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.

39 thoughts on “I Am Bitching

  1. Stay tuff! It takes that kind of attitude to help you get through stuff like this, so I’ve heard! I also thank you for reading some of my posts!



    • hey my friend, you have a lot of good reading. I enjoy it. Thank you for taking the time to stop by and visit. Staying tough is the way to walk through the tall grasses of life!!


      • Hey back to you! Thanks so much for the kind words. I try to find a bit of this and a bit of that for readers.

        Terry, that’s a great way to put things…”tough is the way to walk through the tall grasses of life.” Nothing can be more truthful.

        The challenges of the “everyday” can take a lot from a person. But when one of those challenges is an illness, it’s astronomically harder!

        Obviously you have put some real perspective into your situation and for that you deserve kudos! Enjoy your day,



  2. Terry, I hope you were able to get your point across to them. It is NOT too much to ask for them to keep in touch with you, especially where the medication refills are concerned.


  3. wow, all of that is just brutal to deal with Terry, you have every right to feel super stressed, there is a level of importance here that isn’t being taken care of, you have to wonder if they truly understand what that is like for you and for Al…they need to “get” that.


    • no one in the Hospice knows about M.S.A. I have had to teach them. I think they look at Al as another patient. He is, but this disease is so complex. thanks for understanding my view Carol


  4. Terry – so sorry for the heartache these people who should be helping you and Al are causing you. Feel free to bitch here! In my experience, expressing your true feelings to someone else and not to the actual offenders works better. The actual offenders usually never feel remorse. I am always here to lend an ear!


  5. Itis good to get rid of your stress, good you can with writing. It is not good if you cannot rely on people specially not your situation with Al. They do need to understand that! Glad you are smiling again and you know we always listen!


    • thanks Ute. It is hard to keep my cool when others aren’t understanding my view. And if someone is truly sorry about being late, they better not walk into my home laughing , there, I feel better now. LOL


  6. I hear you Terry. I too understand that they have to cope with multiple patients and as you and I both know taking care of my Bob and your Al can be a long drawn out process. Currently it is almost 12 noon and I still don’t have him out of bed. Just when I thought I was ready to go on to the next phase he had some other need, it was beginning to feel like it would never end. So I had to take a break – cause just before he got dressed he said he needed to go to the bathroom. Well that can take up an hour and a lot of physical labor on my part. so I’m taking a break, he needs to go before he gets dressed, but he can wait long enough for me to take a breather and I I have the strength and the right frame of mind to accomplish “bathroom” duties. So we the caretakers “Get it” when they talk about time frames – However….. Why don’t they “Get it” about our time sensitive issues??? Surely they have been around enough patients that this should not be rocket science? They should be staffed up enough to be able to work around “delays” and have an agreed upon tie frame that if they are running behind they contact you and allow you to make alternate arrangements or inform you that an alternate person will be showing up. It’s simple real;y and good manners and yes I know time can get away from them and there may be consequences for them that we are unaware of that makes them not want to cancel an appt even if they are running way behind. Sometimes it can make us feel like hostages to them and we are really the customer.

    Perhaps if we can find a way to eloquently state our position clearly and concisely and endeavor to not alienate them we can come to some sort of agreement. I’ll think on it a bit -Hugs


    • I totally agree with you. I have had comments made to me about why do I think taking care of my brother is so hard? He can stand! I always want to laugh. Stand, yes, for a few seconds. I better have brief, cloths, anything I may need right there and ready because if I don’t, down he goes. They don’t have enough help because they need the monies in their pockets worse. Our shower aid from Hospice up and quit forcing me for a week to give Al a shower. It is difficult for me who is older than Al to do a shower. It took them that long to find a replacement


  7. I don’t think anyone who has never done it really understands what it is to be the sole caregiver for a sick, incapacitated adult. You’ve said it very well, Terry, and I’m glad you got it off your chest. For now.


    • I am learning to whine on WP and keep my smile in public. This may not be the correct route to go, but it did save me from smacking the smile off that shower girls face. LOLOL


  8. What’s the phrase…don’t judge someone because you don’t know what they’re going through…or something like that. What you’re writing reminds me of it for some reason, that they shouldn’t just assume you’re good to go there or that it’s no big deal because to you, it is and should be a big deal making sure things are just right for Al. Sorry to hear it’s stressful again. Phil 4:6 is always good for times like that for me. Have a good night Terry!


    • Thanks Brian, I think I got my point across today and I even did it with a smile and acted like a lady. My mom always said you can say anything if you smile during the words. You are right, we each have views, different angles, theirs are the staff, mine is the sister and caregiver. We just have to understand each other. Hugs


  9. *hugs* complain away, you are looking after al 24/7, he is your brother and patient. I understand that completely and you handled the situation better than I would when the shower girl showed up or when the hospice nurse finally called. I agree the shower girl should have called, its a job which is a commitment. You are someone’s only way of getting clean that day. If you can’t give notice of lateness or even consider the inconvenience of being late maybe you should find another job.


  10. Laughing?! How unprofessional. If a patient (and maybe even a caregiver) are in tears or nearly so, that is not a good time to be flip and laugh as if it doesn’t matter. And yes, I agree with you that they should have called. I know they get busy and have things to do, but SO DO YOU! Your time is valuable too. And I really wish people would quit making excuses for their or their coworker’s unprofessionalism.
    Okay, now that I’ve done my own ranting, lol, I’ll just say that I realize patience is a virtue, Terry, and I realize you have to pick your battles, and I realize that stuff comes up that is beyond the Hospice people’s control, but at the same time that doesn’t mean everybody gets to walk on you and treat you like a peon.
    I do hope everything settles down and that this is all just a bad day and every thing will run smoothly from here on in, both with you and Al and also the Hospice workers.


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