Christmas update

Hadn't been to see mom this month, we've been sick several times.  Sinus, strep, flu, you name it, we had it. Today we were all well, so I figured we better make the most of it.
So the girls and I went to visit today and take her a Christmas present. They had moved from the building they were in while the original was being refurbed, and back to the right one.  Mom had never seen the "real" building, and today was our first visit there. It was nice. They did a good job on the upgrades and she enjoyed seeing us.

Strangly though, after 15 mins she was like "time to go" I said we don't have to leave yet, we just got here.
She sat back down but then about 15 mins later she told us to leave, that she had stuff to do. Well ok then.  Ha.  Met one of her new friends, a sweet lady about to turn 80 that was quiet the talker.

So, I got a picture, but thats about it. I guess they were having some Christmas activities and she wanted us to move along so we left.

She seemed to be doing well, in good spirits and happy. Just not in the mood for a long visit!

I really messed up this time

I really messed up this time.

That’s what mom told me on the phone yesterday afternoon about 4pm. 

This is how the conversation went:

Me:  “Hello?”

Mom:  “Hey. Can you come get me?”

Me: “No, mom I can’t, I’m at work. What’s wrong?”

Mom:  “I really messed up this time I think”

Cue panic!

Me:  “What? What happened?”

Mom:  “I don’t know, but I need you to come.  I messed up. “

Me:  “What happened?”

Mom:  “I don’t know”

It always takes me a few minutes to realize, hello, she can’t convey the thought, talk to someone who can! It’s hard to realize that your parent can’t communicate. This back and forth went on for a bit until I said:  Can I talk to the nurse?

Mom:  “Sure”

Nurse:  Hello?

Me: Is mom ok? She told me she had “really messed up?”

Nurse:  “She’s fine, she’s had a good day, went to the beauty shop and got her hair done, when she got back she asked me to call you. “

Translation:  “Can you come see my new hairdo before I mess it up?”

*whew* this is the strangest disease.

As I told a friend earlier today, this journey has been about unseen shoes dropping. I know that getting her placed at this particular nursing home was a huge blessing, but I live in fear of the “we can’t handle her “ call, even though, logically I know they can.

It just seems that every time we are smooth sailing again, something pops up (don’t get me started on the hidden mail again! I just recently was mortified AGAIN by some mail that had to have been hidden her last week or so at the house – uggh!) 

*Edit typed this us last night but forgot to publish

Not doing so hot right now...

Mom has another blood clot in her knee - not as bad as in 2010, but they had to put her back on blood thinners, and she doesn't understand all the needles.  She never liked needles, but now they make her mad.

I visited today, and she just didn't seem well - more disoriented than normal. She'd been having nosebleeds from the blood thinners and was just mad in general.  She seemed glad to see me and H, but I'm not sure she knew who we were.  I was glad E didn't go, b/c it would have been scary today.

She was angry and she hadn't had a shower - the nurse said they hadn't pushed it today or yesterday b/c she'd been combative about the blood draws.  I didn't blame them, no need to cause a ruckus.  They were making her stay in the community room so they could keep an eye on her nose, and she was mad about that. She was just mad in general.

I hate this disease.

H was so sweet though, she asked mom if she could brush her hair, and she let her.

Then she acted out different animals trying to get mom to guess. She guessed a few, and we got her laughing before we left.  We were there at shift change and spoke to the next nurse too, she's a riot - always singing and laughing and when she saw H doing charades she jumped right in pretending to not understand and making mom feel better.  She also said - I hear these other nurses have made you mad?

Mom said: yeah, good and mad.  She said: ohhhh help us we all know good and mad is bad.  ;)

Well, its nap time.

Today I went to visit mom this afternoon.  I wasnt able to go yesterday, since I had been out of town for three days for a leadership retreat for work.  Its a great program, but my goodness it wears me out. I'm a strong introvert, but I can extrovert when necessary, but it makes me sooooo tired. Its so draining.

E had 3 soccer games spread out over the day so we were at the fields from 830-3. Grabbed some realllly late lunch/early dinner and I feel asleep on the couch at about 6.  That's how tired I was. Most people who know me know I'm usually up until at least 1030.

Mom had the nurse call me yesterday, and it was between games.  She said "I want to come home"
I said, now, you know we cant do that, but I'll be by tomorrow afternoon, to visit and restock the Dr Peppers.  "ok. My knee hurts"  Wonder why? think its the weather change?  Maybe. See you tomorrow.  Bye.

So after church today, I was STILL wore out, we changed curriculum for sunday school and started the "gospel project" which I think its going to be very cool, but it was a pretty drastic change to the "rhythm" me and the lead teacher have worked out over the last four years.  LOL Then we had had a powerful sermon and I was just wiped out. But, H had a afternoon thing with the youth at church, and I had to pick her up at 345, so I went to visit mom before that.

I brought her some Dr P.  Cant enter without that.  HA.  The Aide that saw me asked me to hide, and then went and got mom, being all silly with her and singing skip to my lou, then she asked her - how much do you love me? Mom said "this much" and she opened up a curtain and said how about now?  ;) I found someone wandering around  LOL

Mom was glad to see me.  "I didnt know you were coming!"  - she had forgotten our phone call.  I asked her how her knee was. She said "my knee?  fine I guess. Is something wrong with it?"  Me:  Guess not.  :(

We chatted a bit, she had had her nails redone and her hair fixed, so she was feelin' all spiffy.  After about 45 minutes she said "well, its nap time"  I said do you want me to leave so you can nap?  Yep.  LOL ok then.

I talked to one of the nurses a bit.  I .love. her. She is So sweet. Geniune, and really really really loves her residents. She was sharing some about mom's last few days - and said she was off Friday, they had a special day and she woke up in the middle of the night to remind them not to let mom have chocolate at the party.

Did you read that?  This nurse, on her day off, woke up in the middle of the night to call back to make sure the nurse that was going to be there the next day would be sure to not give mom chocolate.  And she was relating the story to me not in a "look how great I am way" but in a "I was so worried b/c she had had tummy trouble already last week way". Can you say blessed?  I need something awesome to do for these nurses for the holidays, really I do.  They are AMAZING. They all know me by sight and name, and when they call they always start the conversation with " its not an emergency, this is so and so. How are you doing?  How are the girls? "

If you have ever been in the situation of having to care for someone that is beyond your ability to do alone, you know how valuable these self less wonderful people are.  Yes, it is a job for them, yes they get paid, but to see the pure LOVE from these women to my mom is just priceless.  They do a way better job that I ever did taking care of her - and I dont have to worry at all.  Period.  They have it.   I can be a daughter.

Update

Mom seems to be doing ok, for the moment.  I never really know what we are in for when we go, but we roll with it.

She had some visitors besides me week before last, she did remember that when I saw her last. She enjoyed it.  I wish I had more people who could go, but, it is what it is I suppose.

We visited for a bit, and she was in the super happy mood, which I admit freaks me out just a tad...b/c she's TOO happy. Abnormal happy, but I roll with it that too.

She asked the girls where their brother was...which confused them greatly.  The only thing I can figure is she meant MY brother, and maybe thought my oldest was me?  After she said, "but I dont have a brother" she didnt really want to talk to us much anymore. :(  I asked her if she meant my brother, and she just started laughing, which means she's confused and doesnt want to try to figure it out.

We just let it go and the girls entertained her for awhile.

This disease is so strange.

Jimmy's dad died this weekend, and I'm still kind of in shock from that.  And I know I should greatful mom is still here, but she isnt really.  Its hard to process it all.

Its still surreal...

Not having to worry 24-7.

I still worry, but its not the same. The knots in the pit of my stomach are gone.

The place is so great, the staff is awesome.  Mom seems to like it, most days.  I guess that's not toobad.  I have days I dont like everything too.

The nurse called me today, she is so sweet - I just love her already.  You know how you meet someone and you just KNOW they will be important and special to you.  She's one of those.  I need to get her to pose for a picture or something.  Anyway, mom lost a filling, and she was just calling me to let me know that she lost a filling and they had already made a dental appointment for her and they were getting it fixed today.  Just letting me know about it.  I'm informed, and involved, but not stressed by it all.

Its surreal, to know that someone (a professional) is taking better care of her than I could - and the stress is off of us. 

It may sound harsh, but I am grateful.  Because, I can be a daughter, not a caregiver.  I'm still a care taker, but I dont have to be beat down by the "job" of it.  I can be a mom, a daughter and wife, and still love my mom with out being in the minute to minute worry of if everything is ok. 

I feel me coming back - laughter with the kids, having the time and energy to care about myself.  I've been able to go med free (whohoo!) and make it.  I've started eating healthier and getting exercise.  

God works out things for his children - thank goodness.  He orchestrated all the events and lined them up so that we'd be accepted into the perfect place for her at this time in our journey.  

Update on placement

Mom is doing well at the nursing home.  We visited her Saturday - and it was the first time she said she wanted to go home. I reminded her that we can't keep her safe, and she said "oh yeah" and that was that.  The first Sunday she was there we took her to church - and found out how bad it really was there even.  My husband had to follow her the whole time, and she even tried to get on stage with the choir.  She is adament about joining the choir - so we decided at this time we shouldnt try to take her to church but maybe once a month.

Otherwise, she is doing well, enjoying the activities there the nurses say that she seems to be enjoying herself.  They still have her on wander alert, but they are letting her take walks with staff to the green house and around the campus.  Saturday the girls and I walked with her to a gazebo where we spent some time in the fresh air. She seemed to enjoy that. After about an hour though she's ready for us to go on and let her get back to writing.

Moving day

It was very anti-climatic.  She saw the sign for "whitfield" and nearly flipped, but once I said "you arent going to whitfield" she was fine - which even though she is, she isnt.  LOL "whitfield" is where they send 'crazy' people - and she isnt at the crazy people part.  So it wasnt total truth but in context of what she meant it was.

I really had very little to do - we moved her in, met the staff, they took us both on a tour.  I had to talk to the social worker and the doctor, and at about 11 mom was like "bye, you know where I am" LOL well, ok then.

It was hard, but I know its the right decision.  She seemed happier already - of course she claims to know everyone already.

I did have a moment with the doctor and nurses when I started crying - and this lady just arrived to visit her momma, and she gave me a big hug and told me that God knew everything, and that this was the best place - her mom has been their 3 years and staff is the same.  She also told me to visit as much as I could while mom knew me, b/c her mom doesnt know her anymore and she just wished she had come more.  Talk about God putting someone in the right place at the right time.

They are so NICE - everyone one of them you can tell is a calling.

God is good.... Thank you Jesus!

So, I had the talk with mom today.

I just told her the truth, that she needs 24 hour supervision and care, and we can't provide that.
I told her about the place, and - wait for it - she wants to go.  She's glad...said she was scared to be alone, but knew we couldnt do anything about it. PRAISE Jesus!

We are going shopping today to pick up a few new things, but she is ready, happy and relieved.

And so am I.

Thank you Lord - for your peace and guidance.

God's peace, right decisions - still hard.

Its been a long weekend.

I think I mentioned as soon as we got to the hospital to get her on Friday she asked if we were going to Alabama.  *sigh*

As soon as we got home, she was back to despondent.  It seems like she is so unhappy with us.  It makes me very sad, but there is nothing I can do about it.

She went to church with us today, and hubby got her to her Sunday school class, and then met her afterward, and got her to the sanctuary. Reports from her friends are that she was very happy and good.  I hate that she isn't happy around us.

Tomorrow I have to explain the move, and pack her up.

Everywhere I turn, God says "I've got this"  and I am very grateful, but that doesnt make it easy.  I know its the right decision, but that doesnt make it easy.

I pray for God's peace and direction, and His compassion to come through me when I have to tell her. That she will be peaceful and accepting, and not get agitated or upset, or try to leave.

Home from the hospital - for now

Hubby and I went to visit the nursing home we picked for her.  I as really impressed - the 'state hospital' had me worried, but it was amazing!  There are a lot of activities and fun things to do, including gardening, other out door activities, etc. I think once she gets settled in, she will be happy - its the transition that I'm worried about.

I really feel a peace about the place, its clean, the residents were happy. They were getting ready to go on an outing to the park (they have a park on campus). Its 350 acres, and really really pretty.  lots of grass, trees, a lake, a park etc.  All of the medical care she will need is there, from dental, eye, neurological etc.

After we finished the tour and saw the residence, I felt much better.  My only concern is getting her there now.

The hospital released her to me around noon, and as soon as she saw me, she asked if we were going to Alabama.  Oh boy.  :D  Could be a long 4 days!

Day 17 - discharge and admission

The social worker from the hospital called me today.  Mom is being discharged from geri-psych tomorrow.  Then she called right back and said that she would be admitted to the long term care facility on Tues of next week. 

I'm worried that progress we've made will be lost, and that she wont want to go on Tues.  I guess I'm just going to explain that the doctor wants her to have more 24 hour supervision and observation, and that she has to go to the other facility for that now. 

Please pray it goes smoothly. 

Day 16 in Geri Psych - treatment team meeting

Today we had our treatment team meeting at the Senior Care Unit.  Have I mentioned how nice the staff is?  They really are wonderful.  So kind, compassionate - for the whole family not just the patient.  They will never know how much I appreciate that.

Anyway, they told us that they have made some progress with mom - at least as much as can be expected.  They have her fairly stable, able to redirect her from some of her behaviors and have gotten her to a place where she is interacting and while it still takes her a long time to convey a thought, she is trying.

They have changed up her medicine and she seems to be responding to that.

The paperwork is moving along at the nursing home - however we were informed today that the Senior Care unit is pushing it with time, they really need her placed this week or they may have to discharge her home.  Im concerned with that, for two reasons: I dont want to lose any of the progress they have achieved for mom, and I am a chicken and want to blame the doctor for her placement.  If she comes home, I lose that argument, and I dont want it to be an issue when its time to move her.
The social worker seemed confident that it would happen this week, so maybe the doctor was just making sure we were informed.  I wasnt able to think of the "would that be ok for mom, would she lose her progress" question while I was in the room, it came to me later.  I plan to call back up there and talk to the social worker, plus I have left a message for admissions at Jaquith to see if they have experience with that.

I know its the right decision, and the team reaffirmed that placement is the right decision for her- but that doesnt make it easy.  Its still very hard, and it seems to me the path of least resistance would be transfer from the Unit to the home.

Please pray that if God wills it the pieces will fall into place this week.  I know He can.

Day 15 in Geri Psych

Update, day 15

mom has a BFF there - "crazy Mary" is what she calls her herself -
she's about Moms age.  She's new to the unit, as she put it "When
crazy Mary comes out, I know its time to come here"
I thought her name was Mary, but J reminded me this was crazy town,
and Crazy Mary, may infact be a personality. :/ Her niece was visiting and we talked about how fun crazy Mary is, but sometimes it goes a bit to far.  She said they have to joke about it, because its like a roller coaster.  Sounds familiar.

Anyway, Mom and her were having a big ole time in the day room when I
got there, so we stayed in the day room.
They were talking about how nice everyone is - and this black man in a
wheelchair that I had never heard say a word said "you think this
place is NICE?! "  It was all I could do to keep from falling out.

Mom told Crazy Mary that she was glad she could be there to help her
through her problems.  Crazy Mary's niece was there and said, oh me
too.  and Winked at me.

so Crazy Mary's niece was totally in on the game and is a much better
player than me.  Come to find out, Crazy Mary is a regular, and the
niece knows them all pretty well too.

It was a riot.  I cant really do it justice typing it, other than both
the niece and I encouraged them to dance later, after visitation was
over.  oy.

I talked to the social worker on my way out and she said that she had
heard from Jaquith and the paper work is at the 2nd physician (2 plus
the recommending one have to agree placement is warranted) so that
sounds promising.

Monday - Day 7

Yesterday was mom's 7th day in Senior Care.  She was mad, but not at me.  She was mad because she didnt get pudding for lunch.  This disease is so strange.

I found out that she has been medically and conditionally accepted to the dementia unit I'm trying to get her into.  there is one more packet that has to be completed, and I found out late yesterday that the Senior Care social worker has it ready, I have to swing by this morning and sign it, and they'll send it off.

Not sure how long we have after that.  Guess we'll find out.

Moving slowly

Friday was a tough day, Mom had the same conversations she's had with me on Tues and Wed.
But she added some stuff in this time.

She wants Papa to come get her.  Papa is her grandfather, who died before I was born.  She keeps talking about him and how he would take her anywhere she wanted.  Then she said, but he's dead, so Uncle Obert will  take me where I need to go.  (Uncle Obert is dead too).  It was hard, listening to her ask for people to come get her.

The she started talking about her sister, Jane (also dead) and how her sons were really moms sons now, and could I find them? I have no idea where they are now, much less if they would come here if I found them.

Today she was despondant and sad, not talking to me at all.  Its harder to visit her when she is down that manically happy.

The staff at senior care is very helpful, and they are handling ALL the paper work for the home.  I have already provided what I was responsible for, the rest, they are pulling together and sending over.  They seem to think it will be an easy admission.  So does the home, they are helpful and positive as well.

Moving Fast - a whirlwind

So since my last update I went on a field trip with my oldest, so one of my friends went and visited mom during yesterdays visitation hour since the hubby is no longer comfortable being with her alone.

Lets just say apparently it was an experience.  Mom recognized her, and again was abnormally happy.  She also apparently did a "dance" complete with a shimmy, and very suggestive moves.  I'm glad this friend is practically family, or I'm not sure I could look at her again!  I can imagine she was very uncomfortable, I know I would have been.

Hubby had a phone conference with the team, and they recommend 24 hr supervision, and told us to bring any thing they need to fill out ASAP for the medicaid bed I found at Jaquith.  The bed I found is in the demenita unit associated with the nursing home at the state hospital, and everyone tells me they are great.  Both the Alz. Association and my elder care attny told me that it was one of the best, and they take medicaid.  They are working with us and I hope we can get it take care of quickly and with minor stumbles.

I need to provide a copy of a lot of stuff to them, and I went to find mom's SS card and couldnt. I couldnt find her birth cert either, to request a new card, so I went to the web to buy another birth cert, I could have one over nighted.  The credit card processor wouldnt accept my card wed night, so I couldnt order it.  This morning, I went in to mom's room to get something and picked up a folder, and her SS card fluttered out on to the bed.  All I could say was "thank you Jesus" for bringing the card back to me and saving the money.

Just a little reminder that HE's got this all figured out, and I just need to trust him.

Please continue to pray for his divine scissors to cut through all the processes and paperwork, as they have so far.

First Visit to Senior Care

I went up today for a visit with mom to senior care.  I talked hubby into going with me because I was anxious/nervous about what I might see/find/hear.

We got up there, and found mom in the activity room.  It was sad, all the poor people who needed geri-psych help.

Anyway, mom was happy.  Abnormally happy.  In a manic weird kind of way.

She was trying to tell us about all the "little old people" who were confused and didnt know where they were or      where their spouses were, and about trying to help them.  Then about her talking in a circle (therapy) and about watching TV with them.  When we got ready to leave, she hugged hubby again and said "your my daddy now' which really really freaks him out.

So, in all it wasnt too bad.  She seems happy, and not scared or upset, which I was afraid she would be.

Later this afternoon I talked to her social worker, who is helping me with contacts for a long term care bed, because mom cant be alone and we can't find a program that will give us the home health aid times we need.  So I have to start calling facilities tomorrow.

Prayer partners, please pray that we find the right place and the red tape is just cut for us with ease.

Mom moved upstairs today

Mom's potassium was in the normal range, so they moved her upstairs to Senior Care today.
I saw her briefly before I they moved her.

She kinda freaked the hubby out a little, because she said something about knowing he wasn't her daddy but was her son?  I'm not sure exactly what she was trying to convey, but it was odd.

I will get to visit one hour a day now, and only from 130-230.  We'll see tomorrow how its going.

well, mom was in a mood today.

Good news, is her potassium levels crossed the 3 threshold, but they are going to keep her one more night on the regular floor to see if they can get it up to 3.5. She should start her 10-12 day geri-psych stay tomorrow.

Today, after church I took the girls to visit her since they won't get to see her while she is in geri-psych.

Apparently, in some version of her reality, I have wronged her some way.  She wouldnt talk to me and kept her back to me, and stared at the wall. She talked to the kids breifly, but she didnt even want to talk to them.

We stayed about an hour and a half, left and got her some more magazines and a dr pepper.

I'm sure its because I'm not taking her home, or because we aren't "going to Alabama" or something.

Still, its hard to be treated like that.

Hannah said at one point in "awkward'.

So, we keep waiting.  I will be glad when they move her to the geri-psych ward, because then I wont have to fill guilty for not being there all the time, since they wont let me visit but 1 hour a day.

Hurry up and wait...

So I go to the hospital today, and they have assigned mom a nurse round the clock.  I'm so grateful, because I just cant mentally stay there 24/7 right now.  This is very much needed God provided break.

Today's nurse was a hoot and a half.  She had been chatting with mom a couple of hours before I got there, she works in Senior Care F/T so she is used to geri-psych.

She said she needed me to clarify a few things mom had told her, so I found out what an, um interesting morning they had had.

Mom said she had 5 siblings, for a total of 6.  There were 5 total.  She said that all of them were dead except her and her oldest sister. Her brother is still alive. She said I was born my cesarean section.  Welll...that isnt true either.

Then we were chatting about some other stuff, and I mentioned that one time when my brother was little - and mom said brother?! I didnt have a son!  And started to get very agitated and upset, so the psych nurse just laughed and said, well you know how many kids you had, I'm sure your daughter is just confused - and changed the subject.

The nurse patted me on the knee and said I'm so sorry honey.

I guess my life is more interesting in mom's version of reality.

The nurse pulled me aside and told me how sorry she was, that she knew listening to that must be terribly hard, and she hadn't seen anyone as young as mom as bad as she is.

She never remembered my brother all day.

She knew me, and Jimmy, and the girls, and that she had a sister still alive. But thats it.

The nurse told me that they couldnt figure out why her potassium was so low, and I told her about the colon resection she had back in the late 90s, - mom had no idea she'd ever had colon surgery and she's had 3.

She told me today she wanted to go home, and she kept telling everyone she wasnt going upstairs even though yes, yes she is, for 10 days once they get the potassium straight.

Its hard, but a relief at the same time to have total peace in my home, even if its just for a break.  At least we can recharge, and we'll make a plan forward with her team in Senior Care.

"senior care"

Well, when hubby called the clubhouse to tell them mom really wasnt going to Alabama, the guy that answered the phone told him that we should talk to the crisis people at Region 8, and see about getting her into a geri-psych unit somewhere for an evaulation.

I was on a field trip with our youngest, so God bless him he did.  The crisis director sent him to Crossgates River Oaks Hospital's Senior Care department.  There, we had the joy of finding Mrs Kay.

Kay is, literally a godsend, an Angel on earth. She is most obviously in her calling.  I can not recall when I talked to someone more caring, more helpful, and just down right nice - that had answers for us immediately.

The Senior Care Unit at Crossgates RO is inpatient program, where people over 55 come in for 10-12 days, and the figure out whats going on, tweak meds, and try to get them home - but if they feel they need 24 hr care, help with the process form there.  They have 18 beds.  Guess how many empty ones they had yesterday?

I bet you can guess.  One.

So, hubby and I had to take her to the ER, and get her medically cleared.  This took much longer than we all thought it would, because they were so backed up.  Then, the doctor couldnt medically clear her because her potassium is low, something not uncommon in people with a history of crohn's disease.  I was worried at first because they only had the "one" bed, but they assured me that 90% that come in have some medical issue to clear up, and the "one" bed was hers.  So she was admitted to a regular room last night, but they placed her across from the nurses desk and there was a camera in the room.

They asked if I could spend the night, but I was so tired, hadn't eaten since breakfast and it was 8pm.  I told them I really couldnt, and they said that was fine, they got a sitter for her from senior care. I also had to sign a form saying she could be watched by the staff on camera.

She was pretty good the whole time, there were a couple of hours where she got really agitated, and upset, and we got her in a quiet room and she calmed down.

Hopefully today her potassium will hit the right range and she can move.  We can only visit one hour a day, but I think it will be good for her.

Going to Alabama

Well, that's what mom thinks anyway.

Yesterday she called my step mom, which is strange on more than one level.  a) she cant use a phone so I figure she managed to hit redial or call back.  b) she's never liked my step mom, so I imagine that was as a strange conversation period.

She told me that my step mom called her - not true.  Step mom says mom called and asked her where she was, and then thanks for calling.  This disease is so strange.

I didn't think much more about that, stuff like this is "normal" these days.

Until this morning.....

Mom: I told Denesha not at clubhouse Alabama.

Translation:  I told the van driver that I wouldnt be going to clubhouse because I'm going to Alabama

Me: Why? Where did you get that idea?

Mom: We arent going to Betty Mae (mom's sister)

Me: No, the kids have school.

Mom: Oh.

The only thing I can figure is mom thought we were going to Alabama because my oldest was talking about going to Alabama on her field trip next week.  The 5th grade is going to Birmingham and she is very excited.

Oh boy.

So the kids are getting ready for school and at 630 she tells me: Can you get me to clubhouse.

Me: not at 630 in the morning.  We'll fix it.

*sigh*

Lord, bring an answer and solution with quickness!

Monday - rollercoaster!

Well, Mom was ready and waiting in the driveway at 630 am. I just didnt say anything.  She came back in about 830, mad that she had been forgotten, and there was nothing we could say.

When the van showed up at 850 she was happy.

I called the mental clinic and talked to the psych nurse, who talked to the doc.  They evaluated her at the clubhouse and decided to tweak her meds.  Hubby talked to the clubhouse director and made him aware of how mad she was at the driver.

Her anger towards my husband drives me to get a second opinion.  I sent a request in to a psych at the University Medical Center department that deals with these types of things that the Alzheimers Association of Mississippi suggested.  UMC is not easy to get into, but I want them to check her out too.

I also called and talked to the admissions group at the dementia care unit associated with the state hospital.  I know that it sounds bad, the state mental hospital, but everyone I have talked too says they are the best in the state - and they take medicaid.  The lady was so nice, and she said it sounded like she met the quals, but I need to fill out a big packet with her doctor.

It was a long hard day, then I got home.  Mom got in my face b/c she has no concept of "personal space" and told me I was right.  (duh) But when I told her that her apology needed to be to Jimmy because of the things she had said about his character as a christian, she denied she said anything to the kids or the family down the street.

The little girl came and played with the girls in the front yard and street riding bikes last night - I was glad her parents let her. The chain came off her bike and hubby showed her out to fix it, and then tightened it for her.  She was very chatty and happy - in other words back to normal.  I'm SO glad God gave me the courage to talk to her mom. I am not the type to talk to people that I don't know, so that God for his strength.  Then, the other shoe.  We found out mom didnt say hubby hated "black" people - she used the ne'er to be used word that starts with an N.  Oh my goodness.  The color drained out of my husbands face.  Seriously?  Now I am REALLY glad I went to talk to the mom.

I also talked to the medicaid office, to see if there is away we could have a sitter in the afternoons, and while she qualifies, a competent person has to be here to let them in - if I could be here by 3 every day I wouldnt need their help.  The lady was very sweet though, and is going to look to see if there is some other program that could help us.

So, I made all the calls, requested all the help, and now we wait.

What a day...Easter Service, the police, racism, what a day

Where to start?  I guess I will start at the beginning.  So yesterday, we had the whole "they forgot me" day, but today, when we got up, mom was ready for church and I thought we were back to our version of normal.

Wrong - o

When we got home, mom came tearing in the room after me "I need to talk to you"

OK, I said.

"All I want from you is to get me to clubhouse, they are going to think I am sick, if I don't go"

Mom, its Sunday, they are closed.

NO they are not! (I admit, I was scared there for a min, cus she had wild eyes).

Mom, do you want me to take you up there and show you?

YES because I will be OK if I can just walk through the doors.

Ok. So I load her up and drive her to the clubhouse.

Of course, its locked and closed.  No one is there.

She beats on the doors for awhile, tries to open it.  And getting frantic. She finally got back in the van.

We left, and if I hadn't had the child lock on she would have jumped out of the van at the red light because she saw a white van.

So we come back home, have Easter lunch with some friends, an egg hunt, all seemed well - or wellish.
But, as soon as dinner was over, she was back outside, waiting for the driver of the club house van.

We got her back in again, and then she started going on about how she was supposed to have a phone, that she had filled out a form and I must have thrown it away.  I have no idea where that came from.

So, later, we are out in the front and the kids are riding their bikes.  She came out and said she was going for her walk. I shouldnt have let her go, but she normally goes to the end of the block and turns and comes back, and I can see her, but I got busy with the kids and realized she didnt turn back.  I had this heart sinking feeling that she was going to the clubhouse. First, the kids and I started walking down the block to look for her, but we didnt see her.  And while we were walking, the oldest starts talking.  mom had been telling them we were lying to her about the date and the clubhouse, trying to keep her away from it. And she told a child and her mom down the street that my husband hates black people and that her daughter shouldnt come play with ours.  (you guessed it they are black -interracial infact). So on the way back I stopped to talk to her mom.  I told her what was going on and that my mom was missing, and to please not believe her. That her daughter is totally welcome and that we like having her play with the kids. Ugh. talk about uncomfortable.  But she was visually relieved that mom had a reason for saying that stuff.

She's also been telling the kids we've been lying, and that God needs to open our eyes to how we treat her. She also told the kids she was leaving, and she had people that would help her if she could just call them.

So, I get back to the house and decide to drive the van around.  Hubby calls the cops.  We drive the route the van takes to clubhouse but I dont see her.  I start calling people to pray.  A total of two hours later, pearl PD finds her.  Walking down the road to toward the clubhouse - and she had gotten lost, and went in some strangers house - oh how bad this could have turned out.

I talked to my aunt (her sister) what all was going on. She told me its probably time to find somewhere more safe for her - just like it was time for her mom back in the 80s.

Anyway, the Police brought her home and she didnt think anything was wrong.  That she'd just been for a stroll.  I'm exhausted, the kids were terrified and it was not a fun afternoon.

Neighbors who know us know we aren't racist or mean to momma, but the fact that she tells people that really bothers my us.  At the advice of my neighbor that works for mental health I called it into her psych.  I imagine we may have to have a 72 hr hold on her this week.  We all need prayers and strength from God right now.

Saturday - or is it?

Well, today was "interesting".

This morning, when I got up, mom was ready for clubhouse.  However, its saturday.  Oldest told her a couple of times, hubby told her...but it didnt matter she was staring out the window.

Then she went outside and stood behind the van.  I went out, and told her, "mom, its Saturday"
Her: "they'll be here in a minute"
Me: They are closed on Saturday mom.
Her: "NO they arent"

So I went back inside.

Later, we got the kids ready to go to the Easter egg hunt in town.  We went and loaded up in the van, and I asked if she wanted to go, and she did come with us, but she wasnt happy about it.

I thought it had passed....until tonight after dinner.

We were dyeing eggs out on the patio, and she came out to tell me how made she was at the driver for not coming to get her.

I told her again, mom, its Saturday, they are closed today.

NO they aren't. Everyone will think I was sick.  Why didnt she come get me?

She began to get very agitated and finally went to "read" her Bible.

I thought all was well again...until I went to get her in the shower.

She took her shower, and while I was outside with the kids, she got ready for church.  *sigh*

My oldest daughter found her in church clothes, and told her it was Saturday again.  We got her changed and then I went to talk to my daughter, because I could tell she was upset.

So we had a nice talk, and she said she had an idea for something to help. She drew a machine that helps people with Alzheimers, and she put on one page: goal for life, find a cure.

She wants to "help"

Well, for some reason, I dont know what clicked, maybe because I've been insanely busy and going plain bonkers with girl scout cookies, but mom decided this week she should "help" around the house.

So she's been taking laundry out of the dryer and folding it.  Ok, thats good.  I have to sort it, because she folds it all into one big stack and doesnt try to sort it, but its folded.

Then Friday I get home and see a stack of folded clothes, cool, I think. I had left a load in the dryer, and one in the washer that hadn't been washed.  I go to the washer - no clothes.  Um. My mom hasnt been able to turn on an appliance by herself in over a year.  So I check the dryer...no clothes.  Hmmmmm  I think.  Two appliances in one day?  Just doesn't seem right.

So I go to the stack - yup, as I suspected, she did fold the clean clothes from the dryer...however she also folded the DIRTY clothes out of the washer. And since it was two loads of darks, I have NO idea which clothes are which. I cant remember what I washed.  LOL

She was SO proud of helping, so I gently asked if she took the clothes from the washer too, and she said yes, they were dry, so I folded.  LOL God love her. But at this point I have to wash both loads, because I have NO ideas aside from a few pieces which was clean and which wasnt.

When I told the hubby - he said, well that explains why the shorts I got out of the stack were still dirty.  (he beat me home)

Too funny. Strange, but funny. To her, they were dry, so they should be folded.  I guess I need to be more careful about where I leave dirty clothes!

Happy Birthday to you too

Today is mom's 61st birthday.  Though she would tell you she's 53.  She's been 53 for a long time now.

Anyway, the kids wanted to give her her birthday present this morning before school.  We got her some new pretty notebooks, new pens and a new hair brush, since she is so into those things.  She was very happy - and when she hugged me and I said "happy birthday" she said 'happy birthday to you too". That made me very sad - she doesnt even know what a birthday is?

My husband has been very sick for two weeks, and stayed home from work again to go to the doctor.  We also got rid of our paid tv service this week.  When I came in from work, with the kids, and we were getting ready for dinner, she was pouting.

I knew something was wrong.

I asked, do you not want dinner?

NO, I dont want anything to eat.

Ok, I said.

We ate our dinner, and I asked if she wanted birthday cake...she shrugged, still pouting.

She came to the table, and the kids were excited, and she was staring at the wall.

We lit the candles and sang, and we had to say 'are you going to blow out the candles?" and she did, but with this pissed off attitude.

I asked her again - whats wrong?

She started crying and said "I've been here all by myself all day and couldnt get the TV to work"
I said, didn't you go to clubhouse? And she said well yes....

And my sweet husband lost it. long story short, it wasnt pretty.

Anyway, my mom has always been a class A royal pouter, disrespectful and ungrateful for things done for her - and apparently this part of her personality is not going to change.   I have come to the place where I realize there isnt any thing I can do about it - but disrespect is a big deal for my husband.  And I can understand that....

But I feel like its all my fault.  I am the reason he is miserable, and I cant do anything about it.  She has lived with us since before she got sick, and disrespect for him was an issue even before the disease.  It hurts me so much to see him upset, hurt and angry.  All I can do is pray - pray for more of the fruits of the spirit and pray for peace for us all.   I pray that my sweet husband can find some relief from the burden he carries...but I dont know how to help.  I

How do you handle issues like gratefulness and disrespect like this?  Its not the same as training a child, they can learn.  I've been told I allow too much from her and she knows more than I think she does - maybe that's true, but how can you tell the difference?  She got home today at 250 - hubby was here, working on stuff for work in the office, and the girls and I got home at 5.  There was no "here all by myself all day" - time is a foriegn concept to her, how can things like respect and gratefulness be in there at all?

this disease is so strange....

So for dinner we had steak, baked potatoes and salad.
Mom is fixing her plate - and she makes potato salad.  Putting salad stuff on her potato.

I don't say anything, because she eats it, but what part of the brain makes stuff like that seem "normal"?
Nothing is "wrong" with it, other than people just normally don't eat it that way.

I can't get married.

Friday morning mom comes to me and tells me that she can't marry Willie (whew).  I ask her why, and she just says she can't.  I said did something happen?  She said Willie's family doesnt want her to marry him, and that she had been thinking about it and just can't.

I told her that I thought she was making a good decision, for many reasons.  1) it might mess up their disability, 2) they couldnt live on their own, etc.

She said, thats what the director of the clubhouse said.  I said, listen to him, he's wise about these types of things.  (he also calls me and tells me whats going on up at the club house with mom).

I'm glad she came to this decision on her "own" because I didnt really want to have to use my power of attorney to stop something inappropriate.

The spot on her head is getting bigger - she will not leave it alone! The director called me the other day to make sure I knew about the bald spot.  I told him I did and had shown her nurse prac, but she just wont leave it alone.

Today while the kids were out of the room, I said, mom, you realize your going to end up bald if you dont stop right?  She just gave me a go to hades look and turned her head.  Its so frustrating!!

clothes

So I got mom in the shower tonight, and had put her pajamas in there.

Hannah had been in the bathroom taking her shower earlier, and before that I had her try on a new pair of school uniform pants.  She put them back on the hanger and left them in the bathroom.

Mom took a shower - and put Hannah's school pants on.  Which, was kinda funny looking, since Hannah is a good bit smaller than mom.  ha.

I thought - wait a minute, something isnt right here....those pants a) look new, and b) look too small.

Yep, it was Hannah's pants.  It took a good bit of convincing to make her change - but I got them back and in Hannah's room now.

Its always something, and I never know what that "something" will be.

Always amazed at how the Lord helps on this journey...

Today I went to church, as usual. It was a good service and sermon, as usual, about being salt and light.
I sat in the normal place, near some people I've known for awhile.
On the way out, one of them said something to me about not knowing mom had her troubles, and that her grandmother suffers from the disease.  She was nearly in tears while telling me to enjoy what time I have left.

The good Lord knew I needed to hear that, to help put my frustration into perspective.  I'm grateful for my friend for telling me what was on her heart.  This walk is hard.  It's long. It's frustrating.  But, its the one I am on.  It's my job to find the fruits of the spirit along the way, and make sure I am growing them.

I want to SCREAM! But it wont do any good

Well, mom seems to be ok with the cat being gone.  Then she tells me she wants a dog "like Deanna has" which is a chihuahua.  Um no.  We have three dogs thanks.  And I can't handle the little yippee dogs.  Then she tells me she wants a red truck - yeah like thats happening.  LOL

We got some good news this week medicaid decided to cover her medicare premium, so she will get that money back into her disability.

But seriously, I want to scream.  She CONSTANTLY picks at her head.  Its driving me nuts.  Nothing can make her stop.  I say the same thing over and over and over and she'll stop for a few minutes and then right back at it.  I get so frustrated! then she askes me if some medicated shampoo will make her hair grow back - NO not if you keep picking it out.  She says " I dont do that" she doesnt even realize she does it ...ALL the time.  I mean ALL the time.  There is never a time if she isnt doing something with both hands that she isnt picking at her head.  It makes me nuts.  I just want to Scream: STOP IT! but it wouldnt do any good.  Which is almost more frustrating than wanting to scream.

I can feel my shoulders migrating up to around my ears.  I only have one muscle relaxer left.  :(

Where's the cat?

So, I took mom's cat to MARL today. They were really sweet.  I told them what was going on and that I was afraid the dogs would hurt her, they took her no questions asked. I left her carrier, her big container of food and then some donations from my youngest's girl scout troop.

 The sad part is, Jimmy and I got there about 5 mins before they opened, and there were already three people there with cats to surrender. One man had a tiny little kitten, he said the momma cat abandoned the kittens and he tried to save them, but they had all died but one and he didnt know what else to do.  It was really sweet, a great big ole working man - worried about that tiny kitty.

One of the other guys had two feral cats he had trapped- wow were they wild! and then there was one tame one.

MARL is such a great organization.  I hope if you live in the metro Jackson area and are considering adding a pet to your family, you'll visit a shelter. There are several in our area, but I would recommend the Jackson City Pound (Jackson Friends of the Animal Shelter is an amazing non-profit that helps city pound animals) and MARL.  If you dont live the area, please consider adoption of a shelter animal.  There are tons out there- some even full blooded like my Ally Kate the pug.

Jimmy told me when him and Emma got home (she didnt feel well so I dropped them off on my way to take Hannah to KingSingers practice) the first thing she asked Emma was "Have you seen the cat?"

Oy.  I know it was the right decision, but its going to be hard if I have to tell her about it every day.

bye bye kitty

 Mom has always had a cat - and the one she has right now she's had for 8 years since she saved her as a wee kitty at about 6 weeks old from some nasty boys.

Well, Sunday something happened and she bit mom on the arm.  Not sure what the deal is, but the cat was ticked off. Mom claims she didnt do anything, but would she remember?

It got infected and I took her to the doctor yesterday.  All was well.

Last night, she bit her again. Mom doesn't want her in her room any more - which is a problem since we have three dogs, and two of them are NOT fans of the cat. So, I asked her if she wanted me to find her a new home, and she says yes.  I got her out of her room and have her crated.

Today I will take her to MARL and tell them whats going on, and hope they can find her a home.  I'm not sure how the kids will take it, pets are family to us. However, I feel the most humane thing to do is surrender her to MARL.  I cant put her outside, poor kitty has never been outside.

The joys of being in the 'sandwich' generation.

Sandwich generation: the group of people who are caring for aging parents and their own children.

That totally fits us, and today, I don't feel like a nice sandwich, but more of a nasty sandwich. Maybe that ham and cheese loaf stuff?

I went to bed at normal time. Yeah for me! Awoken at midnight by a scared child - not a problem.  Help her out, get her back to sleep drift off to sleep again.  I wasn't awake long enough for it to impact my sleep cycle - whohooo.

3 am. light on in the living room, which I wouldnt have noticed if Jimmy had not gotten up to go to the restroom and woke me up b/c the light was on. I sleep through that kind of stuff.  Unless one of the dogs or kids wake me up, I have trained myself to let Jimmy handle the other things - noises lights etc.  ha So I get up.  Mom is in the living room, completely dressed to go to clubhouse, down to her jacket, watching TV.

Ok - good news - she was completely dressed in clean clothes and ready for clubhouse, without assistance.   Bad news, its 3 am.

Have you ever tried to explain the concept of 3 am to some one who doesnt get the concept of time?  Most parents have - because kids don't get it.  However, kids can be taught.  Eventually, they understand.  Have you ever tried to explain the concept of time to some one who will NEVER get it.  Its beyond frustrating!

So, since it took me awhile to convince her that it was middle of the night and she needed to be in bed - I was now fully awake. Great.  I took the opportunity to spend the next hour praying, and finally my heavenly daddy helped me drift back off to sleep.

Dealing with someone with dementia, is a lot like parenting a 3 or 4 year old.  they know just enough to be contrary, but you cant reason with them. The difference - the big difference - is you can train a child, but you cant train someone who cant remember.  Its very frustrating.

I don't mind being a sandwich, but I sure would like to be a yummy sandwich. Not a couple of pieces of soggy white bread with ham and cheese loaf.   Its harder to be a sandwich when you don't get enough sleep.

Stuck on Black People

So I mentioned last post about mom chasing the African American lady down in our church parking lot. Ever since she decided she was "marrying" Willie (her "boyfriend' from clubhouse) and confronted me in the kitchen about two inches from my nose, asking me "what would you do if my boyfriend was black?", she's been stuck on race.  The she told my Mother in law that she and Willie had gone to sonic and they refused to serve them.  Totally a made up story.  *sigh* Even if they DID go to sonic (which they havent) they wouldn't have been refused service, unless maybe they had no money...ha!

Well, there is a new family on our street, and you guessed it, they are African American.  They have kids, the kids have join the street play with the other kids, mine included. Its nice to have more kids around, when we moved in the neighborhood, save the neighbor's son, ours were the only kids on the street.  Now across the street a family has moved in with two kids, and now down the street there are some more.  Nice people, we are not the type to care if someone is purple, they are God's children just like we are.

Mom takes "walks" down to the end of the street and back, and one day I saw her stop in their driveway to talk to them. No biggie, I think. - Wrong!

Today, hubby goes to the neighbors to pick up coupons for me, and the neighbor tells hubby that mom had come over to his house to ask him "how he felt about black people living on the street" apparently, she is tickled that "they are allowed".

Sooooo, I guess I need to be sure the adults in this house knows whats going on, before she says something totally inappropriate and they think we are "those" kind of people.  *sigh* .

Of ALL the things to be hung up on, why this?! This is Mississippi, it hasnt been long - and was in her generation, when race relations were so strained, lynchings were common place.  Race relations still are not great today - even though I'd say they are better - at least from what I can tell.

Anyone have any ideas on THIS one?  I feel like I should explain her behavior, inappropriate comments that she doesn't mean anything mean with them. Or would that make it worse? I have NO idea what to do with this.

Feel free to comment on this one.  I really am at a loss!

Need to go there

So, mom has started some compulsive behaviors.
Scratching her head in the same place over and over (until there is a bald spot there now)
Flipping her hair.
Copying the Bible word for word in a notebook.

Of all of them copying the bible is least annoying.  But its strange.  6 mos ago she couldn't even write her name, yet right now she can copy the Bible in a beautiful script...word for word letter for letter.

Now, there is no rhyme or reason to where she starts, but whateve.  I can live with it.

The other day she comes to me:

Her: I need a note to go there.

Me: where?

Her: there. That place.

Me: what place?

Her: the place in pearl, with the tables. the tables, and the bathrooms.

Me: how are you getting there?

Her: the person with the car, but they say I need a note from you.

By this point, I am totally confused.  She goes to an adult care center daily, and I assume a "field trip" would be a lot like for a kid in day care, forms etc that need to be filled out. So, I try to get more info.

Me: Why do you want to go there?

Her: so I can copy my Bible. The ones at clubhouse think I am crazy for it.

this is the point I have to try to keep a straight face, after all, clubhouse is FOR mentally challenged adults, and the idea that they have labels for some of them as "Crazy" I find amusing.

So she cant tell me what she really needs, where there is or anything. So I send a note with her, please give me the info, because she can tell me.

I tell her, until I have more information, I cant write a note that says you may go "there", and if you got seperated from them, could you tell someone where you need to be?

Her: yes

Me: really? where do you live?

Her: here.

Oy!

this is such a strange, strange disease.

And, she apparently is stuck in the 50s, where black and white people were segregated in the south. She chased a black lady down in our church parking lot on Sunday - to tell her she was so glad that a black woman was at our church - and Jesus loves her.  Now, this lady looked at her like she was nuts, said "um, thanks, and I know?"  And beat feet to flee from her before I could catch up to explain.  Oh boy. These new developments could be the source of many interesting situations.

I just don't get it....

How can mom all of a sudden only want to eat food that is take out or junk?

She is refusing to eat food we cook. I don't get it. Its even things I KNOW she likes.

Its very frustrating...and while I know its probably not intentional, it sure FEELS like it.

After working all day and taking care of the kids and life stuff, it sure ticks me off when she won't eat.