Mixed Emotions


Easter Day, a sunny, warm and a day of new hope. Easter bunnies, family gatherings and candle3plenty of food. This is what I see. Although in reality it isn’t always that way. Some go to Sunrise services and others don’t. Some celebrate with families and others are alone. Today it is not uncommon to have to work versus family time.

Some are all about the candy and others look out their front windows remembering the past holidays. I had a mixture this year. I had one of my children here with their kids. We had an Easter supper. I had my brother Al here. There was also plenty of chocolate and candies spread out through the house. Eggs to hide and find.

Plenty of laughter with stress and tears added in were parts of my day also. I took photos of the grandchildren finding the eggs. I did not take any photos of Al this holiday out of respect for his pain.

When I went to the facility to pick up Al he was asleep at the dining room table. I woke him up but I didn’t get a smile. Taking him back to his room to get his coat on the nurse stopped me and we talked while Al was using the restroom.

She told me “Al had a very bad night. He was up several times with stomach and side pains. He woke up again at 4:30am crying. He had a bad dream.”

Al’s dream was told to me by the nurse and it was short and simple. Al had told her,”This is my last Easter with my sister. God came to me in a dream and said I am now going to go home very soon. I will never see my sister again.”

I should add here that Al suffers from pains in his ribs and stomach from the new tremors in his chest wall muscles. I didn’t ask but I hope that which ever nurse was on duty that she consoled him as I would here at home.

When I first brought Al into the house he spoke non-stop to my son. He grinned many times at the grandchildren. This lasted about a half an hour and then it vanished quickly. I never saw it again.

I saw him looking at the cartoons with the kids and then doze.Through out the day if no one was speaking to Al he was dozing. He wanted to take a nap but from the moment of this request the legs no longer helped. Parkinson’s Disease had taken over his legs and arms. He couldn’t stand from his wheelchair. He couldn’t take one step.

It was very difficult to get him to my bed. Because he is not home yet I do not have a bed for him in his own room. I will be getting a hospital bed when I know when he is coming. If I could afford one or find one cheap or free I would have it now. Medicare won’t help as long as he isn’t here, so I have to wait for a miracle.

It took some time and work to get him to my bedroom but I did it. When he woke from his nap his body movement was worse than before. It took two of us to get him in his wheelchair.

I know what you are thinking right now because I have thought the same thing. But, things will be different when and if he comes home. His bedroom is an easy reach where mine is not. He will have his hospital bed and I will have help most of the time.

He didn’t smile anymore. He was lifeless in his seat. He didn’t eat much at supper. I finally convinced him to have some ice-cream but he turned down the other desserts. I felt so bad for him. He was tired from lack of sleep the night before. He was in pain from the new tremors in his chest cavity.

I am saddened by the news that his time is likely shortened. I have been told he may have six months to a year. The terrible Parkinson’s has now damaged his eyes, his heart and has now invaded the muscle lining the chest walls. His heart is going on triple speed. He is exhausted and I am standing here doing absolutely nothing.

I don’t know how to help. All I can do is keep being here for him and loving him. I am waiting on a call from the Heart Doctor as I write. I don’t know what is going to happen when she calls but the hospital said I had to notify his heart doctor within three days. I had to wait for the weekend to pass and did make the call this morning.

Yesterday before Al and the kids came over I was wishing for a good day for all. I watched outside my house as black birds or crows circled around the property. I wondered if they felt lost like I do.

So the day was Easter and I have my precious memories. Along for the ride was some laughter and some tears. It was a real day of mixed emotions.

austin and caiden egg huntcaiden and austin egg huntegg hunt 6egg hunt 7

44 thoughts on “Mixed Emotions

  1. You are in my thoughts and prayers as well. I haven’t had to deal with Parkinson’s, but I have lost enough in the last few years to know the pain of wanting to help and the pain of days to come. We do what we can do and wish there were more alternatives. We cope with the knowledge that we did all we could do.

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    • Sometimes I feel like a robot
      Standing still in place
      My body making no motion
      But my heart is speeding a race……………………
      Thank you my friend, Graypoet……….

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      • A heart that is racing
        Let’s us know we’re alive
        Whether pleasure or pain
        For peace we try to strive.

        keep your head up, you are appreciated.

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  2. I’m glad you got to spend it with your son and grandchildren. I’m also glad that your son was able to visit with Al. Maybe he will get to spend more time with you and Al. We pretty much expected Tata to nap wherever he was after he ate. I am sorry about Al’s pain. Pain can be easily controlled but I have no experience with it where Al is experiencing it. The only problem with meds like morphine is it may make you sleepy. If they tell you they can’t give him a narcotic because it is addictive talk to his PD doctor and get it. Drug addiction is not a concern right now. SSI should provide for the bed shouldn’t they? I got ours through the VA. If you didn’t live so far away I would give you one of ours but it would cost more to ship it to you than it would to pick one up one Craigs List. Wish I could be more help Terry. I can pray..

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    • Al is on a very strong pain patch. He can have no other pain medications for now. I can always tell when he has a new one replacing the old one. He gets very sleep the first day. They replace them every three days. I am not concerned about his drug addiction. I m sure he is addicted but who cares anymore…………I can get a bed once I know the date he will come home but until then no they won’t put it here in the house. So for yesterday it was a hard struggle not having that bed. You being my friend is the best gift you can give me. This is what I want more than anything. A friend who understands, who has the compassion as you do and doesn’t run off

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  3. Oh Terry my heart aches for you, but to know God spoke to Al through a dream what a blessing even if the message was not what you wanted to hear. Just think …it means al is right with the Lord and when it is his time he will go to the best place ever!! No sorrow no pain for him ever again. what a blessing! Keep your chin up as much as you can my friend I know that it is hard but take care of yourself and I am praying for you and Al
    so glad you had family to spend the day with, the g-babies are so cute!!

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    • I guess I wanted Al to be excited over the Easter candies and the whole get together but he wasn’t. I am expecting more and receiving less as far as my ideals. I need to go even smaller and be thankful that he spent the day with me

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  4. So sorry, that Al is getting worst by the day now … you are both in my thoughts. Why haven’t his bed arrived yet???? He should had moved back home until everything is in place … and the help he needs are all in place. You have to stamp the foot here, Terry .. because it’s getting to heavy for you. I’m glad that he are home with you, but you can handle him … on your own.

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    • he was only here for Easter Day. I took him back last evening. He won’t come home until approval has been given to me and his bed is here. I guess I should be thankful he got to come home even for a short visit

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  5. Hello my friend, So sad to hear about Al’s condition. We have a mighty God who can do anything. We just have too trust. There comes a time, when the one who is undergoing so much pain, feels that perhaps, he/she wants to go “home.” I have often asked myself, whether or not, there is some kind of communication going on between God, and the one who is hurting. Perhaps, in his own way, Al has somehow communicated his most inner feeling with the Lord. Only they know. As the caretaker, you do what you can for Al, but you must also take care of your health. Be strong, let go, and let God. I continue to pray for you, and the rest of your loved ones. Blessings my friend.
    Johnny

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    • Johnny hello. Al is ready to go home to Heaven. He is tired and sick of the constant pain. There is one part of me that understands and the other half of me clings to him. It is so darn hard to watch him suffer so why do I fight it so bad?

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      • Terry, We all fight hard to cling to our loved ones, even though they are suffering. We don’t want to go through that phase of missing them. We are certain that we will be with them someday, but the thought of not comunicating with them, nor ever seeing them again, is heart wrenching. As hard as it is, we have to let them go. All we can do is to ask God for strength. Enjoy him as much as you can. Should God see otherwise, and heal him, we will rejoice with you. Should He call him home, thank God for His Mercy towards Al. Blessings.

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      • You are right. You are exactly right. I don’t want that separation between us at all. God is amazing and can heal, but I need to remember, he can heal for my glory or for my brother’s glory

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  6. You are doing a lot and all you can. Just being there and coordinating things is what your brother needs from you, after all. You’re not standing around and please remember how important a caregiver is, even if it’s not 24/7 yet. My grandma. mom, and I used to take my 6′ grandpa to Dr. appts. after he’d had a stroke and was wheelchair-bound. He was a thin man that felt like a ton for 3 short women trying to get him in/out of the car and dealing with the chair, so you have to give yourself a pat on the back, my friend. It’s hard work, both physically and emotionally.

    I’m happy that Al had a good time while he lasted and I know it’s hard to watch from personal experience w/my step-grandpa’s PD. I will never understand sickness and suffering for yrs on end. I do hope you had a nice Easter and no worries about the “JC” comment the other day :-). I’m the minority on here and just happy I’m welcome (I hope). If I had a dime for every time someone wished me a Merry Christmas, etc., I’d be rich and ship you that bed myself! Sort of a funny thought. I just say, “Thank you and Happy Chanukah,” although the 2 have nothing in common–just fall around the same time. Life in the America–gotta love it! Lol…
    Alisa x

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    • You know what is so wonderful about you? You understand, you feel what I do. I would be very disappointed if you quit stopping by Alisa. I would hunt you down. You are always welcome here on my blog and in my life.
      Mensch!

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      • I’m so glad. I’m having to add an addendum of sorts to my blog as I need to start moderating ALL comments. Without naming you, I made a reference to you as I surely didn’t want to come across as a bigot and I do spend so much time commenting away over there! You’re my devout, Chrisitan friend who I adore! Glad you like mensch–I have a whole post where I squeezed in Yiddish. It was my way of saying who I was. I was worried and you’ll like this–my lil’ bother said, “Well, if you were black, you couldn’t hide your skin,” Good point. I look Jewish in real life and was tired of hiding. Well, I’m off to bed (secret vampire) and writing in that darn box I can’t see so hope you can read this! Big hugs…A (appreciate your support again!!!)

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      • Good nite my dear friend. Rest well and talk to you later on.
        Mensch
        I like it that you remain true to who you are. Don’t change this…….

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  7. *hugs* all you can do it be there for al. It’s a horrible position to be in not being able to help but you ate helping you are there and loving him and doing the best you can to remind him he is not alone.

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  8. I’m thankful for the time that you had with the family. I appreciate you cherishing the time you have been given to be with Al. All we can do is continue to pray. My prayers continue. Lord bless you.

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  9. Al is sure fortunate in this winter of his life to have a wonderful sister like you. It is hard to watch someone close to you deteriorate (I watched my own younger brother do that) and feel helpless to do anything about it. But your being there for him is a wonderful gift, whether you feel like it is or not. I so wish and pray that something will help ease some of Al’s suffering, and I’m glad he was able to enjoy the family for a least a little while. My prayers are with you.

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    • Hi Becky, you have given me a very nice comment. All I know is I love him and want what is best for him. To have as little as pain as possible is my goal. I am glad I was able to have him home for the day

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