I Want, I Need
My first thoughts were sadness. He doesn’t want to see me? Don’t I do everything I can for him? Why doesn’t he want to come home?
The nurse said they spoiled him. Well, I spoil him also. The nurse said he was feeling better. The doctor said it will be up to me how well he continues to feel at home. Based on what he is allowed to do. The only time he was out of bed was for a shower. He even ate in bed.
I guess I am going to have to face this sooner. Talking to him about his activities. Maybe he is not crazy about me. After all I am the sister. They were nurses and strangers. Someone new.
You can tell that I am struggling on accepting this. I wish they would not have told me to be quite honest. I know that I don’t spend every minute with him. If I did, the house would not be cleaned, laundry and cooking set aside. Rhino would not be fed. Dishes would pile up.
I am getting too hung up on this crap and I want to stop feeling this way. I am having a talk with myself but when he gets here it will all come flooding back.
No matter how much I love him I must have space. I can’t sit in his room every minute he is a wake. I need to breathe. Is this wrong? He watches TV quite a bit by himself. I don’t really care for his shows and he doesn’t want to sit much out here in the living room.
I wonder if he is going to want to go to Day Program tomorrow or wait until Tuesday after the holiday.
Now my stomach is getting all messed up. Sometimes I hate myself for being such a mushy grown-up. I have to be me while I take care of him. I want to do a good job and I want him to know that I love him.
http://dailypost.wordpress.com, DP, Daily Prompt
Think of a topic or issue about which you’ve switched your opinion. Why the change?
Photographers, artists, poets: show us TRANSITION.
I used to be a woman who wanted to be noticed. I loved my antiques and sparkled when auctioneers would come up to talk to me about this or that. When people bid on things I was bidding on it made me feel worthy.
When I think back to that time I realize that I could have comments and looks galore but the real issue wasn’t being fixed. I surfaced through life. I wanted everyone that touched my life to like me.
When I see who I was I realize I was so insecure. It is embarrassing to me now a days for I am no longer like this.
Today I am more mellow. Maybe it is because I have grown up even more.
Maybe it is because I have realized that I am who I am. That trying to be like someone I wasn’t only brought failure to my life.
Today what is important is that I like myself. I am not overly confident, but I feel that I am doing what God gave me the talent to do. I am not a big antique business owner. I still love antiques and I would be happy to have a small business in my own home town.
I care for people who can’t care for themselves. I believe this is a gift from God. Today a person I saw mentioned that she could not work with so many mentally challenged people. I could understand this. I don’t think everyone can. I am not even sure if I can.
I can take care of elderly. I can care for my own brother who is mentally challenged, but to teach in a classroom, I am not sure if I would have that much patience. I think I enjoy the more one on one type of care.
I have realized that I do like being a homebody. I know without a doubt that God knows I am that type of person also or he would not have made it possible for me to get paid taking care of Al right here in our own home.
I am content. Content with smelling the flowers. To walk out to get the mail. To be in my house for a couple of days at a time without seeing a soul. I get lonely, sure, but when that happens I just write here at WP, or a friend will sense it and the phone rings at the exact moment.
I like cleaning the house. I enjoy making Al meals. I like getting him dressed, and helping him to eat. I like brushing his hair. I like taking lots of photographs of him. I like being sentimental and mushy. It is who I am. I am a caregiver who loves taking care of those who can’t take care of themselves and I am proud of myself for having this beautiful talent, a true gift from God.
It has been strange around here, Al fell last night. He fell between a base against the wall
and his recliner. I had put up so much of his collectibles on to shelves, but there were still
several items on the floor, all hiding right where he fell.
He was confused and he did not ring his bell to let me know he was getting up. He has a clock sitting on his table next to his bed, only inches from his face, but yet he got up, did not put his glasses on nor did he use his walker, and he said that he was going over to the opposite wall of his bed to see what time it is.
An open scratch on his behind, but other than that, nothing happened. I was able to help him get up, but my mind kept switching back to the coca cola glass bottles sitting inches away from where he landed on the floor. He landed on a musical reindeer, that stood about a foot tall and smashed it to pieces. The bottles were sitting directly beside the reindeer.
After I checked his body out for red marks, blood and bruises, and got him safely seated, I picked up one of the bottles and showed it to him, and I told him how lucky he was because the way he fell, he could have taken a bottle right through his eye.
He started to cry and said he does everything wrong, which makes me so angry, because I never tell him he is wrong. I do que him a lot, guide him in the right directions of different things, but do not ridicule him.
He was very quiet the rest of the night, as he usually is, when he falls. I believe he gets shaken up mentally when this happens. He remained quiet today also, he even without permission or asking me to help, leaned over and moved those items behind the recliner, which is what I have been trying to do for weeks. I told him that he should have at least let me know he was going to do it, or have me help, because leaning over forward, is asking for a fall. He cried again.
This afternoon the therapist came for her last visit, and also the nurse came. She has two more visits to go then all home health care is done. After being fairly quiet today, Al let loose when the two ladies were here.
His tremors were a wreck, flying all over and rapid movements. He burst into tears, and he told them how he was stupid and a retard, and I did not want him here, and he was a failure, and I wanted all of his stuff out of his room .
None of this is true. His being down on himself is his feelings alone, and no one else’s. I do not want his room empty, he is mad because we are rearranging things in his room, and Al doesn’t do well with change.
Both the nurse and therapist tried to calm him down, but he was tuning everyone out but himself. They tried some exercises to calm his tremors, but he wasn’t budging from his frame of mind.
Then I made the mistake or maybe a blessing in disguise. I stood up and said,I can’t take this anymore. It has got to stop, please stop. The tears, the arguing, the lack of ability to comprehend anymore what I am saying!! I just want to run and hide!!
What had I said? What had I done? I clamped my hand over my mouth, and sat back down. I had let my feelings out of their hiding place and the professionals had seen it. They had seen my frustrations and tiredness.
The nurse looked at me and said, I was wondering how long you were going to be able to pull this off. I would have been pulling my hair out a long time ago. We both so admire you for what you have been doing and for how long you have been doing it, but don’t you think it is time to actually consider placement for him, where he can get more therapy and be around other people?
Instead of waiting for my answer, Al is over on the couch screaming that I want the house for me alone, and that I don’t love him etc. This is what happens each time Al and I try to talk about maybe finding a better place for him. His guilt words being thrown at me like poison darts, always make me crawl back in my hole and keep me quiet.
Not this time, the nurse and the therapist took over the situation while I sat there in surface shock, and they started talking to him about how much happier he would be living in a home where there were nurses and staff to be with him when he fell, and the games that went on inside, and all the new friends. He began to cry, and then so did I, and then the ladies followed. Pretty quickly it turned into a pool of tears right on the carpet.
Al finally broke down and said he might be happy living in a rehab home, as the ladies called it. The therapist wrote an email to a facility here in our home town to try to get information on what had to be done in Al’s special circumstances.
By now, it has been two hours since they have left, and my heart is in my big toe. I am feeling the guilt no matter how I try to slap it away. I failed him, just like his dad did, no I didn’t, yes you did. I walked into his room just now and looked at him to see if he was alright, and instantly tried to imagine what it would be like to not have him living here, and I turned around and left.
I literally forced myself to think about how I could go back to work, and I could go pick up Al and take him to lunch, and he would actually be glad to see me and we would laugh and chat, bu then my thoughts would come instantly back to you failed him. No I didn’t.
I am not sure if I can do this, I don’t know if I can get rid of the guilt and let him go, even knowing he may be better off. Maybe this won’t work out anyways. I have tried to look into it before, and always got a no, or he is not on Medicaid, so no, but maybe it will work out………………
I need to, no, I have to keep looking straight at Al, and how many times has he fallen, and his confusion, and the EMS’s having to come pick him up off the floor, and his tears, and his sadness. I am thinking of me and not him.
Dad died, and that was it, over. I had no one asking me for permission to let it happen, it just happened without my consent. This to me is ten times worse, I am being asked.
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.
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.
Al refused to go to bed last night. He instead wanted to sit in his recliner with his glasses
off, and his open Bible on his lap. It was midnight then, and I don’t feel comfortable with me going to bed, at least knowing he is safely in bed.
I waited until about one am and then went in and asked him if we could please get into bed, that I was so tired. He still refused. I got his bed all ready for him and walked out here and turned all the lights off and sat here at the computer, playing a silly quiet game, and then within about a ten minute range, he did get into bed by himself, and turned his television on and his lights off.
Wow, I thought, was this to show me he was still independent or what? I had a half-smile on my face, as I shut the game off and went to my room. Prayers and God covered me up and after six hours of uninterrupted sleep, I awoke this morning, feeling brighter and refreshed.
I started my coffee being ever so much like a sneaky mouse as Al was still sleeping and I didn’t want to wake him. I went to my room again and placed the much-needed call to the local family doctor. I explained how yesterday went and taking him to the mental health hospital, and what the doctor did by coming in to actually talk to me and Al. I explained that I was in agreement with this doctor, that the goal was to have Al in comfort care from now on and as pain-free as possible. I even explained about Al’s thought process on dying and how he planned to make it happen.
I told the nurse all that was on my mind and I was firm about what I was saying, and she said, I will give the message to the doctor, what is your phone number, and he is not in today, so you will maybe hear from us late today or tomorrow. I said thank-you, have a great day, and we hung up. Now, we, Alvin and I are doing the waiting game of the phone to ring.
Al got up this morning, and came out to the kitchen and said his toes were hurting so bad. He asked me to look at them, and of course, I can see nothing with the naked eye. Then he smiled and said he had prayed the hardest he had ever prayed, and he got an answer. I said what was the answer. He stated that God told him this morning when he got up, that his wait was over. He could go to heaven now. I said, well we shall just have to wait and see won’t we bud, and he shook his head with a big grin.
The therapist came over later, and he told her all about his big answer and he was grinning from ear to ear. She started crying and I joined in, and Al asked us both, why are you crying, this is good news!
Now we are both waiting for the phone to ring, and to see if God is speaking to Al or if Al is wishing so hard.
I try to be nice and thoughtful in general, so I decided to take Al out to supper to the DQ. They have the Pumpkin Blizzards now, and I had a coupon plus they had a special going on for 2 double cheeseburgers for $4.00. I knew that he had not been out of the house for the weekend, plus he is still upset for the fact that as he says, he is not healed yet, so why is the shower girl and therapy people not wanting to keep coming here.
The office people from the Home Health Care told me this morning, that they were going to see what was going on, which to me, did not make me feel real secure, because if the office doesn’t know, then who does? All day the phone never rang, so I don’t know if anyone is coming back this week or not. I gave Al his shower this morning, but I should not have to do that part of his personal care, and I still don’t appreciate it hours later, that no one called me prior, and I just received a text message at 9am, saying the shower girl would not be back, and his shower was scheduled for 10:30. Great big notice you gave me, thank you very much!
So we went into the DQ, and he seemed happy about getting his blizzard and his food. The girl brought the food over to our table and we started to eat, and then he asks me if we can go to Wal-Mart to get him some slipper socks. I just had mentioned that this morning as I was putting clean clothes into his dresser drawers, that we should get some more now that the weather was turning colder. I told him that we could not go to Wal-Mart, as it was going to be dark in about forty-five minutes, and the deer are out now in early evening. I do not like to drive after dark, because I guess old age tends to make the eyesight worse, and I also did not want to get slammed by a deer.
He started to cry and when he gets upset his tremors pick up more speed, so I said how about we stop at the Dollar General store on the way home. I can run in and get them much faster than going to the big store. His reply was no. I said that I thought he wanted to get slipper socks and he stated yes he did, but he only wanted to get them from Wal-Mart.
Knowing him as well as I do, I knew he had a side purpose for wanting to go. He wanted to look at the toy section for more big cars. Now these cars are cool, I admit, but they also run from $15.00-$24.00. I have been working with him on a goal that he can only have these expensive cars once a month. When he didn’t want me to stop at the smaller store, I knew right a way it was the car section that was making him want to go to the larger store.
For the second time I explained quietly and nicely, that the answer was no. He began to raise his voice and cry harder, and the tremors were full force by now. I hate to say it folks, but I was beginning to get mad, not upset, mad.
If it is your young child throwing a fit, you can pick him up and remove him from the scene, but a big man, I can not do this. I told him to hush, to knock off the tears, that his game of throwing a fit was not going to work. I reminded him of where we were, and that people were staring at him, and reminded him that he didn’t like people to see his tremors so I was sure they did not want to hear him or see his tears.
He continued this bad behavior all through our meal. I snapped at him and told him that I was done being nice, that I was thinking of him when we decided to go out to eat, and I did not appreciate this bad treatment. So he stared at me with every bite he took. I was so angry at his fit, that I wanted to grab my supper and head for the safety of my car, but instead I snapped once more, and I picked up my ice water and told him if he did not cut the tears and zip his lips, I was going to have to splash him with my ice water, and then he says too loudly, that is abuse!
I got up and left my supper sit, and went to the car. I could see him from the front door as he sat there and ate, and he kept shaking his head back and forth, at the bad treatment he thought I was giving him. He is lucky, because what I wanted to do was pick him up and give him a spanking. Yep, I sure thought that. I don’t care how old he is, you don’t throw temper tantrums in public, when I am with you.
As I was sitting in the car watching him and waiting for him to finish, I looked up at the ceiling of my car and silently cried out, please someone help stop what is happening. I am tired, someone help me. If anyone listened nothing happened. He finished eating and put his jacket on, and came to the car and we came home. He is in his room sulking and crying and I am healing myself through blogging.
I want you all to know that I am ever so grateful for every time Al smiles or there are no tears, but I have been blown away this week, and through all of the research I have done, I see no answers, and so am turning to anyone who may have an inkling of an idea as to why things are as they are now.
Al has been having home health care for two weeks, so I am wondering if this is the reason things have changed. More interaction with someone besides his sister, the physical exercises?
Al’s shadow that follows him month after month and every moment, his tremors, have calmed down quite a bit. Yeah! Along with that a little more confusion, dementia, not understanding what I say at times also. Also, he shocked the crap out of me today, and this is why I stated in the beginning sentence, that I am thankful for everything positive that comes from Al, but what is this????
He woke up this morning and was so quiet, I did not even know he was awake. He came to the kitchen and fixed his breakfast with a little bounce to his attitude, and he tells me, I washed up and I shaved myself. I said huh? What? Really? Wow, that is great!!!!
Now I have not been able to get him to shave for months, and he has not been able to wash himself for months either. Just too weak and too many tremors. Again, tonight, I had a few glasses soaking, waiting for me to go do them. Al gets up to go use the bathroom. He grabs his walker, and with some work, he was able to stand up, and instead of heading to the bathroom, he went to the kitchen and washed and rinsed and put them out to dry, those glasses.
I am sitting there on the couch in shock, yep, me in shock. I am thinking what the ????? He has not done any dishes for so long, that I can’t remember when the last time was. I am not saying I didn’t appreciate the help, because I did, and I was loving it that he was wanting to and also able to stand there long enough to do it.
I heard some glasses hit the floor and counter tops, thank goodness all is plastic for him, but he did them?
So my question is, what is happening here? Has he fooled me these past years and he doesn’t have Parkinson’s? No, that isn’t it. He has been diagnosed by too many doctors, and they can not all be wrong. Is it the therapy boosting his mood? If so, then I do feel bad, because I do many things for him, but I am usually to pooped to go big time with entertainment anymore. I take him to Wal-Mart, or out to eat but no big partying anymore. LOL
What is this being caused from? How can he accuse me of not giving him his medications, to wondering when he is going to eat supper when he just got up from the supper table, to having such terrible tremors that he can not wash up or shave to this? Like I said, I am not complaining, and I am happy for this, but what is causing this turn around?