Need To Talk, Vent, Cry, Scream, Be Happy

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Distinguished member
Aug 10, 2005
Hello Everyone,

Well, this weekend is the big one.

Tomorrow we are moving dad in. For the most part he seems excited. However, at the same moment he is getting moody... I think this is because he is not real happy to be moving in with his daughter and future son-in-law... To be honest he is very independent. His walking is and has been the major issue now for about 3 years. A cain for short distance is fine and a carriage or something to stable himself for long distances he is what gets him through the days.

I have spoken of this before. He cooks for himself, cleans, works, drives, goes to the stores as long as a carriage is available. This is great and I pray to GOD that this is what it stays like for years and years to come. This is not to say that he does not have bad days. Cause when he is stressed and just not having a great day he is tired, speaks a little slow, walks a bit worse, and just overall not in a great mood. I can deal with this and so can my hubby. Most of all he has learned to deal with these things better and better. However, this is what I am nervous of.

My hubby seems to think that I make dad nervous because he feels he always has to be well when around me. Walking well, speaking well, eating well, sleeping well, and just over all well or else I will nag him and ask what is wrong. I disagree but just in case this is the case what do I do? How do I just let him be. I am so scared that when living with us I am going to notice that in the middle of the night when getting up to go into the bathroom it is hard for him to get around cause he is tired, it is dark, and that it is hard to walk without shoes and therefore I am scared he can fall. I guess what I am asking is how do we make dad feel great that he is living with us and to make him realize that there is no reason to be nervous, feel bad, feel uncomfortable...

I am his little girl in his eyes and he should be taking care of me not the opposite. I tell him all the time that dad I am not taking care of you. We are having you move in with us cause this way you can be stress free not worrying about carrying groceries up 20 stairs, and going up and down to do laundry, not being alone cause when you live alone you tend to dwell. Also we want to make sure we can keep those legs loss and do the ROM's with him each night the doctor said the more you do this the more loose they will be and the more walking he can do without getting tired. Anyone agree with this?

Thanks in advance for your feedback and thanks for letting me vent... I am hopefull that we will all beat this ALS...
What a lucky Dad

What a lucky Dad to have such a wonderful, caring and considerate daughter to help him through this difficult time. I don't have any answers for you, but I wanted to tell you that from the sounds of it, You are doing a great job! Your Dad is probably breathing a sigh of relief knowing that he has someone who loves him so much.

sincerely, Barb :)
Night lights make it easier to move around in the dark and moving small furniture like hall tables and small rugs that he might stumble over are a good start. I have trouble with fine motor skills so turning on a normal lamp is a chore. We got 2 goose neck lamps that have 3 settings on them and all you have to do is touch them anywhere on the lamp the number of times you need for dim medium or bright light. They were less than $20 at Home Depot and no I'm not advertising for them but that is where we got ours and they work great especially as I wear hand braces to keep my fingers straight so would have to take the braces off in the dark to turn on a regular light. Getting him to relax and feel at home is a little harder to solve. Some things just take time. I'd try to not baby him too much. He still needs to feel independent. That's a big thing with us older guys. Sick or not. Hope this helps. Good luck. We've been living with our daughter and son in law for 2 1/2 years now in our own apt. and it has worked for us. She's a nurse and Paramedic and and wants me close so she can help my wife with my care. Good daughters like you are hard to come by and you can tell your dad I said so.
I ditto what Barb said! He is very blessed!

You are right when you said us Dads are suppose to take care of our kids, not the other way 'round. I had tremendous difficulty coming to grips with allowing friends, inlaws and the like do the work I felt that I should be doing! It's that dang pride.

Is ther any small jobs you could have him do? Type, look over your books or do a minor repair that he could do seated? I know for me, I can't do major repairs around the house but I can guide my wife or son through the process. I talk and they do. It makes me feel I'm not just sitting around but being a productive part of the family.

It may take some time for him to admit it to you, but believe me, when there's no one around, he's thanking the good Lord that you folks are looking after him!

Mike. Where you been hiding? Haven't seen you around in a while. Off vacationing somewhere?
Al said:
Mike. Where you been hiding? Haven't seen you around in a while. Off vacationing somewhere?
Hey Al!
No, I was trying to get some writing done so I took a break from the forum(s). It's silly how much time I spend on these darn things!

Well some might call it silly: some might call it therapy. Anyway it is good to see you in action again. I've wondered about some of the people like yourself from the old forum. I guess some just lose interest or just pass on and the family doesn't know they were here and don't know to let us know what happened. Pals Mike from Calgary is not doing too well from what I heard. His site has been hijacked by spammers and is just a mess. It is a real shame because he was trying to help so many people. Well I guess it is just one of the fun things we have to look forward to.
OK...dumb question...what are spammers and what is spam (and not the mystery meat because I know what that kind of spam is. My dad used to make it every Sunday as a little treat to us kids...YUCK!)
Spam is unwanted advertising emails. Usually from drug sellers selling Viagara and other assorted meds. A lot of porn sites use spam. They buy your name and email from other legitimate sites that you may have visited. I won't mention any names but there was an ALS website that I joined a while back and right after I started getting junk mail. Of course they swore up and down that they didn't sell my name but it was a strange coincidence. So be careful who you give your email to.
Al, the offer is still there, if you do get a hold of Mike or anyone with access to that site I can have a developer take a look and clean the site up; it's just not fair and definitely not right that his efforts get diluted by people with ill intentions.
I want to thank you all for your response.

WELL let's just say that it started great, a few little fights here and there... However, over all it went well.... I have taken the advise that was given to me and we all have our own little jobs.... Dad made dinner all weekend and loved doing it. I worry cause he stays on his feet for a longtime. He says it does not bother him and the only thing that does is his walking... He took it upon himseld to clean the kitched yesterday, and go through some of his boxes... So far so good....

I am going to start another post that I was hopeing my ALS family can advise and shed some light on for me.

Thanks again...

Al you mentioned something about PALS Mike not doing so well. What is going on he was doing so well. I believe I have the correct Mike in my head. Is this the same Mike that has had this for like 14+ years?

wewillbeatthis said:
Al you mentioned something about PALS Mike not doing so well. What is going on he was doing so well. I believe I have the correct Mike in my head. Is this the same Mike that has had this for like 14+ years?


Hi Jen,
So glad to hear it's going well for you and Dad!

I'm the Mike that has had this for about 13 years this October. Diagnosed at age 30.
I like to say that life doesn't end at the diagnosis!
Cheers and blessings!:-D
Hi Gang. I talked with Pals Mike's wife today. He lives in Calgary and owns the website. He is not doing too great. He hasn't been able to go on the computer since Feb. and is mostly non verbal. His wife said he is still able to transfer from chair to chair but that is about it. She okeyed me telling all his friends how he is doing. Mike is the guy that did Avatars for some of us oldtimers. A very talented and generous man. I'll check in on him occasionally and let you know how he is. Al.
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