Feeling The Love


Maybe when you are more within your walls you stretch farther for the little joys. Or it could be that since my father passed my faith has grown. What ever the reason I cried tonight. Not because of sadness, but because of love and joy.

Al has really been struggling with tremors. One of the  differences  between Parkinson’s Disease and M.S.A. with tremors is that with PD, tremors tend to fade away in the final stages. With M.S.A. tremors become worse.

This is where Al is right now. Brushing his teeth is a good example. Try to picture this. The battery operated toothbrush is loaded and running. It is in your hand. Your hand is in mid-air. The tremors are so bad that the toothpaste is being shaken off the toothbrush, and the hand can not be stopped. Therefore the once independent act of brushing your teeth is now over. You cry because you are so embarrassed. You can remember when you always brushed your own teeth with no one’s help. This is just one of many things that Al struggles with.

But today, although he had bad tremors all day long, he still thought of me. Through stuttering and a very soft voice he was trying to explain to  me that with the help of school teachers in Day Program he had made me a gift.

A gift? for me? from my brother? Oh wow, I was excited and I did nothing to hide my excitement from him as I dug into his back pack to find the prize. When I pulled it out, Al raised his head just long enough to see my face.

I beamed at him and I put my arms around him and told him, ” I love you so much Bud. This is the best gift I ever got. I will treasure it always and I will put it where I can see it every day.”

I saw a slight smile. I meant every word I said to him, I will treasure it.

 

Open your eyes that you might see

What God has gifted you and me

It doesn’t have to be a three-story house

It can even be smaller than a little mouse

For although the body can no longer move

The heart is still feeling and in the groove.

Written by , Terry Shepherd

08/20/2013

Here is what he made me today.

dream

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

book4

On a Sunday Afternoon


English: Culver's frozen custard deserts at th...

English: Culver’s frozen custard deserts at the West Milwaukee, Wisconsin location.

I was just thrilled today, let me tell you. You would think by now the facility knows how picky I am on Al’s looks with cleanliness, even more so when I take him in public. Today I went and picked him up. We ate lunch at Culver’s so he could have ice-cream.

His tremors seemed fairly under control. He did pretty good eating without spilling too much. I was watching him eat and I  noticed his fingernails. On one hand all four fingers were lined in shall I say yellow-brown?

I thought back to when the staff member was helping him to get in his wheelchair. She said, I caught Al in the bathroom digging.

Alright, I thought, thanks for letting me know that. But watching him when he ate made me lose my own appetite as I realized what the colored nails were from. He had not been cleaned up.

Grrrr, I just wanted to scream. If I have told them once I have told them too many times to make sure his nails are always clean. I don’t know of there is really any truth to it but Mom used to tell me that if there was dirt under my nails when I was a kid that I could get pinworms.

As I sat there I noticed his fingernails not only had the crusties they were also turning dark gray, and then they would fade back to light gray. Maybe I shouldn’t be concerned, because the nurses aren’t, but I am. What is causing this to happen? It has been going on for a couple of months now.

Al’s speech was really hard to understand today. I think part of it is PD. Another part could be the increase of pain medications. His lips barely moved and even after I asked him a couple of times what he said, I gave up. I mostly didn’t know what he was saying. I just agreed with what he was saying but felt awful for not understanding and just playing the game.

He did have one point in our outing where he told me about a dream he had last night. He said he woke up and saw someone sitting in his recliner. He said he didn’t know who it was and then they got up and left.

After lunch we drove to the lake. I think he enjoyed it but it didn’t take long before he was falling asleep on me. He apologized when he woke up and I told him not to worry about it. He said he was tired, so I took him back. When I got him in his room I went to the nurse and spoke to her about the gray nails. She made no motion and said nothing. She just looked at me. I also told her about his dirty nails and how I wanted those cleaned up.

I think  Al had fun, or as much as he could. We did have some choking issues three times on eating french fries. Maybe he won’t be able to eat those anymore, I don’t know. I  would hate it because he loves them.

I left him sitting in his recliner where he wanted to watch some sports, but before five minutes went by he was asleep. I patted him on the arm and told him I was going to go so he could rest and he looked at me and said, I’m sorry, I just get too wore out.

Although I love to take him out, I can see it is a real hardship on him. I told him I loved him and would see him in a day or two, unless he wanted me there for him earlier. I asked him what is he supposed to do if he needs me, and he looked at me with a weak smile and said, have the nurse call you. I said “Great answer” and then left him as he closed his eyes again.

Here are some photos I took while we were out to the lake.

boatbeachcampgroundcemetaryfishingpink tree

Path of Life


A very dear friend of mine has shared this song with me. I love that some of you have come to my Facebook and asked to be a friend of mine. It gives me a chance to reach out and chat with others who may not suffer with PD. We all have problems of some kind. Maybe not today or tomorrow, but there has been a time that you need your friends surrounding you. A shoulder to cry on, someone who will listen to your woes.

I cried like a big baby when I listened to the words to this song. This is something that I try very hard not to be selfish, but darn, it is the most difficult thing I have done in many years. To sit back and not think of what I want.

I am weak and yet I have days where I am stronger than my worst enemy. But there is someone stronger than me. His name is Al. I have the opportunity to sit behind this screen and pour out my heart to you. Who does my brother have? He has his God. When I was cleaning his room the other day I was surprised at the wear and tear that is showing on his Bible. He uses it every day, several times a day.

This book that he goes to for comfort has torn edges and turned back pages. I imagine that if my brother goes before me I will treasure this Bible along with my hidden memories. I will pick it up from the shelf it rest upon and I will  hug it to my bosom. I will cry for missing him and I will cry for  his release from pain.

This song reminds me that each day Al lives he is nearing his wonderful journey home. To even write that sentence I felt the worst stabbing of pain. It branded my heart and sent tears to my eyes without my even realizing.

To lose someone is something we have all experienced. We send flowers, we show our love by going to the funeral home. We send cards and give hugs and words of encouragement.

But when it is all over, we sit in our own corner of life and we are forced to begin the healing process or we die inside. For me I am trying to start the reality of his journey ahead of time.

I have been in denial for a long time. I listen with intense burning at others words. I light candles for hope of a cure. I pledge myself for the cure of PD and I beg others to pledge along with me.

I look back to when my own Daddy was dying. I talked to every non-profit organizations. I walked for Light The Night for Leukemia. Yet God wanted my precious Daddy and he left this earth anyways.

This is the fight that is within me. The fight to never give up until the last breath is taken. This is where my pillar stands tall and the light on my candle shines brightest. I am going to lose this game, I know it deep in my pit. But until that day, that moment, that second arrives I will not give up. I will always have a glimmer of hope.

I will look at the heavens and cry for help. I will continue to come to my friends here at WP for added fuel. To God it is a blink of an eye in time, but for me it has been 57 years so far. If it be thy will Lord please let me have a few more years. But if you want him more than I do, I promise I will step aside and not stop you, but the tears will fall and I will be on bended knees and my heart will hurt.

https://www.facebook.com/michaeljfoxfoundation?v=app_448952861833126&rest=1

Type Terry in the Search Views and please vote for my brother. Help cure PD. You can vote once every hour until the end of this month.

http://www.gratefulness.org/candles/view.cfm?l=eng&c=18304661

Please go and light a candle in Al’s name, a group you will find with his name. Please light the candle in Al’s journey.

candle3path of trees

I Don’t Want to Walk Alone Through This


Alone in the Middle

Al has been dismissed from the hospital and back in the nursing home. There is nothing more anyone can do for him. They upped his nitro to the maximum does in order to try to keep his heart at rest.

Al’s heart is suffering from the tremors. He has CAD, and it is getting tired. On the way back home from the nursing home it hit me what the doctors had said. I started shaking so bad I had to pull off the side of the road and I cried like a baby.

I cried for my selfishness in the thoughts of  losing my brother. I cried for all Parkinson’s patients. I cried because I feel so helpless. The emergency push to get approved for him to come home has been given. The state called me today while I was at the nursing home. Now it has to be signed by a different area of the State and then a Caseworker is put into play.

I want him to pass a way here at home. I don’t care how hard it is to take care of him, I will not let him die in that nursing home or any other.

The doctor ordered a bed alarm for him. The nursing facility called me at the hospital and said they don’t want to use it because he will get mad at them. I told them, “This isn’t for your convenience, this is to alert you when Al stands up.”

“We just don’t want to use it.”

“Sorry, I don’t want Al to fall anymore than he is.”

“He has only fell here once.”

“Bullshit, he has fallen at least four times that I can think of immediately.”

“He didn’t fall two days ago. He was found on the floor.”

“Oh really? What was he doing on the floor?”

This argument went on for about five minutes and then I said,”I am his guardian and I say use it. No more arguing.”

His heart is suffering and he kept breaking out in clammy cold sweats all day. Many partial baths were given. When we got back to the facility an aid asked Al if he had to go potty. I guess he told her no. Five minutes after they laid him down on his bed he wet his brief, clothes and bed. When the aid found out he had done this she looked at me and said,”I just asked him five minutes if he had to use the bathroom and he said no.”

I told her it is the PD and not Al. I apologized but said,”He is wet and he needs to be changed.”

She got some help and the two changed him. The put a pad between the bed covers and Al’s bottom. She said she had a shower to do so she would change the bed later. To me this was wrong, but I let it go, he was dry for the moment.

He cried because he was embarrassed about wetting himself but I told him, “You can’t help it bud. If you could I know you would get up and go to the restroom. Please try not to feel bad.” I know my words fell on deaf ears.

It has been a bad day. I didn’t receive good news at all. Al life is being cut sooner than later. I am tired. Al is tired. I am sick to my stomach and I keep feeling the tears at times. I love my brother. I know he is suffering but I don’t want to lose him.

If anyone wants to help another PD patient not have to go through what Al does, please go to this website. Look under search or view entries and find Al’s photo with my name under it. He is in his famous red coca cola shirt. Here is the link.

http://terry1954.wordpress.com/2013/04/07/16-the-michael-j-fox-foundation-for-parkinsons-research/

You can vote one time every hour. Please help so others don’t have to suffer like Al  is.

 

 

(16) The Michael J. Fox Foundation for Parkinson’s Research


(16) The Michael J. Fox Foundation for Parkinson’s Research.

Please go to the page and vote for Al and me………….

Please go to View Entries. Al is in a red coca cola shirt. My name is under the photo

Daily Prompt; Comfort Zone


The Gentle Grasses of New Zealand

The Daily Post, DP,http://dailypost.wordpress.com

What are you more comfortable with — routine and planning, or laissez-faire spontaneity?

I am weird. I am the one who looks through the new calendars in January. I look to see who’s birthdays fall on what days. When are the holidays?

If I could book my life year to year, I would be quite content. There is a large part of me that finds great comfort in the word routine. Surprises I enjoy if it is my Birthday.

I really believe this is something that God has been trying to teach me for years. I call it getting set in my own ways. He describes it as be ready at all times.

For me not making too much effort in being flexible I am thrown a lot of curve balls. Even a habit has formed from this. I look in the mirror at the reflections I see. Watching my own picture show. Next I pray, then I come to you, my friends for support.

Does this make me stronger or more wimpy? In my opinion it doesn’t make me wimpy. It allows me to grow stronger. I still go to God and you for help and support. But I am always shocked at the new challenges thrown at me more often than not, and I remain standing.

Al has Congested Heart Failure, Parkinson’s Disease and is mentally challenged. If I wasn’t strong I don’t think I would ever consider letting him move back home. With God’s help I can do it along with help of caregivers.

We are much stronger than we give ourselves credit. Look at the man who is crushed under a car. No one around is there to help him. You take quick action and race to save his life. Without thinking you lift the car up and a way from him.

Yes, strength is within us just waiting to come out. But until it is needed we continue to live in our daily comfort zones, well at least I do. Routine is comfortable to me indeed, but I can still stand strong when I need to.

A Special Day


Al

Today is a day full of clouds and drizzle. There will be no sun for a couple of days at least. After getting my doughnut tire put on my car yesterday I went to the tire shop this morning. For very little dollars they fixed the tire and put it back on the car.

I was set to go. Taking off I got about two miles down the road and put on my turn signal to turn and the blinker was going double time. I thought oh no now what. I turned into an Auto Zone and sure enough they found one of my turn signals had gone out. Is this my week or what?

I bought the new bulb and had to go next door to a gas station that works on cars and pay them a few more dollars to replace it. These newer cars are so packed under the hood, you have to take out a lot of things just to get to the blinker bulb. I remember the eighty models and prior, I could do myself.

Finally, all four tires were on and good, turn signal was working, I was ready to go about my drizzly day. I went to the business where I take my water classes. I went to tell the teacher that I probably won’t be able to return to class until this Friday. My eye is much better but still not completely healed.

They were glad to see me and asked me about Al. I left them to finish their class and as I was getting ready to leave the building I remembered I had a card in my purse. I received this card last week and it said it was good for this particular business.

I had changed insurance companies on January 1st, and then received this discount card. When I showed it to the lady at the desk, she said this is your lucky day. I thought well I need some luck because all I have been doing is spending dollars on the car.

Come to find out this card is a perk to go along with my new insurance. When she ran it through the system, good news. It entitled me to a free membership. Wow, no more paying monthly dues, I could do anything there for free. I wanted to do somersaults! I was so excited. Yes, I can handle this good news.

I thanked her and went on out the door. Last thing on the list. Go see Al. I walked in and his fingers were full of blood. I looked his face over but saw no new picked areas. I asked him about it and he said he had a nose bleed this morning. He told me his sugar levels were low at the morning check and they had to do it again.

I went and talked to the nurse and she said that he did have a nose bleed. They didn’t know from what. I suspected the dry air. Evidently Al did have a picking party somewhere in that morning. I asked the aid to please clean his nails.

She said his sugar was 87 and that was perfect. For me, that number is not perfect. All I want to do is sleep. I work better at the 120 number. I can’t figure out why his sugars are on the low side but will keep an eye on them along with the nurse. I don’t want him going into a coma through the night.

I asked Al if he wanted to go out to lunch since I didn’t get to take him yesterday. He first said no, it was too close to lunch time and his tray was probably already made. I told him I bet he could go. So off to the nurse again. Al and I ended up leaving and going to his favorite place to eat. Yesterday and today he was and is having good days. He is walking with his walker and no wheelchair. Yeah!

When he walked in, everyone said hi Al, how you doing? We have all missed you. Oh you should have seen Al’s face. The biggest smile just stretched from ear to ear. He talked to each of them. We sat down. Al couldn’t get his coat off so I helped. It took him quite a while to sit on the stool, and then we ordered. He ordered his favorite meal. A breaded cheeseburger, french fries, a medium diet cherry coke and sugar cream pie for dessert.

I ordered a tenderloin with no bun and some cottage cheese and a small diet coke.

He was so involved with talking to all the waitresses that I got a little lonely. So I looked to my side and an elderly man who looked just like my grandpa that has passed on was seated beside me. Even Al told this guy that he looked like our Grandpa. I will admit it was a little weird. Same height, same build, brown eyes bald on top, and age marks on his head almost identical to grandpa’s. Has he came back to visit? Gave me the shivers.

Anyways since Al was chatting, I picked up a conversation with the gentleman. We talked like we had known each other for years. I do seem to talk to elderly people with ease, so this made a plus. He was very interested in Al’s tremors he was seeing, so we talked about Al and what Parkinson’s does. This gentleman was probably in his 80′s. I had seen him in here eating before but had never had the chance to talk to him.

He was so nice. He asked what I did and I told him I am a caregiver and he asked how long I had been taking care of my husband, and I explained it was my brother. He said that I was a good sister.

We chatted for about a half an hour while Al ate and talked. He finished his pie and when Al was ready I helped him put his coat back on. I turned to pick up the check and the gentleman I had talked to said this is my treat. I said oh no you don’t need to do that. My brother is a big eater. He said I want to, so he paid for our meal. Can you believe that? I couldn’t. No one ever pays for my meal. It is usually me that pays for their meals.

I thanked him a couple of times and he patted my shoulder and said that I was such a nice young lady. AW that was so sweet. He called me young. We all said our fare wells to everyone and Al wanted to look around since they sell coke products. He was doing really well. I was so impressed and then he went down.

His legs just couldn’t take that much walking. I told him I was sorry. I told him that I should not have let him walk that much. He told me that his legs were just rotten and they didn’t want him to walk. We both laughed as I helped him stand back up. He wanted to go back to the nursing home, so I took him back.

He said thanks for taking him, and I said it was my pleasure. I told him I loved spending time with him and he smiled at me. He wanted to rest so I said good-bye and I came home. I made it home with no flats, no burnt out signals. I did good.

God is good. He gave Al and I a great day together. These are the days I will treasure for ever.

My Eye Started My Day


This morning when I woke up, I didn’t feel much eye pain but I could barely get my eye open. I went and looked at my face in the bathroom mirror and thought, holy crap!

My eye was puffed up like blown-up balloons. I did the hot water pack. This is when you wet the wash cloth with as hot of water as you can stand. Then you place it over the plugged tear gland, and then repeat as the water cools. You do this for about five minutes. Next you put the gooey gel in your eye lid.

Did you know that those tiny ducts are right beneath your eye lashes. I took a mirror and looked at my eye lid. I could see many tear duct holes. Yep, and I could see the one that was plugged too. Darn little bugger.

I thought,today is the day for my reading. What am I going to do. I can’t see well out of both eyes with the gel in them. I am going to have to go to the doctor to get an antibiotic.

One other time when I got this infection the gel didn’t work good enough so I had to have some Amoxicillin to help it along.  This seemed to be another time. I was ready to dial the doctor and then remembered it is Thursday. This is the day he is not in. Isn’t that the way it always works out?

I went to the Med-clinic, and I knew I was pushing it with time, as I had forty-five minutes until the book reading clinic. Thank goodness the office was empty. I got right in, but what I didn’t know was that each of the little rooms were filled, so I had to wait.

I let the noise of the screaming baby in the next room to me entertain me and then I glanced through a magazine that promises to make you beautiful. I should have read that one first. I didn’t get to finish it before Mr. Dr. came in.

I got my prescription I needed and thanked them quickly as I raced out of the office over to the restaurant. Great food but little parking. I drove around and around. Wait, let me off of this Merry-Go-Round! Someone get out here and get in your car so I can have your space! Hurry up and eat will you! LOL

Finally someone came out and I raced in. I was 12 minutes late, but others were just being seated also. I just sat down and had not even ordered, when I got an important call and had to leave.

I haven’t spoken about this yet and will not yet until I know more final details, but as usual it had to do with my brother. So no reading and no lunch. I went to see Al and he is having some stability issues. One thing is for sure at this place. Al and the staff’s words are complete opposites. There is supposed to be someone in the bathroom watching and assisting so Al can get washed up in the mornings. Al says there wasn’t and the staff says there was. Al said I almost fell. Staff says they knew nothing about it. Gees, get the stories straight somebody!

I did some talking to the office and visited with Al. His forehead is full of bloody scabs where he sits and digs. He was in bed as usual. The Parkinson’s was doing its shaky things. I stayed about an hour and told him I would see him at the hospital tomorrow morning around 9:15. He has the swallow test then.

Now I am home and my eye is sore but I have popped one antibiotic and will take another at bed time. Hopefully tomorrow it will feel better and not look like a Puffer fish. Here is a photo of the little doctor’s room I waited in and if you look closely at me waving you can see my one eye is puffy.doctor's officemy eye

Swallow Test


English: Question marks with transparent backg...

I received a phone call earlier today. A staff member was letting me know that the appointment for Al’s swallow test is January 25, 9:30 am. She said for me to meet her and Al at the hospital.

I said thank-you and hung up. I jotted down the time and then I sat here wondering why the hospital? What kind of test is this? What are they going to do to him that he has to go to the hospital?

Does anyone know what is going to happen during this test? Will Al feel any discomfort?

Yesterday The Mountain, Today The Valley


I am so angry with myself, because I can not get the change to take place from deep within me. I have had prayers. I have many friends, and yet it only takes one moment and my heart is again breaking. I am too much of a softie. My heart expands too big. I am not tough enough around the edges.

The only thing I can say is that today, I walked out of the facility with no tears. My heart was in my shoes, and I came home and played my Time Capsule I made last evening over and over.http://wp.me/p2g4Y2-46d

I had my water class this morning. I actually laughed and talked much more than I used to. The teacher asked me to bring in a poem that I have written. She wants to read it herself. I pondered on that, since she doesn’t really know me, but she says she wants the honor of reading an upcoming publisher’s work. I couldn’t help it. I laughed. I felt bad for laughing, but I know I will never become what she is suggesting.

I told her I was laughing because I was embarrassed by the nice complement, and thank goodness she believed me. I had a great time exercising and socializing. Next Thursday is when this poem will be read.

I showered and changed and went to see Al. I saw that he was sitting in the new dining room. He was upset. Not at me but at the changes. I think it is so difficult for Al to accept change like the rest of us. It takes him too long to digest, but some of it he did get.

The kitchen staff had scribbled out the breads on his menu and this upset him terribly. So now he had been moved to a different dining room, had his straws taken a way and no breads. That is a big amount of change at once. I convinced staff to let him have the garlic bread as that is his favorite bread, and they agreed.

Al was throwing a temper tantrum over the changes. His tremors were so bad that he knocked over his dining partner’s water-glass. He was crying hysterically, and then started to swear. I explained that if he was not willing to stop eating more than one snack at night, they were going to take something a way. He did understand this. He knew that he was eating more than he should have, but no one was stopping him either.

The nurse then came over and tried to explain about Al’s heart and his weight gain. I even piped in and told him to try to go back to when he was here at home and have just one snack again with his pop at night. The problem is, that by law, the staff can not tell him no on foods.

It is very possible that with the fit he threw he may get the breads back, I don’t know. He would not calm down and so the nurse pushed him back to his room. I stood in the shadows and let the nurse try to talk to him. She looked at me and I tried, but nothing worked. He went on and on about how every one wants him to drink water only.

They want him to starve. He asked the nurse to go a way and the only one he wanted to stay was me, but the nurse looked at me and said,” If he doesn’t settle down, we will be forced to call a Psyche Unit”.

Unfortunately Al heard every word and got even worse, saying no one liked him. Before I knew it I was telling her,” Please don’t do this. I have had Al at these places before and they refuse to treat him because they believe this is mostly due to side effects of Parkinson’s Disease“. She looked at me and said, “Oh I was just kidding”. I thought to myself,just kidding, just kidding! Do you realize that Al has heard every word you have just said! You now say you are kidding and now look at him. He will not settle down and probably will not eat.

She looked at me and said ,” He needs a time-out. I suggest you go on home”. Al and I looked at each other and I told him I would be back Friday, but maybe I will go in tomorrow. I will definitely call later today.

I have always looked at myself as the one solid thing Al can count on. I am getting a little tired of being told to go home. Maybe I can say nothing, maybe I can do nothing, but I can sit there with him, and he will know that he is not alone.

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