🦅🦅💖💕

 

[Scotiaspirit]

❤️❤️❤️

 

[affected]

@Scotiaspirit thank you for being so honestly open. No PALS wants to die, and no CALS wants their PALS to die.
Yet who would wish this on anyone, let alone the one they love most?
We live every day we have to the fullest while we can.
Yet we have to find a place of acceptance at some point to have a good ending that is peaceful, and that the CALS can cope with in grief afterwards.