I'm so angry and full of grief

[jmaycavagnol]

Kim...I'm very sorry to hear about your husband's diagnosis. My prayers are with you. I just listened to this song and i just cried and cried. Thank you for sharing.

My boyfriend and I tried to celebrate Valentine's Day yesterday and it was just a disaster from all the stress of everything; we ended up in a huge fightl screaming at each other and ultimately he slept upstairs with the beagles and I stayed downstairs in the bedroom. Now he is away for a week on the other side of the world. We had one of those fake days where we pretended to get along for the sake of getting along and honestly when I dropped him off at the airport; well I was feeling slightly relieved just to be alone for awhile. I feel so bad for our argument but I am just at the max....how do you not let this tear relationships apart? How do you come together instead of pushing people away.

I have not spoken to my mom for two days because I just can't take it right now. I feel bad that I have not called her but I am just suffering in silence right now and I feel like I am going to explode....wait I exploded last night on my boyfriend. He even apologized and I just kept going on and on and on and on and on...it's like I have not control of my emotions at all right now.

 

[Katie C]

Have you talked to your doctor about getting yourself some anxiety meds? You need to keep yourself healthy.. this is a long haul illness for everyone.

 

[Miss]

I agree with you Katie. I've got Ativan for those "special" days. I've had the prescription for over a year. I think I've only taken about 10 pills, though. Knowing they are there sometimes relieves the tension for me.

 

[pudge44]

I am glad you like the song it was from me to you, if at all possible just let your mum know that you are having some "down time" to try and digest everything, the reason I say this is because your mum really needs you however if she does not know why you have not been calling in the past few days as a mum she will worry more, then it gets more mucky.

As to your fight, people in relationships fight & you are under a lot of stress, if he is in there for the long haul you will get to sorting it out & you are right in saying you probably need the mental space for now, my husband has lost at least 60% of his speech and he still growls at me LOL yes we still fight he just does it in a different way now, stay in contact I was told that once you have 10 postings you can private messages :0) <<<<<<<< hugs>>>>>>>> to you.

 

[jmaycavagnol]

I am going to call my Doctor this week for an appointment because I just can't keep internalizing everything until the point I explode about some little thing. I talked to my Mom today and we sort of discussed venting and feeding tubes and she was real clear that she will have the medical directives put in place so that she does not receive either. Also, she told me that she does not want to take her blood pressure or thyroid medicine anymore because it is pointless then I caught her in a lie b/c she said last week that rescheduled her appt to this week and when I asked her what day----she said she cancelled it---I asked her why she said she rescheduled and she did not want to talk about it anymore.

I bought the books Tuesdays and Morrie and The Five People You Meet in Heaven today--I have not had the courage to open the books and start to read them yet though.

I can't begin explaining how fortunate I feel to have found this Forum; I was on the brink of a total mental break-down when I came across these boards. Now I don't feel so alone with all of this. Thank you and God Bless everyone for all of this support.

 

[joelc]

Have you been to my website yet? Living and Surving with ALS

 

[jmaycavagnol]

I did not know that was your website; I was visiting it yesterday. Thank you for having this website. You give hope in a situation where it is easy to lose your hope.

 

[jmaycavagnol]

well, I just got off the phone with my Mom and she told me that she got stuck in the McDonalds bathroom yesterday because she could not get up from the toilet. She is so upset and embarassed. She also told me that she cannot pull up her pants anymore because she has basically lost the strength in her arms. she said she has dexterity but it is the strength issue.

She was crying so hard today that she was almost impossible to understand. Does anyone have suggestions for clothing and also are there medical ID Tags for ALS?

 

[jmaycavagnol]

Does anyone have experience with Life Alert or something similar?

 

[Katie C]

we found loose fitting...to the point of oversized... clothing was the easiest for Glen to handle. Sweat pants with no zippers or buttons, shoes with velcro closings. You can of course get madalert bracelets that indicate ALS. Glen didn't want to wear a medalert, but we convinced him to wear something called RoadID which many cyclists and runners wear, comes in assorted colors, looks more like a watch band, and comes with the option of engraving an 800 number on it that will maintain a record of your medical information.

 

[abbas child]

Here's another idea. Personal Assistance Voice Dialer, PA5800 Your friends or neighbors (whose numbers are programmed in, for a total of four numbers, but not 911 or fire or police depts.) get the call if allowed to ring long enough. Used briefly, it rings within the person's own home to alert the caregiver--which is by far what mine has been helpful in doing.

 

[jwife]

It is so nice to know that I am not alone! My husband was diagnosed in May 2009 and has steadily declined since that time. He has reached the stage where we are no longer just inconvenienced by the disease; but are now in medical mode with him no longer being able to use his walker, assist with transfers, etc. He just had his peg tube placed this week and the care and use of that has really made it seem that I am more health care giver than wife. That is one of the saddest parts of this journey to me. I greatly miss our old life. I do consider us lucky that he was in his middle 60s before the illness began. His sister died from ALS in her 40s. I know of young people with ALS and young children. My heart breaks for those families.
I am working now with my doctor to reach a good balance with antidepressants. This is my second medication and after a short trial, we are doubling the dosage. It helps manage some of the sadness and anger, but it doesn't totally disappear. Everyone stresses the need for "me" time, but that is so hard to find. Even when you learn to accept help, it doesn't always happen.
My suggestion is that you have a long talk with your doctor. I found them to be very respectful and understanding of the situation I was facing. Hopefully, they will work with you on finding a possible medication. Also, don't be afraid to let you friends and close co-workers know about your mom's condition. They should know how stressful your life is right now. My coworkers were so understanding that they wanted to organize and participate in an ALS walk-a-thon. They remain my personal support system even though I had to retire from my job to stay home with my husband.
Lastly, just hang in there & know you are not alone. This isn't an easy journey, but you have to take it one day at a time. Don't be so hard on yourself. You have every right to YOUR feelings. Hope this helps. My prayers are with you.
Janis

 

[jmaycavagnol]

Good morning.......Mom does not want to wear a medical tag but I am looking around for something that does not SCREAM "I have an illness" there are quite a few nice things out there but good gracious you would think it would be simpler to find and the choices of the medical alert systems is crazy. Of course, my concern areas (shower and away from home) are not addressed in one system. Talk about a business idea.....I emailed my brother to take my mom to get some lightweight pants and just to talk to her and he did but no offer to take her out shopping or anything like that.

Hi Jani....I am very sorry to hear about your husband but my goodness talk about love & dedication to retire from your job and stay with your husband. I have talked to some people at work about my situation but I have found that unless they have some experience with family illness most are not sure what to do or how to respond......this is a totally understandable reaction as I don't know how to act or respond most days either. I think though that people who have not been through it---they think that you just kind of "deal with it" and "get over it"---i don't think the day-day is on their minds....same with some of my friends. A few of my relationships have gone by the wayside because my "friends" have made my mom's illness about them? How does that work? I also have pushed a fair amount of people away and my general appearance is angry so I don't blame people for walking on eggshells around me. My boss is very kind & compassionate and my boyfriend is amazing so I do feel fortunate and blessed. We are going to participate in the local ALS golf tournament and the local ALS walks and this makes all of us feel like we are doing something "positive" about this illness when all we feel is just sadness and loss of hope.

Mom told me that her cortisone shot did not help her neck pain and she has problems moving side to side and I am scared that this is the beginning of the "floppy" neck. She has great days, then some good days and then some awful days....I wish for her to have a few okay days in there but it seems that we go from good to bad real quick.

I need to schedule my doctor appt but I am going to be honest....I am afraid of anti-depressants and anti-anxiety pills. I have had them before and they made me feel artifically happy and threw my body out of balance and excuse excuse excuse excuse excuse.......but I know that if I don't do something I am going to end up laying in bed feeling sorry for myself and then I get upset because why would I feel sorry for myself when my Mom is the one dying?

Sorry for the ramble.....

 

[dentists]

Hi. We are all sorry to hear about your mom but you are not alone in this as we say. We wish we are there to help you out. Just consider this as a challenge to yourself that you can make things work out on your own. We all share our times of having to stand up and be strong on our own feet.

 

[jmaycavagnol]

Hi everyone......Mom will be here for a visit on March 31. We have her scheduled with an Elder Care Lawyer and also her first appt with the Baylor ALS clinic. This will be the first time that I see her since she was diagnosed and I am concerned about seeing her and experiencing first-hand her symptoms and what it will be like every day. We are going to look at the apartments we found (hopefully she can go into an apartment for a short while before she has to go into assisted living). As much as I love my mom and want to care for her; I simply can't move her into my home....we would fight and argue and our relationship would just suffer so it is better that she move here but still live apart from me. She will only be ten minutes down the road and it is +55 community that is brand new so hopefully it will be okay. I will hire a nurse to come in daily to take care of her basic needs and then my boyfriend and I can attend to the rest...anyways..she will be here for 10 days at the end of the month to check things out and then go back to Indiana until her place sells.

I am worried I am going to bust out into tears when I see her and she will end up consoling me.....anyways, I just wanted to update all of those people out there who have been kind enough to read about and follow our story.

God Bless...