Too much too soon.

My dad is usually awake and out of bed before 8.30 a.m. so when he still hadn't come into the living room by quarter to 10, I thought I'd better go and check on him.  I kept 'dug' out of the way so she wouldn't jump on top of him and give him a fright.
I knocked the door gently before entering his room.
"Dad, are you awake?"  I asked.
"What?" a muffled sound came back.  "Aye," he continued.  "I was up at 9 o'clock.  I'm going to get ready for the dancing."
"Are you?" I said.  "Well I'll put on some music and you can shimmy your way into the shower."
He laughed, his voice a bit hoarse from being woken up and not quite ready for the day ahead.  It's no surprise that his confusion was already heightened.  I had brought him home from his regular respite Care Home late the day before after leaving him there for one night to allow me to attend a very special funeral.

In the last few weeks it has become crystal clear that looking after my dad 24/7 has had an adverse affect on me that I didn't see coming.  It's not the physical looking after him although that has also been impacted but will get better and back to normal again over time.
During my mother's illness, my dad had no clue what was going on or what was about to happen.  Even when I explained to him that she wouldn't be coming home from the hospital, the news was met with "oh well...these things happen."
I would visit my mother with him and as soon as we left the hospital it was like we'd never been and she didn't exist...for my dad.  I went about daily life with him, keeping him happy, making jokes and taking care of all his needs.  Keeping him calm and beyond all, protected.  But in the background I kept my own thoughts very much inside.
It was during this period that I noticed my hands becoming increasingly painful.  This was followed by pains in my knees.  I didn't do anything about it, thinking it was just the strain of doing too much and not taking time to rest, but how could I.  After my mother's death, the pains worsened and started to become more of a problem.  It wasn't just my joints any more.  It was everywhere.  My sleep is interrupted every night with my dad going back and forth to the toilet so to have this additional annoyance was leaving me drained beyond belief.  But dad would get up the next morning and come into the living room which was already back to normal with the bed chair tidied away and ask his usual question, "Did you sleep well?"  To which I'd reply "Yes dad.  I did."
He'd further offer "I had a great sleep."
Punch me why don't you!

My emotions have been all over the place.  I sit with dad while he watches TV and I mess around on my laptop and I'll glance over at him, watching him lay out his snotty hanky on the arm of the chair to "dry it out".  I know...
His little ways (apart from those gross in nature) can set me off and I leave the room to stop myself crying in front of him.  I can be making dinner or doing dishes and some little thing will come into my head and I'm fighting tears.  The weight on my chest has gotten worse and I feel like I'm in a constant choke hold.  My whole body feels like it has been stomped on.  The extra pounds I've gained aren't helping.

For 19 years I've cared for a young man with complex special needs.  Those of you who keep up with me on Facebook will already know this as I've shared our story over the years as he was very much a part of not only my life, but my family's also.  He was never a 'job' for me.  Paul was my wee treasure who absolutely idolised me.  I could do no wrong in his eyes.  Paul would go to respite once a month and on those days I would be with him.  When my mother was taken into hospital, I was due to be with Paul soon after but my situation meant that my work had to be put on hold...permanently.  This included my time with Paul.  As it happened, Paul was also poorly at this time and was taken into hospital.  He did get home eventually but things weren't going well.  Despite all of this, his mother would call me often to make sure that I was okay.
My mother passed and it was business as usual for dad and me.  I vacated my rented home and moved in with my dad, dragging him along with me in the process.  Keeping the stress of it all to myself.  Reminding him occasionally that I'm not his wife but his daughter.

Life just went on from there with hidden tears, aches and pains, solicitors and stress.  Then came the devastating news that Paul was back in hospital only this time there was nothing more they could do.  It was too much.  I remember I was dressing my dad at the time when his mother called.  After hearing this I carried on helping dad with his socks and making jokes.  Later that morning I went to see Paul in hospital.  He was asleep and sedated, but I took his wee hand and put my mouth to his ear and said, "Paul....it's Aine!"
He opened his eyes and beamed a smile.  My heart breaking, I smiled for him and told him I loved him...as if he didn't already know.
Leaving the hospital that day, I started to cry and the tears just wouldn't stop.  Uncontrollable in a controlled silence.  Sitting behind my dad in the car to go home, I buried my face in tissues to stifle the noise.
Home again..."Cup of tea dad?"  I ask.  "I don't mind if I do." he replies.

Paul was able to spend his final days at home with his family.  I visited two more times on a Wednesday when my dad went to his Day Centre.  On my first visit, Paul was smiling and awake although very weak and not the little man I was used to seeing at all.  But he put on a petted lip as he signed to let me know he'd been in hospital and had been given injections.
"I know Paul...don't worry.  I'll kick their arse!"
The following Wednesday when I visited I was met with a very different scene.  Paul was asleep with a little furrowed brow.  Not able to shout out his usual response "Puck aw!"  Figure that one out for yourselves.  I'm sure if speech bubbles were real it would have been up there above his head in bold letters.  I hoped I would see him again.  I didn't want to say good-bye.  I left saying "see you next week Paul."
I went to Birmingham that weekend to Cake International at the NEC.  On Sunday morning the unwanted call came.  Paul had passed away at 4 a.m.  My daughter Vicky was with me in the hotel room with the kiddies and my dad.  Once again, the tears were controlled.  We had to get on with this day and make the best of it.  My time with my daughter and grandchildren are precious at the best of times but this time more than ever.  Feeling so lethargic and uninterested in the day ahead, we carried on.  The wee ones were playing and having fun.  Charlie, my grandson, was toddling around and giggling.  Jessica gave me a big hug and I commented, "My wee bairns, (my little children) what would I do without you."
My dad who was sitting on the edge of the bed watching and listening said, "You've still got me!"
Vicky and I looked at each other with her saying, "Well that's something for your blog!"  We smiled.

It was almost two weeks before Paul's funeral took place.  During that time, the build up of emotions were greater than before.  As the funeral drew nearer, I began to wonder how I was going to hold myself together.  Dad and I had a doctor's appointment the day before, both of us getting the results of our blood tests.  The second lot for me.  Previous tests for rheumatoid arthritis came back with a negative result, as did an x-ray of my hands.  Dad is thriving and better than he's ever been.  I led him back to the waiting room while I discussed my own results, but I also had to get some other things off my chest.
My latest blood results also came back negative.  Although relieved, I felt like I was going off my head and told the doctor so.  He asked me if I'd heard of Fibromyalgia.  I said I had but didn't know too much about it.  He went on to explain and I listened.  Then I told him that I had something else that I needed to address...my emotional state.  I started to tell him how I was feeling but it all came out backwards.  I told him I had Paul's funeral the next day and I didn't know how I was going to get through it and not show emotion.  This puzzled him as to why I felt I couldn't.  It's not quite how I meant to say it but everything I was feeling got muddled and I began to cry...in front of him.
With my head in my hands I told him that since the death of my mother it was almost like "okay then, that's over...business as usual." and now Paul.  Was it going to be the same?  He's gone so let's just get on with it?  I told him that I felt stifled, unable to show emotion around my dad.
"Why not?" he asked.
"Because he already doesn't recognise my mother in recent photographs and thinks I'm his wife.  Picking up his wedding photo telling me how good we look.  I've had to put the photo in a drawer.  How can I keep reminding him that she's dead.  His happy state of mind and health is more important." I replied.
I explained that Paul was such a huge part of all of our lives but I wouldn't be sharing the sad news with my dad because I know he wouldn't remember.  But how can I forget?  Or more to the point, how can I remember and not react.  I told the doctor that the physical looking after my dad is not an issue, but I am finding that my mental state is very much out of control.
"Did you know that Fibromyalgia can be brought on by extreme stress and anxiety?" he asked.
I didn't know.  It seems that all this bottling up and pretense is showing itself in a debilitating fashion just to give me a swift kick up the arse.
He told me that the adjustment to life as it is without my mother and taking care of my dad is a major thing and I should seek the help of Bereavement Counselling as a matter or urgency.  He also put me on an anti depressant which is also given to those with Fibromyalgia and in time my body AND my mind should get back to some kind of normality.  This isn't me.  This isn't how it's going to be forever.  But I am finally taking the help that I need and intend to surround myself with positivity.

Four days later and I am already feeling a little brighter.  I am making changes to this house that is now my forever home.  Painting walls with brighter colours although it takes me longer to do it than before...I'm in no hurry.
I took dad to buy some sparkling Christmas ornaments which absolutely delights him.  We've switched them on already.  Why not.  It's never to early to sparkle.
I parked dad in his chair near the car park but kept him indoors as I hurried to the car to offload some bags.  When I returned he said, "I nearly got a click there."
"Did you?" I asked.
"Yes," he said.  "This woman walked up to me and asked if I was okay.  I told her I was just waiting for my wife."
Christ dad, you'll have a long wait!
"Did you dad," I said.  "You should have told her you were waiting on your daughter.  I'm not your wife dad."
He almost looked embarrassed and said "Ah ken!"  (I know)

Waiting in the queue to pay for goods, an assistant opened up another till and called out "Next here please."
I remained where I was with dad because we were already in the wider aisle that catered for wheelchairs.  Unaware of this, my dad began to wave a pointed finger towards the empty aisle and turned to me saying "Anne!" My mother's name.
I didn't correct him on this.  I simply said "I need this aisle for your chair dad.  It's okay."

To others it's endearing, sweet, sad but not so bad.  It is of course all of these things.  My dad is as happy as a pig in shi  muck living on his own planet with me by his side.

For me, I haven't just lost my mother and Paul.  I have also lost my dad.  With a little help along the way, I will make sure I don't lose myself too.

Life goes on.  I cannot bear the weight of grief and I will find the outlet I need for me to make things easier.  It has only been a few days with a little medicated assistance but I already feel that better things are yet to come.

"And in the end, all I learned was how to be strong alone."