Aug 20, 2014 – First day of School….back to the grind
Summer is officially coming to a close for us here in San Diego with the start of school. It is a little bittersweet for me today. This is the first year that Sam and I were able to take a break from caring for Tom and take a vacation of our own…a real vacation. We slipped out for a trip to Paris. It was a great trip…so much fun to not have a schedule for an entire week….just doing whatever we felt like doing. Her first trip abroad, and I hope one of many. We enjoyed afternoon crepes and coffee, hot chocolate and evening walks. As I walked her to school today, I couldn’t help but feel sad that the summer is coming to a close and we will all be back to the chaos of homework, cheer practice, taking care of Tom and back to scheduled doctor’s appointments and the like. I intentionally took as much time off this summer as I could afford. I wanted to feel less stress, less anxiety, feel more rested throughout the summer. I wanted to make sure I could spend as much time with Samantha as I can. She is so fun to be around and has such nice friends. We tried to do as much as possible with the little time we had. She hss become such a nice young lady and has found her place to help with Tom and to help me.
Being out of the country made me a little anxious to be that far away from our home and from Tom and also made me very sad and happy. How can you be both at the same time? Sad to know that these trips that we all planned as a family we will never be able to do together and also, in the future, when Sam is off to college and her adult life, that Tom won’t be able to join me on those type of trips. I find some comfort in knowing that he didn’t know we were gone or for how long. However, that is sad to me. That the brain injury is so severe that he doesn’t know where we are, or how long we are gone. I really was so happy to be away for a week. I felt so guilty but was so relieved to be gone and sleep and not worry about another person but Sam and I. A bit of a double edge sword – We need the time away from the daily routine for our own health and well being, so we can be better and more prepared to take care of Tom when we return. A refresh. But, sad to know that he has no idea that we are gone. However, I think he was happy to see us come home….how the brain works still amazes me and confuses me.
In the end, I know taking our time off is the right thing to do. Anyone who is a full time caregiver will understand the need to be away and the conflict of being away. Also, it isn’t easy to be gone for any length of time. In order for us to go on our trip, I had multiple layers of people to care for Tom. Being gone involves Caregivers, schedules, meal preparation, medication, housekeeper, emergency home repairs, emergency plans, and etc. are all part of the planning process to be out of town. It can’t be on a whim. It has to be a plan, and the plan has to be solid. Thank goodness for my friends, family and visiting angels. We couldn’t have done it without them. We missed Tom, thought of him often and cried a few tears for our situation. But it was good for us both.
I must say, being a Caregiver can trigger such a wide range of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. It’s important to acknowledge and accept what you’re feeling, both good and bad, happy, sad. Try not to beat yourself up over your doubts, fear, anxiety, impatientness and misgivings. These feelings don’t mean that you don’t love your family member—they simply mean you’re human.
Sandy, I am so glad to see you have this outlet.
I love the point that the feelings you have are only “human”. I know one can have guilt like crazy if you don’t embrace that concept. Who wouldn’t “lose it” once in a while under pressures of this kind. It feels great and you can just laugh it off after its over.
You and Sam are so special. Your calm loving presence is just what Tom needs. Stay strong, leeeeeean on friends, like me. Tell me to bring chardonnay, or pick something up at Target on the way.
I thanked my family after Dave died for “being there” when I called for them. I asked them that should something similar, God forbid, ever happen to them…they reach out too. Often we are hesitant to ask for help. Many hands make light work…and everyone wants to help. So please just ask. ok?
Think of you often. When can I come see you?
Hedy
Sandy, my second go around so hoping you are able to see this post, I did the math this time! As discussed, I can identify but not directly as only my mother can do that as it relates to my father. My father over 17 years ago had TBI and like in your husband’s case a brain bleed. It robbed him of half of his site, left him weak on the left side, and he was not able to talk well or understand. However, the brain is an amazing piece of work as different connections started to form and things that went were replaced with almost bionic like hearing. I tell you the man can hear a pin drop two rooms away. He tried very hard the first year but was frustrated that this happened to him in the first place. My mother was the same with the feelings of sadness, frustration, anger, pity, and all the emotions in between. She got him even writing (which I still have that letter from 16 years ago) explaining how he loved me, that he was working hard, and that he hoped to get better. Well, then the worst thing that could have happened, happened. He had a seizure and everything he had gained he lost within seconds. At that point he gave up and we all could see it. That was a very hard time as a man who was an engineer, great in math, loved to drive, enjoyed the daily news could do none of those things and refused to work on it ever again. So, another round of anger, sadness, frustration, etc. However, something new came out of it, “swearing.” My father said no more than, “shit” before the stroke and now, he is the Mozart of swearing, which you can imagine can be very embarrassing. Now, here is where as my mother’s children (we were all married and could take care of ourselves at the time) pleaded, begged, prayed, etc. for my mother to either allow someone to come in or put him into a home. She refused and refused and so now all these years later she has become a slave to my father’s every wish, demand, desire, and more. The only saving grace is my sister will get angry with him and tell him he cannot treat her like that. My father was never had any patience before the stroke and now afterwards had literaly none. I cannot even begin to know the big decisions you have to make for your husband and please just know that I share this as a story of what could have been for my mother and father if only my mother had gone ahead and acted early on for a caregiver or a care home. In your case I understand that you may have already made these kind of arrangements and the fact that you went with your daughter to Paris I think is absolutely wonderful. Yes, full of guilt I am sure, but I am so hopeful for you and your young daughter that you will take the time to take time for yourself and have a life. My mother never did and I know it is a sadness that we all share as her children. I look forward to one day speaking with you further about your husband and things you have seen and perhaps I can even offer some insight if similiar situations have arisen with us over the past 17 years. You have a friend here in Tucson and if you ever need to get away please do not hesitate to let me know. Paul
Paul…Thank you so much for the great input. My heard goes out to you….I know the challenges and the difficulty this type of injury leads to. I hope to visit with you soon.
Dear Sandy,
This is very lovely. Glad that your doing it. Heard an article on the BBC August 28 about electrical brain stimulation boosts memory. They also talked about writing by hand what your going to do and or have done
helps you remember.
Taking moments away to breath in a different city are good for everyone’s soul.
Love of Hugs…Carolyn