There Are Changes, And No Changes


licking salt off the plate at the thai curry i...

licking salt off the plate at the thai curry in a hurry restaurant – _MG_8072 (Photo credit: sean dreilinger)

How do I do it? Get over myself? Get used to this is the way it is, and there is nothing I can do about it. It is not his fault, it is not my fault, it is the disease’s fault. I tell myself that I am being stupid, that people aren’t really looking at him, but I know they are, I have seen it many times. It bothers me very little when we are at home, because I realize that he can’t help it nor fix it, but when out in public, I want to sit somewhere else. I have to change myself, and quit thinking on me. Parkinson’s has helped my brother, Al, to stick his nose to the plate when eating. I have questioned Al here at home as to why he does this, and he tells me so he doesn’t drop his food, or miss his mouth. I understood immediately, so why aren’t I understanding out in open view? Is it my upbringing of good table manners? I sometimes think it is. My mom was very strict about table manners. No swinging of feet under the table while eating. Sit up straight, raise the fork and spoon to the mouth. Don’t lean-to the silver ware,lift, lift, lift. I have even been poked with my mom’s fork, for having my elbows on the table before. It used to make me mad when she did this, but I learned quickly in order not to get poked again. You can not leave the table until your plate is emptied. If I didn’t care for a food she served that day, I could just sit there until I did learn to like it and eat it. Don’t get up from the table until you ask permission. May I be excused please? Today, if I was placed at a table, where you had many pieces of silver ware, I would know which to use first, but I eat at my computer table, while Al eats at the kitchen table, because it is uncomfortable to be stared at the entire meal, plus the silence kills me. Al watches me like a hawk looking for prey. It is instilled in him from the unkind remarks our dad used to make to him. Dad never said a kind word to Al, he always cut him down. Al didn’t do anything wrong, it was his mentally challenged brain that dad would not learn to accept, therefore taking it out on Al constantly. Now that I am his caregiver, he has just transferred all his feelings of dad over to me. I used to ask Al to quit staring, and stop being so quiet. It didn’t work. He would get angry with me, because I was putting him on the defense again, and I got so nervous, that I would get up from the table and not eat supper. The solution was, separate us. Now, I have less table manners than before. I remember them, I just don’t use them. My elbows are on the table, and no one is poking them.  He watches the news, and I listen to the news, and eat, and try to read blog stories. It doesn’t feel very friendly, but it works. I also don’t like watching the news any longer. Not for the reason, that you think, that the news sucks, or that all is negative and bad things, but because Al doesn’t understand a lot of things. He picks up what the newscaster is saying, but he doesn’t go deep enough in his mind, to analyze the reasons behind what is being said. An example is yesterday evening, the weather man was telling the weather. When he commented that the next three days were going to be exceptionally warm for spring, with very little rain, my brother got pretty upset. He was talking not to the weatherman, but to the weather itself. He told the weather that it knew better. That it knew that it was supposed to be not so hot for spring, and then he answered the weather sitting on the opposite chair, as if the weather could talk and there was a two-way conversation, although it was only Al. He told the weather, that it knew better and that it would be sorry, and then he said, I thought you would see it my way, you bad thing! Al does this two-party conversation alone all the time with the complete news. I have asked Al if he would like me to change the TV, or maybe we could just turn it off during meal times, but he said no. He explained to me that he always watches the news during his meals, and that I should know this by now. We don’t change Al’s routines, unless it is a dire emergency. He gets very confused and can become quite agitated over the slightest changes. I am the one who has made all of the changes in our lives. I do not get out and walk any longer. I no longer sleep in because he could get up before me. I can no longer pick up and go to anyplace in the afternoons, because he has to nap between three thirty and five thirty daily. I have to change his bedding each Thursday whether I feel like it or not. His room and bathroom has to be cleaned and swept on Fridays, because this is the way he has always done it. Suppers have to be served at six because this is when he has always eaten, so sometimes I don’t even eat my own until seven or seven-thirty, because I am not hungry. We may eat a late lunch, and he is not hungry either at six, but he has to eat. After his birthday party, there was left over ice-cream, so Al started having a dish of it at bed time. Now I have to make sure there is ice-cream here each night, because he has formed a new routine. So I am always going around here checking my mental list of what day is it, are the right foods  here, planning my activities according to what I am serving for dinner. I never lived like this before. I was much calmer, a happy-go-lucky gal, that played my free time from work as I saw fit. Now, I am trying to figure out how to get myself to accept and be calmer about his nose in the plate out in public. Although, I do understand, I still get embarrassed. What can I do?

51 thoughts on “There Are Changes, And No Changes

  1. Being a caregiver can be a lonely and difficult job. It’s natural, I think, to be embarrassed when somebody sitting next to us is doing something socially uncomfortable. I can remember even feeling that way when my kids acted up in a restaurant, or someone had too much to drink. It’s a good thing you’re doing, but I’m sure it’s not an easy one.

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  2. I have a bowl of ice cream every evening too in bed – had since I moved back to Sweden and not working anymore. Love it – I watch all TV from my big and dreamy Ikea bed – it started about a 18 months ago when my right foot start to swollen to double the size – and that takes the pressure off it. … it’s my bed, my life and my ice cream. Love it.
    Like you picture … I can lick my plate still … when nobody sees me. You have a massive job or your hand and you a fantastic job, but it must be so tiring – you have some strength in you, girl

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      • Can’t licking the bowl … can’t manage that …. yet. It has to be a plate and with some good sauce on. *smile

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      • i thought about that after i posted the comment, how difficult it would be to lick a bowl without getting it all over our hair and chin. a plate is a much better thing to use. lol

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  3. The answer lies in the same direction as you were saying a short time ago. You need more time to yourself…so it is not 24/7 of Al’s routine and wants. The two day respite is too expensive…Have you checked with the Parkinson Society to see if they have any suggestions as to how you might receive some help in caring for your brother and possibly still have time for your own needs?…Just a thought…..Diane

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    • there is a chapter of Parkinsons an hour away. i can call them on Tuesday. Thank you for this new idea!!! i am going to come through the screen and give you a big hug if they have a plan for me!!

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      • yeah i guess it is a tough one…i’m just asking because i don’t know…can you say “i need you to take Al for a week, i am going away.” even if your aren’t, they don’t need to know that or any of the details?

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      • i have asked one of them to take him for an hour and it is no. my other one, middle one can not because he is ill himself with panic attacks, and the oldest one lives out of state. i wish they could though, and it is alright to ask Buck. i am an open book and always open to suggestions. i like it that you care enough to ask. so any other ideas, please tell me

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      • okay glad i didn’t offend you! how about not giving the one that says no a choice? if they know they have a choice from you, they will say no…just a thought…

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  4. Loved Diane’s thought o the Parkinson’s society… Who would better Know!…I have learned to accept my son’s disabilty to some degree…Usually all of the time!…I hold my head up high and treat Him like he’s doing everything right…and those who look ….can look the other way…or wonder all they want…He is special to me…and that is all that matters!

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  5. Hunny, I have to say two things: first, at least you are seeing your selfishness in the matter and that’s a start; second, the way your dad treated Al had two affects on you – being sympathetic to his condition on his behalf and programming certain attitudes into you not on his behalf. Recognizing it for what it is and beginning the change there is the fist step, which you are doing. The second step, as I see it for you, is to get your mother hen instincts involved as to where you are his “protector” and not his “detactor”. Do you see what I mean? You know this is all said with the utmost love and concern for you both!! xoxoxo

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  6. It is very difficult, and often lonely being a Caregiver. I agree with Diane about the Parkinson’s Society, also what about a church group, or even a volunteer program? Most Hospitals (at least in my area), have a list of volunteers who might come in and sit with Al, even if it is during his nap time, so you would be able to go for a walk, or at least a couple of hours of you time.
    I understand about the restaurant thing, I took Momma on an outing to Red Lobster, and at that time, she would take 2 hours to eat, the waitress was getting a little snippy, because her table wasn’t turning fast enough. I had originally planned to leave a rather large tip, but when she politely asked if we wanted the rest of Momma’s meal wrapped up to go, that got shot down. Unfortunatly for us, Momma can no longer swallow, and has a feeding tube directly into her stomach.
    I also agree that who cares what peole think,

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    • i understand everything you are saying, but how do i get past it? the restaurant thing. Al thinks nothing of it, doesn’t even notice. it is me who has the problem. i am ashamed of myself over this

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      • There is no reason to be ashamed of yourself, sometimes (this is just a theory), the way we were raised (as in table mannners), goes very deep within us, and while it may not bother you at home, It bother’s you when other people notice. Try and look at the problem, and try to figure out just exactly why you feel this way. Is it embarrassment?, it is knowing you don’t have the power to change it? For me, I started to see things differently when I finally realzed, I had no power over this thing called Parkinson’s, my job was to make sure Momma wasn’t embarrassed. I hope this makes sense.

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      • it is the embarrassment. i need to realize he can not help it, like you did, and so it is. nothing i can do about it. thanks for your help

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      • Terry, you have a lot of good advice here, and the only thing I would venture to add is that it is unlikely strangers in public aren’t going to understand instantly that Al is sick. That being said, let Al eat his food in peace any way he wants to. His table manners are nothing at all something you should feel ashamed of. Do you get overly stressed by being noticed by strangers? It seems to me that you do. My own two cents is that you put on your “In Your Face, Strangers” bold look and stare down anyone who thinks of looking in you and Al’s direction with anything other than empathy or compassion. People sitting at other tables need to mind their own business and pay attention to their own plates. And you and Al don’t need to meet anyone else’s expectations… especially a bunch of strangers in a restaurant. You are doing very well, and I hope you gain more and more self-confidence as time goes by!! I love you, Terry!!!

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  7. Terry, try not to be to hard on yourself. One of my favorite sayings lately “It is, what it is”. Just remember you are not alone in this journey, if I were closer I would give ya a hug.

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  8. Well i say F*ck em! Sorry for swearing but you know they are secretly jealous they really want to feel free enough to grab their plate at the end and lick it aswell. The same way if we are all honest we long to throw ourselves on the floor like a toddler and kick and scream. Like you I can do the whole silver service dining but I do the elbows on the table at home aswell. When we take my toddler out my other half gets far more stressed over what people think than I do and I have to say the more stressed he gets the worse the toddler behaves Al has an excuse for his poor table manners but I bet you next time you are out take a few glances round the room your mum would have quite a few people to poke forks at. And a bet anything quite a few do what I consider to be the rudest thing ever and have their phones switched on taking and answering calls while out with other people (I only make exceptions to this for people with babies just getting used to leaving them or people with a real reason for needing to answer)

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  9. You are burned out, Terry, and you need a break even if it is just when Al is taking his afternoon nap. Can’t one of your children come in for a couple hours at nap time just to be there and let you have a breather?
    I remember when it was me they were looking at and one of my family who was with me. I think I was just as embarrassed as they were, but I was told to just ignore them and continue on. I will have to tell you my story someday – it is not pretty, but I was in real bad shape.
    I love you my friend and I hope you have a better weekend.

    Ed

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  10. Terry, most of us have a thing about people staring at us. It is good that Al doesn’t notice, but you do and it is embarrassing. Perhaps if you look around you will find not as many people as you think are watching. And if they are, look directly at them and give them a big smile. That should have some effect.

    You eat at the computer, and I eat on my couch either reading or watching a movie. I was taught manners, but at home, who cares? My mother used to have her face nearly in her plate too, because she was so short for restaurant booths. At home she would sometimes fall asleep in the middle of dinner and her face would be in danger of landing in the middle of her food. I can remember picking up a salad for each of us from a fast food restaurant because I didn’t have time to prepare dinner. I timed her and she took about two and a half hours to eat the salad. She was also one to do things on a certain day and have meals at a certain time whether or not she was hungry. Fortunately for me she adapted well to my non-scheduled days and simply ate whenever I prepared dinner. She was able to get her own breakfast and lunch when I left something for her.

    I will pray that the Parkinson’s Society will be able to help you or point you in the right direction to get some relief if only occasionally. And, in the meantime, try to take another nature walk! And take some more pictures.

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  11. Even though this is a rather sad post, there are hilarious aspects to it too because you write so vividly. I can relate to the meal thing as my husband can no longer eat and swallow normally so it’s always very messy and we cannot go out for meals at all anymore because, yes, it is embarrassing. And the other reason I hesitate to take him anywhere public is the toilet accidents – argh. You are doing well – why don’t you retaliate a bit to Al and let him know how you feel when he is nasty to you?

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    • It’s such a double-dilemma isn’t it – ie. how honest to be in blogposts and how honest to be with the person being cared for.
      One of the things I have had to do lately is to deliberately harden my heart in order to be pragmatic and in order to preserve my sanity. So, for eg. on the phone with Anthony a moment ago, he said, “I thought you were coming in for lunch” and I said no and that I wouldn’t be there until tomorrow now because Mandy was there anyway and other visitors were coming.
      Sorry, this probably doesn’t help but maybe it’s time you got harder on Al rather than yourself (hope I haven’t overstepped!)

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  12. Love you, angel Terry, and just your pure heart and honesty. I find it hard to be out in public at times, just by myself! haha! We all can get looks even when we are trying to behave properly. People don’t know what to think about my daughter and I. I never know what she is going to say and have to have a sense of humor about it all! Had an idea about going out to eat, if possible. Does Al have certain places he likes to sit at? Or could you guys get a more out of the way table or booth? And I thought about if you could sit with your back to most of the people, so you couldn’t see them staring , that might help you too. 🙂 Just thinking!
    love and prayers!

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    • that is a good idea. Al just picks the first seat, closest to the door, which allows all to see us. i am going to try to move back. i have been a big fool. all the comments have let me know i am too this or that. i have stayed off the internet for the rest of the day. i need to be tougher i guess, and i m too much of a softie. i always get envious of how people can stand up and say what they want no matter who they hurt. i could never do this. i take better care of Al than I do my own spirit.

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  13. Terry, I can tell you why it has fallen on you…because you care. When my mom had surgery for colon cancer the doctor decided one of us had to learn to take care of her, and in case of a blizzard draw blood and giver her the chemo treatments. Now there are 9 of us siblings and I’m the youngest girl, the 7th child, so you would have thought I would be the last choice. Add to this that the tumor on my mom’s colon ruptured, and blew off one kidney and spread cancerous infection throughout her gut, so after surgery someone had to drain the infection each day and put on a new dressing, also deal with a bedpan until my mom could get up again. Well, we all sat in the waiting room trying to decide who was going to be responsible. Each of my siblings came up with an excuse and so did my dad. Baseball, live to far away, have to work (so did I), have to take care of my kids (funny I had a daughter too, who was just 3), going to college (so was I), can’t stand needles (neither did I), I’m a boy and mom’s a girl, and so on came the excuses from everyone. Finally the doctor came out to us and asked who was stepping up to do this, no one spoke and I couldn’t believe the selfishness in my family, so I said I will. After all mom had done for all of us and no one could see past themselves to do it. Well I went in, and the doctor showed me how to deal with the infection, the bedpan, and then decided to show me how to draw blood. The minute that the needle pierced the skin I was out cold. The doctor and his nurse got me in a wheelchair and rolled me out to the waiting room, where he told the family…”She’s not the one.” Still no one stepped forward, not even my brother who had been a medic in the military. The doctor looked disgusted with the family, and asked me to come back into the room with my mom. He said I know you can’t stand the needles and blood but I need to work out something to help your mom during inclement weather. He asked if I drove, and I said yes, then he came up with the local satellite hospital which was only a few miles from us, even closer than the hospital or the doctor’s office. He told me if I could do the infection and deal with my mom’s daily care including bathing her and the bed pan, then he would arrange for me to take her to the satellite hospital to deal with the blood tests and chemo. It was now done and decided. The reason you are the one dealing with Al is the same reason I was the one who cared for my mom…we love them enough to care for them and put ourselves aside to make their lives are better and they are cared for. It is because you have a heart that is filled with compassion. Yes, we have to put ourselves in the backseat and them in the front, but I guarentee that you will be glad you did. It gave me special time with my mom that my siblings did not have. She knew about my weaknesses where needles and blood were concerned and that I was far from wanting to be a nurse, and so my mom saw the sacrifice that I was making to care for her. But I would have done it again and again for the time that she and I had to grow even closer as mother and daughter. I have memories that no one else in the family have. I have stories that she told about growing up that no one else has in the family. Someday you will have the same…stories about your times with Al that no one else has, and you will treasure them fondly. Then one day you will see Al whole in Heaven and you will know just what your sacrifice meant to him and to the Lord.

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    • how do i describe what your words have done to me. i feel for the first time someone, someone, actually understands. to me, being a professional caregiver for over twenty years, taking care of stranger patients is nothing compared to taking care of family. it isn’t just the words we tell, it is the unspoken feelings and heart breaks watching our loved ones leave us slowly. it is the understanding that you know you are going to do this alone, with no ones’ help. i thank you so much for sharing with me. you have comforted me in no way another person has. thank you so much For. bless her Lord, for she is good. Amen

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      • I’m glad that God can comfort you with the same comfort he has given me when I needed it. There is a purpose to all we go through, and the Bible tells us that it is so we can give strength and comfort to those who are going through the same things we have already been through. I’m always here…when the internet isn’t down…lol. But I’m here, and it is funny that the Lord draws me to those who need comfort, help, and understanding more and more. I count you and others like Sara, Bird, Anne and more as sisters in Christ who God will use to help each other along this final journey towards the day we will all meet in Heaven, where we will all rejoice that God knew what we needed to finish the journey.

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      • Terry, the Lord tells us in His Word that He never gives us more than we can handle. He sees deep inside you and knows you can handle this – with His strength and His help. He will never leave you to do this on your own but is there with you 24/7 because He loves you so much and He believes in you. He has given you the heart to love and care.

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  14. I think you’re already doing an incredible job as it is, and no one else can tell you how to do it better, because really, you know your situation best, and have been amazing. Great boundaries for dinner time otherwise it would be a meal of angst each time. Just because you are his caregiver, doesn’t mean you don’t give some care to yourself too. So keep it up, otherwise, one can end up drained, cranky, and resentful. Which, many of us are only a regular basis just taking care of ourselves. 😀 Keep up the good watchful eye of the daisies that can be found in each moment, because truly, you are a bouquet in of itself. 😀

    Pink.

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    • thank you Pink. i am way too sensitive, and I wish i could get tougher. some think i am gaining ground there. i try not to go on pity parties for myself, instead blogging here to release the pressures. i do my best and God guides me each step. i do get tired, too tired and i know i need a break. i am going to call the Parkinsons’ foundation tomorrow and see if i can get any help at all

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