I’ve been dreading this

I have known that I needed to get back to my blog, but its been something I’ve been avoiding like you cannot believe.  So much has changed since my last post from March 28. This was literally the day before our world changed.  Mom was hospitalized on March 29 and between that day and June 20th, less than 3 months, our world completely tipped upside down.  Mom passed away on June 20th.  Those months seem both so short and yet so long at the same time.  Three long hospitalizations, about 5 weeks total in a nursing home and then hospice care for 10 days while she passed away.  It’s been almost 2 months and it still doesn’t seem real in some ways.  Painfully real in others.

Where am I now? Struggling.  Fighting.  Relieved?

I struggle daily with my depression.  It has gotten worse – much worse as my good ol’ tells have surfaced and I’m monitoring them like you can’t believe.  I’ve flaked on friends, returned to napping (for 2 hours, ya, not good), my productivity is low.  Even as all of this is going on, I push it to the back of my conscious.  I’m trying, really trying to not shut out my friends as they are my lifeline right now. Family is all going through their own grief process and it feels strange at times to even talk with them.  I feel like I need my time to deal with what I need to deal with and perhaps I’m being selfish in taking my time, but as the oldest, I sometimes feel like I have to “solve” their problems — even though I completely know that I can’t .  It’s more pressure that I just can’t deal with right now – so I keep them at an arms length.  I’m struggling with my relationship with mom too.  I know I was there at the end of her life, but I feel like I completely let her down when I could have made a better difference in her life.  When she was ALIVE.  I was selfish and prioritized me over seeing and talking with her.  I know just regular phone calls would have made her so happy, yet I didn’t do that.  Can I blame my depression for some of that, yes, I know I can and that makes me even more angry that I didn’t do more to get it under control earlier. Why didn’t I?  Did I really think I was doing ok? Did I think I was stronger than Depression was? I put on that great mask and thought I was, but I definitely was not.

I’m fighting against falling too far down the depression rabbit hole.  I’m not sure what is “normal” when you’re experiencing grief and you already have depression in your life.  Is there such a thing as normal?  Where do I draw my line so that I don’t wait too long to seek help from my psychiatrist?  I’ve not found any resources that help with that, so I’m going by my gut.  I have been seeing a therapist who I really like.  I’m finally understanding the value of  therapy.  She has me reading a grief handbook that is interesting.(The Grief Recovery Handbook)  The book categorizes death as a loss, and it puts other losses (divorce, work, friends, etc.) into that same category.  It’s given me new perspective on how I look at my career and the losses that occurred there – there’s so much I haven’t dealt with (especially from NJ).   It’s also helping with the loss of friends that I had never dealt with, even though some of those are relatively recent.

This goes on behind the scenes while I’m trying to help my dad get back into his routine.  I know I can’t force anything, but I can cook for him, and help him with this too big house and the dogs.  He has to want to get back into a routine (either old or new).  I’ve reminded him recently that we really need to get a durable power of attorney in place and that we need his wishes written down – somewhere.  We had none of this for mom, and I know dad has specific things he will want done, so we need to know what those things are so they are honored.

And me too.  I’m trying to get back into a routine, but I’m not doing a great job at it.  Maybe I need to reframe it instead of an old routine, maybe I need to look at it as the start a new one.  But I need to get the exercise excuses under control.  I need that in so many ways, but I’m having a hard time incorporating it like I did before.  I know beating myself up over it doesn’t help, but I have to figure something out to get it going again. This combo of depression and grief really takes hold of me here.  People have said to  give it time, but I can’t  – I know how good exercise makes me feel both physically and mentally.  Perhaps this is my focus in therapy for a bit until I’ve got it back as a habitual part of my life.

I’m relieved in the usual ways one says after someone has passed away – I’m glad she’s not in pain and suffering.  I’m relieved the Alzheimer’s hadn’t progressed so that she didn’t know us anymore.  I’m relieved that we all had time to say our goodbyes and to make peace with the situation before she did pass.  There’s also a lot of selfish relief – I was relieved that I didn’t need to worry about her this year when I went to Florida for the annual Friends for Life Conference (although I did do a fair amount of worrying about Dad while I was there.).  In many ways, it feels a little freer, that we don’t have to consider mom now, and that makes me feel so incredibly guilty for having these feelings.   I don’t know, is this ok to feel this way? Am I looking for permission to have these sorts of thoughts?  Am I the only one in the family who feels this way – I’m too guilty to ask (see above — tis a cycle right now where I want to ask my sister these things but also feel like I need space from her too which I also feel guilty about.).

All of this is still new and I guess I’ll figure out ways to navigate it all – to process and deal with these changes. I know it will take some time, I know it will not be easy.  I’m investing in me so that I do come out ok.  More than ok, intact and intent on not making the same mistakes I made with mom, with the rest of my family.

 

 

 

Heartbreak

I’ve neglected the blog-o-sphere.  I’m sorry, my depression has definitely taken a back seat to life.  Oh, it’s still very much there, somedays painfully real and there, but I’ve not been able to let it take over.  It can’t win right now.  So I’ve been shoving it outta the way and not paying attention to it.  Is that the best thing, neh – but it’s not the worst thing either.  I guess I’m ‘stable’ enough to be dealing with the other things in my life to just kind of let it be…

My mom’s been sick for a while. We’ve known about the dementia for a long time but she was only officially diagnosed once it got so bad that dad finally acquiesced to an MRI. This showed the expected atrophy and her Neuro started her on Aricept which has been a huge help.  She’s responded very well to it and some of her confusion and disorientation has gone – for now.  But from July of 2018 til February of 2019 she’s been hit with one thing after another – she lost her vision to macular edema – started injections in her eye (ya, no way I’d be strong enough to tolerate those – but she has!), we finally learned about her kidney disease – she’d been hiding how bad it was for years, but it became so bad that her cover was blown.  She’s at the very lowest levels of stage 4 disease, and dialysis is staring at us.  Add to this a blockage between her kidney and bladder, that if she would have made us aware of her issues, we could have intervened sooner and her overall kidney damage would have been reduced.  But that’s neither here nor there now is it?  And with all this, she’s got her own version of depression – her GP has started her on celexa but its too little to really help combat what she’s going through. She is either in bed or laying on the sofa watching tv – has zero mobility and has been hospitalized because she won’t eat or drink enough to sustain her life.

So this is my new reality – helping my parents live.  I include my dad in this story because mom is his world.  They’ve been married for over 53 years and I don’t know what either of them would do without the other.  I help them happily as I think about what could have and should have been.  Mom retired 2 years ago and I thought, at 69, theyd have many good years of making trips to visit friends in Seattle, or the East Coast – mom always wanted to do a tour of the light houses on the east coast, or to visit my siblings in Colorado or Kansas.  This is not the life I wanted for her, for them.  I wanted them to finally spend time together and enjoy what was left of life.

I watch my dad, and I see his heart breaking for his love.  My dad is stoic.  He comes from a small farming town in Minnesota, and is still part farm, part engineer.  He’s conservative and keeps things to himself and is one of the most self-sufficient persons I know.  He could fix anything and today still wants and tries to – even though his muscles are starting to fail him.  He’s not an outwardly emotional guy, but you know when he loves you.  Seeing him finally coming to grips with whats happening and whats coming is so hard.  He embraced the land of denial for a long time and I think is now living with the guilt of what if – what if I’d done something sooner….  That question will never be answered, but it doesn’t matter – its where we are and what we are facing.

I’ve become a primary care-giver along with dad.  Mom needs help walking, showering – you know normal daily activities.  It’s hard to watch.  It’s hard to live. But it’s the least I can do for the parents who have given me so much.

And while I deal with all this, I know I can’t neglect myself, and myself-care.  I need to reach out and start therapy to help me deal with all of my emotions (mostly guilt).  I know that ignoring depression is not a healthy thing – its what got me to my lowest of lows in 2014-5 and I do not wish to revisit that place ever again.  So I’ll take this step, and see where it leads me.  And in the meantime, I’ll be here for mom and dad and wherever this road leads us.

Aftermath

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Two years.

I think I was in shock for two years.  It took getting through the midterms this week to realize that I was literally in shock for two years.  Like I’d been holding my breath for a long, long time.

Wednesday, I was finally able to exhale.  Did the election go exactly as I’d hoped? No.  But my little California district flipped.  For the first time, since we’ve been a city, we are represented by a Democrat.  And, while I know she’s not going to be a miracle worker, I feel that I will have a share of my voice heard in Congress.

I feel like my healthcare is not in as much jeopardy as it was even on Monday.  I feel like my ability to continue to receive treatment by my psychiatrist isn’t at risk.  My medications will still be covered.  Yes, its a big exhale!

As I was talking with my father, who is almost diametrically opposed to me when it comes to politics, I realized how much he didn’t understand.  I had to break it down to him and tell him that the “bills” the outgoing congressman had sponsored sure made it illegal for insurance companies not to offer me a policy – but it would make it ok for them to not actually COVER any of the treatment associated with my depression.  They could exclude my psych visits.  They could exclude my meds.  Remember how I was Dad 3 years ago – that would be me again.  I think I saw a bit of a light bulb shimmer just before he went to vote.

I hope you are also feeling a little bit of a sense of relief, that you are able to exhale a little more deeply today.  It doesn’t make Depression any less difficult.  Any less ugly to live with.  Any easier to live with. But, to me at least, it makes it less scary.  Less ambiguous.  Less ominous.

 

 

Sum…Sum…Summertime

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I’m sitting here thinking about the fact that August is more than half over and that summer, itself, is almost over too. This summer has definitely been more challenging than others I can remember and its all centered around my mom. My mom has dementia of some sort – she’s been in denial, as has my dad, for a long time. Reality, though, has really hit her this summer along with a host of other issues. She was diagnosed with age-related macular degeneration in July and has started the protocol of intra-ocular injections on a monthly basis. She’s tolerating them well, but after the second one last week, something happened and the whites of her eye filled with blood. The doctor doesn’t think its anything to be worried about, but its made her more anxious about the next time (who can blame her!). She was also just diagnosed with Stage IV kidney disease. In a few weeks, we go back to have a host of labs done to see if the disease has continued to progress (she’s declined more than 15% over the past year) or if she’s somehow stabilized. Regardless, we meet with the nephrologist the end of September and will make a plan to live with this condition moving forward. She’s remained strong in spirit and has said that she’ll try dialysis if it comes to that. She’s painfully thin, and super frail and I just wish there was more I could do to make her well — I’d give anything if I could.

My dad of course is her constant companion and care giver and its taking a toll on him as well. He’s exhausted (who wouldn’t be) and I look at it as my job to take some things off of his plate so that he can relax some and be able to care for mom.

With all this sort of ramping up over the past couple of months, I started to notice a few tell-tale signs creeping in. Procrastination, tiredness, poor sleeping…all too familiar signs of my depression. I got scared! I mean really scared, and even now, after speaking with my psychiatrist about it earlier in August, I’m still not sold that its all just sleep related (she seemed to think that if we can get sleep under control, the other things would be managed as well…so I’ve got a script for mild sleeping pills.). I’m not sure if this is working, I do know that I hate taking something else to manage this stupid disease. There are days I get so damn frustrated with it all I just want to ignore it — but I know what happens when I ignore it and I know how bad that is and would be on my parents – especially now when they need me the most.

I really wish there was a silver bullet – both for my mom and for me….

Giving back/Getting Back

Diabetes. It’s been in my life for a long, very long time. My Dad, My Uncle, My Grandfather all have had diabetes in one form or another. It was all something THEY had, until I started a job in 1995 where I learned that it wasn’t. And that JOB became a cause that has become so very special to me. What I learned is that diabetes is unlike most chronic conditions, it’s not just a pill you take and you’re good – it’s a constant balancing act where anything, basically everything, can have an impact in your day. You don’t get a break, you don’t get to say, I’m not gonna diabetes today – well you can, but then you pay for it. It’s something that impacts the whole family, especially if the person with diabetes is a child or teen. And imagine, just for a minute, what that constant stress, responsibility and pressure can do to your mental health. And not just of the person living with diabetes, but to their parents, their siblings.

It’s no surprise that people get burned out. It’s no surprise that people who live with diabetes also have a relationship with mental health conditions. Just another nasty tag-a-long that comes with the diagnosis. And its also not surprising to learn that there are painfully few mental health professionals who understand the nuances of what living with diabetes can do to your mental health.

Back in the late 1990’s, when I was still a part of the diabetes industry, the company I worked for was asked to sponsor a family conference – the first one ever. We did, but had no idea what to expect. This gathering was like summer camp but for the whole family with the added twist of educational sessions the parents/adults could go to while their children where in age group sessions (having fun and learning about appropriate diabetes management too.). Two decades later, this meeting is now the largest Type ! diabetes conference in the world for families and adults. This is the Children with Diabetes’ Friends for Life Conference. Over the years, the conference has evolved in include more and more psycho-social sessions to bring awareness and focus on the mental health impact that comes with diabetes – and its amazing! The healthcare professionals are exceptional and are skilled with working with how diabetes impacts mental health as you age and develop (imagine a session specifically focused on being a teenager with T1D and the mental health impact, or dealing with burnout as an adult?)

At this conference, I spend the week volunteering and it is honestly a highlight of my year seeing all of these wonderful people coming together to learn and support each other. It’s a week where people with diabetes are given a green wristband and those of us who do not have diabetes wear an orange one. While normally this would be an annoyance (having something on you at all times) – during this week, its a band of honor. So many of these T1D warriors are the only one in their school or job or community that they know with diabetes – here its the norm. Here, everyone has a hug or a shoulder to offer. Here, walking around with diabetes tools attached to arms and legs and bellies is status-quo. I can only imagine what this experience means to those who live with the day-to-day stressors of diabetes. I read the posts on Facebook, the blogs and hear the comments, but I can’t truly appreciate it as those who live with T1D and their families do.

After more than 10 years of volunteering, this year was a little different for me. First, I’m in a much better mental space than I have been for a very long time and I honestly couldn’t wait to dive in and be among these wonderful people. But something else happened, I had a few people come up to me and thank me for writing here — it honestly blew me away.(and to those who did this – thank you x a million, you’ll never know what it means to me!!!) I write because its helpful for me, somewhat selfishly, to get thoughts out of my brain and onto “paper” and to share my struggles and small wins. But to know that it has helped people who have so much more to deal with than I do – I don’t have the words. I get so much out of that week, way more than I give and I feel so lucky to be able to lend my time to support this organization.

If there’s a lesson that I learned and one that is so alive at Friends for Life, is to be present and reach out – it sounds cliche but you never know the difference it can make to others.

If you’d like to learn more or to support Children with Diabetes and their wonderful Friends for Life conferences, please click here

What to say

The deaths of Kate Spade and Anthony Bourdain last week still have me thinking. I went through a lot of emotions, just like I’m sure you did – the disbelief, the sadness, the anger, the confusion. I read a lot of what others had to say, listened to what others had to say. Watched as the suicide lifeline phone number was shared around the internets – hell, I shared it to because it seemed like the only thing that somehow made a little sense. I’m still in disbelief, I still really do not understand suicide. And I think this past week has taught me something, to stop trying to understand it because its not likely something I will ever understand.

I learned a lot last week – that suicide is one of two causes of death that is on the rise in America (the other being Alzheimers). That suicide is more common in men than in women. That handguns are used at a much higher degree than any other ‘tool’. And that in about half of the cases of suicide, there is no history of mental illness. These stats are all meaningful, and. help to paint a very meaningful picture of what is going on today. But they leave so much still unknown.

I kept going back to my dark days in New Jersey and thinking, then, how useless I felt. How I wasn’t making a difference anymore – and that I wasn’t performing at the levels I expected of myself. But I never did think that it would be better if I wasn’t here, or that they my pain would go away if wasn’t here. I kept asking why – why do some people start to believe those voices? And then I thought about how I felt so alone back then and that I was sure that others probably felt the same way, and I just hurt. It hurt and I felt like nothing I could do could or would make a difference in those people who were hurting so much. I know all the things they say are the right things to say – but would they make a difference?

Can we? – make a difference? What if we started asking how others were and really stopped to listen to their answers instead of breezing by? What if we started to smile at strangers every once in a while? What if we went out of our way with family, friends, colleagues — could these simple acts make a difference to someone who needed it?

I don’t know. But I think its worth the try.

It’s Been A While

I realized today that it really had been a while since I’d written. Part of that is really good – I’ve been really good. Mostly. Damn, wouldn’t it be nice to get rid of that qualifier!! You know, no matter how steady and stable you are doing, there are those days….those days where you don’t want to get dressed and go to work…that you snack incessantly(even when you’re not hungry)…that you cry for really no reason (that one KILLS ME!). Just those days.

I’ve come to realize, that I’m going to have those days. Now that I’ve found a drug therapy that seems to work pretty damn good, and for that I’m grateful(but how I wish that ability would have not made me gain weight — that drug rocked!), I realize that I’m still going to have those days where I just don’t wanna! But you get it, right, it’s not that I don’t want to, but that I just can’t. Im semi-conscious about it(its weird because sometimes I’m definitely not conscious about it), but just can’t seem to make the decision to DO what needs to be done. I think “normal” people have this sometimes, right? Is it a depression thing, or is it a normal thing?? Damn, I hate asking that question…

I realize, I’m probably going to go through the rest of my life asking that question, because when depression is a part of life, for me, there’s that pause — do other people feel this way or is it just me?

I’m ok if its just me. In some ways, I hope its just me, I don’t want to know that other people are dealing with this monster, but I know they are…and all I want to do is try to help make this monster a little less scary to those of us who live with it every day…

NAMI National Convention 2018

This just popped up in my email and wanted to share as I think it could be a very valuable and worthwhile experience.  I haven’t planned on attending, but will follow closely by twitter — maybe 2019?

https://www.nami.org/Get-Involved/2018-NAMI-National-Convention

 

So This is the New Year

Another song lyric (Thank you  Deathcab for Cutie) to start off the year.  I feel like I’m getting caught up on kicking off the new year just now.  Maybe because it’s my birthday week and that always makes me think of what the journey around the sun is going to be like.  I think it is particularly true this year.  I feel as if I’ve started actual 2018 off pretty well – have been connecting with friends, reaffirmed my commitment to a healthier me (actually logging my food/drink intake and exercising + yoga).  I’m happy with the start thus far, now the focus on keeping it all going, which for some reason, this year feels different – like I mean it all more.  I’m not sure why, but I’m really glad for it.

I’ve also been looking ahead a little more in 2018 — I’m breaking the year into quarters on a personal level.  I’m making goals for each quarter as it begins and I think that each of those smaller goals will add up to bigger, more positive changes which I’ve needed to make.  I also think that “chunking” it like this is a way of fooling myself into not thinking the BIG goals are all that big, that its all manageable.  For example, by the end of Q1 I want to get my mile time down to 14 minutes/per…  Do you have any tricks for keeping on top of these promises you make with yourself? I’m also putting rewards in each bucket – Q1 comes a little early, but I booked a trip to go see my sister for a few days.  I like having something like this to look forward to and it is definitely motivating me to stay on track as I think of it as a reward.

I’m also really happy with one of the little tweaks that my psych has made in my dosing regimen.  We lowered the dosage of the latuda and it has made a huge difference.  I’m not dragging in the afternoons anymore, I’m sleeping better and still experiencing positive aspects in the other depression zones (I’m able to focus, complete tasks, not moody, etc.). All of this has me starting both 2018 and MY new year on a positive note.  I hope that this is the same for you too.

Holidaze

Screen Shot 2017-12-13 at 9.31.31 PMWe are firmly entrenched in the holiday season.  How are you doing?  I mean, really, how are YOU doing?  Amid all the holly and jolly, this can be a tough time of year – its chaotic, expensive, and tiring even under good circumstances, right?  Add depression (and/or anxiety) and it can be  unbearable — I get it.  I was there. And there are times when I’m still there.  It’s not like you take a pill and depression disappears – it’s something we live with and some days are better than others.  I remember not too long ago, being curled up in bed and not going out other than going to work – I literally HID in bed and I was living away from friends and family in NJ so it was an easier thing to do.

The expectations of happiness at this time of year are a tough thing to face – yet some, heroically, try to manage through the holidays while in the grips of a depression.  I say heroically because it is heroic.  Going to a holiday party when depressed can be so BRUTAL!  This time of year, people are fueled by happiness – they are so focused on gift giving, and celebrating and family gatherings and parties and the New Year, and all the shiny, sparkly things….it can just be so overwhelming.  They don’t want to hear how you’re barely vertical, how you struggled to find something to wear and make yourself presentable – to put on that mask that you’re hiding behind, how you’re counting the minutes til you’ve been at the party long enough that its okay to make your goodbyes (or use the excuse that you have another party to go to and escape…)

I get it.

If you’ve made it out – I’m applauding you because it really is the best thing for us. To be out among our friends – the people who know us and like/love us.  And we may even enjoy ourselves a little, putting all the negatives behind us for a little while.  We laugh and smile and mean it!  I know how hard it is to do this and how much harder it is to do this OFTEN during this time of year.  How we selectively choose where we will go (attempt to go) because its all we think we can handle.

If you’ve made it out, were you able to enjoy yourself?  Were you able to connect? I hope so – I genuinely do.  Because even when I struggle being in a group of people, I know its a good thing for me to be doing. The people we choose to surround ourselves with are so important.  Are you able to reach out – even to one or two people to try to make an effort or a plan to get together? It’s only been the past year that I feel like I can genuinely do this and its with select people for sure.  I still can be so anxious when I’m faced with a party or event where there will be a lot of people I don’t know, or where I will feel uncomfortable.

If this feels a little preachy, and that’s not my intent.  I just want those who read this to know that feeling all the feels during this time of year is normal, because its hard.  It can be hard without the depression – missing family and friends, just being melancholic.  And if you’re trying then that is awesome because it is hard.  Even if you’re not able to make yourself get out there, it is ok – just try to recognize that there are so many people who get it, who care and who want you to make it to the party or event.  It’s about the little things that make us connect  – and whatever those are for you, I hope you find them in abundance during the holidays and beyond.  Becuase we all deserve to find some joy, no matter how small it may seem, this year.