Exasperated, tired, scared!

[AlabamaGal]

I love my husband. I love him so much. I hate ALS and what it has stolen from him, from us, from our family. In two year, he has gone from being active to not being able to walk, struggling to talk, choking, and he is showing signs of FTD. I injured my back within the first year of caregiving and now both shoulders are burning in 24-hour pain. May have rotator cuff tears in both. I have no insurance. OMG! So exasperated. So tired. So scared. I don't know what to do. This horrible monster of a disease is killing both of us. We are only 50. :-(

 

[notme]

I'm so sorry you are struggling so much. Is there any chance of getting the possible FTD evaluated? Are their places there that can help with medical care for you? Don't know about your state, but we have a lot of sliding scale places here.

Is there a loaner closet that can perhaps get you a hoyer lift if he's unable to stand?

I know there is no cure for FTD, but are there meds that can help with the symptoms. I wish there was somethingng I could offer by way of help.

I know in some areas a wife can be paid to be a caregiver. Is that an option at all? My thoughts and prayer are with you.

 

[rachelg]

I am so sorry things are so hard. I hope you are not managing everything on your own and that you are having some help in.

Thinking of you.

 

[cervus]

Don't be afraid to ask for help. You both need somebody and some equipment to help you emotionally and physically. Try to get hold of some loaner equipment. Thinking of you.

 

[HelenL]

I'm thankful every day that I live in a state with state-mandated health insurance... or I wouldn't have any either. My biggest fear (besides ALS that is)...

Wish I could help you, have you received help from MDA or ALSA? ALS Clinic, Loaner closets, etc? Does your state have any assistance programs for disabled folks? I'm sure you've tried all this, just wishing that there was something I could do... thinking of you.

 

[brooksea]

I'm very sorry and have been in your shoes! I wish I could offer some advice. Just know we care.

 

[vzandt]

I'm sorry Alabamagal. I cant argue with you. You are right. It sucks.

 

[brooksea]

Do you have any outside support at all? I hate ALS!

 

[joni51]

Alabama girl, check loaner closets, and see if he can be tested, he is on medicare right? lynn sanderson is the Als lady you need to talk to as far as equipment. If you want her # Pm me.So sorry too!

 

[KrisS]

AlabamaGal, I wish I could say something that would ease your pain, fear or sadness. Our life is similar to yours. My husband is 51 and I am 49. I feel so similar to you so much of the time. I hope your husband is at least on medicare. Have you looked into medicaid? If you can qualify, it could help a lot with medical bills. We have several pieces of equiptment from the MDA and ALS association. Both organizations are so helpful. I feel your pain. Kris

 

[mysisterskeeper]

here in the U.S. ALS is an automatic qualifier for medicaid. You have to meet income requirements or have a copay and there is the waiver program to help pay for nursing. I don't know how soon hospice can come in, but as soon as they can it helps. Hospice does not mean death it means help. Is it that way in the UK? Link up with the ALS association you can get loaner equipment.

 

[August]

Do you have any outside support at all? I hate ALS!

Hi, I'm not entirely sure what to say other than I saw you've been at this for a while and was drawn in hoping for wisdom. My dad has ALS. He seems to be declining faster and faster. Not even a year ago everything was normal. Today, he basically needs help with everything. He can walk maybe 10-15 steps still, but I'm afraid that won't be long. He's on his breathing machine 24/7. He is so weak. Hunched over. His hugs aren't the same. His voice isn't the same. His hands are mushy instead of the big strong hands I've known my whole life. I'm turning 30 next month. It still sounds "old enough" when I say it out loud, but I feel like a baby. I'm just not wise enough, strong enough....I need my daddy. I'm just so sad...there is no other word for it. Most days this does not feel like my life. It's surreal. I'm just going to work everyday, going home everyday, eating, sleeping, paying bills...what the hell! It pisses me off the time marches on. I'm mad that the world will go on as it always has even though this great man can not. I just really feel I need him. And my poor mom. If I feel this way, I can't imagine what she is feeling. I'm afraid of what's around the corner.

 

[AlabamaGal]

Thanks everyone. He is on SS and Medicare and the ALS Assn has been wonderful to us. We just don't go to clinics anymore; it is too tiring and expensive for us. Hospice has been good for us the last 9 months. They have provided the cough assist, hoyer lift, bipap, hospital bed and an aide to help bathe. It is still so flippin' hard. I feel like a wimp.

 

[panguinjen]

You are NOT a wimp! You are saying what we all feel...ALS sucks... You are tired, burned out and there is no good outcome.... Hang in there, vent, rant and rave to us....

Jen

 

[momap53]

I second what Jen said! You're not a wimp, you are doing everything that you can!
Having the disease in hubby's family as well is contributing to your stress.
Rest when you can. It's never easy.