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Caregiver "Patient"


arogers

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A week ago today Bill came down with a cold. It has been a blinger. A real old-fashioned head cold. No temp, blood sugars stable - just a head full of gunk. He loves to "share" my pillow - which most of the time I find endearing. However, when the cold arrived and the germs started their march toward me during one of his "cuddling" episodes I just about lost it. I knew, however, that the dirty deed had been done just by being in the bed next to him. Of course, he was quick to remind me of the same.

 

Sure enough, I got through Thanksgiving AND Black Friday. Saturday I felt like a Mac truck had taken aim and hit its target - that would be me. I know pretty much immediately whether I've caught a cold or this minor inconvenience is in for the long haul. It's something about my ears. Not a real earache, but I can feel something happening there that isn't normal. Maybe it's because when I was 7 and was supposed to have my tonsils out I never had a "clear throat" long enough to have it done.

 

This is the first time since Bill has had his strokes that I have been this ill. I don't even realize all that I do for him - until I need to do it and I can hardly hold my head up. It really is like having a small child in an adult's body. Even though he has a desire, he just doesn't have the cognitive ability to make a pot of coffee, or even heat a pan of soup or make a sandwich.

 

Anyway, Monday I called the doctory. I called Bill's doctor since I THOUGHT he knew me. My doctor left the practice last spring and I've only seen his replacement once - to see about having the "bumps" removed from my scalp. Since that trip ended with a visit to a plastic surgeon, I didn't think a phone call for a Z-pack to be called in would be successful. Well, the "triage" nurse called me back. Seems I hadn't been "seen" by the doctor there. Was I Ann or Anna? Nope, sorry Dr. S........ wouldn't be able to help me. He didn't know me.

 

Next stop, I called Leslie - my former Dr's nurse, who now assists the new doctor. I described my symptoms - low grade feaver, gunky nose, gunky cough....typical for URI/bronchitis. Call came back - she was so sorry, but I would have to come in. My response - I spend all my time caring for my husband, I am too sick to get myself ready to come in, let alone get him ready and the doctor won't prescribe a z-pack because she needs to take my temp, tap on my face and listen to my lungs in order to announce I have an URI and bronchitic???? Leslie - who knows me and knows Bill's condition probably better than anyone there was truly mortified. She said, Ann, I'll call you back. Somehow she had convinced the doctor to call in the script. Of course, with it came the admonition that she would do it only this one time...Seems like she could look back on my history and see that I'm NOT at their doorstep every month or so requesting drugs...

 

I have to admit. This is the first time in ages that I have really been the guest of honor at a pity party. I do find it interesting. How quickly I became resentful of the medical community who knows me so well as the voice of my husband because I am just that. I am his caregiver. I am not a person or a patient, I am his caregiver. I will be talking with his doctor next week about this situation - along with the eob stating that his entire hospital stay last time has been denied to the tune of about $18,000 because the charting was apparently not done correctly. There comes a time in all this that reality sinks in. Maybe it's burn out. Maybe it's not feeling well. Whatever it its, I am one person who has reached the end of the invisible caregiver road.

 

Now - future contingency plan? I've thought about it. I got through this. I'll get through it again. Something worse? 911 for me and him. His family is great about visiting him when he's in the hospital. His mother always says "I'll do anything I CAN do" - which means she will call to see how he is because at 81 she isn't physically able to do much except offer him sweets and soda pop. His brother is a teacher with his own set of issues...and our friends all have jobs! I'm going to talk with the doctor next week and make a follow-up visit with "my" doctor to have her look at me to see that I'm ok and I'm going to lay it on the line - I need some support from the medical team I've used for over two years. Yes, I can place myself in their position - but I need some reciprocation. I don't know of any caregiver who is a hypochondriac. We don't have time to be!!! When we are sick - we are sick....and to call a doctor for ourselves means we are REALLY sick I believe. When will those telephones with the camera be widely used???

 

OK - so we are better, and I've ranted...now I REALLY feel good!

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Ann,

 

I know what you mean about it being hard to explain your caregiver role to your doctor and how your husband fits into every aspect of what you can do for yourself. I solved that problem---after getting frustrated one too many times---by switching doctors. Now Don and I have the same internist and it works really well that way. I know that won't work for you because Bill goes to the VA but I mention it for others who may be struggling with this problem.

 

I wish I could bring you some soup and tea!!!! Feel better soon.

 

Jean

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Thanks Jean,

 

It did work well before our PCP decided he'd had enough of insurance and went to work as Medical Director for a health organization. Now Bill's PCP is a gerintologist with the same practice and mine is the "newbie" who replaced our other doc. We don't use the VA for his primary care since it takes so long to get there and his health is so fragile. The VA isn't happy, but I take all his medical records when we go so that his "doc" there will acknowledge that I know what is happening. He still doesn't trust any tests or records from those horrible "outside" doctors.

 

Yes, it was easier when we had the same doc...and I have made the comment that I may need to find another practice if I can't come to some understanding that I exist at our current one - too many patients, too little time - socialized medicine without the financial benefits. Enough of my :Tantrum: :Tantrum: !!

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Ann

 

As part of my emergency planning I went to "our" doctor and got bloodwork etc done. Not because I was sick but because wanted him to know what my "normal" readings are. Now I have it done every six months. I only go to him as a patient about every second winter for bronchitis so he had no clue as to what my general health was like as he is really Ray's doctor and I just go to him when I am really sick.

 

You might be able ensure that the "who's next in line" plan is operating even if it means you ring Trey, Trey rings Bill's doctor etc if you do not feel able to wait in line to talk to the doctor etc. We all need a back-up plan. I take the point about Bill's Mum being willing but not able to do all she would like to do for you.

 

While saying there is no-one else is a reality for some people that is an isolation that shouldn't be part of life in a society like ours, there is always a neighbour or friend who can speak on our behalf if needed. I know because I am that person for three widowed people who are childless and have relatives who live far away. I even organised the funeral for one of them.

 

Commisserations on your body being under attack from this "whatever-it-is" and hope you get well real soon.

 

Sue. :friends:

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Sue,

 

You are so right about the isolation thing. I am sure a big part of it is pride - not wanting to "impose" on anybody else. Also, this bug really seems to be wicked, and I haven't wanted to expose anybody else to it.

 

Last night Bill's mom called and said she guessed she'd "caught whatever you and Bill have" when she was here for Thanksgiving. Of course, she was coughing the entire time and told me Sunday she had "almost" decided to stay home from church because she was coughing so badly, but she'd taken some medicine and it seemed to help. She only had one coughing spell while she was in church.

 

Actually, Bill has blood drawn tomorrow morning and I intend to meet with my doctor for a follow-up visit. That way she may get to know me a little better.

 

Thanks for the reminder that I need to be proactive not reactive!!

 

Love,

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Hi Annie, I was a medical assistant.. I know how you feel as a patient, and also know how the Dr's are.. mainly because of Insurance companies. Companies do come in and audit medical records ...

 

I have intervened for patients I knew when a Dr was filling in for the regular Dr. once a Dr gets to know you and your situation they will usually be more understanding. The Insurance Companies and Findings on givning out antibiotics because so many were giving out at a first sneeze or a pt expected to get better with a prescription has made many more "germ" resistant (and because patients didn't finsih the whole prescrition. These are some of the reasons now Dr's want you to drag yourself in ....

 

(((((((((((HUGS))))))))) and a box of kleenex for you.. I made a big pot of home made turney noodle soup.. wish I could send you some.

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Thanks Bonnie,

 

I was aware of the problems related to antibiotics making germs more resistent - it's a frustrating situation.

 

The single most difficult thing relating to my move from Northern Michigan to Greensboro has been the health care. My first real primary care physician here was a resident who, upon graduation moved to Winston Salem. That's just too far for me to go - even though it's only about 15 miles from where I live, if I were to be hospitalized it would be in WS and that isn't realistic. My next PCP got out of patient care entirely last April - and that was a real blow to both Bill and me. Bill's current PCP is the gerentologist who called on him at the SNF last February - but he only knows me through Bill. He hardly remembers Bill from visit to visit, let alone me!!! My PCP now has only seen me a couple of times because I just don't get sick. She is new and young, and I'm sure is under a microscope at the practice so naturally she's going to be hesitant to prescribe ANYTHING without seeing me. Thankfully her assistant knows BOTH Bill and me and was able to intervene. I think I'm going to have to make it a priority to visit her in the near future!

 

Thanks for your comments, I didn't know about the insurance audits. Makes alot of sense to me now that you mention it. (As much sense as insurance companies CAN make.)

 

The virtual soup and hugs have been so much appreciated!!

 

Love,

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