Just Another Day

Today I picked up the nebulizer and solution. Since I have been through all of this with Daddy, I passed on the “training” on how to use the machine. Hopefully this will only be a temporary thing, for now at least. I don’t want to become dependent on it.

The living room curtains were stored in a closet so I dug those out and hung them again. At least now I can’t see the broken slats on the blinds. A trip to “Wally World” to pick up some inexpensive panels for the patio door and now I have a bit more privacy. Why was this so important to me? I have been sleeping in the recliner — which is in the living room, of course — for a few weeks now. Everything was just to “open” to the outside. The rooms are darker now and I kind of like it!

I only sleep for a couple of hours then awake for several before I sleep again. The whole deal is so frustrating but I refuse to “drug” myself every night so I can sleep — I don’t want it to stop working and keep having to increase dosages! I will deal with it for as long as I can stand it. But, tonight may just be one of the nights I give in.

Going to the drug store and “Wally World” then hanging curtains doesn’t sound like much to most folks, but it was all I could do today. My muscles are hurting as well as a few joints and my breathing is not as good as it could be. Over the last year, I have had “spells” where I feel like someone is tightly squeezing my chest and arms. The pain level is off the pain scale! Whenever those happen, it wipes me out for a few days and it happens at least once a week.

Dear Lord, I thank You for this day and all I was able to accomplish today. I thank You for Your love, forgiveness, grace, mercy, and Your favor. I deserve NONE of those things but I am so thankful that I have You in my life. I couldn’t make it through this crazy world without You. Please forgive my sins; watch over my family and friends. Keep Your hands on us, Lord. We all have different needs and I ask that You provide for those needs. Amen.

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Seeing Life Through Another’s Eyes

A tragedy happened in the area today. An infant was left in a car for about 3 hours before she was discovered by the mother; the child died. My heart hurts for this woman. The child is in the hands of Jesus but the mother could be in the hands of Satan.  Someone said, “I bet she didn’t forget her cell phone.”  Maybe she didn’t; maybe she did. I know I have forgotten mine before. I have a friend who has had to come back to my house for her phone about 3 times recently. This lady is going to need mental and spiritual help

My grand mother lost her first born son when he was hit by a school bus just after beginning first grade and right in front of their house. Then, she lost her last born daughter when she fell out of her highchair onto the kitchen floor. From what I was told, she nearly lost her mind… My mother was keeping my son one day (he was around a year old at the time). She had been ironing clothes; she left the room for just a minute and he was burned by an electrical shortage when he tried to unplug the cord from the wall – he was turning blue and not breathing when she came back into the room — This lady needs our prayers, not our condemnation… Accidents happen… just sayin

Several years ago, I was diagnosed with COPD. It’s not something I openly discussed. Probably because I really don’t want to hear the “smoking” speech from everyone. Mama worked around dry cleaning for many years; Daddy worked with asbestos most of his life; I worked around printing chemicals for 30 years… I don’t believe “smoking” caused all of this. At least, not alone!

I spent most of the afternoon rearranging furniture and hanging sheets and towels on the open windows — this will have to do until I can afford curtains to close out people being able to look in. With everything going on in the world right now, I can’t seem to get enough privacy. If I didn’t have to go outside these walls for necessities, I wouldn’t!

This evening was spent making my life more accessible. Then I stood back and realized I was doing the very same things Daddy used to do…. things I never understood until now, I found myself folding paper towels the way he did for when he needed them for coughing, eating, and such. I found myself arranging tables and lighting the way he did. My whole world seems to be wrapped up in about a 4’x5′ area…. well, excluding the distance to the bathroom and kitchen.

I see myself living Daddy’s life. I don’t want to do this. Guess it is a little late to stop the inevitable.

I was 12 years old when I started smoking. Yes, I know!  That was just the way people lived then.  However, I do NOT believe that cigarettes are the “root of all evil” … It may be a common denominator but it is not the only one!

Everyone of us is destined for an ending to our lives. I want to believe that we all leave our mark on the ones around us. I also want to believe my son’s wife will change her heart towards me or at least be an adult and tell me what I did wrong! Then, why my son didn’t stand up for me… Why couldn’t he be a “man” and finally “fess-up” to him lying to me and and giving me bad direction. He was my son! I did NOT see him trying to take me down. I know I made mistakes in my life. I’m sure he has done the same … or will!

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Holidays

It’s been a while since caregiver1995 has posted anything. Daddy has been gone 8 months now but it still seems like yesterday. Heck, I still wait for him to call my name in the wee hours of the morning (and often still hear him calling for me). I still think of him when I do my daily chores. I guess I will always think of him everytime I do the laundry, make coffee or breakfast, and especially when I roll cigarettes (since that is all he wanted from me in the end). As bad as things were in the months and days before God took him home, I still miss him so very much and would gladly take back even the bad days just to have him here now. My life is so empty without him. How do you let go of someone after 15 years of being their life-line within just a few months?!

I used to love the holidays and have some really special memories of Thanksgiving, Christmas, and New Year‘s under this roof. Now, there is a lot of emptiness and solitude. I wonder if anyone knows just how alone I feel this year? Probably not and they probably don’t even care; maybe they don’t notice just how hard this holiday season is for me. They all have their own families… Daddy just held us all together under a familiar roof after Mom went home. I just feel unneeded now. I didn’t think I would have a hard time with this since I know how much he suffered in the end… I am happy he is with Jesus and Mom with no more pain and he is happy beyond all comprehension… I am just selfish, I guess.

The smell of Thanksgiving Dinner cooking; putting up the tree as soon as we finish dinner; all the lights, the stockings…  A different time I guess. It’s my 55th year and for the first time in my life, I will be alone for my birthday, Christmas, and New Year’s. I never thought I would be in this place, but I am. I just never saw this coming… kind of the way I never saw me losing my job but then, everything happens for a reason. I believe that with all my heart. The Lord knew what was going to happen in my life, I didn’t.

This will be the first time in 16 years I won’t be cooking Thanksgiving Dinner (my choice, but thinking it may have been a bad decision on my part… then again, it almost killed me to do it last year so I am sure I couldn’t do it alone this year). My sister-in-law will be cooking this meal for the first time this year. She is afraid it won’t turn out just right but I know it will. (I spent 3 months compiling a book of Mama K’s recipes and notes for a Christmas gift last year!) It will be just fine; I know it will but I will be there to help her through it just in case.

My son’s wife hates me and never wants to be in the same room with me ever again  (for reasons I may never know), so I won’t be seeing my precious grand-babies and son once again since his work schedule won’t allow it, and… I simply can’t stand the thought of waking up Christmas morning alone for the first time in my life. Can I cry now? … I think I will whether anyone thinks it’s appropriate or not. I tried so hard all of my life to be a “giving” person… I gave my home out to family, friends, and unknown (my daughter-in-law sees that as “drama”) … Some times I wonder why I bothered but I know those who received the blessing of a roof over their heads when they had none, appreciated what I gave. I gave from my heart, not my head. I know each one of them appreciated what I did (except maybe her) and I KNOW God saw each gift come from my heart with no reward expected. I guess she just “expected” me to provide a roof over her head whenever she made a mistake and had no place to go; and, I did. Maybe that was my mistake. “You hurt the ones you love the most” so I have always heard… I have to believe she is saying that right now but is to proud to admit she was wrong. I want to say “this door” won’t be open again, but my heart says it will if they need it.

My heart is hurting…

Dear Lord, I know there are others out there who are hurting way more than me. They have lost children, spouses, brothers, sisters, husbands, and wives or they are sick and need a miracle… Please put Your loving, healing, comforting arms around them; hold them all close. Please heal them, Lord. Could You please hold me too, Lord. I know You hold both of my parents in Your precious arms but I just feel so alone. I miss them so much. Please hold me. You are all I have. I can’t go on without You. Please speak to my daughter-in-law’s heart. Let her know how much this is tearing me apart… not knowing what I have done and never knowing or being able to ask for her forgiveness is just more than my heart can bare … You can tell her she has won, if that is what she is looking for. I give up. I just want ALL my babies here with me. I need them so much, especially this year.

Thank You for loving me even though I do NOT deserve Your love. Thank You for forgiving me of my sins, even though I don’t deserve that either. Thank You for the roof over my head, the air I breathe, a comfortable bed to sleep in, water when I need it… for each and EVERY blessing in my life, Lord. Thank You! In Jesus’ name I pray, Amen.

 

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COPD Diagnosis and Denial

To my Family: Please understand, these words are to try to help someone who has received the diagnosis of COPD. They are NOT meant to down-grade any one of you in any way. I am thankful I had enough sense to ask for your help when I needed it! Thank you for being there when I needed you! I couldn’t have made it without you!

I feel the need to explain what happens with the diagnosis of COPD because there are so many people out there who feel they can handle it easily and it is not big deal. You are so wrong! It will drain every ounce of life and energy from you.

If you or someone you love is diagnosed with COPD, please do not ignore the diagnosis and think it will just ‘go away’. It won’t! It may take 20 years, 10 years, or even only a year before the symptoms become horribly worse. (Daddy received the diagnosis about 10 years ago, I think, but probably had it for 5 years or more before the actual diagnosis. It really wouldn’t have mattered if he had stopped smoking at the time of diagnosis because the irreversible damage had already been done. It can’t be completely blamed on the cigarettes either… he was in direct contact with asbestos every day of his working years.)

It starts with ‘shortness of breath’ and an inhaler for rescue. Then you move up to breathing treatments once or twice a day and eventually four or more times a day. Next comes oxygen along with the breathing treatments and massive amounts of pain and comfort meds. The body becomes weaker as it struggles to breathe. (The lungs need a lot of protein to function.) Food is no longer desirable since it takes so much energy for the lungs to function and the energy it takes to chew just one bite of food is no longer worth the trouble. 

This disease has no cure and will only get worse with time! Please do not think it won’t because it has no where else to go but down. It is NOT reversible and it will NOT just go away! I can not stress that enough!

If you are a child of a parent with COPD, be prepared to see your parent as a child. That is what they become. You will begin to see them as a two-year old in their “terrible two’s”. They can’t help it. It just happens. Be prepared to be a parent to your parent! It’s tough! I can’t tell you just how difficult that is. To be a parent to a parent is probably the worst thing you will ever experience. At least with a two-year old you can discipline them… How do you discipline your parent?! (Never did figure that one out!) Except “NO” seemed to work, most of the time.

I suggest you make sure you have enough money tucked away to pay someone to be a full-time caregiver (unless you don’t have a job to get up for every day because you will certainly lose your job…you will be there 24/7). If you must put them in a nursing home and they have not made provisions for Long Term Care, the nursing home will get every penny and possession they own and it will NOT be returned, ever! Everything they have worked for all of their lives will then belong to the nursing home. Make sure you have cleared their names of any real estate, cars, bank accounts, or any personal possessions. (I think the Statute of Limitations is 7 years… someone please correct me if I am wrong.) All I am saying is, “Don’t put this off!” When it is all said and done, the state (or nursing home) can and WILL take it from you. (Thank heavens I had enough sense to clear Daddy’s name from any property deeds and personal possessions when my Mom passed away 15 years ago.) Even if you plan to take on the task of caregiver yourself, you seriously need to remove their names from any possessions! It is only for everyone’s best interest!

If you are as blessed as I was to be home with my Daddy 24/7 the last three years, you must understand that you will no longer have a life. It won’t matter if you are sick for a day or more, or have your own personal problems. Your freedom to just walk outside is gone. You will have to wait until someone can relieve you because they can’t be left alone any longer. They are dangerous to their own self, not to mention the house and everything in their lives. They have lost their ability to think on a rational level even though they think everything is fine and they are still in control, they are NOT(They become disoriented and confused for lack of oxygen.) The COPD patient will consume your life. You will be what sustains their life for however long that is. Are you really prepared for that? You need to think about it! It is a very difficult road.

The last six months of Daddy’s life was under the care of Hospice. When he became confused on a daily basis, I knew it was time to switch from Home Health to “end-of-life services”. I thought I was making a mistake but I look back now and realize it was the best thing I could have done for him, and me! Please don’t put off that decision! All you have to do is talk to the doctor for an order. Hospice will not only take care of the patient, but the caregiver(s).

Trust me, you may think you can take care of them and it’s no big deal, but it will be one of the most difficult things you will ever do in your life! Don’t just assume all the family will just pitch in to help. They won’t! You will have to ask because as long as you handle it, everyone feels it is all under control.

When I began asking my family for help, they were there, but I was still the only one there 24/7. — I couldn’t have made it through the last few months without my sister-in-law, especially! — But, there weren’t any offers to stay the weekend so I could get away from the nightmare I was going through for even a couple of days. (I didn’t ask. I just hoped someone would offer, I guess.) I was the one who had to listen to him struggle to breathe at night or call for help in the middle of the night… I haven’t had a vacation since 2010 when I went away for the weekend in October and had been several years until then.

I am begging you, please understand how difficult and painful this disease will become; not just for the patient but for everyone, especially “the” caregiver. Even though I am so thankful I could be there for him, it put a strain on my life and health. If you have health problems yourself, please think about your own abilities. As much as you want to be there for them because they were there for you, think about what it is going to do to your own body. You will never completely understand what I am trying to tell you until you go through it yourself.

My Mother had cancer (never sick a day in her life until then). My Daddy had cancer four times! Neither was as bad as COPD! Please, please, please do not ignore the diagnosis! It will not go away unless they are fortunate enough for God to call them home some other time and way before it gets so bad.

Dear Lord, thank You for today and everything in it. Lord, please let my words help someone to understand what they will face and how they need to prepare for this horrible disease; and they can not do it without You! I know I couldn’t have made it without You by my side every step of the way and I know that is why I lost my job when I did. Thank You for being there with me! Please open the next door for me and let me have Your sight to see it open when You do. In Jesus’ name, I pray. Amen. 

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Holding On

Bought a slice of ham the other day to have with breakfast. Made Red-Eye Gravy and realized, he wasn’t here to enjoy it. He loved Red-Eye Gravy and biscuits with mustard on top. (If you haven’t tried it, don’t knock it! …Good stuff!) The gravy is still in the refrigerator. Just like the T-Bone steak is still in the freezer that I was going to cook for Mom the night she died (15 years ago). I just can’t seem to throw it out. I have tried so many times over the years. I just can’t do it. Why, for heavens sake?! …Wonder how long that Red-Eye Gravy will stay in the refrigerator? I guess when mold starts growing I will throw it out? Nah, I think I might put it in the freezer before that happens. What is wrong with me? Why do I have to hold on to everything?!

I cleaned out his bathroom as well as the nightstands and dresser today (the chest will have to wait for another time – his clothes are there). There must have been every card they had ever received stuffed in both nightstands. I went through every one of them. Some I just glanced at the sender’s name; others, I read their words. I even found two un-cashed checks from my Granny to my Mother for her birthday. (That was my Mama, she wouldn’t take anything she knew would hurt someone else, especially her Mama!) I found their wedding rings and the watch Daddy gave Mom for her wedding present.

Maybe I shouldn’t do this just yet. Probably should have started cleaning out another room! Maybe I will go for the Laundry Room tomorrow?! It has a LOT of cabinets that need rearranging and going through! Hopefully, will be less painful too!

I went outside today! YAY!!! (Well, maybe ‘Yay’ …)  The shrubs needed pruning so badly. I think I managed to trim 4 before I started hurting so much I had to quit. This stinks! I can’t do hardly anything without hurting. The more I do, the more I hurt. It’s not one of those things you can just “work out”. I just wished people truly understood Fibromyalgia! … *sigh*

I think this is going to be a late night… didn’t take anything to ‘make’ me go to sleep, and it is kind of too late now unless I want to stay in bed until NOON! 😦 I really need to get on some kind of schedule!)

Dear Lord, I thank You for this day. For allowing me to remember happy times; for allowing me to see the beauty You created just for today. Thank You for allowing me to cry over my parents. Thank You for giving them to me for the time I had them. You really knew what You were doing when You chose them for my parents. I was truly blessed. Thank You! I will miss them for the rest of my days but I am so grateful to know You have them in Your arms for all eternity and are together forever as they were meant to be! Please help me through this time. You know what I need and I need a miracle, please. Forgive my sins. If You give me another day, help me to use it the way You want. In Jesus’ name, I pray. Amen. 

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What Could I Have Done Differently?

His life ended short because I stopped giving him the cigarettes he so wanted (even though he couldn’t sit to smoke them without supervision) and put the rails up (for his own protection). When he couldn’t get what he wanted he just gave up. It’s my fault he is not still here! He would have kept fighting… I know he would have. But what kind of life would he have had? … He sure didn’t have any kind of life the last few months… I am so stinking selfish!!!

God, this hurts so much. Did I shorten his days? Is it my fault? Did he leave us too soon? … (I remember going through this same thing when Mama died.) What could I have done differently?! I know he had no kind of life the way he was but did I do something to make him give up completely? I am so sorry if I did! Am I just being selfish? I’m sorry! I just want my Daddy back. I tried my best to take care of him and protect him from himself… or did I?!

I won’t ever forget his face when he sat up in bed and shook his finger at me in anger… cold black eyes, muttering something I couldn’t understand but I knew he was NOT happy!

Dear Lord, I am hurting. How long is this going to take?  I am feeling guilt and wrong doing… PLEASE forgive me if I did this caregiver thing all wrong! I sure didn’t mean to… I tried to do everything I felt was right in my heart. It was a tough job and I really didn’t have enough experience with the end of life… Please forgive me! Help me find peace with all of this, please. In Jesus’ name, I pray. Amen.

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Forcing Myself

The sleep thing still isn’t working. I hurt all night therefore, didn’t sleep. Maybe one day it will all work out and I will be able to sleep again.

I forced myself go outside. It was a beautiful spring day but I didn’t want to do anything (nor did I feel like it) but things need to be done around here. Nothing got done that actually needed to be done but I cleaned up the yellow-jacket traps and refilled them then put out the Hummingbird feeders. The interesting little creatures hadn’t crossed my mind this year until a neighbor called to ask if I had seen any yet. Then I washed a spare litter box I plan to give to Daddy’s Nurse for the new kitty she will be getting for her little girl.

It was so quiet around here today. I could hear a mower in the distance and the birds singing. I’m not sure a car even passed by. Very unusual but oh so nice. Everyone must have been at Barber’s Motorsports Park for the Indy Race (which I won tickets to but gave away – just not my thing) or in Tuscaloosa to watch the Blue Angels fly (I would have enjoyed that once upon a time).

I don’t want to get out of the house. I don’t want to be around people. Can I just lock myself away?

Dear Lord, please help me. I just want to hide from everyone. Can I do that please? Will You please allow me to be self-sufficient in my own little world? In Jesus’ name, I pray. Amen.

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