Archive for December, 2015
Such a beautiful lady, and a beautiful life. This is a phrase my daddy said today and it’s stuck with me all day. You see, on top of being a full time caregiver for my son who has a brain injury, I’m moving into a support role and somewhat of a caregiving role for my parents too. Don’t misunderstand my role – my siblings and I are all on this journey together. We’ve been coming together to begin this process since my mom has started to decline and my dad has asked for help. It’s been kind of cool the way my brother and sisters have begun to work together to take care of mama and daddy.
Mama is displaying very obvious signs of dementia. She’s been in a steady decline for some time now, it’s just getting to where daddy can no longer manage it as he doesn’t feel well himself. Mama is obsessed with going to church. It used to be in the mornings, but now it can be anytime at all – she is in constant go to church mode. We are all afraid of her driving since she could become disoriented, but daddy’s getting tired of driving her up to the church all the time to prove there’s no church.
We decided as a family that the best thing is for our parents to move in with one of us kids and my brother’s house is the biggest and most accommodating. So the process has begun. Today daddy and I were talking about how mama can no longer perform daily tasks like cleaning, cooking or laundry. She is missing some logical sequences somewhere in there. With a shaky voice daddy said he never expected this – but who does? No one expects dementia or Alzheimer’s; or brain injuries either for that matter.With audible tears, he says She’s such a beautiful lady, and has had such a beautiful life. To which I replied in my own shaky voice – I know, it’s not fair. It’s never fair.
And once again there is this overwhelming disappointment with life. Another reason I really don’t like most Christmas shows and this time of year is tough. They are so fairy-tales-y. They always come together in the end and everything works out smoothly. The guy gets the girl, the kid gets the gift – and ends with a magical moment. So unlike life.
Even the Bible doesn’t always have fairy tale endings like some faith-ers want us to believe. Stephen was stoned – and died. For that matter, many of our New Testament heroes died a martyrs death. Adam and Eve’s story – the first one in the Bible didn’t exactly end picture perfect. They had the life anyone would envy – living in the garden, walking and talking with God. But then they were thrown out – that had to hurt their feelings a bit. Plus then one of their sons killed the other…. not a pretty picture. Noah was ultimately saved along with his family – but he witnessed a lot of devastation in the process. And Daniel lived most of his life as a captive. He fared well, but it wasn’t the picture perfect life complete with wife, kids and family.
We are not promised a picture perfect ending like It’s a Wonderful Life – but in the end we will win I suppose. Knowing that my mom will have peace in the end – doesn’t make it any easier to deal with her decline right here and now as she fades away right before our eyes. Just because I’m already a caregiver, doesn’t exempt me from the rest of life. Stinks sometimes, huh?
Mama stayed with me Monday while daddy went to the doctor. My independent mother is reverting to needing to be cared for ans watched over like a child. She depends on daddy so much. She really has had a beautiful life. She and daddy raised four kids, she went to school before it was popular and became an LPN and then went to college to get her degree and worked as an RN. She has ministered to thousands of people over the years. She plays the piano and preaches – even pastored a couple of churches here and there. She’s always had a heart for the down-and-out and to this day will talk to total strangers. She’s taken care of many people over the years – and her table welcomed anyone who needed to eat or fellowship. Now it’s our turn to take care of her.
It is going to take all of us! And we’ll need the same strength she has talked about for all these years. I’ve heard her quote many scriptures – and today as I embark on this part of life’s journey I’ll hold to one I heard all my life – I will keep him in perfect peace whose mind is stayed on Me. I’ll try to remember that one from Isaiah as I navigate through the next few weeks. I believe that His peace can help us have a wonderful life even in the midst of the struggle….and the pain….somehow.
I’ve never been much of a Christmas fan in my BC life (before caregiving), but I think I like it even less now. Don’t get me wrong – there are plenty of things I appreciate about it such as people tending to be purposeful about their giving and those who reach out to others in need. But why do we only see that at the holiday? Shouldn’t that be all year long? Shouldn’t giving be a lifestyle not just at Christmas? I know there are people who do that on a regular basis, and that’s good. And I do appreciate those who have given to us this holiday season. It’s really nice and warms our hearts for someone or some group to acknowledge we are indeed still alive! Every action of generosity is always appreciated.
On the other hand, I think I speak for many caregivers on this – life goes on. Our day doesn’t change one iota because it’s Christmas, Christmas Eve or New Year’s Day. As a caregiver we have everything to do today that we did yesterday – nothing can be left out. These are not “days off” for us – and there is no break. And actually in many ways adding in a day of extra cooking, extra shopping, extra this or that – it can be overwhelming at best. And while I will enjoy the additional time with my family and am looking forward to it – no one knows how much more planning and work it takes just to do what is normal.
My thoughts started along this line because the nurse who came to check on Chris today (her normal monthly visit) acted shocked that the aide said she’d be here tomorrow on Christmas Eve. She won’t be here on Christmas Day of course – and while I understand that – it means what little break I do get – I don’t get. And if she chooses to not work on Christmas Eve too – it means a full week before I get to run errands or can get outside for a run. No big deal – I really do understand – but we are on hold as if our need does not exist on the holiday – in a strange way it sort of makes me feel like our needs are not validated – we are not important.
For many, the holidays are a difficult time and can mean additional emotional baggage just to make it through the day. Staff hurries about so they can get their jobs done so they don’t miss their holiday ( and that’s okay) – but while everyone else is enjoying a day off – caregivers still have a day on with additional responsibilities to live up to. It’s just a reach sometimes – well worth it – but makes me tired just thinking about it. lol
For many caregivers what should be the happiest day of the year can be a very dreadful and depressing time. We all have loved ones who have passed and somehow we tend to miss them more on the holidays. For me, I miss my son every.single.day – even though he is still technically here. I’d love to give him a present and see him actually open it himself, smile at me and even give me a fake “thanks mom.” lol – But that’s not going to happen – he’ll be the same silent wonder on Christmas Day as he’s been every other day of the year.
I guess listening to everyone else talking about and planning out wonderful trips and Christmas vacations just got to me this year. Even though the day after Christmas I will spend with family and I’ll enjoy it – I still have that sinking feeling like I’m missing out on something in life. Emotions tend to run so much higher and the normal fights with depression and anxiety seem amplified. My life doesn’t change from one day to the next – from one holiday to the next. Every day there are things that have to be done and they can’t be put off until tomorrow…..ever.
This year, we were blessed by a group who went way out of their way to make our holidays a special time; and I’m so thankful – they really did make a difference for us. Today I look at my son – and think of all the things I have to do to care for him and all the things I have to do because I’m way behind in work – and I’m just overwhelmed again. Because every day is basically the same between caregiving and work, I never feel like I get ahead – there’s literally no breathing room.
So this year while you are piddling around and hurrying around to get all your holiday shopping, cooking and stuff done – just take a moment to think of someone you know who doesn’t get to enjoy a “normal” holiday – or a day off. Just give them a call – send them a card – stop by and see them for 5 minutes — sometimes people just need to be reminded that others remember they exist. Brighten their day just a bit – by acknowledging the fact that they have value in your life – and that someone out there cares. Those seemingly small gestures do make a huge difference to someone living in a cave!
As someone who always has to have scripture for everything – I leave you with this thought – it’s from Matthew 25 where Jesus is describing the sheep and the goats. He said to the sheep, who had no idea what they were doing: I was hungry and you gave me something to eat, I was thirsty and you gave Me something to drink, I was a stranger and you invited Me in; naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me. They asked Him when, where and how they had done all this – and He said –when you’ve done it even to the least of one of these – you’ve done it unto me.
Don’t worry about drumming something up just to please Him though; the sheep were doing all that naturally – the goats never got a clue! So for those of you who have reached out to someone in need whether it’s a caregiver or not during this holiday season – I say thank you for looking like Him.