Need to vent

[Just J]

I'm sorry to use this format like this but I feel I am at a breaking point. PLS has ruined our lives! My husband and I were once very active and very happy. Now every day seems so much a struggle. I work outside the home and he is left to take care of himself throughout the week. He is not at a point of needing someone there all day but little things like "blowing a fuse" or the cat throwing up becomes a BIG problem b/c he can not get to the fuse box which is in the basement or get down on the floor to clean up after the cat. We are an hour away from close friends and family so there is no one that can step in when I am at work. When I am not at work nearly 100% of my time is focused on him. Making sure he is comfortable and meals are prepared so that he has ready made food on days that I am working or running errands. I don't talk to anyone about this because I don't want to burden people. I am only in my early 40s and just can not believe how our lives have been turned upside down. I don't think about the future anymore because my dreams are shattered. I just take one day at a time. I know I should talk to a therapist but I just havn't done it yet.

 

[crystalkk]

You can vent anytime, Do you have a neighbor that is home during the day, that when he needs help with these little things he can call.
Sometimes people don't know what to do, if you ask and instead of thinking you are burdening them (I am the same way), they are more then happy to help if a situation arises.

 

[laurel]

It is really important for you to get someone professional to talk with. My best friend's husband had a stroke 3 years ago at age 42. He is a police officer and she is a nurse. He is severely disabled and stays at home. My friend works long hours and is on the phone repeatedly to him during the day over things such as you mention--with them it is feeding the dog or trying to walk the dog etc. She is a bubbling pot of rage as she too says their lives have been ruined. I have tried many times to get her to see someone without success. I have watched my friend go from the nicest , most sensible, caring person to a shrew with her husband. He is very depressed--because of the stroke, but more so by watching his wife come unraveled. He tells me she makes him feel a burden with all the phone calls and her anger which she is now directing at him. Both very lovely people, but their lives are hell in some part due to their own unwillingness to seek some counselling. I try to be a sounding board for both, but it just isn't enough. I try to be very gentle, let them vent, and point out very subtly the blessings that they do have, but I heard the broken record from my friend "our lives are ruined, I never thought we would wind up like this". It breaks my heart to even visit them due to horrible atmosphere there. She thinks because she is a nurse (working in mental health by the way) that she knows all the answers. She likely does, but she cannot understand what a difference it would make to get some professional help. I am not trying to minimize the devastating impact on your lives or theirs, but peace and understanding and acceptance can happen and you can have a good life still. Please jump in here Joel, and explain your acceptance and the good life you live.
Laurel

 

[joelc]

Yes, your lives have been turned upside down, but there is nothing you can do to change this so try to make the best of it.
Sorry to come on this way - I do sincerely sympathize with what is happening.

But the one thing I have learned is that being mad, bitter, frustrated, etc. does not help - it actually makes things worse and robs a person of the time you have left with your loved one.

Unfortunately there is no cure for what we have, I have ALS, am in a wheelchair, have a feeding tube and a trache and vent. I cannot use my hands so use a headmouse with my computer.
LIFE is GREAT!

I decided early on that since there was nothing I could do about this disease I was not going to let it ruin the time I had left. I enjoying each day and don't worry about tomorrow. I am thankfull for the things I can still do and don't focus on what I have lost. I choose to be happy and have my family happy, I don't want them to always be sad and wish I was dead.

We have adapted to life with this disease and it does not stop us from doing what we want to do, we go out, go shopping, go out and visit, go out for dinner, etc. I am enjoying our grandchildren and am still involved with our kids giving advice etc. Life can go on and be very fulfilling, it does not have to be doom and gloom.

I am not trying to be preachy, just trying to explain how we have dealt with this.

I hope you can get the help you need and come to peace with this. Life still can be good.

 

[BethU]

Just J ... I really sympathize with the load you're carrying and how radically your life (and your husband's !) has changed. You said ...

I don't think about the future anymore because my dreams are shattered. I just take one day at a time. I know I should talk to a therapist but I just havn't done it yet.

I think that's the key to coping with it all ... we all have to learn to be "in the moment" with these diseases, and just deal with today. Sometimes, just deal with this minute. I know I miss my "before ALS" state when I would dream about new cars I wanted to buy, or projects way down the road. Now, looking back, it feels like I lived my whole live in the future, not in the present.

It would help a lot, I think, if you could talk to someone for support ... a therapist, a pastor, someone. I think there is a special cloud in heaven for our caregivers. Remember ... you need as much support as your husband does. Nobody can carry this kind of load alone.

Take care and hang in there.

 

[Geo]

Frustrated Just J

OOOOOOK ,lets start from the beginning . When Hubby was not in disease ,what did he do ? was he a husband that couldnt fix things ? Does he use a cane to get around ? Does he have PLS ? or ALS ? What kind of movements can he do ? Is his balance impaired ? are you in a home that has 2 stories ? basement ? Does he have a friend that can check on him when you go to work ? Maybe time to go to a single story home
Im home alone when my wife is at work ,i have PLS ,i use a quad cane , my balance is 50-60 % of what it was predisease . I can run a vaccum ,if i stand and just extend my arm out then move and do again , I personaly know guys who are healthy who dont or wont do what i do .

For one they get critisized for all they do ,so they do nothing ,a little encouragement goes along ways . Geo

 

[hopingforthebest]

sorry!

Dear Just J:

I too leave my husband 3 full days a week when I go to work. For financial reasons, I need to work, too young for SS for myself and didn't expect my husband to get sick and have to stop working at 58 years old. It's tough.

Hopefully, Guardian angel Stu, will find you some help and maybe you could get your husband signed on to Hospice for the care issues. It has been a blessing for "me" this past year. An aid comes daily 7 days a week and it is covered by Medicare since Hospice care is covered 100% by Medicare. Strictly for the care issues.

Reach out to your local congressman's office if you are having any difficulty getting him on board with SS or Medicare etc.

Some days are really hard and I have to focus on the good and that is having my husband. We don't have that crazy social life that we once had, we have stay at home weekends, rent movies and remenis about the "good old days" (36 years married) and we try and laugh alot. (he actually just fell out of his bed, as his bipap hose came loose and I didn't hear him as I closed his door. yikes! no broken bones, thank God, and we laughed. we agreed not to close the door anymore)

Anyway, it is easy to say, "hang in there" but talk to yourself when you are driving in the car. Pray! Call a friend and cry together.
Don't stop posting on the forum. We are all in the same boat and are here to help, lift one another and just sometimes complain when need be.

Will be praying for you, " Just J", tonight!

Patty

 

[Kevinski]

hi there

I understand how your feeling pulled from all sides ,i have als ,but do not need care yet its coming though ,unfortunately my wife has to work .Is there an als soceity where you can possibly get some help.And for your own well being and sanity you have to come to the realization you just cannot do it all.I talk via emails to a lot of Pals and people with this disease ,but not really in this forum if you ever want to xchange ideas my email is [email protected] Hang in there and please dont hesitate to drop me a line ,we are all in this together,You can talk to Al he knows me ,just so you know i am not some kook..kevin O'Keefe ,Calgary Alberta Canada

 

[Just J]

Thank you everyone for your kind words and support. Yes, I was having a frustrating day and of couse "venting" however I do for the most part remain positive and supportive. I am mostly very kind and patient with my husband and will go the moon for him if necessary.

Just a litle history, Mike was very active prior to disorder. Golfed 3 days a week, worked out 5 days a week had played tennis regularly on AAA circuit. Helped a lot around the house (did all the laundry). We enjoyed traveling and just enjoying each other's company.

Now, he doesn't like to go anywhere (think's it too much a hassle). I try so hard to get him to do things because he hasn't come to terms with his situation, though not depressed, just withdrawn a lot from life. He's too stubborn and I can not make him do things he just doesn't want to do. So sometimes he sits at home while I visit friends or family and of course then I feel bad (he doesn't make me feel bad I just feel that I should be with him when I am not at work). I get friends and family to our house as much as possible to give him a boost.

 

[Ontario caregiver]

surviving ALS the caregiver

My husband got ALS at 45 but probably had it sooner when I look back at our life (he had it for 10 years plus) . Caregiving is a long hard road, Gary just died in Feb/09 and I worked full-time then part-time for 2 years and then crashed as I could not where all the hats. You need HELP, homecare, nieghbour, friends, your husband old co-workers. I hope you are not going though or your husband is going with ,you can do it, because you can but only for a while, so accept any help that is offered, even if it is 1 hour a week to sit whith your husband so you can have some down time JUST FOR YOU.
I ended up on short tern Ins. and then longterm insurance I had a good doctor, and a good act, so I could be with him to the end I was on Ins for about 4 years.
This is my band-wagon beef as the Govt does not help caregivers enough. Hopefully you can get hooked up too some kind of Homecare/personal care as your husband deserves care and you need it so you do not have to worry about him when you are at work.
Good Luck and this is a great place to vent, I vented many times when things did not go well for us, All the best, and do not wait too long for help to come to your home

 

[GlenBrittle]

This place is a great place to vent , the people are warm and friendly. You have to have somewhere to cheer you up. Bring a smile to your face.

Like tonight , I vented.

Yep , just lifted that leg and .....

Now I am searching for the air freshener.

Stinky