The Iron Skillet Feeling

This morning has been terrible. I woke up to Al being awake. He had, had a BM first off and was complaining about this. I cleaned him up and wondered why he is having these so often, when he never used to even go by himself without medication.

He was crabby, very crabby. He was complaining about his arm, his butt and his ear. I checked his ear and it was bleeding. Just yesterday it was completely healed. Now it was crusty and white illness was draining from inside his ear.

I doctored it the best way I know how. He had a temperature of 104.2. I immediately gave him his medication. He was stuttering and I couldn’t hear a word he was trying to say without playing the guessing game, which I did.

When I watched his lips I realized they were not moving. I asked him to  open his mouth for me and it looked like a giant spider web. The infection was inside his mouth and it was gluing his lips together.

Once again I swabbed his mouth to allow his lips to move. His eyes were draining. He had a sore on  his buttocks. His one arm was slightly covered by a throw blanket and he was complaining about this. I uncovered it. He wanted the fan on so I turned it on low.

He wanted breakfast so I gave him some pudding and he ate two bites and wanted no more. I think Al is so miserable that he doesn’t have any choice but to complain. He asked why there is no nurse here.

I told him it wasn’t her day to come. He asked where staff was and I said we don’t have much staff here any longer and that he would have to learn to be content with me more often.

He asked why no one wanted to come help me and I had nothing to say. I wanted to pipe up with because you and I have leprosy, but I kept my big mouth shut. I got a call from the caregiver saying the two bosses want to come over today and shadow or train watching us take care of Al.

Now here I got a little snotty to myself I guess. For one, these two bosses are never going to come here and work. They are office people and have their own responsibilities. For another reason, these are the two that sprang the unannounced visit the other day.

I told staff I don’t give a hoot. It is a bad morning. I feel like I am going to have a panic attack. Al is in a crabby mood. Tell them I don’t care if they come, and if they don’t come, it’s alright too.

A thought entered my mine at that very moment. I can’t do this anymore. I am going to be forced to place Al in a nursing home. He is miserable. Then I started fighting, trying to stay strong.

I had been practically begging Hospice to let me give Al a special cream for extreme pain. They have continued to tell me no. Letting me know that most care givers don’t apply it right. I told her I had used it with other patients and was very familiar with it. She ignored my plea.

I decided to call  Hospice after leaving Al’s room. There was not one nurse available. I ended up being forwarded to the administrator nurse where I got a voice recording. She did call back and pretty much said, ” I will give his primary nurse a call. She is off today, but she is familiar with his case. I just think his illness is too rare and I can’t help you.”

Wow, I thought, the head hauncho doesn’t even know how to handle Al’s MSA, this makes me feel real comfy. This regular nurse informed me yesterday when she was here that she wasn’t going to be coming tomorrow either; that a replacement would be sent. This seems to be a regular thing week after week. She is rarely here on Fridays. I feel like it has something to do with the fact I bitched about wanting a Hospice visit three times a week instead of two.

She called me about twenty minutes later and insisted that I give him this one medication she had brought. I fought it for two reasons. One, it makes him wired and he doesn’t sleep. Two, I am the only care giver today minus two hours and I didn’t want to have to fight this whole, ugly mess all day.

I asked her to please get me the cream. She said no. She said Al was too wet and too oily. I said, ” What? He hasn’t sweated for a couple of months or so.” She then said, ” His skin is too oily, so the answer is no.” She said his Bm’s are from his illness, just part of the process. She said there is nothing more to be done about his ear.

I felt defeated, slammed to the floor, helpless with nowhere to turn. Here I have a brother who is miserable as all get out. A high fever I am fighting. His bed sores, his body locking in place. His ear bleeding. His mouth a cob web, and I get two hours of staff help so Al can have his bath, and not one damn nurse will come out nor help me.

I am so sorry my friends. I just feel like I have been beat down with an iron skillet and I can see nothing more anymore but black all around me and huge gobs of gloom.

iron skillet

35 thoughts on “The Iron Skillet Feeling

  1. Hugs, I send what strength I have. It still amazes me how people in a profession that are assigned to assist have no idea how to do their job without being shown by a family member.


  2. I just found your blog. You write very well. You are a special person to be giving your brother as good of care as you are. I will be back. I used to be a nurse besides many other things. I invite you to visit my blog. Hugs, Barbara


  3. Hugs and what you re feeling is normal for the situation you re in watching Al suffer and wanting help for him but having doors shut in your face.
    This is frustrating and I face this same frustration at times dealing with hubbys medical team.
    It is from being overwhelmed watching your loved one being in the condition they are in, and not being able to get the help they need.
    Does he have a Dr you can call?
    Yes it is going over hospice head but they work for you. You do not work for them.
    They act like Gods and the truth is they are your employee.
    I think we forget that sometimes and feel overwhelmed by the power we give them, but the truth is they work for us.
    You are in my prayers sweetie and am sending tons of hugs your way.


    • I have never met the doctor that is over Al. Our family doctor backed out pretty much when Hospice and the stronger medications were introduced. I know her name and I can call. Thanks for the idea Granny. You certainly know how I am feeling


  4. You are the light in that very dark place my sister. The devil is throwing all he has at you and Al and tries to make it so terrible so that he can put out your light. But he will not win! We, your family in Christ, rebuke his efforts. He is a noisy one, a prowling lion seeking to destroy. But the warriors of the Lord will triumph. Al and you are mighty, therefore you will be targeted for unusual persecution. Hold onto God, hold onto us. Pray without ceasing. While the path is hard and unpleasant, the reward is great! Hugs…


  5. Terry get on the phone to his Doctor…no one and I mean no one should be leaving you with no care at this time in Als illness. What do they mean they can do nothing for his skin THAT IS THIER JOB and is the nurse his doctor …no she has no right or credentials to deny him the meds/cream etc. When those two uppity ups come today you let them know in no uncertain terms how wrong what they are doing to your brother is. They are there to help and provide care in his last days in his home where he wants to be, do not let them take him if that is not what you want. Because I will tell you that is what the visit is about. Don’t be bullied but call that dr tell him what is going on and you will have his response as your ammunition with the bosses. GAH I am so angry for you!


    • Oh thank you for the special prayer. I don’t understand why they don’t listen or why everything is starting to fall apart when Al and I need the help most of all


  6. I tend to agree with the comment regarding contacting Al’s actual Doctor… You are dealing with hospice, and nurses and they have knowledge but I don’t feel they have the right to allow or deny the use of anything that would help Al or for that matter ‘YOU’ . Those who have nothing invested emotionally can say this or that without compunction and it doesn’t affect them whatsoever.. They go home and dismiss it from their thoughts leaving you Al’s ‘family’ to just accept what they have decided…. This is unacceptable and a doctor should be advised just what is going on and how in distress Al is and he and you should be give whatever will help in any way to make whatever days he has left the least uncomfortable and free from pain that he can be…. I am so angry… ‘be angry an sin not’ …I believe justifiable anger… Diane


  7. terry there are no words for how my heart breaks for you. i can’t even begin to imagine how devastated you must be feeling. please don’t give up hope, you have been down before and things got better. i don’t know the answers and i won’t pretend to know what you are going through, i will tell you that you are loved and i so wished there was something i could do to make things easier for you both.


    • Things are tough and tougher even today. I feel like he is on his journey but it is a slow one. I hope you are doing ok today my friend. I think of you so often. Hugs


  8. Terry, I know from my Mother’s recent Hospice Care, that the Hospice Nurses consult with a doctor on a regular basis, and anytime there is a change in the patient’s condition. I am familiar with the pain cream and know that it is only effective if the patient’s circulation is good and the cream can be absorbed through their skin. Maybe they know that the oral meds will be more effective for him. We had a caregive come part of the day so I could work, and she was great. Why are you having trouble keeping a caregiver? Does Al get some help with paying for a caregiver? Al’s disease is horrible, and maybe there are just no perfect answers. Sometimes we just have to accept that we do all we can, but things are still just ugly and there is no way to make them nice. You have been a dedicated caregiver for a long time. If you cannot keep a caregiver, and cannot do it on your own, then it seems that it may be time to look at another option. Consider what is best for you and for Al to get the best full time care that he can have. My prayer is that if he cannot recover, that he passes on to a place of peace soon. Love and prayers to both of you.


    • Thank you. I did have another caregiver but things didn’t work out. Today he has taken a turn for the worse. i hope God takes him soon for his benefit. He has suffered long enough in my opinion


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