Need A Little Support Tonight.

[hope]

I am so grateful for this site and all the kind people that are here. I have been keeping a very positive attitude since my husband's diagnosis and have worked tirelessley to make life good for him and I. This illness is horrible, I cannot think of another word for it. It hurts so much. As I watch my loved one get sicker it just breaks my heart. Tonight I am posting for a little support, I hope it is okay to reach out.

Sandy.

[CindyM]

Of course it is OK to reach out, Sandy! You've offered support in the past and there is nothing wrong with asking for consideration when you need it. It is easy to get "down" from time to time. How is your PAL doing tonight?

[quadbliss]

hope,

I don't think of ALS as a terrible disease. Everyone is challenged with different circumstances during their lives. This just happens to be the one that is challenging Jen (my wife) and me. It rarely gets us down. We keep moving forward with our heads up, alert to opportunities to make the world a better place. Reality is not solid. The world is unique to each of us in the way we perceive and respond to it.:-D

Mike

[CindyM]

Hi Sandy- I want to re-phrase my question. I asked what is going on with your husband tonight but I really should have asked about you.

[sharona]

Hi Sandy,
Prayers for you & your husband. My husband is still waiting to find out what is going on with his body ,we go back to the neuro Jan 17th I read this forum many times a day I guess knowing that we are not alone helps.God Bless you .
Sharon

[TBear]

Hope:

It's okay to reach out... and it's okay to vent. Many of us have gone through this cycle before... and likely will again. This kind of moral support is what many of us are here for. So let your fingers dance!

T.

[Rhonda]

Sandy, I'll say a prayer for you,your husband and family. We all get down at times and we need the support of others. Thank God we have a place to come to to get that support. Take care of yourself. God Bless,Rhonda

[lunarruna]

Sandy,
This ALS is just the pits isnt it? Heart-breaking for sure. I know from your many posts what an amazingly strong, courageous person you are...how lucky your husband is to have you.
This past week we have been 'down' too. Seems the holidays gave us a brief distraction with some gift-buying and some visitors, now that they are over we realize that we are still on this sinking ship.
I find it so difficult to see my husband in pain and discomfort that sometimes I fear I cant stand it anymore. That is a big burden for us CALS to bear too....feeling that we have to make them comfortable, when the disease keeps throwing out new discomforts, sometimes it seems on a daily basis. Almost everyday I cry in the bathroom at some point because I feel so bad for his pain. I also hate that I seem to have to cause him discomfort so often, whether it is suctioning, or slinging him around or whatever, I feel so bad if it doesnt go well and he has even more discomfort. He is tougher than me and keeps me going---he often reminds me that 'it isnt your fault' and 'there is nothing you can do about it' when I am so down about not being able to 'fix' things for him.
Please remember that you are doing a great job in the face of an almost impossible task.
Sometimes I take solace in thinking about the fact that suffering is really an integral part of living, and I think about people all over the world, in Darfur, Iraq, and other war-torn areas, or areas of famine and poverty.....and then I feel less alone with our woes here. (But sometimes nothing helps and I am just heart-broken at the losses we are experiencing--and crying helps)
Peace to you and your husband...Beth (CALS to Shannon, dxed 8/04 at age 40)

[Paty]

My prayers are with you Sandy, I'm also down, must be these past holidays, don't know for sure; seeing my husband in bed, with a tear coming down his eyes, brakes my heart.

Sincerely,

Paty
Husband's caregiver
Baja California, Mexico:(

[hope]

Cindy,

That is okay. My husband is very ill. I am trying very hard to keep strong and take care of us. I think what is happening to me today is that I feel exhausted a bit. I feel guilty though when I feel this way. It is emotionally and physically draining. The physical work even though it is hard is not as hard as the emotional work. Trying to keep my husband' spirits up. He can no longer use his hands or arms very much and many other things are happening. I know everyone here is in alot of pain with this illness and I wish for a cure for all who suffer. Thank you Cindy for your kindness.

Sandy.

[hope]

Mike,

My husband and I also keep moving forward and I understand what you are saying. We do feel that this disease is horrible. It is loss after loss on a daily basis. My husband is a wonderful, caring, kind man who I think has a heart of pure gold. All his life he has helped many people and sometimes I ask, why? I know there are no answers. My heart goes out to everyone here suffering.

Sandy.

[hope]

Paty,

I am so sorry that you are going through this also. I can honestly say I know how you feel. The christmas holidays were painful and my husband also had tears. You are right when you say it is truly heart breaking. I wish I knew the right words to say to you.

Sandy.

[hope]

Lunarunna,

Thank you so much for your kind words. I know also how you feel. Some days I do not know where the strength comes from. My husband was a big strong man and to watch what is happening to him breaks my heart. I cry too. I sat in my laundry room one day and cried for a long time. My husband will always say you are doing a wonderful job at taking care of me. I always feel like I need to do more, I feel helpless sometimes. I thank you again for replying to my post. I know that today I have fallen down a bit but tomorrow I will pick myself up again and keep loving and caring for my best friend.

Sandy.

[hope]

Rhonda,

You are so right. This a wonderful place to be able to come to where you know everyone understands how you feel. Thank you for your prayers. Maybe this will be the year for a cure. My husband said to me tonight, honey it hurts to not be able to hold you with my arms and I replied saying honey you do not need to hold me with your arms because you are always holding me with your heart. Thank you again Rhonda for caring.

Sandy.

[quadbliss]

Hi Sandy,

I now understand that my comments above came off smug and uncaring. I would delete them if I could. Being male, I often jump in to try and fix things instead of working toward empathizing. Please forgive my non-caring tone above. I really do care about you and your situation. {Where is that hug icon?)

Mike

[hope]

Tbear,

Thank you for your understanding. It is nice to know there are kind people to reach out to.

Sandy.

[hope]

Sharonna,

Thank you for your kindness. I pray everything will be okay for you and your husband.

Sandy.

[hope]

Mike,

It is okay. You are entitled to say how you feel and it is okay. I have a different way of looking at this. Mike it really is okay to express how one feels, it may not be the same as how someone else feels but that is what makes us all unique.

Sandy.

[quadbliss]

Sandy,

Thanks for your understanding. I hope tomorrow is a brighter day for you and your husband.:)

Mike

[BWk]

Hope, You've been through a lot and nobody's made of steel. I'm divorced so I don't know what your situation is like, but I can imagine watching your soul mate decline into this state is very hard. I think about other people in the world who are suffering terrible at this very moment, but it is still hard when you are the one who is sick and you have to deal with all the stuff of this disease everyday and as you do as a caregiver and wife. I don't deal with things well either somedays and to vent or to seek support is helpfull. Take Care. Barry

[Al]

For the benefit of newer members you can edit your text or delete it by clicking on the edit button doing what is needed and save changes. Or let me know and I can delete it. AL.

[hkohlman]

Hope, I will keep you and your family in my prayers. Stay strong I know you and the lord can work together to help you make it through these tough times. God Bless! Heather:)

[emjoi]

Hi Hope.
Sometimes we are expected to do a Great Good Deed in our life. And this is yours, and it sounds like you are doing it well. One thing about this disease is that it strips away the peripheral stuff from lives and places before us the only things that truly matter.

It sounds like you truly love the guy and you are doing the best that you can. So be proud of yourself.

[cartman]

quadbliss

those of us who experience als and the mean nasty disease it is do not think you are smug and uncaring. we do realize that you experience the disease on a different level then most of us. you apparently have resources your finger tips to make the disease more tolerable. most of us quickly use up the financial nest eggs we had put away for our future and our care is provided by a loving wife, we watch her use her energy until it seems there is nothing left and they keep giving. we keep taking because there is no other choice. our loving caregivers reach the limits of their endurance and fade away for a few moments of solitude to cry and try to make some sense of this burden. we know that we have the solution, but the caregivers ask us to stay with them and we do. i don't quit trying because of my wife. i am blessed as all of us who have loving caregivers, they are what keep us going.

cartman

[liz]

Cartman -

Well said. Thanks.

Liz

[JMH]

You are so right. It is a horrible disease and no one should have to suffer with this. My dad is 77 and some people say...well, you're lucky you've had him this long. It hurts, I think, no matter the age or relationship you have with the patient.
My had has lost the use of his legs, left arm and suffers greatly with other symptoms. To him, he has lost his dignity and independence - this past year he has went from an active life to an invalid. He says no man should have to live like this. He is right.
My heart goes out to you and everyone else in this forum. It is difficult to put on a brave front as a caregiver - each moment that I spend with my dad is precious, but I think we are all crying on the inside.
Take care.
JMH

[Mike27]

Hi Hope
Here's hoping that today is a little brighter and better day.

Thank you for posting, by the way. As a PALS, sometimes I'm so wrapped up in my own predicament that I'm guilty of forgetting that my wife suffers every bit as much as I.
I think I'll take her out to a nice dinner and a movie tonight.

As Barry said, you CALS (that term seems so impersonal, but I want to cover everyone) are not made of steel. It's perfectly normal and healthy to cry. I consider it a way of washing away emotional pain when you are full.

Good luck, God bless and keep posting!

[CindyM]

Cindy,

That is okay. My husband is very ill. I am trying very hard to keep strong and take care of us. I think what is happening to me today is that I feel exhausted a bit. I feel guilty though when I feel this way. It is emotionally and physically draining. The physical work even though it is hard is not as hard as the emotional work. Trying to keep my husband' spirits up. He can no longer use his hands or arms very much and many other things are happening. I know everyone here is in alot of pain with this illness and I wish for a cure for all who suffer. Thank you Cindy for your kindness.

Sandy.

As a potential PALS I worry about the emotional and physical drain on those who might have to care for me. I take care of my Mom and it is lonely and exhausting! You are right that things don't seem so bleak to a garegiver who is rested, but it is hard to remember that at times. And I can see where you would want to keep your hubby's spirits up. He must be a wonderful man and I bet he is glad every minute that he has you! Makes me wish I lived closer so I could come in for an hour or two to give you a chance to go out for a bit. Hopefully you have someone who can do that for you?

[hope]

I would like to thank each and everyone of you for all the kind words and the support. It means so much. This is a wonderful place full of wonderful people. I am sorry that we are all in this. Knowing that I am not alone helps me. We forget sometimes when we get lost in the world of pain that we are not alone, there are caring, wonderful people all around us. Thank you everyone.

Sandy.

[RAidanM]

I will keep both you and your husband in my prayers this evening.

[dana]

Hi Sandy and others,

I also find this disease to be horrible, and possibly one of the worst things that could happen to someone (at least the form that my dad has). The only blessing is that dad is not in any pain. My dad has the rare dementia that can come along with the bulbar form. He cannot express what he wants or needs because the dementia has made it to where things just don't make sense to him or us. He is on a vent, which has prolonged his life, but has also made this end stage prolong too. He is beginning to lose the ability to walk and his arms are becoming very weak. When he stands, he is very hunched over and cannot hold his head up, so now he has to use the wheelchair. Along with all of this, he cannot use the bathroom without assistance every time. His hands are too week to use a urinal by himself and his sphincter muscle is so weak that he cannot push out a bowel movement. My mom cleans up many messes needless to say. It can be frustrating because dad will think he needs to use the bathroom many, many times throughout the day (both with urinating and bowel movements) and nothing will happen. I don't know if he just doesn' really understand what he needs and thinks it might be the bathroom, but it is very laborsome on my mom. This would all be so much easier if dad was clear headed and was thinking straight. The dementia has made it feel like we have already lost my dad and that he is stuck in this broken body now. It's horrible. If there is one thing that I could changed about dad's ALS it would be that he could still communicate with us clearly and tell us what he needs or wants. He just has this haze over his eyes most of the time, and it is hard to tell if he really understands what we say to him. At times, it is really hard to stay positive, but we all try our best. Dad's 53rd birthday was yesterday and we celebrated. You can't help to wonder though if this is his last birthday or not. I hope and pray that this new year brings some joy in our lives, but I definitely worry about what is to come.
Dana

[Al]

Hi Dana. You've been here quite a while and either said it yourself or heard it before but just know we are all here for you. It is a daily struggle no matter how good your attitude is but the strong survive. We have to be strong. AL.

[quadbliss]

quadbliss

those of us who experience als and the mean nasty disease it is do not think you are smug and uncaring. we do realize that you experience the disease on a different level then most of us. you apparently have resources your finger tips to make the disease more tolerable. most of us quickly use up the financial nest eggs we had put away for our future and our care is provided by a loving wife, we watch her use her energy until it seems there is nothing left and they keep giving. we keep taking because there is no other choice. our loving caregivers reach the limits of their endurance and fade away for a few moments of solitude to cry and try to make some sense of this burden. we know that we have the solution, but the caregivers ask us to stay with them and we do. i don't quit trying because of my wife. i am blessed as all of us who have loving caregivers, they are what keep us going.

cartman


Cartman,

I completely agree with your sentiments about your wife as a caregiver. My wife and I are in the same boat, but I don't want people to get and wrong idea. I intend to keep sharing my positive attitude because I don't like to see people suffer. I think it is important for people to understand that my outlook doesn't come from the pleasures of wealth. I too have used up my nest egg. I live off SSDI, and all my medical is covered by Medicare and Medicaid. My computer interface hardware and software is all on loan from the ALSA. My wife and I have the same physical hardships as most of you, but we choose to look at our situation from a different perspective. You can choose this also. I am only trying to help people see that they can still enjoy their lives. This has nothing to do with material objects.

Mike

[liz]

Is it just me or is there a dearth of postings from husband-caregivers on this forum? I wonder if women with ALS make different decisions about life sustaining technology than men based upon the spouse's determination to provide care. Or maybe these guys just aren't speaking up?

Enlighten me please.

Liz

[trustinggod]

Hi Liz,

In answer to your questions about husband caregivers, I believe that the male of our species have a much harder time asking for support and care. I also believe that in some ways it is harder on the males because from my experience, men feel a need to "fix" things for the people they love. With ALS that is not possible.

As I cared for my friend over the years I watched her husband install handrails, change out toilets, invent and install a lift for her wheelchair, remodel the master bath so that a shower wheelchair could roll into the shower, and so many more things like these that he was eager to do. BUT, he was uncomfortable with laying in bed and watching a movie with her or to share his feelings about what was happening. I remember his anger causing him to be too rough when he transferred her and his words too harsh.
He would explain to her that he was angry with the disease not her but this never took away the emotional pain she felt from his actions or words. Because he was unable and unwilling to verbalize his emotions or cry with a friend he stuffed the anger and it usually caused him to be unable to feel loved or supported. I remember him feeling guilty a lot when he watched me handle his wife with gentleness. She loved her feet rubbed with lotion and her neck massaged. I did this almost every day. He just could not do this. I don't understand it. I know he loved her greatly. I know he would have traded places with her if possible. Why could he not give her the simple pleasures she so desperately desired?

[dylan_sanjose]

I am a first time user and im replying to your post because it said you need support. Apparently i need support too...cause right now im so mentally and emotionally desperate that im willing to look up als on the internet. I need to talk to people about als and i would like you to email me back and tell me how this thing works if possible, but if not pass this message to someone who will.

I'm 33 yrs old, i have a wife, a 7 year old son, and a 2 year old daughter that are suffering because their father cannot handle it. I am an only child, im very close to my father(drinkin buddies) and 4 yrs ago he was diagnosed. He's now been in bed for 3 months after falling and breaking all of his ribs. Tonite he was sent back to the hospital for the umpteeenth time in 3 months. He cannot talk(for years) cannot eat, cannot go to the bathroom by himself. Tonite he was sent to the hospital again....The last time i "comunicated to me" he spelled out(on my little childs lettering board" ITS OK, IM TIRED. IM GOING TO BE LEAVING. i said not yet. He said SOON. I think this is it and i half of me thinks its a good thing. Im devasted. forward this to someone who can explain how i can chat....we cant be the only ones cursed with such a brutal ugly discusing thing ....im going to get another beer....but forget that for now.
duartequila@cs.com

[hope]

Dana,

My heart goes out to you. I wish I knew the words to say that would make you feel better. This illness hurts so much. Please know that I truly understand how you feel. It feels like there is a cloud over us every moment and we try so hard to bring sunshine. Some days are harder than others, some days we laugh and we can laugh at ourselves. Some days we just cry and hold each other tight. I have learned that it is important to let yourself feel what you feel and that it is okay. Take care.

Sandy.

[hope]

dylan,

I am sorry you are suffering. This site has wonderful, caring people, reach out and you will find the support. I am very grateful for all the kindness shown, especially when everyone is suffering also. I have said this before but it is true, I wish I knew the right words to say. Keep fighting, never give up.

sandy.

[Lynn555]

I now understand that my comments above came off smug and uncaring. I would delete them if I could. Being male, I often jump in to try and fix things instead of working toward empathizing. Please forgive my non-caring tone above. I really do care about you and your situation. {Where is that hug icon?)Mike

Mike, I just wanted to agree with what others have said here, that you do NOT come across as smug or uncaring whatsoever. In fact, I love reading all your posts, because you have a very healthy, positive, spiritual, and unique perspective on things. And what you say helps shift things for me. It's inspirational and uplifting. What you say helps me realize that there are other ways of seeing things and dealing with things. So please don't ever feel bad about your opinions or posts or perspective... I find it so wonderfully refreshing to read what you say. I know that everyone is in a different place with things, and sometimes things can be horrible and overwhelming, and I certainly don't mean that others are any less or worse because they may feel miserable at the time and may not see things the way you do, because we all are there at some point, but I just wanted to let you know that I love reading your messages and seeing how things can shift. It puts me in a much better place in being able to deal with my mom (she has progressive bulbar palsy) in a healthier, more positive way. Thank you, Mike! :-D

[quadbliss]

Thank you Lynn :)

[quadbliss]

Dylan,

One of the fundamental characteristics of every object in our universe is change. From the individual cells in our bodies, to the stars that produce and sustain life, everything is in perpetual flux. Nothing stays the same for even one second. If we understand and accept this feature of reality, we will be happier and more content with our lives. If we deny this, or try to cling to the way things “should be”, we will suffer needlessly. This is especially true when confronting a progressive disease like ALS.

I think it is important to show support to your father and his wishes in any way you can. It is his decision to leave this life, and you should give him your blessing. It will be hard, but years from now you will look back and feel right about being strong and supporting him during this difficult passage. It will make you a better man, and be a good example for your children to see.

Be strong and stay present,

Mike

[CindyM]

Hello Dylan. You are right - watching and caring for someone with a terrible disease is awful. The sadness of it all weighs you down sometimes. The only thing I can say is to take good care of yourself. Get lots of rest, exercise as often as you can, eat a healthy diet - that kind of thing. You've probably heard all this before but I find my coping skills go way down when I forget to do these things! Regards, Cindy

[jarobco]

Hi Sandy. I have MND. I have a great support team where I live. But you have to look after yourself as well as your husband. Please have a look at my web site to see how I am dealing with MND.
http://robertmnd.blogspot.com

Robert ( New Zealand )

[hope]

Robert,

Thank you for replying to the post. It is great to have a wonderful support team. It makes a difference to have people who care. It is a painful illness to be in for our loved one and the family. This site is a wonderful site, to be able to come here and share with others and help each other is what life is all about. Take care and thank you again.

Sandy.