Round 2

We took mom in for a 2nd opinion this week. That was hard. REAL hard. She is staying at Silverado - and I love them. I think they make her feel dignified while she is suffering a disease that has caused her to lose all of her dignity. She doesnt seem as mad there - she has her days - but she never seems as angry as she seemed at Arbor House. I think the personalities of the care staff have really impacted her. Anyway - the 2nd opinion was hard.
Shannon & I both went to take her to the doctor. We got in the room with the doctor and the doctor asked us about her. Its hard and I think very belittling on mom's self esteem for us to tell the doctor all of our concerns...mentioning all of the things that she can not do - all of her nuances. Then mom has to do these tests - - and I can't help but wonder if she does worse on the tests after hearing the spill that Shan & I just gave. We both really wish that the doctor would talk with us first outside the room then talk to mom separately.
All of this to say - the doctor's diagnosis this time was Alzheimer's Disease. She didn't think it would hurt to order a CT scan, so she ordered that and we go in for that next week. All of this is just so overwhelming - I'm glad we are getting the CT scan & all, but man with everything else going on all of the time...its just rough.

Update

Time flies by lately - kinda forgot about this thing between being slammed at work and trying to keep up with what I call "mom stuff"...but I guess for an update...
we moved mom this past month to a different assisted living facility. We found a new facility in the area and they just seemed to be able to help her needs more. I think this was the easiest and most comfortable move for her! They helped us soo much - from packing her up at her current place and moving her to her new home. It all happened so quickly and the whole staff has been sooo helpful. Mom seems to have adapted well. She always seems to be doing okay when I go see her.
We are working with an attorney to get guardianship of mom. Scary stuff. We are working on the contract and getting the ball rolling - it is such a hard and scary process....and expensive too.
Sad news: I showed mom a picture of herself, her sister and her mom when she was growing up - she was a teenager - she recognized herself and her sister - she did not know who her mom was. Even when I told her - she did not sound convinced that she knew her. That has honestly been a very hard thing to deal with. To know that it is coming; there is a day coming when I will walk into her room and she will have no clue who I am. Every day that passes is a day that I am closer to that day. Its a very sobering, gut-wrenching and heart-breaking thought - and to know that it is most likely going to be a reality in my life. Scares and hurts me more than I think I can convey.
I've been down here lately. Lately it seems like it is just hard to move - I make way to eventually do it, but man is it ever a fight. I have cried more this year than I think ever - change the cry to sobbed. Its really weird, some days - watching mom go through this - makes me realize that life is so short and I need to make the most of it and live each day well - through the way I interact with others and the things I do each day. Other days it is just depressing enough to make me not want to move. I feel like I always alternate between these two extremes.

A Moment Never Forgotten

It was December 25, 2006, after all the Christmas festivities. Mom and grandma had come to mine & Shannon's apartment for the holiday. Mom & I got along exceptionally well the whole weekend. Since I graduated high school and moved out, we usually got along pretty well, but this weekend was just different. We clicked in a way that we really never had clicked before. I think we bonded through planning the meals and weekend together, shopping for the ingredients and then cooking all weekend together. On Christmas morning, we all slept in, then mom and I cooked breakfast and then we all sat around the living room, opened gifts, watched movies and did much of nothing. Evening came and we continued to eat and lay around and watch tv. I had to work the next morning but I really enjoyed this weekend - it was a precious weekend - one of those where you knew it at the time - so you just cherish it. Anyway, I stayed up later than normal, because I knew that I wouldn't get to spend much time with mom after today. Mom & I stayed up watching tv together. I remember laying with my head on her chest while on the couch. We were laughing at late night television together. I could hear her heart beating and I just knew it was a sacred moment. I heard the still small voice tell me to drink in these moments very slowly and very deeply. That this moment wouldnt last forever and that she would soon go back home. She was usually very depressed but this Christmas weekend she was not. We laughed a lot, shopped, ate...a lot, cooked together and truly enjoyed each others company. Laying together watching tv and bonding seemed the perfect way for the weekend to end. I remember listening to the rhythmic flow of her heart beating. I remember listening to the voice that told me to cherish it, that wouldnt let me pull away from her - knowing that things would not always be like this. In a small but weird way that I've never wanted to admit and I am scared admitting it now, but even that night like that again. Like this may very well be the end kind of way. It was scary to feel that way - but I think I just shrugged it off - like the I'm being crazy...but if I'm not then I'm so thankful that God made me aware in the moment of just how special that moment was.
Mom is still physically alive today...but she is very different. She is easily confused, can't get all of her words out, convey how she feels or what she is thinking. I often remember this moment. It was not the last Christmas that she was lucid...but it was one of the last.
As for now...I just miss her...real bad lately...

Tell Me Lies Tell Me Sweet Little Lies

You know how when you were growing up, your parents taught you not to lie. I mean, we all did it, regardless of what our parents were requiring. About 4 or 5 years ago, I just got to a place where I just didn't want to lie anymore. I want to be a person who is completely honest about everything - call things what they are. I don't think that I have mastered this skill - actually feel I'm very far from it, but it is still what I want to be - - a person who gently, graciously calls something what it is. I have found freedom in being able to admit how I really feel, what I really think and just be honest. I have found some healing through Christ by being more honest about who I am and what I think, what I feel, what I struggle with. Slowly, I am wanting to be more honest in relationships (i.e. tell someone when they hurt my feelings - - VERY HARD to do - I'd much rather sweep it under the rug and go on,) in how I feel and what I think. As I imagine my future, I want to trust the Lord to show me how to continue to break this stronghold in my life. If I have a family and kids, I want it to be honest about all things - even on holidays. I know it is naive to think that - especially not having kids right now, but its what I hope for. We'll see how that plays out later...not making a vow to do it - but you can bet I'm going to try my hardest.
Well, with this being a hope for my future, mom having dementia has made me have to learn how to go with what she is saying - even when what she is saying/thinking/doing doesn't make sense (and most of the time, it doesn't.)
Rule #1 in dealing with a person with dementia: They are never wrong!! Where they are in their head, is where they are, and us who can adapt, have to adapt..because the person with dementia can not. Arguing with them makes them angry because, well they are right. So I lie to my mom - - often. Not very conducive in helping me to be the person I ultimately want to be, but this is not about me. I mean I've lied to my mom - a lot - because, well she's my mom - she raised me. When I was younger, it was to avoid being in trouble - which didn't work when she caught me. As I grew older, I lied less often, but when I did, it was more to protect her - to keep her from worrying about me. But this is a different kind of lying - because in her head, I'm not lying. It is similar how we lie to children - "yeah, we'll do that later; no I haven't seen him; oh I know who/what you are talking about."
I've worked with children a lot the last six years. I've "talked" to babies and toddlers and preschoolers...its really weird and heartbreaking talking to my mom the same way I talk to preschoolers. Its awkward when I get called at work from the assisted living place asking me to either bring her stuff or asking if its okay for her to do something. I remember back from my childcare days making similar calls. Its just weird, and hard, and devestating...and I feel so ill-equipped.
I pay my bills and I pay her bills. I try to take care of her house and her stuff and her; when most of the time, I barely know how to take care of myself. I miss her - like really bad. I miss being able to call her and tell her what I was thinking and feeling and listening to her take on life. I never thought I would miss her criticism about everything...but I do. I always thought when I had to go through something like this, I would have been through it with my mother; not that I would know what to do, but that 1- I'd be older and 2- that'd I'd have seen more and know more.
I've cried more these last 2 months than I have in about 20-years...well maybe not quite that long - but I've cried more than I usually do - not a big crier...but it happens occasionally...well lately its often.
I celebrated my 27th birthday this month...she never knew that it was my birthday. It probably wouldn't have been so bad, but mom always made a bigger deal of my birthday than I did. She always went all out on our birthdays...this year...she didn't even know. I cried and grieved and mourned that I would never really celebrate my birthday with her again (at least not with her being cognizant about it) and the fact that she missed my birthday - and am blessed enough to have a friend at church who told me it was okay to be sad about that and grieve that.
This has been a really hard ride...its made me appreciate life more...its been really difficult, tragic, and heartbreaking. The role reversal with mom is insane - nothing can prepare you for that. I am learning more and more each day that life is short...don't waste a moment of it with silly things. Embrace it, become who you want to be, tell the ones you love that you love them and let them know that you appreciate them. Be honest with them - about who you are and what you want to be. I'm still not good at this - but maybe I can start to take baby steps...and we'll see how it goes.

Is it already mid-June???

I don't remember what was going on the last time I updated. Mom is doing pretty much the same. It's weird how the days go - actually the moments. She can be completely content one moment and then a moment later she gets focused on something and man, is she ever on a mission then. There is no distracting her, no changing her mind, or even the subject. She packs up her room often. Its funny, sometimes she just packs up like half the room and other times, she packs the whole thing up. We met with her care team yesterday to go over her ISP. They went through her whole day with us - what that typically looks like - and all the details involved in taking care of her. We changed some things that they are doing - we'll try that and see how it works. We asked them if we could get her a cat and they said of course - they even think it will be a great idea since she is a nurturer. Sister got a cat yesterday and we are getting him checked out and all the necessary things done and then she will hopefully have him after this weekend.
We are also working on some legal issues that we feel is best to get taken care of now. I met with mom's financial advisor this week and just went over everything again, and made sure I was on the same page as him, and also to make sure that I was aware of where her monthly retirement income was coming in at and how all of that worked. I feel a lot better about all of that...
I'm nervous right now, selfishly, of course. My birthday is the day after tomorrow and its just going to be weird with her not being the same. She forgot my birthday last year - so I kind've had a taste of that - but I guess now its official that it will always be this way. Last year everything seemed like it was still possible of getting better - but now knowing that it probably won't - its a little different. Sometimes I think something is missing because she used to seem more excited about my birthday than I did. But I'm excited about it...I have plans on my actual birthday this year and I'm excited about Friday night. A lot of people are coming and everyone seems really excited about it - so I'm hoping for a really fun night with friends to celebrate another day.

My May Entry

So...I almost managed to make it through the whole month of May without posting (shocking.) It really is hard to remember to write in this thing.
So, mom has been in assisted living for just over a month and well...thanks to family drama - it does not seem that she is doing too well.
She was doing okay and then some family drama has entered into the picture and she seems to be doing worse. Its frustrating to see her like that - makes the whole situation even worse. I don't want to get into it, but the most frustrating thing for me is seeing that my mom is not participating and getting the care she needs due to this family drama - so she is suffering even more. So...that's where we are...if anyone reads this and wants to pray the family drama will subside, that'd would be a huge help. So this is all for the month of May - short and sweet.

Will this knot that is in my stomach ever leave???

I don't know how to start this entry or exactly what to say, but here goes...
We moved mom into Arbor House on Tuesday afternoon. We told her that she was going there for brain therapy. We got there, unpacked her room and set the rest of her stuff up. She started to tear up and told me that she thought that this was a rest home. I told her that it was not a rest home. Shan & I told her that we knew it was scary and that we were a little scared too but we knew this would be the best for her. She sat on the edge of the bed and told us that she wanted to leave. It came time for us to go and her favorite soap was coming on so we both hugged her and told her that we loved her and would see her soon. It was so hard to leave her there...words can't express how hard it was to see the terror in her eyes as we left her in her room.
The rest of the day was really hard. I called up there towards the end of the work day and asked how she was doing. They said she was doing fine - was eating dinner at the time that I called. Here is part of what I wrote later that night:
I wish I didn't hurt so bad. I wish things were different. I wish I didn't feel like I've betrayed her. I hope she isn't scared. I hope she gets better - that they find a cure for this. I think today is easily the hardest day of my life. I hope she meets new people and makes friends.
It really has not become easier. It still hurts. I feel like we have made the right decision - the healthy decision to adequately take care of her. But that being said - its not more difficult...but it is just as difficult today as it was Tuesday. I really hope that she is okay. I know that she will never truly understand if a cure for the disease is not found in her lifetime. But I think that if she were in her right mind - she would want the adequate care and would do the same thing that we did.

Cliche

I still am experiencing grief. My heart is heavy, but I think pain is a good thing. Pain forces us to seek help; for me, pain forces me to seek God. I love Jesus and I love the Bible. I love reformed theology - wish I understood more of it better; but what I do know of it is a warm blanket to my soul. I don't know that in this situation, I've ever shook my fist at God. I know that He is in control of all things; and I believe Romans 8:28 with all my heart: "And we know that for those who love God all things work together for good for those who are called according to his purpose." I know that He is working all things together for good and I truly believe that all means everything from the tiniest molecule of something to the biggest part of it; God is in it and working in it.
I identify with Job who after he lost everything, in a matter of seconds, his whole family (minus his wife); all his livestock; land; everything said "The Lord gave and the Lord has taken away; blessed be the name of the Lord."
But when the deep stuff happens; when the surgeon makes the cut; the cliche sayings as great as they sound in writing and as beautiful as they look on a painting or coffee mug really do not do what they do when you are not going through the pain. They are great and some of them are even true...but they do not do justice to the pain. I have to confess that theology while for me usually better than the cliche sayings still leaves me hanging knowing that the pain is there.
I know we tell others this because we are trying to comfort them; and I know I've done the same before; but now experiencing the pain myself; as great as the saying is and how true it may be, it does not comfort. Only One can truly comfort; Only one can heal...but we do need each other; we do need those in our paths who walk through situations with us, who just let us say what is on our heart and are there to offer solid scripture and Godly wisdom. I know it hurts to see other people go through pain, but I think God teaches us through our pain. The song in my heart right now is Jennifer Knapps Hold me Now:

I'm weak. I'm poor.
I'm broken, Lord but I'm yours.
Hold me now.

I know that God is the only one who can truly comfort right now. And I know that some days are going to be more difficult than others. I have to confess that I don't always see Him in this situation, but at the end of the day, I know He is there. I know that He cares.

numbness

This really is more difficult than I ever thought it would be...not just blogging, but also, and more so just going through this whole process w/mom. To get down to the truth of the matter, I've never hurt so much before. I don't know how to deal w/this. I'm so thankful that my sister and I live together during this time. It makes it easier to know there is someone who lives under the same roof who knows how bad this hurts and go through the same emotions together. I just hurt so much and every step is so hard. Sister and I were talking tonight and we both feel/do the same things...as soon as we get to a point where we need to move forward, we both just freeze and hesitate before moving. We are going to set up her room this coming Friday...I dread that day so much.
We got to spend Easter weekend w/our aunt and mom and we all had lunch w/our grandmother. Its so hard to see mom like this...its hard b/c she is clueless in some aspects, but you can also tell in some ways that she knows that something is not right. Its hard to be in a conversation w/her and realize the whole time that she can't keep up with the conversation. Its hard to watch her not be able to write her own signature...or initials. The whole situation is so heartbreaking. All of it just makes me feel so stuck and so numb...I don't know what to do. Its hard to focus on anything.
So that's where I'm at in all of this...if that makes any sense...

208

We signed the paperwork today, got a room...there were actually several rooms open, and we got to see them all and pick one. It all seems surreal. I can't believe we are sitting here at this table, signing documents...for mom to live in a "new home." We got asked hard questions..if something should happen and she needs to be resuscitated, do they resuscitate her or not. What kind of question is that? I mean I know that its one that they have to ask and need to know...but man...thankfully we get to think about that one...(we are leaning towards resuscitate her.) I think that's what she would want....especially at her age. How do we tell her...we were given suggestions tonight and told to think about it, that its a decision that only we can make....but man...its hard. And what if we make the wrong decision and it just goes bad? What do we do then? I just can't believe that this is where we are...I never thought things would be like this...

I don't wanna be an adult

Seriously though...its not all it cracked up to be. Its not all that bad either...but come on...
Anyway, I know I havent posted much but right now I really don't know what to say. I feel overwhelmed with all that we have to do. We are looking for assisted living places...which is really hard b/c mom is so young - especially for assisted living, but we really feel that its our best option. Its really hard to make sure all of her bills are paid and all of ours as well. I always feel like I'm missing something. I think one of the more difficult things about dementia is the grieving process. Grieving that your loved one (mom in my case) is totally not the same and never will be and is basically gone, but still physically here and having to take care of her. Figuring out what her living expenses will be is hard too. All while trying to live life fully...so difficult. Just thinking of all that we have to do makes it difficult to even get out of bed.
In other news, I was offered and accepted an administrative assistant position at my current company. I start that position tomorrow and I am really excited about it!!
Its late so I think I'm going to get ready for bed so I can get up bright & early.

Lessons Learned - #1 Pride check

So, when we left the doctor's office on Tuesday, sister and I were confused at what was happening and how quickly mom was responding and ready to leave...so of course we had some questions for the doctor that we just did not think to ask in the moment. Sister was able to talk to him today and here is the first rule of the game:
Rule #1 She is never wrong.. we will have to bite our tongues.
I dont like lying. I'm learning how to be honest, but now...when mom is having an episode...refer to rule #1...she is never wrong and I have to bite my tongue and go along with it.
So...I have this thing w/pride...and I really really like to be right. So...I guess I'm going to have to learn how to go along w/stuff I dont always want to go along with. Basically...we will have to treat her like a 3 year old while acknowledging she is an adult. That is going to be so hard. So....it looks like I will have a lot of pride checks in my future...we'll see how that goes.

Why does every moment have to be so hard???

i'm not good at this whole writing thing...as you see...started a blog in Aug...and a whole 7 months later, entry #2 comes upon us:
I feel a myriad of emotions right now. and i dont know how to say it w/o just saying it so, here goes: mom was diagnosed with dementia around 3:15pm today. Lewy body dementia to be specific. I wasn't too shocked, as we've known she has had some form of dementia for several months now. Not really relieved either, b/c lets face it, who would be relieved to find out their mother has dementia???
but like i said earlier....flood gate of emotions over here...i'm sad...my plans included my mom watching me grow up, have babies, get married, you know that whole thing...and, well, it doesnt look like that will be happening. I always thought that once my sister and I grew up and got out of the house, she'd start doing fun stuff, like go on trips and join empty nesters groups, get married, and just live that lifestyle. but it looks as though that dream has been shattered.
its hard because my mom doesnt see it (and won't.) She thinks the dr is wrong and that everything is fine and she only has a concussion. Needless to say, she is very mad and thinks everyone is against her. She told us that if we told my grandma or my aunt she wouldn't speak to us again. She demanded to have her keys back and her checkbook - even when the dr told her she could not drive. Its really scary that she thinks that nothing is wrong. Even more so - how she will defend nothing is wrong and her arguements don't even make sense...just adds to the difficulty of the situation. But it is common behavior for her diagnosis. So, what do you do?
I'm scared of what the future looks like for her, and for us. I was told today that our future would be worse than hers. We will experience the side effects far more than she will. I'm scared of selling her house...how do you do that??? I've never even bought a house, shouldn't you have to buy a house before you sell one??? I'm fearful of family attacking each other in the more difficult moments. What if I make a wrong decision? Will I be chastised? I feel as though a weight has been thrown to me that I just don't have the strength to carry.
I'm 26...and am learning how to take care of myself...how do I take care of someone else? Especially an older family member...especially my mom...especially someone who is stubborn. The doctor told us today it's basically like living with a 2-year old, that she will require the supervision of a 2-year old. 2 year olds require a lot of supervision!!! How do you supervise an adult the way you would a 2-year old but still treat them like an adult? When I worked in day care, I was the teacher in a class of 2-year olds...and yes they are hard, and the days were challenging, but looking back, I loved it....but there is a significant difference...a 2-year old child is teachable. You have the hope of "it won't always be like this," they will grow up and its really cool to watch kids grow and learn new skills and develop personalities... but an adult....there is no hope...it will always be like this...or worse. And its your mother...someone who you've had hopes and dreams for, that you wanted to cherish their friendship, that at this point in your life, you want them pouring out their wisdom on life. I'm scared of having to watch her suffer. Its hard enough already. I know its only going to get worse.
so, right now...i'm just heart-broken and hurt. I don't know that I've ever hurt like this before...and I've learned the last couple of weeks, that I truly do not know how to deal with hurt...I think I tend to suppress it until it doesnt "bother me." And Praise Christ that He is teaching me that that is not the correct answer either. But I'm also dealing with the fact that I don't know how to deal with hurt...so thats hard too!!!
So, I'm trying to cling to one of my favorite verses..."Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." Hebrews 4:14-16 I have to admit though: I'm struggling...not with the fact that God is here...I get that, I get that the Lord is in this situation...but that Jesus is with me and able to sympathize with my weakness....like he is here and he understands....that I don't fully get. I want to...trust me, I do...my head gets it...but my head is so big and my heart is so small....Lord, help me!