Losing my wife and my mind!?

Question

My 48 year old wife has ALS, also known as Lou Gerhigs Disease, for over seven years. Things are getting real tough now. She still talks but all her other movements are pretty much gone. Latley she has become more and more demanding and downright mean! I fully understand what she's going through and all the meds are not helping. She also keeps demanding to be put into nursing home. I married her for better and for worse. I cannot let her into a place like that. She doesn't understand that we take care of her much better than a home could, During the day we have hospice come in. Then our 19 year old takes over until I get home. Everyday now she cries and says she can't go on. She constantly asks me to give her all her oxy-cordone at once to end it. If it weren't for my daughters, I would help her leave. But it I did that, my kids would lose both parents. Me to jail and mom to god. We both now know that Kervorkian was really a caring man.
Sorry for the ramble, I just needed to vent...

Answer 1

We just lost my father-in-law to terminal cancer, however he was much older than your wife is.

Pray for God's presence and spirit to be in your home with you throughout what you are going through and for what's to come. Your heartache is palpable in your writing.

Just be there for her. Tell her how beautiful she is to you and even through all of this .. you STILL see her beauty.
Talk to her about all the funny things you both use to do and the funny people you both use to know.
Recall with her all those loving times and the most memorable of times (the birth of your children, the marriage of your children, the vacations to fun places or the weekends spent at home). Tell her how you felt at those times and how much she meant to you then and now.
Tell her your memories of when you both met. Tell her how she made you feel when you first saw her.. or how you knew that she was The One.
Have these conversations with her.. heartfelt and deep truths that somehow (if you think back).. you'll realize that you never had these kinds of talks before.
She can't do much anymore.. but she can remember and recall. Draw her pictures with your words. Take her back to those times, with your words and memories.
Don't leave her side throughout this.
She's just afraid that you are going to feel she's a burden now. She's afraid to see horror in your eyes (because you find her ugly now) ... ***not that you do.. but that's how us women think.
Be sensitive and understanding. YOU be there for her.. and let your kids be there for YOU.

May God truly bless this time for you.

Answer 2

That has to be one of the hardest things is to watch your love of your life deteriorate. You are a wonderful and strong man. I truly have no advise as I have not been in the exact same position. But as my cousin was suffering from muscular dystrophy many of the feeling he expressed were the same. This is very hard on the whole family. Follow your heart. Did you guys ever talk about what if things like that were to ever happen? And if so what did you agree on? I have told my husband never to keep me on life support if that is all that is keeping me alive, so I wonder if you have had conversations like that. I also feel Kervorkian was caring even thogh what he did was against the law. Your wife needs you, and so do your children. How does this effect them and their day to day lives? Not only are you the husband but you are their father and will be around longer, you need to see that they prosper. If that means putting her in a home, so you and your kids can do things other than have your lives revolve around her you may need to. I know that sounds rough but you need to think about what they are not accomplishing when they have to take care of mom. Have a sit down with them. Ask them if things were different what would they be doing instead of rushing home to take care of mom. Consider their answer when desiding what is right for the family. God bless you and I wish you luck, and I will pray for your wife.

Answer 3

Remind your wife that you love her and that you would rather she be with you than in a nursing home away from you most of the time. She probably doesn't believe that that could possibly be true. She's also embarrased with her condition, and feels like a burden, so if you truly feel that she is not, tell her repeatedly so.
I wonder if you could get a computer like Steve Hawkins has, that he controls with his mouth. Anything that would make her feel like she has some control.
You surely know more about this than anybody here unless they have been through the same situation, so I feel silly even trying to give advice...but I wouldn't take her meanness personally. It's probably a defense mechanism because she feels so depressed and helpless.
If things get worse, I wonder if there is some way you could help her end things and not get caught...withholding food and water is acceptable in some situations. I'd look into it.
Your story is so sad, I feel for you.

Answer 4

Oh sweet Jesus I'm soooo sorry for you and your family, I can't even imagine what you must be going through..you all are going through a God awful thing,..can I assume that if you have hospice coming that she doesn't have much longer? Oh I wish I could help give you some advice, I can tell this has got to be killing you...she want to be in a nursing home and you want her at home with you...all I can tell you is Hang in there you are a good man and Husband to be standing by your wife the way you are....Good Luck to you and I will be praying for you and your family that you all will find some peace, comfort ad understanding during this time...God Bless you

Answer 5

If she asks to be put in a nursing home is because she loves youa nd her family and can see how much sacrifices you have to do to take care of her. She is being unselfish and wants to be out of the way so you can have a normal life... how caring and loving of her part,

Nursing homes are not bad or evil. They provide care for terminally patients 24/7, youc an visit there every day if you want.

I know that you love her and that you are giving her the ultimate test of love by taking care of her at home. She knows that she will get worse and that being in a Nursing home would be best for all.

RESPECT HER WISHES

I believe that she is right, Be strong! This is hard on everyone and I commend you for yoru hard work and your 19 year olds hard work.

Good luck

Answer 6

That sounds like a tough situation. Family is family which ever way you look at it. A marriage works on being there for one another and making the time to spend with your spouse. She is helping her mother and all but the question is why can't you go with her if she takes the kid's? The feeling of neglect kind of gives you a sour taste in your mouth when all you want to do is spend time with your wife and kid's. She has to understand that you have feelings to and that you are making the time to be with your family instead of going out and doing what ever. In today's society both partners bust their butt all week to make a living and support their family and when they finally have the time to spend with them it should be spent together. After a year of this it sounds like more of an excuse to get away rather than to be home with you and the kids. So instead of being long winded tell her how you truly feel and what's going to happen if this continues because people don't wait for ever and and time doesn't stop for no one.

Answer 7

You are a true loving husband, and I understand not wanting to put her in a nursing home. But I honestly think she feels like a burden to everyone, that's why she wants to be put in a home. If it's not going to be much longer, go ahead and put her in a home. At least the time she has left will make her feel like she's not a burden. You can still visit with her everyday,and her attitude may change. It might be good for all of you.

God Bless, and will keep you in my prayers.

Answer 8

my sympathy go to your family. I believe you must be a strong
christian. God Blessing be with you.
In life, "we do all our very best for our love one" ? and
when we seat to think about it " once all dust settle down"
We tend to ask, are we really doing the right things? Do we really help her through the difficult time and and the same time we are mentally drain to a trickle?
God works is wonderful, alternate care etc hospice with professional staff around to provide and at the same time you can take good care of your daughter plus yourself in order to support her physically and emotionally rather then both come to total exhaustion.
Think about it, you need to be in win win situation than to be in loss loss situation.
His way is wonderful remember His footprints,for He will not let u carry the burden alone!
These are all alternate and is the reasons why we had help,support, care groups, hospice and it is all His works and plan,
Prayer be with U, Amen!

Answer 9

Wow, if this is a real story, I feel truely sorry for you and your family. This kind of chronic illnesses can be very difficult not only for the person who is sick but the caregivers as well. So offen I see questions from morons whinning about how they are broke because the spent all their money on cars, big houses, etc...Cases like yours are no ones fault!

Try to find some near by support groups through the local hospital.



Good luck to you and yours.....

Answer 10

Please let me tell you how admirable I think you are....true love has no boundries and you are proof......and God will reward you in your time. I will pray for your wife and family. I understand what your going through and her pain isnt just physical. She feels like a burden to you and it hurts her heart. And maybe, when she is being mean...its for other reasons...she may think that you might give in to moving her to a facility so its easier on you. I dont believe she is doing it to hurt you but she may feel its best. It is a terrible disease to have to deal with....all of you. I also know that at times...you belive by helping her end her pain could be for the best...but please let god have control of that choice. It seems like you are a praying man....so just continue to do that and ask him to ease her pain......I'm sure she is doing the same...but she is doing it for different reasons......to ease your's. Please...continue to vent.....even if its just in a journal or outside at night to the lord......don't keep it locked up inside.....dealing with something like this is hard enough...but locking it up will slowly take more of a toll on you than you may know....talk...to anyone...everyone....a neighbor...minister....friends......I wish you the best of luck and may god heal all the wounds.