Mom FINE today! Got up at 5am and was herself again! All I need is more help and structure.

Mom up at 3am, confused, woke me up. Started in at 7am, thinking she was somewhere else and had to be picked up. I can't take much more of this, it is so draining and NO ONE is helping. I am full of despair!

Caregiver D. has been so good to us; I've learned a lot from her. Also learned that she had a cleaning gig near here on weekends! The truth always comes out!!!

Losing the Caregiver

Caregiver says the post office hired her, wow! Called Hector for another list of workers. This ordeal has turned me into a fighter!

Caregiver D. says she's "too sick" to come today. Part of her weekend trend? Mom was okay, then terrified later. I need a RELIABLE person! Lord help me please.

Relief from a Friend!

A coworker's daughter stays w/Mom all day! Yay! I feel such RELIEF! Knowing Mom was happy and cared for all day, thank God!

I go to work and Mom starts calling, crying for help. Lord help me!

Headache from yesterday. Was supposed to go car shopping w/brother in law (I thought) but that wasn't the case. Stayed with Mom all day, didn't do much!

When the Caregiver No Longer Cares for You...

I am at my wit's end!!!

Yesterday I get a phone call at work from my apt manager, saying my mom was outside and said to Martine that she didn't know where she was. He ran to James the manager who called me at work. Oh my God, another nightmare coming true!

So I go home and it's bad. This disease is not only claiming my mom, but me as well. I go to bed anxious and exhausted, but I wake up with anxiety attacks, unable to breathe, etc. I am at wit's end!

So I tell my mom all will be well, she's not going to be alone, Darlene the caregiver will be by today. "When?" she demands, "At 5 o'clock? The day's over by then!" I say I know but it's the best I can do right now. Then she asks me to take her to Alyce's, and I have to tell her I can't do that. She asks why, doesn't she want me either? Oh man. Yeah I say, something like that.

So I text the caregiver, asking if she can come early today please? She has another client that takes up a lot of her time, she says. I get this text in reply, "Oh boy there's a problem. There are no hours according to payroll, I been on the phone with them." Oh good God! When will the problems END with this woman? It's always something! And today of ALL days, she's pulling this? It took my mom nearly two months to be reapproved for Medi-Cal, during which time her in home support never stopped. She is being reassessed this week, and the social worker said until reassessment my mom has no hours however Darlene the caregiver DOES have hours to care for her, and will be paid!!!

This woman just doesn't want to work for us anymore. How coincidental that she said she wants to cut back on to working two nights a week instead of five since her other client got out of the hospital but she won't leave me hanging, then she does that very thing. Says to me "can you guarantee I'm going to get paid?" Well yes I can, it all works out, but what NERVE!

So I have to take the day off to be with my mom. Thank God for my job and my supervisor!!! I am told perhaps I can make up some hours later that I missed. Supervisor at the Banning office Lydia tells me that even though hours have ended for a client (only because reassessment is coming right up) that doesn't mean Darlene would not have been paid, they still owe her whatever she works. But she won't come out until she hears from a social worker she's going to be paid.

Bottom line is that she didn't believe ME, and took the opportunity to be with her 'other lady' who she prefers to be with anyway. I feel that Darlene knew she could be paid but chose to screw me over, not to mention my mom. After awhile I needed to lay down and just be quiet, and she called me but I didn't take it, because it would have disturbed Mom as well. It was such a bad day! Then she (Darlene) sends me this text message: "So r u angry at me now? R u home now?" You dumb broad of COURSE I am home!!! Angry? Yes and no. She said to me, "I think I've been pretty lenient here." Yeah well so have I, and you don't even know what I know.

Like the time my mom was flipping out, and she said she was "running late" and then I told her I was getting off at six pm instead of at 8pm. Mom still had no one. She sent me a text saying she didn't come by because I said I was getting off at sixpm! On my way home I drove by the rehab place where her other lady was at the time, and her car was there! So she could've stopped in on my mom, gotten PAID for that, instead of going to the rehab place that she Doesn't get paid for!

I hate to say this, but my sister was right about her. She told me that she felt she was very cunning, not to be trusted, and she didn't like how she was treating Mom. I never forgot what she said, even though I deplored the way she said it. Sigh....I am so tired.

I'm off today and Alex offered to be with Mom. It's so nice to have someone here who I trust and doesn't have issues! She's on time and seems to enjoy her. I have warned her it's a draining job, but so far she doesn't seem put off. What a great young lady she is!

So parting shot from Darlene last night (after I asked her has she not gotten paid for my mom and I don't know what else to say), via text: All I know is I shouldn't have to call to beg to be paid. My last check not the one that is lost but first of July was shorted. They took union dues out and medical prem for insurance that they took from me. And I will be talking to payroll again in am about telling what I got and did not get paid. Because they don't have a right to talk about my finances. Thank you for letting me know that.l If I had the $ I should take a lawsuit out on the county."

Me and my big mouth, telling her that payroll told me she had been paid. It's not my problem!!! She makes it out like it's OUR fault. Or that's how I feel, with all this complaining! Fact is, she's behind the 8 ball because her other lady was in the hospital for a month, and she didn't get paid for her. None of this is my mom's fault and I am so tired of it all.

Our other caregiver had zero problems getting paid!

I'm scared to death. Fell asleep watching Olympics, then awoke at 1:40am and she's sitting there on the couch, asking me if I'm her sister, saying she doesn't know where she is.

Sigh. If this is getting read by anyone, and you know someone taking care of a loved one w/a disease, please give them some support! It's so scary to be alone, and I am ALONE with this. Just the internet and the hope of someone reading this gives me a little hope of...something.

She went back to sleep and I had to creep away. I sit paralyzed in fear. I pray for a life beyond this, then I feel massive guilt of course. I wish I could speak to the lady I got on the phone once, she was going through this and her emotions were so THERE, and she knew I could sympathize. Wherever you are, God bless you.

This results in a lot of anxiety in me. I have been thinking that I should write down everything necessary for taking care of her. When I think that I'm all she has, if something were to happen to me that would be it, no one to tell her to eat or even get the food, pay the bills etc. Then I'm scared that I'm having these thoughts, does it mean something will happen to me and I'm being a little psychic? Scary scary scary.

I have one kind friend who may know about this blog, only because it's attached to my Twitter account. She was a great friend and still has the heart of the Lord that guides her. We had a falling out that I always regretted. My everyday friend I have not heard from since December, and I've already written about her. I miss her and yet am afraid to call her. Afraid she won't take or return the call.

Mom just woke up and is herself again. SIGH of relief! I cried and she said "What's going on honey? Am I losing my mind? Oh please Lord not that!" Then she said just go to sleep and not think about it. I agree Mom.

I miss you so much when you're not here. Thank you Lord for the miracle. At least I can sleep now. But I still miss my friends. Makes me wonder if I'm a gargoyle to them or something. My sister said to me "And you wonder why you have no friends" in a very sympathetic statement. Gee thanks. FAMILY...

She's been faking me out. She's learned to not say anything when she's 'not here'. I cannot even escape to my own room for five minutes w/o my name being called, then comes the rasping that takes me back to when she had asthma attacks three times a week at night, having to rush her to the hospital. It scares me and terrifies me.

Speaking w/a relative today, I laughed silently as they spoke of how now that they were having MORE trouble w/their foot, they didn't know when they'd be out. Laughing because I anticipated all of this. If it wasn't so sad it'd be funny!

It's scary to be alone and deal w/this. Trying to be brave, at least God in Heaven sees all and knows all. He has not forsaken me, and He cares about me. He is my friend, but how much easier this would be if I had SOMEONE to talk to daily. So sad to have been left by a friend. I think about calling her but I know the call won't be answered or returned, as do I want such a person as a so-called 'friend' anyway? Someone who has shown such disregard? No, I don't, but it's sad and hard to deal with.

Where do we get the strength to go on?

I wake up this morning, and she has her shoes on; sign number one. Then says to me, "Don't get up just because I'm here," as in visiting; sign number two. She goes back to her room to read the paper, says she's so glad I'm here w/her and it breaks my heart, but I try to distance myself and say "Yes! Me too; I live here." "Oh this is YOUR place?" Poor Mom, I love you so much. And I'm supposed to go to work with her like this? No way.

Usually she just has to rest some more and her mind will reset itself. That happens often. But I've been in this trench long enough to know that there is NO help out there for me, or if it is it's damn slow in coming. We spend millions on those in Haiti, why can't some of that money be spent on the elderly here at home? Because money like that has to be managed, and we all know what I think about people in management.

Well at least I have vacation starting in two days, and that will be a relief for me. I have a feeling that my mom has been acting for me sometimes, so that I won't get upset. It's just a feeling, but I'm usually right, unfortunately.

This is the time when I wish I had a friend I could call later, someone who could come over and spend some time w/her and make sure she eats and is okay. But no, there is no one. It's a lonely walk I take with Mom, and I miss her when she's 'gone' like this. Lonely and solitary. But I will be with her until the end, she is my best friend as well as the best mother someone could ask for.

Today has not begun well. Other caregivers will nod and sympathize.

Last night my mom was fine when I got home, knew where she was, etc. Then she fell asleep for a few minutes and when she woke up she had THAT look on her face and in her eyes, looking around at everything, esp. at me and I thought, "Oh no." She said she was home, right? Right mom. "And we live together?" Yes mom. "Good, I don't want to be alone. Will you stay the night? Where's the phone, I want to call my daughter..."

Sigh. She fell asleep on the couch because she wanted to, so I took the bed, I was so cold. I found she had gotten up in the middle of the night and put a light blanket on me, so sweet! Then this morning she has her shoes on, same look in her eyes. Her brain needs to be reset. Lots of times this will happen when she takes a nap, even a short one. She'll be fine again.

It's days like today that I have to remind myself of my New Year's resolution to say Yes to life, to not let this thing get me down or beat me. I have no way of fighting it. All I can do is give her the best care that I can. Try not to focus on the fact that my phone remains silent. No one calls, barely even family. My sister tends to place blame on other family members who don't call, but I pointed out to her that not even HER daughter calls to see how 'Gram' is doing.

I don't blame these people, they all have jobs and kids and husbands to take care of. (Men out there, don't frown!) Besides, I've gotten used to it. I love them and that's what's important to me. Not WHO did what, esp if it's out of guilt. That's not right.

What's been hardest to fathom is a friend who has been through this and NEVER calls or takes my calls anymore. Asked her to help several times, just to stop by and make sure Mom has had a sandwich, and she says she can't, due to her own overpowering illness. Then I call her the next day and she's out shopping at Walmart. WHAT? Even asked her on the phone to stay friends through this. I told her that going through this has been hard because she hasn't been there for me to speak to.

So I turn to the net and strangers and hopefully new friends. Not all of my old friends are like this. On a happier note, I found a diary entry from when I was seeing a grief counselor, and this same friend had not contacted me for months. Counselor said (I am SO glad I wrote this down!), "I just think it's kind of ridiculous for you to be codependent on someone who is so dysfunctional." Wow! Yes I know.

So I just fed Mom and gave her her meds and hopefully she'll have some more sleep. I have to run to the courthouse today to take care of a traffic ticket, and am afraid to bring her. Bill Gates, will you please create a caregiving agency for free? Sorry, that just came to me!

Okay here it is, just a few minutes later, and she is herself again. Bright eyed and bushy tailed Mom! I asked her, "Are you with me?" and this is our code with each other, she knows I'm asking are YOU there? So she rattles off "Yes, I'm in my home with my lovely daughter and my address is such and such." I say, "Okay, stop showing off," and we laugh. I change it up sometimes, because she might just be telling me answers she's memorized (pun intended) to keep ME calm.

That's an amazing thing about my mom. In the middle of sundowning, in the middle of dementia and old age, she seeks to comfort me. How self sacrificing is that? Thank you Lord, for giving her to me!

What I Learned By Being Offline For Eight Weeks!

Hello Everyone! I've been on the net since 1993, totally addicted. When people ask me 'what is it about computers that fascinates you' I tell them that the Internet is like a big electronic book, and it just goes on and on.

So when my laptop was given a death certificate by my computer guys, I took my time. I had out of state family visiting to help me with my mom, who has dementia and also had suffered a fall. More on that later. I finally decided on a desktop, as I never really took the laptop anywhere. I am now considered modern and up to date, with much faster equipment and a faster connection. Yay!

So my usual routine was to come home, eat, spend time with family, then hit the Internet. I'd open up my chat room for background noise and surf away, checking emails in several accounts, looking at celebrity gossip and also looking for online support groups for dementia. I didn't really find any.

Not being on a computer gave me a lot of free time to think about other things. They don't call it the 'web' for nothing, you really DO get drawn in. Log on to do an email and pay a bill and the next thing you know you're running late for work! I used my cell phone to check my email. It was frustrating to see that people had sent e-cards or pictures, but I knew I'd be seeing them soon.

I guess the most important thing that I learned is that I could live my life (such as it is) without being on a computer 24/7 and still function. I spent time with people, began journaling again, watched more television and spent time with Mom. Saw "Julie/Julia", which made my mind say hey, what are you waiting for? Who cares about privacy anyway, just blog!

Right now I just finished watching "The Notebook" and I am tired. I will go into my mom's condition later. I want to use the net to offer help to others who have to care for their loved ones as I do, with very little help. It's a scary thing being alone, but I have gone through the dark tunnel of beginning to deal with dementia and have come out the other side with the light upon my face, more positive, knowing that even though there is no cure for this, I will survive it and be okay. Believe me, there have been times that I felt my own life was over...