Rest For The Weary

We've known for a while now that the time has come to find outside help for mom. Some of you might ask why we haven't done that yet; after all, I've been setting aside money from fundraisers for the past year and talking about it even longer. Let me break this down for you.

Average In-Home Caregiving Company = $20 an hour (average)
x's
40 hours a week (that's just the minimum)
x's 4 days a week
=
$3,200 per month

Even with the fundraisers I've done, I don't even have enough money saved to pay for one month of caregiving.

Frequently asked question: Isn't there some kind of assistance that will help pay for an in-home caregiver?

Yes, IF you are low income and IF you have no assets (which includes a house).

If you are well-off, you can afford to pay for a nice company to come and care for your loved one.

But, if you are stuck in the middle class, there is no help!!

Story of our life. I could write an entire blog just on this topic, but I'll spare you the politics. The fact of the matter is this: if you are an average, middle class family, there is no help. You have to have nothing to get anything in our society. The most we can hope for is to find a facility that will accept mom's social security and disability (which is minimal) as payment to LIVE in their facility. And even then, what will the quality of that facility be? If we want something nice, we're gonna have to pay for it. If we want to keep her at home, there is no help financially for the middle class. It's been a huge source of frustration for me, and I'm sure even more so for my dad as he has the stress and heartache of how to care for his sweetheart and keep her happy at home as long as possible. I can't tell you how many times I've laid awake at night contemplating the issue; it sounds dramatic, I know. But until you've been in this situation, it's hard to know the struggle and the heartache it brings.

I know our family is not alone. There are thousands, perhaps millions, who face this same dilemma. I have no idea how they do it. Oftentimes people have to give up the things they've worked hard for their entire lives (houses, cars, etc) in order to obtain proper care. I've met people who have had to sell all they have and move out of state just to make it work. This is tragic. Why can't more be done to help these people? Why can't the people who have worked hard to make their way in life be rewarded just the same as those who have struggled? It seems an injustice to me.

This issue has weighed heavily on my mind for quite some time now. And then it came to me: I had (what I would consider) a brilliant idea. But every brilliant idea is also a little bit crazy, right? For those who know me, you know how much I HATE to fail. Too many times, we let our fear of failure hold us back from potentially accomplishing great things. If we let that fear hold us back, we can miss out on opportunities that can not only have a huge impact on our lives, but on the lives of those around us as well. And so, after months and months of deliberation, I've decided that I am ready to move forward with my crazy, brilliant idea. And I'm going to tell you ALL about it tomorrow!!! Stay tuned!!!

The Note

Mom's latest "thing" is leaving notes on the door, attached with lotion, to let her caregiver-of-the-day know to leave her alone. One lady from church wasn't wise to mom's ways yet when she came the other day and she went back home after finding mom's note on the front door. Word to those caring for mom who may be reading this post: ignore the notes.

While I was in Idaho, my sister texted me a picture of this note that she woke up to find on mom's bedroom door.

Interpretation: "Don't come in now you can't see me naked and Plain Jane."

Dad and I was laughed out loud when we read the note.

This morning, when I arrived at mom's house, I found a similar note on mom's door. Except this time she "lotioned" it the wrong way and the writing side was sticking to the door. I would've taken a picture of it because it made me giggle, but I forgot my phone at home today! I'm sure you can imagine ;)

You may notice that there are some misspellings in her words. I've noticed lately that she has been misspelling words and names of people (even her grandchildren). If you know my mom at all, you know that this is another down slide. Mom was always proud of her Spelling Bee status. If fact, her name hung on a Spelling Bee Champion Plaque at the middle school for years; she was very proud of that. I'm not really sure if she can still read. I think she may be at the point where she can read and write what she wants only.

It's Almost Here!!

It's almost time!! We only have one month left until the Walk to End Alzheimer's! I'm getting giddy about it. In fact, I've already figured out our dress code for next year. I know, I'm a nerd. But I really enjoy coming all together in support of my mom and all of those afflicted with this cruel disease. This year is going to be the first walk that my brother and his family will attend, and I'm really excited about that. We will ALL be together, united for mom!

Let's take a look at some fun pictures from last year. We sure know how to have fun.

So of course the purpose for this walk is not only to march around with purple hair and stylish t-shirts to show our love and support for those with dementia, but it's to raise money for the Alzheimer's Association who provide a lot of resources and support for the families and individuals affected. Their programs simply could not run without the generous donations from sponsors. With that said, if anyone feels inclined to donate to this cause, please visit my page and consider donating! My goal is to be a champion and I'm only $125 away ($500!!)

CLICK HERE to donate to the coolest Team Dee Captain ;)

While We Were Out

While we were taking our trip to Rexburg, I got a call from my sister, relating a phone call she received from my Aunt. Apparently, my Aunt had gone over to watch mom on that Friday. She heard the blow dryer going in mom's back room so she decided to check in on her. If you missed my earlier post about the blow dryer, mom has been burning holes in her clothes as she tries to dry herself with the blow dryer. When Aunt Claudia walked into mom's bedroom she expected to see mom drying herself off with the blow dryer. To her surprise and horror, she found the blow dryer laid down on the stool next to mom, turned on to full heat as mom stood by with a knife in her hand, chopping down on the top of her hair in an effort to cut off the pieces that were bugging her (you can catch up on her hair cutting adventures here). After an unsuccessful search for the scissors, mom got wise and decided a knife might do the trick. Needless to say, all of the knives are now under lock and key.

On Monday, I went over for my morning with mom. I heard the blow dryer going, as always. I was a little wary of the noise given my Aunt's experience the week before. Sure enough, when I walked in mom's room, the blow dryer was sitting on the stool by itself, emitting intense heat against mom's pant leg as she stood over her mirror, applying gobs of make-up on her face. I walked over and without any warning to mom, unplugged the blow dryer and hid it away. While I searched for a hiding place, mom told me I should "support" her and shouldn't be taking her blow dryer away; she was completely oblivious to my hiding place next to dad's side of the bed. For the rest of the morning, mom was upset with me and mumbled comments such as,

"You need to give me back my blow dryer...you should support me...I never did this to my mom..."

It was hard and a part of me wanted to make her happy and give her back her blow dryer, but I knew I couldn't give in to her temper tantrums. I wouldn't give my toddler a knife just because he threw a fit that he wanted it; it's the same scenario with my mom. The blow dryer has become a hazard.

Fast forward to the next couple of days. My Aunt and Uncle have been over taking care of mom and have noticed that the shower stall is completely dry. It seems that without a blow dryer, mom's routine is off and she believes she can't shower. I brought this up with my dad and he came up with an idea to disable the wire that gives heat to the blow dryer. He figured most of the risk would be gone with the heat. He asked if I'd check up on her this morning and make sure that she showers.

I showed up to mom's at 9:00 this morning, right as she was about to start getting ready. She complained of me being in her room, concerned of my seeing her "naked" and a "plain Jane". It seemed as though she planned to shower, so I left the room to give her some privacy. After about 20 minutes, I decided to check in on her since I hadn't heard the shower going. I found mom halfway dressed with her head in the sink. Upon further inspection, I found that the shower stall had only a few drops of water directly under the faucet while the rest was dry. It didn't take long to figure out what mom means when she says it's a "severe shower day". I am guessing that "severe shower days" means she gets her whole body into the shower to wash off; the rest of the days it seems she must be washing her hair in the sink and perhaps rinsing her lower half in the shower. I don't know exactly how long this has been going on, but I think the dry shower stall mystery is solved :(

At our previous trips to UCLA, they always liked to point out mom's strength. At the top of the list was her hygiene and the fact that she was still able to take care of herself. Now that this is slipping, I wonder what is left.

The Past Few Weeks

A couple of weeks ago, my dad and I loaded up his trailer and drove my daughter up to her new home in Idaho, where she will be attending college. This new phase of life is very exciting and even more so because she is going to my alma-mater! It was so much fun reliving memories and traditions of when my parents took me up to college 15 years ago. We took her to her first dinner in Rexburg at the same restaurant my parents took me too. We have some funny memories of our dinner there 15 years ago...let's just say our service was horrendous and after our 2 1/2 hour dinner ordeal, my dad left the waitress with a penny tip and a note: TIP: To Insure Promptness. Yet, we went back. What can I say? We love tradition. My dad and I are both very alike in that; we have a sentimental side that loves tradition. Luckily, our service was completely opposite this time around and it was fun sharing those memories with Maurina.

We took a trip down memory lane and toured the campus (which has changed a lot) and I shared stories with Maurina about my glory days. I reminisced about Mother's Week-a week in which all the mothers came to visit their kids at college, went to class with them and attended various activities put on by the clubs and programs. I have such fond memories of the 2 years that my mom came up to visit me for Mother's Week. It was bittersweet thinking about them.

Before we left, I tried and tried to get my mom to understand that Maurina was leaving for college. I wanted to spark her memory of those happy days when she took me off to school, explaining to her that Maurina is going away to the same college I went to, but any memory mom may have is now hidden in a deep place. She understood my explanation of college about as well as I can understand calculus-which is not very well. Before we left, Maurina tried to give grandma a hug and tell her she was going, but mom hardly acknowledged her and stood still while being hugged. Later, Maurina resigned to the fact that "grandma probably won't remember me by the time I come to visit at Christmas."

Though the trip was a little bittersweet, it was mostly sweet. Even though mom couldn't join us, I will forever have those memories to hold onto and cherish. I do have to say, I am very grateful for the people who helped out while we were gone on this trip. I really enjoyed the father-daughter time with dad. We always have good conversations and fun while we're out...even though people frequently mistook him for my husband rather than my father. Ha ha. This trip wouldn't have been possible without my sister and her husband, who spent their nights over with mom, and for my Aunt and church friends who made sure to be there to care for mom while we were out. It's important for caregivers to get a break, and dad sure needed it!

Throughout our 16 hour drive there and back, we had a lot of time to talk. We talked a lot about mom and about the future with mom. We have some really hard decisions to make; or rather, my dad does. Much has transpired over the past few months and mom is really to the point where she needs more care than we are currently providing. Yet, we aren't ready to think about a "home" for her. I honestly don't know if my dad will ever get to that point. But it's evident that we need to do something more than what we are doing, both to keep her safe as well as to keep her out of trouble. So...back to the drawing board. I suppose it's time to look into hired help.

Here are a couple of pictures of the trip we made when my parents took me to college. The second one was taken during Mother's Week. And I don't know why I look so wide in the picture; I think it's the dress ;)

Mom’s New A-Line

Last week, a facebook friend posted a picture of her daughter with a caption lamenting the fact that she had taken a pair of scissors to her beautiful, long brown locks…and the day before school starts! Her little girl had taken out a good chunk of hair right up to her jaw line. Mom was upset and by the looks of the picture, her daughter was upset as well; no doubt she got a good reprimand!

I’m sure many people viewing that picture either flinched in horror or chuckled with memories of their own curious, young children. I’ve had a couple of close calls myself with my own kids. But when I saw that picture, it wasn’t my kids I was chuckling about. I almost typed out my comment but then thought about how strange that must sound to all of those reading who don’t know me. Can you imagine a comment reading,

“I had the same problem with my mom this week!!”

Well…let me tell you…it’s high time my dad hid the scissors from my mom! Last Monday (a week ago) I went for my usual day with mom. I peeked in her room and saw that she was still primping in front of the mirror. I closed to door quietly to give her some privacy; she hates me seeing her as a “Plain Jane”. Back in the living room, I heard the blow dryer go on and I knew right away that she was likely burning more holes in her shirt.

[Mom gets very sweaty, but she doesn’t understand why she is so “wet”; her solution is to use a hot blow dryer to dry herself off. Consequently, she is burning a lot of holes in her clothing].

I quickly ran back to her room to unplug the blow dryer, much to mom’s dismay. As I turned around, I caught glimpse of mom’s toilet…and a huge clump of red hair floating on the water; it was a good amount of hair. My eyes widened in horror as I turned to mom.

“Mom, you cut your hair!” I exclaimed.

In a bit of shock, I ran my fingers through the back of her hair, noticing the huge chunk that had been cut out above her neckline. Annoyed that I was touching her hair, mom mumbled,

“It’s so hot too, I cut this here,” she motioned to the back of her hair and towards the toilet, where she had discarded inches of her hair.

Mom’s new A-line:

She doesn’t quite understand why it’s not curling so well back there. I wonder…

My Uncle texted me this morning to relate that my Aunt had found yet another clump of hair in her bathroom toilet upon their arrival. I think we know what needs to be done…hide the scissors!!

Don’t Forget Me, Grandma

It’s been kind of hard for me to write lately. Not just because I was finishing up summer break with the kids, but because I’m kind of at a loss sometimes of what to write. Lately, every time I see mom, it seems as though she’s slipping farther and farther away. Her hair and make up continues to get worse and worse (I didn’t think that was possible) and her speech is more and more slurred together. Since she talks about the same 5 subjects over and over, I can usually make sense of what she’s talking about; but for the average Joe listening to her it’s hard to understand what she’s saying.

Last weekend, the kids and I went over to mom’s house. My daughter (9 years old) had gone back into grandma’s computer room to say hi. She came back to me in the living room, a few minutes later, with a somber look on her face. She looked up at me and from behind her purple, wire rimmed glasses I saw a small sadness in her eyes. With her lips slightly turned down, she looked up at me and quietly said,

“Mommy, grandma doesn’t remember me. She thought I was Marty.”

[Marty is a lady from church that we’ve known for almost 30 years…I don’t know if that’s who she was thinking of, since church ladies come over every week to help, or if she just mixed up names.]

“Did you tell her who you were?” I asked, my heart aching for my little girl that her grandma didn’t recognize her.

“Yes, I told her I was Aubrey and then she said ‘you’re Cassandra’s daughter,” Aubrey replied.

I hugged Aubrey tightly and tried to reassure her,

“See, she remembers you. She just got confused for a minute.”

Mom does get confused and after some explanation, she will sometimes remember who people are (particularly our more immediate family). But I think the days are numbered. She seems to un-recognize familiar faces more and more often; now with her own grandkids! In a couple of weeks, I will be taking my niece-daughter away to college in another state. She’s already expressed her concerns that grandma probably won’t remember her by the time she next comes back to visit. :(