My Visit With Hospice Tonight
I had a meeting tonight as I said earlier. She met Albut spent more time talking to me. We didn’t…
I had a meeting tonight as I said earlier. She met Al but spent more time talking to me. We didn’t let on to Al that she was a Hospice person as he remembers Dad having them with him.
I always think I have things figured out, but am proven wrong time and time again. It is a touchy area we are in now. With Al coming home on a waiver, Hospice may not be able to come in between the waiver and Al.
If I allow Hospice in Al could lose his fifty hours. Instead of help coming each morning and helping him to get up, bathe and dress, Hospice would provide bathing twice a week and a nurse every few days.
There is much to check into for her. She first has to have the approval of the doctors she works for that Al would qualify, no matter how much our own doctor has written a prescription for it.
Al would not lose his day program, but which is more important? Him being bathed daily and helped with getting up and breakfast? Or, two baths a week and a guaranteed visit with a nurse?
She is supposed to let me know in a couple of days. I don’t know the answer. The lady said Al should be on palliative care which is agreed by all doctors. She also stated that taking Al to the ER for every internal fake heart attack may be a waste of time. She agrees with our own doctors. But other than that, I don’t know which way to go if she comes back Wednesday and says he was approved.
She did mention that she could check and see if hours could be divided between hospice and Al’s own hours since he has so many. What are your thoughts on this?
This morning I awoke to no snow. I saw blue skies with a touch of pink in the horizons. A good sign of a nice day. It is to be 45 degrees today, a real taste of Spring.
I already have had my shower and my first cup of coffee. I had to get up early today. In about an hour or so I have to go pick-up Al. The transportation driver had too many appointments so I said I would pick him up. He has an appointment with the neurologist.
He hasn’t seen Al for about six months. He is still Al’s doctor, but doesn’t stay actively involved any longer. All medications have been tried for Parkinson’s Disease. For some reason they never worked for Al. Instead he would have terrible tremors and drool like a kid in a candy store.
He has fought this disease with no help from PD drugs. He has remained on pain pills to try to lessen the symptoms. He and I are still waiting for word to see if he gets to come home and go to Day Program.
It would be so good for him to regularly associate with men and women his age and with disabilities like his. For this I would be grateful. The spirit of the mind plays a big part of an illness I believe. I received a call last evening stating the facility now has Nitrogen for Al. They will use this for pains for his Angina. This could save his life if he is actually having heart problems and help steady his body until he reaches the ER.
I didn’t tell Al that I plan to take him out to lunch after the appointment. I will let him choose where he goes but I bet he says his favorite little place. Today we shall take his wheelchair. With having to walk from the facility to the car and into the doctor’s office and back out and lunch, I don’t think he will make it.
I had questioned him yesterday when I saw him. I asked if he wanted to use his walker or wheelchair and he requested the wheelchair. He told me he can’t walk that far without accumulating more pain. I figured this but I wanted him to have the choice to choose.
So today hopefully it will be a nice day for him and I. Sun, a little warmer a doctor who makes a lot of jokes during our visits and lunch out. Al will probably be worn out and take a nice nap when I return him.
” Yes” he replied. I questioned him about the pains and he pointed to where they hurt. He said it felt like something was heavy but then they went a way. I asked,” How many times do you think you have had them in the past two days and have you had any pains today?”
” I think about two dozen and no, I don’t have any pains today.”
” Did you say two dozen?”
“Yes, but they don’t last long” he said.
I qued him again on how he has to ring that nurse bell when he is having any sort of pain. I don’t think he remembers. After our lunch he went on his outing with the lady. I told her what I had learned and said, “If he complains to you at all, please take him to the ER and call me.” She looked at me with big eyes.
I said, ” I am not going to ruin his outing by what ifs. If he has pain take him to the ER and call me. He says he hasn’t had any pain today so I am going to let him go.”
She looked at me but went ahead and took him. In my opinion she is trained to handle all emergencies. Why should he sit at the facility and just wait.
Al has had a heart attack and has blockages today that aren’t bad. He also has angina. We just went through this about a year ago. I get concerned for two reasons. It has been five years since his heart attack. Repairs on a heart last about five years. Al doesn’t use the call bell often because he forgets.
Something could happen before he realizes or understands to get the call light. I have alerted the nurse to my concerns. They are now on guard to question him several times each day for a while. If there is concerns they are to send him straight to the ER and call me.
I have done the best I can with what knowledge I have. In the back of my mind I am hoping and praying it is not the new Pain Patch. It is super strong and one of the many side-effects is messing with the heart. I don’t want him to lose the patch as it has taken a lot of his pain a way. He can still walk for several feet. He uses his wheelchair part way down the hall. When he gets to the nurses’ station, he switches his wheel chair to the walker and then walks the other half down to the dining room.
Now I come to you because in numbers prayer is strong. Please pray for Al. I don’t know exactly which or what to pray for, so I am praying for Al to remain safe.
Dig through your couch cushions, your purse, or the floor of your car and look at the year printed on the first coin you find. What were you doing that year?
1980 penny; this is what I first found. What a great year, yeah right. Swimming in sweat. Overloaded belly. Vomiting every night for the first four months. Yes, I was the oddball of the pack. Instead of reaching for the saltine crackers before rising out of bed. I was on delay switch until evening. That is when my night sickness arrived. It was timely and on schedule every night. I swear you could set your watch to it.
This was a child that was conceived by error. Not my error, the little flexible thing called an IUD. The doctors raved about it back in the day. Oh this is a wonderful gadget. You will never have to worry about taking a pill daily. You will never know it is there.
Really? I don’t think so. Each month before the big moment happened I knew I had the foreign object inside of me. Terrible cramps appeared out of nowhere. My clothes suddenly became an issue with cleanliness. I began to hide safely in my four walls waiting for the coast to clear.
One night I had the worst cramps ever. I thought I was going to die. My husband looked at me like I was nuts when he walked in the room and saw me doubled over like a beach ball. After his sudden shock wore off he rushed me to the ER.
This is where the big moment had happened. I wasn’t even aware that visitors had come un-announced. They just decided to have a party all on their own and the after effects of their play time produced a life within me.
The doctor quickly removed that little critter claiming it could result in a loss of life. This was the culprit of the bad cramps and the terrible pain on this eve. It was removed and then I saw my husband looking at me.
He had the biggest shit eating grin plastered from ear to ear. He had heard. Yep, the doc wasted no time in letting him in on the news of we were expecting. While he was thrilled I was not quite as happy.
Not that I didn’t want the stork to stop by our house, but because back then to have a baby after a certain age was not nearly as safe. I fretted and I worried. The bright glow that most women carry was hiding for me.
Except for the fact of being a worry wart, the nine months went well after we got past the night sickness. You know everyone says that we go through mountains and valleys. I had been on the up and suddenly I was headed down to the bottom.
Sugars were rising. They were spilling into my system and reaching the un born child. All of a sudden time was of the essence. The doctor set a date that I would have this child. He even added that if I didn’t deliver the cute bundle he and possibly I would die.
I went into the hospital at the scheduled date big as a barrel. The doctor tried to break my water but it was a stubborn process. With much effort he produced a positive effect and then told me I had five hours to show what I could do.
Time ticked by slowly as pain increased. I was told this was called false labor as the dilating segment was not happening. I went through hard labor, that was said to be non-productive labor for four and one half hours.
The doctor came in and shook his head. I felt so guilty. Like I was disobeying a parent. I heard his words through my screams that they needed to schedule a C-section. Oh no I thought. I have heard about those. They cut you from top to bottom. Push harder Terry, don’t let them get the knife.
I concentrated on that spot on the ceiling and worked like hell to make this all come out in the end. Time still ticked and nothing. I heard the doctor yell at the nurse,” Let’s get her into the operating room stat. The sugars are spilling heavily. We are going to lose them.”
The senior nurse went to the end of my bed and started to un lock the wheels when out of no where she yelled,”Doctor come quick!” He went to her side immediately and looked in the direction she was and wouldn’t you know it? The baby was as scared of the knife as I was.
There was the darkest head of hair ever. The doctor worked in triple time and within a few moments our son was born. I had two minutes to spare. I , we, all of us had made this come together like a good ball game, Home Run!
Today was the day that Al and I went back to the doctor for a recheck on his new medications he had been put on last Monday, and to discuss the numerous tests that had been done on him in the ER on Friday and last weeks labs that had been drawn.
We walked in and waited for a few moments and then Al’s name was called. He was weighed and now he had lost the four pounds he had gained and even lost two more pounds, making this the lowest he has ever weighed.
We then went to our familiar little room where the doctor comes to pay his visit and give you his infinite wisdom. Al’s vitals were checked and then the doc came in and sat down and was all smiley.
I had a list of things that the home health care nurse had given me to ask, so I started the conversation first. The doc didn’t really respond too much, did a lot of smiling, made one adjustment from what the nurse had stated. He also said that Al would be checked for cancer the first week of December on his enlarged prostate.
Then the room became silent. It was like when you are in a group of strangers, and all the surface talk has been played out, then what, silence, until someone speaks. This was the way it was here also, then the doctor spoke.
He said that he was very shocked that the test results did not show that Al suffered from something else besides Parkinson’s Disease. He said that he was so sure that Al could not be in this much pain from this illness, but he was wrong. All the labs came back negative from every kind of bug or arthritis or anything. The only thing that proved him wrong for sure besides the tests, was the brain scan that the hospital had shown.
Al’s brain is consumed with Parkinson’s, and yes he is suffering. The wiring in his brain is being cut off from the death of cells. He said that whatever we wanted to do , it was fine with him anymore, just tell him what would make us happy.
I looked at him and said nothing. Al said what did he say?, and I said, the doctor wants you to be happy. Al said, oh ok. For now we have postponed the Pain Clinic appointment, and are going to continue with his new medications, since it has taken away some of the tears and talks of death. Other than that, there is nothing.
As we walked out, my head was low just like Al always carries his. Al didn’t get anything the doctor said, and I understood too much.
I am never going to plan on nothing happening anymore, even if we do not have appointments or any health care providers coming in. Never again, until taking care of Al is completely done.
Today, the shower gal came and gave him his shower. He cried the whole time and his usual wanting to die was the subject. There was nothing she could do to turn himself away from this conversation. His brain was in cement and could not be broken.
The other day when we had the chaotic episode at Wal-Mart, he did buy one of his more expensive cars, and has been bugging me all weekend that he wants another one. I have said no, only once a month for the big cars, only the tiny cars in between, and I am not even sure how I would take him to get one either, as I don’t want to have to take him to any store for a while, or at least until I forget about getting pinned in in the parking lot.
This is Al’s room. It is filled wall to wall and floor to floor. Every nook and corner is taken. Things are hiding behind his recliner, behind his dresser and tables and his closet is totally filled, with little space for his clothes. Coca cola is even over flowing into his bathroom on the walls and corners. He has one shelf on another wall I didn’t get a photo of that he has filled to the max with now his car collection.
Al has no thinking process of these items. All he knows is he likes them and wants everyone that is sold. Pretty soon, I am going to have to move outside!
Today, he had the appointment with the doctor, and I needed some batteries for his flashlight. Why, I don’t know, but he has to have the flashlight at nights. It is a tiny magnum flashlight that takes four AAA batteries, and I only had one. We stopped at the Dollar General store and then he did not want to go in. Darn it! I locked the doors and raced as fast as this old body could go, in, get the batteries, pay, and out. Gosh, my hair now looks like I ran a marathon, and my cheeks are rosy in color. Man, I am out of shape!
Then we went close by and grabbed a sandwich and of course a diet coke. This time he went in, but not before falling against the car once, and then when we were inside, he fell into the counter where you order. People may have thought that I was the town drunk’s wife! Next we stopped at the pharmacy and got yet another prescription called in for Al.
All this time, I had it planned to the letter T. It was a full circle. Al only had to get out of the car twice, once to eat, and once to go inside to the doctor’s office. I raced in and got the medications, because I knew they were ready, and locked the car and took my keys. I think I was gone about five minutes.
Then the doctor. Oh wow, what a trip this was! I had told Al he was having lab work done, but when we were at the little receptionist window, she told me the doctor wanted to see him first, and I had previously told him we would not be seeing the doctor today, just labs.
This confused Al way too much. He started crying and when we were called back to the doctor’s rooms he was still crying. He reached out to the doctor and took a hold of his doctor jacket and said please help me. I don’t want to live anymore. God doesn’t care about me because he won’t let me die, and no one else cares either.
The doctor is looking at Al and then at me and back at Al. I said now you see what I deal with at home 24/7. We do have good days, but what you see here, are the normal days. The doctor made a big boo-boo. He told Al that PD does not cause this much pain and he sort of chuckled a little. This ripped Al apart, because now to him, his doctor didn’t believe him either. I always believe him, I am not saying that, it is just I can not do anything to help him anymore as a sister, except to guide him and love him.
Al went on a crying binge. He took his glasses off and wailed nice and loud and begged for death. The doctor continues talking and says that he believes that Al has some kind of auto-immune problem on top of his PD, maybe, and he just wanted to see him first, before he went forth with the labs.
I am not sure what he thought he was going to gain by seeing him, but he did get an eyeful today. He wrote out two new prescriptions for Al. Two things Al has never taken before for pain, and then told him to go get the lab work done.
Al and I leave that area and go to labs and the lab girl comes and gets his blood. Then Al gets his coat on with great slowness and with my help, and we get out to the lobby, and I set a new appointment for next week for a recheck on these new medications he is starting today, and the lab lady realizes she had two papers for blood work,instead of one, and she needed to poke him again.
Call me what you want, but I threw a tiny fit. I said this is great, he is crying his eyes out, is in too much pain, and now you want to give him another needle. She went over to Al and explained her error, and he just got up and walked with her. I don’t know where his mind was, but he didn’t seem to mind another stab.
After this ordeal, we had to go back to the pharmacy to get the new prescriptions filled and I promised Al he could get a diet cherry coke back at the fountain, since he could not stay in the car this time. There could be some waiting since it was not a refill. He was all for the coke so he didn’t fight it.
We got them in a very prompt manner, because this pharmacy is just the best all around in town, and then we came home. I got out and got all the goodies out of the back seat, and as I always do, I hurry to the house and unlock the door, and drop the stash, then race back to the car to help Al in, but this time was different.
I go back out the door and Al is pointing to his hand with his other hand. He is just standing there not trying to walk. I look really close at the situation to see what is going on, and Al’s thumb is in the door. He had shut the door with his thumb in it.
I ran faster than a bolt of lightning, down the ramp to the car, and jerked that door open faster than you can say Monkey’s Ass, and looked at his thumb. Al is not crying now, I think he is in shock. Blood is starting to drip, from where it got a piece of his skin, and the nail it blue already.
I am thinking what do I do, what do I do. Is this considered and ER trip? I ask Al does it hurt, and I am sure if Al could get by with it, he would have slapped me silly for that question. I tell him we are going in the house so I can clean it and examine it, and we need to walk as fast as we can, but that didn’t work. Al’s walking was no faster than any other time.
We got in the house and went straight to the kitchen and I ran cold water over it for a few minutes, then I examined it. It wiggled, it was lightly bleeding, and the thumbnail was becoming deeper blue. Since the bleeding had almost stopped, I wrapped it in a band-aid, and had him take one of his new pills for pain.
He is now laying down but right before he drifted off, I took another look at the band-aid. I did see blood but none seeping through. I asked him how it felt and he said fine. Wow, if that would have been my thumb, fine is not the word you would have heard me say, but let’s let him rest. I get no nap or rest today, as it is almost 5:30pm, and he will be awake in forty-five minutes for his supper, but yet that is enough time for a quick cat nap, so talk to you all later tonight.