The " Patient ", caring for the " Patient "

So, I had a Phlebectomy yesterday, and came home with ace wraps from foot to thigh. It did hurt, not horribly, but hurt nonetheless. Now the other day I shared our emotional exchange, and my goal to not let my grandma worry, but in that exchange, I had let her in my pain for a moment. However that day, it was a personal, & deep exchange discussing love,loss, and the pain in your heart. My now throbbing leg, was not the same ! So when I walked in following my procedure, I was escorted by a friend, which made my grandma so happy because she was able to see a glimpse of the amazing support system our family has. But once Jen left the concerned face, with her iconic furrowed eyebrows began. " Z.Z that looks horrible you must be in a lot of pain ?! " No grandma, actually it feels pretty good.  " Really ? " Oh yes, the bandages are for pressure, and that's what keeps the pain away, you know from your P.E days what a wonder they are. (Her big smile remembering being a P.E. teacher ) " Oh yes, that would be right wouldn't it, those simple bandages do a world of good. Now how can I help you ? " Now the books, home health nurse, and her Dr. have told me I NEED to make her feel useful, she needs to KNOW she is needed. Now here is the tough part, we were all taught as children to respect our elders, to do for them, help them, mow their lawns, etc,  but yet here I am . I am supposed to ask my 89 yr old Alzheimer's grandma to  fold my laundry .......... big mental hurdle to be jumped here. Everything I/we were ever taught has to be re- aligned. Well grandma, I do have one load of laundry  you could fold . ( Her brow furrows ) " No ! How can I help my sweetie, what can I do for YOU ? " ( Thinking really fast )  Well grandma, the arch of my foot is a bit numb from being propped up, it would really help if you rubbed it. " Oh yes, now that I CAN do " Her look was so intent, so motherly as if I was 5 again, and had fallen off my bike, and needed an owie rubbed =) I included the photo below. We make quite the Duo actually, I lay their for a bit smiling, and she sits their contentedly, knowing that she has helped me, in some small way. I am up a bit more than the Dr. would like, caring for my grandma during this small recovery, but I doubt I will die from a little extra leg pain.I'm figuring out, that it IS possible to be needed, and need at the same time. ~ Z

gma ask Enoch " what was the high of today ? " Well my day was boring ! " That's normal, but what was the tempature ? " :)

Special moment of grandma teaching Elias

My Grandma, the ETERNAL teacher !

My son, had just went online to PBS.ORG & looked at a " how to guide " on how to draw one of his FAVORITE cartoon characters Arther. He came in and showed us, and frankly I was astounded, I had never seen him draw like that, and neither had my grandma. My grandma said " Bring your drawing over here for a minute, I want to show you something." When he did, she grabbed the pencil as if it was 30 years ago, about to correct a paper, and she says " Now it's important to ALWAYS sign your name to any paper, or work you do. " Elias shows off a bit, and writes his name in cursive which was self taught. She leans in, and says " And when it's REALLY special like this one, you can do this." She then drew a big heart around his name, Boy oh boy did that ever make my son happy =)

He starts to get up, when she says " Oh no no you aren't finished yet. " Elias looks puzzled and said " I'm not ? " again, the teacher comes out and I marvel at how Alzheimer's can take MANY things away but teaching was so much apart of who she was/is, that it is VERY apparent. she says " Now you can't just sign your name, you need to write the date at the top. " Elias smiles, and said " Would it help if I put the time down too? " She winks at me, then at him, and says " Well sure, nothing says you can't do that "

So, below is the picture, it might as well of been Picasso for all the attention we gave it =)

But it was truly a special moment, because in that instant, she was not just an " Alzheimer's patient "

She was a grandma, great grandma, and a teacher.

Now was I lying when I said this is good ? I think it is, but alas I am his mother =) ~ Z

A very special moment

As many of you know, we lost our twins sons Ezekiel, and Lucas 3 moths ago. It was hard to navigate that with my grandma, for as long as I remember she had been my confidant, my listening ear, the one that would tell me it would all be ok. However as her disease has progressed, I have been very careful to not worry her, becasue it upsets her. Example, once when she called I had horrible Bronchitis, and I couldnt hide the coughing, she was INSTANTLY worried, but I told a white lie, and said " Oh it's, only allergies " which instantly made her feel better. So when my mother told her we had lost the babys, I of course got calls daily from her. I would see the phone ring, pause, brace myself, and put a smile on my face ...... as if that would somehow be seen through the phone. Now I would never lie during that time, I was just selective, so when she asked me how I was doing, I would say " Oh grandma, I have such an AMAZING support system, and Im really relying on my faith, and am reminded daily of the blessing that my son is ! " Now that was the truth, however I chose to leave out the part that night after night I was sobbing with an intensity that I couldnt even from the words, all I could do was cry or moan. And that my heart and womb ached for what had been lost, dreams nightly of the men I would never know, a full thanksgiving table that wouldnt be. So when I did tell her these positive things she would say " Oh honey, thank you, I NEEDED to hear that, Im glad your ok. " And so this whent on for weeks, her calling, me putting on my brave face, all the while desperatley wanting to just sob, and tell her all about it, and have my grandma from 10 years ago back, the one that would assure me and tell me it would all be ok. But I didnt, I thought being a good grandaughter is not giving her added worry that she does NOT need. So yesterday I was caught off guard, becasue ussually her questions are general, such as " How are you doing today " , and they are over the phone so you can mask your true responses. (( Im going to put the exact dialogue so I will only put "" marks when shes talking.)) " Z.Z. , can you come over here for a moment, I want to ask you a question. " Sure grandma ABSOLUTLEY , but then I notice her intense gaze, and I wonder what this is about. " I have noticed in your scrapbooking room you have things lining the walls, and stacked high, but you have one place under your window empty, why " Ok, so Im thinking should I tell her, where will this end up, if I get teary I wont be able to hide it. But their was somthing differant she was leaning in close and gazing very intently at me with a very DIRECT question. Well grandma, we bought this house, after we lost our son Matthew, and it was really hard to stare at an empty room when we all knew what could of/ should of filled it. My counselor encouraged me to make the room into somthing so it wouldnt be a constant reminder of what I DONT have. " Thats wise, your very smart to get counseling " ( side note she used to be a school counselor ) " But you still havnt told me why you have one wall empty ? " Well grandma I was fine fillling the room, but I wanted to make space for my hope so that wall will remain empty leaving room for a crib. " That makes sense, it is important to keep those hopes we have alive, isnt it ?" " On that note I cant help but notice how well you have done, you lost your babys a few months back but your so peacful, at least from what I have seen. " " Do you have moments, when you arent, now be honest with me " UH-OH be honest ?? How honest ? What happened to being a good grandaughter means sparing her from hurting for me ? But this was not somthing I could hide, she was still intently looking at me, as if she was trying to read my heart , and soul. Grandma no, I am not always like this, their are days like today when I have a rough patch. " Really what happeneed today ?" Starting to well up with tears at this moment, trying to not break down into full blown sobs. Grandma I whent to TJ Max, and I passed by a diaper bag, the PERFECT diaper bag ! I had been looking for one, days before , well actually THE day before I lost the baby, and I couldnt find the right one, I wanted a pretty one " she smiles " I wanted one that could pass for a purse. And today I FOUND THE ONE ! It was normally $ 150.00 high end bag down to 59.00 it was leather with flowers. " So what did you do with it " I stood their and cried silently trying to hide it from other customers clenching it thinking that it SHOULD be mine, I should be needing it soon very soon but instead I didnt. I wanted to buy it anyways! " So why didnt you ? " Well their is a fine line between buying things for my hope , and dream, and moving on and saying " next time ". See grandma I have alot of stuff . " What do you mean ?" I have a hope box of baby things I have bought along the way, and maybe if the bag had been $ 30.00 I would of bought it, but I decided I had better wait, not smart without a job to buy somthing you dont NEED. " So then what did you do ? I dried my tears and marched my way over to the purse area, and bought myself a sparkly $14.00 purse ! =) " See thats why your so peacful ! " Hey wait a minute what ?? Crying, and loosing it over a diaper bag at TJ MAX is peacful- of course thougth in my head didnt say that part out loud. " Z.Z. you could of continued to cry, and ran out of the store, but instead you put your chin up & got a purse " " See I think youve figured it out, it hasnt been easy but watching you, I can see youve found a way to live & move on in a peacful manner " Thank you grandma ! I love you ! " I love you to, I ALWAYS have. " Z.Z. , you mentioned a hope box, do you mind if I see it ? " ( At this point my cards are on the table shes seen the tears, and shes not visibly bothered so I decided to show her ) Sure grandma, just a second. I put it on the table , and she just smiled, she said "I notice its all pink "~ said with a wink. Yeah grandma running theme their huh ? =) She pulls them out ever so gingerley first the little beaded size 2 mini pink ballet shouse fit for a princess, her smiles getting bigger and more frequent, then my garage sale fine of a smocked pink frilly thing. she turns to me, and said " You know I always knew you wanted a baby, that was obviouse , but I guess I NEVER knew HOW much it meant to you. " This really is a hope, and dream for you isnt it ? Yes grandma it is, I also feel its a promise in my heart, I dont know what more I need to go through to get their but I will, I know it will happen. " I think its great, Im glad that wall is empty, and I am so glad you shared your box of hope with me. " " I dont know why this keeps happening to you, but I know your a good gal, and you are really lucky with this kiddo you have here. " " I think after listening to you I think it will happen for you too, just keep your head up youve done great, and jsut keep that peace. " Thank you grandma. " Isnt it nice to talk about it ?" Yeah it was nice, sorry about the tears grandma. " Honey it's ok we all need to from time to time, the point is is you go forward, and that what your doing.  I willl NEVER forget this conversation as long as I live. And since I talked about that stupid tear inducing bag I am posting a pic below , SILLY SILLY ~ Z

Thanks alot Mr. !!

To help grandma stay in touch, my mother sent postcards to all of my grandmas friends, saying she has moved, and included her new address. However today she got her FIRST letter back from an old colleague, you should of seen the JOY on her face, its was priceless. It showed her that her friends had remembered her. However that look of joy left instantly as she read, so I asked her if I could read it with her. Her Friend had somehow thought it best to tell her that his wife died last year of Alzheimer's, how horrible the disease is, & how robbing it is. She kept shaking her head saying " This is bad , this is bad , this disease really is HORRIBLE isn't it ? " Now I'm racking my mind thinking WHY, WHY, WHY on earth would you send THAT letter to her, it broke my heart. I'm miffed, I'm pissed, I could go slap the man ~ then hug him for his loss, but still WHO DOES THAT ? If I was a bear I would be growling right now ! Grrrrr  ~ Z

Her paintings in place, our house is now her home

Well, this wont be interesting to those of you who haven't seen my grandmas special wall hangings your whole life, but for her family, knowing Opal is to know her lovely taste in fine paintings, and wall  decor.This post is for you =)

1. These are her two favorite paintings done by a friend

directly above her antique oak sewing machine, with her collections of pins. She has ALWAYS collected pins, and they are all so ornate & different.

2. These are the two matching pictures of my mom & Aunt in high school, as long as I have been in my grandmas home they have been hung. I love them!

        3. The third is by the same friend & they looked great on either

side of the coke bottle vanity that is in her room.

4. This is the window view directly seen from her bed =)

Enoch got a bird feeder, and Elias & he will paint it,

and put it out so she can see birds while lying there

5. The last pic is her red wall with matching gold and red

drapes, that match the gold and red bed spread. We already had all

of that, but notice on the left her Gold wall sconce

 she has had it forever, and with us hanging one on either side

it looked made for the room! All we need, is red candles with gold swirls =)

Well their you have it her/our home. Today made her VERY happy, and it made me happy as well, by having her pics hanging their it reminded me of visiting her back when she was just grandma, fast walking, sport car driving grandma, I felt as though I got a little of her back today !

The first shower

When my grandma moved here, my mom came as well, so my mom, naturally bathed her. Now that my mom is gone, today I will bathe her for the first time. I have a myriad of feelings, some fear, & some worry that I wont do it right, but mostly I feel bad for her. She still, very much has her mind, that will go slowly, its her body that is failing her faster. I'm stricken with what she might be feeling, how does it feel to be a grown woman, & have someone else bathe you ? Maybe she thinks nothing of it, but she was such an independent woman, is my bathing her a loss to her ? Is this another step on the journey that she will grieve the loss of ? I'm afraid to ask her, in case she hadn't thought of it already I don't want to put my fears into the situation. Anyways weird blog topic I know, but I want to capture all of it. ~ Z

Tours, and dog transformations

So, this is my grandmas Maltese puppy, she weighs approximately 2 pounds & yet she has dubbed herself my grandmas protector. It's rather cute actually she has no sense that nothing about her would bring terror to an intruder, but hey we will enjoy watching her think that. (( DISCLAIMER )) I did NOT cut this dogs hair, it was to my mother & grandmothers horror that they paid money to have their thorough bred Maltese chopped as if a 2 yr old had done it. But with the move, and many things going on she got dirty, and her tears were stained which is common in this breed. Grandma kept saying " poor puppy, poor puppy, you look as though no one cares for you " I decided to open Zaundia's salon, while she was sleeping I brought the dog downstairs, stuck her in a large sink...... much to her dismay, and scrubbed, and scrubbed some more. I went and bought her a rhinestone name tag with the dogs NEW address, and a cute pink collar. Now I could NOT find a little bow, so I had to use an adults bow, but hey you work with what you got( it lasted as long as it took to take the picture ). When grandma woke up you should of seen her smile, she hugged me, & the dog and said " she's white again, she's white again. " And the PINK additions were NOT lost on her, she loved loved loved it. I felt like I had bought her a brand new car, it was a good day ! The dog is white, with a pink collar, grandma is happy, & we finished the day off with a drive around the city so she didn't feel like a visitor, but rather a resident. The nice part about that is,6 she had no need to get out of the car. She remarked the whole drive how green, clean, and how gorgeous Duluth is. After that, I hung her pictures on the wall, letting her know this is HER home. The newly cleaned dog, and grandma went to bed with big smiles, and I find myself having one myself. ~ Z

Tid bits, & special moments

So today their is no REAL topic other than a few stray thoughts, pictures, and moments I wanted to share. I thought why not just post them, all under one !! Here is a picture of our stairs, we have lived here ONE year, and their have never been any plants, but I wanted to brighten it up for grandma. We ended up plantning them the day before she moved here! However today I was struck by the irony that the pots line the stairs that her body can no longer navigate ......

I love this picture ! I was walking past her and she said Z.Z. look here, look how Snow ball ( the dog ) is cuddled between me, and the couch. But don't worry Z.Z. she will like you eventually =) Oh I love my grandma, she felt loved by the dog but didn't want me to feel left out of that love. Then, my favorite moment of the day was was when  I was scurrying around this morning cleaning, getting her meds, and giving her lotion. She grabbed my hand as I was walking by, and looked at me and said " Thank you, I love you so much " Oh how I needed those words, I mean I know she loves me, but it was how she reached out and grabbed me, it was with an intensity & strength that she often is unable to muster. It made it so special, to know that she HAD to tell me in that moment. I need to remember to do the same, to touch her more and tell her the woman she is to me, & how much I love her. Their is something to be said for a verbal exchange, along with a physical act, or touch. I am not very new age but in the Hindu language they use the word Namaste often, in the exchange you have to hold your hands together and slightly nod your head, while saying Namaste to the other person.The word actually means " The Spirit in me, respects the spirit in you" I am not a yogi, or anything other than a Christian for that matter, but in that moment when she grabbed my hand & locked eyes with me, it was so powerful as if to say my spirit, my soul, & my heart respects and loves all that you are. You would of had to have been there. Have any of you had an exchange like that ? I need to work on that in GENERAL, giving more purposeful gestures of Namaste. So on that note tonight my prayer is to love, cherish, honor, and be kind with a profound purpose so that the people I encounter feel the intent of it, that they themselves are drawn aback like I was, and maybe reach inside themselves to want to, & need to go deeper in life, friendships & faith. God is who will help me with this, so I will purposefully pray these things tonight, and thank him for the gift he gave me today.

Papers, papers, and YES more papers

Wow, my mind is still swhirling !! My mother is here for a few days before she takes my son on a whirlwind trip to Washington DC, so this gave us a  mere 2 days to switch over all of my grandmas info to my care. Oh if it were just a letter stating Zaundia is now in charge, but nope not that easy, why would it be ??
The list to do
1. go to Walgreen's set up Hippa permissions, for me to get meds & get info, have the address changed to Duluth, and set up for auto text alerts for her refills .... easy enough
2. Go to Dr. office to get a Minnesota advanced medical care directive, go over it with grandma, try and restrain your emotions as you write that you don't want her to have CPR, and finish the rest of the form, without tears knowing that you just NEED to do this.
3. Call Neurologist to set up consult & give them her med info & insurance info
4. Go BACK to DR. to pick up a DNR & DNI form as well, as give them her insurance info & med info, and make an apt.
5. Drive to Court house, stop in FIVE different offices trying to find where I can get a NEW Power of attorney form, by the fifth office I was near tears. The lady looked at me like I was nuts to be so frazzled over a tiny form.
6. Go to bank to switch signers & beneficiaries only to find out that we can only do that AFTER the Power of attorney has been filled out, which is not legal till we get it notarized.
7. Google all address of old Dr. to fill out medical release forms and mail them.

I'm sure I grew gray hairs in the process, but I got allot done, if it was JUST paperwork it would still be hard but this is someones LIFE ! Decision's of care for her life and death all in my hands ( at least it feels that way )... still cant wrap my mind around it. On a POSITIVE SIDE NOTE  we found a wonderful lady at our church who will come to our house so I don't have to move my grandma, and notarize the forms with witness for free, so we can hand then over to the Dr. on Monday.

You don't understand, I know I didn't! What it looks like, when you look the person you love in the eyes, as your discussing their mortality, knowing that their days are numbered, and you aren't promised anything, none of us are but her for sure, and the quality isn't either, you have to emotionally remove yourself for a moment because it needs to be done, but at the same time you have thoughts running in your mind, of the gravity of it all ! My God this is not just a paper ! This will happen, I know its her wishes but I am the one legally, well Friday legally, to enforce it. God is in control & I know that,but I don't like the control these small papers seem to hold !

I talked with a friend today who is in med school re my grandmas DNR & DNI, he was such a help, and reinforced that these are her wishes and I need to view them as such, he's a wise & compassionate man,he seemed to know the questions, & fears on my mind. I am grateful for him & his wife they know who they are, they have been such great frineds to us, I pray in all this busyness we can be the same to them. Gosh I could write more but I have no more words..... today was tough! I ran around all day with a tear stuck in my throat, and I am going to bed with it still there. Blessings Z

Juggling

Well it was real today! My grandma flew in with one piece of luggage , a walker, and her wheel chair. Now if you think new moms have it tough you should of seen my pitiful attempt to juggle it all. I know it was  pitiful mainly from the looks of passerby's........ the looks of "oh you poor girl" , it made me sick actually. Isn't this what we should do ? Help our elders ? Finally an elderly gentleman who obviously knew the ropes quite well apparantly, showed me how its done. He quickly spread her feet, put the luggage between her legs, showed me how to fold the walker to wear as my backpack, all the while pushing the wheel chair. Woo hoo, I get tired just thinking about it, but mission accomplished ! Its one thing to hear she will need a wheel chair, but it's quit another to navigate doors, restrooms, and inpatient people. Regardless of the small fiasco of tangled metal, it was WONDERFUL to see my grandma, the Alzheimer's may of stole many things, but she still has that glimmer in her eye, the sparkle has faded but it is still there nonetheless , and THAT gives me hope that she IS still in there. The following might be selfish but I'm writing it anyways ! I did cringe when the back seat of my station wagon was filled with a collapsed wheel chair, and a walker, that was supposed to be for my TWIN sons strollers !! How quickly our plans can change. I love my grandma dearly, but I will not say that I don't wish it could be filled with strollers & diaper bags ... signs of life growth, & hope. Not signs of aging, and deterioration, I felt two losses in that moment. The death of my twin sons so sharply & real, and the death of the grandma I knew, the one that used to walk faster than me & drive a little silver sporty car with the top down..... with NO trunk space for any wheel chair, except an occasional golf bag. Dam those metal contraptions & dam death, & deterioration, there I said it. I am MAD. mad as hell with the realization that I / we get to mourn two things. I am however stricken by how much like a baby she is, she is not the baby that was in my womb, but I did tuck her in, changed her, and even checked on her while she lay their sleeping peacefully. These are the moments I am doing this for, the quite glimpses of the woman I admire, the faint fight that she still has, and her peaceful gaze as though she has accepted the fate that I have yet to accept. I will try and focus on those moments of peace for now.

Today is the day

I should be on on my way to the airport, but no. I want to capture all of my thoughts right now. The name of my blog is grace-appears, and its only named that because grace like rain was taken :(
Long story short I LOVE the song ( Grace Like Rain) I find myself listening to it often, in fact at the end of this post I will put the lyrics. This morning as  I was scurrying around making sure everything was tidy for grandma I found myself having the oddest fears. 1. will she accidentally use Elias tooth brush? 2. Will she not want to watch the view with me , its my one stay at home mom guilty pleasure.... forget soap operas the View is it ! 3. am I gong to have to explain that she should wipe front to back and not vice versa to avoid infections, this is a grown woman after all, who by the way change my diapers. 4. But the biggest fear, is my fear of alienation from friends, I love my friends & church so dearly and I don't want to have to choose! ,maybe I am being dramatic and it will all be copacetic, but that's the worst ! I DON'T KNOW how any of it will work , the unknown is always scary but this effects, my son, husband, me, our household, and the outreach I feel God wants me to do in our church. However on a  positive note...... I know at this point you were wondering if their was one =) I met with TWO wonderful woman one, is Lynn who heads up the healing prayer team, if I could legally adopt her as an aunt I would! With our without her permission ;) Her prayer for me was that the Lord would go BEFORE me, man what a truth that I needed to hear, and need to REMIND myself of, we prayed about taking her into our household... not Lynn although nice, but my grandma, so wouldn't it make sense that GOD would go before me?? I need to put that on the fridge, the bathroom you name it, only grandma will prob be confused seeing as how I told her I would put notes on things like cereal pantry, she might wonder whats behind the door that says " The Lord will go before you " that would be pretty cool to open =) The second AWESOME encounter was Jolee W. she recently took care of her mother in-law with Alzheimer's and has to small boys, she reminded me its ok to be mad or frustrated, and that it doesn't make me less of a christian. For some strange reason I thought my blog should be all the triumph & glory of it all, and maybe some time it will, but you know life is REAL, and their will be struggles, So Jolee if you read this THANK YOU!! I should probably go, since she should NOT have to wait at the airport. ~ Z       p.s below is the song

Amazing grace, how sweet the sound
That saved a wretch like me
I once was lost but now I'm found
Was blind but now I see so clearly

Chorus:
Hallelujah, grace like rain falls down on me
Hallelujah, all my stains are washed away, washed away

'Twas grace that taught my heart to fear
And grace my fears relieved
How precious did that grace appear
The hour I first believed

Chorus

When we've been there ten thousand years
Bright shining as the sun
We've no less days to sing Your praise
Than when we first begun

Chorus

Chorus

5 days left

So five days till I pick my gramma up from the airport. Today I am NOT as worried as yesterday, but only because I am stricken by the futility of it, or my efforts to correct it. I woke up from little sleep with a swollen face and pounding jaw ..... yep infected tooth, I had to laugh. Get everything ready, have some time as a family before she gets here, and somehow deal with this, got to love it. I called gramma today and talked with her for 1 hour, we talked about Duluth, and our house, she was very interested and sounded much more at peace like she was ready for the move. We discussed everything from population to the primary ethnicity of Duluth. She was surprised to hear that a town of 80,000 had few african american people but not as suprised as when I told her or house was only 980 square feet ! Monday is coming all to fast, so I best get off the computer and get to work.