To some extend we have settled into a routine and Lois and I share caregiving responsibilities. Now that we have figured out how and when to give pain meds we have had a very good 24 hour period so far; Meaning it was good for Will and for us. I want to run away when he is folding double with pain and I cannot make it stop. At least he lets me rub his back when he is in pain – it sooths both of us. Not having all the hospice support agreements in place is also a source of frustration for me. We are in need of strong leadership to guide us in unity in doing the right thing for Will. Our instincts prompt us to do one thing and yet at this time we are supposed to ignore those instincts. Will is also frustrated (Bored? Scared? Angry?) and is more often moody and rude. In my heart is huge conflict about how to handle him. By nature he is a funny, kind and smart boy, and I am thinking his mood swings must be because of the pain and the different narcotics. Lois reminded me of Dr Andersen’s words two weeks ago ‘ we should continue as normal and discipline him if necessary’. Really? I mean REALLY? Have the ones that have made these rules been in a situation like this? It is getting harder and harder to remind him of his manners – it is easier on my own emotions to remain kind and patient; Just the thought of making him cry close up my throat. Making him cry is not the kind of memory I want for myself! Is it really important to expect him (and hence us) to behave normal when nothing else is normal?
I know there are folks reading this blog who have walked a similar road in the past. Let’s hear it first hand from you, please. And I can reasonably understand that there are no one solution or way to react, but please let me hear from you.
Grandma Sally
3 comments:
I have been in similar circumstance, and I promise you I know (at least some) of what you are going through. Here is what I can tell you that worked for me.
When the pain is too great, when it was more than my boy (and I) could bear, I was able to honestly say the realization finally came, that whether it be today, or a hundred years from now, all faith in my doctor would eventually fail me. It was then that I realized that my REAL faith was in someone else. But whom?
Blessed are the poor in Spirit (William and mother) for theirs is the kingdom of heaven.
Blessed are those who mourn, for they SHALL be comforted.
And who is this, that my faith was in all along? Some would say Jesus, and they would not be wrong, but more specifically, who was it that comforted me when it was too much for me to bear? Well, He hovered over the waters in Genesis 1:2. He took the form of a dove at Jesus baptism and tore open the Holy of Holies at Jesus' death. He is the comforter, the Ancient of Days, the Lord Almighty is His name!
And when I could not endure my private tragedy, nor bear to watch my son endure it, I remember that He watched His Son endure it. And I found a BRAND NEW respect for the woman (Mary) who watched her son die on that cross.
So, you asked, and I'll tell you, the real thing that worked for me was, everytime, when it was unbearable, I uttered the words, "Hail, Mary, Full of Grace, The Lord (Holy Spirit) is with you. Blessed are you among women, and blessed is the fruit of your womb, Jesus". And I learned that I am not only the son of Father Abraham, and Mother Sarah, but also the son of Mary. How did I ever make it through those days when I thought I could bear it on my own?
May the Lord bless and heal William and comfort you all. You are NOT alone. I hope you teach William about Jesus, because it was the Holy Spirit that brought me through. The Lord God loves His children.
Hi, I have walked this journey and Yes, displine him in Love of course and pick and choose your battle My 9 year old daughter would have walked all over me if I hadn't had to remind her I am the Queen she was the Princess and yes there was time I went to my room to cry after all she was sick that's how we comfort the situation but being sick didn't give you the right to forget all I had taught you William is going through alot and you named all those emotions can you imagine how we as adults deal with some of life's curve balls but some how we see strenght in our children. I will continue to pray I have been a faithful reader to the post but today you asked for comments and I could not not leave a comment, but I have a few suggestions take pictures, pictures pictures they are our memories, live this journey with no regrets again pick your battles with William only he knows really knows how to fight the cancer and with Hospice Advocate for your rights like it's nobody business, be the rude lady at the store that always gets their way because they have a way of annoying the person to the find a way to quiet them. Did you have a social worker at the hospital? they should have resources that help you. Again I will pray for you and keep reading I will only comment when suggested hope it helps and take it one day at a time Love Starla Mitchell's Mom
My son Andy was diagnosed at the age of 26 and lived for one year. He found out soon after his diagnosis that he couldn't take the chemo. His tumor had grown into his heart. So we knew for months that without a Miracle - Andy would leave us for heaven. Andy "lived" everyday to the fullest. We coined a word "Cliff-diving" assure each other that things were ok. Because one day Andy went with a group of friends to do just that - cliff-dive. My husband was mad that he was going and said - what if he gets hurt. From that day forward when Andy would be 4 wheeling, dirtbiking etc all the things we thought to dangerous - we would just simply say "Cliff-Diving". Andy was at home on hospice the last 12 days of his life. He passed peacefully with me and his dad sitting beside him. I miss Andy so much - he was one of a kind. I know he is in a better place without pain or fear. May you use every second you have with William for any positive memory you can make. My sons' name was William Andrew Foley. I have been following William for some time and we pray for William and the entire family daily. Know that God will carry you through this. With Love and Blessings
Marie Foley
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