...but I haven't actually done anything concrete yet like starting the paperwork, etc.

In the past couple of months not only Mom's doc, but her neurologist and the nurses over at ADC have suggested that I start finding a placement for Mom so to get her acclimated before she starts sliding further. Right now she's on yet another plateau -- she's been a "14" (late middle stage/early late stage) on the ALZ scale for awhile now -- and is beginning to have toileting, as well as not-knowing-what-she's-seeing issues. Neither are constant right now, but as we all know, it's only the beginning.

Ack, I'm having so many mixed feelings about this it isn't funny. It's also affecting my husband more so than either of us would've thought. So far we've looked at three facilities, one being a no-go (state-run place, 4 to a room, everyone squished in an old building like sardines in a can); one that's so far #1 on the list (combination private/public pay owned by a national ethnic-centered organization of which bespeaks Mom's heritage); and one owned by the corporation that runs the ADC in which Mom's wouldn't be on a waiting list. This last one also has a separate dementia facility about 15 miles south of where I work which is supposedly very nice and cozy, but the distance...ack...

Mom doesn't know any of this, of course. Because she's on Medicaid, I've got to follow the protocol to get her into any of them (hospitalization for 3 days so that Medicare kicks in, then a transfer to said facility, yadda-yadda). I'm getting sick to my stomach just thinking of all the paperwork I've got to gather. Ack. The house will be in jeopardy when she moves because the "caretaker clause" is viable only for a set period of time. We can't afford to move anywhere, never mind trying to upkeep the house as it is now.

There's the bigger questions, of course: When should we move her? I have to start the paperwork at least a month in advance. Why are we moving her? It's not that she's wandering or hallucinating or keeping us up all night because that's not the case. It's selfish, really. I cannot continue to maintain my work schedule and hubby cannot continue working sporadically. We have no respite except when she's at ADC, and even then that's not enough. Weekends are hell around here, especially for hubby, because he has to keep her entertained for the 10+ hours I'm at work. And after that kind of schedule, I'm in no shape to take over once I return home. We're both falling apart individually and as a couple. It has to stop before either or both of us snaps because, if that happens, neither of us will be good to anybody, especially Mom.

Well, somebody may ask, why don't we hire somebody to look after her? Medicaid will pay for it! Ah, but there's the question of what if the agency can't find anybody? That's what's happening now. They can't even find a housekeeper for the hours she's allowed to have one. If she needed an aide that'd be one thing, but she doesn't because we're here. I can't bitch and scream on the phone to her caseworker because I'm never around. Hubby can't because he's not her proxy.

I don't know...at this point I'm not sure what to do or what's going on. I know that, in the long run, having her in a safe and secure place would be the best thing. But she's not ready for a NH! She doesn't have any chronic issues, she still walks and talks, she's still reasonably "with it" a lot of the time. I'm afraid that if I do put her somewhere she'll swiftly deteriorate long before she's ready to. Besides, she's my <i>mother</i>. She's the only direct living relative I have. That's scary.

Can I crawl under a rock somewhere?

I wish those who were not caregivers would fully understand the total picture.When our loved ones become afflicted with an illness, no one is a winner.So many choices to make for various reasons.We have a battle between our hearts and what is best for all concerned.What ever choices you make , never look back and second guess your self.Toss the words should and guilt out of your vocabulary.

Hey Em! I know how you feel here...exactly how you feel. I have my own fears here as to what to do in the event we need to make this decision in regards to work, home life MIL ect. Heck I havent worked since before my mom passed so we are up that proverbial creek without a paddle and now that I am "jailed" sorta speak here I cant even go to school like I was suppose to so I would have added income when the inevitable happens.
What I am trying to say here is that you are doing what is right for the health and welfare of your family theres nothing wrong with that. Its hard to let someone else take over care of Mom but do you think for one moment she wouldnt support your decision that you are making now if she understood all the repercussions that her care has caused you and your hunny here? I dont think so. Get the paperwork in order without guilt here sweetie you know dang well mom wouldnt want you suffering....

quote:

Originally posted by embersmom:

Evidently I come across as a "Nervous Nellie" because the paralegal asked me, "This is the first time you've ever done this, isn't it?"

I feel sick to my stomach all of a sudden. Like I said, in the long run I know it'd be best for her. And considering I'm ready to self-destruct, it's a good thing I'm being proactive about it

Ok what planet is this paralegal from? I can't think of many people who actually are "experienced" when faced with dealing with things like. Unless your in the legal or medical field.

I'm glad you're taking a proactive approach to this-it shows true love & caring for your Mom.

Hang in there em!

Thanks, Lisa *hugging back*

Right now I'm waiting for callbacks from both the caseworker and and another place I haven't looked at yet. Just left a message with the elder attorney because I don't know if she needs to speak with me. Evidently I come across as a "Nervous Nellie" because the paralegal asked me, "This is the first time you've ever done this, isn't it?"

I'm not going to move her just yet. I'm figuring that if I need to start 30 days prior, it can wait until after the holidays, barring any unforseen complications. In other words, "Ma, hang in there!"

I feel sick to my stomach all of a sudden. Like I said, in the long run I know it'd be best for her. And considering I'm ready to self-destruct, it's a good thing I'm being proactive about it

Em *BIG HUGS* to you. These decisions are never easy. I was exactly where you are a few months ago and had no choice but to place Mom.

Caring for Mom was affecting my & hubby's sleep and she needed someone 24/7 because of her "fear of being alone" and assistance w/other things. It also affected my 3 kids.

Mom never wanted to go to a NH and the decision to place her was rattled w/guilt but I knew in my heart that I wasn't superwoman. I couldn't continue to care for Mom without it affecting my health and it was destroying my family too.

You can still be actively involved w/her care in a NH, you just will have a different role. For me, I found that there were a lot more options to care for Mom and because I wasn't exhausted & stressed out could make better decisions for Mom's care.

For me it was a matter of "self preservation" and if something happened to me who would look after Mom & my kids.

It sounds to me you have put lots of thought and care into this. There is nothing wrong with getting all the paperwork done before you hit "crisis mode" and it doesn't mean you don't care for your Mom. It means you love her with all your heart and want the best care possible for her(even if that means placing her in NH)

Know that I am here if you need a "shoulder"