I Want, I Need


I was feeling my heart breaking a little as the nurse told me Al‘s face changed when they told him he was coming home today. Yes, he will be brought home around 5 this afternoon.

My first thoughts were sadness. He doesn’t want to see me? Don’t I do everything I can for him? Why doesn’t he want to come home?

The nurse said they spoiled him.  Well, I spoil him also. The nurse said he was feeling better. The doctor said it will be up to me how well he continues to feel at home. Based on what he is allowed to do. The only time he was out of bed was for a shower. He even ate in bed.

I guess I am going to have to face this sooner. Talking to him about his activities. Maybe he is not crazy about me. After all I am the sister. They were nurses and strangers. Someone new.

You can tell that I am struggling on accepting this. I wish they would not have told me to be quite honest. I know that I don’t spend every minute with him. If I did, the house would not be cleaned, laundry and cooking set aside. Rhino would not be fed. Dishes would pile up.

I am getting too hung up on this crap and I want to stop feeling this way. I am having a talk with myself but when he gets here it will all come flooding back.

No matter how much I love him I must have space. I can’t sit in his room every  minute he is a wake. I need to breathe. Is this wrong? He watches TV quite a bit by  himself. I don’t really care for his shows and he doesn’t want to sit much out here in the living room.

I wonder if he is going to want to go to Day Program tomorrow or wait until Tuesday after the holiday.

Now my stomach is getting all messed up. Sometimes I hate myself for being such a mushy grown-up. I have to be me while I take care of him. I want to do a good job and I want him to know that I love him.

I have two hours and he will be home.shocked_womanbook4

33 thoughts on “I Want, I Need

  1. I know it is hard Terry, but it is time you sit down with him and ask him what he wants. Tell him that what ever he wants is what you want for him. Don’t let him think that he should try to please you, and he may want to make you happy because he loves you. He may think that his going to the day program is for your benefit, not for his. It may just be a lot easier on him to stay in bed with no pressure and not as much pain. Is it really so important for him to socialize, or more important that he gets the rest he needs so that the tremors waste the rest of the time that he has?
    I know that you are trying to do the best thing for him, but you have to stop trying so hard! You have such a little time left with him, what are your priorities? Do you have to have everything done? Sit with him and talk, watch tv with him, just sit quietly and know that he is not in pain. Everything will still be there when he is gone and life is too important to waste the precious time on planning everything and not enjoying what you have.
    I have had a scare the past few days with my middle son being in renal failure and being unable to do anything but wait and see. Thank God, his kidneys started working today and he is doing better, but we never know how much time we have, or our family has. The world will wait, at least most things, remember what is really important. God bless you my friend and you are both in my prayers.

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    • I have never given what you have told me much thought until now. Maybe I am in denial that he could leave so soon. I am going to read this again and maybe again and do some soul searching. Thanks Len for helping me

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  2. I agree with the earlier comments Terry..And this isn’t about how much he loves you at all. and I hope in your heart you know that. He adores you and appreciates you. If he is feeling more comfortable than his time away was well-served. That is what you prayed for…

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  3. Maybe it’s not talk that’s needed. Maybe just to remember if you want to help someone you have to pull down and fasten your own oxygen mask first. Maybe think more about what you want to do. I wonder when you talk about talking, are you really asking Al to give you permission to live your own life even as you care for him?

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    • No I don’t ask Al for anything, not even time for a shower. I make my life all about him. I didn’t really do anything special why he was gone. I slept quite a bit and wrote. I want whatever he wants

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  4. I 100% agree with loopyloo. dishes yes, quick meals quicker, rinse of the dishes, wash when he is asleep. Laundry can pile up a little but do it when you have a minute to start a load it doesn’t have to go in the dryer the second the spin cycle stops. Fold the laundry while you sit with him. Talk if he wants to talk, and watch his shows with him, read to him or quietly to yourself, do you have a rocker in his room if not put it in there to rock as you talk , watch tv or read, the soothing sound of a rocker will ease both of you. His time is short cherish it my dear one cherish every moment~ everything else can wait. Oh and if he doesn’t mention day program don’t mention it to him, it is more important that he have peace and quite not the hustle bustle nervousness of getting ready, leaving etc. let him stay in bed and rest. My love and prayers for you both..

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  5. Terry, you do need to give yourself a little space from time to time to nourish yourself and look after your own needs. Yes, I said needs, not wants. But if you don’t look after yourself you will have nothing left eventually to give to Al. I’m sure he doesn’t expect you to spend 100% of your time physically with him. He may need a little space himself. And I do think you will have to talk to him about the day program as you need to know whether the bus should come pick him up or not. I do not envy your position, but I also know that the Lord will see you through this. I pray for His wisdom to guide you, His patience to hold you steady, His discernment to make right decisions, His peace to keep your mind and heart, His understanding to help you know Al’s needs at any given time, His knowledge to know what to do and His love to wrap you both up in His arms. May God richly bless both you and Al through his last days, weeks or months. Remember, He has your back!

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    • thank you so much Diane. Your words sunk into my heart. It is so nice to have a friend in you. You are caring and such a good woman. Thank you so much. I will continue to do the best I can with God’s help

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  6. It doesn’t sound like it has anything to do with how he feels about you, Terry — it sounds like he is glad to be feeling better and doesn’t want it to stop. After all, it’s not like THEY let him go to Day Program, and it’s not like THEY sat in his room with him every second. I, too, saw a lot of wisdom with what loopyloo said, and I wondered after you mentioned that the nurses were someone new for Al to see, if there might be people who live close-by to you who would be willing to drop in from time-to-time during the day, only for a few minutes to say hello. It wouldn’t involve a huge commitment from them, and wouldn’t tire Al out either. Just a fleeting thought, anyway.
    I hope you and Al experience a smooth homecoming for him, and that he is feeling great! Take care of yourself, Terry, and blessings to you both!

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  7. Ask him. Ask him what he wants and then try to accommodate him as much as you can. But also take time for you. And who cares if the house is a little messy? They’ll be time for that later. Do what you can, when you can. I’m praying for your both. Sandy

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    • Thanks Sandy, I know that since so many of you have stated almost word for word you all are right, The house can wait and I did ask Al and we decided to go one day at a time

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  8. I can’t speak for Al, but I know when I have had extensive physical/emotional needs, I have often responded better to the care of strangers than those closest to me. It’s sad, but I think our desire not to be a burden on our loved ones often comes across as frustration, even anger, that we are dependent on their care.

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    • You know, I think you have a point. Al said within the first few minutes he was home that he was sorry he was messing up my weekends. I told him he wasn’t at all, but I can see what you are saying

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  9. Terry, don’t take things like that personal – it’s all down to Al’s state of mind at for the moment and maybe he enjoyed where he was just when he was told and as a kid he didn’t feel for going home.
    It has nothing to do with what you have done or not doing for him. Sometimes it’s good that you can be a part, because it’s very tough on both of you … so please, don’t get upset about things like that .. if he had been forced to stay against his will .. it all had been totally different.

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    • you are right and later I thought about how my kids didn’t want to leave grandma’s house. this is the same thing. he was glad to be home, I could tell, hugs, how are you feeling by now?

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      • Terry, I have such problems to sit … so I stay away from my world here until things are getting better and soon NYC is coming up too.
        How I now will manage that 6 hour flight. *smile

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  10. you mentioned he was in bed more at the hospice and his pain was less. maybe he needs less activity that is physical. everyone’s advice seems insightful and i don’t have much to add here except take care of yourself as well as possible during this trying time.

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  11. No, they shouldn’t have told you that! Horrible. What was the purpose of them saying that to you! But…I remember when I was a kid and it was time to go home from a sleepover..I just (almost) never wanted to go! But, that didn’t mean I didn’t love and adore my parents, I was just having fun with the different pace of life/surroundings. I’m sure he loves you, and appreciates you more than you know. ((Hugs))

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    • It isn’t that I didn’t know it was tough. Physically I knew what I was getting into. What is tough is standing by watching him die. You can not prepare for something that huge. When you take care of patients you do your job, you get involved, you go home. when you care for family, it is a whole new ballgame. Hugs my friend. I admit, I am weak, I am very weak, when it comes to losing someone I love

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      • I’ve been through it, and I understand. No matter how sick they are, how long they’ve been sick, how much they want to go on to heaven, it’s always too soon. You’re right, watching someone die is hard; when it’s someone you love, it’s lifechanging.

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