Being shut out

[erikita]

My heart is breaking...my love is shutting me out of his life. He wants this to all be over and doesnt want me to watch him die. He is such a proud and stubborn man. He was so full of life and love for me and now nothing. This disease isnt just only taking his life it is taking mine. I dont know how I am going to survive this.

 

[AfraidButNotAlone]

I understand his feelings. They may not be fair, but I understand them. I don't want my family to have to care for me and watch me die. He still loves you. Believe me he does.

 

[erikita]

Rob: thank you for that. Your insight is invaluable since you are in his shoes. I dont know how he can want to be alone when awhile back all he said he wished for was me by his side and for my face to be the last thing he saw before he left this earth. I dont care that he is no longer the strong muscular vibrant man he was. That is what I still see. I want to be there to the very end at what ever cost but he says the cost is too great and wont let me do that. I WANT A SAY IN THIS! How cruel this all is to him, to me, to us....we should be growing old together and having children and watching them grow up.

 

[affected]

I don't have any answers, but I can say something about how it is for me and how I try to cope (and I don't know that I'm doing things 'right', gosh I don't know what 'right' even is).

My PALS and I only met 4 years ago, and so there are some difficulties in how we try to cope with this as a couple, compared to people who have been married for 30 years and more.

Both you and your partner are in the process of trying to come to terms with this diagnosis and it is not an easy thing to do, but we all kind of do it in some way. We both go up and down with what we think as we go through things we feel. Try to hold your personal feelings down for a little while each day and think only - what is he going through and how can I let him do that and also let him know I'm there.

It's not easy to do, I battle all the time with similar things, and yeah at times it is all overwhelming. How far do I push him, and how much do I just give him time to work through any part of what is happening? Ya kinda just do it somehow and sometimes you get it wrong.

Sometimes too, it can be a way for a PALS to plea for sincere help - like a bit of a test, to see if you really do want to commit to staying all the way through, not just part of the way til it gets too tough.

For me a huge one was the first visit I had with a counsellor. He asked if I feel trapped and I said yes in a way, but I know there are always choices. He said we could talk about them in another session if I wanted to do that.

That was all he needed to say because later, I thought more and more on this and realised that I know that people have been unable to cope for whatever reason and leave partners when a disease such as this hits. I realised then that I was not trapped, but that I was choosing to stay and see this through as a conscious, definite choice.

Maybe give him some space, then write what you want to get across to him, and be ready for the right time to talk to him about it when he is open to it.

We are all affected by this disease. Let yourself rant a bit here.

 

[zoohouse]

When my brother developed cancer he did the same thing, even with his daughter. Finally I sat down with him and explained that being distant would not extinguish the love, thus decrease the pain of his loss. But that it actually added to my hurt, as not only was I going to lose a person that I loved, but now I was dealing with rejection. Explain that he can still be that shoulder to cry on, that person you can go to for emotional support. I asked him to consider if it were me that was dying, would he want me to cut him out of my life? He may also be suffering from depression, which does make a person want to isolate themselves. My brother did a 360 and started being more affectionate than he had ever been in his life, and always let us know how much he appreciated us and loved us. It turned a terribly painful situation into a gift of a sort. Now my sisters and I look back and remember fondly the last months, weeks and days that we bathed in his love. Please share this story with your husband, and I will pray that it ignites in his heart.
Paulette

 

[Bad Balance]

He still loves you, but he is withdrawing. See if you can get him to see a counceler ?

This sounds grim, but purge the house of anything he might use to do harm to himself.

 

[Outdoor_Man_Nc]

I don't have much to add, but in the beginning I thought it would be best for my wife not to have to go through this out of love for her. Now we have grown much closer due to fighting the monster.

 

[MaxEidswick]

I don't have much to add, but in the beginning I thought it would be best for my wife not to have to go through this out of love for her. Now we have grown much closer due to fighting the monster.

I have been doing just the same for the past 4 days and I am very ashamed of myself, my selfishness, and the self-pitying BS.

Thank you for posting, Erikita. I will take you message to me home today.

Max

 

[milanumpa]

I have posted many times the agony I go thru very day. We've been together for 30 years. He has always been my white night. Then he went thru cancer just as we were starting to be normal again, he started with the als. Criticizing, lashing out , yelling ect. I believed he was just not ready to die. Then I started reading numerous posts of cals dealing with the same thing. Somehow anger and withdrawing and all the neg stuff. appears frequently on the board. I have talked with him many times to no avail. Yet I know day will come I will miss even the yelling. I try to keep my head in a good spot so I can love him and express that just as he is. I will accept his refusal of a ventilator if that's what he wants. I would keep him even if he can't move anything. For him this is a dehumanizing , painful disease. I love him, always will. The other night when he thought I was asleep, he was saying how much he loves me and how beautiful I was. This is the hardest thing we will probly do. He is what he is, just try to love him however he is. And love yourself for the loving human being you are for caring for him. Do whatever it takes for you to get the energy to do it. I'm so sorry that any of us have to go thru this especially our PAL. Hang in there girl...........love ya. Mila

 

[erikita]

Thank you all for your responses. Saying this has been incredibly hard isnt news to any of you. I cannot believe how many tears I have shed and how many more there will be to come. I am just going to try my best to put on a strong face and not be down when we are together. I just want to be the happiness in his life not the sad crying person I have become. He tells me not to cry so I will take my tears away and shed them in private. Its all I can do I guess. I dont blame him, who wants to be around someone crying all the time.

 

[Janie H]

Stay with him, he still loves you, I'm glad that I don't have a husband but the last time I cried was when I told my grown kids, he will come around, God Bless

 

[SMP51]

this was such a difficult thread to read with my eyes all sweaty. I never cry, hardly ever. it does me no good and my tears surely don't help him any. Suppose there will be a flood when he leaves me, best get started on my Ark

eritika, don't waste time and energy on tears, there is to much to do! we are only promised today and ALS only drives that point home to front and center! I have made my house beautiful, we don't go much so where we are has to be enjoyable, specially the areas he lives in. his windows look out over gardens and flowers...and a bee hive! breakfast has honey from our bees he watched me harvest and tend to, and get chased and stung by! rofl! and there are two big aquariums he can watch, yup they are work, but work I get to tend to in his company, and he watched as I designed and scaped and planted and changed and added fish ... and more fish, and surprised him with things. why? why not? got to keep living and as of today we are still here. I would be bored if I couldn't get out and about and they are beautiful visuals. Every thing is an event! Meals are big deals, weekly shows are big deals! ugh we have to wait till feb to see were everyone from the walking dead ended up! but Hell on wheel and Vikings start soon haha! We have 2 dogs and a cat, and lots of hair, but I clean floors daily, they are worth it, the papillion spends the day in his lap, the big dog runs with me and the cat LOVES him. Family is in and out as are friends, the door is open because company is a big deal too. oh, almost forgot the birds! the cat caught a zebra finch, someone's lost pet. He resurched and decided it need a friend...ended up with eggs , babies, and craigs list! lol! I almost got rid of the parent pair as well but come home from work one day an he tells me, " I had to throw things at the cat several times to keep him off the bird cage today, but then the cat decided to just sit and rest his chin on the arm of the sofa real close and stare...you shoulda seen it, it was so cute!" So yup, we'll be keeping the dam birds too, why not it's just a bird
Life needs living, make the most of it all, every small silly thing. there will be plenty of time for tears later..... (or in the shower every now and again)

 

[Mediasmart]

I'm somewhat guilty of the same thing with my family and I hate myself for it but sometimes can't seem to get by it. Not to sound crazy here but I've had any number of pet cats in my life and almost to a one, when they sense the end is on the horizon, they shrink away. I suspect that humans do too - at least I do. Otherwise it is hard to explain or justify but it has to be some inner drive that does it. It certainly isn't "meant" and if he feels like I feel when I push my wife out at times, well, it is a feeling more wretched than the disease.

 

[SMP51]

I'm somewhat guilty of the same thing with my family and I hate myself for it but sometimes can't seem to get by it. ............. It certainly isn't "meant" and if he feels like I feel when I push my wife out at times, well, it is a feeling more wretched than the disease.

don't be so hard on yourself, Your post helps me remember he is not growling at me.
everyone has a place they "need to go to", down time, alone time..... whatever one wants to call it. we all got things need to deal with, this disease seems would give a PAL even more cause to need a place of solitude to lick wounds!
I try to remember that my part in this battle with the monster of ALS in only a support role, the real battle is his. When I am told it is a bad day or he is not feeling to good I try to listen and give him his space. I would think having to deal with ALS one would need the space and freedom to brood, sulk, or be angry at God...whatever it takes to deal with those feelings.

 

[mrvaughan]

Hello Erikita,
I feel for you. I also have been pushed away at times, by my husband. He wanted to leave us all and go away and really didn't care that I cried and wanted him to stay. He did stay, and is still here 13.5 years later. Unfortunately, now his mind is going. He has some type of dementia along with ALS. He is nasty and combative a lot of the time, but I keep telling myself that he can not help it. My advice is to not take what he is saying personally, and don't think you are not doing enough. Just by being there and caring enough to ask about it in this forum, is proof enough. Definitely don't think less of yourself if you feel down and out, or if you get mad. You are only human, and this is an awful disease. Yes, he is going through a lot, but so are you. Don't feel terrible if you get angry or need "me" time. I have spent years trying to be better and do better and give in all the time, it has taken it's toll. I wish I had the strength that you do to even post and ask about it and not just sit in silence. God bless you.