Father recently diagnosed but progressing quickly.

[Lil_star]

This is my first time being at this site. I am trying to reach out to others who have gone through this to get advice. My father is 56 he was diagnosed with Als in Oct 2012. He is progressing a lot faster than I realized and I live 4 hours away from him. He has my sister there but it's rather hard for me to see him as much as I would like to. It makes me feel guilty about being so far away. And every time I text or call him I know he is going through pain because his arms are very painfully and he can barely use them. He's right arm has no strength and his left seems to be getting worse just as fast. I'm not sure how to cope with this. His own father passed when he was young which means I never got to meet him (my grandfather). It has always been difficult because my father doesn't talk about him much. I have no children right now only my sister has a kid. And he wants to meet his grand kids before he passes. But my husband doesn't want kids. I know this is more venting than really asking for advice but to get right down to it. I don't know how to get past the fact that my father is dying and quickly (or so it feels). How do u deal with something like this. I have tried talking to my mother ( my parents are divorced but they get along quite well) and my sister but it seems nobody is taking it quite as bad as I am. How do I make things better for him and how do I try to make things easier for me?

 

[HelenL]

I think you 're going through part of the grieving process, which is pretty normal at this stage. While it may seem like he's progressing fast, it may plateau for a bit. Is your family working together to get things in place before he needs them? It makes it easier to have it around before you need to rely on it. If his hands are going, then maybe a speech to text program would help him.

Since you can't be there as much as you'd like, try sending him cards and notes to him... he may also feel like he's not alone if he comes on the forum or goes to the ALSA or MDA support groups.

Finally, perhaps talking to your doc about an anti-depressent may help you through this phase. Good luck and keep us posted.

 

[Barbie]

Hi Lil star,
I am so sorry about your dad. Helen had wonderful advice and exactly what I would say. The only thing I would add is that a 4 hour drive is long but not impossible especially if you do not have kids at home. If you could drive over every other weekend and stay with him it would do you both a world of good. You don't know (no one does) how much time he has--it could be a year it could be less, it could be 5 years or even more.

Your sister will need help caring for him, and your visits would help you, him and her.

stay n touch with us-- we understand.

 

[Lil_star]

My family has definitely come together to et things in place for him. We have a lot in place right now for him. My sister is going to move in with him when he gets bad enough and we have an electric wheel chair from my Mom and Step Dad when he's ready for it. My mother helps by cooking him meals for him once and a while. She lives closer to him than me and my sister. We also have a great neighbor who lives right across the street from him who helps him out when he needs to move things and checks on him every once and a while. We also have a process everyday we go through to know that he's ok. But all in all we have really come together. I go to Maine to visit him once a month which is as much as I can. It's hard for me because of work. I work for a corporate company so they don't help too much. I have been taking a more natural antidepressant called Sam-e. I like to take more natural things than just go on regular medications. Thank you so much for the advice. I appreciate it very much.

 

[eibhlin]

I was diagnosed in August 2012, a couple of months before your father. I was falling for a year before the ALS showed up in EMGs. I take riluzole, which is supposed to extend the lives of ALS patients. I have no pain at all, just weakness and loss of function in my feet, I got a foot brace, which helped when I was walking, but now I cannot walk without the risk of a fall. I think it progresses quickly too.

By all means, vent. Loss of a parent is hard. My mother died of this too in 1989. It affected her hands first, like your father. I am in a nursing home now, and I have a motorized chair. You will have time to adjust to your father's illness. Please don't think you have to have kids for your father. That's not a good reason to have a child, I think. It sounds like you love your father a lot. That's enough.

Eileen

 

[bob_s]

I keep in touch with my son and grandkids with video Skype in between their visits. My symptoms are progressing quickly, so these virtual visits are important to me because in a way they allows me to cram more living into my remaining time.

 

[dbltree]

I'm sure your father will appreciate any time you can spend with him if you can set aside some time on the weekend to be with him.

 

[skipper66]

Lil Star,
I am experiencing alot of the same things with my father. His illness has been extremely hard on me to deal with. I take antidepressants because I suffer from depression even before my dad's diagnosis. Wish I had more words of wisdom or advice for you. Hope it is some comofrot to know that alot of us care on here. Your family will be in my prayers. Kim

 

[HelenL]

Lil Star, I saw that you had an electric wheelchair for your Dad, and it may be fine for now... but keep in mind that he will probably need a very high end pwc with tilt & recline, and something that you really should get is the lift feature... I wouldn't be able to transfer into bed without it. And many insurance co. won't pay if he cannot still stand up. So be sure you plan ahead and get it ordered before you need it.

 

[Lil_star]

We are saving up for the chair ur talking about. But so far it hasn't affected his legs so saving money right now until it does start to go to his legs then we will buy one before he can't walk or do anything else. Thanks everyone for all the input and advice. Some days have been easier than others. But I still cry a lot. But even when I do text or talk to him I cry afterward. Found out he is going to come visit me in a couple weeks. And then again in March. He may have to have my sister drive him or a friend of his but have planned some things together. And we are planning a family trip with my sister and her family ( my 8 year old niece in particular) to Disney. He just went to the doctors recently and they said that his arms are weaker but his legs and throat are fine still. So far so good as he says.

 

[daigs]

Hi Lil I am so sorry for what you are dealing with. I am going to tell you what I think from a person with ALS. I am 38 and was diagnosed 11/14/12 @ 2:30. It's funny how some dates and times stick with you. Your dad is going through so much right now. Like you I never had kids but wanted them but now it is too late. What your dad needs most is just hearing your voice even if it's for a short period of time. My hands are like your dad's and what I use now is a hands free (Bluetooth)for my cell phone. I have found that the simple things are the most important and don't forget that. Is he going to try any of the trial drugs?

 

[tlee]

Hi Lilstar...
I am in the very same boat.. and feel like Im sinking.
My Mother was diagosed in Dec 2012 and seems to be progressing so much faster than I ever imagined. I too live 4 hours away.. and also have my brother living next door to my parents (thank god)
I know what you mean by feeling guilty and helpless.. I feel like I should be there every day and I just cant. I feel like I am being completely consumed by this. Moms symptoms began in her hands and was originally misdiagnosed as carpal tunnel. When things kept progressively getting worse they thought that it was the Statin drugs she was taking for cholesterol..
ALS diagnosis came in Dec.. 2 weeks before Christmas. Every day seems to bring something worse.. please contact me directly if you need someone to talk to who knows exactly what you are feeling with both the disease and not being able to be there. Might help both of us.

Tara