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Good one, Sharonca. I bet my friends and family would like me to get one of those bidets, too! :-D
 
Check out the bidets on Home Depot. Or google bidet toilet seats. The cost is from around $400 to $900. I'm waiting on my insurance money and then I'll be spending away remodeling my house. The toilet seat is the first thing! Gotta get in some practice.

Sharonca
 
Hi all,
I am so glad that I read your post today. I am facing these same issues with my husband. He doesn't want
anyone else doing anything for him either, but he is not being very nice to the kids and I. This diease sucks
the life right out of everyone involved. My kids shouldn't have bare this rough road. I am considering getting
someone to come in and help. The stress level in our house is off the scale. My husband was diagnosed nov o6 and can't do anything for himself now. He is in his wheelchair all the time and we take care of everthing. He is
or appears to be so ungreatful. I am so glad that we are not alone in this......i feel awful. I too have to
work fulltime and take care of the kids and their sports ect. Maybe it is just too much now. going on two
years. Well thanks for sharing and listening. May God bless you all.
sheryl wife of scottie
 
Sheryl, I feel that way too some times, that Brian is ungrateful. I feel like hired help that he barks orders to when I'm doing something for him (manual jobs he used to do around the house) and I feel he expects more out of me then I'm physically able to do. I'm a small girl! But honestly, I think it comes down to him still being so angry and frustrated that he's not able to do it himself so it's taken out on me. When I talk to him about it, he hasn't a clue that he has spoken that way or acted that way. I keep telling him I'm going to record him and I may just yet!
 
as wives, you are all wonderful and your husbands should all be glade they have you and realise how lucky they are. my husband left me for some one else when i started having problems. my son was 14 back then. he helped me a lot. he said he would never wipe my butt. but when the time came he did it, and told me thats how much i love you. i finally had to hire help. he still helps me on weekends . he is now 19, and i wish he would have a social life but we cant afford to pay for weekend help. i already pay for help monday-friday and now my helper wants more money. i have four sisters and three brothers and would just like a visit onces in a while. my parents help me on weekends but they want my son there too. they dont understand what my son goes through.
 
I can relate

It is so hard for our children to bear the burdon of caring for their father or mom. It
does take alot of their kid time, but I now that i am grateful to have them willingly help
me with their dad. Just wish I could find a way for him to deal with the changes that
come. My husband is so angry, that he too doesn't see what havoc he creates with
being mean and hateful. I am praying that the answer will come. I am sorry to hear
that you aren't getting much help from family. I am currently doing everything for
my husband. I think his family would like to help, but how and when is another
story. I will keep you all in my thoughts and pray for all of us. Thanks for sharing
and caring.
Sheryl wife of scottie:)
 
Getting help

Hi:) This is my first time saying anything here--I've just read a few things. I feel like a real newbie, but compared to some of you, I'm an old-timer. My husband was diagnosed in 2002 with bulbar on-set ALS. We now have a full-time, live-in caregiver. I, too, work full-time. I also don't have the strength to take care of him (he still weighs 175lbs). He can't walk, talk or take care of himself in any way. Fortunately, I got some insurance money (early death benefit from a life insurance policy) that helps pay for this. Depending on your financial situation, some states have programs that help pay for unskilled (i.e. duties that aren't handled by a nurse) care.
Like some of the posts I read, my husband was hard to live with (and so was I) when he was first diagnosed. It was really hard on the family--we still had two teens at home then. Sadly, we did not realize that for him it was part of the disease. You see, with his type of ALS, there was cognitive impairment (dementia). He shut the family out, but tried really hard at work and at church. It took me too long to realize that it was part of the disease.
Have you read "Good Grief"? It's a little book our counselor gave us that explains the grief process. That helped me to understand what we were going through and to cope a little better.
 
Hi swi71. thanks for the tip. And thank you for joining us. How is your family coping lately? this disease takes its toll on everyone, I quess.
 
coping

Thanks for asking. It would take too long to tell you everything, but we are doing OK. My oldest son and his wife and daughter live with me, which helps with many things, but is hard on them.
I guess one of the reasons I came looking for this group is for some new help and answers. Gerald was diagnosed in summer of 2002. He did fairly well for about two years, but with ALS and FTD, I finally had to make the decision to make him quit work in 2004 (he was in a safety-related field). His employer would not lift his load and I was afraid that the pressure of his job, (plus the safety concerns), would cause the ALS to progress quickly.
Basically he still did well until about October of 2005 when he really started to go downhill. He had already lost the ability to communicate, but in about 6 months time, he also lost the ability to move on his own. A emergency room doctor in spring of 2006 told us that we could expect him to make our younger son's graduation (May 2006), but no way would he make our daughter's wedding (12/06). To make a long story short, not only did he make the graduation, he also made the wedding. Now, a year and a half later, he seems to be about the same as he was in 12/06. He does not have a PEG (his choice before he lost the ability to communicate), but still can swallow and has actually gained weight.
He is contracted and we go to the Rehabilitation Institute of Chicago tomorrow to find out about botox treatments for the contractures. I guess that's where one of my concerns right now. I haven't checked any threads on this yet, but was wondering about what to expect.
Sorry--this is long. I appreciate any help all of you can give. Seems like there are a lot of caring people on the site.
swi71
 
:confused:Hi everyone, I just joined this forum today. My husband (Alan) was diagnosed in June of 03. He progressed slowly and when it came time for full time care I tried to keep working and run home twice a day. I couldn't afford to stop working and lose our health benefits. I really got burned out quickly. My family lives 2 hours away and will come help me at the drop of a hat but I didn't want to bother them. Alan's family doesn't help us at all. He has 4 brothers and 4 sisters. I don't understand this. They should be beating down our door asking to help out. I guess they just don't know what to do. Anyway, the reason that I responded is because I know exactly what everyone here is going through. In answer to the question about what to do when it comes time for full time care, just start telling people what to do and make them understand that you can't do this on your own. I never solicited help from others and regret it. I still have problems with speaking up. Unfortunately, I ended up having a nervous break down and really lost my ability to function. My sister saved me. My husband now resides in a nursing home. It's something that I never thought we would have to do. His family still has not stepped up to help. They say they don't like to see him like this. DO THEY THINK THAT WE LIKE IT! I forgot to mention, he has lost the use of both arms, hands, legs, and feet. He can no longer speak and has a very low lung capacity. He has a lot of trouble eating. All of his food needs to be ground up to the consistency of pudding. He refused a feeding tube. He also doesn't want a trache. He chokes on his own saliva. He takes medication to dry up excessive saliva and it makes him constipated so he takes a stool softner. Now he is starting to lose his bowels. He thinks that there has to be a better place for life after death because this is HE..! I hate to say it but I'm glad that he no longer lives at home and I get to go back to just being his wife and not his full time nurse. We had to apply for medicaid in order to pay for the nursing home. We are still waiting to be approved. I guess that will probably be my next battle. So, if you find yourself so run down and just wanting it all to end, don't hesitate to use a nursing home. Or at least try respite care for 5 or 10 days. Medicare will pay for that. I know this sounds cruel, but I'm just one person and what it really takes for full time care is three or four people willing to take over every three days. If you are fortunate enough to have at least one person who can take shifts for you, try to remove yourself completely from your PAL when it's not your shift. I read somewhere that it's best to do three days on and three days off. I know this information may be overwhelming or unimaginable to some of you, but your not doing anyone good if you continue on a destructive path for your own health. I wish that I would have forced some of his family members to help take care of him. I keep thinking that they will step up and help me out in order to keep him at home. Oh I almost forgot to mention, we did solicite help through a local hospice agency. They have been wonderful and helpful. My husband starting receiving all of his medication, equipment, and home health aids to bathe him. They continued to help with services after Alan went to the nursing home. To some of you I may sound selfish, but I've got to such a breaking point that I'm ok with what ever others think about me. This disease takes such a toll on everyone who experiences it. I have got to a point that I really don't have anything positive to say and don't want to talk to people who think that they are being supportive, when all they do is sugar coat the whole experience. Sorry, but I'm still hurting and broken. Only time will heal what's wrong with me. I only look forward to this all being over and moving closer to my own loving family.
 
sschult,

Don't feel bad! Family and friends always have great advice until it happens to them!:wink:

You've done the best you can and now you need time to recover so that you can spend the rest of the time with your husband in a loving way.

thank you so much for sharing your experience with us! We need to hear from all CALS about how they cope (or don't). This is very helpful info!

Please keep us posted about your journey with your PALS!

Good Luck!
 
sschult,
You did the best thing you could have done by posting here and being honest. It takes guts to express such feelings as you did and it helps others who might be struggling with guilt and burnout when someone comes forward as you have and admits that they are glad that their PAL is no longer at home and that they wish it was all over.
I hear what you're saying about having problems speaking up because that was always me years ago. But by golly when you reach the breaking point, you learn to speak up! It's a shame it takes getting to that point.
I can't believe your PALS sisters and brothers don't help you out. Seems like people are pretty good at finding fault with the way situations are being handled until those same people find themselves in those shoes.
I'm glad hospice was so helpful. There's no way anyone would think you're being selfish.
One of these days this will all be the past and you'll have your life back together again. Hang in there. Be strong!
All the best,
Jane
 
They say they don't like to see him like this.

Hi Sschult. First of all, you did a super-human job under very difficult circumstances. Anybody who feels the need to criticize you should try doing just half of all you have done for Alan.

Second of all, that statement of theirs says an awful lot about them. I hear the same from my sisters, who don't like seeing my Mom as she is. I get so angry I almost cannot find the number of things wrong with that kind of attitude. As if they should somehow be spared the pain of life, or they only want to see their relative under the best of conditions (what happened to unconditional love?)

Anyway, it does me no good to rant. I just want you to know that if there are any selfish people in your family, you, CERTAINLY, cannot be counted among them!
Cordially, Cindy
 
Hi Sschult,
To heck with your husband's family! If they had any idea of what you've gone through, they'd zip their lips pretty damn quick! We all know exactly how you feel - there wasn't anything you've expressed that I haven't felt. My husband is very advanced, and the only help I ever receive is from my family - my dad is close but the rest are 600 miles away! We have a couple of great friends that come and help out sometimes too - but my husband's family - don't get me started! One of his step-brothers has MS, the other lives two blocks away - he hadn't seen his brother since the middle of May but graced us with his presence on Sunday. He doesn't help out though - when he found out that his brother had ALS, he tried to steal his golf cart - my son straightened that out very quick! I'm lucky in the fact that our combined insurance helps pay for nursing care 4 hrs. a day Mon-Fri and our regional health authority also funds us for an aide 4 hrs a day - every day. I don't know what my kids and I would do otherwise - I have to work!

I get the exhaustion though - I leave for work at 5:30 a.m. and don't usually get home till 5 p.m. - after that it's caring for my husband till I leave for work the next morning. My kids spell me as much as they can, but they work and go to school too. Sometimes I think I could sleep for a month! Does anyone else ever feel like you haven't the ability to make a decision? Sometimes the simplest things just stymie me! It's like my brain refuses to work - I'm usually very organized (some people call me anal :)), but lately - yikes!

Hang in there, everyone!
Beaner
 
Thank you all!

CJ, Jane, Cindy, and Beaner,
Thanks for responding so quickly. I knew that I would have great support from this forum. I wish that I had joined this forum years ago. Perhaps I could have avoided some of the bad decisions or feelings of despair. You all have made me feel like I can get through this. I tried for years to always stay positive and I now realize that I was fooling myself. I need to get real! Again, Thank you all!
Regards,
Shari
 
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