I Got Sleep!!!!!
I got six hours of sleep last night. Everyone clap their hands. Alslept the best last night of the…
I got six hours of sleep last night. Everyone clap their hands. Al slept the best last night of the past week.
I got fresh air today. It felt wonderful. I picked up some groceries including those extra things we need for holidays. Example, paper plates, napkins. I am going to be making this one dessert for Thanksgiving, called
Caramel Apple Salad
1 (5 oz.) package Vanilla Instant Pudding dry, do not prepare
1/2 cup milk
1 (12 oz.) tub cool whip
1/2 cup caramel ice cream topping
Whisk vanilla pudding packet, 1/2 cup milk and cool whip together until well combined.
Chop up apples and Snickers.
Stir chopped apples and Snickers into pudding mixture.
Place in a large bowl and drizzle with caramel ice cream topping.
Chill for at least 1 hour before serving.
It is sooooooo good!!! So I bought the snickers bars today to get them out of the way. Try it! You’ll like it!
I ate lunch out and picked up Al’s medications also. I took my time. I had no meetings with Hospice. Four hours all to myself.
I am starting to feel run down but then again it is almost my sleepy time, remember? 4Pm to 5PM. Our helper will be here tonight. I was told by her boss who called today that she can do light housekeeping so I am going to ask her nicely to dust Al’s room. It is such a mess of coca cola collections, it is always on my have to list that gets saved to the last.
When I got home there was a package waiting for me. Oh how I love surprises! I hurried and opened it up and I was so pleased. Inside was 2 bracelets and 2 T-shirts from the Executive Director of M.S.A. Oh how proud I am to wear something to show Al and anyone who ask that I am an advocate of M.S.A and a cure. Here are the shirts and bracelets.
Before I close I want to thank the many friends who are requesting Al’s address. This is more than likely Al’s last Christmas, but then again I am not God. To send him a card makes me more joyful probably than he will feel. I just want to see his walls filled with colors of Christmas. Thank-you everyone. If you want to send a card, please email me at
for his address.
And I Smiled
From the moment I woke up this morning I have been the best darn actress I could; until late this…
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.
The only reason I am posting right now when I have a ton of things to do is so I can go see the Hospice nurse with a smile instead of a bitchy mouth.
Yesterday was just too awesome. Al was calm, no tears, not too many tremors. Why would I want to break the record?
Friday I needed medications from Hospice. I used to call the Triage nurse when I needed something, then Al’s Hospice nurse told me that I was getting her into trouble. I was to let her know personally when I needed meds. She even gave me her cell number which is a no-no with their staff. I guess it could cause an over-load of maybe non-emergency phone calls, and I get that.
So I called her last Friday morning. By late afternoon she hadn’t returned my call so I called the main office. I didn’t state why I needed to talk to the nurse because I didn’t want her to get in trouble. I also knew that at 5pm, the nurses do not answer their work phones. When that time of hour comes they are off the clock and on call nurses take over.
The office told me they would get a hold of her and have her call. I never got a call, not any part of the weekend. Now I am out of two very important medications. This is going to cause me grief and unneeded stress.
The office will call in an emergency supply at our local drug store here and then I will have to get out to get it, and it will be tomorrow when Al is not at Day Program so I am going to have to load him up in the car.
So this morning comes around. The shower girl calls and says she will be here at 9:30. At 10:05 when she is not here I call the office. The office says she will call the girl. I also mention that I have not heard from Al’s nurse. I also stated that I had left her a message along with the office leaving a message. I told her I usually hear from her by this time of morning. I was wondering if she knew Al was home. The office said she would call her.
Low and behold within five minutes the shower girl showed up at the door. Al was in tears. He was afraid he wasn’t going to get his shower. The girl had a trainee with her and they were laughing, but I was not.
I hate to see Al crying needlessly. It stresses me out. He has to get on the bus for day program at a specific time. The girl made a comment that she had car trouble and I said you could have called.
For me I have to make quick decisions. Although I am thrilled Al is home it doesn’t take much at all for my stress to return. Taking care of Al isn’t an easy job, especially alone. I have to decide, is anyone actually coming? Do I need to hurry and give him a shower myself? Should I call the bus company and cancel? Should I take him in myself after they arrive?
So I guess I was edgy. While they are laughing I am almost in tears like Al. Then the nurse calls with a bright Good Morning. She ask me how I am and I say alright. I tell her I am stressed right now but I will calm down.
She ask why am I so stressed this time of day and I explain the shower deal. She proceeds to explain that they give a time frame but they can’t always be on the dot. Maybe they run into crisis with a patient before Al.
I said I totally understood and explained how it puts me in a situation of feeling like I don’t know which way to go and I explained the process of the bus situation and all that I said above.
She became silent and then I decided to talk to her in person about the phone call I didn’t receive last Friday. I am patient, I understand that Al is not their only patient. But we are talking about pain medications that can not be stopped abruptly. We are talking about how I am now going to have to load Al up in the car to go to the drug store to get just one to tide us over.
All Al’s medications paid by Hospice come via UPS or Fed Ex. So now I have said it all. I feel better. I can go in and smile, but I wish I could get these people to understand the caregiver and patients side also. Life doesn’t always flow around the staff.
A Seed Was Planted
I started my day off pretty good but as it went on I became more tired, sleepy, worn out and…
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 star http://youtu.be/EUlJsbIXsNo I have to change things around in his room.
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. 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
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.
This has enabled him to eat and drink by himself. His chatter is constant and he smiles more. I think he has more pride in the fact he can do a few things for himself again.
Not being able to feed himself I notice this is most humiliating to him. He can cry easier at meals than any other time.
I wish, let’s say I am always wanting more. I wish that he could stand longer. He can not. In fact, I think he can stand less. The new medication has helped in the area of tremors and also in less sweating.
He sweats when he has to stand to be changed or transferred. His labored breathing is still heard when he has body activity. The side effects that I think are from the medication are more confusion. He is sleepy more often than not. He stutters quite a bit now, but at least, thank God his tremors have lessened.
All of you that have prayed over Al for so many months, God has been listening and has answered. I will not get my hopes super high. I realize that medications only last so long before the body gets immune to them. I will keep my hope at bay and within reason. Sort of like that game at the fair where you ring the bell with the big pallet. Oh, it is called test your strength. I have never played it. I don’t want to have some gadget tell me I am weaker than I think. Here is a video of the game being played I am talking about.
Have you ever seen hands tremoring so bad they can’t be used? Here is a tiny video of this happening. This is what Al’s hands were doing until this week.
So all I wish for now is the medication to last for a while before we have to start increases. I am afraid if there is an increase Al will end up being bed bound.
I trained someone this morning for the coming Wednesday. I want to attend a very important auction and I could not take him. I felt like a real teacher. This will be Al’s first time staying with a caregiver in his position he is in now. She is very nice. Al asked all sorts of questions. I could tell he was not as much interested in who she was about but if I was coming back.
So thank-you everyone for the constant prayers. I really appreciate them.