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.
My Journey through my mom's diagnosis of Dementia with Lewy Bodies and Alzheimer's Disease
Tuesday, June 30, 2009
Wednesday, June 17, 2009
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.
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.
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