Within The Egg Shell

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Al lives within his own world. He doesn’t look outside his mind very often. Trying this in the past caused too much confusion and break downs. It is much safer to stay within his own realms.

Many have claimed to know the answers. Hooking up machines, filling out forms, spending mega dollars for yet more unknown answers. Stirring the embers within the soul causing fires to erupt. Bringing more anguish from that point on.

Abuse of the tongue remains locked with inside the walls. Struggling to bring them to the surface and release to the open skies is very hard work. Counselor’s in abundance working their magic wands. They are sure they have the fix. The problem still remains within the egg-shell. This has been cracked before. Now leaving bits and pieces of runny memories to slip through the cracks. The ability to not handle this causes more grief and fear than before.

Why should Al be forced to endure this agony time and time again?  Can’t we all pretend that we really don’t know the deep answers to each soul that walks this earth? Is it wrong to just let things rest?

Must we all fit into one carton of eggs? If we accept the fact that eggs come in many shapes and colors, then is it alright to accept that everyone does not fit under one umbrella? Is there anything wrong with admitting defeat?

I want to see peace remain in the days left to breathe on this earth. Others disagree with my too common words. We must push, push and push more to make him whole again are their words.

What if Al can never be what we consider normal? What if the best we are ever going to see was in the yesterdays. When is it time to release this special-needs bird and let it rest in its own nest?

Some say you are causing mountains out of mole hills Al. Others believe you want attention. Maybe you do, I do not know for sure. I certainly can understand if this is the case. You were the one tormented your entire life. How would I react myself if the shoe were placed on the other foot?

I am tired folks. I am tired of beating my head against the cement wall. The only thing it does is make me more tired. Frustration kicks me in the ribs and I fall to my bed crying. Your eyes of pleading remain to haunt me at night. I can see you are whispering to me, please make them leave me alone. I have enough to do to handle my every day routine.

I am tired, so very tired. There are parts of me that want to race into Al’s room and scoop him up in my arms and head for the solitude of the mountains. To lift Al up on the highest peak. Raise him into God‘s warm hands.

I pray many times each day for peace to fill you up dear brother. It has become such a challenge I am almost beat down to the ground. I don’t know if it is the sister in me. Or maybe it is my relationship with the heavenly Father. Or maybe it is all the pressures that surrounds you to be more like them. I look into the heavens as I sit here writing. I pray  out loud to God, Lord you know my heart. You also know Al much better than even I do. Show me God how to handle this delicate soul walking this side of earth. Let me be strong when I need to be. Let me feel compassion and give me the understanding my dear Father to see Al’s side that he lives in. Amen

 

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49 thoughts on “Within The Egg Shell”

  4. This is very difficult. You are not looking for a solution to bring him back to “normal”. You just want him to find peace where he is. Have you spoken to anyone in palliative care? They specialize in comfort care rather than curative care. Unlike hospice, the person doesn’t have to be terminal with 6 months to live. Instead, they are at any state in life and in disease and are looking for pain relief and other care that allows them to live more comfortable lives.

    I just get the feeling that many of the people trying to help Al are really looking for a way to make him better and he ends up disappointed.

    It is just a thought. My feeling is that much of our medical care is disease oriented rather than patient oriented. Good luck to both of you.

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  5. Don’t blame yourself if things turned out the other away around, don’t feel pity for him, don’t feel that you failed, cos you haven’t. His soul knows better on what he wants to do. His energies though and soul decisions have an effect on people around him. I send you all my love, many hugs my friend and have a wonderful Monday!

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  6. When I read the above article I imagined your thoughts as being a runaway horse. Picture that runaway horse Terry, I hope you can pull in the reins and bring it under control because when left to its own devices, it will just continue to run wild. You are definitely more than your thoughts. You are a caring, – sometimes frantic (understandably so) – individual who is doing the very best that you can. Because you’re doing the very best that you can, it’s enough. I hope you start to believe that. And P.S., being normal is highly overrated.

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    • yes I agree, Normal is what is in the mind of each person. I just want people to leave him alone at the nursing home and quit expecting so much…………is that too much to ask?????

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  7. Terry, my dear. Don’t be upset over Al’s state of mind… he are happy there, don’t get upset about it.
    My former employee – his father,the founder of the company, is very dementia since many years back – and when I asked him about his father. He said something that will always stay with me.
    He said; Dad is away with the fairies and he are happy where he is – and we are happy for him – so we the family have accepted his happiness.
    I think is so unselfish and beautiful said. Don’t be sad .. over Al mental status, because he are safe and happy in it.

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  8. STOP IT STOP IT RIGHT NOW!! you my friend are beating yourself up and feeling guilt, frustration etc but no need YOU are a child of God and in so know that it is His will not ours that must prevail! things may not be exactly as you want them or any of us want for Al but for right now it is what it is…give your self a rest my friend continue to pray for God will answer in His time depend on Him as you have don’t let up. all will be well, Al is where he is mentally and physically and the pd will do what it does, just realize that, do what you can to make him comfortable and know that in the end you are the one to make the decisions for him not anyone else here on earth. His capacity for reasoning now is different than when he was well he is more in the now than what could, would, should be of the past. right now he needs physical comfort, not hungry or thirsty, he needs rest and relief from the physical pain thru meds. that is his basic needs most of all he needs his loving sister to be kind and gentle to herself so that he can enjoy his time with her that she so graciously gives out of her love. Not so when she is exhausted, tense and depressed worried etc. stay strong my fierce friend all will be well Love and prayers.

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    • thank you so much Len. If I could reach through the screen and give you a hug I would. All I want is for Al to feel comfort. I have a meeting scheduled for tomorrow and I am going to make this very very clear

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  9. when doing my training we were forced to choose theory we would commit to using for all our patients. some actually stick to that but more are like me and use what works based on the individual.

    dr’s are trained to just keep pushing until the patient quits, dies or can be transferred to another dr. i have been fortunate to find a dr who respects and understands what my limits are. i had an echo a couple of weeks ago and the dr who read the results wanted me to come back for another test. my dr knew i wouldn’t choose to do that and he agrees with me.

    if you have accepted al’s condition you may have to let the drs know exactly what you want from them. you have the right to decline procedures and tests that are not going to benefit al.

    i will keep you in my thoughts and hope resolution comes sooner than later for you both.

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  10. I think maybe for you (and me too) it is a matter of accepting the reality of what seems unacceptable and, yes, this is definitely an eggshell situation in so many ways. Don’t beat yourself up, Terry. It is what it is – an imperfect world. I wish I had better words of comfort. Sending love – Juliexxx

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  12. Terry,

    Your friend letstalkaboutfamily, who suggested palliative care is very wise. Palliative care is designed to meet the patient’s needs, giving them comfort measures only, rather than trying to cure that which is incurable, outside of a miracle, which only comes from God. Please do consider looking into this, and remember, my friend, the facility must do what you, Al’s power of attorney tell them to do.

    Having worked at a skilled nursing facility, I can understand their side, which may be helpful to you. You see, they have worked with many people throughout the years, and most truly do want to do what is best for their patients. However, they struggle with the facility rules, what the doctor tells them is best, and with what the family wants, and all too often, all of these things can conflict with each other. This is why you are so important to the process.

    You see, my friend, you knew Al before the disease, and you have known him as the disease has progressed. You alone, know Al’s history, which does play a huge part in this. Ask the Lord to give you wisdom as you meet with everyone today, and share Al’s perspective. When they tell you that Al is playing you, or whatever, gently, but firmly remind them that though they may think they know Al, you have spent a lifetime with him and they haven’t. Therefore, you know him better than they do.

    Listen to their suggestions, and don’t feel that you have to resolve anything today. Instead, take their written suggestions home and pray about them, asking the Lord to guide your decision. Also, ask them about Palliative Care, which may or may not be through Hospice, and pray and research this option.

    Meanwhile, tell them that Al is tired of fighting against this disease, which, barring a miracle from God, will ultimately run its course, and you no longer wish to aggressively fight it. Instead, tell them that you want them to make whatever time Al has left as comfortable and enjoyable as possible. Tell them that you are more interested in the quality of life that Al enjoys in his last days, rather than in the quantity of life.

    Above all, my friend, hold fast to Jesus. Walk in His Spirit as you go to these meetings. Try to see the nurses and the aides through His eyes, because I’m sure there are many who truly are doing the best they know how to do. It’s just that they deal with these issues on a day to day basis, and it is too easy for them to lump all patients with this disease together, rather than remembering that just as those who are well are all different, so too, are those with Parkinson’s Disease.

    Much love to you Terry, as you go forth, fighting the good fight for your brother. And remember, it’s so important to ask the Lord to help you see Al’s caregivers through His eyes, because they may be doing the best that they know how to do, and they may just need you to remind them that each of their patients are different, and each requires a different approach, as Al does.

    I hope this is helpful to you Terry.

    God bless you,
    Cheryl

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    • I felt such a connection with you as I read your comment. You are informative, sincere and a caring woman. You have given me wonderful advice and I will act upon it. Thank you so much Cheryl for caring and being who you are

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  14. Terry, it’s called love. What you feel for your brother is nothing short of that. It’s natural to want to protect, help, sheild and shoulder the burden of those we care about. And yes, in the midst of it all we feel overwhelmed, confused, burnt out, angry, tired, alone etc. But as you know, you are not alone in this battle. I’m amazed how, when we feel like we can’t go on, that’s when strength we never knew we had kicks in to allow us to go the extra mile and/or another day. Where you seem to give out, God will help you to continue. My prayers, hugs and love I send you. Valarie

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