Gut Wrenching Pain In My Heart


It has been strange around here, Al fell last night. He fell between a base against the wall

Relative direction...

and his recliner. I had put up so much of his collectibles on to shelves, but there were still

several items on the floor, all hiding right where he fell.

He was confused and he did not ring his bell to let me know he was getting up. He has a clock sitting on his table next to his bed, only inches from his face, but yet he got up, did not put his glasses on nor did he use his walker, and he said that he was going over to the opposite wall of his bed to see what time it is.

An open scratch on his behind, but other than that, nothing happened. I was able to help him get up, but my mind kept switching back to the coca cola glass bottles sitting inches away from where he landed on the floor. He landed on a musical reindeer, that stood about a foot tall and smashed it to pieces. The bottles were sitting directly beside the reindeer.

After I checked his body out for red marks, blood and bruises, and got him safely seated, I picked up one of the bottles and showed it to him, and I told him how lucky he was because the way he fell, he could have taken a bottle right through his eye.

He started to cry and said he does everything wrong, which makes me so angry, because I never tell him he is wrong. I do que him a lot, guide him in the right directions of different things, but do not ridicule him.

He was very quiet the rest of the night, as he usually is, when he falls. I believe he gets shaken up mentally when this happens. He remained quiet today also, he even without permission or asking me to help, leaned over and moved those items behind the recliner, which is what I have been trying to do for weeks. I told him that he should have at least let me know he was going to do it, or have me help, because leaning over forward, is asking for a fall. He cried again.

This afternoon the therapist came for her last visit, and also the nurse came. She has two more visits to go then all home health care is done. After being fairly quiet today, Al let loose when the two ladies were here.

His tremors were a wreck, flying all over and rapid movements. He burst into tears, and he told them how he was stupid and a retard, and I did not want him here, and he was a failure, and I wanted all of his stuff out of his room .

None of this is true. His being down on himself is his feelings alone, and no one else’s. I do not want his room empty, he is mad because we are rearranging things in his room, and Al doesn’t do well with change.

Both the nurse and therapist tried to calm him down, but he was tuning everyone out but himself. They tried some exercises to calm  his tremors, but he wasn’t budging from  his frame of mind.

Then I made the mistake or maybe a blessing in disguise. I stood up and said,I can’t take this anymore. It has got to stop, please stop. The tears, the arguing, the lack of ability to comprehend anymore what I am saying!! I just want to run and hide!!

What had I said? What had I done? I clamped my hand over my mouth, and sat back down. I had let my feelings out of their hiding place and the professionals had seen it. They had seen my frustrations and tiredness.

The nurse looked at me and said, I was wondering how long you were going to be able to pull this off. I would have been pulling my hair out a long time ago. We both so admire you for what you have been doing and for how long you have been doing it, but don’t you think it is time to actually consider placement for him, where he can get more therapy and be around other people?

Instead of waiting for my answer, Al is over on the couch screaming that I want the house for me alone, and that I don’t love him etc. This is what happens each time Al and I try to talk about maybe finding a better place for him. His guilt words being thrown at me like poison darts, always make me crawl back in my hole and keep me quiet.

Not this time, the nurse and the therapist took over the situation while I sat there in surface shock, and they started talking to him about how much happier he would be living in a home where there were nurses and staff to be with him when he fell, and the games that went on inside, and all the new friends. He began to cry, and then so did I, and then the ladies followed. Pretty quickly it turned into a pool of tears right on the carpet.

Al finally broke down and said he might be happy living in a rehab home, as the ladies called it. The therapist wrote an email to a facility here in our home town to try to get information on what had to be done in Al’s special circumstances.

By now, it has been two hours since they have left, and my heart is in my big toe. I am feeling the guilt no matter how I try to slap it away. I failed him, just like his dad did, no I didn’t, yes you did. I walked into his room just now and looked at him to see if he was alright, and instantly tried to imagine what it would be like to not have him living here, and I turned around and left.

I literally forced myself to think about how I could go back to work, and I could go pick up Al and take him to lunch, and he would actually be glad to see me and we would laugh and chat, bu then my thoughts would come instantly back to you failed him. No I didn’t.

I am not sure if I can do this, I don’t know if I can get rid of the guilt and let him go, even knowing he may be better off. Maybe this won’t work out anyways. I have tried to look into it before, and always got a no, or he is not on Medicaid, so no, but maybe it will work out………………

I need to, no, I have to keep looking straight at Al, and how many times has he fallen, and his confusion, and the EMS’s having to come pick him up off the floor, and his tears, and his sadness. I am thinking of me and not him.

Dad died, and that was it, over. I had no one asking me for permission to let it happen, it just happened without my consent. This to me is ten times worse, I am being asked.

59 thoughts on “Gut Wrenching Pain In My Heart

  1. Let go of the guilt, Terry. This may be a blessing in disguise. Al may thrive in a new environment with friends and staff so he doesn’t have to count on you 24/7. You have done a fantastic job. Get information on a placement and try it out. Worst case, you could bring him home again, but I bet it would work out. Mom fought assisted living tooth and nail, but after they were there for a month or so she wished they had done it way sooner. Change is difficult for most people, but sometimes it is good and usually necessary too. Take care of yourself while you take care of Al.

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  2. Terry, this is the turning point that had to happen. I am glad the nurse and therapist saw this. My heart breaks for you – please don’t beat yourself up – you have to do this.

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  3. The irony of your situation is that you will look back at this time and wonder that you could not “see the forest for the trees”. It happens to all of us who are primary caretakers. My best advice to you is to listen to the nurses. Put your own guilt aside for the moment and think only of what Al needs you to do. Think of placement as a temporary respite for both of you. If it doesn’t work out, you can change plans. Godspeed on this journey, Terry.

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  4. You have to let go of that guilt talk in your mind. It is faulty thinking. You love Al. You have proven that, for sure. And part of loving is letting go. Now… think carefully about this…. What are YOU getting out of having him in your home? As miserable as you often feel, you are still getting the positive reinforcement in your own head that you are being good and responsible and caring for him. BUT …what about him? Of course he would be scared to leave. Change is scary when we are healthy and whole, and his fear is compounded with his disabilities. BUT… what is truly BEST for him? It is sounding like he could really benefit by the stimulation and routine provided in a care facility. As parents we often did ‘what was best’ for our children even when they didn’t like it. Same thing here. And ……. if things really really really don’t work out, you could always make another change, right? Be gentle with yourself. 🙂

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  5. Al is seeing you as if you where your father, that’s what happens in those who were abused. it’s not you’re fault, you haven’t failed him. in fact placing him is the best gift you could give him. you’re doing what you’re father maybe didn’t, giving him what’s best for him. look at it as your gift to him no your failure.

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  6. TERRY I JUST READ THIS AND I HAD TEARS IN MY EYES FOR YOU AND AL. PLEASE PRAY TO GOD FOR GUIDANCE. YOU HAVE NOT FAILED HIM AT ALL. YOU HAVE BEEN A ROCK FOR HIM. ITS NOT A BAD IDEA TO ACCEPT THE HELP. I AM HERE FOR YOU AND I WILL KEEP YALL IN MY PRAYERS. LOVE YA MY FRIEND, LUCY

    ________________________________

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  7. I can sense your pain through your words, Terry. There is a time for everything! And from little I know about your history with Al this is the time to get some help and for once think about yourself! You’ve given whatever you could give and more. Get the help now! God bless you!

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  8. Raani, is right. You are not alone – You need someone who can sit with you and listen. That means reaching out for some help – you deserve it. Think about how helpful it was to have those nurses there with you today. That enabled you to let down and cry. No one human being’s shoulders are so broad to take on everything you’ve had to take on. I’m saying a prayer for you – that you reach out and get some comfort.

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    • i am so involved that i am forcing myself to sit on my hands and keep quiet, and let God do what he wishes, and not argue, but only hurt…….if God wants Al to be placed for his sake and mine, then I will have to listen

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    • Diane you hear me thinking? because this is what I have decided to do after much arguing with myself tonight. God is in charge, right? I am going to sit back and see what he wants to happen. It is the only relief I can find at this moment

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  9. I am just crying as I read this Terry. Praying and asking God to cover it all, to take care of all the details for Al to be placed, if that is His desire. It’s just too much for you to have to make that decision. Wish I could hug you right now. love and prayers!

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    • you have made an excellent point that not even I thought of. I am too tired, too exhausted from five years, and now I will let God make the final decision to live here with me or be placed. I can do nothing else at this time

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  10. Oh, Terry, I am so sorry you are going through such a hard time, and oh do I know the guilt you feel at having to make this decision. It’s hard, I know, because I also had to come to the realization at one point that I could no longer take care of my father-in-law. What made it harder is that I had other family members that thought I was just being terrible, and they filled the decision fill with more thoughts of guilt for me. But I’m thankful that my own doctors and his were encouraging, and made it clear that in letting those family members feel me with guilt and stressing over it was just causing my own illness to worsen from the stress of it. What it comes down to is how is all this affecting your health, and will it eventually cause you to have an emotional breakdown or worse…a stroke? You said yourself that you would be able to go take him to lunch, you could go back to work, he would have nurses around 24/7, get daily therapy, and have activities and friends to be involved with. It sounds to me like there are more pros than cons to this decision. Pray about it, and seek the comfort and peace that God will give you in it. I know that in love we hold on to those who are ill in our families, but as with my holding on to my mom when she was suffering from the ravages of cancer, sometimes we need to let them go into God’s care. You know you have my prayers.

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    • Bonita, it is so nice to read your reply. I actually decided about an hour ago, to let this go and give it to God. I am looking at it like this. If it goes through smoothly, I will know God was wanting it to happen, and if it doesn’t work out, then it is not time yet. I am just too tired to keep arguing with myself back and forth, and of course, I don’t know the answers, so I am letting it go

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  11. Oh, Terry, it is human nature to feel guilty, but please, think!!! Think of all you have done for Al with so little help. I hope that things work out so you can place Al where he can have all the help he needs. I worry about your health and emotional well being. I truly believe placement might be the answer for both of you. God bless you,

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  12. Dear Terry: I have (luckily!) so far not gone through a similar situation, although I have seen relatives and friends go through it. I’m a psychiatrist and I’ve also seen the professional side of it, and I know how difficult it can be for carers, because of guilt and because you don’t feel you can ever do enough. But you have to think of yourself and how Al would feel if he was well and could appreciate what you’re going through and how difficult it is for you (and he probably still does at times). Not that any illnesses are pleasant, but the ones that affect the ability to look after oneself and the character of the person are the most difficult on everybody.
    Yes, I agree you’ve done the right thing, because becoming unwell yourself or carrying on with what your brother feels are arguments or telling him off would have been hard on both. It is best to try and focus on the good times and in the bottom of his heart he’ll be happy if you are.
    All my love:
    Olga

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  13. My dear Terry, you did NOT fail Al. His health failed, that’s it. It is time to acknowledge that you have done your utmost to help him but you cannot give him the care he now needs. That is not a failure on your part – that is a massive success and tribute to you, that you kept him with you as long as you possibly could, and probably longer than you should have for your own sake.

    You love Al. You want what’s best for him. Make a list of pros and cons and be honest with it.

    You are both in my prayers.

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  14. Terry, in my opinion (backed by personal and professional experience) I believe the only guilt you might appropriately feel right now is for the abuse you have given yourself. I have no doubt both you and Al will be happier and healthier if you find a good placement for him.

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    • thank you Mona, I never really thought of myself as abused, but as I sit here, physical and emotional abuse are not the only abuses in the world. thank u for pointing this out. deep down inside, i really want to come back out to the person i once was

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  15. Send me a message as to what you need and why he isn’t on medicare? I have worked with the disabled for over forty years both as a teacher and in the community. I know the ins and outs of the system. I maybe able to advise you with more information. You have nothing to feel guilty about. We all reach a point in our life when we have to know when to let go.

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  16. I’m going to keep it simple… I’m so glad they …the nurses and therapist saw exactly what is happening…The “guilt” is something we bring on ourselves…You do have to keep in your mind…that what you are doing is helping Al …not done to hurt…And when he is settled …he will be happier…keep this in your mind…mkg

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