Monday, March 21, 2011

Doing What I Can

As many of you know, my father has Alzheimer’s. He was diagnosed about two years ago and has since managed to remain at home with my mother, tending their home on five acres of land outside of a small town in Northern Ontario. In that time his memory and cognition have declined although, because he has also had mini-strokes that cause aphasia (inability to find a word) it’s sometime difficult to assess his level of understanding. He can be surprisingly lucid in moments.

In the last year, he has taken to wandering, sometimes on foot and sometimes on the riding mower, always with a vague story of needing to get someplace down the road. He’s also become preoccupied with returning to the community where he grew up several hundred miles to the south. This past weekend, for the first time, my mother could not convince him to return to the house and so had to call 911. In his distress what did come to light was that he was frantically trying to return to his childhood home so he could help his mother. She passed away some years ago, but both she and my father were physically abused during my father’s childhood by my grandfather. My father left that house and the abuse at seventeen but my grandmother remained.

My father is now in the hospital and decisions about his care have to be made. Unfortunately, about ten days ago my mother was also diagnosed with Alzheimer’s. She is finding this diagnosis very hard to accept and so is resistant to any level of assisted living for either herself or my father.

So, I am driving to my parents home (several hours north of Toronto) to meet with the social workers, doctors and nurses who have become part of the team assisting my parents. Decisions will have to be made- impossible decisions- and I am grateful for the expertise and compassion of the geriatric team that has been in touch with my parents over the last few years. I have delayed the journey until I felt I might be able to do something useful (as in helping them move and then later preparing their home for sale) because my own on-going health challenges with Myalgic Encephalomyletis (ME or Chronic Fatigue- CF- as it is more commonly known in North America) mean that I cannot stay too long or return frequently. I don’t know how long I will be away or if I will have internet access (or the presence of mind or heart to write a blog or post on Facebook) over the next while- so there will probably be a bit of silence from my end.

I have watched friends traverse this difficult time with parents, and when I was a social worker many years ago I often dealt with finding and providing support services for the aged. But. . . there really is no preparing for being in this position with your own parents. Each person`s right to self-determination is something I value deeply. I do not want to force decisions on either of my parents. . . .and yet, I am the only off-spring involved in making choices they may not be able to make, choices that will hopefully give them daily care and some modicum of safety.

So, I will do the best I can. I will listen to my mother, my father, those with far more experience in situations like this, and I will listen deep within in an effort to determine what is the most compassionate and caring way to proceed. I have no wisdom on how to do this except one step at a time, one breath at a time, with continual prayers for guidance and help.

I keep thinking of a Theodore Roosevelt quote: “Do the best you can with what you have where you are.” Which I suppose, is all we can ever hope to do.

17 comments:

  1. I am so sorry to hear you have all this heaviness to bare Oriah! It makes it so much harder when we ourselves are not physically strong as well as the added burden of having no one else to share the load. It can sometimes seem so unfair! I wish you strength for the difficult task ahead of you! Take care!

    ReplyDelete
  2. Take good care,...

    ReplyDelete
  3. I'm so sorry to hear about your parents. I too had a very independent Mom and Dad who were suffering from Alzheimer's. It is difficult to make decisions for people who have looked after themselves for so many years, making decisions that they don't agree with. One of the things that helped me was to think of their safety first--and as I'm sure you do--to understand the reality they are experiencing isn't the way things are now. It's a fine line to walk between not taking away their ability to make their own decisions and making the best decisons for them. And yes, it's one step at a time--doing the next thing and the next thing. Both of my parents passed away in the past year and a half. And I can honestly say I feel I did the best I could for them....

    ReplyDelete
  4. Blessings and love from me, a devotee. I wish you a strong heart, and a big hug. <3

    ReplyDelete
  5. As we say in New Zealand - Kia Kaha

    ReplyDelete
  6. Oriah, sending you kazillions of angels to hug you tight and give you strength and guidance to handle all of this.You and your parents are in my prayers to find a solution which is okay for all of you.

    Much Love and a big Hug,
    Sabine xox

    ReplyDelete
  7. Warmest of blessings on your journey xx

    ReplyDelete
  8. Bless you and your parents. Sending love and peace. x

    ReplyDelete
  9. Prayers go out to you. I also have had to make tough decisions concerning my mother. I have also been blessed with caring people who know the ropes and guide me.Peace be to you.

    ReplyDelete
  10. Pat Mary in LondonMarch 24, 2011 at 10:49 AM

    Dear Oriah,

    I have M.E., and my Mum had dementia. She died 6 years ago, and now my brother and I take turns to live at my Dad's in Oxford, about 60 miles from where I am in London. My Dad is 92, has cancer, and is pretty immobile ....

    Deep resonance for me as I read your latest blog, but I also honour that each of us is unique, each of our stories are different.

    I wish you all possible resources, outer and inner, all blessings - everything you need. I don't know what this might look like. I can guess, good friends being available, and having sufficient energy, would be helpful...but though I love to read your books and your blogs, I have never met you and don't know you at all.

    So here I am far away from Canada, in London, thinking of you in this moment. And whenever I am sitting quietly I will have this thought/prayer/intention/visualisation - that you have all the resources, help, love and energy that you need for now, and the time to come.

    Love from Pat Mary, in Islington, London, UK

    ReplyDelete
  11. Have valued your thoughtful posts for some time now..... sending you love, strength, and a peaceful mind.

    ReplyDelete
  12. Oriah, what a difficult passage when ones parents move to a new stage of being. I too went through this with my parents and my in laws. One thing that so helped us, since we live 1000 miles away was to hire a care manager who could watch out for them, check on them and know the families wishes. It saved us so much worry and concern to have one person we could work with who would co-ordinate all the care. It sounds like you have some similar resources in your area. We found this also gave my parents some one besides family they could talk too and share their feelings and concerns. My prayers surround you as you make this journey and I hope all the right people will be there to support you and your parents.
    Lynette

    ReplyDelete
  13. Dear Oriah,

    I was drawn to your blog because of your poem, I thank you for the gift of it,
    my parents too are aging though not suffering from any serious illness...but lately I've been feeling weighed down with the sheer realization that they have aged and need looking after, they who once looked after me....

    all my good wishes on your journey.....
    whatever decision you take will be the right one

    best wishes
    & blessings
    Sabrina

    ReplyDelete
  14. hello from germany

    what you experience now i is a process everybody´s experiencing when realising that parents are aging and thinking about caretaking.

    if you commit yourself personally to do so you will have to make decicions for them for their best. and of course some decicions will be very hard because alzheimer or dementia are slowly progressing. there are times when they are very clear, when they can manage their lives and times when they think they can manage but can´t. and that s when youre part starts. making decicions, arguing because they don´t want to do this or that . . . .

    it s always about "let them have their will and than deciding for their best". and they might not like what you decide but they have to to what you decide.


    i´m into this process for 11 years now. for me it was clear. when i was a child they took care for me, now that they can´t take care for themselves anymore i´ll take care for them. and it s changing. sometimes i m fed up and i could climb the walls s . . it s normal ;)

    it s about everday life. and sometimes all concepts sometimes won´t work because you need to react immediatelly.

    the most important thing . .you also have to say STOP and take a rest in order to gain strenght. because you only can help your parents if you help yourself. an efficient social network, friends who are stepping in when your are stepping out is very important.

    one thing you might experience are the "expectations". "the society - community expect that goood children do this and that . . ." forget it. this is rubbish. if you act like that you´ll burn out in no time . . . .

    if your commitment to take care comes out of your heart that is all that matters. you do what you are able to do. what others think and expect . . . . . well it´s they´re thinking . . . ;)

    kind regards from germany . . alivenkickn . . .

    don´t know why my wordpress account is not accepted . . .alivenkick.wordpress.com

    ReplyDelete
  15. Thank you for sharing this. My Father has been in long term care for over a year now. He was diagnosed 4 years ago, also had the mini-strokes and difficulty with finding his words. I have been a fan of your work and recently liked your Facebook profile and read this. It is nice to connect with another daughter. Any more wise words on your path through this journey will be more than appreciated. Time does pass, you find a way and the balance always returns.

    ReplyDelete
  16. Dear Oriah ....I have too just returned from a long trip to visit my father who has advanced alzhemiers and mini strokes so as to support my mother as she has to make decisions she never thought she would have. Meetings with social workers and doctors proved so very supportive to us all. A tough transition . But there was humour and much love in the midst of it. Dad also wants to return to his childhood home and is confused he is not there. I hope you find peace and understanding in what is a confusing and strange illness to have and to witness. Your work has only this week reappeared in my life when someone brought The Invitation to our Artists way cluster. A powerful re remembering for which I thank you for. Heartfelt blessings to you x
    Linda (Devon)

    ReplyDelete
  17. I've been where you are Oriah, different times and circumstances but much the same heartache and pain. My heart goes out to you and your parents. Things will get better, a routine of some kind will be established, life will rearrange as best it can, given the circumstances. Cherish the days, my best advice for as hard as they are, they will be treasured.

    ReplyDelete