The Lump in my Throat


As I have stated before I am weak when it comes to people I love. I am writing this post to help heal my heart so that I will be able to sleep tonight.

When Al has had to go to Hospice house before he has a certain amount of time that he can stay.Hospice_house_lead_w_caption I pretty well know when he is returning.

But this Hospice visit is different. He is there only for medication management.

The Doctor sees Al daily at least once per day. I know that Al has had bouts of pain issues, irritability, tears and sorrow since he has been there.

I know that they have removed the nasty drug he was on and replaced it with a more nasty drug. They have removed that one and started a new one twice now. They have doubled at times and changed at others.

Today he has not had any problems. He has had very little pain. He seems to be holding his own. So I have two issues going on in my head.

1. I always had this invisible line in my head. I knew at some point when Al is in the active dying stage that I didn’t care what they gave him. He wouldn’t care at that point. Life would not mean as much to him, nor his cars or coca cola. But he isn’t in the active dying stage yet. That is the next stage he will go into. So my issue is how does he have quality life now? How does he enjoy anything and how can I keep him so he knows who I am and what is going on? When does that line disappear and we go to comfort all the way at any expense?

2. I was so totally confident that he would be coming home tomorrow. The nurse and I just spoke on the phone. She said in her opinion he is ready to come home but it is  up to the doctor and the doctor has to discharge him. Wow, what a disappointment in my heart.

But do I want him home and then he suddenly has to go back because his pain is not in control? Will he come home being so-called out of it? I must wait, it is the right thing to do, but my heart doesn’t like it. Rhino our cat doesn’t like it.

I know that they took Al off the nasty medication he was on here and put him on a different nasty drug with terrible side effects. Then they took him off of that when that didn’t work and put him on a new one. Then they had to double that dose because that didn’t work. Now today they have tried a brand new one. She said he seems to be better now.

I feel so bad for him. I know that when I am sick I just suffer like the rest of us and pray for the day I am better. For Al, he has suffered for a year now with pain getting worse by the month. How he must feel exhausted and worn out. How his spirit must sometimes feel like giving up, dealing with the aggravating pain and all the side effects of the medications.

A year and a half ago Al still walked. He didn’t need a cane. We didn’t need a wheelchair ramp. We didn’t have wheelchairs or hospital beds. He was able to go to the restroom by himself, feed himself, dress himself. Now this little bit of time later he is totally dependent on me.

He can no longer stand safely. If I do get him up he stands on his heels because his feet are so contracted. 90% of the time he needs to be fed. He wears briefs at all times now. He can’t ride his scooter or push himself in his wheelchair. He chokes at times. His breathing is usually labored at different levels. He has to be bathed and dressed. It is the fastest moving illness I have ever seen in my 23 years of medical experience. I hate MSA. If you look it up online you will see the terrible information that says they don’t know why these patients get it nor do they have a way to stop it.

I just wish I could do something to rid all of this from him. I know, only God knows the reason for all of this. I am only human but I have a very active heart when it comes to feeling emotions.

When she and I hung up I just wanted to sit down here and cry. My eyes welled and a lump in my throat appeared, but I know Al needs to be at some point of comfort before they will release him.

I can’t help it though. I miss him and still hope God allows him to come home tomorrow. I have such empathy for all patients that are terminally ill. I pray that when my time comes I just lay down and go to sleep. If I get an illness I hope it is short-lived.

Medications can help but with their strong side effects when you are dealing with several medications can  sometimes do more damage than the illness but you can’t let him or anyone suffer in great pain either.

Well it helped me, the lump in my throat is still there, but the eyes are still moist. Let’s hope that Al has a nice Christmas, right here at home.

I Did A Bad Thing In Al’s Eyes


Last night things were going pretty smooth here at home with Al and his illness. It came time to get his bedtime snack and medications. I popped in to ask him what he wanted and he was asleep.

It took a few moments to get him to actually wake him up. He let me know what he was hungry for and I went and got everything ready. He ate and I played on the computer so I could hear if he needed me.

He had been watching Highway To Heaven, http://en.wikipedia.org/wiki/Highway_to_Heaven.

When he rang his bell to let me know he was finished I went in and decided to sit down and chat with him for a while before getting him ready for bed. It was then that everything changed.

I sat down in his wheel chair and he looked at me and his face instantly changed. He went from sober faced to crying big tears. It threw me off guard for sure. I immediately asked, ” What’s the matter bud? Why the tears?”

” You are sitting on God.”

” What, what did you say?

” You are sitting on God. He is sitting right there. He is telling me I am being stubborn.”

I immediately jumped up from the chair and took a seat on his bed. Now granted, I didn’t really think I was sitting on God’s lap, but instincts kicking in, I jumped right a way.  I asked,” What did God tell you again?”

” He just told me I am being stubborn. He said I won’t close my eyes and let him take me to heaven.”

Wow, I was speechless. First I was sitting on God and then I evidently interrupted a very important conversation. Al was calm, then crying, then hysterical. He was screaming loud enough that I had to close his bedroom window for fear of neighbors thinking I may be over here beating Al or some crazy thing.

I actually don’t know if I said it right, did it right, or what ever I was supposed to actually do but I remember using explanations of what could actually be happening.

” Bud, you were sleeping when I came in here. You were probably dreaming. Al it is the show. It is sad and it is about God, maybe we should change the channel and watch Pawn Stars. Bud, maybe it is Satan trying to fool your mind, getting you all upset.”

This is when he let loose on me. He looked at me with big eyes and with the strongest voice I have heard in some time he said, ” No, I am not confused. God was here. You sat on him and now he is gone. He told me I am being stubborn.”

Well, I wasn’t going to argue any points. He was adamant on what he saw and heard. How can I judge or argue anyways? He is the one closer to seeing God than I am, I think.

It took quite a while to get Al settled down enough for me to think I could safely put him to bed. He went through two hankies before I got him into bed.

Finally I got him to stand up and I changed him and placed him in bed. He was correctly positioned and I asked him if he needed anything else. He told me, ” No, I am fine but do me a favor. Don’t sit on God anymore.”

I turned the lights off and left the room. I felt a little spooked inside. I didn’t know what to think. I went straight to bed and lay there in the dark trying to digest what had just taken place.

I don’t know what happened, but I was happy this morning when Al rang his bell letting me know he was ready to get up.

purple candlesriver

 

Fair Day, Good Day


When Al first comes home from the Hospice House he is the best. So we take advantage of these times. Today is one of the new normal days he doesn’t go to Day Program so his body can stay rested.

But today was a special day. It was Street Fair day at Day Program. I didn’t know exactly what to expect. Would the parking lot be crowded and I would have to push his wheel chair a mile? Was it out in the parking lot? What would be going on.

We pulled into the parking area and nothing seemed different. When we walked in anyone that saw me pushing Al came up immediately and said hello to him. One of the office people was in view and Al told her immediately, ” I can only come three days a week now. My body gets too tired.” She gave him a pat on the back and said, ” I know Al, but we still want you here. Even if you have to drop more days, we still want you here. We love having you with us.” With that, Al wept a little but not bad.

I whisked him off to the courtyard where the little fair was going on. Now for you and me we wouldn’t even call it little. We may call it a speck, but for people like Al and the other clients it was a change. A chance to get outside in the fresh air. A chance to visit with their friends. A chance to have some fun.

There was some tables sitting decorated with different articles representing what each class was based on. There was a game of corn hole, a little miniature golf course and a batting cage.

One of Al’s hero, named  Andy  was in charge of the games and he took Al from me and pushed him to each game. Hand over hand Al was able to play each game. He beamed from ear to ear.

I couldn’t help let out happy tears as it was so wonderful to see this caring man helping Al to enjoy the hour. For every game Al played, he won a plastic dollar. In the end he had gained three dollars and turned them in at the gift area. He bought himself a key chain, a deck of cards and a new hankie or bandana.

Al was thrilled. His head was beginning to hang pretty far. A sure sign his body is tiring out. Scott helped me get Al back in the car and of course Al said he was hungry. I took him to his favorite soda shop and he ate a whole cheeseburger and french fries.

We came home and I changed him and laid him down. He is already sound asleep. I am so proud. The part of me that is human didn’t really want to take him. I was thinking of the heavy wheel chair, loading it and unloading it is hard on my body. But he had a good time, and I had a good time knowing he smiled so much.cornhole2mini-golf-1-big

A Seed Was Planted


I started my day off pretty good but as it went on I became more tired, sleepy, worn out and irritable. By the time I had to meet the hospice nurse, I must have looked ragged because she asked, ” what is wrong with you?” I guess my body gave me a way.

I had company this afternoon. The phone rang over and over. It was always about Al. I didn’t even get my 15 minute cat nap today. Oh don’t get me wrong, I would have it no other way. I like knowing Al is home and this is where he will remain.

But gosh dang, my age is starting to catch up with me. What I could do five years ago, I can’t now. What energy I had this morning was gone by afternoon.

I tried to talk Al into letting me transfer him from his wheelchair into the car. I said, ” let’s eat out.”

No was his reply. I brought him in and fixed supper. After supper he brushed his teeth. I emptied his lunch box and cleaned it out. I emptied his back pack and put his show and tell car a way in his room.

Then I changed his brief. He took one look at his room and started crying. I was afraid of this but had to do what I had to do. You see, I don’t like being the mean bitch of the house. But with Al’s illness going at a shooting starflashing star    http://youtu.be/EUlJsbIXsNo    I have to change things around in his room.

With all of his cars that he won’t let me put back in his closet and the ton of coke stuff all over, I have no room to manipulate that wheel chair.

I had to rearrange his room moving his bed to another wall so I can parallel his wheel chair to the bed as he can’t pivot any longer. Of course I explained why I did what I did but he didn’t care.

Well I did care. I cared about whether he was going to fall. If I let him go it would take him about five minutes to move one step. I can’t afford that kind of time so this is once I did what I did for his sake.

After his crying spell was over I left the room and he did nap. I came out to the kitchen and did the dishes. I had pill boxes to refill and his takes a long time to do. Mine is done in about a minute.

I then got his stuff ready for his lunch for tomorrow and got his clothes ready for his shower in the morning. Finally, I was done. I looked at the clock and I had 23 minutes to spare before he would get up according to his routine. I hurriedly got me a nice cup of coffee and came over to the computer. I flipped my game on FB on and was in the middle of the first game and the bell went off.

Crap, double crap he was a wake. I didn’t know whether to laugh or cry. I went in and changed his brief. Lined up the wheelchair and stood him up. I took hold of his one arm to put him in his chair as there was no walking involved and he hung on to the bed for dear life.

I told him to let go that I had him. I think he about broke my back because my mind was on forward as his was on stay. Finally I got it done and he was seated in his wheelchair, transferred then to his recliner.

I started to walk out of his room back to my coffee and he wants to hold cars. Which cars I asked, those cars, which ones bud, those. Fine, I will figure it out. I will get each one down until you tell me I have the right one. Eventually I had the right one for him and came out to my cold cup of coffee.

I suppose I am hurting because I had to stand yesterday at the auction for four hours. My diabetic feet and back can’t take it. In order for me to get fully refreshed and a good day’s start I need 8 hours sleep. Ya, I know, to some that is a lot, but for my body that is what it takes to feel my best.

Day after day I don’t get that. Sometimes six, five, two, I never seem to catch up. I guess a little bit can be contributed to the fact I am almost 60.

While sitting here I remembered I hadn’t opened the mail. I discovered there was mail for Al. Three cards in fact.Al's cards 6 I want to thank Sandra R. from North Carolina. Thank-you also for the gift you gave to Al, Sandy.  Diane S. from Canada, and thank-you for the prayer cloth my friend. Also I want to thank Paula A. from West Yorkshire. Thank-you also for the post card you inserted about Whitby Harbour. I appreciate you sending me my own little card with your photo on it. It is very pretty.

It was at this moment that God had intervened. He knew I was at one of my little breaking points. I was going to sit and cry in my coffee but instead he planted the seed that we had mail.

I took Al’s cards to him and his tears turned into smiles, then I smiled. I am tired, I  hurt, I want to sleep for three days at least, but God let me know that you are all standing by me and Al.

God bless and many hugs to each and every one of you who has sent cards. I think in all he has about 21 cards. Remember if anyone wants to send him a feel good card please email me at

tellmenolies2004@yahoo.com

for his address.

As I am getting ready to close on this post I have to say caring for Al is very hard work, but he is working harder at staying functioning. My concerns are nothing to his, and when I get tired, I can stand by you.

Mom Is In Heaven, But She Was Here Tonight


Today was not really too bad a day until this evening.

Al had his shower by the Hospice aide, then he laid down for a nap. He knew that I was going to take him to the fair today since it was free day. I told him we would eat supper there as a treat, even though I know how darn expensive fair food is.

To get Al ready to go somewhere it takes a lot of physical effort from myself. I have to take his wheelchair and him out to the car. Place him in the car, buckle him up. Place the folded wheelchair in the trunk. For me this is quite an effort as I have to lift it to trunk level and then push it inside. You also have the foot pedals and the cushion that he sits on.

For today I also had empty boxes from his briefs and liners and pads to throw a way. I had three bags of trash to take out to the trash. I had to get his and my medications for supper. I had to remember to take an individual size container of applesauce so he can take his pills.

It really puts my body through the wringer, especially my feet as they have Diabetic Neuropathy. Any time I lift or walk much they ache and burn, but I look at it as not for me, this is a treat for Al.

So we get to the fair grounds and it is packed for Free Day. There is no place to park that I won’t have to push his chair through gravel. I end up driving straight through to the actual fair and  park beside the radio bus. I leave Al buckled in and hunt down someone who works for the fair board.

I have to know if I can park inside the perimeters of the fair and I have to admit to these men that I can’t push the wheelchair through gravel and stones. They were very nice and said that today was open day and they would allow it but after today when everyone had to pay I could no longer do it. I told them that this was the only day I was coming and they stayed near by to make sure I got Al out.

After Al was out of the car, the men pushed him up the small slant so I could have it a little easier. I thanked them generously for their help in all they did.

I took Al to one of the food stands and found two empty seats. We were under a roof so he didn’t get too much sun. I ordered and paid for our food and then we ate. I knew it had been a couple of hours by now since I had changed him so after we ate we headed to the Arts building where I knew there were restrooms.

What I didn’t count on was that the bathroom doors of both gents and ladies doors were too small to get the wheelchair in. I started freaking out inside wondering how I was going to change him in private.

I am standing there going over ideas when I spot a lady that used to be Mom and Dad‘s old neighbor. I go up to her and explain that I could use her help. She sort of hesitated, which I guess this is normal. She did help. We got Al as far in the bathroom as the chair would go and then I stood him up and she and I walked him to the sink so he could hold on.

All of a sudden he starts crying and he never stops. She and I try to get him to stop but he is embarrassed that he needs help and more so because he and I knew her. But I did what I had to do, other wise we would have had to go home.

We got him changed and she washed her hands and then my turn came. We got back out in the main part and he is still crying. Then he starts his ranting about his disease. Going on and on about how it is taking over his life. He did something wrong to have it. It is taking over his whole body. He is going to die.

People were staring. The lady that helped disappeared. I tried to calm him down but it didn’t work. After all the physical work and the big dollars for the meal I had no choice but to bring him home.

I felt cheated, I am not going to lie. I had to dig down the fair people in order to park. My feet were burning from trying to push him in gravel. I begged for help to change him and now we were going  home.

On the way home he was still crying and feeling sorry for himself. I have so had it with his feelings of self-pity. I am sorry, I don’t mean to be a meanie, but I have told him so many times he could be so much worse off, but he is all about him and it will most likely remain that way.

After getting home I unload the wheelchair, put it back in a sitting position. Put the pad in it. Help Al get out of the car. Lug him up the ramp, open the door, pull as  hard as I can to get him over the bump from the ramp into the house, and finally get him seated in his lift chair, safe and sound.

My back is hurting, my feet are burning, and my fingers are kind of numb from hanging on to the chair to pull him. Still he is going on and on about his illness. I finally looked at him and said,STOP, I can’t take your pity talk anymore.

I explained what I went through out of my love for him and how I was disappointed that I didn’t get my ice-cream from the Dairy Barn at the fair, and now I would have to wait a whole other year.

He is not listening. I should have just shut my mouth. He is telling me how his body is sick all over and I am agreeing with him. He is telling me that it is probably going to kill him and I once again agree.  He started to say something else and I stood up from his bed and walked out of his room. He sat there in silence and just now turned his TV on. I bet he sat there for half an hour in silence. Maybe he was digesting our conversation.

I was pooped and sore. I came out to the computer and plopped my rear end down and lit up a cigarette. I knew in my heart that outings with Al were officially over. There would be no more pleasure trips unless I had guaranteed help, and I find that hard to believe it will ever happen. Everyone I know runs the other way when I ask for help.

When I took out all the trash I had laid clean bags inside of the cans. When I finished my cigarette I leaned down to pick up the bag. I felt something brush my arm. I thought it was a fly but it wasn’t. I turned around to see what it was and right here in the middle of my computer desk laid this. I instantly felt or heard something tell me, it’s alright, I am here with you. I didn’t get scared, instead I felt comfort as I knew in my gut and heart it was Mom. Threads that she used to sew with and the wads of thread she left behind were exactly like this one. This is in the same color as the feather I found on my bathroom floor a few days ago.

Thanks Mom, it brings me comfort that you are here and you understand……………………

my mom and dadMom and Dad

stringThe wad of string she left me on my computer desk. I love you Mom and miss you. Al is asking for you, he misses you too. I love you Dad and so does Al in his own special way.

First Day Home


Hi all my friends. I was very upset today. Not with any of you, not even with the facility. I was upset because I had to pay family gas money to bring Al home. Maybe I shouldn’t have been but I was.

With me getting over that quickly I was calmer than I thought I would be. It took me no time to gather Al’s belongings and get them in the car. By the time my helper arrived, there was only one shelf to take off the wall and a three drawer plastic cart left.

Coming home was very warm and I knew Al was paying the price when I looked at him but once we got inside the house the air was on. He wanted to take a nap immediately. I got him settled and then started to put his belongings a way when the Hospice nurse knocked.

She and I spoke for a couple of hours. She wanted to rid some of the extra medications. Believe it or not he is on 18 medications. But when she went through them one by one each one was in three categories. They were either for pain, heart, or blood pressure.

It is amazing at what we put in our bodies to be able to live a while longer when we are ill. I was shocked at how much he was taking but sad that we couldn’t take him off any of them.

Instead of calling 911 to take him to the ER I now have instructions to give him pain medication from here, one of them every hour for two hours, call the nurse on call and wait. In a way it is nice to have your very own nurse involved and at your beck and call, and in another way, it eats at me a little that I won’t be able to take him to the ER in case he is having a heart attack.

But the truth be known, as I said before, the ER trips are for the internal tremors. And we all ready discussed the pros and cons at this point in his life.

The nurse and I discussed routes to go now that they are in charge. I won’t be taking him to the family doctor any longer. Hospice will get all of his medications. It is nice to have someone on my side.

I bet the company that brought the wheel chair and bed yesterday is perturbed. I didn’t realize that when Hospice is in charge they get the medical equipment,  bed, wheel chair, briefs, gloves, and bed pads. Now tomorrow the old company is coming to take back the bed and wheel chair and the new company is doing a pretty good job at being here at the same time setting up their equipment.

Al ate a small supper but did finish it. He had a cut-up in tiny pieces  burrito, cottage cheese, and get this, a donut, one of those dunking stick types. He did pretty good. He didn’t want to go to his room.

It made me feel good that he wanted to stay out in the living room with me. He had me put him in front of the TV and although it was very difficult to hold his head up, I think he listened, but I have to be honest, most of the time he slept.

I finally talked him into going to his room about 9:45, and he is sitting in his new lift chair, which by the way, it made it real easy to get him in it. He is drinking his diet coke, but when I peeked in a second ago, he was asleep. He sure does sleep a lot.

It sure is good to have him home again. I don’t care how sick he is, he is where he is loved and between Hospice and me he will get the best of care. Monday morning he gets on the bus and starts Day Program.

Another Rock In The Road, Prayers Needed


I wonder what life would be like if I was not a believer in Christ. Would that red-horned creature leave me alone? Would I be able to do what ever I pleased in life with no consequences, or maybe no conscience?

Just when I think I am climbing the mountain and I see the top not too far off, I stumble over a rock again and come tumbling down.

Each time though there is a branch hanging over a cliff and I am able to precisely curve my body over and catch it, hanging on for dear life and calling out to God.branch

I have everything running smooth. I have done all I have been asked to do. I even bought the groceries for Al today. I am so proud that I finally got this task done and forgot nothing.

I received a phone call from the waiver people asking me to call the bus company to arrange for Al to be picked up and brought home.

The first response on their side was pretty much negative. No time, no extra spaces. As we talked longer and longer she and I clicked.

In the end she ended up telling me she would make a phone call to the lady working from the day program and see what hours were available and she said she would make something work out.

I knew that there was a chance that Al may not actually go in at 8:30 am as there are many wheel chair riders and not enough  buses. It goes on and on. I have to remember that this is a big company.

Then the bomb fell. She told me that the community I live in is a place they are not welcome to bring the buses back into. She said the owner is something else and that  he is mean and rough and I have to agree. I can remember back to last summer when we had the wheel chair ramp built for Al. The owner stopped by and told me I had to tear it down immediately.

Now I knew that I wasn’t going  down  without a fight. He and I argued, he threatened to kick me out that night. I knew he could not legally do this over night but I just really didn’t need the hassle from him.

I understand that he is mad at the world. His wife was placed in a nursing home last winter and he has been mean and an ugly monster ever since.ugly-hamsters2 He will come by and practically measure my grass that grows around the bottom of the ramp.

Oh don’t get me wrong. He isn’t just picking on me, he picks on who ever is near him on any day. I just get tired of the fight.

Now this is where I asked the question in the beginning. Is God constantly testing me to see what direction I will take? If I didn’t believe in God would I be faced with all these challenges? I will not turn my back on God no matter what, or I should say I hope I never do.

I will fight this battle  for the life of my brother. I know that I can not get him in the car and down to the main gate every single morning alone. I need that bus. It will make it easier and safer for Al to go straight down the ramp onto the bus ramp.

I have called the owner’s assistant manager and I am waiting for him to stop by. He is out here in the neighborhood. I have a little more faith in him than the owner. At least he smiles. But on the other hand he will have to run it pass the owner.

I need a written letter giving permission for the bus to stop here at the house. What I really need is tons of prayers to turn this monster into a prince and say yes. Can you help me by sending lots of prayers?prince

A Veteran and Our Clocks


I forced myself to do something or not to do something today. I did not go see Al. You may banjo clockthink why would you force yourself that?

Well, I just needed the break. I had to take some time a way from the one thing that brings me down so quick. Not Al, of course, the facility itself.

Being in a facility can tend to take a way smiles and laughter. You walk in and immediately see elderly people sitting alone in wheelchairs. You may hear a few repeating the same sentence over and over. It seems they are talking to non-speaking walls.

Many sleep in their chairs or sit in their rooms waiting to eagerly go to bed or to a meal. So many sad faces. Lifeless bodies consuming a colorless chair with two big black ugly wheels.

Then I step into Al’s doorway. His roommate is quiet as usual, most likely sleeping with head tilted over in his wheelchair. Al is behind a divided curtain either picking his head, or crying or asleep in his bed.

I just couldn’t do it. I had to step back a way. I am struggling with the continuing of writing my two books. I wrote a new chapter to one of my books today, which by the way I have finally titled. I am on chapter 21, which I published today. It is now called A View Backwards.

It took me a large amount of time to write it. It isn’t that exciting of a chapter but my mind kept drifting elsewhere.When I completed the chapter, I made myself leave my four walls. I just got in my car and drove. I wound up going to some garage sales. I  found one thing in three sales. It was a bed tray or you may call it a food tray that will go over Al’s lap while he is in bed. He can use it to prop his Bible and read or eat snacks or a meal on it if he is not feeling well.

On my fourth and last trip to the sales I found two things for me. I found a Redwood chicken. I like to collect chickens and roosters. I don’t have many, but I don’t like the modern silly looking ones. I like the oldies. Then I also found a clock. This clock took me back to six years ago. I was caring for a man and wife. I took care of them for three years, or maybe it was five in total, I can’t remember.

Anyways, he had this clock that hung above his television. I always admired it and the Mr. and I used to talk about it quite often. I am sure his is much older than mine and I believe his is a little bigger. I assume one of his children have it now as both of these dear people passed a way.

I prayed like a silly school girl that it was in my price range and that it worked. I was like a kid in a candy store, slobbering all over myself. I walked up to it ever so slowly. Afraid that it was out of my reach.

I touched it. It was a nice heavy clock compared to today’s clocks. I picked it  up and ran my hands over the inlay and the mahogany. It felt so nice, like it belonged to me. He and I became friends instantly. I couldn’t put it down.

I asked the lady how much it was, and I thought my legs immediately turned to jelly. I could feel them wobbling as I knew I could afford it. I watched her gently take it in her arms and plug it in. Oh my, it worked also. I told her I would take it. I paid and smiled all the way to my car, like two old buddies had just reunited.

While I was sitting in the car admiring my prize I thought back to the man I had taken care of and how proud he was of this same clock. He had been in the war also. Each Memorial Day I took him to the cemetery to reunite with his friends.

He and I spent hours on those special weekends talking about his war days. I thought ahead to where Al is sitting right now and wondered  how many of those empty faces are also veterans.

The stories that are locked inside their head would give me goose bumps when I think of what they did to save us. Maybe if we just took the time and visited these lonely veterans, we could relive some of what they went through.

There are shelves of books and broken chapters hidden deep inside. Willing to come out if only given the chance. My first husband served in the last few years of the Vietnam War. It seemed to me that it was more like a party for him instead of a war. The bad days were over, and life settled down. He was a policeman over in Stuttgart Germany, where I had the opportunity to live many years ago.

My second husband had no heirs so he didn’t go. My father had us children so he was never called. Al had no heirs so he never received the letter either. But thanks to the elderly I cared for so many years, I had a front row seat and got to see the movie in full living color.

God bless our Veterans. They are our heroes. So why do so many people shove them to the back corners of life and watch while they slowly sit in their wheelchairs waiting to die. Waiting for someone to say hello. Waiting, just waiting.

I Cleaned House, No Not My House!


US Navy 110308-N-7491B-039 Surgical technician...

Today I cleaned house. Oh no, not here. I already did my Spring cleaning. I mean Al‘s room. I took in some pairs of shorts and tank tops. He saw me when I entered but I didn’t get a smile or anything for a few moments.

Then he started crying. It was obvious that he had been upset long before I arrived. I put down my goodie bag and sat down beside him to find out what was on his mind. What was the culprit you ask? Good question and I am going to spill the beans right now. Wetting, yep that’s it, wetting his briefs.

For some reason, which I will blame Parkinson’s Disease this past week there has been a change in the bladder area. He was so upset and embarrassed because he had wet himself.

I tried using different reasons as to why this was happening. I was hoping he would reach out and grab one of them but he didn’t. It seems what is happening is that the knowledge of realizing he has to go pee comes late in the connection of the brain.

He realizes he has to go and either he doesn’t remember to put his light on, or he puts the light on and no staff arrive or he just gets late notice that he has to go. I do know that he was sitting there waiting to be changed but there was no call light on.

The light bulb inside Al’s head didn’t go off so I reminded him to push the button. I looked at his clock and it was six minutes until help arrived but it was too late. This in turn brought about more tears.

This is  happening about every time now when he feels the urge to go potty. I think it is a combination like picking the Power Ball numbers. A little Parkinson’s, a little more PD for not using the call light, and a little bit of no staff.

I finally think I found a reason he was able to grasp. I explained that many of his new friends at the Day Program wore briefs and had accidents too. I told him that no one knew they were wearing briefs as it was a hush- hush thing.  I asked him if he knew this information and he said no.

I seemed to be able to help a little so I went about tearing into his closet. I pulled out all long sleeve shirts and heavy-duty pants. I replaced them with the clothes I brought. I took  his winter coats and replaced those with a light-weight Spring jacket. I washed down his bed side table and placed the tower fan for him. Yes, he is still sweating a lot. I learned the heart is causing this excessive sweating.

Without him realizing it I made a trash pile of old newspapers back from when he first went there to live. I found brown paper sacks where he had won goodies at Bingo and they were full of empty wrappers and even one nasty looking banana peel. Yuck!

It was time for lunch then. I had called in and ordered a lunch this morning so we ate together instead of me watching him eat and wishing I was. He did pretty good with lunch and didn’t make too much of a mess for this meal.

His driver appeared and was waiting so she could take him to Day Program for a couple of hours. I pushed him back to his room. He had to go potty he said but he had already wet down in the lunch room he admitted. This caused more tears and again more explanations.

I put the light on for him and seven minutes later someone came in. When help finally arrived I asked her to change his heavy pants into something more appropriate for the weather. He chose shorts over thinner pants. She changed him and he and his driver were off with him in tears, still embarrassed about his accident.

I am glad he was able to go. Hopefully his mind was more occupied with friends than wetting. I was told that I needed to take his two walkers home. The doctors orders had come in and there is to be no more walking and he needs to be pushed everywhere in order to save his heart.

I looked like Santa Clause when I left. The car was stuffed with two walkers and a big trash bag full of winter clothes. I finally got the car packed down and headed for home. When I got  inside the phone was ringing. It was the facility.

There was an appointment waiting for Al to have a scope done for his swallowing issues in the esophagus. I am not sure if I made the right decision or not but I have not heard Al complaining much about swallowing since they changed his diet to puree meat and mechanical soft. I also now know that his heart is working over-time and has been damaged.

The doctors would put him to sleep to look down his throat and I chose not to put him through another procedure at this time. I called the number I was given and spoke to the nurse about my concerns. I asked her for her advice. She explained that at any time if things looked worse we could reschedule.

I felt comfortable with this. He wasn’t going to be turned down for an appointment at a later date, we were just putting it on hold until things progressed more in that area.

I felt good about today’s visit. I cleaned house for him. I tried my best to get him to understand the complications of PD and wetting one’s self. Lastly, he was out on an outing. I can tell he does not feel well but at least he was talking to me and he ate all his lunch today.

Al Fell Again and Still I Was Not Called Right A Way


The Cleanest Floor You Will Ever See

I haven’t posted since earlier this morning for two reasons, maybe I should say three. 1. To give you all a break from my frequent posting. (I’m sorry, I can’t help myself. I guess I am a chatterbox.)

2. I did some remodeling in my living room and that took the bigger part of the day.

3. I received a phone call this morning from a nurse at Al‘s facility. This call has been on my mind all day. Let me tell you something, there is no rest on the weekends for the wicked. Except I am not wicked.

At 1am in the morning someone noticed Al was not in his bed. They went to his bathroom and he was on the floor. The report was that he was on hands and knees so they didn’t consider this a true fall. They said he was fine. She told me he had a small rug burn on him.

I am thinking small as in the small bruises that he received two weekends ago when he fell. Those bruises were the size of peaches. I kept fussing with myself whether to go in or not to see him. I was wrapped up in my home project and they told me he was fine.

I did not end up going but there is part of me that wishes I did. Tomorrow I will be in there for sure. The nurse told me that Al got rude with her. I hear this word quite often, rude. Al’s mood and personality has seemed to change these past weeks. He smarts off they say. He is rude I hear from them.

I called a good friend of mine who has a family member who has Parkinson’s farther along than even Al. I asked her if this could happen, the personality change. She said absolutely yes. Caused from PDD, Parkinson’s Disease and Dementia.

She said that he may have said it and then possible later he wouldn’t even remember it. I know different times I have scolded him for his rudeness and he starts crying immediately stating he never said anything like that at all. I back off because I have no proof one way or another.

The strange thing to me about the call is I don’t like being called 8 hours after the fact. I have told them repeatedly to call me as soon as they know he is stable. I don’t give a hoot if it is in the wee hours of the morning or not. I want to be notified. I want the choice to either go in or not to check it out. This is not the first time this has happened.

His last fall they told me almost 48 hours later. The other thing that bugs me is how in the world did he get a rug burn? The only rug or carpet in the whole building is in the hall. This has me puzzled if he was on his hands and knees. Did he fall and was trying to get up? Did he go head first like he usually does? But still, how did a burn come on him.

The nurse told me that he told her he wasn’t going to  use his call light anymore because he waits so long for staff to help him that he pees his pants, and he gets very embarrassed when he wets himself. The wetting himself is happening more and more often. I don’t think it has anything to do with Al holding it or not. I think it is the PD.

I have asked before about putting a Bed Alarm on his bed and his recliner. They declined my suggestion stating Al doesn’t want it. They think he will become agitated and cause more rudeness or attitude for them. I say get the alarms and use it. The loud noise may scare him enough and remind him to put the call light on. He does forget to use the light. This has been an ongoing issue for some time.

I asked his neurologist about it last week and he said Al doesn’t want to fall intentionally. His Dementia is causing him to forget. In Al’s mind he just assumes he can walk so he gets up and tries.

Monday morning first thing, I am calling Al’s doctor and telling him about the falls that are happening more and more. I am going to ask him to write a doctor’s order for bed alarms. I have no doubt he will do this for me and Al’s safety.

Why did they wait so long to let me know…………Sorry friends, I am still upset over this. Tomorrow a new day, a new challenge, and a promise of hope.