First Day Home


Hi all my friends. I was very upset today. Not with any of you, not even with the facility. I was upset because I had to pay family gas money to bring Al home. Maybe I shouldn’t have been but I was.

With me getting over that quickly I was calmer than I…

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First Day Home


Hi all my friends. I was very upset today. Not with any of you, not even with the facility. I was upset because I had to pay family gas money to bring Al home. Maybe I shouldn’t have been but I was.

With me getting over that quickly I was calmer than I thought I would be. It took me no time to gather Al’s belongings and get them in the car. By the time my helper arrived, there was only one shelf to take off the wall and a three drawer plastic cart left.

Coming home was very warm and I knew Al was paying the price when I looked at him but once we got inside the house the air was on. He wanted to take a nap immediately. I got him settled and then started to put his belongings a way when the Hospice nurse knocked.

She and I spoke for a couple of hours. She wanted to rid some of the extra medications. Believe it or not he is on 18 medications. But when she went through them one by one each one was in three categories. They were either for pain, heart, or blood pressure.

It is amazing at what we put in our bodies to be able to live a while longer when we are ill. I was shocked at how much he was taking but sad that we couldn’t take him off any of them.

Instead of calling 911 to take him to the ER I now have instructions to give him pain medication from here, one of them every hour for two hours, call the nurse on call and wait. In a way it is nice to have your very own nurse involved and at your beck and call, and in another way, it eats at me a little that I won’t be able to take him to the ER in case he is having a heart attack.

But the truth be known, as I said before, the ER trips are for the internal tremors. And we all ready discussed the pros and cons at this point in his life.

The nurse and I discussed routes to go now that they are in charge. I won’t be taking him to the family doctor any longer. Hospice will get all of his medications. It is nice to have someone on my side.

I bet the company that brought the wheel chair and bed yesterday is perturbed. I didn’t realize that when Hospice is in charge they get the medical equipment,  bed, wheel chair, briefs, gloves, and bed pads. Now tomorrow the old company is coming to take back the bed and wheel chair and the new company is doing a pretty good job at being here at the same time setting up their equipment.

Al ate a small supper but did finish it. He had a cut-up in tiny pieces  burrito, cottage cheese, and get this, a donut, one of those dunking stick types. He did pretty good. He didn’t want to go to his room.

It made me feel good that he wanted to stay out in the living room with me. He had me put him in front of the TV and although it was very difficult to hold his head up, I think he listened, but I have to be honest, most of the time he slept.

I finally talked him into going to his room about 9:45, and he is sitting in his new lift chair, which by the way, it made it real easy to get him in it. He is drinking his diet coke, but when I peeked in a second ago, he was asleep. He sure does sleep a lot.

It sure is good to have him home again. I don’t care how sick he is, he is where he is loved and between Hospice and me he will get the best of care. Monday morning he gets on the bus and starts Day Program.

On That Friday Afternoon


I have sort of stayed a way from WP the past two days. I began writing today. I wrote a couple of posts so that I could ease into writing this one.

People always told me that God will reveal everything in his perfect time. I remember just a short time ago when I blogged about the cross necklace appearing in my hand when I was awakened by something urging me to wake up. I know how it got there. It could have been no one other than God. That necklace had been in my jewelry box for almost two years.

Do you remember me telling you that Al was to go to a new Neurologist on this past Friday? I didn’t really want him to go. We had a neuro for some time and I was content with his words that he had done everything he could for Al, but he would remain a PRN doctor, as needed.

The weekend that Al had tried to harm himself the Psyche doctor wanted Al to have a second opinion. To say the least I fought it tooth and nail. What a waste of time I thought. But after speaking to a friend about it, I was reminded that it couldn’t hurt to have a second thought from another professional with many more years experience on him.

Well I met Al over at the doctor’s office Friday afternoon. I hadn’t remembered it but we had seen this doctor  not long after Al had his heart attack. The doctor remembered Al and let us know we had been there prior.

He had so many reports from doctors and ER visits plus Al’s visit prior. He did a thorough exam and then asked me to come to his office. He left Al sitting in the waiting room while the two of us spoke.

He told me he had suspected Al had PD way back when and was amazed at how Al had declined in these few years. He added some more information to Al’s file and diagnosis and then asked me when Al was coming home. He asked me lots of questions.

When it was all done and the room became quiet, he began writing. He handed me one script. He added that there was no medications to give Al as there was nothing more to do. When I took the script from him and read it said, flashing starHospice to be involved. High risk of aspiration.

I looked at him and said,” I have tried to get hospice involved before, but they always say the same thing, there is no ending date for Parkinson’s Disease.

He looked at me and said, “now there is.”

Silence filled the room and I stared at him. He said, “Al is pretty bad. His heart has taken a big toll. I have all of the reports here that confirm it. His central nervous system is out of whack. His next step will be aspiration. You need Hospice now.”

“But you must have six months or less before Hospice will take over.”

“He does have six months or less.”

Tears filled my eyes and I sat there weeping until I could go get Al with dry eyes. As I pushed him out of the office and down the long ramp, everything became clear. God was revealing to me so many things.

1. Al went to the nursing home so I could have a break. God knew that now Al could come home because I have had enough rest I can carry this out to the end.

2. I knew exactly why I had taken the foolish move to Florida. It was for Al, I was able to give him some of his best years of his life doing things he had never done before.

3. I had tried so hard to get a job but couldn’t land one for the life of me. Now I saw, my time will come to work, I need to be here for Al for a while longer.

4. The heavy sweating, the constant tears, the struggling to eat and swallow. The internal tremors, the trips to the ER, everything became clear.

God has been letting me know by all the signs that he was going to take Al home. God knows that Al doesn’t want to die at the nursing home, so now he has perfected the timing and is sending him home. Everything is clear. I can see God’s plan.

Friday of this week Al comes home. He will get his wish and be able to stay here for the rest of his life.

The doctor, specialist, that I fought so hard to not go, was something God knew that I needed to do. The questions that I had asked for so many months, God knew that I would get all of my answers on that Friday afternoon.

Al and Me on Mother’s Day


By noon this morning I had received two text messages from two of my kids telling me Happy Mother’s Day. On my way to go see Al I stopped at the mail box and got my mail. Inside was a beautiful card from my daughter who lives outside my area. There was a very useful gift card inside. I had never received a gift card and felt a little embarrassed when I had to ask my daughter what to do with it.

She called me this afternoon and wished me a Happy day also. Then tonight I heard the door bell ring and there stood my one son’s better half and their two kids. They brought me a card and a pretty necklace.

I felt pretty darn special, let me tell you. It was real nice to have one day off from the bad crap I have been dealt with this week.

When I saw Al today it was a complete turn around. No, he still has Parkinson’s, but his attitude and personality was wonderful. The new anti-depressant patch had obviously worked. He cut up with jokes with all the staff that walked by.

He talked to me about different shows he had watched on TV last night. He even did some embarrassing things at the dinner table like farting. Each time he did it he just giggled. It was making my face turn red but he was really enjoying his musical talent.

The only thing that bothered me besides the toots was his one hand. All five nails were gray and stayed that way the entire time I was with him. Inside where I can’t see the Parkinson’s is doing its thing. I tried for the most part to ignore and not keep glancing at them. His other hand was normal color. I don’t know what that meant, one being gray and alvin graduation picturethe other hand pink nailed.

We had a good time. I took him soda and snacks for the week, and he sent me home with raisins and miniature snicker bars. He couldn’t get them opened by himself and when the aids helped him he couldn’t chew them. His jaw must be weak or his mouth or his chewing is becoming weaker. I know that he still chokes on foods so no more gooey snack foods for him.

So far we have taken out of his foods, any kind of stringy meat like roast. We have taken out jello because the tremors won’t allow him to keep it on the spoon. French fries have to be monitored if he eats those. Milk only once a day because of choking. Cake icing seems to get stuck in his mouth, so I monitor this. He can’t have any kind of white meat chicken, and all meats have to be ground. Most meats even ground are starting to make him choke. We are training him to take a drink after each bite of meat.

I stayed with him until he fell asleep in his recliner. About an hour ago I got a call from the facility. He fell again. No one was in his room, and according to the nurse, he must have reached behind him and unhooked the bed alarm and stood up to go to the bathroom. He walked three steps and fell hitting his back on the corner of the bed. She stated there are no bruises and no scrapes.

I was calm, and I do know that I have seen Al stand up and head for the bathroom and I will instantly ask him what he is doing. He says going to the bathroom. I ask him if he is supposed to be walking and then he says he forgot and sits back down. I always sigh a deep relief because when he stands it is only seconds and he is down. I think it is his Parkinson’s/Dementia causing him to think he can walk.

I hope he will be alright. My internal alarms are on alert basis now. Not only from the fall but it seems about every two weeks we head to the ER from more of those internal tremors in his heart and chest, and it has been two weeks. I am keeping my fingers crossed on this one.

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.

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