Knowing Can Be Bad


::dream::

::dream:: (Photo credit: Krysthopher Woods)

For a couple of weeks worth of nights, I have not been sleeping well at all. I have the baby monitor beside me on my night stand to hear in case Al falls or needs me, so I assume my deep rest doesn’t come easily with silently listening to this. I am not sure what else prevents me from going to nice dream lands, but I do know I sleep deep enough to have dreams, but they are usually bad dreams.

I sometimes wake up out of a dream crying, other dreams, I remember vividly, as someone has died. One dream I saw shootings that almost ended in my own death. I have always heard that if there is a dream with death involved, we should be thankful that we wake up, before the actual death, maybe because if we didn’t, it would be our own death.

For the last two weeks, Al has obtained a new habit. He walks out from his bedroom to the kitchen, now hanging on to anything to keep his weak stability, and still fixes his ready-made, heat to eat breakfasts, but as soon as breakfast is over, he cries.

No one has said anything to upset him, the TV is not on, so I can not blame some tearful scene, he just cries. It is worse when the shower girl comes to bathe him, and after a week of seeing this, I let my instincts take over, and I listened to the conversations during the shower, to make sure nothing out of the normal, was being done or said, all seemed fine.

Today, is no exception, I wake up with a semi-bright attitude, make my way to the kitchen, get his medications poured into his single-size serving cup, pour me a nice, hot cup of coffee, and place my behind in the marked out shape that has been designed into the seat of my computer chair, and he is up.

Today, the shower girl came and upon her departure, she tells me that he cried all the way through his shower. She suggested that he return to his room, to help with his tears, until he can compose himself.

While she was showering him, I made a pot of home-made vegetable soup. I browned some hamburger, then added fresh cut-up chunks of yellow squash, tomatoes, some celery, onion, carrots, small pieces of potatoes, tomato sauce, onion soup mix, spices and water. After I bid her farewell, I finished my project, and then made Al some strawberry jello with pieces of marshmallows added for his dessert today, then I went in to talk to him.

He was sitting in his recliner, with his legs stretched out and I noticed that his toes on each foot are now almost completely bent under. I have seen this coming, and have been told it is the draw of the muscles, the shrinking process. It worries me because in my mind, I can picture looking at Al’s foot and not seeing any toes. This will surely cause a balance problem with walking, as our bodies rely heavily on our toes.

He smells good from his shower, and his hair is combed neatly, but he is full of tears. I ask him why, and he says it is personal. I talk to him a little about the routine he has allowed himself to get into with crying, and I suggest he may want to try to talk about it, so it can get out of his head, then he may be able to smile a little.

It took no more prompting and he yells out that he can’t do anything right, that he is afraid of doing something wrong. After much talking, I finally figure out, that he is so upset about what the Parkinson’s is taking away from him. He has come to face it head on, that he can do nothing any longer without much fight from his symptoms. Climbing in to the shower chair, big burden, holding the wash cloth over his eyes, not easy, tremors moving the cloth and not being able to cover eyes easily anymore. Getting a drink from the refrigerator, requires much bend in the knee from  just standing at the refrigerator for a moment, and deciding which drink he wants, I now see his body almost shrink  half his height, from standing.

I look back to this past week, and I now remember that his boss had to feed him his ice-cream because he could not do it. Three times I have had to take Al’s shirt off, because he can no longer raise his arms above his head, and then have the strength to tug it over his head. Twice he has put his shoes on the wrong feet. Too many times, I have had to remind him to sit up as straight as he can. Each night-time snack now requires me to have to open his snack, or get his drink ready with thicket, and sometimes help him get food into his mouth. Last night at supper he could not raise his arm high enough to get the liquid from the glass into his mouth, so I helped him.

No wonder he is crying. What I am taking as a common thing, by helping him more and more, because I realize this is all due from the Parkinson’s ripping his life away from him, Al is taking it in a personal way, as being a failure, and not being able to do anything right, and afraid of making a mistake.

It doesn’t matter how many times I tell him he does everything right, or that I am only a few steps away from helping him when he needs help, the issue comes back to he is becoming much more dependent on others.

It is no wonder, that every web page you read about Parkinson’s, you see the same print, that 75% of patients go into heavy depression. The depression causes the body to go into silence, the silence brings you to a level of non-concentration. Lack of concentration brings about more falls, and falls and lying in bed or on the couch too much, removing yourself from activities, causes fluids to fill up in your lungs, which can cause pneumonia, and this is one of the number one things that takes Parkinson’s patients, not the disease, the falls and filled up lungs.

I told Al once again, that I am so sorry that he has to endure this illness. I told him, that if I could, I would wish it out of his body and toss it in the garbage can. He never looked up at me, and so I left the room, with him sitting in it, tears falling, the lights off, and the TV on low volume. I know if I went in there right now, he would be staring out the window, trying to figure out, why him, or he would be picking his skin or scratching his head. I choose to remove myself, and come here to WordPress, and blog my feelings, because here, blogging, I know there is life out there. Someone will read this, someone will comment. It gives me a glimpse in to the world on the other side of this door.

60 thoughts on “Knowing Can Be Bad

  1. Oh Terry…this makes me sad to read about how sad Al is. I cannot imagine what it must be like to feel as though you are not able to do the things you once were able to do. There is no ‘I understand’ reply coming from me because I don’t understand. I feel blessed to be able to move freely and care for myself though, and maybe that is part of the blessing in this for you, that you might be able to appreciate more the simple things in life that you are able to do. As someone with a friend who was paralyzed somewhat recently I have seen the struggles he and his wife are going through. It’s made me realize just how fortunate I am to be able to do such simple things that I took for granted before. As for Al, keep praying for him and I will do the same. God is with him, even on days when the frustration, sadness, and anger probably make him feel otherwise. You’re doing your very best to care for him and that’s all that can be asked of any of us. Blessings for continued strength for both of you.

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    • yes, seeing others who have it worse, makes us count our blessings doesn’t it. there is always someone worse than we are……god bless and prayers for your friends Brian

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  2. Hey from the other side of the door. I wish I could hug you right now <3<3<3 I doubt I know how hard this is for you, but I'm here. Take care of yourself and remember God is always there <3<3<3

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  3. Terry, I feel the sadness and loneliness you feel coming out so strongly in this post. I am so sorry for you and for Al. I can’t possibly know how hard and painful this is for both of you. What a dear lady you are to care for Al. Even though he is feeling so terrible now and can’t express it, he must appreciate you so much. Have faith in God. He knows you and hears your every prayer, even the prayers of your heart that you can’t find words to express. You and Al are in my prayers. “And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.” Rev. 21:4.”… and let us run with patience the race that is set before us. Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God. For consider him that endured such contradiction of sinners against himself, lest ye be wearied and faint in your minds.” Hebrews 12:1-3. The only way I know to find read comfort to offer you is through God’s words. Blessing to you and prayers…Heather

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    • God is the only one who can calm this illness and take away his pain. i admit i don’t understand why god is allowing my brother to continue on with his grief and pain, but i have to accept when the time is right he will take him home, healing him. i do appreciate your prayers. between u friends and prayers, this is all i have left at the moment. god bless

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  4. I know how heartbreaking this is for you and Al both especially since you have no control over it. My prayers go out for both of you daily and I wish I could do more to help you through this. But being 1200 miles away, I can’t just walk next door and offer you a hug and a shoulder to cry on.
    Just knowing when the time is right, God will take him home where he will have no pain or tremors is comforting and then maybe things will get a little easier. We do serve an awesome God, but only in His time.

    Walk daily with God at your side!

    † Ed

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    • i keep wondering Ed, why God is waiting. someone with mentality issues doesn’t understand, and certainly i don’t either. i just want Al healed, and if this means calling him home, then so be it. peace enter, pain leaveth

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  5. while nothing i can say can ease your pain or that of Al’s I did have an idea about his toes. It might help it might not but hell sometimes anything is worth a go….I was wondering if it might be worth seeing if you know the foam dividers you place between your toes when you paint toe nails would help with slowing down the muscle shrinkage. if he could bear to wear them just for a couple of hours a day round the house when he is watching tv it may help stretch the muscles and stop them turning under as much it is just an idea not sure if it would help much or not

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    • since you had an idea about the toes, am i right? that they are shrinking up also from the Parkinsons? i do have a set of those toe separaters, and i will ask him if he is willing to try them………..thanks for another great idea Paula. you are super!!

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      • it could be that or it simply could be the muscles contracting from not being used as much also when you have any sort of trouble with the spinal area the nerves do effect the toes I have one that twitches and goes into mad spasms the kids think its gross and freaky to watch thats kids for you lol does Al have any sort of physio? is it available through your doctor under insurance? If you think of the body like a car engine they less you run it the more it seizes up

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      • we had al in physical therapy for a few weeks, but the techs came to me and said with his mentality and lack of comprehension and the tremors, no exercise would help, so they dismissed him. they gave him hand exercises to bring home and a big rubber band for his legs. he worked with those until all energy has now drained and he can not do them anymore. it just looks like the toes are completely bent under. i would think this has to be painful. it reminds me how the japaneese women of the old country bind their toes to make them smaller. they had all kinds of tricks they used to accomplish this. if you have never seen or heard of it, google it, it is very fascinating, their cultures

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  6. I’m glad you came here. It’s good that you do have a place to come. There will be limits to what can do for him, and I’m truly sorry for both of your pain. Nobody will have a solution for everything. If they did there would be a cure. You are remarkable Terry. Please know this. You are Al’s guardian angel. Hopefully everybody here at WordPress can give you the support you need. Hugs and prayers, as always!

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    • there are several who are here for me regularly, you included. i think i am just in numb land anymore. i know nothing can be done, but i still have to deal with it, you can not chase it away, but i can leave the room and pretend better days. thank u for caring my friend

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  7. Terry, I pray for you both everyday. I know it is difficult and you wonder where God is; and many times in life we simply don’t understand. I don’t understand a lot of things lately. You are a true hero and Al knows this even as he deals the best he can with life right now. I keep praying God will just show up at your house in a big way. Hang in there.

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  8. Oh my dear I have a good friend in his 50’s going through the same thing with Parkinson’s. He has always looked after himself, involved in sports, ate right..and now he grieves as does his wife. I can only send thoughts of love.

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    • i don’t hate in life, but watching my brother slip away from me and his own life, the feelings of wanting to live and now wanting to die, i have learned to hate the word Parkinson’s. Add this on top of his other medical issues, heart attack, mentally challenged, and a father who never accepted that my brother was different, causing my brother to have low self-esteem, it is quite a mess here. the only help i receive, are you friends and God. this is how we live, one day at a time

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      • That’s about the most we can do Terry. I have a friend who has been through some tough times and she always says, ‘You know what? You play with the cards God dealt you and you do it the best you can! She is such a source of inspiration to me!

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  9. I just breaks my heart to read about what you and Al are going through. All I can say is just know we are here and our hearts and prayers are with you. God bless you.

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  10. Terry, having to have someone bathe him has got to add to the lack of true manhood and independence that Parkinson’s is bringing on him. That is why he cries before she gets there, and after she leaves. He knows that he is being stripped of more independence daily and the coming shower reminds him of that. Daily his mind is saying I can do it (walking to the fridge without aide), yet his body is reminding him that he can’t any longer. I know his struggle, because it is mine also but from a different illness. But I think the emotion of lost of independence is much harder for men then women, because we are use to having some form of dependence on our husbands and fathers, where men are raised to be the one others lean on, who are to be the supporters not the ones being supported. All you can do is find ways that he can still hold onto some of his independence…like the seatbelt for his scooter. Look for those ways that you can offer him some of his manhood back and you will see him get through a little better….hmmm maybe a riding lawnmower attachment for his scooter. Then he can mow the grass for you. I know…I was just being lighthearted but still trying to make a point.

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    • i understand, but today has been rough.my mentality is down and thinking is difficult. i get what you are saying even with the lightheartedness of the lawn mower, but i can think of no ideas. can u help me think?

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      • The easiest way to come up with ideas is to question yourself when you are doing something…Is this something Al could help me with? Make Al think that you need his help as much as he needs you. For instance, I have terrible vision because I have terrigiams (blood vessel tumors) on both of my eyes. I can’t get them fixed until they completely cover my cornea and I’m blind. Now I can sew like crazy, but when I was working on things, I would ask my father-in-law if he could thread needles for me because I couldn’t see well enough even with my tri-focals. I would ask him if he could watch me trim the bushes and let me know where I missed or how to shape them better. It made him feel like I respected his opinion and that I needed him. I can see with my glasses except when my eyes get tired or dry, but I knew that by using this I could give my father-in-law a feeling of being useful and needed. Maybe Al could help you in this way, by being your extra eyes. If he can pick out pictures for a framing or decoupage project, even the smallest task can make him feel that he is still needed, and can be of use to others. Maybe get him involved in helping as your taste tester when making cookies, or making decisions on gifts for Christmas. These are things that he can do by looking at catalogues, ads, magazines, and he can help you wrap things by being that extra hand when you are tieing a knot, or by picking out bows, wrap, and such. Just remember to always say…Now how would I have ever done this without your help?!

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  11. All carers, such as yourself, need respite. It is a most difficult thing to do; to look after a frail other. Apart from having WordPress to help relieve the stress do/can you engage in activities that ‘take you away’, or is it necessary for you to remain at home? I have a friend who enjoys dancing. This activity bolsters her up and gives her some ‘time out’ so that she is more able to contend with her husband’s failing health. Sometimes we can be so caught up with the ‘other’ that we can overlook our own needs… My sympathies go out to you and all others bearing such a heavy load.

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    • i have a regular caregiver who showers Al, and i have hired a few ladies who are to give respite care so i can get out, but of all the scheduled events i have planned, each one has been cancelled due to a phone call saying they were ill or something came up. i love photography, and consider myself an ameteur photographer and this is one thing i would love to get out by myself and do

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  12. Hi Terry, Al is enduring what the Parkinson’s is doing and you are enduring Al’s response to the same thing….But it is not likely to get any better and so somehow you must almost brace yourself..knowing that it will happen over and over again and distract yourself like you have done by blogging or something else. It seems Al cannot get used to it even knowing he can’t do anything about it. So crying it will likely be as that is his outlet. Keep as strong as you can, and make sure you get some time for yourself….Diane

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      • It’s like they’re looking for an ‘easy’ job and maybe Al is not as easy as they like…I’ll pray specifically for that particular issue…you need it…Diane

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      • thank you, i appreciate it. i agree, sitting with Al is not a glamor job, and it could b boring, you do have to spend your attention on him and not on the TV, but at least he can use the bathroom, and feed himself, so there are no diaper changes and feeding needed

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  13. Oh, my heart is breaking for Al and his struggle and for you. My uncle also went into heavy depression with Parkinson’s. I can’t imagine the struggle and pain they face realizing their lack of control and knowing their destiny. I’m so sorry, Terry! You are always in my thoughts.

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    • it seems that after many trials of antidepressants, nothing can match his depression, so the doctors have him on nothing today for it. thank u for caring. it makes me feel better

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  14. The strain of Al’s constant crying on you must be immense – unbearable even. If my Anthony cried like that I don’t think I could cope. I don’t know how you do it Terry – you deserve a medal Juliexxx

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  15. This post surely gives us a true picture of what you are having to deal with…and I know as long as you can…you will continue to do it…Love keeps us motivated and hopefully friends and doctors can keep You…with the strength and knowledge you need to make decisions that seem to be coming in pretty fast…God Bless Terry…~mkg

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    • i grab my motivation from anywhere i can find it. WordPress friends are the first place i look to. I don’t know where i would be with out all of you. i may have given up long ago

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