Shopping with Mom... Am I NUTS!?

It wasn't easy making the call for respite care.  The last time I had mentioned to my mom about going to a Day Center for Seniors she got angry, very angry.  She accused me of being a terrible daughter and told me that she will never forgive me.  Of course I cried, my mom was telling me that I sucked.  All that I had done for her and continue to do for her, none of it mattered, in my mom's mind, I was sending her away.

Yes, it was my mom's body and it was her mouth that was moving but it was not her.  She was lost.  At the time I didn't know she lost her mind, I didn't know what was wrong with her.  Moving changed everything, my mom would never be the same and it took me over a year to figure that something was seriously wrong.

It was over a year ago that I mentioned the Senior Day Car to my mom.  I've been scared to bring the subject up again let alone make the call.  But, I did.  I called last Friday and have the ball rolling.  Her doctor's need to fill out some forms and then she'll be able to go enjoy special activities for folks with her condition.  My mom will meet new people and get to do something other than activities I come up with for her to do, like Wii Fit.

Wednesday, that's in 2 days, my mom is scheduled for a guest visit day at the Adult Day Care Center.  I'll drop her off at 9am and pick her up after 3pm.  I'll get 6 hours off for free.  Yay! 

I'm praying that my mom enjoys herself.

The respite care is a good solution where I can get a break and she can do something other than sitting in her room watching TV.  A TV that I need to change the channel every 30 to 60 minutes, never leaving me much time to work on any project for any length of time.

My mom has been a bit edgy since I told her about the Senior Center and how she can go a couple of times a week and do activities with folks with similar issues as she has.  I explained to her that they are trained professionals who can help her to feel better.

Change always seems to make my mom restless and lash out at me.  She doesn't like change at all, she needs things to be consistent, the same.  When we change her routine, oh boy... currently, we are in the midst of a changing routine and my mom is picking fights with me.

It's so hard to bite my tongue and not take her fight bait.  A word here, a word there... in the past they'd send me into orbit.  Buttons that my mom learned to push so many years ago, even in her demented state, she hasn't forgotten how to push those buttons.  Amazing, especially since most of the time she has no idea who I am.

Confusion.  Unfound words.  Displaced anger.  All of these are more prevelant since letting my mom know that she was going to a new Senior Center so that I could have some time to myself.  She's mad.  She tries to make me yell at her so that she can have a reason to be mad.  I'm not buying in, not this time and it's making her mad.

I'm learning as a caregiver that sometimes you just have to throw your hands up and say, "I'm not going there."  Ignoring the behavior is hard but it's the only way to keep the situation from blowing up.  Blow ups are not pretty and it always ends where I'm sucking up all the crap so what's the point of even going there in the first place?  None.

Today, I took her to Kohl's to return a sweater that my sister bought for her. A sweater that is obviously too small for her and would need to be returned.  Why buy it?  Why she bought her a sweater that is obviously 2 sizes too small, just because my mom insisted it was the right size, is crazy.  It's always a struggle with my mom when she believes a size small is going to fit her.  I've argued with her more than once over items she's wanted to purchase.  Sometimes she buys the thing anyway and I end up chasing around trying to return it on another day after she realizes that I was right.  Waste of time.

Round and round we go when I shop with her.  I hate shopping with her.  I always have.  My mom will always tell me why I shouldn't buy things, even if it's something that I gave lots of thought about purchasing.  It's frustrating.  Mothers!  As crazy as she is, she still knows how to make me want to run as far away from her as I can when we are shopping.

Now back to our trip to Kohl's. 

I asked my Mother in law if she wanted to come along.  She did.  Every time I bring my MIL along, my mom gets an attitude.  She doesn't like anyone coming along our shopping trips.  I know this but I also don't want to hurt my MIL's feelings.  She is a nice woman who I love very much.  Today, my mom got an attitude.  I found myself in Kohl's with my mom who has an attitude and my MIL who only wants to shop for 15 minutes.  15 minutes?!  It's going to take me longer to return this sweater.  We agree to 30 minutes and we'd meet at the front of the store. 

My mom and I went to the service desk to return the sweater with no receipt.  The guy could give us a store credit for the lowest price of the sweater.  $30 was the store credit amount.  My mom, she now doesn't want the credit.  She wants to return the sweater with the receipt that Donna has! 

Long story short, it was a wasted trip.  We brought the stupid sweater back home and my mom told me that I wasn't listening to her about the sweater.  I still don't know what she is talking about.  This morning I needed to give her a bag for the sweater and then we agreed to leave at 1:30 to return the sweater for a store credit.  However, once we got to the store, her story changed and she told me that she didn't want to bring it back today.

WHAT THE FUCK?!

Seriously, I wanted to leave my mom at the store.  I wanted to walk out the door, get in my truck and leave her there.  I was mad.  She pushed my buttons and I got mad... I let her do it to me and I was mad.

She didn't want to shop.  We ended up standing at the front of the store for 30 minutes while we waited for my MIL.  I never got anything that I had on the list that I had written.  I needed a few things at a different store.  Forget it.  Time to pack the old ladies in the truck and head back home.

Now, my mom is all miss disagreeable about everything.  I suck.  She hates my cooking.  Nothing is good in her world.  It's how she gets before doctors appointments, especially doctors that she doesn't know or doesn't care for. 

I can ride this out.  Tomorrow I will take her to my sister's house.  She has the day off so that I can go to the doctors and have a few tests.  I'll then have the entire day to myself.  I'm excited.

Wednesday, if the doctors fill out all the paperwork for Blair House, my mom will be a day visitor.  The first time is free.  After that, $56 a day will give me some freedom and a chance to regain my life. 

I pray that she likes it.  Life sort of revolves around my mom right now, it sucks.  We need more of a balance.  I need to give some of my time to me.  It's OK.  I'm not selfish, even if my mom accuses me of being such on occassions when life isn't going her way.

Only 2 more nights to get through before she is off to Adult Day Care and Susie (that would be me) gets a bit of Respite from Caregiving.  I'm excited.  It's been a long time since I've been able to hop in my truck and go wherever I wanted to go.

My Purse! The Lady Stole my Purse!

My mom was a little off all day today, especially because she missed seeing her Naturopath Doctor today.  She LOVES his doctor appointments and never has a bad night before going to see him.

However, last night I realized that I had double booked appointments.  I couldn't believe it. 

I keep forgetting that my mom isn't right and I told her how I screwed up the appointments.  The only doctor she wanted to see today was her ND.

I contacted the ND's office as soon as I could and asked to reschedule, today preferably.  The only time was 10:30am, I don't think I could make it unless we were out of the Neurologist by 10:10.  No way did I want to rush our Neurologist.

We missed the ND appointment.

My mom was upset.  She was looking forward to seeing her ND today.  The upset brought out Lewy.

This afternoon, she fell asleep in her chair, did some sleep walking, hid her purse and then woke up worrying about her purse.  She has worried about her purse for as long as I can remember... I'm nearing the 50 corner, so it's been a LONG time that she's worried about that damn purse.

Like many care givers, we spend hours looking for shit.  Tonight, my mom decided that it was important for me to help her find her "stolen" purse while I was in the middle of making dinner.  Oh, the timing was impeccable for causing me to lose my stride with preparing dinner.  It was one of those meals where you need to add things in a sequence, pretty quick before the simmer step of my recipe.

I assured her that no one came and stole her purse.

Later, while she ate dinner she said to me, "Susie, you don't understand these people.  They show up.  They are here when you are and they laugh at you.  You see that statue over there, it's laughing at you."

My mom gets a very strange look in her eyes when she is in hallucination mode.  I didn't give her any more helleborous, I decided to do hypnosis instead.

I gave her mind positve commands and told her that she will remember where her purse is in the morning.  that she will have a great night sleep and in the morning, she will remember where she placed it for safe keeping.

Well... let's see if this works.  I believe it will.

Otherwise, I'm going to have to set up cameras to see if I can capture "the lady" in action.

A Sue-prize!!!

Yesterday was a great day all around. 

My mom had a great night sleep and her day was one that was filled with laughter and clarity.  It was awesome to have a pretty normal day with my mom.

We went to Whole Foods to pick up a few grocery items, one of my former colleagues and good friends was in town on business and she was coming over for a visit.

Jo is my friend who bought me a cookbook for my birthday this year that has helped me to make fabulous meals for my family, meals that even my mom enjoys. 

Lewy Bodies seems to screw with taste buds, never knowing when my mom's dish will be returned to the kitchen with the food moved around like she ate it.  You know, that old trick we played when we were kids?  She hasn't started to stuff food in an empty milk carton, not yet anyway.  Do you think I should make her eat it like the nuns used to do to kids who stuffed their lunch into their empty milk carton?

Any-hoo...

It was great to see Jo, we had a fab time.  I think we drank 4 bottles of wine between the 2 of us!  I haven't officially made the bottle count of empties.  It was good wine.  I woke up feeling fine.  No hang over.  Yay!

I've been wishing and visualizing a break.  I've been being specific with what I want as an end result, not thinking about the HOW just believing.  My visualization was to have someone cook dinner for me.  Well, last night, Jo gave me a big SUE-PRIZE... she cooked for me!  It was an out of the blue visit.  I let the Universe do it's thing and viola, dinner was cooked for me!

It was so much fun.  Cooking and drinking wine.  Chatting.  Getting caught up.  Laughing and laughing. 

Last night was a blast.  Jo crashed on the sofa and left early so that she could get ready for her day of meetings. 

Thanks Jo.  Thank you for just being YOU.  I feel like I had a wee vacation.

A Lewy Flair-Up

Today my mom was scheduled for an MRI so that the Neurologist could see what could be going on in my mom's head.

She was worried about the MRI. She hated the one that she had in 2002 because she didn't have music with her and the technician didn't offer her any music until it was over. Poor mom, she was left with a bad vibe which really caused her a Lewy Flair Up today.

Yesterday, after Fios was installed (took all day) I rushed my mom to Walmart so that she could buy a CD player. Her old one had batteries explode in them; I tossed it months ago.

Instead of a CD player which is outdated technology, I planned on buying her a new Sony ipod version 8 gb device. It holds a lot of music and it's tiny. Exactly what she needed to get her through the MRI.

My little mom, dressed in her purple coat, purple hat and purple shopping bag with all things important to her at the time she was putting on her coat, needed... not wanted... NEEDED a red Sony ipod device... especially after I explained to her that she could have a lot of CD's on one little device.

I loaded up all her favorites as soon as I got home. I had her test it out. She loves it. She listened to it all morning, anxious for the MRI to be over.

She didn't sleep much last night, worried, worried what would be found in her head.

She was so worried that she packed one of those reusable shopping bags with cloths. She thought she was going to be admitted to the hospital once they saw what was going on in her head. She can't believe what's going on in there and knows there's something definitely wrong.

I assured her that she wasn't going to stay overnight. Somehow she got pissed at me when I made her leave her 2002 xrays at home.

She pouted all the way to the hospital - miserable trip for both of us. I found myself using her words, "you know, you are the only one who suffers when you have an attitude like that." She replied... "I know."

I needed this like... God, I don't know - I just didn't want to be experiencing Lewy, not today, not ever!

It's difficult to stay calm and cool when Lewy comes around. Sometimes it almost feels like an abusive relationship, walking on eggshells, wondering when the shit was going to start to fly.

I've learned patience with my mom and Lewy. For this I suppose it's a good thing, a blessing if you want to go down the holy road of God and things happening for a reason. More and more, living with my mom and her insanity, I understand how WE are the creators, the GOD of our Universe. No 2 people think alike. No 2 people have the same thoughts. We are separate, but alike.

When Lewy visits, I hate it. I feel it coming on. I see an energy shift around my mom that I feel in the pit of my stomach. I want to throw up. I don't know how long it will last. I can only hope that I can keep her calm enough to suck on the helleborus "candies".

Today was no different. My mom was tired. She was hallucinating. The little girl was back. Dead cats were here - new additions to the hallucinations, but they were there in my mom's world.

Thank God for Helleborus Niger. Thank God for the Sue impostor that my mom likes better than me, she's a very skilled nurse, you know?

4 pellets at a time. Wait. Ask the question, "So Ma, how's things?" She knows that means, "Hey, are you hallucinating? Seeing any little people? Wild animals?"

She is honest and tells me. After 2 hours I ask the question and if she's still seeing things, she gets 4 more pellets under her tongue.

Today, she needed pellets 4 times, 16 in one day. That's more than she's needed in a long time.

She did say something pretty wild to me while driving to the hospital for her MRI. Out of the blue she unfolded her arms, looked at me and said, "I am going to die tonight. Do you think I should call someone?"

How do I respond? Who is she going to call? She asked my advice, asked if she should call my siblings and tell them that she's dying tonight. I advised her against it. I told her that she'll be waking up tomorrow to a GREAT DAY.

I hope she wakes up. I'll feel really badly if she croaks in the middle of the night and I stopped her from calling each of her kids. God, if she does die, I'm really sorry every one.

I do believe she will wake.

She was a collosal bitch all the way to the MRI check in. They make people walk a long mile, seemed like a nightmare scene, no wonder Jo was bitchy. She nearly made me bust out crying. She kept telling me that she was dying tonight. I ignored her. I had to or I would have gotten to the checkin counter with red swollen eyes, sobbing incoherently.

I walked ahead of her as I sucked in the tears. Forcing myself not to cry. I did cry about 3 tears, but I did stop. It was hard, but I did it.

I filled out the papers and circled and stared that my mom has a pacemaker.

Well. No MRI for you today Josephine, not now, not ever. Music to her ears. They rushed us out FAST, she was too close to the magnets.

On the drive home she said, "So, do you think I should notify my family?" I said, "notify us about what?" She said mater-of-factly, "I'm dying tonight. Don't you think I should tell them?"

Again, I said, "no, you will wake up tomorrow. you are doing great. besides, look at all the people you will help one day with this new method of treating people with LBD. You are no good to us dead."

We got home and she insisted on doing Wii Fit balance board. No coaching to get on it and work her mind. She loves the game where she moves her body to get the balls in the hole. She knows this game makes her feel good and helps with her memory.

She also walked on the treadmill until she was out of breath and didn't know how to shut the thing off, shit, she could have died if I wasn't in the room with her!

A few more helleborus pellets, dinner, hugs and happy talk - my mom was once again saying, "Oakey Doakey."

Oh, I love the phrase Oakey Doakey.

Tonight, I gave her Reiki. I called in all the archangels, Mother Mary and Babaji. I felt my hands vibrating. They were hot. My mom, she sucked up the energy. She gave a few jolts, her body jumping, but she settled down quickly as I felt Lewy leaving, he's gone for now. No more Quinoa, no more grains, they seem to contribute to flair ups.

Today I told her how I am using Reiki to dissolve the Lewy's. I believe in Reiki. I believe in the power within all of us to heal ourselves. I believe we are THE spark of God, we are one and yet so separate.

We can heal ourselves, we only need to believe in our power within.