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biotron2000

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I'm Patrick and I'm 45. My wife, Jacki, 44, has had ALS for 6 years. We have no children. Jacki can't talk, eat, move her arms or hands, walk, or lift her head. I quit my job to care for her because hiring help would have cost more than I made. No choice, really. It's been three years since she was able to eat or walk. Thankfully, her neurologist believes in being proactive and she had a PEG tube and hoyer lift before she needed them. Were are just scraping by financially, having blown through all of our savings and retirement accounts just living.

I did everything myself for the first few years and got burned out. My family has been no help at all, but her family raises funds to pay for a caregiver to come in for a few hours Monday through Friday to get her showered, dressed and ready for the day, and I have her by myself on weekends. I manage to get out for a couple of evenings a week if I can get a sitter.

The problem is, and I hate to say this, but I'm ready. For three years, we have been in a holding pattern, and we just sit around waiting for her to die. The only change in that time is the loss of strength in her neck. (She has a computer with Dynavox software and she can still use it if we prop her head up, a task that needs to be repeated countless times during the day.)

I feel horrible for wishing she would die, but I hate seeing her like this and I miss the life we used to have. Selfishly, I also want to move on with my life before I am too old to live it.

Does anyone else ever feel this way, or am I just a bad person?


Thanks for reading,
Patrick
 
No Patrick you are not the only one that feels that way. Watching the progression of ALS is overwhelming. Being the primary caregiver is exhausting. I've always said that I didn't want my pals to die - just want it to be over. Death can't be as hard as watching this 24/7. I have heard other members of the forum refer to this as "the death watch" and it is true. Everyday is a new challenge. What's next? My pals is on a vent and this can go on for years. I cringe at the thought. Hang in there kiddo. One day at a time - one hour at a time. Don't feel guilty about wanting to move on. You are still a young man and that is a normal feeling. We all wish we had the life before ALS but that will never be.

Please know that you are not alone. There are so many awesome people on this forum that will be here for you.

Debbie
 
Patrick you are not a bad person. heck, you feel guilty for having feelings in desperate miserable situation, that automatically takes you off the naughty list.
Our lives are hard enough with out us being so hard on ourselves.
 
Patrick I am so sorry. My mother had a long course to and I used to wish she could be taken from her suffering.

I don't think there is anything wrong with thinking about,and wanting a life after. One of the innumerable horrible things about ALS is its ability to destroy family life too.

There will be a life for you after ( whenever that might be)

You are among friends here
 
Patrick it is ok. you are perfectly normal--it is not that you really want her to die, it is the ALS that you want to die. all of us feel that way and it doesn't make you a bad person to want your old life back.

your post, and the answers here brought tears to my eyes. we understand your feelings, and you are safe and amongst friends here.
 
Sorry Patrick this is such a tough go and you have been doing it for a long time, almost as long as Barbie. I am a relative newbie at 2 years, but although my husband is a quad he is still able to talk clearly, and I count it as a total blessing. Some days all I can do is keep my head down, and put one foot in front of the other, and pray. I don't think I could manage the way I do with out my the faith both my husband and I have. I hope you manage to get a break some time. I have said a prayer for you, and I want to thank you for being the man you are caring for your wife and hanging in there for as long as you have.

Paulette
 
Patrick,
Just wanted to say that as a PALS, I can find no fault with your feelings. think its normal. Felt the same way when my grandmother was dyeing from alzhimers. As a PALS, feel like my body is no longer mine. i think that most of us also have times when we wish it was over. Keep up the good work, feel free to vent here, none of us will take offense
 
>Does anyone else ever feel this way, or am I just a bad person?

:) *not* a bad person, an honest one! I often feel that way and I am on the other side of the street! Hang in there ...
 
I'm in the same postion you are, my Mom has had ALS for 6 years, the last two and 1/2 years have been awful. My Dad is her primary care-giver but we have also hired help. My Mom is 74. We can't get her comfortable and spend most of the day adjusting her and nothing really helps. She can't speak-no hand, arm or leg movement. She can still swallow enough to eat--soft foods only.

I know exactly how you feel and thinkt he same thing everyday . There are no solutions, just stay on this site and we all will try to help you. I'm also looking for head support issue. Try and hang in there!
 
welcome Patrick

your post is an example of the reasons we need a place like this to talk. You feel perfectly normal feelings, and the guilt that goes with the feelings is pretty normal too.

It's been said well already and I believe it is very true - I did not want the man I fell in love with to die, but I wanted his suffering to end and now nearly 2 months after his passing I still feel the same. I am glad his suffering is ended, that means I am glad he is dead if it is put harshly. But it does not in any way mean I am glad he was stricken with the disease. I am only glad he is not still slowly progressing downhill, but is flying free.

And that's just talking about my PALS. As a carer, the emotional expense is huge, the feeling of being drained and of reaching collapsing point ... I know that I have this huge need to 'recharge' since my husband gained his wings.

It's all very real, every single thing you are feeling and describing and what you are doing is as big as it gets! Don't ever try and play it down and think you should somehow not feel these things.

hugs
 
Thanks, everyone, for the replies and for making me feel welcome. It's nice to know I'm not alone in this. We used to go to a support group, but it's too dangerous for Jacki to travel by car now. Her head just flops around, and if we stabilize it, she chokes on her saliva. Can't win! So we stay home most all of the time. She hasn't seen a doctor in over a year, as her neurologist (and the ALS clinic) are two hours away.
 
I should say that although she has not seen a doctor in over a year, she has a nurse come out once a month to change her suprapubic catheter and check her vitals.
 
Welcome Patrick! I too am very sorry that you had to be here but everyone is so helpful and understanding. I too felt guilty about my feelings until I read some things on here and various other places that made made me see it differently. Like they said its not the person you want gone it is the horrible disease that has taken over your and her lives. I am 36 and since I was single I moved back home with my folks to help care for my father. I gave up the place I was living and the freedoms that come with it, lost a relationship, and the ability to go and do on the spur of the moment and there are many days I wish I had that lifestyle back, but what I and the rest of us are doing is special. We are all our pals have, and as much as I miss my old lifestyle I am so glad I am there and have been there to see mom and dad through this. I hate watching dad suffer and wish I could take it away but I can't so I do th best I can and stand beside him and assist any way I can. Are you not able to get hospice care? Dad is on hospice and they come and bath him mon-fri and a nurse checks him 3 days a week. I don't know what the cost of hospice care is as we never see a bill with the insurance they had. Hospice also cover his meds pertaining to als and whatever equipment he needs.
 
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