Today Al had a big day. It wasn’t the kind that you go to the big fair and ride the huge roller coaster. It was the kind that can dig deep in the heart, a slap in the face wake-up call type day.
For several days Al has gone on about his funeral and talked about this illness and why he has it. It is a worn topic but gets repeatedly read, page by page each evening.
Last evening he thought that his illness stayed home while he went to Day Program. Also last night I saw the strangest thing on Al’s knee. He pointed it out to me by saying, “come look at this.”
I watched his knee and it would turn purple and then go back to normal color. His toes were matching the beat of the drum. I brought it up to the Hospice Nurse this morning when we met.
She explained, “his heart is very weak. It is trying to pump to all the organs but the weaker it gets, the more it has trouble reaching the legs and feet. The heart decides it will stick with the organs and let the limbs go and then try it again later. This is what is happening. He is losing oxygen in his legs.”
I stared at her dumbfounded. She also went on to say that the Hospice Minister was meeting us also here. They wanted me to stay quiet while they talked to Al. My stomach started to churn as I knew this couldn’t be any sort of party I was attending.
The conversation I heard went something like this. ” Al you are a very sick man. It is no one’s fault. It isn’t yours nor is it your sisters. This illness isn’t going to get better Al. It is only going to get worse. One day you will not be able to come to Day Program because your body is going to become very weak and you will not want to get out of bed. I think it is time that you start preparing and ask God if he can take you home while you are asleep.”
I thought I would die right there on the spot. My legs became weak and I thought I was going to collapse to the floor if I didn’t grab a hold of something. I backed a way and the three of them had a private conversation with questions and answers.
That all ended and poof the nurse and minister left. I left also and like a robot went and got groceries. Forget the crazy idea of stopping at Dairy Queen for an ice-cream, I just wanted to go home.
When I got home I put everything a way. I looked through my mail and started prepping supper. Before I knew it, it was time to get Al off the bus. He was quiet and stayed quiet through supper. He only ate 50%. I didn’t say anything. I had to force my own self to eat too.
As I was washing him up I think my jaw fell to the floor as Al patted me on the arm and said, “sis, I think I understand what is happening to me now. The minister and nurse made me see things. They helped me understand. I am going to die. They said I could pray for me to die in my sleep. Could you do me just one favor sis?”
” Sure bud, anything, you name it.”
” Will you make sure I die in my sleep? I don’t want to know it.”
I couldn’t help it. I lost it. I cried like a big baby right there. I grabbed my brother around the shoulders and the two of us cried together. When we finally parted, I continued to wash him up and he said, ” I want to take a nap. I am tired. Maybe this will be my lucky nap.”
Above is a photo of cards that you here at WP have sent Al. I bought him the little miniature case of Coca Cola bottles in their own little case.
Thanks to all who have sent cards and caring words of comfort. If anyone still wants to send him cards, please email me at
tellmenolies2004@yahoo.com
and I will give you the address to send the card to.
I am out of words and out of tears. I am done writing for tonight. Hugs my friends.
Related articles
- The Truth Hurts (terry1954.wordpress.com)
- Another First Day (terry1954.wordpress.com)
- My Wish For Al, My Brother (terry1954.wordpress.com)
- I Think He Is Tired (terry1954.wordpress.com)
- Al or Ghost in His Seat (terry1954.wordpress.com)
- Update on Al (terry1954.wordpress.com)
Who I am 
Hugs to you new-found friend. I’m glad we connected. I’m glad.
cate
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I am glad you are in my life also Cate. Having friends that are so wonderful makes life a little bit easier to swallow
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we sure do need each other. 🙂
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I agree. I always say people come into our lives for specific reasons, and I know why you are here. You are genuine and just what I need when I am sad
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Hugs to you, Terry. And God Bless the Hospice people. What a difficult job they have!
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Yes, I imagine even though they do this day after day, it is hard for each one
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You are one of the most compassionate people I’ve met, even though we’ve never met in person. You have a lot on your plate and some major challenges in life. I’m thinking of you and praying that God will sustain you through all of this.
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Rusha that is so kind of you to say. I feel like we know each other. We have been blogging friends for a while now. God bless you for sending your friendship to me. Thanks for the prayers my friend
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love you Terry…I have been wrapped up with my sister these last few months with her ailing husband…He passed away this afternoon …we had just been there this morning …went quickly after Hospice
took over care…and doctors spoke straightforward to him…
So maybe this is best…who knows…when we love…we love hard…wishing you the best!
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Al somewhere seems calmer knowing the bare truth. It is good for him but I have a hard time seeing through the fog. I am sorry for your loss Marilyn. May God be with you and your family
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thanks Terry…
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I’m so sorry you’re hurting but so glad Al seems to have gotten some peace. xo
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he did actually. It is like he really knows now
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That sounds like a gift to him.
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I think it was
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A prayer for you, Al and all the care givers. God Bless you.
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thank you Seeker. Al is more at peace now. I guess for him it was a good thing to know
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Oh my goodness, I cried too! It sounds like those Hospice people knew exactly what they were doing, and Al sounds like he is feeling a little calmer about things. Going through this is so hard on you, too, and I know it’s just hard to even think about, so maybe this talk that Hospice had with Al was a Godsend. Hugs and prayers for you both, sweet lady.
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I was so amazed at how well he did yesterday and last evening with the news, but this morning he was all tears. I imagine it is a sinking in feeling a little at a time as it is for me also. Thanks so much for being a very close friend Becky. I need your friendship
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OMG I still haven’t sent a card! Can you email me your address – sorry Terry!
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don’t be sorry my friend. you have a very full life. I will email you the address though
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You are holding on Terry…it is the best one can do. You are weeping – it is what one must do. And you are with him – as no one else can be. Happy to see my card among the many – but far more overcome by the experience of AL’s conversation with the hospice worker. So much love being sent your way
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thank you so much my dear friend. Every night at supper Al goes through his cards and looks at the pictures like it is the very first time. He did well yesterday I thought but was all teary eyes this morning.
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Oh, Terry. I wrote you a novel after crying through your post and accidentally closed my internet page. How to repeat it all? I want to throw my laptop against the wall.
I will have to condense everything I said, and please know this is being written by someone with a painful, chronic illness that is degenerative in that I am falling apart piece by piece.
I think the minister was right to have that talk with Al, not that you would want to hear that. I understand. But, Al is at peace with his life, and maybe for the 1st time from all your stories. For those of us who are sick, different parts of us blossom and we gain new skills and strengths and many of us are not afraid of death as it is an end to the suffering. I share this mindset. I know these might not sound like comforting words, but it would be worse if Al were afraid. I think that will give you solace in the end.
This is the time to cherish the seconds. When Al’s body has had enough, you will be with him–that much I know. What more could Al ask of you? You are always the sis he can rely on, but he is okay with the hand he was dealt now, and that is the final stage of the grieving process: acceptance. Many never get there at all.
Do remember one thing. Blogging is what has gotten you through this very bad chapter in your life and your blog will still be here when Al’s time comes–and please don’t stop. This is your catharsis and I get worried you’ll cease talking as I call it and be all alone. Besides, WP would never be the same without you on it.
Love and big hugs to a brave, brave woman,
Alisa (A)
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I couldn’t help but cry as I read your comment. You understand so well what Al is going through because you carry the same feelings. Acceptance is something some of us run from, people like me. I will do anything to not have Al hurting in any way, but the truth shall set you free. He did so well last night, but he was teary eyes this morning as he was speaking about the two year old on the news that was the best man at a wedding and then died the next day from cancer. Al is relating to this story very much. His tears broke my heart but I said nothing as I knew he still needs to talk about. This chapter will remain open until Al can no longer converse with me. Afterwards, i plan to continue to blog. My own healing will be ongoing where as Al will be healed instantly. I could never leave my wonderful friends here at WP. Not only are you friends but you are my rock. I would crumble into pebbles if I left you. I love you my friend
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I love you too and I do have that odd insight from my own debilitating disease(s). Al is seeing that others who are sick are like him (the boy on TV), which is how I am. We’re all in the same pot and I’ve had Al on my mind today as I know PD the way you know it (from my step-grandpa in my case). Well, you know it better, but I am familiar with it.
I’m so glad to know that you will use your blog as a tool to help you down the line. This is really essential as some people never move on from there, just like they never get to acceptance. Per the latter, I’m not there after 12 yrs,, so don’t beat yourself up. For me, it goes against my A-type personality and is such a struggle. I see you as being the same in many ways.
Big hugs. I will try my best to check in more than once a week. I hate excuses, but we’re trying these special contacts for my vision that are prosthetic devices (look like huge, plastic contacts) and they hurt and leave my eyes worse, so my vision is going to be worse until we can hopefully get a pair that I can wear p/t at least. Then I hope I can be online more (and see loads better!). The body, however, is just stuck in rare disease land (no research/no cure).
A xoxoxoxox
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You know that I think so highly of you. You do your best in visiting my blog under your conditions. I see you and I as similar creatures also. We want the same things in life. Less pain, more laughter, more smiles, a better life. We will get through this together until we can no longer do it. Big hugs my friend
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Hugs for you and Al. I have a unique outlook on death. It comforts me and I hope it remains a comfort when it is my time to leave this world. I believe we are all energy (souls). We belong to a great(er) collective (God – Force) and because we are that collectives children, we are connected to each other – – more so than we ever really grasp. My pain is your pain, my joy is your joy. We are all students here and beyond, seeking our true-ness; love unconditional. I honestly can’t wait until my new journey begins. It is an exciting prospect that we soul’s sharing a human experience will live again, not as we are now, maybe not in another physical lifetime. I haven’t been able to grasp the terms ‘heaven’ or ‘hell’, however this thought about shedding our human existence when the body dies, knowing I live eternally, gives me such a peace of mind.
Grief, the emotion after death is a tough-y though. You alone will shoulder that. Hopefully it won’t hold you in it’s arms too long. I will mourn Al’s passing with you and send you hugs from a distance. May God grant Al a peaceful passing. The disease seems to be one that might just allow that to happen. With love and connection…
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I love your outlook on life. I keep telling Al his body will be all brand new like he came into this life. Untouched and wonderful. No more tremors, no more pains. Laughing will replace tears. Missing parents will once again be with them. Life is what we make it but God promises us an even better life when this chapter closes. i will mourn, oh my gosh I will mourn, but part of me will be so happy for Al as he will be a free bird once again able to fly.
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i have to say as a mental health professional and someone who is dying that what they did was outrageous!! yes he needs to know that what is happening is not someone’s fault. he needs to know that he may not want to keep coming to day program and that is ok. why would anyone tell him to pray for death in his sleep? we all know that is how it is going to happen. his heart/my heart will become too weak to beat and so we will close our eyes and be gone.
i am so sorry anyone would do that to you and al. you deserve better
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I know that Hospice is an excellent program, but I have to admit I thought the whole scenario was a little rough around the edges. To me it was ripping the hope a way from Al. Like ripping the rug out from under our feet. What does he have to cling to now? I can only hope that I can provide enough love and support for him until he no longer needs me
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Dear Terry, thinking of you, praying for you. I am not able to write a short comment, that says everything, sometimes there just are no words. I’d give you a big hug if I was around though. My own experience is that growing towards acceptance,” this is the life I was given, and now it is coming to and end”, is a process that does not follow the same pattern for the one dying now and the ones left to be dying later. We all have to go through both those processes though at different times of our lives. Love, Solveig
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Thank you for a very wise comment. Al seemed to do so well the day he was told, although I thought it was awful bold with words leaving nothing clothed to the mind. The following day and this morning, there have been more tears than the day he was told. I imagine he is processing it his way and I am processing my own pain of his illness
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I was crying with you two here….. and yet it is good to e open about this painful subject. Al seems to have understood it and I would ask for the same as Al. I understand him and it is so hard for us, for you! It is good to talk with Al about it and that it is not a closed subject. It seems hard and so rough what the hospice people say but I guess they have seen it and it is better to tell the truth and not hush over it.
It was the same when the doctor told my mum to take my dad home so he can die at home. It wasn’t meant nasty but it comes across awfully rude and it hurts. You are such a strong woman and you need to let your emotions lose and cry, you need it. Much love and a huge hug!
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I thought to myself as they were speaking of how many times they have done this over and over with many other patients. The difference was this was the first time for my brother and me. It was hard, it hurt deep and yet it woke eyes up that were half closed. Thanks Ute
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