So this is October 2013…this month marks the 5 year anniversary of moving in and caretaking my parents. The time has both speeded by and gone at a snail’s pace. I think as any experience, one perceives the speed of time based upon the individual experience or event on a daily or moment by moment basis. Since we moved in together, some things have remained the same and some are acutely different since we started. Our routines are similar, but the amount of dementia has increased. I have recently brought someone in to be there for them when I am at work. They are balking at this loss of independence, and that any money is being allocated for this care. I just felt we were turning a corner. My Dad had fallen a couple weeks back and broke a rib. I was not at home at the time and I knew I wanted to have someone there to perhaps prevent another fall or at least be there if another one should occur. If my Mom or Dad break a leg, hip, or worse…we are in another place and at least one of them will be in a Nursing home. I am watching out for TWO parents. TWO parents who walk with canes are hard of hearing, and are not thinking clearly. When my Dad broke his rib, his doc prescribed a “Walker” – a good thought, but only if my Dad would use it. But as it is, he has to be constantly reminded to use his cane. So now the extra caretaker (Joe) is in place. My parents are not keen on this and I’m sure they were worried and waiting to see how their routine will be altered. I am trying my best to see that the basic routine is intact. My Mom was thinking she would never get to go out to dinner again, because my caretaker happens to be an excellent cook. But we are still going out pretty much every night- (have been for years now). To have someone there has been a godsend in many respects. Joe is spiritual – he takes my Dad to church on the weekends, so now I don’t have to worry about him falling there and I can still get my Mom out for shopping during that same time period. Joe has found ways to communicate with my Dad, (who is basically deaf at this point in time) in ways that I would not have thought of or had time to contemplate. He has brought google maps up on the computer to show my Dad what the street my Dad grew up on looks like now. He brought him a daily mass book with the gospels printed out for each day. He watches the Tigers and Red Wing games with my Dad. It makes me smile that my Dad is being engaged in things he enjoys. My Mom likes having him there for the extra help in assisting my Dad but I get that she does not want to feel her role in caretaking my Dad has been replaced. It is a difficult dance to blend this new routine in and make everyone happy or at least feeling at ease. I only know that having someone there to trust has eased my heart when I am not there. I feel blessed and watched over on so many levels. My parents have been bucking me about this change and when I was discerning whether this was the right move or not, I was torn and second guessing myself. However, in the last couple of days, as I watched my parent’s thinking move into a more confused state about finances, and acting as if family members (who have passed on) were still alive, it has become even more apparent that this was the right time for this transition. And, just now, as I finished this last sentence, Joe has emailed me with an update …he and my Mom had a wonderful conversation where he mainly listened to her. And before that, he had just watched my parents stroll down the hall hand in hand, obviously still in love, allies in marriage, friends and partners in old age. This image of them makes me smile in this moment, – tomorrow may shift and they will be in a moodier space, blocking all attempts to help or manage. But for today- we have smiles, and stories shared. I’ll focus on that for now.
“If you can’t go somewhere,
move in the passageways of the self.
They are like shafts of light,
and you change
when you explore them.”
I know that it has been a long time since I’ve posted here. It has been a continual litany of responsibilities that keep me too tired to write or even desire to put thought towards this blog. I have chosen swimming, walking, movies, eating, reading, working, etc. over having to think about and reflect upon the daily drills of elder care. In the future, I will write about some of the elder care experiences I’ve had in previous months, because for now, I am much more home bound; my Dad has fallen and broken a rib. I am in the midst of finding extra help. My parents are bucking this process on so many levels. I get they are feeling powerless. In their eyes, I am taking over another aspect of their independence they are not ready to give up; how they want their money spent (not on outside help) and having their space “invaded” and being cared for by someone other than family. Of all the different challenges I have encountered through this process, dealing with their emotional instability is the most difficult. Moody, confused thinking, irritability, are part and parcel of my daily encounters. I MUST and WILL find time to get quiet. I know that in the quiet, I get to visit those “shafts of light” Rumi talks about. Those places in my soul that I remember loving in the quiet and the stillness of my youth, amidst even the bouts of disquiet living with a sibling with mental illness. In the quiet, I will pray the same 3 favorite prayers of author Yolanda VanZant. 1) God Help Me 2) God Help Me Now 3)Thank You. I’ve been praying prayer #2 and prayer #3 a lot lately. The help is arriving…I know I’ve been heard.
I hold the space for my parents to experience the beautiful truth in the amazing poem and short movie below by Derrick Brown. I wish I could gift them the knowledge of this truth as they live and breathe in this moment now – as they live for each other as if there were no tomorrow. Can I hold this truth in my heart and live my own life more fearlessly? Gosh, and if I did…what beautiful poetry would I write? And,… what courage could I impart to my Mom and Dad to calm their disquiet, as I hold their hands while we three walk this HOLY path at dusk.
It’s two against one. One parent’s depression, complaints, rantings – at times, are difficult. Then multiply it by two. Dealing with their moods and their needs all by myself is like being forced on a roller coaster that I had no plan to ride. After growing up with a younger sister with mental illness, and now, dealing with my parent’s dementia – so much of my life has been about learning how to maintain equilibrium. So how does one maintain focus? “Focus” is something I should be pretty good at – I have been a professional photographer for the last 25 years. But in this situation, holding steady is difficult – some days I can hardly hold the space I’m in, and… at the same time – I can’t quite let it go. I know this space, this ground, if you will, to be the place where compassion is seeded. I do know that “focus” won’t be found in thinking about what my siblings are not doing to help. Those thoughts will detour me off my lane quickly. Instead, I need to focus on solutions to giving myself more time; to feed my soul, get some more sleep, address whatever needs I have, so that I can come back to the business of taking care of my parents fully. There is no substitute for lost time or lost sleep. I am fully aware that the present moment is all there is. I keep thinking of that familiar quote – “Be in this world, but not of it,”. Staying present enough to be helpful, but not so present to become lost.
I know the wisdom of this: I can catch the true spirit of my parents through looking in their eyes. Eye contact is a must to stay present with them. I focus in on their eyes -therein lies the why and the focus of my journey.
“WE COME INTO THIS WORLD ALONE, WE LEAVE ALONE…AND EVERYTHING ELSE IS A GIFT”
A couple of posts ago I mentioned how sad I was when I heard Whitney Houston passed – her voice and spirit were such a blessing. Her light and amazing voice brought so much joy to the world, and I felt so badly that she died by herself with no one by her side. As I elder care my parents, I hope that my hand will be the one they hold when they cross over to the other side. I want their passage to be less lonely even knowing that it will be something they do alone. This role I hold and the event of Whitney’s passing made me reflect about what I would want for the end of my own days. The week after Whitney’s passing, some words and a melody came to me – I would be driving my car and would find myself singing this song – a little obsessive really, almost as if being channeled through me. I eventually started carrying a tape recorder so that I could record my composition. Although my voice is softer than I’d like to sing this, I still wanted to share it because I feel I could at least sing what the words have to say and get my intention across. Someday, I hope to hear it sung by someone with amazing pipes, good breath support, who can sing it with a passion – somehow I think those who come to the time of their last breaths would want others to know and be mindful of these words to know how to “be” with them. I cannot stress enough how much composing this song, writing a blog, taking an artsy photo of my parents, or any other creative practice helps me to process and move through the stress of this tremendous responsibility that is with me 24/7. My creativity is seeing me through on so many levels….when I am in touch with that inspiration I feel like spirit is holding my hand and helping me find my way.
Just a note – when listening to my song, imagine hearing it sung by say a Jennifer Hudson, Reba McEntire, Gladys Knight, or even an Andrea Bocelli – I am hearing a rich, deep toned voice of an artist who’s done some living. Then wrap the trumpet of Chris Botti around the edges to create a pensive, passionate, thoughtful resonance. To hear, click on sound link below.
Quite beautiful images that open your heart- by Isa Leshko
If your reading my blog, that’s all I can ask or would want…keep your heart open.
When Whitney Houston died, I felt sad. Not only because she was no longer gracing our planet with the amazing voice that she had, but also because she had died alone. When I thought about how much joy she had brought to the world, that lonely ending didn’t feel fair. I have a few posts to write about this as how it relates to eldercaring, but for this one, I just wanted to include the link of her performance of “I Didn’t Know My Own Strength.” I find this song very inspirational as I wade along in this role as eldercare giver. I wanted to share this video with those who are reading this blog who are walking this same walk with me in their own lives with their parents. Our common paths link us in a way that no one else can really understand unless they are in the same position. This experience challenges me to find my own strength on every level as I’m taking care of my parents pretty much on my own. There are some really tough days. I’m surviving. The thriving is found in the moments of consciously knowing what I have discovered about my self and acknowledging the courage it takes to do this job. To ackowledge the work it takes on a daily, sometimes moment to moment basis, is to surrender to what needs to be done, without resenting it at the same time. Resentment is a spirit killer and so is shame – it can slip in under the door so easily – that’s why carving out more time for myself is necessary. That precious “me time” is where I get to bask in the consciousness of knowing “I got to know my own strength.” Bless You Whitney… and bless my parents for continuing to teach me on this journey.