sad news that has me very scared and depressed

[Patsy]

Hi everybody;

My husband Stephane has decided that he is totally burned out and that he no longer loves me. So when and if I can find the necessary staff for 24 hour nursing care, until such time Stephane will stay and assist in my care; otherwise I will have to be admitted to a LTC facility. Anyway we are starting to do the ground work tomorrow. The boys are heartbroken and want me to stay home, so we will work very hard to meet that goal. They will stay with me as much as they want, the same thing with Stephane once we know where we are going. I think that it is for the best for everyone, as being cared for with resentment and anger doesn't foster anything positive. For Stephane couple counselling was not an option for the last 5 years. So I have had to resign to the fact that we have irreversible damage that only 2 can fix and not me alone, because I have tried but it is not doable alone. I have to think of my health now and focus on my children, rather than wasting my energies on fixing stuff that I am powerless over. A.L.S. makes me powerless in many aspects of my life and I can't allow someone to make me powerless in my own marriage/pursuit of happiness.

I am still reeling from the sudden change and very sad and upset but as my mother says "It could the best for everyone. ", you never know. All that I know is that I deserve to be loved in a way that builds me up and not down, so does Stephane!

Regards;

Patsy

Patricia Seguin-Tremblay,
Ontario, Canada
P.A.L.S. since 1998
P.A.L.S. (Person with Amyotrophic Lateral Sclerosis)
Tough times never last, tough people do. -Robert Schuller

 

[upila]

Dear Patsy,
I read and re-read your post and many thoughts came through my mind - yet, I find myself lost for words. Without anything further, I send you my warmest thoughts tonight.
Upila

 

[A Daughters Love]

Dear Patsy,
I to am at a loss for words. All I can say is hold on tight to the love of your two boys and draw your strength from the love the three of you share.
My prayers are with you.

 

[Al]

Hi Patsy. I am very sad reading your recent post. You have been a great help and inspiration to others on this forum and others that you have participated in. Nobody deserves this and least of all someone in your position. We sometimes can't change peoples feelings and must accept things as they are. You have shown yourself to be a fighter and haven't given up. This is just another test put before you. You will come out of this ok. I am sure. Hopefully your family and friends will rally around you and help out. We are here in spirit for you. Know that you are loved by everyone on this forum for who you are. A friend with ALS.

 

[dana]

Patsy,
I can't even imagine the betrayal and heartache you are probably feeling. It is tough going through this disease, and now to worry about your marriage... Just know that your children will love you no matter what. I don't know your situation, but I do know that if that was happening with my mom and dad, I would be there to support my dad (who has the ALS/Lymes) in any way possible. You will not be left alone in this, I am sure. As for your husband, I am sorry, but it doesn't sound like great timing on his part. I am a firm believer in "sickness and in health" but some people choose to take the easy way out when faced with trials and tribulations. You have been more than helpful with sending me information any time I ask, and the way you fight is an inspiration. You are a well educated woman, and you will be o.k. Lean on your sons and don't be afraid to ask for help. That is what your kids are there for. I know that if my dad needs anything, I will do my best to help him in any way possible. I am so sorry you have to go through this on top of everything, but hold your head high. You are a strong woman, and you can win this battle. I will be praying for you.
Dana

 

[Granny]

Dear Patsy,
Like everyone else, I find it hard to know what to say. But, I will say that I am thinking of you and praying for you. Your wise help on this forum is something that we all have been helped by.
Please keep posting, hang on tight to the love of your boys and your family.
Love, Leah

 

[TBear]

Hi Patsy:

I am saddenned and disappointed by this development. Although you and I have discussed this situation privately, I believe that all should know that what your husband is doing, while relieving himself in the short term will, no doubt, haunt him in the long run. I suspect that the halo of sainthood is fading even now.
Good luck in your new digs. I hope that, in your next stage of care, you will be safe and treated with respect and dignity... and have the time and opportunity to dispense your regular and valuable advice on this forum!

CHeers

T.

 

[Theresa2004]

Patsy, I don't know the circumstances T-Bear refered to, but I am sorry. This decision for what ever reasons will come back to bite him.
Honestly, when I read your post, I was really pissed off. He has two boys on top of it. I don't pretend to think this is easy for any caregiver at all, I admire each and every one of them, but there has to be an alternative.

 

[Carol Deboer]

Hi Patsy,

I know that I have been on the forum much latley, however, like everyone else here, I was shocked to here about your situation. I honestly do not know what to say But, I will say this. He will one day regret his position about leaving you. I know caregivers all burn out, I did, but picked myself up and kept on going He obviously does not have the strength or will to do so. That is too bad. I feel for you now. I hope that you will be alright, as if you do not have enough on your plate! But, for reasons unknown or known these things do happen, and as everyone else said, keep your head up and pray for strength during the next few difficult months. I will keep you in my prayers my dear friend, and I know that your will be alright.

STAY STRONG !

Love, Carol

 

[trisha p]

Patsy,
There is nothing really that I can say that others have not already said above. I too am shocked and believe he will regret this. I know my sister-in-law is burned out but she is sticking by my brother through it all. Know we are here for you as you've been here for us and we love you. You will get through this - hold on to your sons and the love of those around you. I'll keep you in my prayers for extra strength and comfort as you adjust to this change.

Take care,
Trish

 

[rcharlton]

Hi Patsy,

You have been on my mind a lot since I read your post. I can't even imagine your sense of loss and, I'm sure to some degree, betrayal.

I think the only response one can give in a situation like this is a hug. So just imagine you are getting a big group hug from everyone here.

As a PALS, I'm sure you have learned to adapt to whatever garbage life throws your way - and end up a stronger person at the end of the day...and from your post, it sounds like you have the strength and right mental attitude to get through this crisis - as all of the other past crisises ALS seems to invite - as tough as the next little while may be.

Just remember that you are never alone, the world will keep turning, the sun will always shine and the songbirds will be back in the spring (I hope that didn't sound corny - but I always get comforted thinking about those types of things when I am really depressed).

Take care.

Richard

 

[terri]

Hi Pasty,

I too am sorry this has happened. I wish I was next door to you so I could help. I'll be thinking about you.

 

[wewillbeatthis]

Patsy,

I am so sorry that on top of the ALS you have to now deal with your marriage ending. I would have to agree with many that have said this does not show a strong man.. In fact one day he will turn around and say what did I do. It is sad but it takes situations like this to happen in someones life to learn who is true and who is not. You have been winning a fight with ALS for 7 years and I have no doubt that you will continue to win this fight for many more. Allow yourself the time to morn, the moments of tears, dissapointment, and whatever else you have to let out. Just don't remember that at the end of each and every day to look in the mirror and say I am a fighter and I will overcome this as well... There is no doubt in my mind and from the things I have read and the good and bad days I have seen with my dad this disease is all about mind over matter..... Please Patsy don't let this situation get the best of you.... You will overcome this and they will find a cure.... You will be on top of the world and all of a sudden someone will be knocking on your door and this is when you continue to keep that dignity and fight you have... Keep your head hi and WALK on BY!

Take care and GOD BLESS....

Jen

 

[leslhart]

Patsy,
As we live with this disease, I think most of us find a calm strength that we never new existed, at least I did. Some friends disappear, some stay or new ones step up to the plate. Some family is there, some not as much. What I have come to learn is that I don't waste my time worrying about the people who can't deal with me or what this disease has done to me. Whats important is the people who are here, know that I am still me, and except that. Find that calm strength and try not to worry about things you have no control over. We're all here, we're all in the same boat, this is what this forum is for.
Les

 

[cbrink]

Like everybody else I have read your post several times, the responses as well. I have been on this site several times over the past 2 years, that is when my husband was diagnosed with ALS. In the past I have always been an observer, your post and the responses compelled me to "participate".

I know how wonderful it is to get all the support and good wishes you are getting from all the PALS, that is great! But you need care, 24-7 of it, has anybody helped with that? rather than point the finger at your husband? It is always so easy to play the blame game, easier when you do not have all the facts... nobody can ever share that, only you and your husband know all the details and I am sure your versions vary.

I am sure your husband has and will go through so much guilt, maybe he felt he could no longer give you the care you needed, without the resentment. It is not easy for anybody! I can speak for the caregiver it gets very overwhelming! especially if there is no other support...

Honestly the idea has crossed my mind, how wonderful it would be to have peace of mind, for my children especially, things get very hectic, my children are 2 and 9. My husband was diagnosed 2 years ago, I believe that he gave up on that day, he stopped participating as a father and husband and has not left the house except to see a doctor and that is not even easy to do.

He was not willing to accept outside help, just recently he accepted shower help... which I told him I just could not do anymore (he is a big guy 6'-4").... my version... he is being very sellfish, he is very unhappy, he takes out his frustrations on me and the kids, he has become very demanding, at times very childlike, he has withdrawn from everybody....

His version... I am sure I am not the loving doting wife I used to be, I do not get dressed up and made up anymore, I do not spend as much time with him, just sitting and talking, I am not as patient as I used to be, ..... I am sure there is more.....haha


Count the things you are lucky to have, you must be a wonderful person, it seems you have touched the lives of many on this site alone! You have your mom, your children... you have your life, although it may be different than what you expected.

One thing for all you PALS to remember, a thought that has crossed my mind several times when reading your posts

By just being on this site you are a PALS with a different frame of mind, you are participating in LIFE... have any of you wondered how many PALS are alive but do not participate in life? how many just turn off?
How many of you thank your caregivers on a regular basis?

and tell your family how much you love them?

How many of you realize that your spouse/caregiver carries all your burdens and that of your children, friends and family? Only to get demands and critisism from all?

How many of you go the extra mile to do something that you used to do, that you can still do although it is hard...? (something that you do when others are watching)

How many of you make sure that your loved ones will live on without the guilt?



Yes what you are going through is difficult! Your loved ones go through it as well, they see all that you go through, they feel for you, they pick up all the peices.. they try over and over to make things barable for you and for the rest of the family...

remember when you point a fingure there are at least 3 pointing back at you!

so, I end this in a challenge... whenever you have a chance:

Kiss your loved ones, hug them, cherish them, show them your appreciation and most of all be happy that you can do that!