http://www.youtube.com/watch?v=cIJrqFeb4qMWhat has this got to do with anything? Nothing. Its just me getting a kick out of finding unusual things in life and loving learning about other cultures! Yes an African American singing in Mongolia, notice the looks on the faces in the audience!
This weekend I once again found myself looking into my possible future through someone else's life.
The Loving Kindness excercise I let repeat itself in the background while I did other work late into the night, although the idea is to utilize it as a tool for meditation, I found it soothing (still loving the sound of waves) and I will get on the other side of my feelings of anxiety I am having this weekend.
Friday, I had a conversation with Ron, the father of both my sons regarding 'grandma', we are all close and I would say it was one of many conversations regarding her living conditions, and her innability to manage virtually everything now as she is now in her mid 80's.
In addition to this her son (who is Ron's twin) and has been disabled since early childhood, has always lived with her but could have functioned well in a group home if she would have "let go" many years ago.
As you can imagine the other siblings all men, are very attached to her but very frustated and very worried about the inevitable, and of course no wants to be the heavy handed person and hurt her feelings and take over.
As I have blogged and posted some of my thoughts about caring for my disabled son, I don't often talk about the subtle comments and sometimes direct in your face questions regarding what my plans are when my son reaches adulthood, what are my plans when I am physically not able to care for him?
What level of assessment is this? I recognize the intent of others to determine my awareness of the realities of caring for a severely disabled person. I recongnize that pre-planning and personal development are essential as I have made significant structural changes in my home over the years, and finally allowed the county agencies present to me what they are able to offer.
And as I mentioned in our introduction my son was a malpractice case, therefore the legal system has an input in terms of what options are available for his care, the school district has their input, and then there is the medical community who I consider "ground zero", in terms of his longevity and quality of life.
But even with all my tools and educated wisdom (as I consider it), I feel like grandma, I feel that this is my son, and as Dacher describes I am at a level where I am stuck and becoming 'out of balance', when the subject comes up, and like many special needs parents you feel no one will or can do the job that you can.
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| Is it too early for a cocktail? |
I do feel however, that whether in our careers or on a personal level interacting with friends and family it is essential to provide support and advice when necessary and this may include things they are not ready to hear
WOW! You have a plate full to be sure. My prayers (positive thoughts) are with you as you work this out. Deciding to put my grandmother in a nursing home was a very difficult decision, I have a second grandmother who was kept alive after a major stroke-I say kept alive because this was against her wishes, but she did not have a living will and her daughters disagreed with the doctor about her recovery-anyway I am watching my mother and my aunt lose a bit of themselves in taking care of her (I live too far away to help); care giving is the hardest job on earth.
ReplyDeleteYou are right....no one can do the job you do! The gift you have been give to care for your son is yours and yours alone. He is unique and no one else could possibly feel the love you do for him. Obviously I don't know you but through your blogs I have seen an amazingly strong woman. You may be scared of the future with your son but I do think that you will always do what's best for him and that is all you can do.
ReplyDeleteYou feeling "out of balance" could possible just be the idea that you are not in control of the situation. You don't know what life brings so there is no way for you to have control of where it will go. Take it one day at a time and let the love for your son guide you.
Michelle
Once again, I'm enthralled by your post. I would love to meet you in real life and have a cup of coffee, LOL.
ReplyDeleteI see similar situations in my line of work. Mainly with families who want their elderly parents to remain in/and die at home. The work is hard, no doubt, and it is certainly life changing. But the people who make it happen and those who are strong of hart and soul. And sometimes they too make the agonizing decision to place these people in the appropriate facility. It's never easy, regardless of what choices are made. I applaude you for your obvious strength and wisdom!
May God give you all the inner stregnth that you need to accomplish the necessary.
ReplyDeleteI can totally relate to your circumstances. Though we don't have everything in common, we do share some of the same delema's. My brother, who is 42 years old has severe diabetes and is in active kidney failure. He is currently on daily dialasis and has been taken care of most of his life by our paternal grandmother. However, my Grandmother is 85 years old and starting to suffer from dimensia. My heart goes out to her. I can understand her selfless act of caring for my brother because when we lived in the same state, I was his caretaker. I now stand at a standstill. Do I cross the country and take over the care of him? Do I move across country and better a life for myself. My Grandmother chose to move to Florida about 14 years ago. I also moved to Nevada from Conneticut. Essentially leaving him behind with no support system. This was challenging but I had to do what was best for me and my family. Over the years, I have asked him to relocate to Nevada and come live with me. Not only is his medical health deteriorating, he is also a miserable person. Everyone else is to blame for his problems according to him. I have had frequent phone conversations daily and try to keep a positive note. I have always portrayed loving kindness and loving thoughts in his direction. I have vowed to also have my kidney tested for compatability. Who needs two kidneys, especially when they are determined to develop stones 4 times in my lifetime. My own Mother would not consider donating her kidney and sees it as foolish because he has no quality of life. He chooses to have negative emotions and reacts vs. intentionally thinking about a set of circumstances. I understand that we feel love for all other living things, especially our own kin but sometimes the only thing we can do in the moment is pray for a quality outcome or a healthy learning experience. I hope that he feels the effects of my loving kindness and positive thoughts. I love him dearly but can not give up my total life for his benefit. He is currently being taken care of by a rehabilitation center. They are trying to educate him how to use the dialsis machine in his own home,so he developes an inner peace with himself. I know during time like this it is challenging to keep thinking positive but I do truely believe that God does not give us more than we can handle at any given moment. With the support of integral health along with self healing, I am hoping to project a more positive life for himself.
Thanks for sharing your experience!
Holly