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 Wish I Was A Robot
As you know from my post this morning today has not been one of Al’s good days. Moving to the noon…
As you know from my post this morning today has not been one of Al’s good days. Moving to the noon hour I met the Hospice nurse at Al’s Day Program and we both went to see Al. He was no better. I would say he was worse because he was crying.
The nurse tried to talk to him but he could not be understood. His blood pressure was on the high side but this was attributed to his being so emotional.
He was on a high pain level and had already been given his pain medication. The nurse gave it to him again and an anxiety pill. I hope it worked because when she and I left he was still not good.
I tried to get him to stay home but he didn’t want to. The nurse told me it was time to start speaking for him. The Hospice doctor had previously stated that Al would go down faster if he remained going to the Day Program and Al was explained this.
He wants to socialize so bad he is willing to risk his life; but there is a part of me that wonders if he really understands what he is doing to himself being mentally challenged.
The nurse saw me holding back with my answer. I am sorry it is so hard to take a way from him what he wants so bad. This is all that he has left; his Day Program; at least in his eyes.
I know that Al has bad and good days, and I see the bad days slipping in more and more. The nurse told me Al was about bed-bound ready. This threw me back. Am I that naive? Do I not want to recognize he is so ill? Maybe I carry more hope than I should.
To take a way from him made me start to cry. The nurse took over which I guess was a good thing. Starting next Monday, Wednesday and Fridays Al will not be picked up until 10:40 am instead of 8:45 because of a new shower gal. So what the nurse did was decided for him to start staying home Tuesdays and Thursdays all together.
I think from what she said she is going to have the gentleman who is the Social Service worker with Hospice tell Al that he needs to cut his days down. She thinks him hearing the news from a guy will go over better.
I wish I was a robot, no heart, no feelings, no nothing. There are live people walking around like that but I am not one of them. To me, this is one more step towards Al’s end of life. I admit his body can’t take it. The bus ride, pretty much being awake all day, but the flip side is Al’s livelihood, what’s left, bed and TV and the rotten M.S.A.
and a little bit of Day Program.
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,…
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
Not Again, So Soon?
Well here it is. That time again, the day I dreaded. Al’s tremors and heavy sweating are back. Al…
Daily Prompt; Groundhog Day
http://dailypost.wordpress.com/2013/09/01/daily-prompt-repetition/, DP, Daily Prompt
Well here it is. That time again, the day I dreaded. Al’s tremors and heavy sweating are back. Al is crying saying ” the medication didn’t last long did it? I am ready to die. I accept and I want to die.”
I wonder if he is reacting to me saying yes against my better judgement on going to the day program. Although that was Friday and today is Sunday.
He woke up complaining of tingling in his arm. I don’t think it is serious. I believe he may have slept on it. It was not working for a while but it is now.
He ate breakfast but refused lunch. He has been in bed all day. Refusing to get up. The Hospice nurse is on her way.
You all say I have strength. Well the well is dry, and the mind is tired. The body is frustrated. Let’s hope the nurse has something to say.
http://dailypost.wordpress.com/2013/09/01/daily-prompt-repetition/, DP, Daily Prompt
In the comedy “Groundhog Day” Bill Murray experienced the same day again and again, stuck in a time loop until he got the day “right.” What day would you choose to repeat until you got it right? Do you think it’s ever possible to get life “right”?
Photographers, artists, poets: show us REPETITION.
I am going to speak on this topic from experience. I am stuck with the feeling of wanting to be perfect. The perfect child, perfect sister, perfect wife. The house must be perfect.
It sounds crazy when I sit here and read it back. I look in the mirror at my reflection and I can definitely see there is no perfect face looking back. I give very little to myself. I cut my hair shut so I don’t have to mess with it.
I used to wear make-up but when I think about it the reasons were for dating or going out with my husband. Now that I do neither of these, I guess I don’t care.
I can see my problem clearly but I don’t know how to fix it. In order for me to fix myself I need to be accepted first.
Acceptance that I needed and lusted after when I was a kid didn’t come. A broken marriage twice. My kids are great but it isn’t the relationship I so wanted and dreamed about. I wanted phone calls, home visits, get togethers and it isn’t there or barely there.
I work so darn hard at proving I am a worthy person I forget or distract my thoughts today a way from me. I figure I failed, so why bother.
I place all of my energy in caring for others. I get a satisfaction from this. It makes me feel worthy and this enables me to keep moving forward each day.
I don’t know how to stop it. I don’t know how to look in the mirror and smile back at myself. I don’t know how to accept my body for what it really is and not what the magazines say it should be.
I see wrinkles appearing and have a huge fear of death. It doesn’t matter that I get to go to heaven, I am still scared.
Dealing with Al‘s death approaching I heard him tell me Friday that he is ready to go. Will I get to that spot too? Will I feel comfortable in my own skin to ever be as bold as he is? Facing the stages of death has been a learning experience for me.
I see what Al struggles through with thoughts of the unknown. I would think this would make me stronger. Maybe it does but not in the right areas.
I have a lot of fixing up to do and time is running out. We never know our day of final breathing will be and I know in age I am getting older by the year. So many things I can not control.
Cleaning my house trying to make it spotless will never happen. We live within these walls. I can clean and go back and clean and nothing changes. It will be dirty again in no time at all.
I am really trying to change this. I haven’t swept for two days. I only dusted once this week. These are major changes for me and a real challenge to accomplish.
So there is no day of the week that I will be perfect. God made me and he knew from the beginning I would never be perfect. So why keep beating myself up for a goal that will never happen.
What I need to do and am trying to do is accept that I am who I am. Period, no questions asked. Life sure would be a lot easier and probably calmer.
I would say that I am a diamond in the rough. I can shine through. I am a little rough around the edges. But I need some extra polishing.
Who I am 