July 17, 2017 at 11:02 am #693912
Back story: Parents divorced 40 years ago. Dad remarried first, a few years after the divorce. Mom follows suit a year later. Dad died in 2003, stepmother a few years later. Stepdad diagnosed with cancer in 2004. Also has neurological mystery condition in which he gradually lost the use of his legs. Has been seen by the best doctors in the country: Mayo Clinic, Johns Hopkins, Weill Cornell by leading oncological neurologists. I’m not looking for diagnoses – the experts don’t know, I’ve no patience for random internet ideas.
He’s now losing control of the upper body, arms get fatigued very easily and he can’t hold a poker hand. He’s got some cognitive issues now too. I’m going to visit next week to help out while they go to yet another neurology appointment.
I’m very afraid this is the beginning of the end. With my dad, it was sudden, but he never took care of his health. With my stepmom – I was emotionally detached. This guy is my parent. He’s been there for all of the ups and downs and has been my champion when dealing with work or whatever. He used to run marathons, bike 150 miles over a weekend, taught us how to ski. I hate seeing him so frail and so frustrated. I hate seeing him struggle and this new wrinkle with the cognitive issues… it’s heartbreaking. I hate seeing my mom have to deal with all of this. This is not the retirement she planned. She planned for the two of them to travel the world and grow old together. They tried a trip – it was moderately successful, but that will never happen again. My mom will likely outlive him by 10 – 15 year, but that was always a given with the lymphoma diagnosis.
I just needed to vent and get nice thoughts.July 17, 2017 at 1:00 pm #693940
Sending you big internet hugs.
I know it’s sad and frustrating to witness the cycle of life. It’s crap. But you are their support system. You step dad taught you how to ski and he has been there for you and now you will be there for him,and that, I don’t know why, ends up being comforting.
I suggest you find support groups from other people that are taking care of their ill parents. Don’t do this alone.July 17, 2017 at 4:59 pm #693966
I’m sorry your going through this and have to see him like that. I hope you have someone you can lean on while you help support him and your mom. Sending you more hugs!July 17, 2017 at 8:00 pm #693972
Right there with ya… I don’t know if I can say it gets easier, but I’ve sort of gotten used to it, if that makes any sense.
Oddly enough, I’ve found that it’s the anticipation of losing them that’s the worst. I watched my parents decline for years, and it was HORRIBLE. I worried constantly. About everything. If they had a doctor appointment, I was in a clench for days before, waiting for bad news. If they had to go for some follow up testing, I’d be a nervous wreck, assuming the worst.
And then, one day, Dad fell over and died. Yes, it was every bit as awful as you’d think, but…it sort of burned the fear out of me. I’m not that way with my mom anymore. I make sure to enjoy my time with her as much as possible, but I don’t stress out about every little thing like I used to. I know that she’ll be gone someday, but I also know that I’ll survive it, and life will go on.
The only advice I can give you is to not get so caught up in your stepfather’s decline that you lose the time you have left with him. I know that’s easier said than done, but focus as much as you can on doing positive, fun things with him. If he can’t participate in sports anymore, take him to a ball game. If he can’t do that, watch sporting events with him on TV. Just spend time together, as much as you can, doing things you both enjoy. If it’s possible, take him out to lunch once a week.
Sending internet hugs. 🙂July 17, 2017 at 8:39 pm #693974
Thanks everyone – they’ve retired to Florida and I live in NYC so visiting frequently is a bit of a challenge. We’ve been dealing with the neurological for over 10 years – he went from cane to crutches to chair to scooter over the years. He stayed really active and in good humor until very recently. They had volunteered at an adaptive ski program for years before this started so they had a good starting point on resources. He’s just smaller and he doesn’t sing to himself anymore.
Depending on what the parental units need, I can work from Florida if they want me around more. It would be intrusive though. At the least I can be a sounding board for my mom as she learns to live with the new normal.July 17, 2017 at 8:56 pm #693976
I’m so sorry you and your family are going through this. I hope you can spend more time with him soon.July 25, 2017 at 8:17 am #694924
Things are worse than I anticipated, he has lost a lot of weight and just looks deflated. His legs are twigs but he also has edema and won’t put on his compression socks. Probably because his hands are too weak. I’m going to see if his nurse can add that to their morning routine.
Mentally he’s deflated too. We are going to a neurologist in Miami today and i said to my mom we need an evaluation for dementia, which would be yet another blow. The mystery disease is now mid torso, impacting his diaphragm which means he can’t cough. This raises the threat from pneumonia or other breathing issues because no cough, no expectoration.
Yesterday the oncologist asked whether they had thought about breathing support should this affect his breathing. I know my mom has a DNR for stuff like this, me too. But now my mom has to have this conversation with him. We already know what he’ll say: you decide. I told her if it was too difficult then at the appropriate time she could give me control and I’ll make the decisions. Hoo boy.July 25, 2017 at 5:25 pm #695001
I hope it doesn’t come to having to make that decision for your dad LisforLeslie. I can’t imagine having to do that. Sending hugs and good vibes your way.July 26, 2017 at 7:11 am #695071
I’m sorry you’re going through this. Sending warm thoughts to you and your family.