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To Newbie,

You have been an angel and we all can imagine how you feel.
Your husband mus feel very bad to be in his condition and he knows
he will be leaving soon.
Have you thought that by becoming meaner, he might make the parting
easier for you. Who knows what happens inside a sick persons head.

Do you talk to him about your frustrations?
Try and get a rest and consider a hospice.

PeterA
 
That is a very interesting perspective Peter! Kinda like in the kid's movies when they must get rid of their beloved dog! They try to treat it badly so it will want to go. This ploy was even used in one of the Shrek movies...(sorry, I've seen every kid's movie out there with my son)

If that's the case, then I would have to tell my husband that no matter how badly he treated me, I still love him. But I would still use tough love to straighten the situation out. Perhaps a confrontation along these lines is in order Newbie!
 
Thanks for support, re: anger, frust, guilt

Thanks for all the suggestions everyone. For a little history, my husb. is 63 and I am 56. He has always been a really nice guy. Of course, every couple has their mad moments, but overall he has been kind, involved, supportive. I have been wondering if maybe his being self focused has to do with his literal survival being on the tip of his tongue (the choking and swallowing problems), and if it takes so much energy for him to just stagger from one place to another in the house exhausts him to the point of not having enough energy to really care about anything else. I've also wondered if it could be onset FTD or a side effect of the Rilutek. The latest is that earlier this week, his Dr. saw us both and really got involved - got counseling referrals for each of us, got hosp. social worker involved, ordered home suction device, contacted home health agency for some assistance, and also a respite care place in our county. I have a lot to follow through on this coming week. Dr. pointed out to husband that he has every right to choose not to have a surgery that would eliminate the choking but would cost him his sense of taste (almost no other pleasures left for him except taste now) ... but he also pointed out that his wife needed to be able to survive psychologically, and so recommended that I leave the room when my husband eats, saying that if a fatal choking event happens, then it happens... that this is my husband's choice and not my responsibility. Wow. Strange how I could not see the forest for the trees.
 
I kind of had some of the same experiences with my father, except he was always nice and appreciative to me (not to everyone, but to me). I eventually had to start taking lexapro (antidepressant) and it did help some. My dad's choking scared everyone except me. It was certainly unpleasant, but I knew it wasn't going to kill him. Others thought I was kind of heartless with that, I think, but what can you do? I didn't leave him when he choked, but I didn't get frantic. I also did the manual impaction removal. I didn't mind at all. He was on the toilet, and I could feel through his skin that that was what was there. I put on gloves, did a little bit, asked him if he could handle that, and when he said he could, I did the rest of the job. He was always either constipated or had diarrhea. I, too, had to clean the bathroom daily.

I'm sorry you're having such a rough time. I totally understand.

Mary Helen
 
Mary Helen you are a saint. May God bless you, and may your dear father rest in peace.

Irma
 
Newbie, I am just speechless. I am just sick over your situation and I know I have nothing more to add to the rest of the posts. It's all excellent advice. So grievous. Bulbar ALS is the very worst. I don't know how to help you tread this quicksand you are in... but to find help from everywhere it can be given. Take time for yourself to recuperate and regroup each day, and make time to do something each day that gives YOU fullfillment. I'll tell you this: what you are doing for him is far beyond the call of duty and you will be rewarded.
You will have no regrets if you can hang in there and just do your best, as you have been all along. This will be over.... continue to that day with all the love and grace you can muster from deep down inside you. I wish I could meet you and give you a big hug..... and take over for you one day a week so you could be free then.
 
Hi Newbie, Before your post I thought this was just something with my mom and didnt have a lot to do with the disease. I thank you for your post and letting me know I am not alone. My mums attitude is, well its pay back time, I did it for you for long enough. I was due to move to uk to be with my partner and all plans got put on hold, Im having a baby and decided to have it at home to be with mum, her attitude is, well you cant go cos Im here and you have to look after me. I have other siblings but they dont get the attitude off her that I get. I am the closest to her and always have been, we had a great relationship and to be honest still do, but my tongue is sooo sore from biting it!

I love her dearly and most days are great, but she can also be selfish. Going to the toilet in a camode so that I have to clean it rather than go on the stairlift to go upstairs to the bathroom, being pregnant she knows this makes me sick but her answer is, well i had to go and didnt want to go upstairs, tough.

Anyway I could go on complaining with stories and stories, but i would bore you. So I just want to thank you for letting me know this is the disease also and not her being intentionally horrible to me! I have made her feel guilty back, saying i need to go out and im trapped in the house etc and sometimes its worked and I get to go out with friends without her telling me that I dont care about her!

Not much advice to be honest as I havent found a solution, but I want you to know thats they dont really want to be horrible, and your husband does love you. I keep saying, I have a place in heaven!

ps. my mom is on very soft anti depressants/relaxers to help her sleep at night? You might suggest this to your doc, they are called amytriptyline
 
It sounds like your doing a great job but you're frustrated. It's understandable. It's OK to blow off steam! This is all new and you're not used to this kind of treatment. My husband acts so different now, we're just getting started with this. If I were there I would give you a hug and let you know you are appreciated. God bless you and your husband.
 
Just a quick comment on one topic. Manually removing feces may become necessary for any PALS at some point. As unpleasant as it is, if the PALS is sitting on the bedside commode and reaches the point of no return but can't finish, you have no choice. You can't wait for medicine to work, and it is too late for an enema or suppository. This happened a couple of times with my wife. She said afterward that she knew I really loved her, to do that for her. In her case, it resulted from too much fiber. We were using fiber as bowel control, and she was not getting enough liquids.
 
Comments To Newbie

As Many Of You Know, My Beloved Husband, Horace, Lost His Three-year Battle
With Als A Few Weeks Ago, Dec. 3rd. I Have Not Been Able To Bring Myself
To Come To The Forum Since Then, But Something Drew Me To It Tonight. I Am
Glad I Did. My Heart Went Out To The Caregivers Once Again, Esp. Newbie. My
Husband Did Not Have Bulbar, He Had Limb Onset And He Spent The Last Year
Of His Life Lying In Bed With His Mind In Great Shape, Watching And Experiencing His Muscles Deteriorate. It Was Agonizing For Us Both.

Bulbar Has To Be Worse, But Als Of Any Kind Is A Monster Disease. I Don't Understand Why Your Doctor Has Not Ordered Home Health For You Because
They Had To De-impact My Husband Many Times, And At The Last Few Months, He Had To Have An Enema Every Other Day.

I, Too, Am Still On Lexepro, And Could Not Have Gotten Through His Als, But
It Was A Day By Day Process, Some Days Hour By Hour And I Went Through Lots Of Emotions Daily, Some Not Pleasant For Him Or Me And We Were Both Exhausted At The End, But Now, I Would Give My Right Arm To Hug Him One More
Time, Hold His Hand Again And Tell Him Once Again How Much I Love Him. So,
All You Caregivers, Don't Wait Till It's Too Late To Not Say Everything You Need To Say So There Will Be No Regrets. Jackiemax
 
A BIG Thank You To All Care Givers

A picture is worth a thousand words.
Jesusgreeting.jpg
 
Last edited:
As Many Of You Know, My Beloved Husband, Horace, Lost His Three-year Battle
With Als A Few Weeks Ago, Dec. 3rd. I Have Not Been Able To Bring Myself
To Come To The Forum Since Then, But Something Drew Me To It Tonight. I Am
Glad I Did. My Heart Went Out To The Caregivers Once Again, Esp. Newbie. My
Husband Did Not Have Bulbar, He Had Limb Onset And He Spent The Last Year
Of His Life Lying In Bed With His Mind In Great Shape, Watching And Experiencing His Muscles Deteriorate. It Was Agonizing For Us Both.

Bulbar Has To Be Worse, But Als Of Any Kind Is A Monster Disease. I Don't Understand Why Your Doctor Has Not Ordered Home Health For You Because
They Had To De-impact My Husband Many Times, And At The Last Few Months, He Had To Have An Enema Every Other Day.

I, Too, Am Still On Lexepro, And Could Not Have Gotten Through His Als, But
It Was A Day By Day Process, Some Days Hour By Hour And I Went Through Lots Of Emotions Daily, Some Not Pleasant For Him Or Me And We Were Both Exhausted At The End, But Now, I Would Give My Right Arm To Hug Him One More
Time, Hold His Hand Again And Tell Him Once Again How Much I Love Him. So,
All You Caregivers, Don't Wait Till It's Too Late To Not Say Everything You Need To Say So There Will Be No Regrets. Jackiemax
I ditto your response to newbie. I lost my husband to ALS 9 months ago and I know exactly how you are feeling. Our ALS Assoc. is starting a new group for Survivors of ALS and hopefully this will help me with all the emotions that I'm feeling. This ugly disease leaves the family and especially the caregiver (myself) with alot of unresolved emotions regarding ALS. For all the caregivers, please live each day with your PALS like it maybe your last with them. I thought that I would have a warning or a sign that we were getting close to the end it didn't happen that way. My husband was very weak and also had bowel issues but nothing that would make me think the time was drawing near. He was fine the night before and when he woke up he was in the active stage of dying per the hospice nurse.
 
I Hope All The Caregivers Are Reading These Latest Posts. Not For Guilt
Purposes, But To Help You Understand We Don't Always Know When Their Death Is Imminent. The Hospice Nurses Had Told Me How They Tho't It Probably
Would Happen, So Up Till It Actually Happened I Was Watching For The
Signs That Did Not Happen. The 'mottling' Color That Was Supposed To Be
On His Feet Showed Up On His Face A Few Moments Before He Took His Last
Breath.

I So Wanted To Say More To Him When I Realized He Was Slipping Away, But
Did Not Get The Chance.

I Also Disagree With The Person That Said That Newbie Was Not A Victim, Bec.
She Certainly Is A Victim As Well As Her Husband Who Has Als. They Both Are Suffering.

You Are All In My Prayers. Jackiemax
 
Respite Care

Hello. I ditto what others have said. I understand your sadness and frustration totally. Our ALS association here in Oregon has respite grants up to $1000 to give you a much needed break, hire someone to come in a couple mornings a week or take a long weekend, whatever you need to do. Please check into this option. www.alsa.com

Love,
Holly
 
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