Home at last

So the hospital case manager found a doctor that will take mom to manage the cumadin out of the hospital yeah! So she got to come home yesterday.

She was pretty tired, went to bed early and slept till I made her get up for lunch at Noon.

In the mean time me and and the youngest cleaned house...really cleaned. The kind of cleaning you cant do when you are gone all day.

We found out that my aunt in Alabama fell. Shes my mom's older sister, and is where mom stays when we travel back home. She hurt her knee pretty badly, so she cant help me with mom. So we dont get to go home for Thanksgiving. We always go home for Thanksgiving. Oh well. Not this year.

Still here...

I think I know all the 2E staff now. Mom cant go home until they figure out away to keep her cumidin levels regulated. That means they have to find a doctor/clinic to be willing to take her to do the management of it, with her having no insurance. So far, no luck.

But since PT is finished with her, she won't need home health at least. Thats good.

Being here made me realize she probably doesnt need to be alone at all anymore. She was attending the clubhouse program at the mental health center from 9-3 but alone after that till we get home from work. so I checked into the Adult Day Service at Baptist... $62 a day! yowza! She cant afford that. Good news is once she gets on medicaid, medicaid provides 5 days a week, but there is a waiting list for medicaid slots. She's on the list anyway. So I started checking to sitter services...the ones I've talked to say 6 hour minimum. *sigh*

Its so frustrating.

update - still in hosp.

Still in the hosp, will be at least two more nights, according to the doctor. and she may need a home health nurse when she leaves. oh boy. Gonna have to let God figure that one out. He's going to have to provide that!

The Hand of GOD

One of mom's friends from our church family visited mom last night. Wonderful lady.

We talked about looking for the hand of God, even when in midst of the storm or the trials we are walking through.

I mentioned that I have to, or I'd already be in a padding room in Whitfield (state hospital).

It was nice, watching them interact. Mom loves this woman, the feeling is mutual. Mom really reacted well to her...remembered many more details about her and her family than I would have guessed. I'm glad.

But the hand of God I saw today was in an unexpected place.

We had parent teacher conferences for our girls today. Another of mom's friends came to the hospital to sit with her so I could go with my husband and talk to our girls teachers. They are both great students, but I'm sure anyone who has ever raised daughters knows that 4th grade is a trying time in a kids life, particularly girls. My fourth grader isn't struggling with her grades, but she is "off her game". I think my mom being sick has stressed her more than I realized. My mom has lived with us since she was born, so she's a constant in her life.

Every year I pray, Father please place my children in the classroom of the teacher they need. We feel they are supposed to be in public schools. I realize a lot of people are called out of the public school system, but our kids are not. They may very well be the only Jesus some of the kids at public school ever see. I pray for a Christian, a good teacher, one that will meet the needs of whatever they will face this year.

He's always provided perfect fit teachers. That can handle our kids, inspire them, push them, help them excel.

Today I found out, that not only does our fourth grader's teacher know what we are going through with mom, but she is LIVING IT. Yes, her mom was diagnosed with "normal" (ie old people) Alzheimer's this summer. THIS SUMMER. Are you hearing me? She's walking in my shoes. Or shoes of the same brand at least. Wow. She understands the fear that mom will forget me. She understands the pain at watching her mom not being able to do something she LOVED just a few short months ago. She gets it. SHE TALKS ABOUT IT IN HER CLASSROOM!

WE have not "named" the disease to the kids. I talk to them in simple terms. Grammy's brain doesn't work quite right anymore, and it cant be fixed. So we have to help her.

Thank you Father, for this teacher. Perfect timing, perfect person to be in our daughters life right now. As of course, you knew way before I did that we'd need THIS teacher, THIS year for THIS reason.

CNN report on EOAD and young caregivers

Wow

http://www.cnn.com/2010/HEALTH/11/10/Alzheimers.youngest.caretakers/index.html?hpt=C2

This makes being in the "sandwich generation" not seems so bad.

reason 20983 you should advocate for a loved one

When they are in the hospital.

Mom is on bed rest. So that means a bed pan, right? Well I got here at 7am. Good thing too, cus 5000 people have been in poking and prodding and asking questions. Had I not been here it could have been bad. I went home last night b/c our doc does 730 rounds and they had nothing planned.

A couple of times today I asked if she needed to use the bathroom. No she said.

At about 330, I thought well its been a long time. Perhaps I should to the nurse. A friend convinced me that since she was napping I could "tattle" and not get busted.

So I went to get some ice and just casually asked the nurse about it. They pulled her chart. The aid had written that she had voided 2x since 7. hogwash. I was here the whole time except to get ice 2x (counting the one I was getting now) I even packed my lunch so I wouldnt have to leave.

So nurses are scurrying now..its been to long. The last thing we need is a UTI. do you know what UTIs do to people with dementia? google it some time. It isnt pretty.

So they came down and sure enough she needed to, just didnt know it.

Why would an aid write it down wrong? on purpose? I hope not. I liked that one a lot. Mom liked her too. on accident? is she too busy to keep charts straight? That's terrible if that's the case. Overworked staff leads to accidents.

But what about the room after room after room of people here with no one with them? What do they do? Do they do anything?

Our doc and nurses would have never known had I not said something. They would have thought all was well. What could that have lead to? I dont know. But I'm glad we took care of it.

It reaffirms my need to be here as much as possible.

I've been to the hospital for a lot of things...

but this one is new.

I've sat in a chair in the hospital with my mom more times then I care to count. Crohn's disease plagued her while I was growing up...and she was in and out a lot. She finally had a resection of the small bowel in 1997, so after that the frequency slowed. Surgery in 2001, in 2003, a short stay during Katrina in 2005. July 2009 started our dementia travel.

But this week, a new problem. I kidded with her and got her to laugh, and said if she wanted to visit the hospital, one of the problems I already can deal with sure would have been nice. ;)

Sunday she told me that her leg was hurting. She has knee aches during the cold weather, so I really didnt think much about it. I gave her an aleve, and she went to bed. She had been to church and up and down the stairs there, so I kinda thought it might just be aggravated.

I was wrong.

Monday morning she got up and she said, my leg looks funny. Funny? Funny? 2-3x the size of the other one is no laughing matter. But she didn't have any other symptoms, I found the pulse in her foot, and it wasn't hot or cold to the touch. I waited for her doc's office to open and they told me to bring her in. The nurse prac took literally one look at her and said. "call the ambulance". So 2 mins and 3 firefighters and 3 EMTs later, shes loaded up in the back of an ambulance and off to the nearest hospital for potential blood clots in the legs.

The U/S guy found them right off. I stopped watching after he measured four.

She was admitted, and they started anticoags. She's on complete bed rest. Cant even use her leg to move in the bed.

And then the battle begins. Shes too young for memory problems right? I begin to get brushed aside at first. Fine. Ask your questions. and when she answers wrong I correct. I get my copy of the POA/HIPPA paperwork out. That helps. As do her list of meds. And her records for the mental health center.

Guess what? A 59 year old woman who cant remember her last name or her birthday? hey doc, she's got serious issues there. Wanna take me serious now? I tried to keep my cool. I know they are doing their jobs. But they NEED to listen to me here. I get I didn't go to medical school, but they really need to take 5 mins and understand that you can talk to her all day long, and if you ask her to tell you what you just said, its gone. So no giving her direct instructions if I am not here. Otherwise, they might as well be talking to the wall.

The only thing she "got" was: "DO NOT GET UP. If you move and that clot moves, your dead" so they scared the you know what out of her. *sigh*

But after they finished their evauls, they all got it. And it got a lot better. And I'm calmer now. and still trying to be kind.

so they are running tests. I asked if the change in her meds could cause it. they dont know yet. Still checking. She's had blood work, and some scans tomorrow. Early reports show poor liver function. Liver function and blot clots CAN be a side effect of her new med. But it could also be other stuff.

Silver lining so far? This should let her be qualified for medicaid again. :)
And i'm not worried. Do you know what that means? I have sat in a chair very similar to this on countless times, and worried sick. I'm not. This is the most serious thing she has ever had wrong with her. And I. AM. NOT. WORRIED. Do you know how freeing that is? If you don't, I pray you find it with Jesus soon.

"All things work together for good to them that love God and are the called according to his purpose." Romans 8:28

"The name of the Lord is a strong tower; the righteous run into it, and is safe." Proverbs 18:10

"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind." 2 Timothy 1:7

a sad situation

Well, mom is having some additional issues now...already :( I was hoping we'd have more time before this started. I'll just say I bought a carpet cleaner and a bedside toilet last week. Only two rooms in our house still have carpet, hers, and our office. I'm thinking maybe linoleum? I wonder how hard it is to install. Later we could put the other flooring I've already bought down in there. I think we really need to see an MD soon, perhaps a neurologist and a gastroenterologist. I think she needs some more help. I got her first prescription since her medicaid ended...YOWZAA! $50 for a generic. :( I dont even want to know what her others will be when its time to get them refilled. I need to talk to Region 8 about getting back in their prescription aid plan. Though its one of the things that will probably be 100% cut in the state's next budget year. At least it would get us to July.

I read this morning that the tough economic times are making states rethink Medicaid period. MS is looking at pushing the "stay at home" care for people instead of nursing homes b/c it costs 1/3 of the $ to keep someone in their home vs 24/7 skilled care. I wonder what that will mean for the elders in Ms that dont have a home to live in? Tx is talking about opting out of Medicaid totally. Wow. What will the poor and the elderly do in Tx?

Ive been googling and reading up about end of life arrangements. Since mom cant make those descions on her own, I get to now. I think that maybe I should pre arrange some stuff. I dont know. All this is so hard!

best money ever spent....

I wish I had bought one ages ago. Mom has always had cats. She loves her cat. Me, not so much. I'm a dog person. I don't care for cats. I mean they are "ok" but def. not my preferred animal. But one thing I H A T E is the cat box. This hasn't been an issue for me over the years mom has been with us, b/c her cat, her box. However, with the decline in her short term memory, she doesn't remember to scoop the box. ICK. Nasty. Blech. Did I mention I hate the litter box?

Anyway hubs was doing it for me until he had a hurt back about 3 weeks ago. I said ok, this is gross. There has to be a better way. Google google google away and I find the "scoop free" cat box on amazon. SCORE! Now there are several different "automatic" boxes out there, but I did some research and review, and while this one was 2x as much $, it was also rated 4.5 stars out of 5 on all the websites I checked. The others were rated 1.5-2 stars.

Add to cart, add some refills, purchase.

It arrived in 3 days (wow!) and was a super breeze to set up. AND I LOVE IT. No more scooping. Its been going for nearly 2 weeks now. The set up is supposed to last a month with one cat. We'll see. I dont care if only lasts 2 wks...worth every every stinkin' (or not so stinky now) penny.

So far so good. I'm telling y'all with my disdain for the litter box, I'd spend double the amount I did if it keeps working like it is. :)

Now, mom. Well. She's doing ok right now. About the same. Holding steady I'd say. I went a head and purchased a mattress cover for her bed (waterproof) just in case. I think its probably wise. We weren't able to get into see a Neurologist before her medicaid ran out. Bummer. So now we have to pay a big down payment, but we have to do what we have to do.

She's doing little things that have always annoyed me about her, but now I can't get mad b/c shes impaired. Like taking the kids candy. That has always bugged me. One of the kids will be saving something ( in this instance it was a cookie with M&Ms in it that the youngest won at a church carnival). My daughter was "saving" it for after supper on Monday. It was in a ziplock in a brown paper back with her name on it. We ration candy/cookies etc around here. After supper she goes to get her bag and with big ole crocodile tears asked me "where is my cookie?" UGH. Mom is allergic to chocolate, or so she's claimed all these years. Of course, by this point, she doesn't remember eating the cookie, so she doesn't admit it. But it had to be her. Because she was the only one here. AND I find the M&Ms wadded up in a napkin later. This is a behavior she has always had...taking stuff that belongs to the kids (or me for that matter) and denying it. But I cant get irritated now, b/c she doesn't remember it. So back to hiding "treasures" I suppose. Having her in the house has always been a lot like having a third child, but its worse now I suppose. Kids I can handle. But how do you correct/discipline an impaired parent? You can't.

Me: I'm going to my first real life caregiver support group on the 22 of Nov. I think its probably a good idea. I spoke to the social worker in charge, and she seemed really nice. Maybe they have some tips for me I havent heard yet. Maybe they can give me a magic wand that would make her shower!! LOL

I dont want to go to a nursing home she said

and I can't make that promise. Do I want to put her in a facility? heck no. Will I have to? Well, the odds say yes. Its not like I have a super big support system here that would help with respite care. Its not like I can quit my job to be a 24/7 caretaker. If we could have afforded that, I would have done it with the babies!

But what did I tell her?

That we'd just have to see how everything works out.

It came up because we were talking to an attorney, about power of attorney and advance directives and all that jazz. It needed to be done before she can't.

She couldnt make a choice about advance directive or end of life decisions. She told me I'd have to make those choices. Thanks. As if this isnt hard enough, but add that on top of it now.

When I came home from work early today to take her to the attorney's office, she had just gotten home from the clubhouse. And turned on the dryer.

On a load of clothes that was already dry.

Set it for 40 minutes.

As if I didnt have enough to worry about. I'm thinking I need to maybe flip the dryer breaker off on the way out? IDK anymore. :(