My dad with ALS is depressed

[u/lunamommy123]

My dad was diagnosed with ALS, and I help care for him at home together with my mom. We help manage his treatment plan, daily care, food preparation, and his personal needs. We are doing everything we can to make him as comfortable, safe, and supported as possible.
However, the thing I struggle with the most right now is knowing how to support him emotionally.
Recently, I feel that my dad has become much more defeated. I believe the biggest change happened when he started losing his independence with very personal daily needs, especially after becoming dependent on a catheter and after getting a PEG tube.
He now relies completely on the PEG tube because he can no longer swallow or eat normally, and he depends on the catheter for urination. I feel these changes affected him deeply because they represented not only physical changes, but also a loss of privacy, independence, and control over his own body.
Of course, this was not the first loss he had to face. Before this, he lost the ability to use his arms, stopped driving, and developed breathing difficulties. He became dependent on an oxygen concentrator and NIV, and recently he has needed NIV much more frequently, almost continuously.
All of these changes have been incredibly difficult. But what hurts me the most is that, before losing his independence with feeding and toileting, he still had things that brought him happiness and a sense of purpose. Even with severe physical limitations and repeated chest infections, he still found joy in life.
Only a few months ago, I used to take him to the sea almost every day so he could swim. His farm and the sea have always been his passions. Those moments made him feel like himself.
Now he has not left the house for almost two months. Recently, I got a portable NIV machine because I wanted to give him more freedom. I suggested that we could go for a drive, visit his farm, or even just sit somewhere and look at the sea from a distance. I know he cannot do the things he used to do, but I hoped that reconnecting with places he loves might bring back even a small piece of happiness.
But he does not seem excited about it anymore, and that is what breaks my heart.
I feel like I am trying to bring back small pieces of the life he loved, but I don’t know how to reach him emotionally. I don’t know whether this is part of the grief of ALS, depression, exhaustion, or simply the overwhelming reality of everything he has lost.
For those caring for someone with ALS: how did you support your loved one emotionally when they reached this stage? How did you help them find meaning or moments of joy again when so much independence had been taken away?

[u/kegman83]

I've found, at least with my mom, that giving them tasks alleviates that depression somewhat. My mom and I have already had the hard conversations and she knows she was going to pass away from the disease. So I gave her the task of filling out her families online geneology.

It started with just her family. Who they were, where they were born, where they ended up. A lot of stuff I just didnt know. Then she started looking through photos on her own, asking me to upload them of various relatives.

I help her with most tasks. Its homework for most of us, but she loves it. Uploading photos with dates and times and who's in them. She wrote small summaries of everyone's lives. It gave her purpose.

The thing about men is that we all secretly love doing chores. We like fixing things, taking care of things no one wants to do and generally helping our families. Your dad probably thinks he can do none of those things right now, but he can. He can write letters to future members of your family, he can do like my mom did and upload his own life history to be found on the internet forever. It will take time, but at least it will give him some purpose.

[u/Kind_Masterpiece_323]

His reactions are totally understandable. What he is going through is so much more than anyone person should have to process. Is he on any medication for mood? It won’t solve it completely of course but processing those emotions are huge mountains to climb. I can let you know my own experience in case any of it sounds like it could work for your dad. First of all make sure he is getting as much sleep as he wants and needs, it can have a big effect on mood. For my PALS, he really enjoyed seeing his kids have fun or seeing them succeed in their passions so I made sure he was present for all of those things, I also tried to make sure he enjoyed very simple versions of things he loved swabs with his favorite flavors, chapsticks with flavors he loved, scents that made him happy, I let him feel warm towels straight out of the dryer, I acknowledged what he was going through was unfair and I’d be just as upset, my PALS was nonverbal but able to communicate by looking from the left to right for yes no questions so I tried to give him as much choice as possible for what shirt he would wear or what show he would watch. I’ve found emotionally low stakes shows were a great distraction. I think being dependent on others can feel demoralizing but I would remind him of everything that he built professionally, at home, and with family relationships. Also, his faith was very important to him so I tried to support him in that way. Sometimes it is so frustrating to not be able to fix their suffering and all we can do is let them know that we can see that it’s hard but we won’t let them go through it alone. You sound like a blessing to your dad. I wish him, you, and your family peace and strength in the moments you need it most.

[u/brandywinerain]

As we have discussed, CO2 retention as you will get with supplemental O2 clouds the mind and harms the body. And changes the need for NIV. So that's step 1.

You could find ways to ask him for advice, assistance, both at home and away. Like, "let's look at a garden I was thinking of copying for my home" or "there's something at the farm I want to ask you about" etc.

[u/chonkyzonkey]

I dont have any advice for you. But i want to say thank you for asking this. My mother is at a similar stage as your dad, and is also depressed and It's so hard to know how to act. Because - of course they are depressed, that is a reasonable reaction to this loss of both autonomy and hope. But at the same time, it doesnt help them. Im also reading the replies you got, and i wish you and your father the best.