Need A Little Support Tonight.

Status
Not open for further replies.
I've been having a hard time lately too

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
 
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.
 
cartman said:
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
 
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
 
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?
 
First time user

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.
[email protected]
 
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.
 
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.
 
thank you Mike

quadbliss said:
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
 
Thank you Lynn :)
 
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
 
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
 
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 )
 
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.
 
Status
Not open for further replies.
Back
Top