If anyone is on please reach out to my posts I am at the bottom and need to get up

Status
Not open for further replies.

wewillbeatthis

Distinguished member
Joined
Aug 10, 2005
Messages
185
Dad just is not doing well at all... More emotionally then physically and I am making it WORSE!

He is working a great deal and that means a great deal of driving, walking with his cart, talking, and paperwork when he gets home.....

Then on top of all of this DAD will not go to sleep cause he can't he says that in the past he would love to sleep. He would say ok enough for today time to go to bed and start another day tomorrow. Now when the clock hits 5pm and we are all home or on our way home I think we all have a pit in our stomachs wondering if DAD is going to be able to sleep tonight.... What is he not sleeping?

This not sleeping is hurting him so much. He is walking so slow, he is holding onto every wall and door possible. He actually streaches out to touch the wall before his legs are even near to ensure that he is holding onto something.... Then talking forget about it... He sounds so monatone... Another words slow which he has been for at least a year, certain words slurred also about a year... Now it is extra slow and the entire sentance is slurred now all the time just perhaps a 3rd of the converstions he has through out the day.... He is so Fatigued...

Dad will sleep on the sofa for about an hour to two hours on and off. He will have the jerking on and off in his left leg which he has had for at least three years.... Then he will go into the room and try to sleep around 11:45pm or so... At this time he will lay down and get frustrated and back up.... Then he will walk around, he will do this sometimes for only an hour and then go to sleep and sleep through the night.... other times for hours and not get to bed until 3am... With this beings said I really don't think it can be a breathing issue cause then he would not be able to finally get to sleep.... He can take deep breaths when he is laying down through his mouth opened, pursed lips, and nose..... So what can this be and why?

Once he does get sleep will he be back to the way he was before this all started a month or so ago?

Please, Please respond to me I need to talk and understand....
 

landscape

Active member
Joined
Jan 14, 2007
Messages
82
Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
Hello Jen:

When you say "Dad is not doing well . . . and I am making it worse" do you mean that your level of anxiety and your efforts to change your dad's behaviour is making things worse?

If the answer to this is yes, what can you do to change your behaviour?

I feel that we cannot change other people's behaviour, we can only change our own.

If you were calmer and gave your dad space to come to his own conclusions about his needs would this help? It is hard to see those you love doing things you believe to be harmful but we all treasure our independence and, given time, people often come to the right conclusions as to what is best for themselves.

Sometimes the less we push someone else to 'do things our way' the easier it is for them to change.

In answer to your question "Once he does get sleep will he be back to the way he was before this all started a month or so ago?" my thought would be "Probably not."
We sometimes have to accept the difficult reality of the situation.
 

bellard

Member
Joined
Feb 28, 2007
Messages
18
Reason
Loved one DX
Country
US
State
Arkansas
City
Fayetteville
Hello,

I can relate to your frustration, but even more so, because I live 600 miles from my 74 year old mother, who is fighting her diagnosis for all she is worth. And she surrounds herself with children, who are willing to either support her fight, or take her to the invalid extreme. And quite frankly, if I was there, I am not sure my methods would be any better.

My mother still works, and needs to work and feel needed emotionally. maybe your dad feels the same need. but sometimes it may be even worse for men, who feel they need to be the strong one, and how can they continue to be strong, when this desease is sapping their physical strength every day, in so many ways. It is a contant fight for them.

I have finally backed off, and started a different approach, more along the soothing, accepting lines of, "wow I understand but I worry, and want to help you continue to be independent, and strong. Please help me to be that for you."

It has me a little calmer, and seems to have her a little calmer too. We do not always win, but at least we have a little more sanity. And at all times, know you are not alone!

Good luck
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
I'm sorry your dad is doing so poorly. It sounds as though you need someone to talk to. Have you entertained the idea of seeing a counselor for your own anxieties? This might be helpful. Take care and I will keep you and your family in my prayers.
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
There are support groups, have you contacted the local ALS ASsn, they can help.
 

saska

Active member
Joined
Jan 19, 2007
Messages
93
Reason
Lost a loved one
Country
US
State
Colorado
City
Lakewood
Hi,

I am so sorry your dad and you are going through this. Here's a relaxation technique that I use when I can't sleep or am feeling overly anxious about something; it's sort of like counting sheep, but more zen, haha. It's a meditation of sorts...it's focused breathing. It might help your dad and/or you, too. You just close your eyes and focus on your breath, in and out. As thoughts come in, you just notice them and let them go, bringing your focus back to your breath. Don't try NOT to think of other things, because that won't work....when thoughts come up, you just notice them go by while bringing your focus back to your breath. In and out.

I wish there was something more I could offer. You and your dad are in my prayers.

Sharon
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Jen-people gave you some great advice for dealing with your own anxieties. I'd encourage you to ask for something from your Doctor to help your anxiety, too. This is a terrible disease and it's no wonder you are anxious!

About Dad's jerky legs. This will certainly keep him from falling asleep and staying asleep. I get both cramps and the jerkyness plus my fasciculations are worse if I've had a long day (or maybe I just notice them more) None of these conditions help a person relax, I promise! But quinine pills work wonders. Maybe Dad will call his ALS to clinic to see what they suggest. Good luck! Cindy
 

wewillbeatthis

Distinguished member
Joined
Aug 10, 2005
Messages
185
I thank everyone for helping me get through today. Although mom an dad are not married they are good friends and they had a nice talk today. I was told that I am driving him crazy and that my fears are making him very anxious. So now I feel really bad and want to cry and cry for being like this. I can't help it I get scared when he is not sleeping and putting himself through so much cause he is tired.... He told mom and mom agrees that he is going through so much right now between work, summer coming, my wedding coming, and he is having insomina. Nothing more and nothing less. He will bounce back on his own in no time. I know he will it's just hard watching him go through this ruff turn... I know day by day he will catch up on sleep and he will be the same peson he was a few months ago...

As for me well I do take Lexapro. I just think I have been on it for so long and so much is going on in my life, new house, new job, getting married, 3 dogs, and then bills, and my dad having the ALS, my mom having a mild case of Lupus, and my brother just getting out of School and looking for a job. I take the world on my shoulders and really need to take one day at a time and be thankful for what is going well... I am going to try and switch to a new medication, remember that it sucks to go through these diseases but remember that they are chronic but wewillbeatthis!

Thanks to all of you again and I will let you know how things are going with my new attitude with life, and how dad is doing :)

Jen
 

hboyajian

Distinguished member
Joined
Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
Jen, you have a lot on your shoulders right now, but good things too, like getting married. I'm sure your dad will be so glad to see you happy. If he is like any parent, he loves you deeply and your well being matters more than just about anything to him. He may be suffering with the thought of the ALS taking him from you someday. My dad also worked even though at the end of the day he was so fatigued he could no longer hold up his head. This was painful to see, and I worried about him. His work and his shop were so entwined with his identity that it was hard for him to let it go. Even when he had sold his business, the woman who bought it let him work there until the night he left on the plane to move closer to where my sister and I are. One thing I did, before he moved, was to offer my help to Dad when I had 3 weeks off. I worked in his shop by his side, doing all the things he could no longer handle. Those are special memories I treasure, and I know him in a way I wouldn't have if I had not shared his life in this way.
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Jen,
I, like many others here, know what you're going thru as a daughter of someone with this awful disease! You've got a lot on your plate as many of us do as well. My sister, who is not here to be around our mom, keeps reminding me when I get stressed and overwhelmed that I can be no good to my mom if I'm not taking care of myself. Try to remember that YOUR sanity and well being is crucial to anything you can offer to your dad. You have other life responsibilities and I'd bet your dad would not want you to cause those to suffer or be neglected at his expense.
Take care and God bless!
Nicki
 

saska

Active member
Joined
Jan 19, 2007
Messages
93
Reason
Lost a loved one
Country
US
State
Colorado
City
Lakewood
And also, Jen, please try not to be so hard on yourself! You have done the absolute best that you've been able at the times, and everything you've done has been with good intentions and out of love. Now, take your right hand and place it around your left shoulder. Then take your left hand and place it around your right shoulder. Squeeze. There's a hug from me :). Take very good care of yourself because you certainly deserve it!

Sharon
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Jen_ A wedding! How exiciting! I bet your parents are proud. Tell us more, if you like. It is always nice to have happy htings to think about!:-D Cindy
 

wewillbeatthis

Distinguished member
Joined
Aug 10, 2005
Messages
185
Hello Everyone,

Your words have touched my heart and have brough tears to my eyes...

Great News dad slept last night.... Finally he went to bed at 11:15pm and woke up his usual 4am to go potty and then back to sleep until 6:00am... So he was doing much better today. He was walking better that is for sure... He was not slurring near as much and actually although he was talking slow he was better. So he is getting back to his old self again... This makes me happy.... I know it makes him happy as well...

Yes my parents are proud but they do worry about me cause I am very hard on myself.... I really just want the best for everyone that I love... I put them all before me and will always do this. However, this weekend with the exception of Sunday cause it is Fathers Day I am going to do things for me....

The wedding is this summer later part of August.... WE are so excited. Dad has not really spoken to me much about it and I am not sure why.... I want to have the talk with him to let him know that we are doing things so different this is a big party he does not have to worry about walking me down because we are having the ceramony at the wedding hall... I am walking down with my baby cousin Big bride with little flower girl that wants to look like the bride. Mom and Dad are going to be waiting for me at the alter. I am going to walk between them and then they are going to give me away and then walk back together a few steps to there seat..... When we leave while everyone is going down the isle mom and dad are going to go out the back door and start the receiving line.... The dancing we are not doing son and mother dance and father and daughter dance, throw the garter and all that.... Don't want it... So it is going to be a nice time and he has nothing to worry about.

Ok well I am tired cause I myself have not been taking care of me with all of this worry and now that I see things are getting better I am going to go home relax and get ready for a nice weekend...

Take care and you are all wonderful....
 

landscape

Active member
Joined
Jan 14, 2007
Messages
82
Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
I'm so glad your dad slept last night and that he is getting back to his old self. Your wedding will be a wonderful and very special event. Take good care of yourself!
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
THought from Frizzel

My thought is about our own kids. When I know they are able to take care of themselves and love what they are doing in life, I am much more relaxed in knowing they'll be just fine with or without me. May the best be yet to come! COngratulations on your marriage....We're getting ready to celebrate 33 years...Send your roots deep to draw from God's supernatural reservoir of life~
Frizzel
 
Status
Not open for further replies.
Top