My father was diagnosed in August and is already ready for EOL care

[LadyMi]

Hello beautiful people!

I'm turning to you today because I am just so overwhelmed by emotions and I can't seem to think of someone who'd understand what I am going through better than you. I'm 42 years old and the man who's been my father for the last 34 years is dying. He received his ALS diagnostic in the first week of August and, since then, his health is going downhill so fast, it's terrifying. What started as a hand refusing to work properly now turned into 2 useless hands and now feet barely able to move.

All his energy is gone and he has a hard time doing anything at all. He has always been a very active person, always working outside, crafting, repairing things. Now that he can't use his hands, he feels useless and worthless. He refuses to lose his autonomy. He wants to be able to stand until the end. He said that he's already ready to go but, even though I understand and respect his decision, it feels impossible to accept. He asked us not to cry because it's really draining for him and he barely has any energy at all already.

My mother is devastated and I'm afraid of losing her when he'll decide to go... It's his birthday on Christmas. My mom has asked him to wait until AFTER to ask for the end of life care. I know that it's really hard for him to wait until then. There's such a huge difference between understanding and accepting... He wants memories to leave with, no presents. But it's heartbreaking to see him being the shadow of himself. I'm fighting every time I see him not to cry... I keep bouncing from one stage of grief to the other, back and forth. He is incredibly zen about the whole thing and has accepted his fate but us, his 2 girls and his wife, feel like it's an impossible task.

He doesn't want to get into a wheelchair. He doesn't want a feeding tube. He doesn't want oxygen. He doesn't want to depend on anybody. I understand. I respect his decision.

But how am I supposed to be able to accept that we only have a few more weeks with him before he says "farewell"?

 

[Nikki J]

I am sorry. It is really hard. Have you considered grief counseling? All of you need support so you can support him and also so you can make the most of the time you do have

 

[LadyMi]

You're right... I do think we all need grief counseling... Thank you very much for your answer. I greatly appreciate it.

 

[lgelb]

I don't think you will have the time to accept it in advance. Live his time with him till then knowing that you will not avoid grief but can avoid regret.

 

[cb81042]

I’m sorry that you are in this difficult spot. My husband passed recently from bulbar ALS with FTD and refused all of the adaptive equipment and life-prolonging treatments. We enrolled in hospice as soon as he was eligible. I didn’t want to wait until it was too late to have those resources and support on board. It was incredibly difficult for my husband to maintain his active lifestyle after his diagnosis. A little part of him died when it became impossible. He stubbornly refused assistance right up to the very end. This was hugely important to him to be able to do his ADLs independently. While I miss him tremendously and I’m sad he won’t be here for the holidays or for his birthday (the day after Christmas), it comforts me to know that he was able to retain his dignity right up to the end. It would not have been quality time for him if he was in a wheelchair or unable to get out of bed.

 

[julianuccikelly]

I'm so sorry your father and your family together are having to manage this, @LadyMi . One thing to think about as you assemble your care team is that palliative care is designed not only to make your loved one more comfortable, but to give you and your mum some respite. I agree with commenters who have suggested counseling, but your PALS may also benefit from counseling. (I go every two weeks, and it is such a relief to talk through what's going on with me. It's a different conversation every time, but the best thing is I can speak freely without worry that I will break someone's heart by being honest about my feelings.) Hope you can make some joyful memories together that will remain with you and your family

 

[Gizzmo]

I am truly so sorry. Its a terrible thing to be going through and who do you talk to about your true feelings? My husband was diagnoses a year and half ago. He is the same way was active out in our woods and restoring old cars. Now its all gone and he feels useless just sitting there . His arms do not work his hands do but he cant lift them to eat, dress, even scratch his face he has to ask for help with everything. His legs are getting weaker were I help him walk to the bathroom and back to his chair. It breaks my heart to see him slowly fading away. He has lost so much weight and its still a big no to a feeding tube. I get it and understand how he is feeling but so hard having to be strong in front of him about his decisions. After almost 50 years together and just getting to retire this is not how it should be. But I will do it with a smile and be strong for our kids and grandkids while my heart is breaking. I tell him and the family we are still making loving memories everyday and try to have a few laughs.

 

[swalker]

I was also a very active outdoor person. My main passions were biking, skiing, hiking, backpacking, climbing and mountaineering along with photography.

When I lost my ability to hike and bike, I started going on long wheelchair rides. I became fascinated by wheelchairs and have devoted a substantial amount of time understanding wheelchair mechanics and electronics. I have pushed my wheelchairs to (and in some cases beyond) their limits and have had a blast doing so. This has allowed me to be outside and enjoy nature in a way that I never thought was possible.

I also continued skiing by taking advantage of the adaptive skiing program at my local ski area. It allows me to ski continue to ski despite the progressing weakness I have experienced.

I have also found some intellectual things that keep my mind busy. I watch a lot of educational videos on youtube and have learned many things. I am currently about midway through redoing the calculus courses that I took in college. While I excelled at calculus in college, I have found new insights by revisiting that topic and digging deeper into it than I could in college.

What I miss is being a productive member of society. During the early stages of the disease, I continued severing a couple of local non profit boards. As my disease progressed, that became impractical. So, I don't think I am able to make much of a difference in the world, but I do try to help everywhere that I can by sharing the knowledge I have built up over the years.

Steve

 

[suematt]

Thank you for your advice. My sister has decided to forego her feeding in mid January. She has been under hospice care for almost two years. She has an assigned "social" counselor but I'm not sure that is the person qualified to give her the mental help she needs during this difficult time. And knowing what we are going to experience as she completes her journey, it is helpful to advise us that Hospice is there to give us all some respite also. I will remind our family of that and of course grief counseling. Thank you.

 

[Monica O]

Steve,

Your post is so inspirational! My full time wheelchair days are not quite here, but I fear they will be crashing down on me soon. Thank you for your broad perspective. Although difficult, it's also good to learn those that don't want to continue on this path have the courage to reject interventions.

Monica

 

[Gizzmo]

Rick is getting his electric wheel chair tomorrow. Hopefully this will help him feel a little more independent .Also help with his neck and head problem being able to tilt it back. I just wish I knew how to help him feel better about what he can do. He so depressed about everything which I totally understand it but you have to try and find a little happiness in your life and what you have

 

[Mary2]

Hi Gizzmo, My husband took an anti-depressant and a little xanax and I think this helped. We listened to music together and did audio books together. He also listened to audio books on his own. Any chance he would do a little Wordle or other mind games. We tried to keep up on current events.

For a year we did a Meet up group on philosophy and science fiction. This group was outstanding. Maybe there is a meet-up group that discusses cars. Even if your husband listens to the group, he is part of the group. Would he listen to old episodes of Click and Clack, a humorous radio show about cars that aired in the 90s. These are on podcasts.

ALS is devastating. Everything anyone can suggest pales because the diagnosis is so devastating. Touch is important. Just holding hands and looking out the window. Making sure he knows he is your world and saying I love you.

 

[Gizzmo]

Thanks for good advice on the car shows never heard of them but we will check them out. He does do some games on his computer and does enjoy sitting looking outside in the woods. Deer, squirrels all the wild life we have around us. I hold his hand a lot and give him little hugs as I walk by or just sitting by him. I know he hates that I have to feed him but I don't mind at all. I just want him to feel happy and comfortable. I try not to be a hover but it is hard not knowing what is actually happening to him and wanting to help him. Thanks again will definitely look in to those great ideas.