Status
Not open for further replies.

tinyandme

Distinguished member
Joined
Dec 17, 2013
Messages
220
Reason
Lost a loved one
Diagnosis
10/2013
Country
Ca
State
On
City
Barrie
Just wondering how everyone s kids have handled diagnoses and progression. I'm not a mom myself really but have 3 wonderful step sons aged 14, 19 and 23.

The youngest is handing it best really. He helps his Dad whenever he can, oldest is avoiding us it seems and middle one is in the middle somewhere.

Oldest surprises me. He actually moved into our apartment building after the diagnosis, I guess I just assumed it was to be closer to Dad. Help out. That sort of thing but we probably see him less now somehow.

Not sure who I am sadder for. Hubby who sits alone wondering where son is or son who will undoubtedly regret time not spent with Dad some day.
 
My son is torn by this. He wants to help but has three little ones, oldest is just four and youngest a month old. I pointed out to him that as this progresses it will require more and more care and in order to that he would have to neglect his kids, something I will not allow. Told him other family members can provide the care, best thing he could do for me is to make sure those grand babies are taken care of, I at least can have some peace of mind
 
my wife's son Boo had had nothing to do with me since September 2009. Jenny, in Germany, is studying neurobiology and so has taken an interest in the futile attempts at finding a cure for ALS. she Skype's periodically with Sandy.

And the rates of my progression, I have sent a family wide email explained that despite anyone's wishes to come and visit, I want prefer and they didn't.

I am searching urgently and need to find Sandy our new home, so we won't be able to take advantage of the $200,000 VA mortgage life insurance policy. I have to do this before forced disability@HP because no one is going to give a mortgage to someone on disability.

I have made arrangements with local mortician to handle the body collection and cremation where I have instructed, via legal documents, that the mortician is to dispose the actions – – ideally flushing them down the toilet and hoping it gets plugged up :). Ashes to ashes dust to ****ing dust.
 
I have two kids, son 25 and daughter 20. They are both in college and share an apartment in town, about 20 minutes away. They help when they can, but they work and attend school.

They are handling it well. They spend time with me, help me with some of the things I want to get done before I die, and text or call when they can't come out to the house. They also have people that they are comfortable with sharing what they are feeling and how to handle this horrible situation.

My daughter just moved in with her brother. I think it will help with the day to day stress of seeing me decline. Both kids are 4.0 students involved in many activities and councils at Tech. They also work part time, and are active at church. I want them to stay active, and create a fulfilling life for themselves. They will be a strong support system for their father when I'm gone. We've moved from that stage of parenting where you have to run their life to enjoying how they run their life, knowing you've done the best for them that you can.
 
no one is going to give a mortgage to someone on disability.

If you have a sizable sum available to you for "home modification" grant, that would be an excellent down payment.
 
Wow max, your awful efficient! Hayden seems to me to be progressing very fast as well, he seems to think he'll be gone within the year. I don't know. If it was my parent I'd want to be there as much as possible. Sad or not.

So if you get a mortgage before passing it will be paid off for Sandy? Is that how it works? No small print that says if you knew you were ill blah blah blah..? Either way you are by far the kindest husband I've ever heard of. She's a lucky lady
 
My sons are grown men now. The oldest is 41 and the youngest is 34. The oldest is an assistant principle and head baseball at a small private school here. Now that school and baseball season is over, he will probably come over more often. The youngest lives 200 miles away and gets here every 3 weeks. They both do not want anything to do with the vent. Scared.......when they come over they usually end up leaving in tears. Talk about sad. They hate to see their dad this way. Now that he can no longer speak, they end up just sitting here. Both have told him how much they love him, respect him and most importantly, admire him. The oldest is the stronger of the two. The youngest one, I'm worried about. They both want it to be over with. Seeing their dad in this situation is overwhelming for both of them.

Debbie
 
Maybe I'm just being selfish. Ya, no thats what it is. I was hoping for help, from the oldest that is atleast. Feeling a bit overwhelmed some days. I work full time then come home and care for the man I love. Rather then hang out, make love, have fun. His sister came for an unexpected, uninvited visit for a few days last week. Shes a nurse so I was over joyed as I thought she would give me a bit of respite. Instead it was just one more person to clean up after and cook for and when Hayden had a choking/panic episode she ran. Left the house in tears. I understand it must be upsetting being your brother and all but cmon..if your not gonna help don't come! Atleast not for longer then an hour or two..
 
>They both want it to be over with.

Me too, but there are too many things yet and I have to do for Sandy.
 
santa joe...can he communicate yes-no with blinking eyes...sons can talk about things he can answer with yes - no...difficult but with practice it should get easier...when I go to clinic I am able to talk to other PALS this way or use a letter board to spell words then help fill in...their dad deserves this if he is willing
 
Our kids are 26 and almost 23 now. They were 21 and 18 when their dad was diagnosed and away from home in college. Now they are both working, one with a job that requires a lot of travelling, and when not travelling, she stays with us. (She had an apartment in the east coast for a while but then she gave it up and moved in with us) The other one lives 400 miles away, and comes for weekends about once a month. They both help out with transferring, feeding (first with the spoon while dad could still swallow, and now with the tube), etc. and with household tasks. They tell dad about their work, and whatever else is going on. Take him out for walks with him in his pwc, and they drive it with the controls in the back. I am not saying everything is rosy, like how dad can drive them crazy when FTD takes over and I can see the clenched fists they are hiding from their dad sometimes.
 
I tried to always understand that everyone handles things differently, and that Chris kids had only gone through losing their mother cancer 8 years earlier. They were 11, 13 and 18 then, so pretty tough on them.

With Chris they were often very strange - in the early days they would make fun of his speech problems, they would laugh at many of his deteriorations. He would laugh along with them, but I would be horrified inside wondering how anyone could do that to anyone, let alone their father.

They mostly only ever spoke to me of how awful it was because ... [fill in here all the coming life milestones dad would not be there for - for THEM]. Now I understand that, sh it he wasn't even here for our 3rd wedding anniversary! But I would think, yes that is valid, but shouldn't you concentrate on what he is going through, grieve that other stuff after he is gone, he NEEDS you now!

I only really got the 2 of them that live fairly close here by requesting they come towards the end, chasing them up - what are you doing this weekend? In the early days they all stayed away like he had the plague. I was very concerned that they would have deep regrets once he was gone if they did this. I'm very glad now that I ended up making them have some involvement.

I remember when I broke my toe earlier this year and his daughter came over 'to help'. She arrived, said hi, laid herself on his hospital bed and went to sleep. I thought, hang on, shouldn't I be the one resting with my feet elevated? oh well ...

The one that lives only 1.5 hours away would organise to come, and then FOUR times she didn't at the last minute. THREE of those times I had cancelled home services because she was coming 'to help'. One of those times she never even bothered to let me know she wasn't coming. She would brag to me, right to the end that she was the only one dad would trust to do anything for her ...

Like others report, if they did come it was just another person for me to wait on - would you like a cup of tea, have you had lunch?

Frequently his kids said to me - I'm SO GLAD dad has you to look after him ... yeah and I bet they were!

My kids gave more practical help along the journey, and none of them live close to us! They didn't come often, but when they did it was a whirlwind of them doing stuff outside, fixing little things in the house and just sitting and talking to Chris for hours on end.

I also remember early after diagnosis Chris saying to health professionals with me sitting beside side him, many times - I'm doing OK, the only thing that really upsets me and worries me is how this is all going to be for my children. I would feel like some statue just sitting there thinking, don't worry how it will be for me I'll be fine eh ...
 
I am abandoning 3 kids who live with me in FL aged 9, 12 and 14 to go live with my daughter in MN. Besides the racket and the mess they make I don't want my grandchildren to see me in a wheelchair with a feeding tube and respirator. We have to make tough choices.
 
my kids were 10, 12, 15 and 17 when husband was diagnosed. the oldest left for college 6 months later, and never really came back for more than a visit, and never really helps or does much. He is 25 now, and he does text and chat with his dad daily, and when he comes home he is always willing to do what I ask--but he really disconnected himself when he moved out. the other 3 have done and seen so much. the two middle ones have been very helpful and are very involved with their dad. the youngest has taken it the hardest and even now at 18 can not be trusted to care properly for his dad with the most basic of items. (but he does some things and helps a little)

As their mom though, I don't want this life for them and I would rather do the work so they don't have to. I encourage them to move out and live their lives even though I want their help and don't want to be left alone.
 
Good point Barbie - we don't want this life for them at all! I was also happy when Chris youngest moved out.

I would rather they had made their own choices to come back and help regularly. Not to do personal care, but to be involved with their dad.

When he was first diagnosed oh his son was going to do all this stuff. He finally took his father fishing ONCE.

In my mind I'm linking my thoughts here to the quality of life thread.

If they had just come often, spent some quality time with him, seen the progression in little bits (rather than seen huge amounts of progression by only seeing him now and then), made it clear that they wanted to be with him ... how much quality of life that could have given to him instead of him becoming more and more cut off from everything.

OK, I'm kind of going off track there as I'm playing "if only" and it's a dangerous game to play ;)
 
Status
Not open for further replies.
Back
Top