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biskethed

New member
Joined
Aug 21, 2009
Messages
9
Diagnosis
07/2009
Country
US
State
Mi
City
Adrian
I'm angry and there isnt anywhere to direct it to. My wife Dx 7-09 is in the final stages. She began showing symptoms in January. She cant move anything, can't talk, refuses her PEG feeding, is dehydrating, and her extremities are turning blue. She still tries to talk continuously then cries for hours because we cant understand her. She insists on getting into and out of bed every 20 minutes so we can hold a smoke for her even though she can't draw on it, and cries because she can't smoke. Why in the hell is there a disease like this with no treatment let alone cure. I want to smash things, and destroy stuff, i feel so damn useless. Our anniversary was 8/26, and i wandered around stores for 3 hours crying because buying her anything seemed so futile. ( wound up with flowers which she loved and a card i couldn't read because it made me cry like a baby) Now i am running into having to pay for full time in home care that costs as much as I earn, so my chouce is to quit my job and my kids starve to take care of her, or pay caregivers so my kids can starve and work my ass off..... DAMMIT!
sorry about the cussing.
 
so sorry you and family have to go Thur this , i understand your anger and frustration....it is OK to let it out here , i wish i could make it better but , we can't but , know you are not alone , some one will be along with a few suggestion's to try to help you on something to try to get her to go back peg feeding's sounds like she is very depressed and maybe even given up , there are meds that can help that with depression and maybe a social als worker can talk to her. to me their is nothing worse than feeling helpless to fix thing's so i feel for you my son was diagnosed-in 7-09 also i know exactly how you feel ....we can't beat the als but we can try to make the best of it for her .hold on and know my thoughts are with you
 
Biskethed, my heart goes out to you and your wife, rant and rave a such as you like and know that you are in are thoughts and prayers.The card that you gave her for your anniversary was a very special thing for you both,the feel of a loved ones hand when I am feeling low always helps and I am am sure you will get some suggestions from this forum. Hang in there and blow off steam antime.
 
Hi biskethead,
I'm wacked. If we're not all on the same page, we're damned close. I have had to remind myself repeatedly (over and over again) that my hubanero's independence is important to him. This is his journey and it's my job to assist him as best I can, making sure he has the best care available, and love him every step of the way.
 
You say she is in the final stages. Have you contacted Hospice? They were a godsend to my family. The nurse came at least once a week, an aide came once a week and washed her hair. They have volunteers that can sit with your wife and give you a respite for a few hours. Just a thought.




I'm angry and there isnt anywhere to direct it to. My wife Dx 7-09 is in the final stages. She began showing symptoms in January. She cant move anything, can't talk, refuses her PEG feeding, is dehydrating, and her extremities are turning blue. She still tries to talk continuously then cries for hours because we cant understand her. She insists on getting into and out of bed every 20 minutes so we can hold a smoke for her even though she can't draw on it, and cries because she can't smoke. Why in the hell is there a disease like this with no treatment let alone cure. I want to smash things, and destroy stuff, i feel so damn useless. Our anniversary was 8/26, and i wandered around stores for 3 hours crying because buying her anything seemed so futile. ( wound up with flowers which she loved and a card i couldn't read because it made me cry like a baby) Now i am running into having to pay for full time in home care that costs as much as I earn, so my chouce is to quit my job and my kids starve to take care of her, or pay caregivers so my kids can starve and work my ass off..... DAMMIT!
sorry about the cussing.
 
biskithed,

I'm very sorry you and your family are going through this. i agree with kylisa, call Hospice! Get with your ALS clinic and find out who they recommend. Talk to the social worker at the clinic. She/he may have some helpful suggestions.

This disease affects caregivers too! You must take care of yourself and your children as well. You may need a little help and by that I mean anti-depressants.

I hope you are able to get the help you all deserve. Bless you for taking such good care of her. but please take care of yourself too!
 
hey biskithed,
liked wacked, we are awful close. we do have home health aide help so i can work to do stupid stuff like pay for the house and take care of the kids (although i had to tell one he had to live with crooked teeth for at least a while - no way in heck we can get braces). our biggest problem is the HHA reliability - Monday they didn't show and I didn't know about it. Came home to let's just say a "big mess".... I just sat there and cried. Not only have my children (10 and 7) "lost" their dad, but now they've "lost" their mom too. Some days I just don't know how much longer I can do this. Neuro and social workers oversimplify the situation - they have great "answers" for everything - until I point out the flaws in their simplicity. Christmas is coming and I am so depressed over that. I keep trying to smile for the kids, but find that smiling actually hurts my face since I haven't done it so long. I know I sound sad, but I am even more angry. When I realize I can't vent my anger, I become even sadder. It's appearing to be a downward spiral. Somehow we've all got to just hang in there. One step, one day at a time. It's about the only thing we can do. and pray.
 
mytwoboys, I hear your sadness, things will work out somehow I am sure, your pals is so fortunate to have you. The boys Mom is still around ,this won't go on forever but you need to take care of yourself. Have you seen a Dr. for yourself lately, maybe he/she can give you something to help the anxiety. Peace be with you.
 
thanks blackpool. today is just a "down" day - a little more down than usual. i remind myself how lucky i am to have an extremely generous employer - his next-door-neighbor succumbed to als 3 years ago - same kind of situation - 40-something, 2 small kids.... he monitors my workload carefully always asking if i have too much on my work plate. he knows almost first-hand what i am going through. i remind myself constantly to just fix what i can right now or what's most urgent - then tackle the rest. neuro is trying to hook me up with some counseling - i'm just afraid they will have "simple" answers for very complex problems and end up being no help - and time mis-spent with them is too much of a precious commodity right now.

i'll keep hanging in there. my heart breaks for those who have it even worse than me.
 
I think that we are all so busy focusing on the PALS that we need to remind ourselves that this is truly a FAMILY DISEASE! I think that we are entitled to having some bad days and some ranting about how totally crappy this is for all of us. I hear you about the "mis-spent time and the simple answers for complex problems". There is nothing wrong with venting here. At least we understand :]
 
I'm sorry your wife has gone downhill so fast. Aren't we supposed to have 3 to 5 years? My husband was diagnosed 7/09 and he seems to be going downhill and it is so scary, not knowing what or when something else is going to go. He lost his speech in 2/09, also swallowing ability during the summer, had a PEG tube installed 10/05 and I am getting good at feeding. Lately he picked up a bad head cold so coughs, moans and looks bad. Today his neck hurts and wonder if this is part of the disease or result of the cold. It is hard to be brave and I too feel like ranting and raving that this disease could happen to my husband. I know other good people in town who have died of this crappy ALS, which happens to be my initials. We have a home health nurse who checks in three times a week and thankfully Medicare covers this. For you who are too young for this I really feel sorry since you are paying out of pocket for any help. A suggestion is to join the MD (Muscular Distrophy Society) as they will help pay for wheelchairs, leg splints, etc. after insurance pays, $2,000. Try taking something for depression. We caregivers have to take care of ourselves. You have your children to take care of too. Don't you have relatives or friends who will help? Your church, if you have one, should help you too.

Hang in there and try to be strong. Almasch
 
Regarding progression rates and the whole 2-5 year thing, not something you can depend on. There are some rare variants of ALS that progress very quickly while others do so very slowly. How fast the disease progresses in a given body is anyone's guess.

People are usually 20%-50% into the disease by the time a diagnosis is reached. This is sad but true.

The disease is also a huge money pit. If you have a life insurance policy, take it out and read through it. My policy has an accelerated death benefit rider that allows me to make a claim in the case of terminal illness and draw up to 40% of the face amount before I die to cover living expenses. Life insurance is meant as income replacement if the bread winner should die. In the case of ALS, because it is labeled as a debilitating, terminal illness, some insurance companies recognize this and allow the insured the early draw on the face amount of the policy.

The best advice I can give you is take your policies out and read them carefully.

Zaphoon (former licensed life insurance agent)
 
She is wobbling into and out of a comatose state. She was unresponsive for about 6 hrs yesterday, and then last night for another 3 or 4 hrs. Still breathing but thats about it. I am so sad for her. We have hospice nurses that come every day and administer her noontime meds as the aides aren't allowed to. The local ALS association pays for 1 hr a day of in home care, and I pay for the other 8, we've already lost our house, and her car was repo'd. I guess stuff happens, but this shouldn't be happening to her...
 
biskithed,
this shouldn't be happening to any of us. my heart is breaking for you and your kids. i am crying for you as a write this. please know that so many of us do understand; we do care; we are in the same place too. my kids are so worried about "what's going to happen to our family" - i tell them we will continue to be a family no matter what or where. i tell them i love them a dozen times a day. i don't worry about me anymore, just them. i look at my husband who was very athletic and a dirtbiker - reduced to a body that can barely function. my heart breaks for us too. my grandmother lost her husband at age 35 in 1941- she was an immigrant with 3 small children and spoke very very little english. somehow she prevailed. i guess we will too, we just don't know how. stay strong.
 
Biskithead, So sorry to here about your wife I havn't given any input on the forum latley but hope to get more involved. My son who is 22 also started showing signs of ALS around Dec. or Jan. We went to the Cleveland Clinc yestertday & received confirmation that his first neuro. diagnosed was correct ALS. This disease is a thief who keeps returning to steal. Somtimes just a little other times all it can take. I have worked as care giver in some aspect most of my adult life I've helped adults & children w/ many different disabilties & diseases but I have never felt as helpless as I do now. Take each day for all it is worth. I look back on memories alot, on the way home from the clinic yesterday I was thinking back to when he was baby & somthing funny he had done & I couldn't help but laugh out loud. God Bless & Hang in There
 
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