Thank you for your words. They were very helpful. I think this online forum will help me to share this journey which tries my patience and affects my confidence. Just to know that we don't have to be Super People of any kind, is a relief. Sometimes the demands of caring, running a house and having some kind of life outside is challenging beyond my understanding. I really could relate to 'deferred maintenance' as I recently attended an appointment for myself with an eye specialist that I had been postponing. It felt almost like a treat to be there, I know that doesn't sound well balanced. I have some work to do in that area. As I mentioned, I am moving us forward to sell the house and he agrees it needs to be done but its an argument every step of the way as far as decluttering and beginning to pack away. I believe that is what is vexing me at this time. Once again, showing me , my expectations need to be adjusted. My faith has grown, in that I continue to Let Go and Let God and I continue to let go of my vexing, knowing, at the end of the day, it will somehow work out. When he was first diagnosed with his relapse in 2014, I put all my energy into doing whatever it took to support him, the nurses and the doctors. Going to the hospital daily with homemade food, helping the over worked nurses, changing bedding , walking him, bathing him, helping him swallow a dozen pills without any salvia in his mouth due to the multitude of additional drugs going through multiple IV's. Grabbing a wheel chair, when allowed, to take a joyous trip, outside into the healing fresh air. The joy of a simple ice cream. All those trips to emergency in the middle of the night with high fevers. They knew us well there. It had become our world. Following Directions and supporting and encouraging my husband to Follow Direction. Now, my energy levels are not what they use to be. The mental and physical fatigue is the hardest. I look for small joys, glimpses of moments of happiness. To relax and smile. Knowing that it is my energy , motivation and follow through thats going to get us through. Yet, I rely completely on my relationship of a loving God as I understand Him. Every day, I ask for help and direction. When he was diagnosed as terminal, I thought and believed God would give me all the strength and wisdom to walk this journey with him. Afterall, I thought, this is a sacred journey. Its official , according to the medical team, he's close to passing over. And its a sacred privilege to walk closely with someone who is just about to go and meet His Loving Maker. I never thought it would last this long, I never realised the dark head spaces that my husband would be wrestling with and taking out on me. I didn't think it would go on and on. Live each day gratefully, they say, try telling that to someone who's identity and self worth was in his job and the material possessions he owned and places he could travel. Try acceptance, living life on life's terms, finding things to be grateful for, that is what I have been taught. Although I tried to teach and encourage that with my husband, as the saying goes, you can lead a horse to water but you can't make him drink. So I let go again. Every day, I let go in some way. and focus on what I can do. I am currently thinking of taking a little extra money and driving to the city for some 'me time'. Its a thought, now with the preparation of selling the house, I wonder just hoe I will do that. Asking God for direction, not giving up and finding a way, somehow. Some say, put the thought out into the universe, have faith and watch what happens. No one really understands what its like to be a long time career but another carer. I hope the doctors read our feedback and the nurses. Integrated medicine can help with stress relief, meditation (prayer), massage, filing personal joy, somehow in this unpredictable roller coaster.
Thank you, Mnina