The Journey Continues


With the sleep I stole yesterday through the day it didn’t bother me too much getting up with Al through the night last night. He and I had many conversations during the evening and the middle of night.

I could clearly tell that Al  has made peace with himself and the world. When he did sometimes look me in the eye I could feel a calm staring at me. It has been so odd lately this week.

With Al being a massive routine person it seemed strange to no longer turn the fans on for him. At times he has asked for the TV to be turned off. It seems that silence has become his friend as his mind ponders on his life.

I only interact with his personal thoughts when he has asked me. I feel it is a very private process and I have no right to interfere. The night before we discussed his Grandma who lives in Florida. We also talked about an aunt who resides in Florida also.

There is pain in memories that Al and I both have carried for a couple of years now. I have forgiven the harsh words, and have moved forward; but when Al brings it back up I can feel a sting return.

I didn’t know how to handle it, since we could not go to Florida so he could speak to them in person. So I became the third person, repeating Al’s words to God that Al said and doing it out loud so he could be sure that God was getting his messages.

It seemed by the time we both found sleep he had come to an inner peace. He had also brought up last night that he wished he could say good-bye to family members. This part hurt me terribly and I can’t help but add I got a little angry.

The people who Al mentioned I have already previously contacted and let them know that he was reaching out to them. I have tried my best to get people in Al’s life to understand that he may be mentally challenged but not stupid. He misses people and has hoped that he would get those visits.

Al only has issues with comprehension, other than that he knows who his family and friends are. He also realizes who has not contacted him in some way and then he cries, telling me he did something wrong. I can do no more for him on this topic unless I want to get on bended knee to those and beg, and I refuse to do that.

Last night Al said he thought he was done with everything that was important to him but for one thing, the will. He said he needed to make a will. I asked around for a video recorder but I never located one.

The next best thing I could do for him was to take pen and paper and let Al write his own will, with me doing the writing. I know that it would not hold up in a court of law, but it was sealed and complete in Al’s mind.

He told me about his coca cola collection. Who he wanted to have certain things. He talked about his vintage car collection. He had been obviously thinking about this very much because he had me write down his clothes, dresser, TV, shelving units. Just about everything in his room was added to the will and separated.

When he felt he was done I read back to him what I had written and he felt content with it. I drew a line and Al signed it. I had silent tears running down my cheeks and all I could do is reach out and rub his arm and his fingers.

He talked then about the ladder to the sky and the little lights he was seeing. I told him that if he decided to leave during the night to always remember how much I loved him. I explained that I would never forget him and reminded him how special he was to me in my life.

He wrapped his free hand over mine and started to cry, but I heard clearly through his tears saying to me, ” I love you sis. You are the best sis I have ever had.”kids sleddingpurple candles100_0749

42 thoughts on “The Journey Continues

  1. broke my heart to read that, i am so glad he has you and i can only hope my son has the same devotion from his own sisters i have lost count how many times i have drilled into them that they have to look after him, help him if anything happens to me, but i still have worries deep down and i can only hope that they can be as strong, as devoted and as caring as you have been to Al, please know you have my full respect and admiration and as always you have my full and complete friendship, please let Al know had i been given the honour of knowing him i would have treated his friendship as something most precious, even as i type this i wipe away tears, stay strong and though i am thousands of miles away please know that both you and Al will always have a friend in me.
    my thoughts are with you both

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    • Kizzy, these are beautiful words and I take them straight to my heart. We do worry about how our family and friends will react when they are placed in a position of being more responsible. For me and Al, it has brought so much. Tears, sorrow, joy, a closeness that siblings only recognize. I have felt honored to help him along this journey and when he is no longer here, I will be sad but will rejoice his freedom from pain and MSA. Thank you very much for your warm spirit

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  2. I pray with all my heart that Al will be soon released from the prison of his diseases – Oh Terry my heart continues to break for you both and my admiration for you is an ongoing upward ladder to peace. Love youxx

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  3. Terry I love the updates and this one I read with a somewhat sense of relief for Al, because he has made his peace with what is to be and I am sure it has given you a sense of peace as well. I would suggest perhaps for those family members that he misses and has something he wants to say to them that you do as you did with his will, write it out for him, again just to give him his final desire. Praying for comfort for you both. love and hugs

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  4. Thinking of you both at this terrible time you are both going through sending all my love to you both and what a wonderful sister you are to AL xxx

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  5. Your brother loves you so much and thank you God for those words he spoke to you. I can only imagine the level of joy through the sadness that you must have felt to hear that. Praise You, God for that moment. Hugs and prayers to you both.

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  6. I continue to pray for you both. I am happy that he has found a sense of peace and that he was able to tell you how he feels. I am happy you wrote it all out for him like he wanted. I just pray that the family do not come out of the woodwork once he has gone on to total peace and has gone to be with God to take over and somehow make your life miserable by trying to take everything he had. I say this not out of cruelty but experience with my late husband. None wanted anything to do with him until he passed and then they all came and found a legal way to take all he had. Made my life miserable and then left once they achieved what they set out for. I would maybe talk to the care providers to see if there is not something they can do to help make it all legal to stand up in a court to protect him and yourself. And if not then I would speak to a lawyer like a probono lawyer who charges nothing or the county prosecutor. Most will do a free consultation over the phone. I know this is prob the last thing your thinking about and trust me was the last I thought of too. But I regret not getting the video made when he was still coherent enough. And seeing how we did not legally get married as he would not just in the eyes of God they took everything from me. I even got evicted from where we lived. I am so happy he has found an inner peace with this all. And I am so happy you both are getting the chance to have these chats. You are such a special person Terry and a wonderful sister. I could only pray that I have someone as wonderful in my life when my time comes to comfort me and help me to reach the kind of inner peace Al seems to have done. I continue to pray for you both and for a peace to reach to your heart as well. May God be with you both in this very difficult time and and may you both find the strength and courage to get through this all. Take care

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    • Some things are in legal forms, but these items he is mainly concerned about, we did our own will for his benefit only. I can’t imagine anyone coming here afterwards, since no one has said or done anything before, but you could be right. I hope for the most part I have all of his life taken care of legally and if I forgot something than I will have to fight with my own powers. Hugs my friend

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  7. Oh Terry, Thank you for sharing your journey with us. I will forever have etched in my mind the picture of you and he huddled in the bathtub riding out the storm. Now you continue to comfort him and protect him in this last storm. The peacefulness that has decended is perhaps the eye of the storm…which means it should soon be over. I pray for strength and peace for you both. Such an awesome sister you are and continue to be.
    God bless you!

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  8. This is a very touching post. It’s comforting to know that Al is finding peace. You are a special person & then some for being there for him through & through. The time – especially these moments of sharing moments with each other will be with you forever.

    If you or Al have concerns about the will – maybe see if a notary public can come to your house to witness & seal the signature. Maybe someone at the hospice would know about this or recommend someone ? Just a thought.

    It’s sad how some people won’t come to see him or contact him after you passing along the message. But – that’s on them. Hopefully – they will contact him soon & get in touch with him as he would like.

    {Hugs} to you & Al

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  9. Terry, I am not a lawyer, but I believe if you have 2 signatures and a notary who could be one of the witnesses, the will should be good. The only thing is the witnesses should not be gaining anything from the will. Dad and I had lawyers prepare ours, but the bottom line was the 2 witnesses and the notary for the signatures. Good luck. You have come so far, prayers for both of you.

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