Me and My Camera

Today I went unannounced to see Al. When I first saw Al he looked like he was getting ready to cry. He perked up a little when he saw me. I took him some more treats and picked up the weapons.

I didn’t order lunch today after it was served to me cold the day before. I have to pay $3.50 for a guest tray and I would rather not eat then to pay and eat cold food. Al had lasagna and other things. The kitchen had not cut up his main dish and he kept trying and trying to do it himself. He did a couple of bites and then just started tremoring like crazy and crying.

He looked at me with those puppy dog eyes and cried saying, “I can’t do it. I really tried.” I understood but didn’t want to butt in until he gave me the signal. A couple of nurses walked by and saw him crying but why should they stop and ask anything, I was there. After they walked back by one did stop and ask and I said, ” He can’t cut this food. His hands are too weak. The kitchen should have cut it up or something.”

The nurse looked around like she was seeking help but no angels appeared. She gave a sigh and cut his food. While he was eating I took his goodies down to his room. I had taken my camera in with me today just in case.

When I walked into his room I was a little surprised at what I saw.

Pee stains

His bedspread and dirty clothing

His pillow

Weapon number one

Weapon number two

I took the weapons and put them in the sack I had taken Al’s goodies out of. I kept them in the sack so no one would try to set off alarms and call the police for attacker being in the building. This way they were safe and I wasn’t frisked.

I went back to where Al sat and stayed with him through his meal. I stopped a Nurse once again. I asked very nicely, “Sometime before I leave I would really appreciate it if someone would please change Al’s bedding.”

She said, “He had a shower yesterday. The beds are changed then.”

“I have the proof here on my camera that they are dirty. Shall I pull the camera out so you can see it for yourself?”

“No.”

She turned around and walked off. Soon one of the department heads flew by me. Was there a fire? What the +++ is going on? Should I get Al and run out the front door?

In about ten minutes she came back with an aide. She came up to me and stopped. Taking a breath and pushing her hair out of her eyes the department head said, “His bed is changed. We don’t usually do this except on bath and shower day.”

“Well at my house we do it different. If it gets dirty, we change it, even if it is seven days a week or more than once a day. If I wouldn’t want to lay in dirt, then I have to assume Al doesn’t either.”

She smiled at me and left. Her aid or helper smiled at me and she left. I helped Al finish his dessert and then took him back to his room. Bed was all nice and neat. I helped Al to the potty and he was soaked. Brief and outer pants. Just then the driver who takes Al to his outings on the two days a week walked in.

I explained that he had soaked through and we had to change his brief and outer pants. I said he should be fine now for a few hours. I added, “Would you like to take an extra brief with you in case he would have an accident?”

She looked at me and said, ” I don’t change briefs.”

Well good luck my dear brother. I did manage to get  a clean bed for you. You are on your own now. Please stay dry until you return.

Related articles

• What did you do all day? (blueeyedhippiegirl.wordpress.com)
• A doula for the doula. (doulamillie.wordpress.com)
• From Hospital To Home (Making Moms Out of Wolves!) (momaconnects.wordpress.com)
• Tennessee law requires little to operate home for the aged (timesfreepress.com)
• A day in the life of a Scientist/Mother (#SciMom) (mommacommaphd.wordpress.com)
• The Curious Case Of Mr Smith (ashfyrdplace.wordpress.com)
• See That Your In Home Nurse Meets The Following Criteria Before You Hire Their Service (whitsymsnursing.wordpress.com)

Where Are The Tremors? I Heard They Leave In The Final Stage

Hi to all of my blogger friends! I had a couple of good friends ask where I was. I know I post too much, but you are the ones I talk to in my life, so I can not help it. Yesterday, I was barely on the internet, just popping in to see if there were any fires or emergencies. LOL.

I was down, and let me tell you, I hate it when I get down, and most of the time, I don’t even know what took me down in the beginning. I was fine when I woke up, and I think it may have started when I had to strip Al’s bed down to the mattress, as he had soaked his bed good. He had done this the night before also, and even today, during his nap, he wet, but I didn’t have to strip the whole bed, just had to make surface changes.

Yesterday, before I could start drinking my coffee, I had the complete bed change, Al to wash up and shave, and then fix him breakfast, and then drink my coffee. I spent the day floating from then on, but not really having my mind anywhere particular.

I switched out Al and my summer clothing and replaced with all fall and winter. I could see that I am going to have to purchase some smaller pants for Al,  just by comparing him to his sweats, there is much difference in sizes. I did laundry, and then felt so pooped half way through the day, that I ended up taking a nap.

I should not be feeling this way. I am middle-aged but I am not ready for the rocker on the porch thing, so I don’t know why I am so darn tired all the time.

This Parkinson’s is a tricky business. While Al can go from sad to happy in ten seconds, his tremors have slowed down immensely for several days. I read on a couple of web sites, that the final stage can bring a slowness in tremors, so while they are slowing, I am having to face the fact, that he is definitely becoming incontinent permanently. He is wet all through sleeping times, and he does not soak through the day usually, but he does wet, so while some things are slowing, others are speeding up.

Last evening, I was still down, but a very good friend of mine pushed me back to normal by talking to me through emails for a couple of hours. She is just what I needed, plenty of laughter, and complaining about our days, just girl stuff, you know??

I woke up still in a good mood today, so I am glad the sadness has left for today also. I changed his sheets and bathed him, got his breakfast, and then sat here at the computer with my hot coffee and wrote a writing exercise, and did a couple of quotes, and even played a game, that I love on FB.

Al has continued his calm tremors today and I have seen plenty of smiles, and a couple of laughs. He even refused his noon pain medications, but by supper he was freezing a little and staggering, so I gave him two of his pain meds.

I fixed lasagna for supper with biscuits and corn, and he acted like he had not eaten for years. He gobbled it up in no time at all. He is sitting on the couch reading the paper, and I don’t even hear the paper rattling like I usually do from his tremors.

All in all it has been a good day today. I can’t figure out the PD, but I am thankful for a good day and laughter from Al.

She Says, He Cries, I Think

I hear my voice saying calmly, it is alright, we will blame it on the dementia. You didn’t mean to, it is not your fault, but on the inside I am yelling at this PD. Two good days in a row, hardly any tremors, and this is including the day today.

The therapist comes and gives Al exercises to be able to strengthen his arms, so the goal of lifting the full glass up to his lips, instead of lowering his head to the glass, might be accomplished. While the therapist was here, she was telling me that Al is improving, that he has made progress in this one week they have been here.

Inside of me, I am saying show me where? Show me where the tremors are laid back for days. Show me where he did quit soaking the bed? Tell me that now I will not have to cut food up nor feed him. Tell me he can walk better than yesterday.

As the therapist was using plastic, empty cones, laying them on the floor and asking Al to pick them up, which he did, she looks at me with a big smile, and says see? he can do it. I said, yes, he can, the glass is empty. She looked at me and said nothing.

The therapist also said that he had a low-grade fever, and I have  heard Al complain the past two days of having a dry mouth, even though he is a huge drinker of water. I told the nurse who came this afternoon what the therapist had said, so she listened to his lungs and took his temperature. Now the lungs are clear, and the temperature is only 97. I see nothing wrong, she says. I mentioned that all morning Al’s voice was raspy and I could hear something rattling when he talked. She advised me to keep an eye on it, but she thought nothing was wrong.

My coffee pot went on the blink this morning right after making me my coffee, so I have to consider this an emergency, and with the therapist suggesting to buy Al a two-handled cup, I said we will get it today, because I must have my coffee.

We go to Wal-Mart and I buy us some lunch at the inside restaurant, Sub-Way, then after done, we go to the grocery aisles and get him some orange juice for breakfast, since he was out. Next, we went to the small appliance department  and I saw the coffee maker that I had at home, but guess what, the only coffee makers they had on the shelves were the expensive ones. I glanced around to see if there were any employees around, and as usual, there was not.

I asked Al if he would like to go over to the toy aisle and pick out a cheap car, that cheap is what he could afford this week after buying an expensive car last week. I asked him if he remembered how to get to that department, and he nodded yes to both questions.

He left on his scooter and I grabbed the first employee walking by, and I guess I was not very nice, because I asked her why is it every time I come here to get something much-needed, all the shelves are empty except the expensive ones. I reminded her that with the economy being so bad, they needed to keep the shelves stocked with the common priced ones. She didn’t deserve it, and why I acted that way, I am not sure, but she did go back to the back and look but came out empty-handed.

I did not want to tackle getting Al in and out of the car more than I had to, so I picked out one of the brands I like that was common priced, but it had no timer on it, so now I have to start it in the morning instead of waking up to heavenly coffee. Oh well, it won’t kill me, but it was a nice luxury for me.

I then went over to where Al was and he had a pile of cheap cars in his cart. I think my eyes bugged out, there were so many. I explained that we could not have more than one today, and he said he didn’t know that, that he had heard me say cheap, which each one was $3.59, not bad price, but over $.99, but when you add up several, it cost a lot! He started crying saying he had messed up again,and that his brain is so confused. I told him to pick out the coolest one of all, and he could have that one, but needed to put the rest back, which he did, with no fuss. He kept telling me he just didn’t understand, and I believe him, other wise he would have been throwing a fit to keep all of them, but he did not do that.

So tonight during supper, we were both eating and he tells me the bucket is missing. I ask him what bucket and he says the grey bucket. My mind is going to the movie I just watched yesterday, the Bucket List, and he says it is missing. I question him some more, and then I got it. He was saying to me that the bucket for the commode was missing.

All of a sudden I put my fork down, as I was no longer hungry, because my mind was picturing the mess I was in for when I went in to his bedroom. I went in there and saw no urine on the floor and sighed a sigh of relief. I lifted up the lid, and the lid was on the bucket, but the lid was full of pee. He had peed on the lid thinking it was the bucket.

When he finished his last bite, I told him the bucket was there, and he argued no it was not, and so I took him in and showed him the urine on the lid, and he said that I had placed the bucket back for him,and asked who’s pee was that. I told him that the lid was on top of the bucket and he had accidentally peed on the lid instead of taking the lid off peeing in the bucket. He cried again, and asked me what is wrong with his brain, that it is all messed up. I told him not to worry, that it was an accident, and I would clean it up. He walked out of his room crying and asking himself why he can’t remember things and why he screws up all the time, and then he looked back at me with big tears, and said, I really try Terry, I really do try.

I started crying immediately. My heart was breaking. I felt his pain and embarrassment. On one hand you have therapists and nurses saying he is improving, but in other areas they are deteriorating. Dementia is moving in faster and faster, he could pick up an empty, plastic cone with the therapist, but at supper he could not pick up a plastic half-filled glass. He cries wanting to know why he is messed up, and he didn’t realize prices at the stores.

I don’t know how to feel anymore, I feel confused. I tell myself to get hard-hearted, but I struggle with that. Nurses and doctors say he is in the beginning stages of five, the final stage. The nurse tells me today, to expect things to move quicker now, and that tremors can almost disappear in the fifth stage. All I know is Al is sick, and his body is changing and so is his mind, and as bad as I want to believe that he is improving, I only see him getting worse, when you look at the whole picture.

Related articles

• Find your perfect coffee maker (johnlewis.com)
• Coffee Keeps the House Clean (emahadeo.wordpress.com)
• Bucket List (cliviavogel.wordpress.com)

Less Tremors, More Naps

Yesterday was another one of those days where the tremors had decided to give Al’s body

parkinson (Photo credit: ibarakaldo)

a rest. Sunday was like that also. He has been more smiley these past two days than any other days. I wish I knew, once again, what it was that is allowing him more calmness, because I would make sure I kept that activity a priority. Again, though, it could be all the prayers, and it could also be the fact that he is now in his final stages of PD.

Parkinson’s Disease, from what I have studied and researched, can prove to have tremors become less and less in the fifth stages. I am not sure what causes this, but there is a part of me right now, that if this is true for Al, I almost wish the tremors would flare up to their normalcy again. This way I don’t have to think of any ending at all. I hope this makes sense to  you.

I love my brother and although he suffers many days, I don’t want to be unselfish. I don’t want to ever say goodbye, but that is selfish, and I have placed Al in God’s hands many months ago. I have to trust in God that he has this all in his control, and is doing what is best for Al and for me.

This morning, I knew that Stanley Steamer was coming to clean the living room carpet and the pathways of both bedrooms. I had put off picking up the small items until this morning, knowing I would have plenty of time. They were not to be here until the hours of 9-11AM.

Al got up at nine and we proceeded to get his breakfast fixed along with medications distributed. While Al eats his breakfast, I go into my bedroom and pick up throw rugs, and shoes, and anything else I see lying around.

I go into his bedroom and  pick up numerous coke items strewn on the floor. Now I tell him constantly not to leave items on the floor as it will cause him to fall easier, but he doesn’t listen to me. I go over to make his bed, and find the bed pad and the sheets soaked.

I was really surprised, because Al is always wet, but never soaks the bed or bed pads. I go ahead and pull  all dirty sheets off and start a load of laundry. I disinfect the mattress that is thankfully, plastic. I place the clean sheets on the bed and make it nice and clean for him. I clean the commode and the urinal, and then I go out to the kitchen where he is still eating, and ask him if he had any problems the night prior, and he says no.

I mention that the bed was a little wet and he says he doesn’t know how it got that way. Alright, whether he does or does not remember, is not a big issue, and I will not bring up any reasons for him to feel more guilty than he already does with the side effects of this disease.

So all is done in his room, and he is all finished eating, so I take him to his bathroom, and do a total wash up and get all clean clothes and a clean brief  on him. I breathe a sigh, as I know for now, he is all taken care of and smelling fresh.

I still have my house robe on and as I start to go to my bedroom to get dressed, the door bell rings, and low and behold, the cleaning company is well on time. I am forced to answer the door with hair unkempt, my pretty blue full length flannel house robe, and I try to divert their eyes by giving them my biggest fake smile I can produce. They both look at me, and smiled, saying, hi, we are from Stanley Steamer. I am thinking uh duh, I see the truck dudes!

I let them in and tell them I was just on my way to get dressed, could they forgive me while they get out their equipment, and they nodded yes. Well, they have come and gone, and the carpets look great! You have to wonder how carpets get so dirty when we both take our shoes off at the door, but they do, believe me!

So here I sit at the computer, Al is dozing on the couch as he is commonly found now, which I still have issues with getting used to. Al is a routine man, and he knows by his own rules, that there is no sleeping until three PM, nap time, so to find him napping mornings and evenings is still new to me. My white socks that I am to wear, waiting for the carpets to dry, which will be about four hours,  are already soaked. My feet are shriveled like prunes, my body is cold from having two fans running on the carpets, when it is only 50 degrees outside, and Al is lying with no covers on, head cocked to the side, sound asleep.

The day is good, Al’s tremors under control, clean bed, laundry working, my two cups of coffee drank, and carpet sparkling once again. Can it get any better???