I have never spoke so open as I am going to on this blog. All hell has broken loose here at home. The cake that I made? A big waste of time.
Al refuses to change his thinking with things he can no longer do. I have told him so many times, that I can not even remember, that when he gets something out of the refrigerator to drink, he now has to use both hands. He refuses. He doesn’t want to admit he has Parkinson’s. He also refuses my help to get the drinks for him.
Well, tonight at supper, which I am now not eating, and he is snotting and tearing in his plate, spilled the pitcher of lemonade. Why? Because he only used one hand. The hand is so weak, and the tremors are so bad, he can hardly do it with two, but at least he can accomplish pouring his own drink.
I let Al do this, because it is the last thing that he can still handle with meal preparation. I do not want to have to take it away from him until I am forced to.
He got in his tear mode instantly. There is no talking to him. He isn’t listening to me. All I am hearing is he is a failure, he is dumb, he can’t do anything right. He asked me to get a gun and shoot him, shoot him dead.
My head exploded, my neck is hurting along with my shoulders. I had to leave the kitchen and sit at my computer chair where I can see him. He is telling me he wants the words stupid, retarded, and dumbass on his tombstone.
I have tried to talk to him, to deter his thinking to somewhere else. He started hitting himself when I continued to try to talk, so I walked away, before I, myself have a stroke.
I am sorry, I have lost my trane of thought. He could not eat the chicken thigh that I had prepared in the crock pot for him. I had to take the chicken and his potato and put it in the blender and puree it.
He is still crying. The things he says disturb me. I have no idea on what anyone could possible want to teach me by forcing me to listen to someone who is talking so negatively about his life and death. There is nothing to be learned from this.
I am learning that I am wasting my time to some point. Making him a pretty cake should now be tossed in the trash in my eyes. The hopes that I had of what it could do for him, are gone. I can not keep trying, I feel. Not because I don’t want to, but it does not work.
I am not saying that I don’t understand his frustrations with Parkinson’s, because I do, but I can not deal with his bad talk about wanting to die. I want to scream at him. If you want to die, then die! I am tired of trying to save your life. I am tired of trying to make smiles happen for you.
What do you think I sound like? A mad woman who has flipped out? Someone who does no longer care. I care, this is the problem, I care.
I look up at the ceiling of our home, as he is now telling me that I want him gone, I want him dead. I want to live here by myself, and while he is going on , I am pleading, no begging God to stop this. Lord, I don’t want to be tested anymore. Lord, I love you, what else do you want from me? I don’t know if I am strong enough to even do what you could possibly still want. I take care of Al. I go out of my way to keep him as peaceful as I can Lord, but he is not co-operating, because he doesn’t want to live.
I can not even cry, but it is alright. Al is crying enough for the two of us. I wish I had someone to come here and watch him for a while. I need to be by myself.
I only wrote this to help myself. I am selfish right now. If I don’t tell someone, I am going to crack up.
He has stopped eating, and he doesn’t even want my cake. I quit. He left his supper set.
He wants to die, and I want him to live.
Who I am 
I’m so sorry things didn’t go the way you expected tonight. I wish I could hug your right now. You’re both so tired and frustrated and there’s nothing I can physically do. I’ve whispered a prayer and I hope you two can find some peace in this storm tonight.
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thank you my friend. i just want to pull your words off the screen and hug them so tight to me. i need someone who acts like they care, but i do have u and the blogger friends. i don’t know what i would do without you
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I’m glad I could be here to help in some way. I hope you both feel better in the morning. Just pray and try to let go for tonight.
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i will, i am going to hide in my room
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You have been through this so many times…and as all things …this will pass…there’s another day tomorrow that will probably be better…enjoy your cake that you worked so hard on then…or with someone who will enjoy it…Sometimes a little tough love has to be shown…We all act as children sometimes…and we also just have to throw up our hands sometime and wonder Why Me??? and When will this end??? Only human…Doesn’t make you crazy or bad …Just have to let off a little steam as they say…Hang in there girl…Better days are ahead…Only thing is …we don’t know the time or date…Love to ya! ~mkg
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thank you Marilyn. my mind is so gone right now i don’t even want to see him, and this makes me feel much guilt, it is almost like if i see him i will explode
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You don’t want to hear but I’m going to say it anyway. Perhaps you aren’t meant to continue on the way it is. Perhaps you are doing what you think is right and good and it is and is self-sacrificing. But perhaps God does not want this for you or for Al. Perhaps being somewhere, where he is around others such as himself will make him feel less shame at being how he is. Perhaps things are not changing because they won’t as long as you go on the way you are. There may be many who disagree with me, We cared for my mother as long as we could humanly keep up with her needs and our family’s and our own needs. Nobody likes the word ‘nursing home’ but they are in existence for a reason. When the time came for us it was the hardest thing we ever had to do…but we had to. We as her family went to see her as often as we could and she was glad to see us and our visits were good, until she lost the ability to recognize us and communicate with us. But of course we continued to go and watch t.v. with her, brush her hair, take her for a walk in the garden. Until she could no longer get out of be we could take her home for supper for an outing…but in between she remained in the care of others. We checked on her care regularly and if there was something of concern we brought it to their attention.That is the thing that families must be faithful in doing. When possible if we were visiting we made an effort to do during a meal time so we could assist her because there was a shortage of staff to always help everyone. When they can eat themselves they should do so…only when she couldn’t anymore we did. All this is for you to pray about and see if a peace comes to you. In no way do I say your should do this or do that. It is up to you and God. Your family should not have any real saying in this as they do not care for Al, so don’t worry about what ‘others’ think. Do only what you think is right for you and Al. You cannot control the situation any more I believe…..Just my thoughts….Diane
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i appreciate your thoughts ,,i really do, i just feel a wreck right now and can not think. i will read your words with more care tomorrow. i hope u understand, please understand
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Of course I understand your confusion right now and that you are very tired….Diane
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i am now back and i think that Al is having a pity party at my expense. he is using me to get pity. he spilled the drink, he knew he had done wrong by not using both hands, and yet he is the one that has made me feel awful, like i did something wrong. i also think that you are right in your last comment. i can only do so much, and if he is going to talk about death and hit himself, then he needs more help than i can give him
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Terry, I’m going to be blunt. He is having a pity party, and you need to call him on it. You need to tell him as long as he feels that way he is giving into the disease. He will only get worse by giving in. He has to fight it just as I have to fight my illnesses. He knows you have a compassionate heart and you love him, and he is playing you because of that. Stand up to him and tell him…enough! I think Diane has a point. You need to give it to God in prayer and let him lead you in what is best for Al and for yourself. You also need to let Al know that if he is going to give in and not try to fight then maybe he would be better off in a nursing home. Tell him how it makes you feel. He’s going to cry, and be angry, but after he does, maybe it will open his eyes to the truth, that unless he fights the illness, it will win sooner than either of you expect. It isn’t the first time he has used tears to control you, and probably won’t be the last time he tries to. There are times when you need to be compassionate, and there are times like a mom of a child you have to be tough with your love and say Enough! You know that as a mom. I’m saying this out of love and understanding for both of you. I was often sick as a child, and went through a whole lot of abuse from my dad, and a couple of brothers. There were times it would get so bad I would just cry, get angry and want to die to get out of all of it. My mom would listen and wise as she was would realize when my sadness or anger was valid and when it was self pity. She would usually catch me when I was having a pit party and say…”Stop right there! You know what your grandmother would say…You can get happy in the same clothes you can get sad in.” Sometimes she would replace sad with mad, depending on my mood. Then she would walk out and leave me to think. I always knew she was really telling me to stop having a pity party. Now when I catch myself feeling pity for myself I hear my mother saying it once again to me and that is all it takes for me to stop. It’s okay for Al to get frustrated with what he can’t do, but it isn’t okay for him to have a pity party at your expense. He needs to know that you won’t allow him to have that pity party either and that it is unacceptable. You have my prayers, because I know that it is frustrating, and disheartening to hear him talk about wanting to die in the way he is.
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after having some time to think about it and coming back to the computer, i think that Al is playing me too for pity. i am not even sure if i can handle taking care of him much longer. he may need more help than what i can give him. he uses these tears to get to me and he is going to make me sick, physically, this has to stop, and i am going to have a mother son talk with him tonight! thank you for being bold and talking to me
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I’m glad you are, because otherwise he is going to keep it up. I didn’t want to overstep my bounds, but I hate seeing it happen to others. I have a sister-in-law who uses this same tactic to try to control my husband and their other brother, to get whatever she wants. It has really caused stress in the family, to the point that they don’t even like to stay at her house when they have to go to family functions. It has overshadowed both of their parents funerals, and ruined holidays gatherings. Unfortunately I have a daughter who does this too, and none of her sisters want her around anymore because of the stress it causes. That daughter won’t come here because I won’t put up with her pity party, so not finding the sympathy she wants she avoids our home. Instead of facing the consequences of her choices, she blames everyone in the family for her making them. The problem with pity parties is they often are hardest on the people on the other end of them instead of the one throwing them. I hope things get better for you, because that stress can hurt your health more than you will ever know.
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if you didn’t love me enough to speak out i would not be able to now see things in a different shade. i needed you to be honest with me. please don’t quit, sometimes saying pretty things doesn’t cut it…….i respect your opinions For.
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I do care, but I am one who won’t usually say it unless I see it happening. It was your words that resounded with the struggle you were going through. They were powerful with emotion, and that allowed me to see it through them. I am just one who can’t stand to see someone hurt or put through the wringer because of another. What I told you was for Al’s good as well.
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i totally understand, and i still appreciate your honesty, although we don’t know each other, i have a feeling that you are a good christian person whom i can trust
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I try to be both. I believe in the Golden Rule and try to live by it.
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me too
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Terry,
I can only speak from experience here. I have learned, in my life, when there is utter chaos all around and everything seems totally hopeless, a huge breakthrough is just around the corner. When it gets like that I am persistent in talking to God and in staying under the shadow of His wings. Continue trusting God to fix it; ESPECIALLY when you can’t see His hand in the situation. It just means that He is working it out behind the scenes. I have prayed for you both just now! God Bless you.
Sheldon.
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thank you so much. i feel like i am drained, and need tons of prayers. maybe there is too much pulling here between brother and sister. he wants to die and i want him to live. would i want to live if i had to live like he does? it is very hard, so i want to thank u for the prayer
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Anytime Terry. Believe God for peace for you and your brother despite the challenges. Blessings!
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thank you for being here for me
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Okay I am going to share something now and I understand that my case was different I could be ‘fixed’ but I hope in sharing you will understand a little more about possibly how Al is feeling and it may give you a little comfort to know his rants are really neither aimed at you or your god (as you know I am pagan and at the time I pretty much gave up on my goddess aswell) almost 4 years ago to the day I went into one of the darkest periods of my existance I went from an happy new mum with a beautiful bouncing boy to a complete cripple within months. at first I thought the back ache was normal i had just had a baby but I was concerned about the numb patch in my leg. the pain increased daily by my 6 week check up I could not lay down for the docs exam it turned out i had slipped three discs in my back. My whole life was turned upside down had it not been for the people around me who took no end of abuse I would not be here now. I had a baby I could not care for infact I could not be left alone with as I could not pick him up by myself I was trapped upstairs in my own home for months as I could not manage the stairs except by crawling up and down then to attempt to get to medical appointments. There are so many things we take for granted that until we lose the ability we do not appreciate. When they are taken away from us the depression kicks in. i will be honest really when the pain is bad you no longer care about the possiblity of the next world whatever your faith you are in a living hell and thoughts of wanting out are the norm its not that you want to leave those you love you just dont want the pain anymore. and believe me you never stop loving the people around you but you start to believe you are a burden and then guilt twists into the depression that you are ruining their lives so you get angry at them and try to drive them away. you take more and more meds to try to ease the pain but they only cloud your judgement further and the idea of escaping the pain consumes you. I have never told anyone this but the 29th of november 2008 at 2.49am found me on my bathroom floor and I made a decision I had an appointment with the consultant in a couple of days and I had decided if he could offer me nothing new I had had enough I wasnt going to do it anymore. luckily for me and my family he had me in surgery within a week of seeing me if he hadn’t I am pretty certain I would not be here now. Four years later I still remember the feelings of being a waste of space, as i write this my body physically cringes at the rememberance of the pain, I still have bad days and need more surgery but compared to then it is nothing. Please try to remember that it is not really you that all his anger and frustration is aimed at it is the disease that taking away all the things that we consider as making us human. I remember screaming at my other half that if I was an animal someone would have taken pity on me and put me out of my misery, if I was a horse they would have shot me. I don’t think until you have experienced the pain and the desperation losing your ability to function as a human being anyone really understands what iit really means. Anyway I have taken up enough of your time but i hope it helps you a little in knowing that whatever he says he still loves you and things like the cake and the smiles you create for him do matter
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thank you so much Paula. this is the hardest thing i have ever done in my life. so many feelings and frustrations coming from both side. i am so glad you shared your comment with me. it helps me understand better his side. he knows that he is getting worse. he sees that he is weak, but i can not fix this for him and this is frustrating for me. thank you thank you so much for sharing with me tonight
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there will be days where nothing you can do or say is right you just have to believe me when i say that although you take the abuse it is only because that you are there and we alway lash out at the ones who least deserve it and we love them most (and yes it is probably because we know you will forgive us)
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this is so true, i m the closest one to him every day, reminds me of a marriage/ u have taught me a lot
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thank you Paula, and after reading your reply a couple of times, it makes so much sense to me, thank you for leaving me this special comment
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Terry, you have already gotten some very good advice here, and I hope you are feeling stronger by the time you read this. I’m sorry for your struggles. Prayers and hugs for you!
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thank you All. I am more calm now but not any more trusting. I am going to go to my room and watch TV there. thank you for being here for me
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Terry i think you may be making it your personal responsibility to make him happy and you can’t. that is his responsibility. you can’t change that for him. since you take it on yourself to make him happy, you feel like a failure when it doesn’t happen. it’s not your burden to carry. you are not a failure. he is just not happy period. i hope this helps in some way. i’ve been there in other situations and i know how you feel, but it is such a relief to let it go.
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you are right, i feel like it is my responsibility to make him happy, to make up for what our dad did and didn’t do for him, but i can not, and he is proving this to me more and more
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you’ll feel so free when you stop trying!
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i have to. it must be the prayers from all of you bloggers plus my own, but i feel renewed tonite, ready to fight for what is right for me. i love him but i have to start thinking of me. i hope this doesn’t sound selfish, because i don’t mean for it to
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it is not selfish at all, that selfish message is a lie from you know where! go for it and get ready for some freedom! maybe even for both of you!
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I’m with you during your trials.
I had to feed Dave for several years, but when he didn’t want to eat what I offered him anymore, I had to let him do what he wanted to do–pass on.
You’ve done lots to make Al’s life comfy, and let that be a comfort to you.
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i need to quit thinking i can keep going. the truth is that i can not do it all, no matter how hard i try
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My heart breaks for you and Al. As always my thoughts and prayers are with you two. What a terrible, dreadful disease that is! I think you are very courageous to open up to us on this blog. I believe that the hand of God has in some way steered some very wonderful folks toward following your blog so that they may be able help you with this awful burden you carry by lending their encouragements and prayers. I don’t know how you have stayed the course in this battle and not given up. But I’m sure that God is very pleased with your determination and devotion, even though his heart must be breaking also, watching you and your brother endure the torture of Parkinsons. I am not a very religious person. But I believe in my heart that God is good and full of love and compassion for you and Al and wants to give you comfort and relief. And that is my hope and prayer for you both tonight. Take care and God Bless.
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bless your heart for this wonderful reply. i do appreciate the prayer. it is even worse to me than any cancer, because usually with a bad cancer there is an ending. with Parkinson’s the patient can live for years. i only make it through God any all of my blogger friends. they probably don’t realize how heavily i lean on them…..thank you Someone!
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Terry, being relatively new to your blog I don’t feel I can give you any real advice with dealing with Al. What I will say is that this blog post is raw and real and I hope you draw some solace and comfort from the writing and from the comments you receive. The most important thing to remember is to look after yourself too, both emotionally and physically. And if blogging about it and a community of bloggers can help you in that then so much the better.
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thank you so much curtain. it does help so much when i have the support of my blogger friends, and this includes you also. i have no family members left so it is him and i. thank you for being a part of my friends
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Terry, don’t really know what to say. Nothing wrong in wanting him to live – but I think you should just let him do what he want to do … know so little about his illness, but it’s a roller coaster all the time for you both. You can’t take his happiness on – that’s up to him. He have shown so many times that he can have happy days and it’s his decision. You care and you love …. and you have to live with what comes along. It’s so heartbreaking to read about your “bad” days.
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what i have learned through the comments is that i need to stop babying him, and treating him like he is severely mentally challenged. he is choosing, as you said, to have good or bad days, not i, but i am being sucked in to his crap, and choosing this. i have to stop. last night i had a mother and son, instead of a sister brother talk with him. i laid it out for him. i told him tears, in your room, whining, in your room, negativity, in your room. i told him he upsets me and is causing my body stress that could hurt me. i told him i was finished being his sounding board unless he was in real pain or needed help, that he had to accept his illness, and if he wanted to die, to tell God about it. that i could do nothing to help, because i don’t help kill people
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Love and hugs and prayers, dear angel Terry. I deal with a little of this, at times . .. the negative talk and the hurting themselves. I wish you could just step out and away when it starts, but like me, you can’t leave him alone. Terry, do you have any headphones? Thinking when you know it’s at the point when he is not going to be consoled or can listen to you, maybe for your own well being and health, you could listen to some music with headphones, that would keep his words from getting to you. Just a little idea. thinking of you and praying too. It’s just so hard sometimes.
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Deb, i did what you suggested but instead, used his room as my headphones. i told him whenever he was crying for no reason, being negative or talking of death, he was to go to his room. i explained how he drug me down by his pity attitude. i had to change and become a little tougher to save myself
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May you find some peace tonight and dream beautiful dreams. 🙂
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i had a mother son instead of a sister brother talk with him last nite. i feel renewed now because i set some rules, not him
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It is good that you have set some boundaries for you both. Your situation is very challenging, and you need to feel respected as much or if not more than Al. Have a beautiful day. 🙂
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thank you so much Big!!! i have felt like the boundries had been taken away from me, and i needed to get them back!!
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Oh, Terry. You give so much – both to your brother and everyone’s life you’re touching here on WP. Sometimes being strong is not to keep butting one’s head against the wall, but to declare defeat. No, I’m not saying you should “give up” on your brother, but to keep fighting something that might be a losing battle doesn’t serve any of you. “Giving up” to me, isn’t a sign of weakness, but to accept one’s limitations. “Giving up” takes perhaps more courage than continuing a futile battle.
I know this isn’t the same, but I found great peace in stopping the internal fight I had with my alters. The moment I stopped seeing them as my enemy was when I found the first hint of peace.
You are tired, Terry, and understandably so. It must feel like drowning a little every single day – and I do know what that feels like. You want so much for your brother. You want for him to be happy and at peace. But then you aren’t able to, and you feel guilty for that. You give and you keep giving until you are completely depleted, and then you feel guilty for feeling empty.
You get angry at your brother’s behavior, which is a perfectly normal human reaction, but then you feel guilty for that as well. And the guilt certainly does not help on your energy level.
I’ve been wanting to say this for a while now, Terry, but I’ve been hesitant in doing so because I’ve been afraid of offending you and afraid of butting in where my advice isn’t asked for, nor my opinions. But the thing is – I hate to see you like this. I hate to see you so tired and sad. You aren’t a trained health professional (or at least not to my knowledge), but you are an expert on your brother – and this is where I think the conflict lies. A person with training and expertise in the area of treating your brother’s condition(s) might be better equipped to handle emotional situations. A person who has no personal ties to someone is less likely to be emotionally exhausted in the same way a family member will be. But as I said, you want good things for your brother and you love him, so it feels impossible to “give up”. And you probably worry if Al will get the care and compassion he needs from someone else – someone who doesn’t love him like you do.
As I wrote in one of my posts, and it might make me sound like a cold bitch – two people drowning is worse than one. If continuing to take care of Al will break you, Terry, it might be time to release yourself from the responsibility you have taken on. But then again, after having written all this (me and you), your post might just have been the good vent you needed, and what will fuel you to keep going. As you’ve told me, sometimes it’s necessary to get it all out there. All the anger, frustrations, pain, disappointment, the crap – just let it hang for a while, purge, and it will lessen the load and free up enough space to carry on. If that’s the case and even if it’s not – do not, and I repeat, do not feel guilty for venting. I think venting is a human right and should be included in the constitution.
Hugs and love, Sara
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Sara, i always want the truth from you. you understand so well. you are right, the guilt is eating me up, and the lack of success in healing him. last nite i had a real talk with him, i told him how his actions make me feel and how he can help to make me sick. i told him unless he was in real pain, all his complaining, whining and death had to b done in his own room, that i won’t hear it any longer. i am also considering placing him, as he is getting weaker i will not be able to help him. thank you for speaking to me, i so appreciate it. love and hugs to you Sara
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At first blush, it looks to me, that Satan is having a party at your expense. You are doing what you can, but remember you can’t do it all, Al has to do his part and try to accept he has medical problems he can’t control. He can’t just give in and feel sorry for himself or pity himself.
I pray things are better for you today, and God has pushed Satan out of the house.
Walk daily with God at your side!
Ed
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why is it Ed when I tell Satan to leave he doesn’t stay gone long?
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It is because he has found what he thinks is a soft spot, your wanting your brother not to suffer, and he will attack it continuously because you usually give in. The fact that you now realize Al is using you as a sounding wall and have told him to go to his room because you don’t want to hear it anymore may just be the thing you need to throw satan out of the house. As long as you stay strong and stand your ground, satan loses.
Be strong Terry!
Ed
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i will keep trying
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There is an answer, probably one you don’t want to hear, but which will lead to blessings in the end. My thought? Have you taken a flight lately? They always tell you to attach your own oxygen mask before helping someone else. Are you getting enough oxygen? (See, I couldn’t help coming out of blog retirement to respond to this.)
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you know how much it means to have seen a comment from you dear Mona. a flight sounds wonderful!!! I am actually interviewing a very nice sounding lady this Wednesday for respite care for Al and me. i am so praying she is the one. I will get a half or whole day a week, but i want more and more. lol. i would love to be able to travel the two hours to see my girlfriend or drive the six hours to see my daughter…………what a vacation this would be for me, and even Al!!!! great idea, my friend!!! Miss you but so glad to have heard from you…………..
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One of the greatest challenges for caregivers is caregiving, as in personal support workers find it so very difficult for those who are not related to them, that being a relative to someone you care for adds another layer of complexity and intimacy, thus deep personal hurt when they lash out. I’m so glad that you are venting this out as everything you’ve written is totally legitimate.
Your self-care is #1, as at the distress centre, we see what happens when you deteriorate. It’s not pretty, and then you end up needing a caregiver. Hence, you must put the oxygen mask on yourself first, before you give your breaths away to someone else. Too often, we lose objectivity and want to be all things to all people, thus leaving ourselves exhausted, resentful, and depleted. Short-term is one thing, but in the long-term, there is suffering and irreparable damage to you.
It may help to look at alternative options, and to applaud yourself for having endure this for so long. The thing is that for as long as you keep doing what you’ve always done, you may end up getting what you’ve always got. At some point, you really do need to make not only the best choice for you, but for him as well. Whatever that looks like, I support you.
Hugs to you and prayers to you during your time of need.
Pink.
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as in my latest blog, i can see the end coming, i totally understand what you are saying because i am feeling it and i want to live………..i don’t want to die yet…..
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Admitting, honestly, how things are, is one of the bravest things you can do. Too often, our visions of what we wanted get in the way of how reality looks. But that’s how dreamers are, we love to see the great possibilities, often at a cost to ourself. Writing allows us to put the pieces together, objectively. May you always know how incredible you are, without needing to be or do anything to demonstrate this. 😀
Pink.
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that is such a nice compliment you have given me. i never see myself for anything but a sister, mom, and a caregiver. i think i like knowing there is more to me than what i see. thank you Pink
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Sorry to hear you had such a tough day, Terry. After reading a comment about the pity party it immediately made me think of a situation I’ve encountered in my life…and that commenter was spot-on. Whether he means to or not, he’s taking the ‘woe is me’ mentality and if you’re not careful, that can be contagious. Not saying you are doing that at all – in fact, you’re displaying incredible amounts of courage, love, and strength in caring for Al. I am so frequently inspired by you. What I am saying is that you may have to take steps (whatever that might be – could be emotionally, physically, through actions or through a mentality) to distance yourself from his emotions and comments. Even the strongest human being can still be brought down by negativity or difficult situations, or whatever it might be. Continue to seek God and spend time in prayer. Only you know how much you can or are willing to take. Do everything in love…and love others as you love yourself. You’ll notice in that verse of the Bible it doesn’t say before yourself, it says as yourself. So, love yourself and take care of yourself in whatever way you have to do. I’ll keep praying for you. Remember, God loves you enough to send his son to die for you. So, no matter what is going on right now, he loves you and is with you and will never leave you. Be blessed, my friend. Have a good day today!
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thank you Brian. The negativity doesn’t seem to make me negative, but it does sadden and makes me slightly depressed. I have told him as of last night, that unless he is in true pain, he has to shed his tears, and whine and be negative in his room, that i don’t want to see or hear it because it is making me sick. This has made no difference so far, so I am trying hard to tune him out. I so do not want to have to place him. I am fighting it every step, asking God to keep me strong, but in the back of my mind, I see it coming, placement. it makes me so sad
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Wow! What an evening of events and feeling pouring out! Caregiving is never an easy job especially when it is someone we love so deeply. One thing you need to be mindful is that the Al you once knew is being taken over by the disease, Parkinson’s. It sounds like he is every bit frustrated with this disease as you are and it is coming out as it did last night at dinner.
There are times when we care for a loved one as long as we can and then the time comes when we have to turned to someone else and/or somewhere else for help. We have to come to the realization that their needs are greater than we can care for physically, mentally and emotionally. And, it sounds like you are to that breaking point. Maybe, you need to find a place where he can be placed to be cared for by people who have a deeper understanding of this horrible disease and can give him the care he needs. By doing this, the both of you would be freed from frustration and can begin capturing moments to remember once again.
In the meantime, pour yourself out to God. Spend quiet time and allow Him to fill you with what you need. He is there walking beside you at this very moment. He has not abandoned you nor your brother.
Next time your brother gets upset like he did last night, instead of walking away (which is tough not to do) but take him by the hand. Let him know he is loved and his Creator loves him so much. Pray with him right then and there. Affirm to him that he is God’s son, God’s prince and that God is there in that moment.
Here is a book I highly recommend to you to
Care Giving A Way of Life It is set up to be used as a course but you don’t have to take the course to gain help and insight from it. I am including a link for you to check it out. :http://www.stephenministries.org/coursesandmore/default.cfm/747
Also, you may check into your area for a Stephen Minister for yourself. A Stephen Minister is someone who meets with you once a week to listen to you unconditionally, to encourage you, and pray with you. It is a ministry of confidentiality. In other words, what you share with them is not disclosed to anyone without your permission. It is a ministry of experiencing Christ’s compassion.
Go to Stephen Ministries,org and there will be a phone number you can call. Call that number and ask if there is a Stephen Minister in your area that you can be put in touch with. This is a volunteer service through churches that are Stephen Ministry congregations. These Stephen Ministers also have gone through hours of training before being commissioned to help and they have a group that they are accountable to once a week. Again, I encourage you to check into this service for yourself to have someone to talk to in person about what you are dealing with and going through.
In the meantime, prayers are being sent up for you and this situation. Hugs and smiles sent your way. Please remember God is right there walking with you and He loves you so much.
Blessings
April
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thank you April. It breaks my heart and also makes me feel a bit of a failure that I can picture him going to a nursing home, and that I am almost to the point I can no longer handle him. I hate it! I am a professional caregiver for over 20 years and this is the best I can be? I have never heard of the Stephen Ministries, but will look them up with your link. Thank you April. I was very touched by your comment
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Sometimes Caregiving up close and personal is harder than any other Caregiving a person can do. What you have to do is realize you are and have been doing the best of your abilities. You are not a failure and I know God smiles down on you for the efforts and things that you have done for your brother.
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i have always tried my best in life. i tried with this also, but i am starting to give up
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hang on…most of all hang on to your faith…”God Will Make A Way.”
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i am so trying………..
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i have to agree, caregiving is so hard for family. i took care of my dad for one year while he fought leukemia. seven days after i buried my father, Al had his heart attack. i never even got the time to mourn the man i worshiped, my daddy. i miss him so much
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Terry,
I know the toll this whole thing has taken on you. I have known you personally for 36 years. Alvin is not the first person you have taken care of in your lifetime. You have cared for many people who have not given back much. Some not at all. I think there is some blessing in what Alvin gives back to you….it is just that it is hard to see when there is not much of a break from the bad. You are a wonderful sister to Alvin. His needs have come before your own for a long time. It really may be that you can’t take care of him anymore. That doesn’t make you a failure. You would still be the wonderful sister you are if you had to visit Alvin in a nursing home. I like what Mona said above about the flight and oxygen mask. You have to take care of yourself before you can help someone else and it is not selfish. You agonize over even small decisions in your lives because of how things will affect Alvin…as well you should. You are not selfish. You are just tired. Exhausted. God knows that……i have told you many times that you are a survivor….and you are because of your strong faith. I KNOW this about you and I love you….
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thank you Lezlie. you are right, i am tired, and today has been just as bad along with family members. i just want to run into someone’s arms and be comforted like i always wanted to b as a child, but it isn’t going to happen and i have to even get tougher with myself and quit dreaming and wishing. this is the way life is and i can never change some things. thanks for commenting my friend
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Terry, as others have said, you are not a failure. Never think of yourself as one. We all fail at times and will continue to do so, but that never makes us a failure. You cannot live Al’s life for him much as you would like to. And you truly do need to have some “me” time even if it’s just a long relaxing bubble bath with some soft music playing, perhaps some worship choruses. I wish I lived nearby. I would come and give you a good deep-muscle neck and shoulder massage. That could go a long way to relieving some of the physical stress and possibly some of the emotional stress as well. If you can, it might be good to watch a comedy movie. Laughter can release healing in you, too. I realize you can’t leave Al, but if you could close yourself in your room for a time with a good book or movie, anything to take you out of your present circumstances even momentarily. I’m still praying and will pray for wisdom for you to know exactly the right time to find a nursing home for Al. I hate the thought of nursing homes myself, but if you get sick you will then be forced to place him somewhere and you may not even be well enough to visit him. Seek the Lord for the right time. He is faithful as we trust in Him. God bless you and Al. I pray you will both have a peaceful, restful and refreshing night’s sleep and wake in the morning with renewed courage, purpose and vigor.
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when i am in my own bedroom i know that i am not really a failure, but when i am around Al i feel a total failure, and he helps me to think this way by his words. i am praying for a fresh new day tomorrow, and i want to thank u for your prayers for us. you are so dear to me
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I’m so sorry, Terry! I’m behind on reading posts, but I hope today was much better for both of you. Hugs to you.
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it was and it wasn’t. i want one perfect day!!!!! let it be tomorrow!!!
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