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Mark's wife

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Joined
Jun 3, 2010
Messages
4
Reason
CALS
Country
US
State
AZ
City
Mesa
Hello everyone,
I signed up here after my husband was diagnosed in March of 09 but I have never posted before. He is 32 and can only move his head a little and can blink, smile and mouth some words. He uses a dynavox to communicate. He spends most of his time in bed because his power chair is not very comfortable for him and he can't drive it anymore anyways. He wears a bipap 24/7. He needs the cough assist and suction every hour or so, sometimes more often. He got a peg tube about a month ago and I feed him whole foods blended in a vitamix. We have five children, the youngest of which is 8 months old, but I have always been his primary caregiver. His parents and siblings have given a half-hearted effort to learn how to care for him and give me a break, but it has always been a disaster and has come to the point that it is no longer safe for me to leave him for any length of time. The hardest part for me is not being able to spend as much time with our children. My mother has come and stayed with us for weeks at a time and often takes the kids home with her when she goes home since she lives several hours away.
Now we are coming to the point where his doctors and nurses say he is "critical" and needs a vent and though he has said he wants to get one eventually, he doesn't want one yet. I don't know if he is reconsidering his decision or not, he is really reluctant to talk about it and it is hard for me to bring it up. I am afraid he will either have an emergency with the bi-pap or his dynavox while I am sleeping and we will not make it to the hospital (you can't just jump in the car and go).
But at the same time I don't think I have any more to give if he does get a vent. I am fiercely protective of my children and still nursing the baby. But I don't see how it is possible to care for them and my husband at the same time. We are just barely making it work as it is and my mom does a lot of raising them for me when I just can't leave him for a minute when they need me. But I know he is not letting his family anywhere near him. They are totally incompetent.
I am also getting a lot of stress from his parents wanting him to put in writing just how often they will see our children and all the things he wants his parents to be involved in their lives after he is gone. That whole scenario makes me crazy because they are acting like this is a pending divorce and they have rights to my kids. Of course they will always be a part of our lives, but I will not be made to feel I have to hand over my kids to them every other weekend whether I want to or not.

thank you for allowing me to vent and reading this far. I am just wondering how those with young families deal with everything, not to mention how do you tell your little kids what is happening to their dad? Just how intensive is a vent and does anyone think it is possible for to continue doing everything?

Elizabeth
 

AKjo

Distinguished member
Joined
Nov 3, 2010
Messages
390
Reason
Lost a loved one
Diagnosis
09/2010
Country
US
State
AK
City
Anchorage
Elizabeth, I don't have any answers for you, but you have my utmost respect. My 3 kids are all grown, and my husband can still walk. I cannot imagine doing what you are doing and have little ones to care for at the same time. Your husband is a lucky man to have you. The only advice I can think of is if you do have a crisis with the bi-pap, call 911. Do not try to transport him yourself! Is there anyone, maybe a healthcare type person who could talk to him about the vent? Hang in there.

Jo
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
992
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
Whew you have a lot on your plate. Bless your heart. My husband and I have never talked about him losing his speech, dynavox, or peg tubes, venting. I know I shoul talk to him about it, but i feel like he will give up if he knows all this. How are you getting any sleep, rest...ect? I just feel so bad for you. One of our long timers passed away this week, but he was vented I think his pages may still be up. Look for Joel.
 

sadiemae

Extremely helpful member
Joined
Sep 20, 2009
Messages
2,527
Reason
Lost a loved one
Diagnosis
09/2009
Country
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State
NV
City
Reno

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,782
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
Elizabeth my heart breaks for you. And as for your in-laws, in very kind words, I would tell them to put it where the sun doesn't shine.
 

arkallen

Distinguished member
Joined
Mar 8, 2009
Messages
268
Reason
Other
Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
Elizabeth,

My, what an enourmous load you have on your plate! I have six children, but our youngest is the only one still at home and she is six. I just cant immagine how you are managing everything; and I certainly cant comment on the difficult questions you have to find your way through. I do hope that you will find time to visit the Forum now and then, both for the abundant resources that are here and also for friendship and care.
 

kelly

Senior member
Joined
Oct 6, 2006
Messages
672
Country
US
State
ny
City
saratoga springs
Hello Elizabeth,
First you are an amazing woman...you are juggling more than most of us can imagine. I only have two kids and have difficulty fitting everything in a day. Family is so complicated when it comes to ALS. I have realized that I just point blank expect to much from them. My friends are the ones that are present in our every day life. They live through all of our trials and tribulations. His parents probably feel totally out of control...and want to fix things. The problem..is this one is a toughy. You know what.....if they want him to write up the parents involvement..who cares....let them. I know that sounds crazy, but you can't use your energy worrying about that! We are a 5 years into this disease....and my husband has decided that he does not want to go on a ventilator when it is time. As far as your children..you obviously are surrounding them with the love they need...the rest will fall into place. Your hubby is so young.....please stay strong...and keep fighting. Hugs from snowy Saratoga!
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,602
Reason
PALS
Country
US
State
MA
City
Southborough
My heart breaks for the situation you're in Elizabeth... isn't there some way to get a caregiver in even a couple hours a day to help you out? That way you could take a break, have a nap with your baby, or chase after your little ones...

Was your husband in the military? Will SSI Disability provide anything for a caregiver? I'll be needing some of these answers for myself in the future, but at the moment I'm still mobile. My children are 11, 14 and 17 now, and the 2 boys don't know my diagnosis yet, but they do know that Mom's legs aren't going to get better. I cannot imagine how torn I would be if they were still babies. For your own sake, I hope you reach out to someone local that can help you out more! Hang in there and stay strong...

Helen
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
661
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
I send my highest respects to you Dear, as well as to Mark. You make me feel very ashamed that I think I have too much to do.
I can only relate as a caregiver before, that this will one day come to an end. Hopefully release will follow... and you won't have any
regrets because you have done your very best and then some. Life is tough and your family knows it! Can you get help from friends,
or a church or hospice? He could plateau, but I would think his disease would be considered terminal even if he survives quite a while.
I nursed my six children. You couldn't do anything more giving or personal, or better for your baby. I would just matter of factly present
things to your children as calmly as you can muster. Children follow the mother's lead. If you are okay, they'll be okay. Don't make any
promises to them that Daddy will be fine, but tell them there is a hereafter where there is no more suffering and Daddy will go there... they'll
see him again forever. Keep telling of, and showing your love as you already are. You are a very special person. It may not seem like it, but you ARE blessed. Try not to get antagonistic with your inlaws. You all have fears. Talk your feelings out and try to come to a place where you can all stick together. They may fear what will happen and want to secure visiting rights. There is no way you would lose custody, but they may just fear you might one day move away. There is TOO MUCH to think about at once. You have come to a good place for love, support and caring. This forum is a sad place, but a treasure of comradery. Bless you all.
 

sharona

Distinguished member
Joined
Dec 8, 2006
Messages
491
Country
US
State
il
City
joliet
My God I am exhausted just reading all that you are doing.P lease give yourself time to rest .May God Bless your family.
Sharon
 

pepsiman

Distinguished member
Joined
Feb 4, 2009
Messages
445
Reason
Lost a loved one
Country
US
State
NY
City
Latham
Elizabeth,

I've been down the road you're on. Four kids and uninvolved, uncaring family. No friends. I won't delve into it all here, but if you need someone to vent to (or even just ask questions you're not comfortable asking of the forum) send me a PM. You can ask Kelly, I'm very frank and open about all of it. I just wish I hadn't had to travel the whole path on my own. What you're going through sucks big time and I do understand.

Dick
 

Madison1943

Distinguished member
Joined
Oct 21, 2009
Messages
162
Reason
PALS
Diagnosis
05/2009
Country
US
State
Wisconsin
City
Madison
I echo all the other writers--your job is way too stressful. You need a trained caregiver for your husband and you need to concentrate on your children. Has anybody else mentioned hospice to you? If you can't afford a caregiver (mine only gets paid $15 an hour and she only works 2 hours a day) but hospice offers free of charge caregivers who will wash your hair, bathe you if you don't have a shower, etc., wash a load of clothes, change sheets, etc. They're full of good cheer in addition. I wish you better days....

Carol
 

Mark's wife

New member
Joined
Jun 3, 2010
Messages
4
Reason
CALS
Country
US
State
AZ
City
Mesa
Thank you everyone for all your kind words and support. We do get quite a bit of help here locally. The ladies in our church come and clean and bring meals twice a week and Mark has visitors every few days from his friends and fellow police officers. They are also always asking us what they can do to help us out. They have done the yards, cleaned out the garage, and his commander even gave him a tv for Christmas for our bedroom. We are overwhelmed at times by the generosity and love that has been shown to us throughout this trial.
But it is hard to ask for what I really need most- and that is someone who can help me take care of Mark. Our home health nurse recommended he go on hospice right now so we can get nurses and helpers coming in and he can have whatever medicines he needs delivered. Then if at some point he decides he wants a vent, he just goes off hospice. Which is lame, because it seems to me that we would need even more help at that point, but I can see why it is set up that way.
I think my children have a basic understanding of where we go when we die and that no matter what happens we will all be together again someday. But we have not had any official family discussions about ALS and the fact that Dad will eventually die from it. My oldest has come to his own understanding by asking questions, which I try to answer as gently yet honestly as possible, and we have had several good crys together. But the other kids I think are just too little to realize or think too much about the gradual decline in their dad's health the past two years. None of them have come to me with any questions or comments and I hope I am doing the right thing in letting them understand and work through it in their own time.
I guess my main fear is that if he decides to get a vent, I don't think we will be able to continue to function as a family. But I feel immense guilt with this feeling and I don't think I can tell him this- or if it's even appropriate. I want to support his decision. I just don't think a vent will improve his quality of life and I think it will be terrible for the kids to see him in that state and see him suffer even more. And I feel so bad for even feeling that way because it means I would rather him not be with us. So we will soon be at a crossroads and he will have to make clear that decision. I know he said in the beginning that he wanted it but we recently lost a friend who had ALS and opted not to have a vent. His suffering was minimal and his passing was what he wanted. So I know Mark is having second thoughts about it. He told his brother he thought he could do more for his family on the other side than he could in this life. What can I do?
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,168
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Elizabeth, I don't have any suggestions, but will pray for all of you--you and Mark and the children, that whatever is best is made clear.
Hugs,
Ann
 
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