Back to a New Routine

The title of this post is a bit of an oxymoron.  I am officially living back home after a 6 month stint of mostly living at my folks, but things have changed with my mom gone, and my dad living down the street. I would say I've changed a whole lot too… both emotionally and in the way I see the world/my life.

The past six months were insane/huge, here's the summary:

My mom got very sick in August, I flew down to help care for her, I realized my dad wasn't up to much any more let alone helping my mom therefore to a degree, all of a sudden I was helping/caring for him as well.  When I came home for a two week break in October, my mom moved to a palliative ward.

When I returned from my break, I travelled there to see her every day, often twice a day, despite awful horrible symptoms/sickness because I wanted to spend time with her, comfort her.  On December 2nd, she died.  My dad wasn't up to being alone so I had to help him figure out where he might want to live, organize the sale of his house, deal with the executor tasks on my mom's will, empty a house of stuff, find my dad a place to live near me, pack everything he needed, take over most his bills and finances, move him….oh right, and during this time, my dissertation was going through review and I was grieving horribly (not to mention ill).

I've had a few near-nervous breakdowns after returning home.  For the first 10 days my dad stayed here with me and he needs an awful lot of attention and constant companionship.  I was impatient with him some of the time.  Now he is living down the street and so far it's working out OK.  I see him everyday, but I don't have to help him fix meals, decide what to read or watch on TV, remind him to bathe…I am still dealing with all his financial stuff, and keeping him company some, but he has his own space, and 3 meals a day, and lots and lots of people to talk to.  Surprisingly, he seems relatively happy.

Next Monday I defend my dissertation.  It includes a 20 min presentation and then people ask me questions for an hour?  It will be gruelling.  When I did my mid-way oral defence I almost put my head down on the table at the end because my brain was shutting down and I was so far passed exhausted. However, I know I can get through it…I just will.  Hopefully I don't get too dizzy.  I will sit for the presentation and will even sneak my feet up under the table for the questioning part which will help with the POTS symptoms…

I hope this PhD translates into some type of part-time flexible work mostly from home in the future, but if nothing else, after next Monday I will be done…finished.  I wonder if I'm the first to complete a PhD almost completely from bed? Seriously! I only attended (less than 50% with accommodations) two in-person classes.  The rest (online classes, papers, library, interview research, analysis, writing) all took place from bed.  I also managed to swing a record 5 medical leaves out of the university.  So wish me luck on Monday.

After a whirl wind, I'm home.

Things were absolutely crazy the last week at my Dad's.  I had two friends planning to come out to help finish clearing the house and pack my dad, however, one had a work emergency and came two days late.  However, they were both fantastic and did a ton.  One of them even drove my dad's car north (a 16hr drive). There is no way I could have managed it all without them. I have the best friends in the world, no doubt.  My dad's house doesn't close until March 31st and there's still a few details to sort, but for now I'm home.

My dad is driving me insane asking 100 questions a day and sticking to me like glue (nothing new).  It has been almost 1/2 a year I've been his care giver as I initially flew down mid-August when my mom went in the hospital.  It is tough, because in some ways he is still functioning OK, but in other ways he is like a toddler.  I am quite ill now that I'm home.  The first day back was Okay, the second day I felt pretty ill and crashed, the third day back I felt even worse.

I have no patience for my dad, then feel horrible about the way I treat him.  This morning he got up early and banged around making noise and woke me up.  Then told me he had a big emergency and it was just that he was three days out from being out of glucosimine.  Then he fed the dog but didn't tell me so she had two breakfasts. Then he went out in -20 windchill to clean his car without mitts or a hat.

He wants permission to do anything.  When my roommate offered to go buy groceries for the week (I asked her if she would take him along) he instantly said no, he couldn't go (he doesn't want to do anything without me).  I made him go and he enjoyed himself.

How can I stick my father in a "home"? On the positive, it is four blocks away and he is social and needs constant attention and validation so maybe he will be happy after a transition period?  I've never been a parent so am not used to the huge burden of deciding things for other people.  For my mom, I was her POA and decision maker.  I had to give the hospital permission not to treat her final infection.  With my dad, I'm doing all his financial and personal decision making and it's a huge huge weight.  And I am so so so so exhausted.

Getting there….

Well I've been crashed/relapsed for over a week now.  Flu symptoms and some serious weakness issues.  For example,  I tried to put a box together (not pack it mind you) and just with that small effort my arms were burning with the M.E. weakness, and I was out of breath…and I did it while sitting on the floor!  Sometimes it surprises me that this illness isn't just chronic mononucleosis, it feels so much like when I first got mono that I don't understand how they really know it's gone.

My father drives me crazy a lot of the time.  He really needs so much attention and help and I am just not well enough to meet his needs while also dealing with all his stuff, selling his house, figuring out the details for his new place etc. etc.  It's just way too much for a sick person.  In fact, in retrospect it almost would have been better to move him somewheres first rather than try to have him here while packing and selling his house.  It's just too much for me and he is not really any help given where he is at (85 with mild dementia/cognitive dysfunction).  More than once I've considered just leaving him here and going home.  I can't believe how alone I feel sometimes trying to cope.

However, a couple huge loads have been lifted off me this week.  First, a good friend is actually flying out here, is going to help me pack and empty the rest of the house, and then will drive my dad's car north (a 16, 17 hour drive).  This is such a huge gift it boggles my mind at how generous it is.  I almost can't get my head around it.  She barely knows my dad, but wants to help take some of the pressure off me…honestly, I just can't get my head around that someone would do this!  And given how ill I've been the last week, and unable to do much, I feel like I'm drowning.  Her offer is like seeing that there is a life raft on it's way.

Also, my parents had wanted to sell their house in their church community, but given there is not really any interest right now, we were going to open the house up to the market.  However, someone knocked on the door a couple weeks ago and had heard through the grapevine my dad was selling.  He ended up making a private no conditions offer than is in range, so we are likely just going to accept it.  Another huge relief.

The last relief has to do with my dissertation which is now edited (again, albeit poorly) based on my committee's concerns.  So next it goes to an internal examiner, but except a few small formatting pieces, I'm done with it again for a while.  I also decided to pull out of talk I was going to give at the end of February as I realized it was just too much to ask of myself right now.  If I were home and it was the only thing on my plate, fine, but given what I've been dealing with, and the crash/relapse it just wasn't going to happen.

Finally, it's my mom's birthday today.  She would have been 79.  I'm thinking about her and missing her lots, I want to do something today to honour her.  I loved her a lot, and miss our friendship daily.  She gave me so much.

Surprise!

Warning, very vent-ful frustrated post.
Surprise, after saying I wouldn't be able to post for a while, here I am.  I definitely need to vent.

I am at my dad's very very slowly going through stuff.  While there were some offers of help, I've maybe had an hour of help with packing in total.  I think the reality is either I hire someone, or it will pretty much fall to me.

Some of it is very sad. On Sunday, for example, I went through the Christmas stuff.  Years of memories (ornaments and keepsakes) and with a lot of it, I wasn't sure what was especially special or sentimental or why.  Plus no-one in my family really wants anything.  My brother who lives out west and wasn't very close with my parents took what he wanted already.  I have two disabled brothers.  One is too badly off to show any interest in anything, the other one came over and together we picked out a few things for him, but they didn't even fill a box.  My dad can't remember and when I ask his opinion on anything he says "I don't know" or "I don't care".  It's strange that I have four living family members but no one else who is able or willing to go through stuff, or seems to care about any of it.  It helps me understand some of my mom's deep sadness.

I've been here a week and my skin crawls sometimes at the situation.  I feel desperate to get the heck out of here.  I think I will continue to work over the month, but if I have to, will just leave this house partially packed and unsold.  I will desert my dad too, if things don't fall into place, as awful as that sounds.  I don't know who it will fall to to deal - the bank? A social worker?

The plan was that we would sell his house and he would move north to a retirement home down the street from me.  But my mom and him were very very much hoping to sell their home in their church (they live in a church community).  However, no-one has shown any serious interest in buying the house and honestly, I just don't think I'm up to figuring it all out on top of executor tasks (that still constitute a pile of to-dos, and packing, and moving my dad).  Not to mention, I need to turn the edits on my dissertation around in the next two weeks and they are significant.

I can't go on like this much longer for my own mental and physical health.  I find I hate myself, hate my life, and hate everyone around me.  Most the time my dad drives me insane the way he follows me around, listens in on any conversation I have, and does almost nothing independently.  I know it's that his brain is not working properly, but I am obviously not the person to be his care giver, I'm close to the edge.  It's not that I don't love him, I just can't cope with him day in, day out.  I feel like I can't deal with him for another day let alone another month plus!*&%$$

I started taking St. John's Wort about a month ago knowing I would need something to cope with the next few months.  The problem with these things, is it's so hard to tell if they are making a difference.  Am I less depressed than I would have been had I not been taking it?  I've barely shed a tear since I've been back here, but I think that is more that I'm just too frustrated and overwhelmed to actually feel any other kind of emotion, let alone grief.  I just know that something is going to give soon.

Finally, as a spoonie, I'm sure my fellow spoonies can "get" what it means to try to do all this while sick.  People around here don't seem to think my health problems are any more than being tired or depressed or needing to put my feet up.  And I've even had comments about the fact that of course I can just tough it out if I need to.

6 weeks

It's been 6 weeks today since I sat and visited with my mom.  Tomorrow will be 6 weeks from the last time I talked to her.  I miss her a lot, most of the time.  It finally feels just slightly less raw although now that I am back helping my dad in their house it feels fresher and harder again.

I hate that I lost my mom. I feel so sore and sad and empty.  I have cried every day but one since she died.  I am sure that I am depressed.  As well, I am very crashed from my travel…

However, despite it all, I still haven't had a relapse.  That being said, I feel sick enough right now that I wish it were me, not her, that had passed.  I'm trying to just take things one day at a time. I try not to think about the past too much or worry about what's ahead.  This is especially hard as I feel slightly overwhelmed by everything that has to be accomplished in the next month or two.  But I am trying to set small goals, today it was cleaning out a closet and making a phone call.

Anyways, that's my update.  I don't expect I'll write much on here in the coming months, there is absolutely just so much going on and "oh yah" I'm actually trying to do this all while sick.

Grieving

I've been home for 3 weeks.  I have done a lot.  I'm not near as frenzied as I was at my parent's, but I have kept the pace busier than my usual, partly just to see if I could maintain it some, partly as there was a lot of catching up on my life to do.

For one, I sent off a copy of my dissertation to my committee.  Which means it is written, edited and approved by my supervisor.  There are still many steps to go: 3 committee members must like it/approve it, then it goes to an internal (to the University) examiner and then an external examiner before we schedule my oral defence….so besides helping my dad pack a house, sell a house and move, I may have a PhD to finish this winter/spring.  For now, though, I don't have to look at that stupid document again for at least a few weeks.

It's easier from here to remember I have built a little bit of a life, despite the fact that I'm mostly homebound.  At my parent's I felt like I was just doing care and running myself ragged, fueled on coffee and adrenaline.  Not that my parents aren't part of my life or important, or worth taking care of, just that I have built a little bit of a life here after more than a decade, I'd almost forgotten after months away.

Emotionally, I am not doing well.  Healthwise I'm not relapsed, although I have crash days and feel like I have M.E. - surprise. Grief wise I've been terribly sad much of the time.  I cry a lot, everyday.  I miss talking with my mom (we used to talk on the phone once a week), I can't believe she's gone.  Sometimes it's still a shock when I remember she's gone, that I'll never talk with or see her again in my life.  It's like a huge empty unfillable hole, sometimes the pain of it is unbearable.