I feel like i'm losing my life

[Loverly]

i'm having a very very bad day. My 47th birthday is coming up and i feel so hopeless.

I've got two sick parents and a kid going off to college in the fall. I never ever thought I'd be one of those inbetween caregivers.

my siblings are absolutely not useful, and my stepmother's own son hardly shows up. but they will all be crying at the funeral while i'm in the kitchen cleaning up.

i feel so bitter and angry. it's consuming me.

jen

 

[affected]

Jen, what a difficult situation!

I'm sorry but I'm not sure is it your father who has ALS?

Are you helping with the caregiving? Let it out girl xx

 

[Nuts]

Jen, I'm glad you've opened up here. I had my husband with ALS and mom with Parkinson's for a year before realizing that I could not safely care for them both by myself. Thank heavens my sister was able to take care of mom. Oh, and we experienced what you describe at my stepfather's funeral. His son took over and carried on as if he was heartbroken--the son who refused to come help when his father needed it most and allowed him to die alone. I was caring for mom who was still very fragile healing from a broken hip and exhaustion, but my sister said she had to bit her tongue through the service.

Yes, you have a right to feel overwhelmed and angry. Bitterness, however, is only going to eat you up. I hope that venting here helps---we're happy to listen.

Can you get any help with your parents? Do you have home health aids to assist with your parents daily needs?

I'm in North Carolina now, but I grew up in Santa Ana and Orange, CA. I do love the weaher there.

Becky

 

[skipper66]

Sorry you are going through all this crap. Wish I had some advice to give you. Have you perhaps tried to have a heart to heart talk with your sibling and all and everyone and tell them they need to move up to the plate and help. This is too much for you to take on all by yourself especially if your caring for two parents. Do you have a spouse who can help you out a little by chance? Can you get a aid to assist a little.
Please feel free to vent on here whenever you want. You have a right to feel angry and overwhelmed. This stuff really sucks. Truly wish I could do something to help you. Hugs, Kim

 

[Loverly]

Thanks everyone. I just have to say it sometimes., you know? It feels so selfish to vent and that just compounds the anger, i think.

My stepmother, kathy, has ALS (bulbar). She's got a feeding tube, bi bap, suction, and so on. SHe also has a DPS administered by the clinic at Cedars. She's starting to lose strength in arms and legs now. She's got an AFO on one leg and recently she's started to have that "lean" that people with ALS have when they can''t lift their heads all the way.

My father has had two cancers and the treatments have left him incontinent, with peripheral neuropathy, failing kidneys and a bad attitude.

We all live together, and I don't know how I'd handle things if i lived somewhere else. I have applied to be paid as a caregiver, but the amount of paperwork we have to finish is just one more thing on the pile of things.

Just one errant bill from a med supply company had me on the phone for hours last week.

As far as the family is concerned. None of them can find the time, but I know that I would make the time. That's the worst feeling of all. They can't help because they are so busy, but what am I? I work full time. I have a child. What the heck?

I'm taking the weekend off and heading to San Diego. I hope that I can recharge there.

jen

 

[skipper66]

I hope the weekend goes well for you Jen. I've only been to San Diego once. I loved the zoo there! Hang in there, Kim

 

[affected]

Jen, my Chris's kids would visit rarely and when they did we would have to listen to how tired they are and how hard they've been working .... sigh

That's great you are having a weekend off! Have you paid someone to look after your parents so you can have some respite?

 

[gooseberry]

If you have a local ALS association they offer respite grants. I would use them. Also, some health insurance plans offer it as well...some call it enhanced hospice. It may be worth making some calls or sending email.

 

[Nuts]

No, it's not selfish to vent. It's healthy. We all do it.

Tillie makes great suggestions. You need help. What resources have you tapped?

Enjoy San Diego! What a beautiful city.

 

[gooseberry]

Loverly, I am 47 too. Some days I get in the "Life wasn't supposed to be like this mode". But then I think, I have had planning time, we have been able to say important meaningful things to each other, and the family that has chosen to not come around are the ones missing out. Is it harder on me at times, yes but I am pretty good at finding resources and asking for help. You and your child have to survive this healthy and whole. It is so important. Do your best and don't beat yourself up.

 

[Barbie]

you have gotten a lot of great advice! just be kind to your self and know that you are doing good. just let the anger for those other people roll off your back--it will only hurt you not them.

 

[GilWest]

i'm having a very very bad day. My 47th birthday is coming up and i feel so hopeless.

I've got two sick parents and a kid going off to college in the fall. I never ever thought I'd be one of those inbetween caregivers.

my siblings are absolutely not useful, and my stepmother's own son hardly shows up. but they will all be crying at the funeral while i'm in the kitchen cleaning up.

i feel so bitter and angry. it's consuming me.

jen

I plan on saying a mouthful at mom's service..not sure why anyone would come. Nobody sure as heck has bothered to stop by why she is alive...

 

[MaxEidswick]

>just let the anger for those other people roll off your back--it will only hurt you not them.

Ditto that!

 

[Loverly]

I was sick all weekend, so I spent the weekend on the couch. Sleep was sketchy as my BF woke me up numerous times due to my snoring!

I'm feeling the despair today. The absence of hope is crushing.

 

[affected]

How did your weekend away go? Did you get some rest and do some nice things to treat yourself? Who look after your parents while you were away? I hope that this can become something regular, maybe you can get away for a full weekend a month or something?

Gosh I'm full of questions in this reply but sometimes it's the one way I can work what to say that might help is to find out a little more about you

Are you seeing a counsellor and taking any antidepressants?

I wouldn't have made it as a CALS without all the supports I could get including counselling, meds and talking here. {hugs}