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…
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…
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.
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.
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.
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?”
” 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.
Fair Day, Good Day
When Al first comes home from the Hospice House he is the best. So we take advantage of these…
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.
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.
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.
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……………………