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Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
Hi everyone,

this is the first time I have ever participated in a forum. I have been reading some of the posts here and have had a good cry already. we all sound so patheticly in the same terrible boat and I can relate to so much of what is being said and am so scared because I know what is coming. my husband became sick 12/06--he was diagnosed as possible ALS in 2/07 and tested positive for lyme in 3/07. we of course jumped right on the lyme thing because really, what is the alternative? sadly, he is still going down hill even though he is still being treated for lyme and the ALS is becoming more and more a realistic diagnosed. I am a wreck just like all of you--but here is my problem(I don't know if any of you have faced this or not). . .my husband has not accepted the ALS diagnosed and we have not told anyone that he may have ALS. All we have said is he has lyme, the kids think he will get better, the neighbors and family and friends wonder when is he going to imporve. I am sick to my stomach becasue I cant tell anyone, and I have to field all the questions for people who think he is improving. He wont go to a neuro or als clinic, he wont visit family or friends, he doesnt work anymore or go out anywhere if he might see someone he knows. we own our business so I have taken over his job in addition to taking care of him and the kids. he can barely walk, barely use his hands, and his speach is very difficult to understand.


I dont really want to accept ALS or tell anyone, but people need to understand what we are going through, especially his family. I really think however we need to tell our kids first and that is a huge and horrible task. Of course they know dad is sick, and they see him going downhill so we are not fooling any one. the kids are 18, 16, 13 and 11. On one hand they need to know the truth so they can come to terms with the future and spend time with dad and understand why mom is having a nervous breakdown. On the other hand, they still have the fantasy that dad will get better so they have hope and they still have happiness even if it is short lived. When we tell them they will be devastated. I worry about telling them during the school year becuase their school work may suffer, and I worry about waiting for a school break because then they have too much time to think, and I worry that if I wait for summer dad may be so far gone . . . basicly I just worry.

I really need advice on telling them. should I find a psychologist or therapist first and talk with them or have the kids visit with them, should I talk with the school guidance counselor, should my husband and I just sit them down and say kids, dad is dying and it is going to be horrible and there is no hope?


please help me with advise.
 

BEATALS2023

New member
Joined
Dec 27, 2007
Messages
3
Reason
PALS
Diagnosis
07/2005
Country
US
State
florida
First of all I am not a wreck,barbie,second of all,you need to stop thinking about yourself as a wreck. I am not "patheticly in the same boat",my boat is sinking,all right,but my spirit is so much lighter than water,and like oil will float gracely above all the circumtansces,no matter how hard they might be.

You need to start putting yourself together,you need to keep your chin up,it is called dignity,good people live with dignity and die with dignity as well. You need to teach that to all your kids,we all are going to die someday,one way or another. At least you have the chance to plan ahead. Love your husband with all your heart,you and your kids have been given the oportunity to enjoy the person you love.Support your husband and grow greater through the whole process,be proud of him and make him feel proud of you.Crying will not do any good to him,he needs a supporter now a crying person.

If you think I am been to harsh,let me tell you that I was diagnosed with bulbar ALS (the worst of all) in 2005 I can't talk,I can't swallow,I can't eat,I can't breath (I am on a BiPAP) a BiPAP is a "non Invasive" machine that helps breating by pumping air into the lungs."Non Invasive" means that there is no surgery involved and there is no tubes going into the body.Do I cry? I ran out tears the very first day some cruel nurse and doctor explained to me what having ALS meant. You and your husband do not have to feel ashamed to tell your friends about what is going on,if they leave,that means they were not your friends after all.You will be happy to get rid of people like that anyways.

May the Lord give wisdom,confort and the neccessary strength to face positively what you hve coming.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
Hello BARBIE,welcome to the forum although i am so sorry you have to be here under these circumstances.Although i have children they are grown now and none live at home.I am so sorry that you are having such a diffucult time right now.My husband was diagnosed with als 4 years ago.It has been a very difficult journey and a crazy roller coaster of emotions.I msyself have cried many tears through the last 4 yrs.I think at first it is just such a damn shock it is like being hit with a ton of bricks.I cannot imagine how much more difficult it must be to have younger children and the decisions that you will have to make regarding telling them the truth!That is if you feel that you really know the truth as of yet since you do mention the possibility of lyme disease as well. Denial is part of the grief process and maybe that is just the stage that he is at right now.Hopefully with time he will move out of Denial and will be able to face what is happening and help you to prepare the for the future in regards to telling your children and familly....Thier are a couple of threads on here for caregivers with children maybe in the mean time you could check them out and they may be of more help to you!......prayers your way......Gina
 

trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
Hi Barbie. I am so sorry for what you are going through. This can all seem so overwhelming. My husband was DX 8/07. A few weeks later, after the shock had worn off a bit, we sat our 14 year old daughter down and explained what was going on with her dad. Kids are very perceptive. I'm sure yours have picked up on alot. Bear in mind that their imaginations and fears can be worse than the truth (not that the truth in the case of als isn't bad) This was about a week before the new school year was to start. I did meet with her guidance counselor and the school nurse prior to school starting. We will also be starting family counseling in another month or so. She is not thrilled with the idea, but I think it will be of benefit to the family as a whole. For awhile my daughter not only wouln't talk about it, she didn't even want it discussed in her presence. She has come to accept the DX, and as a result chooses to spend more quality time with her dad than she otherwise would have. Although I see the pain in her eyes when she watches him struggle with things, she is also quick to offer him help.

I know this is a personal decision, and how you explain to each of your children may be different, but I hope that my experience with my daughter will be of some help. This forum is a great place. I have gotten a whole lot of help and understanding in the short time I have been here. You and your family are in my prayers.

Linda
 

CindyM

Extremely helpful member
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
Hello barbie- welcome to the forum. I see you've made some great friends already. We have a few families with younger children on this site and I am sure you'll get more opinions as they check in. It is a lot to deal with but you are not alone. regards, Cindy
 

Rachel

Active member
Joined
Oct 14, 2007
Messages
32
Reason
Lost a loved one
Country
UK
State
Essex
Hi Barbie. So sorry you have to be here at all but you will find a lot of support on this forum so you have come to the right place.

My mum was diagnosed in Jan 07 with bulbar palsy and sadly died on 12th November. I have an 11 year old son and so had to make the difficult decision as to how much to tell him and when.

He knew early on that his granny was poorly and wasn't getting any better and I remember last December, before diagnosed (although my mum was sure she had ALS by then) when she had a bad choking episode which he witnessed. It was after this that I told him that granny was very ill and not likely to get better, but we didn't know exactly what was wrong with her. As soon as she was diagnosed I told him everything. What ALS was, what type she had, what problems she was going to have and that it may be that she wouldn't live for many more years (or months as it turned out). He is quite a sensible boy and to hide it from him would have been unfair & he would have soon realised that things were very wrong with granny as the months passed.

As a result I was able to share my feelings with him and he with me. When she was in hospital I took him with me to visit and towards the end in the Hospice he took every opportunity to see her. When she died my husband gently told him and whilst he was very sad he was able to see that she wasn't suffering any longer and was now in a better place.

Children are more resilient than you think and if told the truth then (depending on the child, of course) are able to cope pretty well.

On the other side, my brother also has a young son (10 years) and took the opposite decision to shield him from my mum's illness. My nephew knew granny was ill but thought she would get better. He didn't see my mum for several months and when he did visit her in the Hospice it was quite a shock to him to see how she had deteriorated. He became very introverted and his school work suffered. He was very upset when she died as he hadn't had much time to adjust to the fact that she was dying.

Of course, you know your children and each one will react differently, but I hope my story helps you.

Take great care of yourself.
 

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
Seek help if needed

Barbie,

Sorry you are having to be involved in so many decisions concerning this disease of ALS. Stay strong and do seek help. The guidance counselor at school is a smart move, first and just be honest with your children. Children want the truth even at an early age, as they are very observent and they will adjust with love and honesty.

As a CALS, we know what you are going through and my husband was in denial, also, with this horrible disease, so hang tight and stay strong, God will see you through this.

My prayers are with you.

CALS.
Hugs,
Caroliney
 

Shatzie

Active member
Joined
Nov 12, 2007
Messages
86
Reason
PALS
Diagnosis
02/2008
Country
US
State
OK
I am undiagnosed, but my neurologist suspects I have a neuromuscular disease. I have had bulbar symptoms and foot drop since July and physician observed muscle weakness. I am scheduled for an EMG on 1/14.

I am an elementary teacher, have been divorced for less than a year, and have three children: a daughter who is 15 and two sons who are 9 and 6. I do not want to worry my children, but I am a big believer in giving them the information they can understand without freaking them out.

My daughter is a freshman in high school and she was the first person besides me who could tell that I was slurring my speech. We have had several honest discussions about what this might be and what might happen. She has even said several things to me lately like "If this is a neuromuscular disease and you get to the point that you can't talk or walk..." and we talk about what she is feeling. She usually says things she wants to do if we find out that my time is limited. Although she has a very different personality than I do and we often butt heads, she has been very supportive when this emotionally catches up with me.

I have told my boys very little. I have told them about the slurred speech and they know that I fell back in November. We've laughed together when I have had difficulty saying something in front of them and I've told them that I have been going to the doctor to find out what is causing this. With them I figure it is a "need to know" basis, until they need to know, I won't tell them.

I think that ultimately you know your children best of all. I pray that somewhere between telling them nothing and telling them everything you will be able to help them though this and you will find that they will be helping you through it too.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
Hey Barbie!Where did you go?Ive been checking in to see if you have been around lately.I know that caretakers have so very little time especially the ones with children to answer posts.I dont want to ruffle any feathers on here but i think maybe one of the posts may have scared you off!If that is the case please thier are others on here waiting and hoping to hear from you and praying that you are o.k.....If you are just too busy i understand that too......just thinking and wondering what is going on!.....prayers your way.....Gina
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
Hi Gina,

Yes, as you know we are busy and exhausted! I thank everyone for their posts--I dont know if anyone answered my question but it made me think. The thing is for those of us without ALS---we dont face down death like our loved ones, but we have to deal with the aftermath and go on living and grieving. And some of us are already grieving everyday. Sorry to some that I can not be as "strong" as them, but each of us deals in our own way and I wouldnt have written if I didnt feel desperate (PMS'ing to!).

My husband will not talk with the kids, I tried again and he is adamant. he wants them to have hope, and feels that the reality of ALS IS WORSE then what they may imagine. Some of the adults in the family have point blank asked about ALS, and I just have told them that we dont know anything for sure and cant really discuss. Thanks agian and I'll be around.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
Oh hi Barbie , I am so relieved that you are back......dont let people fool you strength comes in different forms......and i am sure that you are as strong as any one of us on this forum.! No i dont know either what it must be like to stare death in the face b/c it is my husband who has als and not me.BUT i do know what it is like to grieve everyday for my husbands losses and to feel so helpless that i am not able to do anything to stop his suffering and decline.I know what it is like to lie in bed beside him and wonder if he will awake in the morning or not.I know also what it is like to have to do everthing myself and still try to take care of him and his needs. Thier are days that i thank God for denial...it sometimes gets me through the day...but it is very short lived and everytime some new problem arises reality hits again and i feel somedays as if i am going to loose my mind.I havent so far i dont think..lol..This forum is such a help and i come here when i have nowhere to go that i feel people will really understand what i am going through!So please dont ever apologize for not being as strong as some cause i dont buy it!....prayers your way and welcome back.......Gina
 

swmn

Distinguished member
Joined
Apr 7, 2007
Messages
146
Reason
CALS
Country
US
State
Wi
grief

while all these people CALS / PALS /KIDS, are trying to stay strong - they are also to going through the anticipatory grief - so barbie, I think that your hubbyis just not prepared to go to that next piece of the grieving process - give him time - but consider starting to give your kids a better understanding of what is going on - I have an 8 year old who has slowly realized over the last 8 months that his "uncle john" is going to die - he is a bright boy, and I could not hide it from him - He walked 5 K with our PALS for the ALS walk and "worked" all summer helping him with yard work - now he stops in and sings - accapella, to our PALS to brighten is day. My daughter is only 5 - she knows our PALSis sick, that his legs dont work, and she too did the 5 K walk. she recently learned the fragility of our PALS and she trys to see him every day to give him a long hug...niether of my kids would have ever embraced the opportunity to show this kind of love and support w/o knowing that thier favorite uncle was struggling.
You can use your own judgement - he does not have to be the one to tell them - and they will be sure to embrace every day with him. ALS affects more than just the PALS, so you use your best judgement your kids are pretty old - and they will either grieve after he is gone and carry regrets - or they can grieve and cope now and at least know they had special memories with their dad.... Thats what I would most want as a child - my dad died suddenly- if I would have known, I would have done some things / said some things - and been there more... the kids are feeling it - dont think for one minute they dont realise that something is going on.............
god bless- prayers and hugs
 

swmn

Distinguished member
Joined
Apr 7, 2007
Messages
146
Reason
CALS
Country
US
State
Wi
I'm Back!

Hey Barbie - I cant let this go - I don't know if you know my situation, but my friend / boss has ALS and I am on this forum because it helps me deal with this nasty disease -

I - being a "pseudo-CALS ", trying to help as much as I can, feeling pain and going through the grieving process, and I would feel so incredibly hurt if I hadn't been told that my friend had this disease. I do a lot of different things to make their daily lives easier - and I'll do more as they need more help. There are lots of people who want to help - who need to help, because they love you, your PALS and your kids. Family deserves to know. I hope your husband soon realizes that there are a lot of people who will step up because we are human with souls and we all can help eachother. He has an opportunity to raise awareness of this disease - keeping everyone in the dark will not help us find a cure / treatment.... God bless you on this journey - and I hope you will let others help as God helps through others...

So my final Loving, caring thought to you Barbie is.........
HOW DO YOU NOT TELL THE KIDS?
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
Wow swmn you are so totally right on with this one.Your devotion and passion absolutely amaze me !Barbie you gotta love this lady because she has so much to offer !She has a heart that is bigger than you can ever imagine and she has helped me so much !Her and i have become almost like a team and we certainly are looking for new members so please join us!Thier is room for all of us on this team and we will make it together.....through the tough times and the heartache thier is strength in numbers!........Gina
 

dukesnider

Member
Joined
Nov 17, 2007
Messages
14
Diagnosis
07/2007
Country
US
State
new york
How to tell the kids

Barbie, My wife was diagnosed last year. I too have young kids. They are a little younger than yours, 9,11 and 13. This is what I am doing to tell them. 1st I contacted the school psychologist and let her know my kids will be facing the truth about their mother and her ALS. I told the school psychologist that after I tell them, I will call her so she and their teachers can keep a watchful eye on them. 2nd thing I did was to get them all cell phones. I am going to use the cell phones as a constant link to me and I will tell them they can use it anytime they feel the need. I hope that when they get depressed or are upset they will call me and then i can respond with the appropriate action. I feel that as long as the kids have an open line of communication to me at all times, there will be no hurdle we can't get over together. I will be telling my kids the "truth" this weekend. I hadn't told them yet because I wanted them to enjoy one more holiday season without any grief. This will be the hardest thing I will probably ever have to do but I know that I can't keep ignoring the fact that my wife is going to die in the near future. On a side note, I am the only caretaker for my wife. I am facing an uphill battle mentally, physically and especially financially but what I have learned is if you face everyday one at a time and deal with what is in front of you for that day, It helps. I know it is hard not to think about tomorrow, and the day after, but we are only human. I wish you the best and if you can try to take a minute or two or three for yourself whenever possible. We are all here for each other. Use and abuse us. Dukesnider
 
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