Life Sucks


"Kellogg" brand "candle stick&q...

I have sat down here two days in a row to write and can not. I am brain-dead I think, too much drama going on.

Al is having worse tremors than before. If he isn’t asleep the tremors are at full force. He wants to come home, and I can’t make it happen any quicker. Each day I wait for that phone to ring for the appointment to be made. This is the last appointment before he comes home and the phone remains silent.

I had a phone call last evening after business hours. It was from some collection agency wanting to speak to my brother. I explained that I was his guardian and he couldn’t speak for himself.

http://www.youcaring.com/medical-fundraiser/too-much-pain-and-too-little-money/55964

They said they wouldn’t talk without the legal papers showing who I was. I said I would fax them, but then she told me it would go to another office and would be looked at this morning. I explained to her about the Hipaa laws and that I didn’t want just any eyes seeing private things.

She told me to fax it anyways but I refused. This morning I called this business and they had me on hold for quite some time. When they finally came to the phone they didn’t show any collections for him. They told me to call the hospital and doctor’s office.

I did this and still nothing. I know when I got off the phone last night it only took that one phone call to stress me to the max. I couldn’t do anything until this morning. I started fretting about what could be wrong. I always pay his bills, so what was up?

As I became more agitated I sat here at the computer and cried for no reason. I asked God, God can I put this in the worry basket of yours? I just can’t deal with anymore. I am tired Lord, oh so tired.

I don’t know if God took care of this or if this was a spam call, but there is no evidence of owed bills today.

I rearranged my living room and moved furniture into funny areas to make our home as open and wide as possible for Al’s wheelchair. My family is having issues that I can only be a good listener and a devoted Mom but I can’t fix anything.

I am just overwhelmed I think. The straw that broke the camel’s back was I do not usually go out after supper unless it is about Al or I am a tag-along with my son. I made special arrangements to deliver one of the pieces I sold from my antique site and the person was a no-show.

The gas was wasted and so was my mind and time. I came home and wrote an amendment  that from now on they have to pick-up. If they don’t want to show or have the guts to say they changed their mind, at least it isn’t my gas and time being wasted.

Wow, I sound like a harsh mean old woman. I am not really. I just get sick of crap, as Al would say. He says I am so sick of this crap. Parkinson’s doesn’t care if it ruins me. It doesn’t care if I spill my food all over me and the floor. Darn old Parkinson‘s.

I have to agree with you Buddy, some days life sucks.

No More Joking


I swear for the last time I am not going to make remarks or joke about things anymore. It always comes back to bite me in the rear.

One time many years ago I prayed for so long to lose weight. I got my prayer answered but it wasn’t God answering. I got deathly ill. I had a rotten gallbladder, gang-green and too many gallstones. I lost a ton of weight, in fact I almost died.

Another thing I joke about is when you see me skinny or looking just right, I will be sick. Now it is my brother who is losing weight. He lost 7 pounds two weeks ago. Last week he gained three pounds back, and this week he has lost 9.2 pounds.

No one seems to know the answer. Not the doctors or the nurses. I am wondering if it is the new internal tremors along with the outer tremors we see.

Is it the journey of Parkinson’s in itself? I am no longer laughing………….alvin and meLonely_candleI am thankful now that Al has some extra baggage on him. It is allowing him more time.

 

 

 

 

 

 

 

 

 

 

http://www.youcaring.com/medical-fundraiser/too-much-pain-and-too-little-money/55964

 

 

Nightmare at the Hospital


Today you will get a break from my writing. I am so tired and I feel like I can only write once today.                                                                                                                                            Blue_candlealvin

We all have at one time witnessed or been a  part of someone in great pain and maybe even dying. It is a horrendous time to go through, but we look at the end of the rainbow. We know this too shall pass. They will either get better or be pain-free in heaven.

Yesterday evening about 11pm I received a phone call from Al‘s facility. He had been suffering from chest pains. They gave him three Nitrates but it didn’t help. They were letting me know they were sending him to the ER.

I was shook up a little but sad to say I am getting used to the late night phone calls. I got dressed and went to the hospital. I beat the EMS by about five minutes.

I want to say to never get comfortable in your situation. Whether you hit the lottery, or you are barely making it, or as in Al’s case repeated trips to the ER should not be taken lightly. Life does change and when you think you got it all going on , things change.

I had never seen Al like this in my life. This pain was worse than any pain he suffers from the Parkinson’s Disease. He grabbed his chest I don’t know how many times. He cried and he kept crying out to any nurse that walked by saying, help me, help me, I am not going to make it.

He would be lying down and then all of a sudden jump up into a sitting situation. His eyes would be popping out pretty much and he would scream in pain. He was yelling my neck hurts, my chest hurts and my arms feel funny. The heart monitor went nuts. His heart was showing a heart rate at 300 many times.

They did many tests on him but the heart enzyme test came back negative. So thankfully he didn’t have  a heart attack. But in some ways I wish he would have because quite a few times people can have surgery to repair a damaged heart.

No this wasn’t going to be so simple. I was explained that there are muscles lining the heart and muscles throughout the rib cage. The Parkinson’s is fully engaged in his chest wall.

The nurse kept saying to me, his blood pressure and heart can’t take much more of this.

I was sick, not physically but mentally. My stomach hurt and burned. I couldn’t even cry I was so worried about him. To stand there holding his hand and have him tell me he wasn’t going to make it this time broke me up bad.

They couldn’t do anything for him until all the tests came back. This time period was four hours. After the doctor got the clear he gave Al an IV with morphine.  In less than five minutes he was out. The monitor calmed down and he was resting peacefully.

I looked at his gray nails and his pale face and I could not deny any longer this was serious. It was as if the Doctor read my mind. He came in and took me out in the hall. He said, Al can’t take much more of this. Although he is not having a heart attack, every time he has tremors in his chest cavity his heart is trying to adjust to the speed of the tremors. If you are planning on taking him home as you stated earlier, I suggest you get him home.

They kept Al another hour to make sure he was going to be alright from the IV. Along with his powerful pain patch, three nitrates and four baby aspirin and all the other medications in him, he had to be watched carefully.

I went outside and got in my car. It was so dark with a three-quarter moon, but yet so quiet and still. I felt funny inside and then I broke down. The problem with release was it didn’t come. Only a few tears fell and then I drove up to the front door and got Al in the car. I took him back to the facility.

I got home about five am this morning and slept for a few hours when the phone rang. It was the doctor’s office. They told me that they have increased the dosage of Al’s pain patch and have put him on another pain med.

Al seems to live on pain medications more and more and there is no hope or thought anymore that he may become addicted. I did say in an earlier post that I just wanted him as pain-free as possible and this is what the doctors are doing.

Please remember even one dollar adds up. Major credit cards accepted. If you use Pay Pal please make sure you mark it as a gift so you are not charged.

http://www.youcaring.com/medical-fundraiser/too-much-pain-and-too-little-money/55964

God, Are You Opening a Door For Me?


Parkinson's disease patient showing a flexed w...

Parkinson’s disease patient showing a flexed walking posture pictured in 1892.

There is a huge part inside of me that is screaming and jumping up and down. I am filled with excitement and thanking God for helping me to maybe make a dream come true.

To let caregivers and families know more about Parkinson’s Disease. To have the chance of helping others to not have to travel this long and painful journey to go it alone is a dream I have prayed about for months.

Today I received a comment from Melanie Winrow. Melanie and I met each other several months ago here at WP. She is a wonderful and positive person filled with talent. You may visit her website at;

http://www.writing4oneandall.weebly.com

I was so excited to know that God may be  opening a door for Al, others and myself, I just had to share with my precious friends. Below is her comment to me. You may also be able to see it in the comment section of my latest chapter from Al’s Life Journey, Chapter 6.

Comment:
Terry, I’m starting my own radio show next week (guaranteed
4000 listeners).  Would you like to be a guest to talk about your
book?  I still keep all your writing (a grand total of 355 posts since I
first heard about you) and I can tell you that you have talent.

Over the coming months I will be doing a
number of charity shows (radiothons) to raise money for both Alzheimer’s
(first) and Parkinsons (in a few weeks time).  If you’d like to get
involved with any of that, you’d be welcome (I know you have enough on
your plate.  Importantly, is there anything Al/you need that we can buy
if we can raise the money?  If so, I’d be happy to do so (for example, a
hospital where a friend lived lacked, of all things, an MRI scanner.
For lack of that, she was sent to Portsmouth as the nearest place – and
died en route.  We would have raised the money for a scanner if we’d
known.  It doesn’t have to be anything that big – anything at all that
would make your life (or the lives of other sufferers easier.

I am thinking of you and Al.
Take care
All my love
Mel XXXXXXXX

Al’s LIfe Journey, Chapter 6


Panic attack

Panic attack

This week could have been better for me. I have suffered minor set backs of almost panic attack feelings. Stress and tight muscles as I went to bed and waking in the mornings  to the same feelings. I wondered if I even slept well at all through the nights.

This has been happening to me ever since the day I thought Jesus was standing very near to me. I think that my mind races like a spinning top about all kinds of things. Al coming home soon. Will I be able to do everything I need to when he is here? The inner guilt of choosing Al over working outside the home. Wondering now that I have written a few chapters what really happened to Al when he was little.

It just seems I do not stop the thought process, and I have learned to hide beneath my covers and sleep. This doesn’t help me long-term. I realize it is a temporary fix but at times it is enough to relax me some.

As I was about at my wit’s end last evening where I just wanted to pull my hair out, fall to my knees in tears, a good friend of mine from Canada called to chat. She told me that she felt she was supposed to call.

God has the perfect timing. He knew that I had enough. My bucket was ready to spill over and he sent a friend to the rescue. We talked for over an hour. I almost didn’t want to talk at first. It is very difficult for me to release the silly feelings that I carry inside. It is much easier for me to pretend that life is good and all is well.

My friend is a very strong Christian woman and so I was able to confide in her questions that had been spinning in my mind and we talked through them. By the time we hung up my tight chest had relaxed and I felt an inner peace I had not felt all of this week.

She made me see the light about caring for Al versus having money in my hands. She told me that God will take care of my needs as long as I am sincere. I feel very sincere when I say out loud, I want my brother home with me. I want to give him all the support I can. I want him to know that he is loved and I will be here with him through this journey of his life.

Maybe once Al is home I can get the routine down pretty well and pick up a job caring for someone else while he is at Day Program. I dare to say that my first book is now done and getting ready to be published very soon, that this would make me any money. I didn’t write it for that reason, to get rich. I know that is a foolish dream.

I wrote it for my children for when I am no longer here. I wanted to leave a mark here on earth, a memory of how I think, but if God wanted me to make money off of it, he will. He is an amazing God and what ever he wishes for me will all be good.

I think one of my deepest thoughts that fly around in my head is Al. When I read back what I have written I see what I was put through at a very early age. I see  how my innocence was stolen from me. But, what about Al? Surely there are reasons that he was so afraid in those young years. I don’t believe that children are born afraid. Something or someone has placed that fear.

My friend and I prayed together over the phone that God shows me how to help Al release the hidden fears he has kept buried all of these years. I can do nothing to help him alone. I have tried so many therapy sessions with him and we get no where. But God can do anything.

It won’t help Al rid the disease of Parkinson’s Disease. It could release bad memories and bring him a release and therefore joy. Seeing Al carry joy in his heart and the two of us leaning on each other can not do anything but help us both.

Knowing that Al believes in his heart that I really do love him would be wonderful. To see him trust me totally would be so wonderful. So now I ask the Almighty God to help me to help Al.

Pain and Emotions


Parkinson's UK balloons

Parkinson’s UK balloons

I got a call from the nurse where Al lives and she told me that the family doctor had just been in and had prescribed an anti-depressant for Al. I freaked and asked her when they were going to give him the first dose and she said the first thing in the morning.

 

I asked her to please wait until I got back with her. I needed to talk to the doctor. I called and left him a message and he returned my call immediately. I told him about how two years ago Al was last on one of those types of medications. I explained how he had a terrible seizure from it and he couldn’t walk for almost six weeks.

 

I told him my fears and asked him if he still wanted to give it to him after my information. (This doctor was not our doctor two years ago)

 

He said, “Terry I just saw him. He is in so much pain and so depressed and sad. He is on the pain patch and now two more weak pain medications. He can’t take anymore. There is nothing I can do but to keep him comfortable. We have to try to lift some of his sadness. I have weighed the pros and cons and the pros are slightly in his favor. He does have the risk of seizures again but we won’t know unless we try, ok?”

 

I started crying right there on the phone. He told me, “Parkinson’s is a rough and dirty disease. It is beating Al up. How can you and I sit here and watch him suffer every single day.”

 

He didn’t know it but I was sitting here nodding my head. I knew I agreed with him but it just seems there is no licking this disease. I told him that I would call the nurse back and give her the go ahead for the medication.

 

I know I am supposed to be strong but here I am once again, a big weak mess. Watching the life disappear out of his life is harder I think than anything I have witnessed in a few years.

 

 

Keeping the Secret


Micrograph of an artery that supplies the hear...

Micrograph of an artery that supplies the heart with significant atherosclerosis and marked luminal narrowing. Tissue has been stained using Masson’s trichrome.

I don’t plan on being here tomorrow for a while so I went to see Al today. He was sleeping when I arrived. I woke him up and he waved and I saw a half a smile. He sat up and began to tell me about last night.

He said it was real hard to eat because he didn’t feel good but he made himself eat. From 8p to 12a he said he felt funny. He seemed pretty good now and even after I asked him the 20 questions I didn’t get any real answers.

He told me a story about how the aides made him walk behind his wheelchair last evening after supper. I asked the nurse about it and she talked to Al in front of me. She told him that she pushed him down to his room. Then he went on to another time when he used to walk and he didn’t feel well enough to walk. She told him he was talking maybe about last week.

It was obvious that he was having some dementia. This nurse is my favorite and I know if she said she pushed him, she did. He and I ate lunch together but he was pretty much in the dazed look for the most part. He kept telling me he didn’t feel good but he didn’t know where he felt bad at.

He was eating and except for the Parkinson stare I couldn’t see anything. As usual I finished my meal before him so I just people watched. I was watching Al trying to get the food on his spoon but most of it was going in his lap.

Then I saw the problem. I saw it but I couldn’t say anything to him. I saw his nurse standing at the cafeteria door so I told Al I would be right back. I walked up to her and asked if she had a moment.

We found a little spot where we could talk and I told her that I thought I knew why he has not been feeling well. I explained about his gray nails. When I looked at Al trying to eat the gray nails stood right out at me.

My stomach started hurting and I could feel my heart racing. She said, I am sorry Terry. His heart is just really suffering from his disease. I knew in my heart that is what she was going to say.

I swallowed the lump beginning to form in my throat and told her thanks for her help. I plastered my smile back on my face and wiped the one tear trying to run down my face. I walked back over to where Al was sitting and I sat back down.

He gave me another half-smile and I placed my hand over his and all I could get out of my mouth is I love you Bud, don’t ever forget this. He gave me a big smile then. He took his hand and rubbed over his chest area and I excused myself to go to the ladies room.

I came back in time to push him back to his room. I helped him on the potty and then I came home.

I Cleaned House, No Not My House!


US Navy 110308-N-7491B-039 Surgical technician...

Today I cleaned house. Oh no, not here. I already did my Spring cleaning. I mean Al‘s room. I took in some pairs of shorts and tank tops. He saw me when I entered but I didn’t get a smile or anything for a few moments.

Then he started crying. It was obvious that he had been upset long before I arrived. I put down my goodie bag and sat down beside him to find out what was on his mind. What was the culprit you ask? Good question and I am going to spill the beans right now. Wetting, yep that’s it, wetting his briefs.

For some reason, which I will blame Parkinson’s Disease this past week there has been a change in the bladder area. He was so upset and embarrassed because he had wet himself.

I tried using different reasons as to why this was happening. I was hoping he would reach out and grab one of them but he didn’t. It seems what is happening is that the knowledge of realizing he has to go pee comes late in the connection of the brain.

He realizes he has to go and either he doesn’t remember to put his light on, or he puts the light on and no staff arrive or he just gets late notice that he has to go. I do know that he was sitting there waiting to be changed but there was no call light on.

The light bulb inside Al’s head didn’t go off so I reminded him to push the button. I looked at his clock and it was six minutes until help arrived but it was too late. This in turn brought about more tears.

This is  happening about every time now when he feels the urge to go potty. I think it is a combination like picking the Power Ball numbers. A little Parkinson’s, a little more PD for not using the call light, and a little bit of no staff.

I finally think I found a reason he was able to grasp. I explained that many of his new friends at the Day Program wore briefs and had accidents too. I told him that no one knew they were wearing briefs as it was a hush- hush thing.  I asked him if he knew this information and he said no.

I seemed to be able to help a little so I went about tearing into his closet. I pulled out all long sleeve shirts and heavy-duty pants. I replaced them with the clothes I brought. I took  his winter coats and replaced those with a light-weight Spring jacket. I washed down his bed side table and placed the tower fan for him. Yes, he is still sweating a lot. I learned the heart is causing this excessive sweating.

Without him realizing it I made a trash pile of old newspapers back from when he first went there to live. I found brown paper sacks where he had won goodies at Bingo and they were full of empty wrappers and even one nasty looking banana peel. Yuck!

It was time for lunch then. I had called in and ordered a lunch this morning so we ate together instead of me watching him eat and wishing I was. He did pretty good with lunch and didn’t make too much of a mess for this meal.

His driver appeared and was waiting so she could take him to Day Program for a couple of hours. I pushed him back to his room. He had to go potty he said but he had already wet down in the lunch room he admitted. This caused more tears and again more explanations.

I put the light on for him and seven minutes later someone came in. When help finally arrived I asked her to change his heavy pants into something more appropriate for the weather. He chose shorts over thinner pants. She changed him and he and his driver were off with him in tears, still embarrassed about his accident.

I am glad he was able to go. Hopefully his mind was more occupied with friends than wetting. I was told that I needed to take his two walkers home. The doctors orders had come in and there is to be no more walking and he needs to be pushed everywhere in order to save his heart.

I looked like Santa Clause when I left. The car was stuffed with two walkers and a big trash bag full of winter clothes. I finally got the car packed down and headed for home. When I got  inside the phone was ringing. It was the facility.

There was an appointment waiting for Al to have a scope done for his swallowing issues in the esophagus. I am not sure if I made the right decision or not but I have not heard Al complaining much about swallowing since they changed his diet to puree meat and mechanical soft. I also now know that his heart is working over-time and has been damaged.

The doctors would put him to sleep to look down his throat and I chose not to put him through another procedure at this time. I called the number I was given and spoke to the nurse about my concerns. I asked her for her advice. She explained that at any time if things looked worse we could reschedule.

I felt comfortable with this. He wasn’t going to be turned down for an appointment at a later date, we were just putting it on hold until things progressed more in that area.

I felt good about today’s visit. I cleaned house for him. I tried my best to get him to understand the complications of PD and wetting one’s self. Lastly, he was out on an outing. I can tell he does not feel well but at least he was talking to me and he ate all his lunch today.

Al Fell Again and Still I Was Not Called Right A Way


The Cleanest Floor You Will Ever See

I haven’t posted since earlier this morning for two reasons, maybe I should say three. 1. To give you all a break from my frequent posting. (I’m sorry, I can’t help myself. I guess I am a chatterbox.)

2. I did some remodeling in my living room and that took the bigger part of the day.

3. I received a phone call this morning from a nurse at Al‘s facility. This call has been on my mind all day. Let me tell you something, there is no rest on the weekends for the wicked. Except I am not wicked.

At 1am in the morning someone noticed Al was not in his bed. They went to his bathroom and he was on the floor. The report was that he was on hands and knees so they didn’t consider this a true fall. They said he was fine. She told me he had a small rug burn on him.

I am thinking small as in the small bruises that he received two weekends ago when he fell. Those bruises were the size of peaches. I kept fussing with myself whether to go in or not to see him. I was wrapped up in my home project and they told me he was fine.

I did not end up going but there is part of me that wishes I did. Tomorrow I will be in there for sure. The nurse told me that Al got rude with her. I hear this word quite often, rude. Al’s mood and personality has seemed to change these past weeks. He smarts off they say. He is rude I hear from them.

I called a good friend of mine who has a family member who has Parkinson’s farther along than even Al. I asked her if this could happen, the personality change. She said absolutely yes. Caused from PDD, Parkinson’s Disease and Dementia.

She said that he may have said it and then possible later he wouldn’t even remember it. I know different times I have scolded him for his rudeness and he starts crying immediately stating he never said anything like that at all. I back off because I have no proof one way or another.

The strange thing to me about the call is I don’t like being called 8 hours after the fact. I have told them repeatedly to call me as soon as they know he is stable. I don’t give a hoot if it is in the wee hours of the morning or not. I want to be notified. I want the choice to either go in or not to check it out. This is not the first time this has happened.

His last fall they told me almost 48 hours later. The other thing that bugs me is how in the world did he get a rug burn? The only rug or carpet in the whole building is in the hall. This has me puzzled if he was on his hands and knees. Did he fall and was trying to get up? Did he go head first like he usually does? But still, how did a burn come on him.

The nurse told me that he told her he wasn’t going to  use his call light anymore because he waits so long for staff to help him that he pees his pants, and he gets very embarrassed when he wets himself. The wetting himself is happening more and more often. I don’t think it has anything to do with Al holding it or not. I think it is the PD.

I have asked before about putting a Bed Alarm on his bed and his recliner. They declined my suggestion stating Al doesn’t want it. They think he will become agitated and cause more rudeness or attitude for them. I say get the alarms and use it. The loud noise may scare him enough and remind him to put the call light on. He does forget to use the light. This has been an ongoing issue for some time.

I asked his neurologist about it last week and he said Al doesn’t want to fall intentionally. His Dementia is causing him to forget. In Al’s mind he just assumes he can walk so he gets up and tries.

Monday morning first thing, I am calling Al’s doctor and telling him about the falls that are happening more and more. I am going to ask him to write a doctor’s order for bed alarms. I have no doubt he will do this for me and Al’s safety.

Why did they wait so long to let me know…………Sorry friends, I am still upset over this. Tomorrow a new day, a new challenge, and a promise of hope.

Please Let Him Live in Peace


A jeweler's screwdriver

candle3

Yesterday after the result of finding or not finding the five dollars missing from Al‘s wallet it didn’t end. Not only did I have to leave him with big tears of non-understanding from where was his money and why did someone take it, but it got worse through the evening.

I received a phone call after hours from the Social Services Director. She had gotten wind of the missing money. I am not sure what promoted her to go through his entire room but she was calling me to let me know she played investigator.

In front of Al and I am sure he watched her every move she went through all of his drawers and his collections on his bed side table and in the window sill. She told me she picked up one of his coca cola cans that is vintage and shook it. Why? I don’t know. She heard a rattle so she tipped it and found three small screwdrivers inside.

I didn’t know they were there. She said these were weapons or could be used as weapons. She also saw that he had fingernail clippers and those could be dangerous.

I admit if he tried to clip his fingernails with his tremors he could hurt himself. She demanded that I remove these and the screwdrivers. Al always used the tiny screwdrivers to take backs off of his collection pieces that used batteries. They obviously had been there the entire time that Al has been there.

I will go and get them. I guess I see her point but it was the wrong day to be in his room after the money loss. Then she told him she didn’t want his Easter basket of candy sitting on the floor. I saw the basket sitting beside his recliner yesterday when I was there. It made it very convenient to lean down and grab a piece without having to get up out of the chair.

She said he had too much candy. That is when I started to become a little defensive. I know, I may be too protective of him. I look at him different from they do. I see that the only things Al enjoys in his life are his coca cola collection and food. I purposely made him an extra-large basket of candy because I knew he would enjoy it so much. At this point of his disease I don’t really care how much candy he eats.

Yes, I realize weight is an issue with us. I know he has heart problems, but he has Parkinson’s Disease and terrible pain 24/7 and awful tremors. When are we going to just say “Pick the Battles”. Do we need to nit pick him constantly? Invade his room for weapons? Tell him about how candy will make him fat or not good for him? I am past that point.

Maybe I shouldn’t be. Maybe I should be even more on him to keep him healthy but for what? He is not happy. He is miserable. He has dreams about God taking him home. He prays to die. I don’t give a rat’s ass anymore about petty rules. Let him eat his darn candy. Let him alone, please.