Hour By Hour


My heart is heavy burdened tonight. On the outside I look alright, but on the inner soul it is breaking. My friend is leaving Monday morning. She has been my rock and I am very thankful for the time she has stayed with me.

But a sadness remains as Al does too. I so didn’t want to be alone when that dreadful last breath was taken. God has his plan and I had my desires. The two do sometimes not coincide.

Last night Al took another turn for the worse. His blood pressure went very high. It was 160/120. Quite frankly, it frightened me to death. I could not find his heart beat as it was too soft.

His one lung is swollen. It is obvious to the naked eye. One side of his chest is swollen. His one side of his face was all puffy. His eye was almost swollen shut and his face was puffy.

His breathing was very shallow. I think one time he followed me with his eyes, but for the most part I don’t believe Al is here with me. He stares a lot, looking at nothing. He is now on oxygen. Water is given very little. Baby food can no longer be given in the meals as he chokes on the very tiny, soft foods. We are down to applesauce, and very strained veggies.

I don’t understand any of it. I don’t like the way it is going. I am questioning everything that is happening and what isn’t. I have even put off blogging because I have nothing good to say.

Who wants to hear or read someone’s blog when they are so sad and frustrated? But I had to write. I don’t know if it is healing to me or not, but I am getting it off my heart and onto paper.

I am living almost hour by hour, waiting, watching TV and not hearing it. Sleeping and waking up too often. For me, this needs to be over. For Al, I pray it will be soon.clock

93 thoughts on “Hour By Hour

  1. You are absolutely going through all the normal motions Terry….I am so glad you do not have to work, or have children to take care of or anything else that takes your time, that you are so tired and exhausted, so at least you do have that to be thankful for. We are listening and you can blog anytime…I have wondered about you, and have been concerned, so I am glad you did blog…don’t stay away to long…at least jot a note to say something….Complain, scream, yell, cry, do what you have to do….we don’t care…just let it out….
    God Bless you, and you are not alone, you have many many people with you, and from the other side are with you too…

    Bless you both…

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    • Thanks so much Hannah. I am blessed, indeed, and so get angry at myself for feeling so sad. Many others have life much worse than me, but sometimes I can not see outside my own box. Thank you for caring and having been a friend for so many years

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  2. I am so glad you posted Terry. I had been thinking of you and Al all day.
    God definitely has His own plan for the timing of events and He obviously has a reason not to take Al home yet. I am praying you can find peace and get some rest. You are doing more than any other sister would have done…a true inspiration to us all.
    Hugs,

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  3. You keep on writing as you feel led. We would be quite shallow if we were only with you in the easier times and if we left you as the journey becomes more difficult. Sending thoughts of strength, release, and peace.

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  4. Praying for comforr for you both and strength to make it through these days. You type and we will listen Terry. We will listen because we care. I honestly thinj you should do your birthday my sweetie. I know you dont want to and I know you don’t feel like it but we must look at the good in every day. Bake a cake, light a candle and go see Al. Xx

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    • What a beautiful comment my friend. You always have something good and positive to say to me. Your suggestion is beautiful. I may just do that. I also wanted you to know I have nominated you for the Field of Flowers Award

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      • Oh aw wow thank you!! Thats so lovely never been nominated for anything before! I hope you can have a happy moment with Al today, always look at the beautiful things in life and birthdays I believe are one of those days where we should always have cake. Have you thought about putting funny audio books on for him to listen to since he cant watch the tv all that much anymore? Theres a website full of free downloadable audio books I just cant remember its name 😦 sending you both love and prayers my sweet x

        I put both your names on the prayer roll at our latter day saint temple in preston, england 🙂

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      • Thanks so much for adding our names. I have never thought of audio books, but this is a great idea. I shall look into it, thanks so much!!! HUgs

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  5. BIG… BIG…. BIG…. HUGS…. My Terry…. I pray for peace for you both… You know Al doesn’t want you to be sad… Remember All the good times and keep them in your heart…..

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  6. So sorry to hear of all the continued suffering Al has to deal with–and you, Terry. I don’t understand it either, and I know I’ve told you that before in regards to my own health issues. Why not the child molester? Well, I’ve always believed in fairness.

    Per blogging, we all deal with these monster diseases in time–whether a family member or a friend (or ourselves). People really don’t know how to react or what to do, so while blogging is therapeutic for you, you’re also teaching others that they CAN deal with someone else’s failing body or mind and how to be a source of support at the very least. Lord knows my family never learned that lesson, so I think you have a lot to offer the world and I see you one day working with other caregivers and imparting all your wisdom. It’s just what you do…

    Hugs and love, A (who had an injury to the head and couldn’t be online for awhile)

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    • I feel better knowing you understand. It does seem there are so many others out there that are wicked, cruel and mean, that could have been chosen. I don’t understand a thing anymore. I hope you are feeling better my friend. I also have nominated you for the Field of Flowers Award. I hope you can accept. Big hugs

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      • Thanks again, Terry. My forehead is still looking pretty bad, but I hope to just have a nasty scar in the end. It could be worse. I still hear you–everything used to make sense to me for the most part and now I’m just lost (x13 years)…
        xo

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      • Thank you so much Terry.
        I know this might sound a bit silly but I haven’t done awards so I don’t know what this is for, and I am sure I definitely don’t deserve it. But you are very gracious to think of me and I appreciate that very much, for as what you are going through with your dear Al, I should be the last person to be thinking of.
        I very much hope after your friend has to leave you can get some extra help in from the carers, you really shouldn’t have to face this alone any more and it deeply saddens me that the whole hospice care system is letting you and Al down. I know many of your friends and I on the blog would want you to imagine we are there and holding your hand through this, we may be thousands of miles away in reality but want to give you our strength in whatever ways we can
        Take care and look after yourself Terry. Thank you again for your kindness, though I would like to think I have made new friends and that is always more satisfying than any award could be for me (((Hugs)))

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      • I am glad you like your award. Awards are for the good post you write. So enjoy it on me!!!! I do imagine so many of you here with me and it helps so much. Thanks so much my friend

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      • The stress and exhaustion must be so draining to you Terry, they say life is precious and I think Al must be holding on to as much of it as he can, As hard as it is for him to cling on he is also not letting go, I realise at some point there will be a moment when he has no more control over this and he will find his peace.

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  7. You know you are both in my thoughts, and I have been praying for Al even though I very rarely pray. I will ask today for a miracle. The last time I asked, I got one, so I will try again for you and Al

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  8. I feel bad that I’m not able to do anything for you physically or financially. Reading your posts, feeling compassion for you both, and sending you my love is the least I can do. So don’t ever feel reluctant to share the difficult stuff. I hope writing about your suffering, and knowing that people are reading, helps to ease it, even just a little.
    My love to you both.

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  9. Terry, I echo what others hve written, but I want to ask you a very serious question and I want you to think about it, discuss it with your friend and with hospice. Do you think Al may be hanging on because he does not want to die at home with you, alone I know you said at one time that he wanted to be home but perhaps he is afraid to do that to you. I don’t know just a thought. That and I wonder if you will be able to walk into his room after he passes without it being so bad for you because he is having such a rough time releasing. I know I couldnot live in our old house because even though my daughter did not die there I saw her in every room, I would pass by the stairway and see her coming down the stairs in her bathing suit going out to the pool, or to prom, carrying my grandson just too too many memories. Well, enough of my unsolicited remarks…hugs and love my friend.

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    • I don’t know about your question, I will have to give it some thought. I do know that it will be very hard to live here. Everywhere I go, I will see him there, especially in his bedroom. It is so hard. I have some idea of what you go through

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  10. May your friend have a safe trip back. SO nice that she was able to be with you for the time that she could.
    Hang in there dear Terry.
    If writing helps you – write. I am here for you & I know lots of others here are too.
    Keeping you & Al in my heart & prayers.
    {Hugs} to you both

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  11. Terry I am here in bed with you on my mind. I wish I could reach through my cell and give you a huge hug. I pray this ends soon. You mentioned feeding him. Is I conscious enough to do that. I have heard that the need for food and water at this stage stops as organs are shutting down. My heart aches for you and Al . Our blessed Father, please bring your son home. Sooth the hurt and bless him with your grace. Terrry needs your comfort and peace as well. I call and ask for help from his angels. Help him know it is OK and he can go to the light. It is time for him to go. his journey is complete and he served you well. It is time for true peace. Thanks be to our heavenly Father. Amen.

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    • I can feel your hug and your prayer sounds so familiar as it is very similar to mine. Thank you and big hugs my dear friend. I wish people did not have to suffer like this

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  12. I have just started blogging about My life with MSA, though I am not the one with the Illness it is apparent that it affects the entire family.
    It took me quite a few moments to decide whether or not to reply to this post, I don’t really know how to appropriately.
    Thank you for this post,
    Even though you are a stranger, we are the same person.
    I am very scared of the end, ‘my end’ for my Mother in-law, While I am still years away from it, the diagnosis has bought to the forefront and it is there to stay.
    Please continue to write, say anything and everything, because one day sooner than I would like, I will be in your exact shoes, hoping and praying and I need to know that in the end things will be ok.
    I hope relief for the two of you comes soon, and I hope you will have love around you when it does.
    Thank you again for this post xo

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    • Hello my friend, for every season there is a reason, but why we do not know………..We hate the sorrow we hate the pain, but God knows why this is happening. I am but a branch hanging from the trunk. I feed not from the ground but from the hearts of my friends. Our hearts are heavy and the questions, so many. I only hope that I can in some way bring comfort and knowledge from writing my words of our experience on this long journey of MSA. I pray for you family and I pray for you. God will get us through this and there is a light at the end of the tunnel. As the days slip by and the body becomes unknown we see the light from God coming to heal, to make all new, a promise for hope to carry us through until the one day comes we will once again see our loved ones smiling again

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