Reply with quote #1
I don't recall seeing this topic out here, but here goes. I would appreciate any suggestions or help any of you could give me.
As you know, my mother has a myriad of health problems: two artificial heart valves (mitral and aortic), a stent in the LAD artery, congestive heart failure, rheumatoid and osteoarthritis, was diabetic for many years following her second mitral valve replacement in 1993 (thank heaven, she is now off the Glucophage, Glyberide, and any insulin she has been taking all that time and has basically been pronounced diabetic-free after three quarterly fasting blood sugar tests and testing her blood sugar three or four times weekly which remains normal), past colon resection for diverticulitis, mild asthma, a seizure disorder for which she takes meds, and other health problems. This spring and summer has involved at least three cardiac angiograms (all came out negative with no signs of any blockage and both artificial valves working completely fine and her own valves okay) along with hospitalizations for congestive heart failure and either high or low blood pressure and heart rate. She had cataracts removed from both eyes about three weeks apart and even had an angiogram in between both surgeries. Basically, from about April 1 of this year until now, Mom has been in and out of the hospital almost constantly for one thing or the other. If you looked at my time sheets at work, you would see approximately every other week time off to take her to a doctor's appointment, a lab appointment, to the emergency room, back to a doctor, etc. Also, except for one day this summer, I have taken approximately 14 days vacation time and personal time -- all for her and her health problems. I had a week of in June, which was used for her first cataract surgery, and only her first cataract surgery because she had to be reminded to use her drops. I took two days off the week she had the second cataract surgery because after the first I figured she had the hang of the drops schedule and should be able to deal with it pretty much herself. In between those two, like I said above, she ended up in the ER with chest pain and congestive heart failure, was admitted to the hospital, and then had another angiogram, which came up clear. This spring and summer have been a nightmare. No rest for the weary (me); that's for sure. Well, the latest episode is a real bummer. Three weeks ago tomorrow (Monday), Mom called me at work in real pain. She couldn't figure out what was wrong, but she was hurting on the left side of her back just below her bra band. This pain continued throughout the day, and she began to think she was having a heart attack. She refused to go to the hospital when I came home from work, but about 2:00 a.m. I ended up hauling her back to the emergency room with an extremely low blood pressure and pulse. She had a chest X-ray, blood work, a urine specimen, and several other tests in the ER. She was finally admitted about 5:00 a.m. and placed in a monitored room in the cardiac telemetry unit. The thought was that with the pain she was having, she might be trying to pass a kidney stone. While in the hospital, she was given a shot of Dilaudid for pain, which promptly made her sick to her stomach. She was then placed on Darvocet N for pain, and the hospital physicians began running more tests to try to confirm or rule out kidney stones. Her urine was constantly being tested, she was getting frequent blood draws, and she had a CT scan of the abdomen and pelvis, an X-ray of her ribs in case she might have fractured a rib, and other diagnostic tests. Finally, kidney stones were ruled out, nothing could be found, and she was discharged from the hospital on Wednesday afternoon and instructed to "take Tylenol if she had any pain." This is where the story gets interesting. Wednesday night she again had me up most of the night in extreme pain. I went back to work Thursday morning absolutely exhausted after telling her to "take it easy and rest." She called me about 9:00 a.m. and said the pain was back and worse than ever and that she had called her internal medicine physician, and he could see her at 11:00. He also had ordered a protime to make sure she wasn't bleeding anywhere. I left work right then and took her for the protime and then drove like a madwoman to get her across town to the doctor's office. I helped her into her hospital gown and checked her over pretty good while I was tying the strings. I saw nothing on her at all. About ten minutes later, Dr. Moore came into the room. He had printed off copies of all the reports of the tests she had been given in the hospital. He went through them one by one, handing them to me to read as he went. Not one test showed anything definitive. All the while, Mom kept complaining how much she hurt and finally said, "Dr. Moore, I'm NOT crazy. Something's wrong with me to hurt this much." He took her blood pressure in both arms, repeating what the nurse had already done. He then listened to her heart and lungs. Finally, he had her lean over and started to walk up and down her spine with his hand, pushing hard all the while. She didn't flinch and didn't make a sound. Then he pushed on the side of her back, and she about flew off the examining table. Opening the back of the hospital gown, he said, "I see some shingles here." He called me over to look at her back, and as we both stood there, shingles started popping out all over from the middle of her back, around the side, and around to the front at about her waistline. Dr. Moore told her that shingles pain is similar to a kidney stone and childbirth labor pains and that it is excruciating. He tried to talk to my mom and explain to her how to keep from giving them to anyone else because she would be contagious to anyone who hadn't had chickenpox before and had a whacked immune system. He prescribed Darvocet N for her and gave me an entire laundry list of things to get for her at the drugsture, such as a hot/ice water bottle to fill with ice chips and water to keep the itching down, calamine lotion, Aveeno bath to help control the itching, and other things. The entire time she kept repeating, "Shingles. How come I got shingles? Why do I have shingles?" She wasn't listening to a word Dr. Moore was telling her about her condition and how long it would last and what to do to help herself; she just kept ragging on about how could THIS happen to her. Well, fast-forward to today. She went back in a week after her Thursday appointment for a follow-up with Dr. Moore for the shingles. As she was still having excruciating pain, along with the Darvocet he also gave her a prescription for Lidoderm patches to be worn at night over the painful areas to control the nerve pain. Since then, she has called the doctor on call at least twice and been told that she can use 2 patches at night for 12 hours and also take extra Darvocet at night. In other words, she can cut a big patch in half and place both patches in separate areas where she's hurting, and she can also take 1 1/2 Darvocet N at bedtime and then take another Darvocet at about 12:15 to 12:30 at night. I have set her alarm for her to go off at 12:15 at night, so she wakes up and takes the Darvocet BEFORE the pain gets out of control and wakes her up. Do you think she will remember to set her alarm when she goes to bed so that she wakes up and takes the pill before all her medicine wears off? Nope. She absolutely refuses to. She had me up again last night most of the night because she "couldn't stand the pain" and also because she is now convinced that she "has cancer," not shingles. I finally had it out with her about 3:00 this morning and told her I am sick of her attitude and not tryiing to help herself at all and that she is absolutely wearing me out. I can't keep being up half the night practically every night taking care of her and walking the floor with her and continue to work at my job, which is now entering its busiest time period with one trial scheduled to start on November 5 followed right on the heels by another starting on November 13. I'm already gearing up for the first trial, and this week alone I put in 45+ hours. The next three to four weeks will be worse. Mom and I went through over five years taking care of my dad at home, who died with Alzheimer's disease on March 16. He finally spent the last two and a half years in a nursing home dementia unit before he passed away. We went through the sundowning practically every night with little to no sleep for us while he would nap all day in front of the TV set. I was working and had gone back to school to get my court reporting degree and was commuting 75 miles 2 nights a week and Saturday morning along with working full-time. I finally had to drop out of school two semesters before completing my degree because I almost had a wreck twice on Interstate 90 driving back from Chicago on a Saturday afternoon after classes because I felt asleep. This happened two Saturdays in a row, and the second Saturday that was it. I quit and never went back because I simply could not go on with a schedule like that with no rest. My dad wouldn't do anything but mess up (bowel and bladder incontinent), and we were up two to three times a night changing the sheets and pillowcases and putting him in a hot shower to rinse off. In between the bed-changing incidents, he would bang cabinets, slam doors, and turn on all the televisions in the house at ear-splitting levels just to wake us up. He wasn't tired, so we shouldn't be either. He would tell me if I was tired to just take a nap during the day, and I would be just fine. That was a joke. How was I supposed to take a nap while I was working? Half the time, I would barely get a half-hour break for lunch, let alone be able to take a nap. On the weekends, when we could have taken a nap, he wouldn't let us. If he saw me in my room sleeping, he would turn on my TV full volume and scream at me to get my "lazy a** out of bed because I was nothing but da** lazy." I can't take this anymore. I've still not recovered from all the running to and fro to the nursing home every time he fell, which became constant almost overnight. Every time he had a scratch on him, a nurse would call in the middle of the night for us to come up and see about him. The stress of it just about killed my mother and I. Plus, he would always beg to come back home, and we simply couldn't lift him or take care of him anymore. We did it until we couldn't anymore. Have any of you experienced shingles with your loved one? If so, was your person an absolute nightmare to be around with the constant complaining, whining about the pain, and refusing to do anything to make his/her situation any better? Did your person expect you to stay up and walk the floor while he/she moaned and groaned about hurting so much, and then you were to merrily head off to work the next day as if you had had a full night's sleep? How did you handle taking care of an elderly person with shingles pain? I understand much about my mother's medical conditions (I work in a law firm and peruse medical records just about all day long for medical malpractice, personal injury, and workers' compensation matters), and I was the power of attorney for healthcare for my father after he was diagnosed with Alzheimer's. I understand medicine and I know how to research conditions because I do it all day long at work and have for 22 years. What I can't handle is Mom's refusal to help herself at all and her stubborn insistence that someone (me, since I'm all there is) has to walk the floor with her at night holding her hand while she suffers through shingles. I guess I'm going to have to buy another electric alarm clock and set it for 12:15 a.m. every night to be able to get her up to take her Darvocet because she absolutely won't do it herself. I'm going to have to get up in the middle of the night to an alarm clock to give her the Darvocet and then get up at 5:00 a.m. to my own alarm to get ready for work. In my opinion, this is asking just way too much of me. She does not have dementia, I've been assured, because when she was diagnosed with a seizure disorder, she went through all sorts of tests last summer and into the springtime. No signs of dementia or Alzheimer's or anything of the sort were found, just that she has a bit of a seizure problem for which she is on meds. So I can't blame it on dementia and say she has what my father had. It's just her stubborness and general nastiness gettiing in the way. Normally, my mother is a great mom, but when she's sick or in pain, she's a tiger and impossible to deal with. I've had it. I've reached the end of my rope. Please help. Vicki
Reply with quote #2
I forgot to mention one thing. Along with the Darvocet N for pain, Mother was also given Acyclovir when the shingles were found. She started the Acyclovir (an antibiotic for herpes zoster) within two hours of the blisters first making their nasty appearance. Supposedly, this antibiotic will help prevent the prolonged nerve pain that can sometimes linger after the shingles blisters have dried up and cleared away. Since she started the meds so quickly after he blisters' appearance, she should be starting to improve. But she's not.
Reply with quote #3
'Only Daughter' geez, what a nightmare you're living. Look, I feel for your mother. I've had some friends & relatives that have had shingles & I know they are plenty painful. Probably because your mother is so stressed out that might well be why they hurt worse. Added stress or "self-stress" just makes these types of ailments worse. Maybe some Paxil or other mood leveler might help?
Or maybe she's just making it worse to keep you tied to her if she's afraid she'll be put in a NH???? You need a break & in no uncertain terms you need to tell your mother that you'll get in-home help if need be. Don't ask her permission to do this just do it. Your own health will suffer. I can never understand why they become so utterly selfish with their own children when they can dang well see how stressfull caregiving is. Even though Bubbe has Alzheimer's she can plainly see how frazzled & tired I am yet the woman can polish her jewelry for 4 hrs like a little girl but never lift a dust cloth like an adult! Arrrggghhh! She's awful when she's sick - becomes a total cry-baby & I can't stand the childish behavior so I just don't fall for it. Mostly because I'm tired of it too. So, my only (& probably not altogether good) advice is to get in-home help no matter what your mother says or move out. If you move out she'll either have to get in-home help or go to assisted-living. You, young lady, need your life back & this much your mother ows you!!!
Reply with quote #4
Sorry only daughter, this is a tough one. Anyone who had chicken pox as a child can get shingles, usually it strikes after age 50 and it can recur. The deal with Acylovir is taking it soon after first signs, not the blisers. This is what I learned when I had it. First signs are usually pain and/or itching and that can last a few days before blisters appear. It sounds like your mom had teh pain for some time before being diagnosed. Degree of pain and length can vary. I was lucky andn only had itching, but it was in my head and around one eye. Some people cannot wear clothes or lie down from the pain.
Even with drugs the duration of shingles ranges from 3 weeks to many weeks and residual minor itching can stick around for years. I know this is bad news for you, but there isn't much else you can do but keep her on the drugs and have her wear a little clothing as possible. Even light touching causes pain/itching. Believe me, it's miserable. Do some research and maybe you'll find other information, but this is what I've learned.
Reply with quote #5
My mom had shingles about 12-13 years ago on her back. She did not get the medicine in time to help. She had them for a year and couldn't wear a bra. She put some ointment called Capazin (sp?) made from chili peppers that helped a little bit. A couple of months ago my dad had shingles. I asked a pharmacist about Capazin and he didn't really recommend it. He said to use Lanacane - that did help somewhat. My mom also borrowed a TENs unit from someone and that helped slightly. Dad got the medicine in time and had a very mild case. Good luck!
Reply with quote #6
Only Daughter, Shingles can be very serious. Post herpatic neuralgia is the biggest problem. Acyclolvir, is techniquely an anti viral, not anti biotic. There is a difference in how they work. The virus will continue to run its course from the point where it is stopped. The hope is that there will not be months of agonizing shooting nerve pain after the blisters have healed. For a day or 2 the surface symptoms will progress, then stablize and healing begin.
In the meantime, acyclovir will not protect her from secondary bacterial infections. While a person does not catch shingles from a patient with shingles, if a caregiver has never had chicken pox, they may catch that. (same virus). Shingles occurs in a very high percentage of people who have had chicken pox. Anything that lowers the immune system, from a cold, to steroids, or any number of meds that reduce immunity. To prevent secondary infection, wear gloves, clean the broken skin 3x daily, apply betadine to the open skin. Trim her finger nails to the quick. If possible, let the blisters dry in fresh air. The pain is real, she is not making this up. It is also possible that your Mother didn't report this in time for antivirals to do much good. My Mom's doc said within 72 hours of the very first sign. She had a rash for 2 days before we took her in, but itching blisters and pain had not yet begun. One more day, we would have been too late. A blister had not appeared. At this point your only course is to keep her on her pain meds. Some people do need to be hospitalized. You must guard against bacterial infections as if a life depends on it because it does. Staph, strep, cellulitis, are as common as the neuralgia, in the aftermath. So sorry, and good luck.
Reply with quote #7
sorry about your mom, and that you are enduring this h*ll right along with her!! Why is she being so stubborn? I know, you don't know!!
I had shingles at a ripe young age of 42 or 43. Weak immune system. Very bizarre. I had tingling up and down my right leg. Just a little bit of itchiness. Went to Urgent Care they said "shingles!" right away. So I got the anti-biotic, had to take it every 5 hours for 10 days. Had to set my cel phone alarm to wake myself up at various parts of the night to take it. blech! BUT, I caught it in time and I was diligent, and it was not bad. They gave me a Rx for painkillers but I never had to use them.
I think the elderly get shingles much much worse, with the pain and all that. And then the potential problems down the road. Also, they seem to have it for much, much longer. The elderly father of a friend of mine got shingles, and months later he was still complaining about them.
I know this isn't helping you very much.
My mom is the same way when she is down and out. Holy cow! I never realized how bad she could act, until she had a UTI, and a blood clot giving her some problems. I sent her to ER, because she wouldn't listen to me, nor would she eat/drink etc. There is only so much you can do... you are not a full time nurse or a miracle worker! If I had ever acted that way when I was a child and sick, my mom would have never stood for it. I would have gotten a lecture, that's for sure!
anyways.. I hope you can get a break soon. Maybe your Mom should just head to the hospital for a bit, I don't know. Because you need your rest!!
Reply with quote #8
So what did your mom say when you “had it out” with her?
Did she understand that you’re exhausted and can’t keep this up?
Here’s my suggestion, and I’m actually
not being facetious, although it may sound like it: introduce your mom to the God of Wine. Many years ago I had a pinched nerve in my neck that no medication could touch. The only way I could get relief was to GET DRUNK EVERY NIGHT until my dumb-a$$ doc finally referred me for physical therapy. (God bless physical therapists!) It was the only substance that allowed me to sleep at night.
THAT being said, I personally did not feel as though I should rouse my significant other to "walk the floor" with me during those times I was in pain. My SO had a job to go to in the morning. I'm sorry your mom is in pain, but it sounds like she's being awfully selfish here.
Reply with quote #9
Ask her doctor about Neurontin (generic name is gabapentin). I have a friend who says this is the only thing that helped her pain from shingles. It starts to woirk after taking it for several days as prescribed, usually 300 mg three times daily to start.
Reply with quote #10
Thanks to all of you who responded to my post about dealing with shingles and the elderly. I took your suggestions seriously to heart and forced my mother to go back to see her internal medicine physician who diagnosed her with shingles after the hospital missed it. She returned to see him on Monday only after she again kept me up most of the night Saturday night griping, whining, and moaning about being in such pain and that she now thinks she's "got cancer" because nothing else could hurt so much. As I posted before, I finally blew up at her at about 3:00 in the morning Sunday morning and told her I wasn't going to keep putting up with her complaints and moaning and that it was time she faced up to what shingles are, listen to what her doctor told her, and accept that she will probably suffer for at least a few more weeks.
As she had told me on Friday that if she wasn't better by Monday she was going to try to get in to see her doctor again, I asked her early Monday morning if she was going to return to see Dr. Moore on Monday. Now, one of her best friends had called on Sunday evening and told me she was free on Monday and would be happy to run Mom back out to see the doctor so that I wouldn't have to AGAIN take off work for her. What was Mom's response Monday morning? No, I'm not going back to the doctor today. If I'm not better later in the week, I want to go back to the doctor on Thursday or Friday. Now, Dr. Moore's day off is either Thursday or Friday. Also, Mom had a free ride out to the doctor's office all the way across town on Monday, but her friend was not going to be available to take her Thursday or Friday. I let my temper rip and told her that I am **** sick of her attitude and thoughtlessness when she gets sick. I'm supposed to haul her butt to the ER in the middle of the night after working all day, sit with her most of the night in the ER, and then drag my tired butt off to work the next day, sit in front of a computer and a huge pile of poorly copied medical records, and work all day long just as if I'd had a full night's sleep. I told her that her selfishness and thoughtfulness were getting very annoying, let alone her rudeness and demands, and that I had had just about enough. I had listened to her moan and groan most of the weekend, let alone the past two weeks before, and I had had enough. Either she goes back to the doctor on Monday and lets her friend take her, or she can just stuff it and sit there and suffer. I am fed up with taking off work all the time to run her all the way across town to the doctor's office and having to hold on to all my personal and sick days and most of my vacation time just to take care of all of her illnesses and problems and that I hardly can take a sick day myself and end up going to work sick because all my available time is being taken up dealing with her health issues and selfishness, that she and Daddy have just about done me in with their issues. I told her it's time she starts thinking about someone else besides her precious self because I'm not 20 years old anymore, and I'm starting to wear out and wear down. The upshot of this huge argument was that she told me I was a self-centered, uncaring, rotten daughter, and I told her she was a self-serving spoiled wench of a mother who has gotten completely out of hand with her demands and that I'm going to lose my job if she doesn't stop the nonsense and start planning some of her many emergencies and doctors' appointments better when she schedules them. I also told her that from now on if one of her friends offers to take her to a doctor's appointment (and they do frequently, but she turns them down), I expect her to jump on it and take them up on the offer because I'm not going to be so available. Either she has a friend take her to some of these appointments, or she can take a taxi across town AND PAY THE BILL HERSELF because I'm not paying it. The result of this latest battle was that her friend Sally took her out to Dr. Moore's office for a 10:00 a.m. appointment on Monday. Dr. Moore pulled her off the Darvocet and placed her on Neurontin (thanks to the posters who suggested that med because it's starting to work) and also Tramadol. She's still having pain but not to the level of where it was. In fact, within 30 minutes of taking the two new meds and using a Lidoderm patch, she said the pain had reduced from a 10 on a 1-10 paiin scale down to about a 5 or 6. Within 45 minutes of taking the new meds, the pain had dropped to about a 4. Within an hour, she had fallen asleep. I set her alarm for 1:30 in the morning and placed the bottle of Tramadol next to the alarm clock on the china cabinet in the kitchen. I then went back to bed. When her alarm went off, I told her that her bottle of pills was right next to the alarm clock and to take one and then go back to bed. She actually did take it. I've been setting her alarm since, but she's getting up herself and taking her pill and then going back to bed. Oh, bliss. I just ask her if she took her pill, she says yes, and then I roll over and go back to sleep. I'm so exhausted I didn't even go to choir rehearsal at church tonight. Also, I missed church Sunday morning because I had been up with her most of the night and was too exhausted to drag my rear out of bed and crawl to the shower to get ready and be at church by 9:30 for choir rehearsal. Thanks again to all of you who posted information regarding dealing with shingles. I really appreciate all your help. Mom is doing better, and I'm now able to calm down a little. I'm just hoping to be able to get some extra rest in the coming days. My office has a trial starting on November 5 and another right after on November 13, so the overtime is going to be a nightmare. It's hard enough when I rested, let alone dealing with that when I'm so exhausted I can hardly think. Hopefully, her medications will keep working, and I can catch up on some sleep. Vicki
Reply with quote #11
To only daughter:
I also am an only daughter. My mother started with shingles the end of December. January 1 she was hospitalized with a severe urinary tract infection which may have been the stresser that brought on the shingles. Her shingles were on her head, forehead and in her eye. Her pain would get so severe that along with moaning and praying for help she would sometimes pull her hair, or hit herself in the head or scratch her head as hard as she could. After weeks of trial and error we finally hit on a regement that helped her. She has had two injections in the Ganglion?? to block pain from that side of her face. (First one didn't help at all, second one might have helped somewhat) She takes 4 Vicoden a day for pain (every 6 hours). She takes 3 Lyrica a day for nerve pain (every eight hours). She uses a Lidoderm patch - on 12 hours and off 12 hours. As long as everything is on time, she is pretty comfortable. Mom is in a nursing home now and one of the nurses there told me of someone they knew who had shingles and it drove her out of her mind. It must be just a horrible pain. When my mom was in so much pain she would sometimes get mean but mostly she just shut down. Would just sit with her eyes closed all the time and wouldn't feed herself or anything. Now that the pain is being controlled, she is starting to do some things for herself again. Just as an additional note, mom has Alzheimers. Consequently, she sometimes pulls the patch off her head because she doesn't know what it is or what it's for. Good luck, Shingles pain is really a difficult thing to deal with. Being a caregiver is a very difficult task. Trudy
Reply with quote #12
Shingles!! They are such a nightmare. My mom also had them on her face - nearly lost her eye. It was several months before she could function - she looked like an apple doll. This was before she had dementia so she was able to control herself but she was soooo miserable. My dad had shingles on his leg off and on for years. Never really horribly bad thanks goodness.
There is a shingles immunization for people 60 yeas and older. I would recommend it after seeing the suffering caused by shingles strongly
Reply with quote #13
Trudy, I see you did a real search for the topic of shingles. My Mom was very fortunate. last spring, she was 92 then, she had an odd rash begin across her "rump". Because she needs assistance each time she is in the bathroom, I actually saw it showing up before she felt it. True that is odd, must be her age, typically, I hear that itching begins before it erupts so you see it. I am only "team captain" for Mom. I am a hands on CG for about 60 hours a week, but other than that, I coordinate her other CGs. The lady coming in after me had experience in nursing homes and rehab. I asked her what she thought and she said that it was odd Mom wasn't feeling it, but it looked like shingles to her.
I called the Dr., who wanted to see her immediately. By the time we got there, a line of bumps had spread from her spine, across her hip to her crotch, and she had started to itch.. It would seem that anti-virals like acyclovir are only helpful if started within 48 hours of onset. Otherwise,you get all the side affects but no benefits. The rash had to run its course, and here is what helped, believe it or not. Apple cider vinegar, and aloe vera gel. (also cutting her finger nails to nubs) Still, getting her on the anti-viral in time is what probably saved her from the pain of post herpatic neuralgia. Many do say that if it happens, to increase B vitamin complex supplements. That would make sense, but if you have a good relationship with your elder's doc, please coordinate your efforts.. Every One... Listen to Cat Lady, and ask about the immunization. If it works, it is worth gold. (not personally sure it works, but more than worth a check) The pain that follows shingles, if post herpatic neuralgia occurs, is like having fire poring through the affected nerve paths. It is not imaginary. Your elder is not exagerating. IT HURTS for a long time..