A Helping Hand Is What I Need



Today, flew by and now I am dead tired. I can barely keep my eyes open, and it is not even 9pm yet, and Al will be up until 2 or 3am. It did not even start off good today, in fact, I was awakened by the crash of thunder.


It was not the usual thunder you would think of, it was the thunder that came beyond where I was, in another room, at the back of the house, but it rattled the floors, and I heard the scream of help me!


I jumped out of bed and ran back to Al’s room, there he lay on the floor, and his neck was hung up on the commode. He had gotten up and tried to go to the bathroom, but did not make it.


I got him up and checked him out. He had a red gash on his neck and a gash on his leg, but other than that, I didn’t see much else, except the fear in his eyes, and the tears streaming from his fall.


He and I put a clean brief on him, and then put some warm, fuzzy sleeper pants on him  and he was talking by then, so with help from me, we got to the kitchen chair, and I helped him to sit, and then I put his breakfast together and set it in front of him.


He began to eat, so I started the coffee pot, and then went to his bedroom and changed his bedding sheets and emptied his commode, and I heard this unfamiliar sound. I stopped and became very quiet, trying to guess what it was, and I then realized it was Al.


I raced back to the kitchen and he was drinking his orange juice, but he was gurgling and gagging and then started to choke. My nursing took over my body and I got him back to normal, and he tried to pick up his new two-handled cup to take another drink, but he could not get it to his lips, so he bent his head to the cup and then struggled to get anything up in the straw.


I thought, blood pressure, Terry, check his blood pressure. I always have it at arms reach so I took his BP, and it was too dang high, 180/108. I freaked inside, not wanting to scare him, so I asked him if he would let me try it again on the other arm, and the reading was the same.


I immediately called the Home Health Care, but they refused to come out, saying he needed an ambulance and a hospital worse than them. I hung up and called 911, then and within 15 minutes, I heard the sirens. Just as they showed up, so did the shower girl.


The EMS did not hesitate, they took his BP and it was as mine was, so with the help of all four of us, we got him on the stretcher, and they zoomed off to the hospital. I got all Al’s medications around and got myself presentable for public viewing, told the shower girl I am sorry, I will have to give Al his shower today, and off I went.


I arrived at the hospital just as the EMS was transporting him from the back of the vehicle into the hospital. I had to wait a few minutes for them to get him settled, but then did go back, and answered plenty of questions.


They ran all sorts of tests, to see if he had another heart attack, but his heart had not changed from the last view they had, check. They ran a test to see if he had another seizure, and this turned out the same damage view as prior records, check. They saw that his tummy was puffy and a little swelling on the ankles, but the lung x-ray came back alright, check.


We were there almost six hours and Al had everything ran that a local hospital can do. They tried to put a catheter in him and it would not go, so they tried a different type and it would not go. They said his prostate gland is too big for any catheter, so although, the family doctor runs a cancer check on his enlarged prostate four times a year, I think he now needs to run a test on the size of this gland. I will be discussing this on Al’s appointment this coming Monday.


I watched the monitor a lot of the time while we sat and I stressed, and Al dozed off and on or he watched or listened to the television. I was amazed at how the heart reacts to Al’s tremors. It causes the monitor to do funny things, which worried me, but the hospital staff was not too concerned. I guess when I think about it, the heart is a muscle also, so the tremors are having a hay day with his whole body. In the end, the BP was 117/61, which is where they like it for a heart patient, and all tests showed no further damage than the last testings.


They told me that I either needed to get more help, or consider placement. I thanked them for all they did and I drove Al home. I called the home health care, and the nurse is back on the schedule again starting tomorrow morning.


All this happened for no other reason that tests showed, but for Parkinson’s Disease. The doctor said Al is just too weak and unstable. I am not sure what the doctor meant, and I didn’t ask, because sometimes my mouth will not open, as I am afraid to hear the truth, but he said that he talked for quite a while to our family doctor, and told him, that the hospital wanted to admit Al, but the family doctor said we are in prolonged care. I don’t know what that means, but here we are, home.


Al knew that he was to get a shower this morning, and did not. What did I get to do as soon as I walked into the front door? Yep, you got it, a shower, and a shave, and a trim of his mustache. After that, I started a load of his laundry, and then came out here to sit just for a moment, and bam!, he was out here. I looked at the clock and it was 6pm.


Darn it! I am so tired and worn out from the day, and I sat at the hospital all day and had to give a shower as soon as my feet  hit our own floors, and now he is ready for his supper. I can try to explain how pooped I am and watch him cry because he doesn’t understand why he can’t eat, because it is six, or I can get off of my rear end and go fix supper, and keep him content, so this is what I did.


Now, I sit here with bunches of emails and notifications waiting for me to chat, but instead, I am sitting here getting rid of my stress by writing to you instead. I promise I will look at everyone’s tomorrow, if I don’t get to it tonight.


I need a caregiver for the first two hours of each day, wish me luck.




I Am Going To Kill Myself



Today, I got a few hours of respite with one of Al’s favorite caregivers being here. I wanted to visit my son whom I have not seen for months. Al had woke up not in a good mood and was full of pain.

He ate his breakfast and took all of his medications, plus his pain pills. He did not stay out here in the living room like he normally does, but went back to his room to be alone. He has a new thing he has been doing for about a week. He takes his glasses off a lot of the time. So there he sat in his recliner with his glasses off and his bible on his lap opened. Although it is big print, I know that he could not read it with no glasses on. I left him be and continued to get ready to leave.

The caregiver arrived, and I left. I had a nice visit with my son and his g/f, and my granddaughter, then I left and came home. I was gone about four hours. When I walked into the front door, the caregiver did not look her normal cheery self, and of course I asked what was wrong.

She filled me in on the morning by saying Al was mean and begging to die. Now if anyone in the world can make Al smile it is this caregiver, but it did not happen today. While she was here one of the newer therapists came today, and Al refused to do the exercises, saying he was in too much pain. I guess she tried but with no success.

Al told the therapist and the caregiver that he wanted to die. He wanted to find pills to end his life NOW! He explained to them that he wanted to be like a monitor that shows the flat line and have the same noise because this would mean he was dead.

He refused his noon meal and also told me when I got here that he was not going to eat supper, because he knew that if he did not eat, he would die. I was flabbergasted at this information they were feeding me, and for him to be this way in front of his favorite caregiver told me he just isn’t here with me.

Al talks about dying all the time, but I have never heard him making plans on how to do it. Al is only mildly mentally handicapped, and there are areas still in his brain that are very intelligent, but he can’t make good choices and doesn’t know why he acts the way he does.

I was very concerned at this point for Al’s life, and I was having selfish thoughts too. My thoughts were screaming to Al. I have taken care of you all these years, and I will be damned if you are going to die here in our home from something you have done to yourself. This is what I was thinking and screaming inside.

I went to the phone and called the favorite therapist and she of course could not fix it, but she suggested I take Al to the mental health hospital, because of being suicidal. I thought that was a good idea, so without telling Al where we were going, I just told him to get his shoes on and his jacket, that we were leaving.

He knew where we were when we got there and he told me that I wanted to commit him for life, which is not at all true, but I was not going to argue for the millionth time right there in the parking lot.

We got inside and I announced who I was and why we were there. In minutes some guy came out and got name and birth date and went and pulled records from the past. He came back and told me that he was going to take Al back and talk to him alone and then come get me, and I said no you are not! He says yes I am, and I said I will turn you in if you refuse me to be there also. I am his guardian and conservator. He is mildly challenged, and I want to be there to listen and help fill in the blanks. Finally, he saw that he was not going to win, and we all went back.

He tried talking to Al and as soon as Al said he wanted to die,  the gentleman went straight from Al to me for the complete story. After filling in all the blanks on the pages, the man had tears in his eyes as he felt the pain and anguish Al was going through. He told me he was going to go call the house doctor and see what he had to say about admitting Al for suicide watch.

In about three minutes he came back and said in all the years I have worked here, the doctor has never come in from a call, but he wants to talk to you in person, so he will be here in about 15 minutes.

Exact timing later, the doctor came in and looked at Al and listened to his talk of death and how bad he wanted to die, and he said to me, this brother of yours is in so much pain from the Parkinson’s Disease, he feels he has no reason to live, and this is why he wants to die.

We can not help him here, because this is not a crazy man type of thing. This is a man who is suffering from an illness and needs a higher level of medications. He suggested we go back to the family doctor and demand better medications, and for me to make sure to tell the family doctor that I have had experience with lifeless people.

He continued to say that this was inhumane treatment, and Al deserved to be pain-free while being in this fifth and final stage. If the doctor refused even with my court stamped papers stating my wants for Al, I could go to a pain management, and maybe get help there, or as a last resort place Al in a nursing home where he would get the proper medications, which would make Al quit talking about drying and plotting on how to make it happen.

So tomorrow I am going to call the family doctor and try to win this. Call me selfish, but if Al is going to die, I would rather have him die here at home surrounded by his coca cola, his vintage cars and me, not a cold nursing home bed.

The nursing home idea is not out of my head, but it is a last resort. The doctor said he thought I could take care of him if I had help, and I was given a company that would come here, which I liked. I would have help with Al and also get respite for me. The doctor said one final thing before he came over and gave me a hug. He said you love your brother, I can see this so clearly, and I wish there were more family members out there like you, but the thing now is to get Al out of palliative care and into comfort care. Let him live the rest of his days in a peace he has not felt for a long time. With this he left the room, and the gentleman that had been helping us from the beginning, gave me a hug and tears were still flowing from his eyes.

Where Is The Switch?

The Two Doctors

The Two Doctors (Photo credit: Wikipedia)

The easy thing to do is just switch my brain off, and call it a day. Can I do this realistically? No, it still works even though I don’t want it to at times.

I take Al to the doctor today, and all in all it was a good visit. Al only cried the whole time, but no fit throwing or cursing today. He has gained one pound, but I take into consideration, he has had breakfast, but I don’t care if he gains a pound or two, because he is ill, so let’s keep the weight on!

Al has a few doctors that specialize in each of his illnesses. I can deal with this, pretty simple, just carry my schedule book with me whenever it concerns him.

Here lies the issue, the problem that I am having, in knowing which way to turn. Two of his doctors say there is nothing medically to be done to help Al any longer, so they are now considered our PRN  specialist doctors. One of these two doctors, tells us on our last visit, that we need to look at keeping Al as pain-free and comfortable from now on. Also stated, was to take him off some of the medications, and bring him down to just the heart and blood pressure and his one diabetic med.

His family ,primary care doctor, which I took him to today, also went over his list of medications and said he agreed, that the ones that remain, are the ones needed to help him stay alive. He also gives Al a prescription strength pain reliever to start. This is good, I think. Al has much pain 85% of the time, and it is only a once a day pain pill.

Now the doctor sees Alvin crying, and he keeps his eyes on Al as he is talking to me. He is just observing, I am sure, Al’s tremors, and his whole attitude in general. We talk some, using hand talk and shortened words, since we are talking in front of Al, about his Parkinson’s and he comments to me, that Al is a long ways from nearing the end. Wonderful,yes, no, not wonderful, what? what about the other two doctors opinions?, what about the way Al feels about his own life?

I don’t know how to feel, and this makes me feel awkward and uncomfortable. I don’t want to lose my brother. This is a good thing. I don’t want my brother to be in pain and cry every single day. This is a good thing, I think. There is no medication to help him anymore. I don’t want to see him suffer for years, and on the other hand, Al is so sure he is at his nearing days, and I must explain here because of previous comments made. I am speaking for my brother about his time ending. These are not my thoughts, but his. I am not God, nor do I profess to know our time to leave this earth. Alright, I cleared myself on that one. Of course, I do not want Al to suffer for years to come only to have him here with me. What kind of animal would I be to be that selfish.

So my feelings are twisted right now. Do I play and pretend with Al that he believes his time may be coming close, because he believes this is what God tells him?

Do I listen to the two specialists that believe there in nothing to do anymore medically, and we give Al as much comfort as possible?

Or do I tell Al that he needs to quit thinking like this, and this may not be God speaking to him. This could just be turmoil that is going on inside of his head due to his own fears. Do I tell him to stop, that we are going to stop this talk, and let’s find all the pretty things in life to occupy our minds.

I want to be there for Al. I want to believe the doctors, but which role do I  play and at which times?

Hang on, someone turn the lights on, because I can’t find the switch to my brain, so I can shut if off!