Being Waited On Hand & Foot


Christmas tree 2013I have been gone most of the day. Al went to Day Program and I had to go to the doctor because last week I was outside helping with leaves and it gave me the start of an infection.

I had a little trouble getting my prescription although I get this infection every fall and spring as long as I live in Indiana. The doctor didn’t want to fork over the script because I wasn’t bad enough yet.

I explained about Al and how I could not afford to be down one day and didn’t want to wait until it got bad. Finally he gave in. I had to go to the Pharmacy and pay my monthly bill and fill the new script. I then had to stop at the camera shop as I needed a piece I didn’t have. I then definitely had to go to the grocery store as I can’t get out on weekends when Al is home.

So by the time I got home and put all the groceries a way I had a half an hour before Al was to arrive. This day went fast but yet I had that time frame for thirty minutes to do as I wished.

I was so shocked and very pleased that two ladies from M.S.A. web site, who I am honored to call my friends. Connie and Bonnie had both left me messages on Facebook and Connie even called me. They were worried about me as I hadn’t posted all day.

I didn’t mean to worry them but to be very honest except for my daughter and my best friend no one questions my where-a-bouts or calls to see if I am alright; so I was pleased as punch.

After I spoke to Connie I played around with my camera. I took a photo of our tree and then doctored it on a photo program. So here it is, my play-time project.

When Al got off the bus he didn’t want supper. I am starting to get used to those words. He wanted to nap. I imagine he was tired. He didn’t seem like he had a good time at his party but I am thinking he was just too tired to talk about it.

I changed him and put him in bed. When he gets up I will offer him supper in bed, served like a King. I will not work so hard to transfer him from bed to recliner and back any longer. I hurt my neck and back muscles because he is just too weak to help.

I think he will be alright with it. He was in bed all day yesterday after breakfast. I got him up and fed him and washed him up and then put him back in his bed. I just made sure I turned him every two hours and sat him up off and on. He got waited on hand and foot. You know, I could handle that myself for a day, being waited on hand and foot.

Quick! Where is the Straight Jacket?


I didn’t want to do anything today. I didn’t sleep well last night. Al was a wake through the night, not wanting anything really. Seeming a little confused. I am feeling guilt this morning also.

I got a call from the Hospice nurse stating Christy the regular nurse Al sees will not be here today. That the nurse last night who was here will be seeing him instead. Oh dear, what have I done, is what I was thinking.

I remember being so  upset yesterday that the Day Program has said they tried to call Christy but she never called back. I knew that there had been two occasions where I had tried to get a return call from her but nothing.

When the other nurse appeared last night I blurted it out that it wasn’t right for the only link to Christy was through her phone and the fact she doesn’t return the calls is very upsetting to me.

I just hate getting anyone in trouble period. Of course it could be that Christy was just off or ill or something. I have a bad habit of thinking the worst at times.

I looked around the house and thought the hell with it. It will still be  here later today. I am still in my house coat after taking care of Al this morning. I did get him up and he went to the kitchen table. His voice was so soft I could barely hear what he was saying. I just have having to say huh, what did you say?

He ate a smaller breakfast but he did eat. He once again said he is going to die very soon. I don’t know what it is about me that is wired wrong but I am like the person who has to know how everything works and how it fits together.

I sat down with him while he ate and asked him what makes him think he is dying. He said he just knows inside. He said he knows he is getting weaker. He said his nails are getting grayer.

I had always been concerned about his gray nails too but Hospice says it is no big deal and not to worry about it. Of course my come back in my mind is then why aren’t mine gray.

I have found myself trying to give explanations to anything. Example, he ate breakfast, even though it was small, he ate. He isn’t dying. He just doesn’t feel well. Or he is alive and well this morning, so last night, what was that all about? What did the nurse mean when she said he is declining?

I don’t see any real major changes. Yes, he is definitely weaker in every way, but that doesn’t mean he is dying. I am making myself so ill that I am constantly running to the ladies room from my nerves being infrared.

The fact is I don’t want Al to die, and on the other hand I want him to go home so he can be pain-free. I don’t know when he will leave. Al can’t possibly know when he is leaving. He just feels like it won’t be long. Maybe he is right, maybe his is wrong. Maybe he is just having a rotten day.

No one seems to know why he blacked out yesterday. No one seems to know any direct answers, and I think this is what is wrecking my emotions. Watching, listening, checking on him often.

I  hear his labored breathing. I see his hands turning white but his nails remain gray. I see him eating. I see him declining in some ways. I see me  a ball of mixed emotions. Why can’t I just settle down and accept the truth. Only God knows. I guess I don’t want any surprises?

Wow, why would I even think such a stupid thing. Hospice is here. They are only here for one reason. This is no surprise.

I better quit before one of you comes here and puts me a way for going nuts.  All I know is I love him, I see what I see. I hear what I hear and God only knows the rest. Well I have to get dressed now and straighten up the house. The phone rang and the Hospice Social Worker called and is coming over. Now what………….

stressed

One of the Hardest Things To Hear


I am not going to make this long. I will just say that Al has not felt good for a few days. In his words, he says he fills funky. He has not eaten well for a few days. Today at his Day Program he blacked out and fell forward.

The Hospice Nurse just left our house. I want to take her simple and polite words and dissect them to death but I have to remain sane. I knew something wasn’t right when she made me leave Al’s room to talk to me.

I can still hear her words exact. ” Has he been talking about dead people? Has he mentioned anything about not being here long or taking a trip? I couldn’t find a pulse but did find a weak one in his feet. He may sleep a lot now. If he doesn’t want to eat or take his medications just give him the pain ones for his labored breathing. He is declining.”

 

Dearest friends, please pray for me. For at this moment, this very second I just want to throw up.I am not sure if I can do the waiting game, the over-checking on him, the stress and worry, watching his breathing things. I need help.oct 13 14purple candlesLonely_candleBlue_candleanimated-candles1.gifcandle-animated.gifAnimatedCandleThoughtandPrayers

And I Smiled


English: A photo of a cup of coffee. Esperanto...

From the moment I woke up this morning I have been the best darn actress I could; until late this afternoon. I must have woke up on the wrong side of bed. I was pretty busy yesterday and I don’t know if age, or the over-time of caring for Al did it, but I was darn tired, but I smiled.

From the moment I made that first cup of coffee and had that one sip, Al was ringing he was ready to get up. Inside my head I was yelling, no not yet. My coffee cup isn’t empty yet, but I smiled.

Then the phone rang earlier than usual. It was the shower gal letting me know when she was coming. Looking at the clock and hearing Al, I knew it was now or never. Time to force those eyes open, get the muscles in gear, and go get him up.

He is half laying in bed. How this illness helps him do it, I don’t know, but his head was frozen in mid-air. If I tried to do that, I would have a headache for sure. Rhino, the cat hissed at me because he didn’t like it I was hovering over Al. I took a moment to sweet-talk him and then got Al up and I smiled.

I got his breakfast and then tried to take a few moments to drink my lukewarm coffee when I discovered someone had tried to look into my credit. This pissed me off. I had let others ruin my credit in the past and it took me many years to fix it and be on top again. No one was doing this to me, not on a Monday morning for sure.

The shower gal came; I smiled.  I eventually got Al on the bus and then I got some disappointing news. Nothing bad or serious but sad. That made my day just a little rougher. I was definitely on a roll of the biggest pity party in town.

Then I would mentally kick myself, reminding me I wasn’t the sick one, Al was. I would stand strong again. I bounced back and forth like a rubber ball until it was time to meet Al’s Hospice nurse late this afternoon. We saw each other at the main door and I smiled.

We talked about the gloom that lingered in Al’s room all weekend and then when she visited Al some of my mood must have rubbed off at breakfast because he also wasn’t in a good mood.

After the meeting the nurse wanted to talk to the Day Program coordinator about some new medication orders. I was sitting in the threesome listening to the conversation when I turned and looked out the tiny window in her office. There was a bush, with its bare branches starting to show, from fall being here. On top was a sparrow sitting there all by himself. He looked lonely.

I saw myself in him. I was lonely. How can I be lonely when I had a good day yesterday with family? Don’t ask me, because I don’t know. I stay so busy with Al I would think I wouldn’t have time to think about the word, but I did.

Suddenly right in the middle of the meeting the tears began to fall and soon I was weeping. Embarrassed that I was making a fool out of myself right there in my brother’s Day Program and yet not able to stop the tears.

I needed a release I think. Of course I felt more humiliated as the two of them came and patted my shoulder and said words of comfort. I dried my eyes and we said our goodbyes. I got in the car and lit  up one of my cigarettes knowing I should quit but not strong enough to do it yet.

I took off out of the parking lot and headed for the gas station. I needed milk and I knew I couldn’t leave the house tomorrow because Al will be home all day. I was thinking about how close it was to Al being brought home on the bus and I didn’t have supper prep work done.

I was about a mile from home and the car turned into a drive-thru. When I got home I had supper on the table and Al came about 15 minutes later. He was quiet and so was I. We ate, I changed him and he wanted in his recliner. I sat here at the computer with my after dinner drink; coffee, checked emails and then laid down while Al napped.

Here it is time to go to bed and now I am awake but I think once my head lays down I will have no trouble going to sleep. After all, tomorrow morning I will hear the sounds of Al wanting to get up first thing. I just hope I have time to drink that first cup of coffee first and I will smile.

I Am Doing This For Al, My Brother


Tomorrow is officially National Multiple System Atrophy, (M.S.A.) It is a day to make others aware of this rare illness. To help the ill and families get the word out that WE want and WE NEED a cure.

We all know that most likely Al won’t be able to be helped by a cure, BUT we can be very involved. We can help others not to suffer like Al has.  Me as his sister and caregiver, the M.S.A. support groups, my friends here and on Face Book; everyone is doing their part to get the word out.

Since Al won’t be able to go to Day Program tomorrow on the day of awareness he and I decided to start today. He wasn’t feeling well this morning so his photo was not taken in his purple shirt. I did my hair and am wearing purple.

I am asking all of you to go to the M.S.A. site      https://www.facebook.com/Miracles.for.MSA     and light a candle. There is a section there to place Al’s name. If you want to donate to M.S.A. in honor of Al or someone you know with this terrible disease, please do, but no pressure from me.

So here it is, our day here, starting today helping make everyone aware of M.S.A.

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