Need some advice

[ebeck]

Hi. My name is Erin and I am new to this site, so I hope there are some caregivers out there that can relate. Thank you to those that replied to my first posting. My husband was diagnosed with ALS May of 2007 at age 35. We had a baby girl the following October and in February we moved long distance. Needless to say, things have been extremely stressful, emotional and busy. After a long and brave struggle, he quit his job last December and went on disability. I quit my job in March to stay at home with him and Morgan to become full time Mom and full time caretaker. I have been going for so long but all of sudden, I feel a breakdown. Chris is angry so much of the time and of course he takes it out on the person closest to him, me. Up until this point, I have just let him say whatever he feels like to me, because I can't comprehend how hard this is on him. However, I blew up last night after he was nitpicking me on very minor things. I know he hurting so bad, but I am freaking out. This morning I came close to getting in the car and driving away from everything. We have known each since we were 12 and I have never loved anyone like I do Chris but he is becoming very verbally abusive. I feel so alone. Are there any other caregivers out there dealing with lots of rage and anger?

[crystalkk]

Hi Erin,

I am so sorry for what you are going through. I am not a caregiver, but I did read post about the same thing, maybe someone else will answer. Is he on anti-depressants or any thing for anxiety?

If he is not totally dependent on you, take a walk with your daughter, try and get out as much as possible it really does help the mind.

We are here for you if you need to vent, someone is always on 24/7.

[BethU]

Hi, Erin ... I am so sorry for what you are going through. Sounds like you are doing a magnificent job of coping with your husband's lashing out.

I don't know if this would be any help, but my insurance (Blue Shield) sent a social worker out to talk to my husband and me, and see if there were any services they could provide. One thing she mentioned was counseling sessions, which might help your husband. Perhaps you could check with your insurance or your neuro's office and see if these kinds of services are available.

Also, perhaps his rage might be part of the "emotional lability" and the FTD dementia that sometimes goes along with ALS. If so, maybe your husband's neuro could prescribe something to help him stay in control. It must be hard on him, too, to be angry and raging all the time.

Bless you and all the other caregivers everywhere for all you do! And all you put up with!
Hang in there,
BethU

[lizzy]

Hi Erin,
I too am the wife of a man with what dr's believe is ALS (awaiting official dx). He is only 37 and we have 2 kids. I know what it's like to come to the end of your tether when you thought love could handle it all. I am there right now too.
I'm sorry you are having to deal with his verbal pickings, it doesn't help to have to be the positive one holding up the emotional end as well, I know. You must be so overwhelmed with a toddler too, do you have any family or friends for support?
Can you try to get away just for coffee every now and then?
I'm sorry I cant offer more supportive advice, just know that you are not alone and you aren't the only caregiver to want to run away, or that has. Remember that you have to stand up for yourself too. You are going through this together, which means he has to be considerate of you as well and not cause you to break down because of his nit picks.
Be strong, but not too strong that you forget yourself.
Lizzie

[whimsy_1971]

welcome

I want you to know that you are not alone in this feeling. I have and still do become so angry and upset that I too explode. I hate what this disease has done to me as a person.

I take one day at a time, but sometimes you have to take one mint at a time too. There is so much to take in with this disease and it becomes so overwhelming. The Als Clinic usually have a social worker you can talk to as well and ours is for free. I havent spoke w/ her yet, but Im thinking about it. What can it hurt, it certanly cant do any harm.

Im sure you are doing a great job.

This is a great place to vent if you need to. So many of us have here, and we will be here for you as well.

Just remember you are not alone in this, you have us. What you are feeling is not abby normal. This is hard, not fare, and down right unbearable sometimes. You hang in there though.

Christy

[ebeck]

Thank you all for responding to me. I really needed some friends today. We were supposed to have Hospice come today actually, but Chris cancelled. We have used them before and they were extremely helpful, but we had to stop hospice in order to get his electric wheelchair. He is of the mindset that nothing can help him and is very discouraged by healthcare providers. It would take me a book to explain to y'all the saga of our journey though doctors.

He realizes that he gets paranoid but can't seem to control it. He has been on a couple of antidepressents, but does not like the way they make him feel. He does take Zanax to calm him when he is really raging.

I am going to try to get out more, but I need someone here with with him. Last time I left, I found him on the kitchen floor. He is very stubborn and gets in these moods, like today, where he tells me to get away from him and leave him alone. He has very little use of his hands and arms and can still get around the house with a walker. The paradox is, he tells me to get away, but he needs me to give him medicine, food, shave, shower etc. I can only understand him now about 3/4 of time which makes him even madder.

I think tonight I will call one his friends to come over and try to reason with him. He rarely wants people over, but I think I just need to invite people over and go against his wishes.

Thank you so much for your advice and letting me vent. I hate this disease. It has changed my husband and I into two people I don't know. I have so much respect for y'all taking care of multiple children and a spouse. It just seems like such an impossible road to raise a child and fight ALS. My mom is 10 minutes away and she took Morgan (the baby) the past couple of days because I did not want her to see me crying so much.

[brendapals]

Hello Erin,

Everyone is right, you are in the right place to vent. And sometimes that is all you can do and you will feel better. My husband is working his last shift at our city fire dept today, he is retiring after 26 yrs. I don't think he is ready to be my sole caregiver, and I'm hoping that won't start for several years yet.

But it is hard EVERY single day of my life. Trying to keep up with our boys' schedules keeps me busy though. I don't have any extended family to help us out, I'm glad you could let your mom take your baby for a while. I didn't look to see where you live, but maybe the weather is nice where you are, and you can just sit outside with a glass of tea or something for a few minutes.

I wish you well, and feel free to vent anytime, you'll get plenty of support!
Keep the faith,
brenda

[trying to stay positive]

Hi Erin,

I'm so sorry for what you are dealing with. My husband was DX with ALS 8/07. He also gets angry sometimes. When he gets like that I tell him to let me know when he needs/wants something, and then I basically leave him alone. Not literally, but I just ignore him for the most part. So far he has calmed down within a day or two at most. He is still able to be home alone for periods of time, but there is no way of knowing how much longer that will for.

What I am currently doing is seeing a therapist once a week, as well as my minister a few times a month. I was taking an antidepressant, but have been off them for a few months now. Sometimes it helps to journal. And calling a friend who understands the situation and just venting your frustration can help too.

Have you checked into respite help, or home health care? Even a few hours a week would give you a break that you could look forward to. And of course this forum is a wonderful outlet.

Linda

[swi71]

Erin--
The anger is part of the grief process, but it is so hard when you are the recipient of it. There is a little book that is very easy to read called "Good Grief," that explains the grief process well. You should be able to get it from a hospice or minister. Emotional problems can also be FTD, as BethU pointed out. Gerald was put on Lexapro for lability--that helped his emotional swings.
Sadly, I (the caregiver) was the one who had the most problems with anger at the beginning of Gerald's (2002) diagnosis. My counselor suggested doing something physical that would not hurt myself or anyone else to help with diffusing some of it. One thing he said was to get a set of old dishes (like at a garage sale) and just go somewhere alone and smash them. I didn't end up doing that, but I find walking my dog or tearing up paper that needs to be recycled helps.
The reason your husband probably targets you is because you are "safe" (you love him) and because he may be trying to push you away because it hurts so bad.
Do try to get away some and do something that helps you cope too. If you can get someone to stay with him for just a little while, it will be better for all of you.
Caregiving is tough--I found I was not cut out to be my husband's sole caregiver early on, but I wanted him to be at home with family. I have a 24/7 caregiver who can take care of his physical needs (funded by insurance money and disability payments).
Prayers,
Sharon

[jimercat]

Look, I don't want to sound harsh, but you've got to stand up for YOURSELF!

Yes, we all give more than most would because of this disease, but you have to remember YOU!

I have established from the beginning of this journey with my husband that if he becomes belligerent, he will suffer unnecessarily. That is not to say that I will withhold care, but that things would be taken care of a lot easier otherwise.

I guess it depends on the personalities involved, but humor really helps in our situation.

Having children in the mix does complicate things (understatement). It is good your Mom came and got your child. Maybe more scheduled times like that would be helpful.

I hope you will be able to express to your husband that you cannot be superwoman. He will be upset, but I think if you remain strong in the face of his stubbornness, he may give in.

Please let us know how things are going. I try to go around my husband when he's being a pain in the a$$, by calling his friends like you have done. Works pretty well. :mrgreen:

[nurburch]

WOW,

I am so glad I took a few to read the post today. My husband is doing the exact things to my kids and myself. Hateful and angry to the extreme. We too are the very ones who take care of everything for him. I sometimes want to just go outside and scream....but usually just tell him I will be back when can be nicer.

I am sure that most of his issuses are from being afraid to die. He can't alone now and has had what I call anxitey attacks twice in two days. I am sure that the ones who are there everyday get the worst of the
emotions. I called hospice myself on Mon. to see what is available to us. They are coming today at 1p.

I have noticed changes in swallowing and chewing of his food. Boy does he get mad when we talk about
that. I am so frustrated with the way he treats the kids. I just can't handle anymore. So i am hoping hospice can offer some counseling for us all.

Erin, I too want take the kidos and leave at times too. I hate what this terrible diease has done to my family. We are so angry. Just know that we are not alone in the awful road that is ALS. It is wonderful
that we can come to the site and get advice or just vent. thanks for listening. I will keep you and yours
in my thoughts and prayers.

sheryl/ wife of scottie dx nov 06

[ebeck]

Wow, I am so glad I found this site. Everyone that has replied to me has been so helpful and nice. This morning reading the postings made me cry. I feel so much better knowing there is a place of understainding. However, I wish I could give all of you a big hug for the pain you are dealing with. I hear the hurt in your voices. Chris is still not talking.....getting more and more worried about him. My friend's pastor is coming today to try and talk to him. It will be a surprise, so we will see how he reacts.

Sheryl- Chris and I are both originally from Dayton. His parents and my brothers and sister are all in the Cinncinati/Dayton area. If you ever need extra help, I can give you their phone numbers. I know they would be more than happy to help you. They obviously would know what you are going through as it sounds like are in a similiar situation to me.

Thank you everyone for making me feel better today. You were just the support I needed during my breakdown. I will be on this site more often so I can try to support y'all during your breakdowns.
Erin

[lostinlouisville]

Wow, I am so sorry for what you are going through. I wish you both could have enjoyed parenthood a little bit before this hit. You really opened my eyes to how I have been acting. I am not dx. with anything yet but just feel I am losing some kind of battle everyday. I am a wife and mother of 7. My older three in their 20's and my husband have been getting a lot of anger and bad attitude from me and this is not normal. I know I am being unbelievable angry and upset and just can not make myself stop. I have always been what we jokingly call the " CHEERLEADER" of the family and with 7 kids that is important because no matter what their ages they have problems and they need mom to be the stable one. I know I upset them and need to do better. Thanks for giving me the other side of the picture , my family would not say anything negative to me right now, but sometimes you need a gentle reminder that how you act affects everyone when you are family. I will keep you and your family in my prayers.

[CindyM]

That's what we are here for, Erin! If you get a chance, try a search on caregiver abuse from the tab at the top of this screen. Lots of caregivers have learned tricks of the trade to deal with cranky PALS! And everybody is right- you need a little space now and then. :-D Hugs, Cindy

[Linzann]

My husband (28) was diagnosed April of last year. And has all the same anger issues. Telling me to get away on minute and the next asking me to help him to the bathroom. He was on Zoloft but had to stop taking it because it would interfere with in trial medicine. I wish he could go back on it, it really helped. I'm glad I found this post.

[jimercat]

Welcome Linzann! Sorry about your husband.

Hope you find comfort and hope being a part of this forum.

[califsand]

I went through the EXACT same things with my father and it was very frustrating. I tried to stay calm and not let it get to me but sometimes it did. Do you know what that taught me? That getting upset with him to where I could tell him how unfair and hurtful he was being was the only way to get him to see how awful his behavior was. I always felt guilty afterwards but he became more patient with me over time. It is a horrible thing that our loved ones are going through and it is horrible for us as well. We want to be there for them in every way possible and in their frustrating sometimes they push us away. It's not personal, they are losing their independence, their pride, their way of life and their lives... but it is hard not to take it personal.

As my fathers illness progressed he became less mean and once he stopped fighting against using a wheelchair and accepted it, he became more receptive to help for the other things he needed help with. When he moved to Hospice he allowed his friends and family to visit more frequently and has mellowed and seems to appreciate them now. It has been a tough battle to get to this point where he is actually content... but he's there and I hope that your husband can get there sooner rather than later.

I didn't read everyone's comments but I'm sure that someone must have suggested that maybe your husband can come on here and talk to some of the others that have ALS. It could help him to know others understand EXACTLY what he is experiencing. However, if he is anything like my Dad, he won't want to surround himself with others like him... his solice has mainly been in getting drunk each night (I now put the Irish Creme straight into the g-tube) and watching animal planet. Acceptance comes in waves and your husbands youth, as well as him having a young child, probably make this all the harder for him to accept. He doesn't want help, he resents needing it, he hates what is happening and maybe he thinks that by refusing what he needs that he can deny the illness. Unfortunately the mental part of ALS is brutal for some and while we want to be perfectly patient, it may not be the healthiest choice. Talking to him bluntly when he is NOT in the middle of a tantrum may be an option... that's the best thing I can suggest. It helped when I did that, when Dad was rational enough to listen and feel some shame for his behavior. Maybe it would help with your husband?

Take care of yourself, get the help that YOU need and lean on us here... we understand and we care deeply.

Sandy

[hopingforthebest]

Dear Erin

Was so glad to read that your Mom is so close by. That is blessing for sure.
I am so sorry that at your young age your husband has this disease. My husband is 58 and I think that is too young.

I will pray for your husband and for you! and Morgan too:)!!!

Patty

[kelly]

Erin,
I hear everything you are saying. I think the anger is the hardest thing to deal with! I consider myself a generally happy person..but the anger is draining. I understand the anger, but I also want my husband to find peace..and live while he can. Most importantly, I want my children to see that their Dad is a fighter..and intelligent, funny, caring man that he is. The stress involved with this disease is incredible. Please know that I understand everything you are saying...if you ever want to chat..let me know. Fondly, KR

[ebeck]

I can not tell you how comforting it is to read all of your posts. I have not quite figured out this web site and do not have a lot of time and patience so I hope this touches base. I have taken a little advice from all of you. Chris and I have had a lot of talks since I first posted and we actually had 3 glorious days together as a family getting along. Things have since slid back to anger and bitterness but I am hanging on to those days :) But at least he talked to me and now I know he is depressed and angry at the disease. I am also aggressively taking your advice by pulling myself out of isolation. I have been inviting people over without asking and told some his friends to just stop by the house. Sometimes it really helps Chris to have people over but he will never okay the visit.

I have talked to his close friend and we both agreed that Chris is sliding over to the acceptance period of his grief. Up until this point, he firmly denied that he had ALS and that they just haven't found the cause of his symptoms. After a long trip to the ER a couple of weeks ago and the 5th doctor to tell him he has ALS, I think a lot of this extreme anger is reality checking in.

I know y'all understand but nothing in the world could have prepared us for this test and journey of life. It's hard for me to remember how I thought before Chris' diagnosis. It has changed us forever. Fortunately for Morgan, I think I will be a better Mother because of it. I don't take things for granted anymore and I am a more understanding, patient, calmer human being.
Peace and Love,
Erin