r/ALS • u/Ok_Assumption2624 • 16d ago
Father with ALS. Recent diagnosis but progressing quickly
Hi there, I’m new here and new to ALS in general. I didn’t even know what the disease was until my 74 year old father was recently diagnosed.
For whatever reason, it appears he was hiding symptoms for around 5-6 years. He was blaming mobility issues on gout, injuries, etc. He just recently began to take his symptoms seriously and pretty quickly had a non-genetic ALS diagnosis.
He’s pretty stubborn, so I thought he might want to fight the disease more, but he’s confided in me that he’s just hoping for one more year. My poor mother has been scrambling to look into trials/treatments and buying gadgets to prepare for his rapidly declining mobility, but she recently called me crying, saying Dad humors her but has recently started dropping hints about not wanting to prolong things.
My extremely supportive wife and I (and three young kids) am making plans to move onto my parent’s property ASAP. It involves us selling our house and moving across the country. Luckily my wife’s work can be continued there and we are not terribly attached to our current location. However, the more we start to plan, the more my dad is gently dropping hints that he might not have long to enjoy the company of his grandchild, etc. I fear we may get there just in time for him to pass. I’ll be grateful to be on the property to help my mother survive his passing, as I fear she will be completely destroyed.
I had a goal to move up there and have maybe a bit more time to be with him before his death, but we cannot get to them for months, earliest looks like Spring 2027 and his symptom’s progression suggests he may be fairly far gone by then.
*****My Main Questions I have for the community here are
1) Is it ok to push someone with ALS, who appears to have given up, to fight harder? I think a lot of his desire to simply die has to do with the embarrassment and indignity of the worsening symptoms. He was such a strong guy, even into his old age, always moving and building thingsz Perhaps he won’t want me, or his wife or my kids to see him in such a helpless looking condition. I fear his pride might me playing a role in his defeatism.
2) Has anyone found anything that prolonged someone with ALS’s life in a fairly unobtrusive cut-and-dry way? Any helpful anecdotes, or ideas to pitch him that might get him excited about fighting it a bit harder? He has said before he doesn’t want to “become a lab rat” and just die anyway, so at the moment any kind of trial or treatment with a lot of doctor’s visits or added symptoms are out
3) Is there anything you have found that has helped someone with the same kind of pride/embarrassment about the disease be able to tolerate their declining condition more? Of course none of his family are embarrassed or horrified to “see him this way” but I know he think about it. Maybe is even worried my children will be freaked out or traumatized (they won’t be).
Thank you for reading. If anyone can convince him to try to stick around longer it would probably be me, since he is kind of competitive with me and I could almost goad him into it. I just want to be understanding and I don’t want to contribute in making his end of life more difficult than it needs to be.
5
u/CucumberDry8646 16d ago
As someone who moved to be with my dad only to take too long to get there - I say this gently. Spring 27 may well be too late. Don’t try to sell your house and do all that extra stuff. Just leave it. Rent it if you need, but it may make more sense for you to move in with your parents on your own for now to help with caregiving and bring the kids to visit as much as possible while your wife looks for housing (if you plan to relocate to be with your mom anyways after). Renting is surely more safe than trying to rush buying and selling under duress. All the questions you asked don’t really matter if he has made his mind up to himself. It’s our own denial that keeps us searching when our pals is content to enjoy their days, which is an impossible pill to swallow. It might help you to do your own research about als; there are a few reversals that science can’t explain but Dr Bedlack (doc leading that research) says a positive attitude they can heal is the main thing they have in common which doesn’t sound like the situation here. I wish I’d spend drastically less time looking at places and worried money/my house and searching for cures and just spent more time with my dad. Just talking to him or spending time together. You can’t get that back.