The journey of knowing Love with ALS
We had nothing left but faith. Faith in Love, faith in God. To adapt to the new situation, to accept and understand the fact that the time has come to "know God's Love". God is Love, Love is God.
How much time did daddy have left to be in our company? No one knew if we should count it in days, months or years? But one thing was certain, he was slowly dying before our eyes. There will be moments when you ask what is better? When you see how your loved one is suffering, he disappears before your eyes, knowing that you can't help him in any way, there are no medicines that would save his suffering. Or when your loved one leaves in a few seconds due to a heart attack and you don't have time to say goodbye? I was personally filled with the feeling of being with him 24 hours a day for several months in these moments. Although it hurts a lot to see how his condition is getting worse every day, nothing can replace the feeling of being near him, hugging him, squeezing him, giving him a kiss, giving him love from the heart and being able to say goodbye to him in my mind every day, because you don't know what it will be tomorrow. You are literally grateful to God for every new morning when you wake up and find that he is still breathing....
Daddy was a fighter all his life, and he wasn't giving up now. There was a time when I could take advantage of my knowledge and show him the "magic of yoga" and hopefully ease his suffering at least a little. We have established a morning ritual:
1. In the morning, when he woke up around 6-7 a.m. – breathing exercises
2. Warm-up, stretching, yoga - adapted to his capabilities
3. Meditation
4. Breakfast
5. Prayer – in yoga we would use Mantras. But since my father was a Catholic, he prayed Christian prayers.
In the afternoon he walked around the house with a walker, when his legs still obeyed him for a few minutes, he cycled daily on a stationary bike, friends and close family visited him and the days gradually passed.
One day he started choking when he swallowed, I had to give him first aid a few times. So we got to the pulmonary hospital. The results of the SpO2 saturation tests were still normal, he didn't need a breathing apparatus at night yet, but we got a cough assistant and a mucus aspirator. We had to go for regular check-ups, in case the results worsened, a breathing apparatus would be needed. Before Christmas, I was taken to the pulmonary department with an oximeter that monitored the oxygen level during sleep. The results were still fine. When saying goodbye, the doctor wished me happy holidays and that I should enjoy Christmas with my daddy, because no one knows what course the illness will take and it might be his last Christmas. Tears welled up in my eyes and I cried the whole way home. When I came home, I pretended that everything was OK. I couldn't tell my daddy what the doctor told me. Because he, with his willpower, would be able to die by morning.... I only told my mother and my brother. And you have to continue with a smile on your face, give hope that everything will be fine and give him love. Those who have a loved one with ALS at home, do not forget to love them and hug and kiss them. Even if there are days when you can't take it anymore, know that your hug will fill their hearts and souls with love and understanding that they are not alone in the pain they are experiencing. Even if they can't hug you anymore, you give them that hug every day and love them. Tell them every day and several times a day that you love them. That will caress their hearts.
Daddy might have suspected something, since Christmas he told us that it was his last Christmas and that he wouldn't be here for a long time. That we will go to his funeral in May. I joked with him that in May, but in which year? He replied: "you'll see"...
For Christmas, he got an adjustable bed. When we assembled it, he told us that he didn't want to sleep in it because he would die in that bed.....He didn't like it from the first day. He sat/slept in a armchair in the living room for several weeks...after a long explanation, he was talked into it and started sleeping in a new bed. "Sleeping" can't even be called sleep. Because he wakes up several times a night to go to the toilet, to suck up his saliva, and you have to help him get out of bed every time. So for many months you don't know what a quality 7-8 hour sleep is.... Mom was the "scapegoat" she took the night services, I was more helpful during the day.
One day I met my father's childhood friend. He asked me: "Are you at home?" And does dad still go to work?" Me: "No, he's already at home. Come visit him." I didn't tell him that daddy was sick. The next day, a friend came and was shocked at what happened to his friend... Since then, he has been visiting him several times a week. Once he asked him if he would like to go visit Mr. Dean. That he is a very good person, open to all things. Maybe talking to him would help. Daddy agreed and we went to visit Mr. Dean. After several hours of conversation, confession, anointing, receiving the body of Christ, we came home and daddy felt like he had been changed. He claimed that his soul was relieved, that he was more satisfied and balanced with the whole situation that plagued him. He admitted that for a long time in his mind he wanted to meet the priest, but he did not tell anyone. In the corner of his soul, he wished for it, and God arranged it. My meeting with his friend was certainly not accidental...
When Daddy somehow got into mental well-being, his legs didn't obey him so much anymore, he only exercised on the bed. He was no longer walking or cycling. He was still able to take a few steps from the wheelchair to the toilet with help. He sat all day in a armchair or in a wheelchair. We went for a walk in the winter when the sun was shining, which gave him energy. He told us his stories from childhood, youth, adulthood. When he met our mother on the train and thanked God for such a woman, for all the years she stood by him in good times and in bad, for the way she took care of him now, he told her that another woman would have left him a long time ago, but that Mom is like his Angel, even now in the most difficult moments, she stands by his side and gives him all the strength and love. He told her: "I love you more than anything, you are my greatest love." "I love you all, I want to be here with you, but I can't anymore." He told us every day how much he loved us and he cried many times... Now when he was sick, he realized what is important in life. The first priority is family, love, loving all people and forgiving them. "If I had known what would happen to me, I would have quit my job long ago and enjoyed my retirement with you with family. And not now that I'm powerless, I'm only a burden to you." He didn't want us to worry about him...
We continued with our morning "rituals", the novena to St. was added to the prayers. To Charbel - a saint from Lebanon who works miracles... Everyone should wish for an "intention" for which St. Charbel should intercede with God. I don't know what exactly Daddy was begging for in his mind, but I told him to pray: "May God's will be done."
When daddy was "well" within his illness. Even though we already had to feed him as a small child, give him to drink, shower, dress him, he still managed the toilet by himself with help... But we got used to the new situation... After 6 months of care, I had to go to Spain - to sort out certain things matters. My mother told me to take it easy, she had found her own system for taking care of my father, that she could handle it herself. It hurt me to leave, but I knew that if his condition worsened, I would come back to help and be with him. Before the trip, my daddy told me that: "you will come back for my funeral in May." I didn't take him seriously...
He continued his morning rituals without me. Every day we called each other several times and for hours. Mom kept saying that she can handle it herself. When I wasn't at home, my brother helped mom with daddy. Imagine two scorpions side by side. Dad was a perfectionist and when something wasn't done as he imagined, it was immediately "fire on the roof"...
During so many months of prayers and conversations with God, daddy understood that he must love all people without distinction, even with their faults and forgive them. That time of my departure was the rapprochement of father and son. To accept him even with his faults and love him as much as we all do. It was a time to understand true love and find peace of mind. And he succeeded! Daddy understood that love is manifested by love. That love for God and devotion will lead you to the path of knowledge, to the path of light.
To be continued in part 4....
