New Here

[genavin]

Hey all. My husband (44) was diagnosed in September 2010 after about 9 months of hand/arm weakness. Since his diagnosis, his speech and respiration have been moderately impacted, and he's lost quite a bit of weight (but is stable). He hasn't experienced any noticeable weakness in his legs yet, and is still very mobile.

We have three kids, ages 7, 11, and 13, and I have been a stay-at-home mom since our oldest was born. Before my husband's diagnosis, I had decided to return to school to get my Master's in Teaching, so am pursuing that (hoping that by the time I finish, there will actually be teaching jobs available!).

We've shed a lot of tears, are now coming out of what I think was a significant depression, and are starting to tackle some of the questions and issues that we know are ahead. Reading the posts in this forum have been helpful to me. We live in a great community and have very supportive friends, but no family in the immediate area.

My concerns range from financial to the emotional health of our kids (who know their dad is sick, but we have not spelled out the "end" for them, on the advice from many that when they are ready to hear, they will ask - and we'll be honest with them) to having enough support to whether I can manage to continue to raise three kids, go back to work full time and provide caregiving to my husband.

I think one of the hardest things we are dealing with is that we each are struggling with our own issues. Of course, some of the things we're dealing with are the same, but my husband is dealing with the idea of being ill and, eventually, or his own mortality. I am dealing with caring for him, and having to eventually go own without him. We are both scared, but for different reasons.

Today we're ok, and while we're thinking about the future and trying to plan, we are also trying to leave each day in a meaningful way. Thanks for listening/reading - feels good to share some of this with people who have faced the same issues.

 

[Miss]

Welcome to the forum. I am so sorry that you had to find us. If you have any questions, ask. Someone here will either know the answer or help you find it. I would be lost without these dear people.

 

[brooksea]

Very sorry about your husband. I wish you both luck and hope you will be able do things with the children and each other for quite some time. Sounds like you know what you are dealing with and how to deal with it. We are here when you need us...

 

[joni51]

Genavin your husband sounds bulbar is he? My husband was diagnosed in October, and it has really effected his speech, and swallowing. I know how you feel, we all do.

 

[tdamess]

all you can do is hold on to each other and enjoy what time you have left and take each day as it comes .. try not to look to far ahead things never turn out the way we think they will anyways .. were here when you need us

 

[Miss]

Actually, Genavin, your husband's ALS sounds like limb onset - not bulbar. If you have seen some impact on his respiration, get him on the bipap machine as soon as possible. It could help hold off the decline.

 

[pk_diesel]

Genavin - Sorry to hear about your husband's diagnosis. My wife was diagnosed last April, and I have two kids who were 13 and 15 at the time. So I understand some of what you are worried about. I found it helpful to not look too far ahead on any given day for most things. That keeps life as normal as possible for everyone, and it helps to enjoy what we can while we still can.

The thing that I have always worried about are my kids. They will have a little more trouble dealing with the changes. I have made it a point to talk to several adults that I know interact with my kids on a regular basis (coaches, teachers, people at church), and have asked for their help keeping an eye on them to look for any changes in their normal behavior, grades etc. I find they need to have a responsible person other than Mom and Dad to vent on sometimes.

The ALS of Michigan has been a tremendous help for us, as well as the input and advice from the multi-disciplinary clinics. I cannot say enough about them. We have also had an outpouring of help from friends and family.

If you have any questions go ahead and ask.

We will keep you in our thoughts.

PK

 

[Chase_Corin]

The reality of death happening eventually is hard for any of us to grasp, and for kids it's a lot harder. At 33 I am still my dad's kid and thinking that somday soon he might not be there sends me into tears no matter what.

I would suggest perhaps getting a councillor involved. When I worked for the Cancer society we had some excelent people that helped parents talk to their kids about cancer.

I would do somthing soon because if your children hear you and your husband talking about ALS they might take it into their own hands and look it up online. Kids are resourceful these days. You don't want them reading about the stark reality of this disease without braceing them for it.

The Financial and physical limitations will work themselves out but your family's mental well being is very important and your kids may want to get involved and help you and your husband or want to spend more quality time together as a family.

 

[CoachMeg]

Genavin - Glad to see you on the forums, although of course hate the idea that anyone has to be here. My husband is 44 and was diagnosed this year. We have two kids, 10 and 6, so I can sympathize with your situation.

We haven't laid things out for them either, but they know Dad is sick and can't do the things he used to do. We are taking it one day at a time, which is all you can do with ALS.

If you haven't already, I would encourage you to contact your local ALS association. They have been wonderful for us. A great resource for everything.

You are surrounded by caring compassionate people here on the board. I look forward to seeing you around more.
Love and light
Meg

 

[genavin]

Thanks everyone for the welcome and replies.

We are currently going to a neurologist and multi-disciplinary clinic at UCLA, and have so far been very happy with the care we've received. That clinic is tied in with the MDA, which has an ALS division, and they've been providing some great resources (mostly reading material right now, although they have a loan program for medical equipment, etc.).

Got a little overwhelmed this morning when I opened that door in my brain and thought ahead to a time when things are worse. Some mornings it's a struggle just to get three kids fed and out the door to school, and I got a little freaked out about what that whole thing would look like when I'm also caring for my husband. Ever supportive, my husband told me this morning that this stuff was "right in my wheelhouse," and that we're going to be fine. I love him for believing in me and us. And because he makes me laugh every day, even in the face of this.

-Gena

 

[wife of PALS]

Hi Genavin,

I too am in a similar situation as you are. My husband was Dx 11/09 w/ Bulbar onset at the age of 50. We have 2 children ages 15 and 10. I waited just over a year to tell them the truth about their dad's disease. Ironically, my son was studying Lou Gehrig in class that week and my daughter was studying abnormal genes in Biology particularly ALS. It was a tough decision to make, however, I think you need to know your kids personalities to judge the best time to tell them. My kids have been having a VERY difficult time dealing with the situation. I am taking them to a wonderful therapist who will take us through the entire illness. It is really important, I found, to have your kids be able to share the info with a close friend.

We have gone through the emotions as you have, the anger, the worry about the future, the reality of the outcome. This is the first time I have logged onto this forum. It seems like it will be helpful for me to ask questions of those further along,as well as, reach out to those just beginning this journey.

I hope I've been able to help even a little bit.

Wishing you the best.

wife of PALS

 

[stephie]

Genavin,
My children were 7 and 13 when my husband was diagnosed with ALS. I thought you might take a small bit of comfort in hearing that the only positive thing that has come of their dad having ALS is that they have grown to be kind, mature, responsible and compassionate children. They are now 12 and 17 and I am so proud of the way they take care of their dad. I was so worried about what this disease would do to my children. They have certainly had difficult bumps along the way, but it has made them both more caring people. They are wise beyond their years!

 

[snugd35]

Welcome to the forum. I want to offer a bit advice for your kids. Im in my mid 20s and I had trouble letting things out when I was younger. I found talking about things helped a lot. Maybe see if the kids would want to talk to a councilor, teacher, or coach if they already aren't. Also maybe encourage the little things...My grandma was diagnosed with ALS early this year. She has been unable to write for two years. Normally living just minutes away, during the winter months her and my grandfather would travel to Florida as many elder people do. I found old cards and letters that her and I would write to each other...to see her handwriting was amazing. It brought tears to my eyes. I also looked at old pictures as well. Maybe take pictures, have your husband write them letters if able, or record a video for each of them. My grandmother made a few photo albums/scrapbooks for me as well as blankets. That stuff I will keep forever.

Like you said everyone is dealing with their own thing. Every deals differently. I pray God gives you and your family strength, patience and guidance.

 

[heymom05]

Hi Gena,

Your husband's onset sounds like my husband's. Kevin is farther along, with no significant speech or breathing problems. Our 5 children are all grown, our oldest is single and lives withis and is a great help. We have quite a great support system with our family and life group and ALS Association.

Withkids, honesty is always the best policy. You never have to apologize for telling the truth and they are seeing his decline with their own eyes. So tell them. Our grandbaby said "Poppi walks funny." and i agreed with her. She knows something is wrong and for her age we just said "Poppi's legs dont work right anymore." you know how much to tell them and trust your judgement.

We are all in this together, so keep us updated on how things are going. get home health care if you can, as quickly as possible and let them help you. Take breaks for yourself!