How much longer do we have?

Jason's onset was December 2009 and he was diagnosed April 2010.

He can't bear weight on his legs now and needs the pattient lift to get into his motorized chair. He can't feed himself. He can't even raise his arms to push his glasses up on his nose when they slide down. He can't even work his fully electric hospital bed. His skin is breaking down and he has bed sores. He gasps for air at times. He can't work his dynavox because the palm of his hand drags across it and he can't reach the top of it. He can't formulate the muscles around his mouth to suck liquid down a straw. He chokes and aspirates alot. He can't cough things up on his own. Speech is gone other then grunts and groans. He has lost control of his bowels. He uses a BiPap machine, as well as a cough assist and a suction machine. He has a feeding tube in place. Currently I feed him by mouth, but more and more various foods are problematic and so we avoid various foods.

Its hard cause no longer can he kiss me without his mouth open (as he can't get it shut). He can no longer put his arm around me to hug me, reach out to hold my hand, tell me he loves me.. and the list is endless.

His papers from his doctors say he is progressing more rapidly then the average ALS patient.

With all that being said.. how much longer do we have together? I just want to be realistic. Are we looking at a few months? More? Less?

He also does not want a trach or vent.

Thanks.

~ Becca

It is really impossible to guess how much time is left, as everyone's ALS is so different in onset and progression. It does sound like your husband's progression is relatively fast. We have been told that my husbands ALS is progressing fast also, but he was diagnosed exactly two years ago and is now almost totally paralyzed. We started hospice this week. I thought that would be an emotional transition, but it has been only positive and very very helpful. We have five children ranging in age from 10 years to 9 months and I really need the help the hospice nurses provide. I know how hard it is to be unable to give everyone the attention they need. I have felt many times that I am not taking care of anybody very well because my husband's care takes me away from my children, and my childrens' constant need keeps me from spending time with my husband. You learn to focus on what is really important, prioritize your time and cherish the rare times when you can all just sit with Daddy and watch a movie or play games and be together. We use the peg tube exclusively now. That has been a real blessing to feed him without fear of choking. He also spends all of his time in a hospital bed (sleep number mattress). Which has been great- only this week did we find a very small bedsore and started having him sit on a sheepskin which helps a lot. The hospice nurses also gave me some very good dressings and ointments which have helped tremendously with his comfort in that area.
He uses his eyes to control the dynavox- it sounds like that is what you guys may be ready for. Only it is hard for him to use it sometimes because when he is really tired his eyes don't focus too well. But at this point I usually know what he needs me to do by the way he looks at me or his hands or whatever it is he needs. And other conversations can wait until he is feeling better.
He wears a bipap all the time and we use the cough assist and suction machine 2-3 times a day.
We try not to worry about how much time is left. I know every day must be a struggle for you. Do you have family members who can come help watch the kids? That was really hard for me in the beginning. And even now I am most comfortable with my mother or my sisters watching the kids. There are some family members on my husbands side who have been forbidden to watch my kids. You just have to do what feels right to you. And I don't worry about offending them anymore. Some people will be offended if you do not accept the type of help they are offering. You can't help it if what they are offering is the opposite of help.
I just realized I am replying to your other post here as well. Oops.
Try not to worry about how much time is left. It is so hard to know- we have things in order now so that we can continue as we are for as long as my husband is with us, but we are also ready to transition after he is gone. (We will have to move because of financial and family reasons)
Take care
Elizabeth

I'm sorry about what is happening. Only this last Sunday evening my husband got some virus. I was up all night so he wouldn't aspirate vomit. He has DNRs and would be happy to meet his maker - he wants to live just not like this. IF I couldn't clear the airway I would let him go. He's better now other than still dehydrated, better in the sense he doesn't actually feel sick other than even weaker. this disease is ridiculous. i guess we all just need to live for today. i am so sorry and pray for youa nd your family to have strength and courage.

Mark's wife said:

It is really impossible to guess how much time is left, as everyone's ALS is so different in onset and progression. It does sound like your husband's progression is relatively fast. We have been told that my husbands ALS is progressing fast also, but he was diagnosed exactly two years ago and is now almost totally paralyzed.

Click to expand...

Same goes for my mother, her ALS is progressing very quickly. She was diagnosed last July and is now completely unable to move, except for slight movement in her right hand. (A few inches at best, and very slowly and carefully to even do that.)

I've noticed a lot of people on the forum explaining that their swallowing and talking were the first to go, but for my mother she is still completly able to talk and eat (although it wears her out after a while) although her limbs are near useless. (Her legs are also stuck in the sitting position and will not un-bend.)

But then there are people like Steven Hawking, who I believe has had this disease for.. fourty or so years? Very uncommon, but not impossible.

Jason's Dream said:

With all that being said.. how much longer do we have together? I just want to be realistic. Are we looking at a few months? More? Less?

Click to expand...

What does your instinct tell you?

And I second the recommendation to look into hospice.

Definately get a order for hospice. My Dr. told me today he does not think I will see the end of 2011. I am so sorry your husband is progressing so fast too. I will say a prayer for you all. Enjoy each day you have, it is a gift.

Thank you for your replies. Both his GP and ALS doctor have done the referrals for it. We are just waiting for the last equipment (the eye gaze attatchment for his dynavox) before we can get him into hospice. It will probably happen within the next two weeks. I am actually looking forward to the help, to be honest. I think there is a stigma to the word "hospice" as there is one to the word "cancer". Like its the last taps. When people ask how he is doing and I tell them where he is and what is next, its like you can hear a pin drop. Honestly, I am hoping he gets to hear his daughter say "Dadda", to be here for her 1st birthday in November, to see his son off to his first day in kindergarten (he is 3 now), but honestly, I wonder if he will make it to see his 38th birthday at the end of May.

I have an embarrasing question. My s-i-l was diagnosed 1 year ago with ALS. However, he has had symptoms for 3 years. My daughter is weary. Her husband was recently told his testosterone level was low. He has begun the testerone shots and started to desire intimacy and has to wear his bipap. It is very trying for my daughter. Does anyone have input?

nursemary.. you really should start your own thread to get the responses you are looking for.

Nursemary, Hi... I would let your daughter make this decision.

Becca, I am glad you're going the hospice route and getting some help in your radar. As far as people asking about it and becoming upset, I wish I had an answer.* But I agree with your thinking entirely. It's nearly always a very positive thing to have their help.

*actually, I try to avoid them. I have some friends who always break down when they visit or call.

Ann

I also am asking... how long. My mother was diagnosed in July 2010. They said she was in the 10% where the ALS starts from the head and moves down. She has a feeding tube. She wears the bypap machine about all the time. We got a hospital bed about 3 weeks ago and also an electric chair and a lift chair. My dad is taking care of her 24/7. She can no longer stand. She cannot use her hands any more. She lost her speech about 3 months ago. Also one of her legs doesn;t bend. She has a cathiter and doesn;t have much control of her bowels. We have had Hospice since January. It seems that Hospice doesn;t know much about ALS. I had an Aunt to die of ALS about 20 years ago. It all seems to be different with everyone. Are there any other symtoms that will come closer to the end. I wonder if she will make it to Mother's day. We also have a DNR and she is ready to meet HER SAVIOR. I just worry so about my dad. They will be married 55 years in July. I live out of state, but my sister and brother are there to relieve daddy when they can, but he is so stubborn. Now we are trying to get advice about her bathroom habits. Daddy just cannot sit her on the potty chair anymore and with a bedsore, it sounds like to me it would be better just to let her lay without anything on and a blanket over her with the "cloths" from the hospital under her.

If anyone has experienced the last days, please write back.
I just found this forum today.

pdudley ~ I can understand wanting to relieve your father, just know he is where he wants to be, as that is his sweetheart. I wish I was soo lucky to have that long with my husband. We probably won't make it to our 10 year anniversary. As far as bodily functions, my husband has lost control of all of that. So we have him in a hospital gown with a sheet draped over him and then have a matress pad underneath him. Underneath the matress (bed) pad we have a "draw flat sheet". We use this sheet to flip him on his side to wipe him, put "bag balm" on his bed sores, change his bed pad, draw sheet and fitted sheet. My husband can't push out the poop, so I put on rubber gloves and fish it out, then use cottonelle wipes to finish wiping the poo, then do a soapy wrag, a rinse rag, and a dry rag to his butt. For pee, he uses a urinal, unless he pees while pooping, then we just change everything. To get mu husband in the chair we use a series of rolls to get the patient lift sling under him, then hook it to the lift and lift him to the chair and visa versa back to bed. This is really wearing him out, So I doubt we will be doing this much longer.

Nursemary ~ I'd say that would be between your daughter and her husband. My husband and I still want to, but are past the stage to be able to do that. Ultimately your daughter is probably mourning the various parts of thier relationship already gone, yet its hard, cause he is still there. I've been sleeping alone now for nearly a year. My husband can't grasp my hand, put his arm around me, close his lips together to kiss me, nor say I love you anymore. Its quite devestating, yet still try to keep your sense of humor while caring for the shell of the man you married, all the while knowing he is trapped inside.

Ann ~ Thanks hon. Wish we could avoid his family all together.

pdudley, I really am sorry your mother's progression is so fast. I am very glad she knows the Lord. I have very little torso strength myself and have trouble balancing--I think your mother should lay on a throwaway pad with the blanket or cover over her. ( I see that Becca has posted.)
Ask hospice about a product that can be applied to keep urine/feces off of her skin. I believe there is one.

She may sleep more toward the end, and her breathing may change. Also she probably (not always) will not want anything to eat. Hospice will know--they see the end signs a lot. But there's no hard and fast rule--she may quietly go in her sleep. And your father is doing what he wants to do. Don't worry about that. He may "need" to do this for her. God bless you and all your family.
Ann

You can go to your local hospital. Patients that are transferred from one hospital to another, are changed into the next hospital's gowns. The transfer gowns can't be worn or reused in the new hospital, so they are stored. We got 5 for free.

Hope this helps.