Guilty feelings

[jkungle]

Sorry, I just posted this in another section which may have been incorrect....

Hi I am new to the forum. My wif (Penny) was diagnosed about 10 months ago. She is 54 years old and is confined to a powered wheelchair. She has no leg mobility and arms are 80% gone. I work until 5pm. Her mother comes 3 days a week, her sister comes one day a week and my company allows me to work from home one day, and I am home on the weekends. We have hospice, 3 days a week an aid for showering and 2 days a massage therapist, and nurse once a week. My question is going to sound really shallow but I am having a hard time dealing with what it has done to our lives, and my feelings of guilt. This is the hardest thing anyone could ever go thru. It has torn our family upside down. My wife and I cry alot. We are both on depression medication. I have horrible thoughts... Right now I struggle with things like... well when I get home from work, I take my wife to the bathroom, then we eat and then typically sit and watch TV. Penny has alot of anxiety, she gets uncomfortable often and asks for me to come over and adjust her leg, clothes... And I want to help but I know inside I am bothered. It's not that I don't want to, I think I am just pissed at god (if there is one). I am still very angry about this whole thing and have a hard time believing anymore. When I get to work it is constantly on my mind. I think to myself, I want to help Penny in every way, I want to be a better caregiver and give my life to her. But then, by the time I get home it all starts over again. Please dont misunderstand I deeply love my wife, but I have these feelings and know I would be lying to myself if I didnt admit to it. Please Help

 

[ottawa girl]

Welcome to the human race! You are normal. Your feelings are normal.
Your life is abnormal.

You love your wife... It's the ALS you hate. We all do.

While you are doing a lot for Penney, what are you doing for yourself? You need an outlet too. Otherwise you will crack up. Please seek counselling from a trained person, be it a referal from the ALS clinic or from your physician. In addition, do you have a friend who can come over one evening a week, or every two weeks so that you can go out with friends, or see a movie, or just go for a walk or to the gym? It's imperative you take care of yourself, mentally and physically. Are there clubs in your area, dedicated to handicapped people, who can take her out as well?

You cannot continue the way you are, because your world is shrinking and that is unhealthy for both of you. Please do not feel guilty, you did not wish this upon her or your marriage.

It is a tough road, so call in reinforcements. You cannot do it all.

I am really happy you joined the forum. We are here for you!

 

[vickim]

Elaine is right, you need an outlet to relax , rejuvenate and be yourself. I am not as advanced as your wife, but my husband goes bowling one night a week.

He has a stressful job on top of dealing with things at home. It makes him happy which makes me happy.

Have a discussion with your wife and explain how you feel. My husband and I have discussions all the time even though they can be hard. We have found that talking about it helps, then no one is tiptoeing around each other and feeling don't get hurt and resentment can't creep in.

I wish you peace. I am sorry you have to be here, but very glad you are. We will listen, laugh and cry with you. There are no wrong feelings or stupid questions here.

 

[Barbie]

Please, Please do not feel guilt for being human! your feelings are natural--we are creatures who love our own comfort even as we care and worry and love others.

Every single caregiver I have ever met here or in person feels that guilt at one time or another and sometimes all the time. It sounds like you are doing a terrific job despite everything. Exhaustion is probably your biggest problem...you need to get a little rest and "me" time and not feel more guilt about it.

If you could get out to do something for yourself once a week for a few hours your attitude would improve I promise. Ask Hospice if they have volunteers who will sit with your wife one evening a week so you can go out to dinner or a movie with a friend. Or perhaps your wife has some friends ffrom before who have asked if there is any thing they can do--well, they can visit and lett you get out. Or even if you have any kids--they could do it.

I try really hard to get out and I know I handle everything better. if fact, I am on my way out to dinner right now with a girlfriend. they kids (teens) are feeding dad and watching TV with him tonight. they don't mind since it is only once in a while, and He may miss me but he knows I need it.

Please hang in there, you are a good person. We are here for you...

I

 

[eyeoftheestorm]

There are no guilt feelings to be had , be thankful you do everything you can . I have lost 6 family members to this awful desease . My little brother 49 yrs old was the last for now . I moved in with him to care for him . I knew I was doing everthing possible to keep him comfortable. He is gone now And I am also at odds with god . You are not alone in this . I understand . God bless and stay strong .
Sandy

 

[eyeoftheestorm]

If you "ever" need to talk message me.

 

[jkungle]

Thank u all for the support. I have heard that a lot that I need to get out. I do every now and then to run to the store. Or something. It actually feels like I am in high school, it feels like the world has been lifted off my shoulders. But I find myself calling Penny and asking if she's ok, multiple times and hurrying back. It also feels like I am moving on without her. Almost like I am expecting it to happen and I need to get a jump start on my second life. It's a really bad feeling. I find myself thinking what it will be like when I don't have to worry anymore. I don't want to loose her but it is so hard to watch this happen to my HS sweat heart. She was most athletic in her class and so active, and to see her now....... The other day my daughter took Penny shopping and I stayed back to work in the garage. It felt great because I knew she was in good hands with Brittany. But then for whatever reason I looked outside and had a feeling I haven't had before. The feeling of what it will be like without Penny in the world. You know? Like she will no longer exist and people will move on and forget about her. It was a very hollow feeling..... Oh we'll thanks again

 

[vzandt]

Don't feel guilty. It is soooo hard. My husband went to a football game with the kids. Three days. I was so excited. I would clean the house. I would watch what I want on tv. I would turn on the music loud and dance in the living room and sing out loud ( I cannot sing at all) it didn't happen. I was so lonely I cried. I missed him so much and still worried..even though the kids were taking care of him. So when your with her..your tired and worried. And when your not..your still tired and worried. What's going to happen when they're gone? I'm so scared of that loneliness .i can be in a room with 15 people and still be lonely for him. Yes..I think we all have that stupid guilt. But it is stupid. We are doing the best we can.

 

[cubcake]

I'm petrified of life without him. I cry every time I think he might not see tomorrow, and then feel guilty that I'm wanting him to continue to struggle so that I can have one more day.

 

[johnnyliverpool1]

its normal that at times you feel irritated when asked to help for the umpteen time...specially after a days work...then the guilt jumps in.....but it is an irrational thought with no basis....after all you never refuse help..... when someone you love passes theres always guilt, always......a feeling of relief that they are now at piece is quickly replaced by the irrational guilt.....relief and guilt combine to endanger your own mental health....think it through logically...you are doing a great job..praise yourself..god bless, johnny...

 

[jkungle]

This forum (although I'm not sure how it all works) is wonderful. I have poked around (just wondering) looking at people who share the same life I am living. WOW, I am. not alone. I had another night of guilt last night, not good for Penny, she got up 3 times and I had that same old horrible feeling inside like my sleep was more important than hers..... Sandy, your brother was so young... I can't imagine what you have gone thru. You are one hell of a person. I look at all those pictures out there and you all are just like Penny and I. We too have a great family and have had great vacations. It's so sad to see the families that have been torn apart by this disease. I put Penny to bed about an hour ago..... I am drinking wine and crying.....it helps me. I saw pictures of people bed ridden and with ventilators ..... Wow it's hard to see what is coming.... I hate this...

 

[HelenL]

Are you and Penny involved in any MDA or ALSA groups? They're very helpful in working your way through some of your feelings, both as the PALS and the CALS. I've met some good folks there... and its good to know you're not alone in this.

Penny is a bit more advanced than I, but we're about the same age. It may help her to come onto the forum as well, some use Dragon or the speech to text programs on the ipad.

And all you can do is take it one day at a time and try to keep livivg your lives. No guilt allowed...

 

[jkungle]

So today I tried to get some time for myself. I have done woodworking as a hobby for most of my life. Penny has helped me do art festivals for the past 15 years.... I do clocks, wall mantels and wine racks. Last summer was the first time I have ever done a show alone, Penny was unable due to several back surgeries. Penny has seen me work/build with my hands for our entire marriage. It has always been a love of mine and a creative outlet. Today we got up gave Penny and myself a shower, made breakfast, started some laundry and eventually made it out to the shop. I didn't want to leave Penny alone in the house watching TV cause that's all she gets to do. So I brought her out to the shop with me. She sat and watched as I tried to do the things I used to do in a woodshop. I must admit, I do have a short temper and when things don't go right in the shop I swear and occasionally, when I am REALLY frustrated have been known to throw a thing or two. But today was pretty much like many days in the past. I made some mistakes, And I got frustrated. But unlike many times in the past, today I buckled. I was frustrated and really wanted to throw the hammer on the floor. But today was different. Although those raging feelings went thru my head, today, I calmed myself and bent over my workbench and cried. Penny watched. I couldn't stop crying. This feeling has Ben coming on for quite some time. I don't know if its just me getting old or my eyesight or what but I know I can't do what I used to do. I have never felt that way before. Penny watched and never said a word.

 

[jkungle]

Penny talks to a social worker from hospice, I have not yet but I am going to set something up next week.

 

[HelenL]

I think that would be a great idea. You both have a "new normal" and it takes time to adjust... Please talk to a doc to see if a mild anti-depressent may help you through this phase. I know I spent weeks trying not to cry at first, and trying to hide it from my kids.

Remember how lucky you two are to have each other and see if there's a trip you can take her on if possible? Even a day outing...