I hate that I'm here but I'm so glad ya'll are here with me.

[city_sunshine]

My dad was tentatively diagnosed with ALS earlier in the month. His diagnosis was confirmed yesterday, on his 65th birthday. From what I've read here, it seems that he's in capable hands with Dr. Boylan at Mayo. I'm finally at a place emotionally where I feel like I can read and post here without sobbing. I still cry everyday but I can just about get through my daily workout without making a trip to the bathroom to wipe tears from my face. That's progress!

I really want to sincerely thank everyone who contributes here. I've been reading nearly everyday for the last month. Your posts, information and support to each other have helped me to not take a long walk in Lake Michigan these past few weeks. Even when you don't think people are reading your posts, they most certainly are.

What can I do to best support my dad? He lives in Central Florida. I'm here in Chicago, so I don't have the luxury of spending lots of time with him. Moving is not out of the question if I could secure employment there. I feel helpless and useless and I hate it. I want to make his life gentler, kinder and all around nicer but I am well aware that ALS is ugly and cruel. I'd appreciate any guidance you wise souls have. It seems like nobody in my social circle really understands ALS or what my family is experiencing.

 

[Nikki J]

I am sorry you have to be here but welcome.
If you have not done so yet read the stickies to get some idea. What supports does your dad have in Florida? It is going to get tough to live alone It can be done but it is harder. If it is just him in Florida and you in Chicago it is going to be a challenge. My take though if someone has to move it should not be you- unless you are planning to move to Florida anyway. You should not uproot your life for what is going to be a temporary situation. No one here can tell you how long your dad has. It could be a very long time. I hope it is. But sometimes it is fast.
The best thing you can do for your dad is to educate yourself as you have been doing, assure him of your love and support and when he is ready talk frankly about how you can help him on his journey without destroying your life and career

 

[Atsugi]

Ah, Sunshine, I feel for you. It is really tough to be at such a distance and so loving your dad. There is plenty you can do to help him physically and emotionally.

What city is he in? Is he a veteran?

Now, for blunt words. Don't ever forget that a parent has a unique relationship. Above all, he wants YOU to be happy, safe and secure. So he might actually NOT want you to move, if it endangers your career. That's the nature of a parent's love. And don't forget that, as an older adult, he's earned the right to make his own decisions without pressure from others. Only he knows what he's feeling.

I wish you the best. Stay in touch and we can give you some support whenever we can.

 

[city_sunshine]

Hi Nikki! Thank you for your kindness and the sage advice. He has my stepmom as his caretaker. You're not the first person who has said something about this situation being temporary and I do agree. My entire life is here. I left Florida immediately after grad school to make a new life for myself here in Chicago. That was when I was young and dumb. I'm almost forty now and the thought of starting over yet again terrifies me.

I'm so wrapped up in this situation emotionally that I've found it difficult at times to think rationally. It is very helpful to have objective opinions. I will continue to read and ask him directly what I can do to support him. Thank you again for your help.

 

[cheerleader]

Sunshine, we all understand. When my hubby was diagnosed, our daughter who lived a few hundred miles away was able to come down every few months to spend a few days with her dad. She has repeatedly said what important times those were for her, and she had never felt closer than these shared times because they both realized how precious life is. I always "disappeared " for a few hours each day to give them special bonding time. She has a host of stories her dad shared with her that are part of great memories to ease the grief of having lost him. You don't need to change or uproot your life. Just try to build in some special time with dad so you have no regrets. I am so sorry you have to bear this- but dad will always be with you deep in your heart. Donna

 

[city_sunshine]

Ah, Sunshine, I feel for you. It is really tough to be at such a distance and so loving your dad. There is plenty you can do to help him physically and emotionally.

What city is he in? Is he a veteran?

Now, for blunt words. Don't ever forget that a parent has a unique relationship. Above all, he wants YOU to be happy, safe and secure. So he might actually NOT want you to move, if it endangers your career. That's the nature of a parent's love. And don't forget that, as an older adult, he's earned the right to make his own decisions without pressure from others. Only he knows what he's feeling.

I wish you the best. Stay in touch and we can give you some support whenever we can.

He and my stepmom are in New Smyrna Beach. He is not a veteran but he has fairly good private insurance along with Medicare. Thankfully, I am not terribly worried about him and my stepmom financially. I know the costs can be enormous but feel confident they will be okay.

The bluntness is appreciated. I need more of it to be honest! I cry and whine for hours everyday to my momma but she's not objective either. She's my mom. She still thinks that I pee rainbows and unicorns. You are right about my dad earning the right to make his own decisions. I'm so grateful you mentioned that because I can be annoyingly(!) bossy. I also have to respect my dad and stepmom's relationship. I think parent/child relationships can be particularly difficult to navigate when all parties involved are well into adulthood.

I want to thank you personally. I've read the journey of you and your beloved wife. It was sad and so very sweet. You're one of the people who made me feel tremendously better about my parents choosing Mayo.

 

[city_sunshine]

Sunshine, we all understand. When my hubby was diagnosed, our daughter who lived a few hundred miles away was able to come down every few months to spend a few days with her dad. She has repeatedly said what important times those were for her, and she had never felt closer than these shared times because they both realized how precious life is. I always "disappeared " for a few hours each day to give them special bonding time. She has a host of stories her dad shared with her that are part of great memories to ease the grief of having lost him. You don't need to change or uproot your life. Just try to build in some special time with dad so you have no regrets. I am so sorry you have to bear this- but dad will always be with you deep in your heart. Donna

I'm sorry about your husband. Your post made me tear up, especially since you recognized the importance of your daughter and husband spending time alone together. That was very gracious of you.

I am making plans to return home more frequently. I went home last weekend for my dad's birthday. We were able to spend one day together, just the two of us. It was so special and I will always remember the perfect lunch and day on the beach we had.

You all have been so kind. Please know that your kindness makes a difference in the lives of strangers. I hope I'm able to pay it forward one day.

 

[Nikki J]

Relieved that he has your stepmom. And that you can vent to your mom
Sounds like concentrating on quality visits is the way to go. Your stepmom will need your support and respite as well. I know these relationships can be tricky. She is going to be the team leader here but you can help by pitching in when you visit whether it is staying with your dad or cooking doing errands or other household tasks. Your visits need to have lots of quality time with your dad of course but later on there needs to be practical help which I am sure you are anxious to give when needed

 

[Nuts]

Sunshine, you've been given some wonderful advice, and it sounds like you are wrapping your head around the situation. I would add that if you can Skype with your dad on a regular basis I'm sure it would help him immensly (as well as allowing you to conncect even more). Also consider making yourself available, if possible, for more frequent visits. The time will come when your stepmother will be eternally grateful for someone to cook her a hot meal and spend a few hours with your dad. When you help her, you will be helping him.

 

[skipper66]

My dad now lives in a assistant living facility in Dallas and I live in Illinois. Luckily, my dad still has his voice since he has limb onset. I call him and talk to him at least once a day if not twice. My brother and sister also send me regular texts on how he's doing. They notify me if there is even the slightest change in him. Many places now have family medical leave that you can take if you need to help ever with his care. I'm dad's caretaker but if I need to where I work I can get up to 12 week off without losing my job to take care of him. Kim

 

[MaxEidswick]

your dad/stepmom could find this site helpful ...

 

[city_sunshine]

your dad/stepmom could find this site helpful ...

They know about it and like me, have done a lot of reading. I'm hoping that they'll join at some point and that they will magically skip over all of my posts. I would rather my dad not know how truly sad I am and how much I worry about him.

Nuts suggested Skype. Thank you for that! I made an appointment with my dad to Facetime with him in the next few days. I'm looking forward to seeing him and for him to see me and his grandson, my little boy dog. I will skip the hot meal for my stepmom as I don't want to kill her with my awful cooking. I am, however, adept at ordering takeout and will make sure to relieve her in the upcoming months or if I'm lucky, years.

 

[Barbie]

you sound like a great daughter! Mayo is a very good clinic and your dad is in good hands there. I agree with everything said here--when you do go visit ( make it often if possible) don't just be a guest, let your Stepmom get out of the house and give her a break. cleaning and laundry is so big for me--if dad doesn't want you to help with personal care, you can do so much other stuff around their home to help out.

 

[Blondrea]

Hi, Sunshine. Not sure if anyone has mentioned it yet, but there is something called the Family and Medical Leave Act. I'm no expert, but when my partner got diagnosed, I talked to my company's HR Department, and they told me about it. You can take three months off a year to take care of a loved one, and that includes parents. The time off is "job-protected." I realize this could obviously still have a negative impact on a person's career. But, something to maybe consider so you can spend time with your Dad and help your Stepmom. My HR Dept. said that the weeks don't have to be taken consecutively. Again, I am no expert, but wanted you to know about it. Here is a site with more info. My heart goes out to you and your family.

Family and Medical Leave Act - Wage and Hour Division (WHD) - U.S. Department of Labor