Take My Love With You When You Know It Is Time

It is almost one am and I need to get some sleep. But before I can I want to thank you for all of your support and your great friendship. I couldn’t possibly have done any of this without either one.

It has not been a good day. It seems so many changes happen and I just about can’t keep up with them they come so quickly.

Last night I recognized a certain breathing Al was doing. With prior experience taking care of patients nearing the end, the memories swiftly returned as I watched and listened to him. It didn’t stop there.

This morning when I woke him for his shower, he looked at me like he had no idea who I was or where he was. Two ladies appeared at the front door and between them and Al I sat here at my computer in awe as I was forced to hear the rude comments coming from Al’s mouth.

He was angry and mouthy. He was definitely not himself. After the shower was complete, both ladies look exhausted. I knew in that moment the showers were over. It was bed baths from now on. When they brought the topic up for the next shower day, I wasted no time in agreeing with them. I do not want these nice gals getting hurt over Al’s weakness.

Al went off to Day Program as planned but when he arrived home there was no looking up at me as he usually does. No wave from his hand. There was only nothing. The bus driver kept giving me the look as she lowered him to the snowy ground.

I could tell that she wanted to tell me something but could not because Al was right there. I wished her a good weekend and took Al inside to a nice warm living room. I quickly took his outer wear off and looked at his communication book and saw that there had been issues during the day.

The comments were Al was very weak. Two staff had tried to help him with the bathroom duty but Al’s legs didn’t move. The two could not hold up the dead weight and Al slid down to the floor, so they would not drop him.

With extra help they got him back in his chair. He has a blood mark where he was injured and a report was made on this.

I had surprised Al when I went out to get groceries and stopped at his favorite restaurant and picked up supper. I nuked the food and started to feed Al but he wanted nothing to do with it.

It seemed that he was slipping a way from me. No emotions, no movements. I called Hospice and told about the incident from Day Program. She came over and checked him out.

His blood pressure was high. His heart beat was too high. He was not well. She and I looked at each other and we both knew we could not lift him to put him in bed. She called the fire department and within minutes five fire fighters arrived.

I know this is  hard to believe but with one of the guys in charge of removing the wheelchair away once they had Al up, it took all four of the others to put him in bed. When there is dead weight involved, what they weigh in reality seems doubled.

The nurse noticed some changes in his feet. Cold and a little dark. She was so nice. She helped me get Al’s clothing off and get him changed and positioned. Not many nurses do that and I was very appreciative.

When we left his room and we were in the living room she began conversations of what to look for with Al when he is passing. She gave instructions on what to do and who to call once that time was here.

I knew in my heart that Al didn’t have much longer. She told me with the visits Al has had from heaven that I needed to tell Al to take their hand and go.

She then grabbed her things and gave me the biggest hug. I felt like all of you were a part of that hug, it was so big.

After she left I went in and sat with Al. We talked about heaven and I told him the next time he saw mom or dad or grandma to grab their hand and go. I told him he has been a real fighter in this illness. I explained that if things didn’t improve by Monday he would probably not be able to go to Day Program any longer.

I explained that he did a good job all through this and how proud I was of him. I waited and watched him as he tried hard to settle down to sleep. Rhino came in and meowed and I heard Al say ever so softly, ” I will miss you Rhino.” With that Al went to sleep.

I am not scared, and I am not ready, but I know things are going to change again. I am so thankful that I have had the chance to be with Al and that I have Rhino.

Al, I don’t know when your time is going to be, but I love you brother. Take my love with you when you decide it is time to go.

Al and Rhino, Nov 1


The Man on the Edge of his Bed

Sorry friends, that I have not chatted with you today. Here it is 7pm and I am just able to write. Al was up a lot during the night. He went to sleep about 2am and so I was able to go to bed. At 4 he was up and then continued wanting something off and on until 6:30 this morning.

I caught another hour and a half and then the care giver arrived. I was also waiting for the shower girl to arrive. I had not met this shower girl. When she came she peeked in on Al and noticed his coca cola collection and that was all it took.

The two immediately bonded. Al was not able to have a shower today. He was too sleepy and too weak. He got a nice bed bath and I heard the chatter out in the living room until she left. That felt good. I know the two enjoyed their time together.

For right now, being squeezed in on the schedule we don’t know who will end up being the regular shower girl, but I am keeping my fingers crossed it is her.

Al confided in me in the wee hours of the morning that something had happened and this is why he could not sleep. To me it was a prayer answered. To Al, it shook him up causing him to not be able to sleep.

He told me his dad had come to see him. He said dad sat on the edge of his bed and told him that he wanted to be friends with Al. I got goose bumps as I had waited for this for years.

For Al the only dad he recognized was the one who picked on him and criticized him his whole life. I explained to Al that when dad went to heaven he forgot all of the bad stuff. I had been telling Al this for sometime.

And yet if Al did see dad and talk to him, and if people really do forget the bad things, then why did he tell Al he wanted to be friends? I don’t know the answers. I just kept telling Al this was great news. Now he and mom and dad could all be happy together.

I know Al has pondered on this all day. He fought sleep. His eyes would be nearly closed and then he would force them open again. I wish he would have slept for his own sake though. He didn’t feel well. He complained and was irritable.

Al finally went to sleep this afternoon. I had to wake him up for supper. I just fed him and changed him. I am now finishing my own supper. I went in to check on Al before sitting down here to chat with you and Al through sleepy eyes told me the end is almost here. I patted his hand and said this is a good thing Al, no more pain and many days of being with mom and dad again. He then closed his eyes and went to sleep.cat


Happy Thanksgiving

Today is calm. Clouds, a dusting of white snow on the ground. Cold temperatures of 20 degrees. I have had my shower and am sitting here in my warm night-gown and fuzzy slippers. I am waiting for the phone call that will start my day.

The shower girl will be announcing what time she will be here. This fifteen to twenty minutes is almost as important to me in the mornings as talking to God is. Quietness, the sound of Rhino wanting petted and the fans running on the computer.

When that phone rings it will signal me to go get Al up. I will change his brief and assist him in a sitting up position. Then transferring him to his wheelchair and placing him in a good position at his bedside table, I will start his breakfast.

Once he has eaten, I will brush his teeth and shave him. The shower girl will arrive and do her thing, then it is getting Al ready to be bundled up to get on the bus. Already the memories of silence I heard just moments ago will fade into a puff of smoke.

I will then receive a call from the Hospice nurse telling me when she will be arriving at Al’s Day Program. I will armor myself with boots and gloves, warm up my cold car and with grocery list in hand I will once again be placed into the hustle and bustle of people in the grocery stores, all doing the same thing.

It is getting uncomfortable to be around the crowds. I think it is because I spend ninety percent of my time inside our home. After leaving the grocery store I am meeting a lady to pick up an item I purchased.

Driving home, getting the mail, carrying the groceries in and putting them a way, I will look at the clock and take notice of how much free time I have left. I will let out a sigh and grab one last cup of coffee before the glimmer of silence is gone until bedtime. You have to love Mondays. Although weekends are the same to me as most of the week days, I hear no doctors or have any meetings or big routines on the weekends. I kind of like that.

This will be a busy week for anyone celebrating Thanksgiving with families. I want to wish all of you that will be traveling a safe trip, yummy food, good conversation and a happy Thanksgiving.


I Am Bitching

I Am Bitching

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. Alwas calm, no tears, not too many tremors. Why would I want to break the…

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I Am Bitching

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.

I Took A Break

I didn’t realize the damage it was doing to me. Trying so hard to make others happy. I can’t do it, at least not every time. I didn’t feel or see what emotional draining I was experiencing until I had written the final post, claiming Al‘s wish is now dead.

After I finished, I began to shiver and then I started shaking. The tears rolled and I just felt weak all over. I instantly went to the couch and laid down but my mind was arguing with each side of my brain.

It finally dawned on me I am exhausted. Not only from learning I could not fulfill Al’s wish, but the shower gal who has been coming up and quit with no notice. Discussions with the transportation center, Hospice, and myself started immediately.

I have had to give Al his shower already this week. It isn’t that I can’t do it. It is just I am too tired to add one more chore to his list. I know you can call me wimpy or a whiner. It’s alright.

Rolling him over on his side when he naps or lays down for the night takes three big tugs because I am just too darn old and have less muscle than I used to. So physical and emotional is taking a toll. Yet I remember God won’t give me anything I can’t handle. I keep telling myself this on days like today.

Things were worked out for Al’s showers but don’t start until next Monday. He will go in a bit later M-W-F and come home the same time. The new shower girl will be here at 9am on those days.

But for now I have to give him his shower tonight and Friday night.

I laid there on the couch for a while and then the tears dried up. I got up and did something I end up doing about twice a year. I went shopping. I just had to get out of here for a while. I keep in mind when I am out what I can afford to pay when the next month’s bills come in, and I am a clearance shopper on most items.

So I went to Taco Bell and got some lunch. Al hates that place so going there is a treat for me. Then I went to the Beauty Shop and then I went to my favorite jewelry store to check out big sale items.

I lucked out. There was a special running at the Beauty Shop and a big sale going on at the Jewelry Store. This is what I did to my hair and this is what I bought to wear.

God sets the pace

For which he wants me to walk

I try to hurry up

I think I’m running a race

But then my body says

Hey you are moving too fast

Take a break, sit a spell

Breath deep and re-learn to laugh

Terry Shepherd

me, september two thousand thirteendiamond ring