Have You Ever Told Yourself?


Have you ever told yourself, I don’t know what to do, but when the time is right, I will know it.

This is how I have been feeling for a while now. I would think differently and probably not even bother writing this so I do not bore you, but it has been some time and my gut keeps saying,.now Terry, now is the time.

Yet I am pushing it back like it is water trying to go over the cliff. I am the sandbag and yet water trickles around my veins.water

I have seen it coming. I can feel his  pain. Yet I stand and do nothing but hold on tight for his life.

Today, the shower girl told me that Al was bending over much more quickly than he used to making it hard to transfer him to a shower chair.

Yes, I know he can have his shower in bed. Yes, I know things can get much worse. But what concerns me is Al’s livelihood. What will happen to the little bit of spirit once I put the stop sign out.

Al is getting very hard to transfer alone. I keep in mind that I am going to interview a gal tomorrow night to help put him in bed. But that is not the only time he transfers. What about the mornings? What about at his Day Program? What about the risk of putting Al in other people’s hands? What if he falls?

It is here. He is getting too weak to transfer. His legs scream out in pain each time he gives his all to transfer. It may be only three steps but the first one most of the time anymore doesn’t even get taken.skeleton

I know the way I send him to Day Program is through multiple medications to get through the day. He has a special wheelchair that lays back so he can nap and keep his swollen feet up.

I can barely do the holding of him any longer. The shower girl is struggling. I know I need to put a stop to the Day Program or cut his hours down, but I am struggling with the words.

I have spoken to Al about cutting down to half-days and he just starts crying. He loves socializing. He doesn’t ever want to stop. He can’t get from me what he needs from someone other than just a sister. He needs his own space and his own friends.

But yet my inner voice says it is time. How do I do it? How can I break his heart? I just don’t think I can pull it off. What will he have left? Home and his TV? At this point I don’t even know if his cars and coca cola could begin to satisfy his inner urge for normalcy.

He told me before his shower, through flowing tears, that he wishes Mom would just stick her arm a little further down to him so he could reach out and grab it. I hate being a pile of mush crap, but once again, I left the shower girl to tend to Al’s tears and I hid in my bedroom crying.

I want to scream at the top of my lungs. Lord, lord hear my cry. I am a coward Lord. Please don’t make  me do this to him. I will do anything for you Lord if you just take him home before I have to say no to Day Program. Help me Lord, hear my cries. Take this off of my shoulders Lord. Can’t you see I love him? Don’t you realize it will tear me up inside more than him not going? I beg of you Lord, relieve him. Take him out of his pain. Let him sit near you. Let me know that he is walking again, and most of all Lord, show me a sign that he is smiling.

53 thoughts on “Have You Ever Told Yourself?

  1. I feel your pain… It would be easier to back off slowly… Like maybe day program Mon, Wed, Fri, then to Tues, Thurs. They also have lifts to help transfer him. You can ask the high school for volunteers to come and spend time and visit with him. Out here they have to do some community service to get there diploma. Or a nursing school that would like to volunteer. Call insurance and find out about the lifts. I hope this helps you a little!

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    • Your suggestions sound wonderful but Al is on Hospice and no more funding for him is available. I have tried the volunteer department,even his own church and no one is willing

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    • thanks Cobbies. I am praying about it. The more I pray the more I hear the voice saying it’s time. I have tried to get Al to back down a day or two, but he doesn’t want to

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    • me too my friend. Hospice has gotten him his new lay down type wheelchair. They do so much for him, but they know his time is limited and so therefore so is his funding

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  2. When I was thinking about coming back, I was scared of what your posts would say. I wondered if there was going to be something that I hadn’t been there to help with.

    I know it is difficult for you at the moment, and I wish I had the words to help to, the words to say that everything would be fine, but you and I … as well as all the bloggers who read this … know, all you can do is make him as comfortable as you can. My thoughts are with you and Al, Terry.

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    • I am so glad that you are back. I know it is not fair but I lean on your friendship and your support. I just wish there was something I could do to make things better

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      • I am glad I can help in that way then Terry. I know you wish you could change things, but I know Al wouldn’t change you for anything

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  3. Sometimes, just like you would talk to a child, no more, or no, is needed even if the tears flow. Don’t hurt yourself in order to take care of him– you both can’t be ill at the same time. You are at your limit physically, the hospice is at their limit volunteering and he is at his limit with the illness. I know you both want to hang on, but please don’t let this be a detriment to your own well being. Caretakers like yourself have to know when enough is enough. {{hugs}} and love to you both as you adapt to this new challenge.

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    • there is no place for him to go. He will remain here until his time is up, but I totally understand what you are saying. I just don’t know what else I can do anymore but love him and try to keep him comfortable

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  4. It is time to just say no Al you cannot go and let him stay home he will cry but he is getting weaker and it is time for him to stay with you. Like telling a child no more snacks before dinner he will eventually understand. As for your prayer to release him and the Lord take him it is ok to pray for his relief and keep telling him it is ok to reach for your moms hand and go with her. I am sending you a big hug and wiping tears with you.

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      • oh my yes a divorce is grieved but totally different emotions, hurt, sense of failure, anger etc but grief of a loved one especially when you are the caregiver, Oh Terry I hurt for you and wish I could be there to support you and help you. Please know I am thinking of you and Al.

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    • Yes I wish I could but I just can’t and it hurts even worse standing by and not being able to do anything. Thank you for prayers. This is the most precious gift of all

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  5. Dear Terry, I am praying for both of you, also just now when I am writing this. So extremely difficult, in many ways, then again there is only one answer,which you already feel in your heart. You and your brother are walking his last miles together, and you are filling this journey not only with love, but with resting places with interesting things, with joy, friends and new experiences, all for your brother, to make the road lighter. Now the time has come to make those stops along the road different. He can no longer go out as much. If you act on that, there will be a way. If you do not act on that, you will both be exhausted. Every transition is painful, from what I hear I think the time has come to go into another leg of this journey, a time for rest, peace and tranquility.You are not taking anything away from Al, you are creating the environment that is best for him. Then again, perhaps rest will do him so good that you can allow outings some days?
    Would it be possible to tell him that you take a week or so without him going anywhere, and then you’ll both see how he is feeling then. Even if he knows how serious his condition is, there is no need to emphasize the finality of not going to Day Care just now? Sometimes we can only take the truth in spoonfuls.
    I am writing too much, and you are a wise woman in the loving hands of the Master of the Universe, so you will know what to do, and you will have strength and wisdom to do it. Love, Solveig

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    • You are not writing too much. I like it when we can actually chat on here. I see your point and think maybe it is a good idea about introducing some time off, letting him be the judge on how he feels, instead of him feeling like I am controlling his life. It is very tough to make this decision as Al seems to believe he doesn’t have much left in life. I so understand this but there is only so much I can do alone with out help and he somewhere inside realizes that bed feels better. For today since 2pm, he has not been out of bed. He is very quiet tonight, but not opening up to me. I can only imagine what he is thinking. Thank you so much for your comment. I really appreciate it and the great idea!

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  6. Okay I know this might seem a strange suggestion but have you considered putting up a notice in your doctors office, I am sure there are lots of other people in a similar position caring for someone who because of health problems, maybe if you could find someone in your area you could help each other out, I am not suggesting someone to leave Al with but rather if you could find someone who is also in need of company they and their carer could come visit, think of it a little like an adult playdate where they get to socialise but you and the other carer get adult conversation with someone who totally understands where you are coming from

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    • I have never thought of that, but I did interview a young lady tonight who may be able to help me put Al to bed at nights when it is the toughest due to his being so tired. She is to let me know. I sure hope it works. I don’t want him to have to stop his Day Program, but I can’t keep the illness from progressing. I will talk to my doctor’s office and see if something like your idea is allowed. Thanks Paula, it is a good idea

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  7. Because of the way Al processes things, it’s very possible that he would react the same way no matter when you made the decision unless he went comatose or something. The best you can do is keep Al going to Day Program as long as you can and then call it. There is no easy answer except what you did — cry out to God. If He chooses to keep Al here past the time he can physically go to Day Program, you will have no choice. I know I am seeming callous and brutal, but it is what it is — you will have to muster up every ounce of resolve you have to make that decision when the time comes, and then comfort Al as best you can.
    Any time you need to talk, tell me you need to talk, and I will just shut-up and listen. Hugs and prayers for you, Terry, as you and Al go down this last stretch of the road together.

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    • after meeting with Hospice yesterday we have decided that as long as I can pull it off he will continue to go to Day Program. Taking it a way from him even a day or so, the nurse said he would stay home and will himself to die

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      • I suspected as much as well, and so I do hope Al is too tired and weak by that time to care. But either way, you can only do what you can do — I don’t know how aware Al is about being able to understand the concept of resting in God’s comfort until he sees his mom, but that might be a direction to go between now and then. But you know Al better than anyone else, so you know what approach would work best for him. I feel so bad for you Terry and I’m always praying for you and your situation — you are going through such a tough time. I am heartbroken for Al as well, and pray for peace and comfort for him.

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      • I am not sure what he really understands. Part of him is scared, and then other times he ask questions like, can he take his coca cola items with him. Hospice says he will not want to get out of bed eventually and he will miss Day Program but will not want to go. I am waiting until this point gets here, letting God deal with his perfect timing

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      • You are so wise, Terry — Hospice has seen this chain of events so many times, so they must certainly know what they are talking about. Between you, Hospice and God it will work out for the best for Al, whatever happens.

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  8. Dearest, Terry … my heart cries for you both. I don’t know what to say to ease your hopelessness and despair – and I know you know that it’s not getting any easier for neither of you.

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  9. Harder, indeed. As I try to catch up with all that’s happening, I get to where I dread looking at the next post. And yet, I know that there is hope in the Lord, and strength, and peace.

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