I'm new & have a question

[Mary Helen Barr]

Believe it or not, my memories are NOT AT ALL horrible. I'm so glad that I was able to help. Sure, it was difficult, but I have a supportive husband and teenaged kids. Others would say " I would never have my daughter doing what you are doing". Well, then I say that's a shame. I'm sure my father never thought his daughter would be doing the things I was doing, but really, it did not give me bad memories. I wished while I was doing all the caregiving that I had more help, but I was still glad to be able to be the one. My father had total confidence in me. I was the only one able to move him. Others either dropped him, or were completely unable to move him. For about a year, the only time he ever was moved was when I was there every morning. Even the professionals were unable to do it. I didn't understand that, but that's the way it was.

The caregiver develops a special relationship with the PALS that others couldn't understand. I still have people telling me how stubborn my dad was in not being willing to go to a home. I disagree. If my dad had WANTED to go to a home, that would have been different, and we would have gone that route. However, it was so important for him to be at home, so I thought it was important, too. I feel like it was a gift. He's been gone for one month, and I wish I could still take care of him. While it was going on, I wanted it to be over, but now that it is over.....

Anyway, don't let the fear of bad memories for you family keep you from accepting their help if they'll give it. I don't have a single bad thought of unpleasant duties that I had to do--just of being able to help my dad.

 

[Icanmanz]

Mary Helen all I can say is you are a genius. May God bless you, for being a CAL with a big heart. Posts like yours make my day, and I keep a little smile now and then. Thank you so much for sharing such a wonderful post. Again, God bless. May your sweet Dad rest in peace.

Irma

 

[quadbliss]

Hi ilgal,

I used to think the same way you do. Of course, every PALS and their family dynamic is different, but I sat down with my wife (many years ago) and had a heart to heart about this subject. I was relieved to learn that she loved me very much, and was not ready to lose me. She was willing to do whatever it took to keep me living as long as I was happy.

I also make an effort to be pleasant, and always emanate good energy. In this way, I can contribute to every situation in a positive way. I meditate daily to accomplish this. One side-effect of the meditation is that I am in a nearly constant state of inner peace.:-D

Mike

 

[Lorie]

Thank's Irma and All

thank you Irma for the nice thoughts. I am dedicated to Tim and all with ALS. I couldn't imagine having this disease and not having somebody that is Caring and Loving. My Dad died of Diabetes related illness. My Uncle died of cancer a few years ago and I was the only one there for him till death, I was there. I know he loved me for it. My brother-In-Law and Nephew died of Heart disease. This all was within a few years. And then Tim has ALS! But there is no Cure, we know. All of the others have Treatment and Hope.

We have Faith, Love, Support and each other. We all want Hope and a Cure for ALS.


I takes a Remarkable person to do be a Care Giver and a Advocate. We are not perfect, We do get tired. We get Depressed and Emotional. What I here from Tim the most is. Thank you, if I could do it my self I would. I know he would. And he would do it for me.

As we deal someway with this Horrrible Disease, I have to find something good out of it. Thats why I am involved with the ALS Assoc. and MDA. They are of great help to us. I have to channell my emotions in to something good. I want to help people, not just Tim, because I know we are not alone. I will be participating in an MDA meeting tomorrow night. Instead of complaining I want our voice heard and to be able to participate in doing something about it.

Lorie

 

[ordinarygirl]

I hope everyone understands that I love my mom so much & am thankful that I've been able to help take care of her. Sometimes I am an emotional mess because of all the stress & I felt I could vent here. I know many of you understand & I'm glad to find a place to let it out.

I hope it didn't sound like I just want Mom to die. It's just that I know how miserable she is & I'm ready for her suffering to be over. The stress can sometimes be overwhelming, but I wouldn't want her to be anywhere but home with her family taking care of her.

Mary, I hope you can find peace. I know that I'll feel the same way when Mom is gone. I'm sure your father knew how much you loved him & was so proud of you for taking care of him.

Al, thank you for your post. I try to put myself in her position & I do have great compassion for her, but I let my impatient human nature take over at times. It's helpful to hear the other side's perspective & it makes complete sense. I'm going to try harder to not get frustrated with her.

Igal, please don't let my frustration make you think you'll be a burden. My mom never wanted to feel like she is & I have always told her that she is not a burden. This disease is a burden to her & she didn't choose it. We all love her & that's why we are taking care of her. It's incredibly hard to care for her at this point, but I do think her personality plays a great part in her being so demanding. She is having to learn patience with us as we learn to be patient with her.

Thanks to all of you who have posted. It helps to know others have felt the same. I feel guilty sometimes for feeling the way I do. I really think the end is near & I don't want to have any regrets when she's gone.

 

[Icanmanz]

Hi ordinary, I just read your post. I had to read it more than once. It brought me to tears, really. We all know you love your mom, and I really do know how badly it hurts to watch them change. It breaks your heart. When my son was ill, I spent many a sleepless night. I'd go to bed crying, and wake up crying. It was so painful. My sons (it was sons then), and my husband begged me to go to the doc, and I refused. How could I pop them anti depressants, and pretend that everything was alright? Deep down I knew that my son was dying a slow horrible death. 15 months of pure hell for him, and for me, too. I hated that damn ALS, and I still do. I just could not allow myself to walk around like a robot, pretending. I am sorry, but that's not me.

I wish I could be of some help to you, but I just cannot think of the right words. Just love your mom, tell her you love her, hold her, give her a little kiss now and then. You see, when my son passed, it happened so unexpectedly. I thought he was going to be around a little longer, but it did not happen that way. I would go in his room to check on him, if he was awake, I used to bend, and kiss him on the forehead, smooth his hair, expressed my love for him, and I would pray beside him. Something told me the end was coming, but I did not know when. I really feel for you, may God help you through this, and amy He make your mom's departure peaceful. He will take care of you, and your mom, trust Him. Take care dear, and God bless. Keep us posted.

Irma

 

[CindyM]

I hope everyone understands that I love my mom so much & am thankful that I've been able to help take care of her.

We understand. You love comes shining through your posts. It is just that ALS puts everybody in a bad situation. I am glad that both PALS abnd CALS feel free to vent aroudn here.

 

[MtPockets]

I just wanted to say I am so proud of you and all the stories you have shared with us. In this day and age in which we live there are still people who love and give of themselves beyond imagination. In a world where all we hear about on the news or in the papers is the negative things about our society in which we live, THERE ARE ANGELS AMONG US. You.......

God Bless
Capt AL

And you are the hand of God extended

 

[ordinarygirl]

Irma & Al, thanks so much for your sweet comments. It truly means a lot to have people who understand.

 

[jdale949]

In the same boat!

Dear ordinary girl,
My mom also is in her last stages of ALS. There was a time a few months ago that she seemed to be needy but it didn't last very long. She has been an excellent patient considering her circumstances. Still says thank you when you do things for her but it is more of a grunt now. She still smiles because that is basically all she can move. So I haven't had to deal with a lot of demands as you. I know it is hard though. I have had to walk into the other room and have a good cry then I would come back and go at it again.
Do not feel bad for wanting this to be over. No one likes to see someone they love go through this. I feel the same way about my mom. I feel like if she can't be cured then please Lord take her now so she can be at peace. I would rather suffer her loss than for her to suffer this disease anymore. She was always such an independent and active woman. She won an Idaho beauty pagent, she sang in 3 different languages, and she was a director of social services for many years not to mention a devoted wife and mother to 5 children and 2 foster children. But besides all that, just like all our mom's, she was just a good person.
Please keep in touch because it sounds like our situations are pretty parallel.

 

[Gina]

Hello,to all i have just read this entire thread and i am just so overwhelmed by the honesty,beauty,loving nature,acceptance and guidance .....i could go on and on....I dont believe thier could be another group anywhere that could be as wonderfull as the people on this forum........God Bless each and every one of you ......AL & Cindy thier must be some secret magic formula that you are using because you have nutured this forum to become one of the most peacefull places on earth to be!.....Gina

 

[CindyM]

thier must be some secret magic formula that you are using because you have nutured this forum to become one of the most peacefull places on earth to be!.....

Thank you Gina. This is the goal to which we aspire! It is not always easy. Sickness, and coping with sickness, makes some folks strike out at others. It is sad when that happens but unavoidable, I guess, human nature being what it is. Our "success" has more to do with members like you who understand that it is OK to vent and equally important to support each other.

 

[Edith]

I just read through this thread and found myself in what you people were saying. My mother has ALS and it is quite advanced. My brothers and sisters have taken care of her mostly because I live in another town, but I have been their relief care quite a few times so I can so relate to what you are saying about how hard it is to watch someone go through what my mom has had to deal with. Yet she has accepted it all with such grace. The only part she really had a hard time accepting was when she realized that she was not going to be able to speak. She was really frightened and now gets so frustrated and cries when we do not understand what she is trying to communicate to us. God, how I ache to hear her voice or feel her arms around me. When I would visit her before she got sick, we would always hug and kiss goodbye. I remember the first time I put my cheek to her lips and realized that she could not kiss me goodbye. We would call each other every day and talk for hours. The first time I got my phone bill and there were no long distance calls, I cried and sobbed. I visited with her day before yesterday and she spelled out that she was so tired of this, and yesterday she "told" my brother that she wished she could die. I love her with my whole heart, but if she passed away tonight, I would be happy for her because she does not want to go on like this. And yet I wake in the night with that awful panic that this is really happening to her and I can't bear the thought of her not being there.

 

[Paty]

Hi everybody on this thread

As some of you know, I lost my husband to A.L.S. two weeks ago (tomorrow), I will never regret taking care of him for two and a half yrs. the late six month's we spent at the hospital after he having a traqueostomy and gastrostomy (neither of which he wanted at the beginning), when he started gasping for air, the night of June 30th, my son being a doctor told him and me that we had to take him to the hospital for these procedures; at the start he was refusing but as he kept on having problems to breath he asked us to call an ambulance.

Two days after TQT was done and was connected to a ventilator he told us (using our usual alphabet). that this had been a mistake, down here in Mexico there is no such thing as LIVING WILL, (although it was just passed by D.F. Congress Men and it was approved at our capital), though none of our states have gone through this, if you do such a thing as to disconnect someone of the ventilator who has not been declared with(brain death), you go to jail.

Sometimes it was exhausting, we lived inside our house, me going out only to buy groceries, (across the border, to Calexico, Cal.) I didn't get much help, since my only family are my son and daugher and their spouses, the four of them working; so could only get help from my son to bathe him when he could no longer move or to sit him on his wheelchair; here in Mexico we don't have any such thing as ALS or MDA Associations, so there is very little knowledge of A.L.S.

There's so much that I have on my mind and cannot put into words; what I can tell everybody here is TO BE THERE FOR YOUR PAL, NO MATTER HOW YOU FEEL, THE TIREDNESS, THE BACKPAIN WHEN YOU HAVE TO CARRY HIM, TO HAVE YOUR HEART BROKEN KNOWING THERE IS NOTHING YOU CAN DO FOR HIM.

I THINK NO HUMAN BEING DESERVES THIS DREADFUL AND HORRIBLE SICKNESS, MAYBE I AM WRONG, THERE ARE OTHER DISEASES SUCH AS CANCER AND SOME OF YOU I KNOW HAVE HAD EXPERIENCES WITH THEM.

FORGIVE ME IF I DIDN'T MAKE MYSELF CLEAR, MAYBE MY ENGLISH ISN'T AS GOOD AS I SOMETIMES THINK IT IS.

MY PRAYERS WILL ALWAYS BE IN MY HEART FOR PALS, CALS AND THEIR FAMILIES AND FOR THOSE ALS RESEARCHERS (LIKE POPS FATHER), WHO ARE TRYING TO FIND A CURE.

WITH LOVE,

PATY
CALS TO LATE HUSBAND JORGE
BAJA CALIFORNIA, MEXICO

 

[nspaul]

Hi Ordinary Girl,

My father has gone thru the same things. He was hard to satisfy but our MD prescrived an antidepressent and it has helped a great deal. He is quieter and less demanding. Unfortunately i don't remember what is was but my mother is better able to care for him and he is calmer. I understand she does not want meds for religious beliefs, has she reconsidered or have you thought about it. Regardless, I hope your faith sees you through the hard times ahead. It will not be easy. My heart goes out to you, and I'll pray for you. It is not easy being a caregiver and watching someone you love fail. I also hope at times that things will not drag on. My father never wanted to be like this and he is suffering his loss of independence and dignity.

Take Care
Paul