srademacher

No words of wisdom here, just hoping and praying you come through all this okay. ((((((((((hugs)))))))) Sarah

Ron - I have no intention of going back to the ear Dr. with Gary. The ENT Specialists were on our preferred provider list and the closest to us. I had no idea they had idiots working there, or I would not have scheduled the appointment to begin with. I do not have an inner antenna alerting me to such incompetence ahead of time. As for the family Dr., I had a choice of going to an Urgent Care Clinic or to the PCP, where I had been seen before and they were aware of my situation - caring for totally disabled spouse. I guess I could have gone to urgent care and sat for an hour explaining my situation and what may have caused my shoulder problem, but when you're paying $22/hr. for a caregiver to do so, I don't see that as a wise option. Hope that answers your questions.

As expected, the ear appointment didn't go much better than my doctor appointment last week. We had to get Gary up early, get him showered, and dressed and out the door for an early appointment. Kelly sat with Gary while I filled out the forms on an electronic tablet - all the personal info. they needed before the appointment. We were then led back to an examining room, where the assistant asked "what are we here for today?" I told her I made the appointment to have his ears flushed since he had hard wax buildup in his ears and was having trouble hearing. She proceeded to type the info. into a computer, then began asking me all the same questions I had just answered on the electronic form in the outer office. I told her I had just answered all those questions and she said "well, I don't have that information here, so we need it again." I guess it doesn't transfer from one electronic computer to another in that office - go figure!! We were then led into another examining room, where Kelly and I had to transfer Gary to a chair for his examination. We waited a few min., the assistant left the room and Kelly and I asked each other - do you think we'll have to repeat the answers to all those questions again? Sure enough, in walks the Dr. - takes one look at Gary and then toward the nurse where they both rolled their eyes at each other. Kelly and I both read that as " Oh crap, I don't want this patient." Turns out we were right! Doc asks "what are we here for today?" I had to repeat my answer to him. Then he asks "how long ago did he have his stroke?" Again, I'm answering same question for 3rd time. Repeat several more questions and answers before he asks if we're planning to have his hearing tested for hearing aids. I told him Gary has already insisted he won't wear them, so we're hoping just to get the ears flushed. He said they don't do the flushing (would have been nice to know that before going in) then pulls out some tools to examine Gary's ears. Gary gets scared and starts to yell out, doc backs off and says - I can't get to the wax buildup - it's too far back and too hard. So then he says he will call in a RX for some "eye" drops that will help loosen the wax and we should bring him back in a week and he will try again. Kelly and I both got the impression that the min. I said we didn't need the hearing test as Gary would not wear the hearing aids anyhow - that doctor decided he didn't want to mess with us - his main focus was to sell some hearing aids. We left the examination room after a few min. Kelly thanked him on the way out - I kept my mouth shut as opposed to saying "thanks for nothing." We got home and I got a call about an hr. later from Walgreens to inform me that the RX was out of stock and they would inform us when it came in. I questioned what exactly he had ordered and the pharmacy assistant said it was eye solution for infection or irritation of the eyes. When I told her that he prescribed it to put in Gary's ears to loosen ear wax, she said she had never heard of that before, so I asked to talk to a pharmacist who also told me the same thing. I told them don't bother ordering it just for us as I would not be picking it up. I'm going back to putting ear wax removal in his ears, flushing with warm water and hydrogen peroxide and already I've seen a little improvement. In the meantime, it's been a whole week since my appointment for the shoulder and my doctor has never returned my call. I never got the MRI because she didn't re-write the RX for it, and I have yet to get a hoyer lift for Gary because we never got that RX either. I gave up calling them, as the office people keep telling me they scanned my messages into my chart and the doctor will call when she reads them. So, if I'm lucky I might get a call by June when I am due for my next annual physical. I should send them a message and tell them to change their answering machine: Press 1 for English, Press 2 for Spanish, Press 3 if you think we're actually going to call you back once we've received your co-pay. I have lots of new material for a comedy routine: You might live in AZ if your Dr. made it through the third grade. You might live in AZ if your ear Dr. prescribes eye drops for your ears. You might live in AZ if you go to the Dr. for papsmear and find out later the examining Dr. was a shrink. etc. etc. - I have tons more I could do on contractors ....if you get my drift!!! Sarah

Sandy, he needs to have his ears flushed by ear, nose & throat Dr. (ENT) because I can't get all the hardened wax out. If that doesn't work he may need a hearing aid. The dog license here cannot be renewed without the updated rabies shot. I did apply for the renewal online but was unable to scan the new rabies certificate in proper format, so had to mail a copy separate. I'm sorry but I didn't know you could check a drafts folder - I went directly back with the arrow and couldn't find it - how do you find a drafts folder???

Typed blog early this morning, hit "save draft" button - got "This Page Cannot be displayed", hit back button - it's gone - what else is new?? Got Gary's ENT appt. for Friday this week - hoping to relieve his hearing problems. Have a possible rotator cuff tear on my right shoulder from too much heavy lifting - went to doc yesterday, got meds and RX for MRI - meds too strong, herbal supplements working better - don't care to be in a fog with upset stomach from meds. Doc screwed up and wrote it for stronger Vicodin - medicare wouldn't cover because of dosage so had to pay $58 out of pocket for meds - have taken 1-1/2 pills and no more - can't tolerate them. Docs RX for MRI was on wrong form for a radiology clinic that is no longer on our medicare HMO plan, so left message that I need a new RX before I can get that done. Still have not heard back. Also, asked if doc could write an RX for a hoyer lift for Gary since I cannot lift at all right now, and may not be able to again depending on how long this injury lasts. No call back on that either. She was probably too busy adding up how much $$$ she made with appointments that day - not like she gives a damn! Focused more on a mole on my arm than the actual problem I went in for. Kelly is back to her 15 hr. this week - thank God - she took me to doc on Mon. and to pick up meds and then we took Gary out to eat, got home and she managed to remake beds and finish laundry before leaving that day. She had to drive since I couldn't. She also drove me and Pookie to vet on Tues. to get the dogs rabies shot so I can renew her license. I should be able to drive today since I haven't taken a Vicodin since Mon. night around 9 p.m. and the fog is just starting to lift from it. I have to get a few groceries today. Welcoming in 2015 with a bang....hope it doesn't go this way all year! Sarah

I will be glad when the weather warms up enough to get Gary out again. It's been a really chilly couple of weeks and I haven't let Kelly, his caregiver, take him out for walks or over to the clubhouse to shoot pool. The last thing we need is for him to catch a cold and me have to lose more sleep at night caring for him when she's not here. Christmas Eve Day Gary had a fall first thing in the morning. I had just gotten him out of the shower and let him drive his power chair over to the grab bar in the bedroom where I usually dress him. I left him sit for a min. or two while I straightened out his bed and cleaned up the water mess from the bathroom floor, when I heard a "thud." He was down on the floor, head in the carpet..ass in the air between his power chair and the futon that sits at the end of my bed. He had leaned too far sideways while drying his legs and tumbled over the side of the chair. I yelled at Dan, who was in his room at the other end of the house, and he came in to help me get Gary up off the floor. At the time, we didn't see any obvious signs of any trauma from the fall. We celebrated a late Christmas with our middle son, Joel and his wife and our grandson the Saturday after Christmas. Joel cooked a wonderful turkey dinner, and we exchanged gifts and watched some funny utube videos. Gary was still doing fine, aside from not getting a nap that day. We stayed home on Sunday and then on Monday Kelly was here to care for him for six hours. She called me about half way through the morning to tell me he was having trouble hearing and wondered if I had any of the candles to try candling his ears. I told her I would come home early and maybe we could do that together, as it usually takes two people to do it safely. I came home around noon, and since the weather was half way decent - low 60s by then, we took him out on the patio and I trimmed his hair, and then tried some ear wax removal in his ears and got a ton of wax out of both of them. He still was having trouble hearing but could hear a bit better than before. I decided to wait with the candling and try putting more of the wax removal solution in the ears first and give it a chance to work. By early the next morning, I got more of it cleaned out and then did the candling method. After all that, and removing a bunch more wax, mostly left ear, yesterday morning, he is still yelling at me constantly when he's up and awake - what?? I can't hear you! I've always thought most of Gary's hearing problems were "selective hearing" but he's never been this bad before. I remember one time on vacation in Oregon, long before he had his stroke, we had to make an emergency appointment with an ear Dr. to get his ears flushed because he had so much hard wax buildup in one of them, his face was actually swelling. I think we're at the point now that I need to get him in to an ear Dr. again, but with the holiday weekend, I can't even call anyone until Monday and then it could take up to a week or more to get him in since our regular family Dr. won't do the ear flushing. In the meantime, he could literally drive me crazy with his yelling - and demanding that I turn the television up for him to hear, which doesn't work anyhow. We had actually blown the speakers on our last television because of his not being able to hear it. I keep telling him it's loud enough to wake up the dead at the cemetery a mile away, and he still can't hear it. We also have a son living with us who sleeps during the daytime hours when we are up and about, and his room is just off the living room, so I don't want to wake him when he has to work night shifts and needs his sleep. I told Gary last night that I can't do anything more for his hearing problems until we get him to a Dr. and if the Dr. suggests he needs hearing aids, then he better cooperate. He insists he will not wear them .....if that is the case, I told him that I can no longer care for him at home. His comment was "then I might as well be dead." All I could say after that was "jackass." He heard me just fine when I said it ...even laughed, like this is all a game to him. Sarah

Nancy, I can only offer a ((((hug)))) for support and keep you and Dan in our prayers. One day at a time has been my saving grace. I can't look farther down the road or I'd have never made it this far. Sarah

I am the Grinch that stole Christmas around here. I have no desire to decorate, put up a tree, or make any plans for the holiday. It's all a lot of work to me and I don't need more work, I need a vacation. My neighbors were busy decorating their front yard last weekend and asked (for the 3rd year in a row) if they could plug some of their decorations into our outside outlet because they didn't want to run a cord across their driveway. I said it would be okay for that day only until after the contest judging and after that I would need the outlet to plug in my golf cart. My thought was if they had so darn many decorations that needed lit up, then maybe they should have an outside outlet of their own or a long enough extension cord to run up and across their carport to the other side of their driveway. Yes, I am a scrooge ...so deal with it. The neighbor man made fun of me for not having any decorations up, so I went inside to check on Gary and put a package by the front window and set a stuffed teddy bear on it and a stuffed penguin that Dan had bought for our dogs for Christmas. I then asked the neighbor - "does it look like too much?" lol I did manage to do some online shopping and ship off a package to the kids in Colorado, I got Kelly's (caregiver) gift and a gift for our gal who brings communion on Sundays, but so far that's all I've done. I have the ingredients here to do some baking but don't want all those sweets setting around tempting me when all I've done is gain back weight over the last six months, so I'm refusing to bake any goodies. I cook when I have to, not because I want to and anyone who wants to complain can take over that job! I'll be happy to hand it over on silver platter! I just can't get in the spirit - it seems it's just the same crap, different day around here, year after year. I also have no desire to go the potlucks lately as it seems that if the parking lots are already full, there's definitely not going to be a good place to sit inside. If we aren't near an exit when Gary has to use a bathroom, we'd be in a real mess as I can't get him in the bathrooms at the clubhouse. The last thing I need after busting my butt to get him cleaned up and out for the evening is to have to deal with a messy cleanup on top of everything just because I can't get him into a bathroom there. Our roofers finished up the new roof over Dan's room last week, but had to come back this week to clean up the tar mess they let drip down the back side of the house and after-spray they got all over my air conditioning units at the back of that room. I held back the final payment until they got it all cleaned up even though the foreman promised they would come back and do the cleanup. If I had a dime for every time I heard that promise from a contractor who never followed up, I'd have been rich a long time ago. lol I'm starting to get too grouchy for myself.....maybe I need a nap - I was up at least twice during the night to hold a urinal or let the dogs out. If I'm lucky, I might get 1/2 hr. nap in before someone starts yelling that he has to go to the bathroom again! Sarah

One day at a time, young lady. You do what you have to do and if that means putting Dan in a facility so you can take care of yourself, then do it and don't let anyone or anything guilt you into doing otherwise. Keeping you both in our prayers! Sarah

This has been a long holiday weekend for us with having Kelly only 3 days last week and giving her Friday off. That meant I got to shower, shave, dress and feed Gary 4 days straight and even though I've been doing it most of the 10 years since his stroke, I've grown accustomed to having Kelly here 4 days a week to do the difficult part of his care for me. Thursday, Thanksgiving Day, Gary slept in late since he had stayed up to watch Survivor and Criminal Minds the night before. By the time he finally got up and I got him showered it was nearly noon. We did not make plans to do anything special for Thanksgiving, so I took him to the casino for breakfast - his favorite meal since he loves his pancakes. We played a little, and just before we headed home, I stopped to take him to the family bathroom. We had nearly a ten minute wait as it was locked when we got there - and someone told me they thought a woman took her husband in who was in a wheelchair. I tried to be patient while waiting but also knew if they didn't get out of there soon, we would have an accident mess to clean up. After a casino employee asked me how long we had been waiting, she knocked on the door and said something to the person inside, and out came another employee with a sheepish grin on her face. It appeared she had locked herself in there on her break and was probably on her cell phone where she could have some privacy - that was until we came to use the bathroom! Very frustrating when people tie up those bathrooms that we so desperately need when Gary has to go. After we got home, he napped most of the afternoon and went to bed early. Most of Friday, Sat. and Sunday were sitting home doing nothing - me cooking and cleaning, him sleeping and our son who was off for the weekend, slept most of the time also. Boring weekend!! I will be happy for Kelly's return today so I can get out again. I'm starting to feel like a caged wild animal. I have to drop off my Christmas cards at the post office, mail a package to my Mom with some Christmas cards in it for her to send if she wishes to do so, and some stamps for her. I didn't make out a lot of Christmas cards - less than 20 total, mostly to immediate family and a few close friends. And, since the majority of these people are on facebook, I didn't have to write any lengthy letters. Good thing as my carpal tunnel from playing computer games is getting worse with the cooler weather and arthritis setting in the hands. Most of my Christmas shopping was done online last week, so I'm waiting on packages to arrive, so I can individually wrap them, and box them to ship off to the kids in Colorado. Mom is getting a Walmart gift card again, as that seems to be the only thing she really can use to get whatever personal items she needs at her assisted living place. I'm looking for a new lift chair for Gary as his old one has a few good sized tears from hitting the wall with it, or running into it with the power chair, and it's always been a bit uncomfortable for him. He actually prefers my big leather recliner but it's much more difficult getting him in and out of it, since it's not a lift recliner. As for myself, I'm still in need of a vacation, and may just take one for myself after the first of the year - even if it's only a weekend trip nearby - it's still a much needed break!! Sarah

This past week we lost a friend here in the park. Roger was a very active member of the HOA and worked on all the events in the park with his very active young wife. He was in his early 80's and had been diagnosed about a year ago with leukemia. The last four weeks he had been pretty much homebound with hospice so we knew it was coming, but still sad to see him go. Before being homebound he was still showing up at the Fri. night socials and although movement was slow, he could get out on the dance floor with his wife. Both were excellent dancers. RIP Roger! Yesterday I heard from my neighbor, Lois, that her good friend, Roy had passed away. He was in his early 80s and had suffered a stroke about 8 months ago. One of his daughters was caring for him at home after numerous trips to hospitals and several rehabs, and we had given them a wheelchair, walker, shower chair and some other medical supplies to help with his care when he came home. His daughter is very close to Lois, and she treats her as a daughter so this was really hard on Lois. I think she spent 2.5 hr. yesterday talking to me about it as we sat on our front porch while Gary napped in the afternoon. I offered to drive her to the services if she needed me to do so whenever they are arranged. Gary has an appointment early Friday morning with an oral surgeon. He has finally broken the tooth that was cracked by grinding his teeth when he gets agitated..........that darn Bronco game on Sunday didn't help any when they lost badly to the Rams. He was grinding his teeth through most of the second half when it appeared they weren't going to make a big comeback. Dan and I kept telling him to stop and threatening to turn off the game if he didn't. He does not realize the damage he does when he's grinding those teeth, now he will have to be sedated and the tooth will have to come out. It's been about 5 or 6 yr. since the last one was removed, and he had a difficult time coming out of the sedation at that time. This time I will take Kelly and Dan with me to help get him back out of the dental chair and into the car. He will most likely sleep a good 24 hr. after and then will be on pureed foods for a while until we figure out if he can chew his food again. Just what we need with him still having swallowing difficulties from the stroke 10 yr. ago. Yesterday morning I stopped at the casino for an hr. to pick up one of my "free" gifts that I received a coupon for, and while waiting for the line to go down I played a penny machine. I hit a jackpot over $900 and came home $800 ahead after tipping the gal who hand paid the jackpot. I'm sure all or most of that $800 will go toward paying for Gary's oral surgery on Fri. Good news came yesterday also - The package I had sent a week ago finally arrived at the funeral home in WA where I had sent my Mom's cremation urn and all the paperwork to prepay her arrangements for when she passes. After all the drama last week of tracing the package and FedEx finally finding that it was sitting in a back room at the local post office, which is why they didn't have a record of picking it up at the Mailbox shop where I had originally left it, they finally got it sent out on Friday with a new tracking number. I had spent nearly a month getting all the paperwork together, after having to send some to two of my sisters for signature and waiting for the return of those pages, then putting it all together with the urn that I had for Mom, and enclosing a check, only to have it disappear from the radar for five days. It was beyond frustrating, and after blaming FedEx for the error, I now think it may have been the Mailbox shop that gave the wrong group of packages to the postal employee that day. They send packages via USPS, FedEx and UPS, from that shop. I will no longer send packages that way, I will now go directly to either the post office or FedEx or UPS stores, even if it means driving farther to do so. Only other news is that our granddaughter in Colorado, who recently got her car back after it had been stolen about a year ago, has now had it totaled by a driver who slid into it on an icy street in front of son's house. At least she wasn't in the car at the time, but son is very frustrated that they had just finished fixing it all up for her again after getting it back. That was a car with bad "Karma." Sarah

We got back late Friday afternoon from our trip. Lucky for me that Kelly did all the driving on the way back as I hadn't slept much the whole time we were in CA and could not have driven for six hours and managed the rush hour traffic that we hit when we arrived in the Phoenix area. We took turns driving on the way out and while in CA, and she got up early the first morning, grabbed the car keys I left on the dining table with a grocery list and $100 bill and went to get all the groceries we needed for the 3 days at the condo. The first night we arrived, we called Gary's brother and he and his wife came over to the condo. Their hotel was only about 1/2 mile away. We visited for a bit and then decided to go out and walk the pier over the beach that was just outside the back of our timeshare building. Gary enjoyed that even though it got a bit chilly at times. He laughed at the sea gulls diving for food on the pier and we watched some fishermen pull in small tuna and the birds dive bombing them. lol At the end of the pier was a nice hamburger restaurant, 50s and 60s theme, so we stopped and had burgers and fries for dinner that night. On Wednesday morning, we got Gary up around 9 a.m., made pancakes, eggs and turkey bacon for breakfast and when his brother and sis-in-law got over to our condo, we all headed out to the beach for a "short" walk, according to George. Both Gary's brother and sis-in-law are tall people so to keep up with them walking, I had to sprint. I know I slowed them down quite a bit, as my walking at home usually consists of trips from one end of the house to the other or walking from the farthest space from the grocery store door on a good day, or the handicap parking space on a bad day. By the time we walked that "short" walk along the beach (George pushed Gary in the wheelchair), and over to the small lighthouse they wanted to see where there was a small shopping center for sourveniers - I swear we had walked 2.5 miles. We rested a few times along the way, but on the way back I wasn't sure I would make it without my bad knee giving out. George sat with Gary by a picnic table on the beach, since we couldn't see any lifeguards anywhere to get us a beach wheelchair for him, while Ginger, Kelly and I took off our shoes and walked in the ocean. Kelly took a picture of me standing in the water but as I backed up for her to get a better picture of the waves, I got hit by a good one and it washed up to my rear end, so I walked the rest of the way back with wet pants. Gary napped for a few hours that afternoon and then we cooked spaghetti with meatballs, and had salad and garlic bread for dinner at our place. We even had a dutch apple pie for dessert, as I'm sure I walked off at least one piece of that pie! lol Went to bed with stiff legs, but rubbed down with Pain Wizard so didn't even feel it by the time we got up next morning. Thursday morning we headed off to San Diego for a day at Sea World and met up with his brother there. Again, it was sprint, sprint, sprint from one show to another with a stop between the last two shows for a quick lunch, then off to see the Shamu the whale show. By the time we saw all the shows that were on our agenda, it was time to hit the road back north to Oceanside before rush hour started. We did hit a bit of rush hour traffic getting out of San Diego, but Kelly was driving, so I didn't have to worry about it. She was more familiar with the area as she had traveled there many times, had rollerbladed some 30 miles and done marathons in that area in past years. The brother and sis-in-law came over later for leftover spaghetti so we could eat up the last of the groceries before we had to leave on Friday morning and we visited for a few hours before saying our goodbyes. They were going to fly back to Seattle on Fri. morning and we planned to get out early on the road to home. After they left, we wanted to keep Gary up long enough for his dinner to settle before putting him to bed, so we sat out on the balcony of the condo. There were large crowds of people coming and going from the park across the way where there was a concert with a rock band, so we thought it would be funny to drop money from the balcony and then sit back and watch who picked it up. lol I came up with about six - one dollar bills and Kelly had three. We made them into paper airplanes and launched them one at a time off the balcony as we saw another group of people approaching. Gary laughed so hard I was afraid he would pee himself. Kelly and I giggled like school girls, but we had more fun and it cost us less than a trip to a casino. Friday morning Kelly and I were up at 5:30 and cleaned up the last of the coffee, dumped out the leftover groceries, took out the trashes and packed up our stuff before we got Gary up and ready to go. We didn't bother to try showering him since he was still half asleep, but washed him up good with a wash cloth and gave him some juice before we settled him into the front seat, reclined him and let him go back to sleep until we stopped at a Dennys for breakfast. The ride home seemed to go much faster than the ride there. Our only incident was when Kelly had to go off to the left shoulder of the road and get back on before losing control in the gravel when some idiot cut us off and nearly hit us. She was alert enough to see him coming toward us and moved out of the way and managed to keep control of the vehicle to avoid us getting hit. I think the guy was dozing at the wheel, but it was a frightening moment for us. We're home and back to the same old routine again. I'm up early with the dogs and doing laundry from the trip and Gary had me up 3 times during the night to hold the urinal for him, and now he's sleeping in. Sarah

I was hoping to get a good night's sleep before we head out on the road this morning to Oceanside, CA for some serious beach time, but that didn't happen. Every time I plan a trip with Gary, I wonder why I'm doing this again. It never gets easier, and when I don't get enough sleep, it actually becomes dangerous. Thankfully, his caregiver will be going with us on this trip, so I'm hoping she got a good night's sleep and can help with the driving. I got Gary to bed around 8:30 last night, and am dreading having to get him up at 8, showered, shaved, fed and ready to hit the road by 9 a.m. Fortunately for him, he will most likely sleep the whole trip in the car while Kelly and I try to keep each other awake and alert behind the wheel of the car. We are hoping to get to Oceanside by 4 p.m., get checked into the condo and pick up a few groceries so we can cook dinner at the condo. Gary's brother and sister-in-law from Seattle are flying into San Diego and will be at a hotel near us, so we'll have them over for dinner and a visit tonight. Wednesday we'll have breakfast at the condo and then head out to the beach for a few hours before he tires out and needs his afternoon nap. I'm taking jackets along as it could be chilly in the morning hours, but supposed to be high 70s or low 80s in the afternoon. I might try to sneak out for a massage while Kelly sits with him during his afternoon nap. I'm taking my swimsuit along in case I get a chance to sit in the hottub or can work in a quick swim, but I'm not sure I can fit my fat butt into it since I've gained back some weight from stress eating. I'll let Gary's brother decide what they want to do on Thursday and hopefully we can all agree on an activity that Gary can participate in. By Friday morning, we check out and make the return trip back home. We don't have to rush the trip home, since Dan is staying home with the dogs and Kelly has her Mom staying with her dog, so maybe we can make a few sightseeing stops along the way. I hope to have a few pics to post from the trip but for now, I'm headed to the tub for a long soak, then it's busy making sandwiches for the road and packing last minute stuff in the cooler. Sarah

I thought all caregivers knew and understood the importance of keeping the skin clean and free of sores, scrapes, scratches, etc., but apparently it's not as important to some as to others. I have had to repeatedly remind the caregiver to make sure Gary gets wiped clean after having a BM on her shift. There is nothing worse than putting him to bed at night and smelling leftover mess in that area and then trying to clean it after it's dried and fermented all day while he sat in it. I had to give a lesson in buttwiping 101 again this week. I am tired of hearing "I wiped him good" and then finding leftover mess hours later - it's not acceptable when I am paying $22/hr. for his care. It's time for another lesson this week, and this time I will ask to check the cellphone at the door, as I fear she is afraid it will fall out of her pocket if she bends over too far to wipe him properly. Another lesson I learned this week while shopping at Walmart, is that here in AZ you can't take a short-cut through the Depends aisle as the wheelchairs and walkers are lined up worse than the pre-boarding lines for a Southwest Airlines flight heading to Phoenix. And, look out if someone has a cane - DO NOT get in their way! After Gary's incident in WA, I decided it was time to get on the ball and get a new DNR for AZ, since the Colorado one is not valid here and we've been here over two years already (wow, times flies when you're having fun)! I downloaded the form from the AZ website, copied it onto orange paper (as stated to make it a "legal" document), and got all the signatures except for the Dr. I called on Friday and they said the physician's assistant who did his last two physicals wouldn't be in the Scottsdale office until Tues. of this week, so I stopped by and dropped it off at the office that morning before heading to my 90 min. massage. I checked back later and she hadn't signed it yet, so I had to wait until the next morning to pick it up. Gary now has a legal DNR hanging on the refrigerator in case something should happen at home. He is determined that he will never go through another trip to hospital, tubes, machines, and all that he went through after the massive stroke in 2004 if he has to continue to live like this, and I have to respect his wishes. We got an email this week from another stroke buddy's wife - Dennis had his stroke a year before Gary and we met him and his wife after I spent a night in ICU with chest pains while Gary was in rehab. All the stress had thrown my body out of whack and it ended up being a thyroid problem, but they were running all the heart tests because of the stress I was experiencing at the time. I was given their number by one of the nurses in the ICU, who told me we had similar situations and I should contact her for support. Dennis had a massive brainstem stroke in 2003 and has pretty much been homebound since that first couple of years, as she found it too difficult to travel or go anywhere with him. He was recently diagnosed with blood cancer, so they've taken him off all meds and have hospice coming in now. He is about a year older than Gary - but has been through 11 years of Hell since his stroke, not to mention the toll it has taken on his wife. She will keep me updated on his condition. We only have about 1.5 weeks before we head out to San Diego for a beach weekend. I'm hoping it all goes smoothly as Gary's caregiver will be going with us to help with driving and his care.........but I think I'll be doing the buttwiping! lol Sarah

We survived the trip. Got in to Portland airport around 3 p.m. Waited in long line to pick up rental vehicle - upgraded to minivan in case we were able to get Mom out to lunch or dinner and needed space for 2 wheelchairs. By the time we stopped for dinner on the way to hotel in Lacey, WA and got to hotel it was nearly 4 hours later - 7 p.m. Our so-called accessible room at the Quality Inn in Lacey was a joke to say the least. Barely room to get around in wheelchair - bottom level room down a long hallway and around a corner, about as far from an accessible exit as one could be (up the creek without a paddle in case of fire). I attached a picture of the roll in shower with a shower chair (non adjustable) that sat nearer to the floor than to the grab bars. It was so flimsy that it barely held Gary's dead weight, and I asked at the front desk why they didn't get a $3.99 plastic patio chair to put in that shower as opposed to a $2 garage sale piece of junk that couldn't even hold 100 lb. if it had to. Ridiculous - but since they made me prepay the room when I booked it, there was no way they were going to either refund me anything or accommodate our needs - YOU KNOW WHERE NOT TO STAY IN THAT AREA!!! We got to bed at 8 the first night and since we had 2 queen beds and Dan (our son) slept in the room with us, I had to share a bed with Gary. He is used to his own bed, so kept trying to take his half out of the middle of it. I was awake about 4 a.m. when I tried to move him over and discovered he was not breathing and couldn't find a pulse. I tried for some time to arouse him, with no response. I finally yelled at Dan and he woke up and tried yelling at his Dad and finally we got a deep sigh and then he started breathing again. I'm sure he does this often at night since he has sleep apnea, but I've never been close enough to hear or respond to it. It scared the living *Poop* out of me! I was so upset I told him he'd better not die on this trip and make me drag his dead ass carcass to Mom's 90th birthday party!!! sheeeeeeeeeeeshh!! Mom was her usual grumpy self when we arrived at her place on Sunday. I made the mistake of offering to take her out to lunch for her birthday and then it was a real struggle getting her into a vehicle ...we managed but not without alot of bitching and complaining on her part. We went to an Applebees and nothing was right there either......she even asked the waitress for another fork as she didn't like that "pitchfork" they gave her to eat with. lol I felt so bad for the waitress, I ended up giving her a 50 percent tip. lol Two of my sisters, a brother-in-law and a niece and her hubby showed up that day for the little party after the lunch out. We had cake on the patio at Mom's assisted living place, and then all left about the time she was to go to dinner in the dining room. We headed back to hotel and picked up a few items on the way over. Dan wanted some breathe right strips so we wouldn't have another snore fest like the night before. lol On Monday we drove back over to see Mom and I picked her up some roses for her birthday, since Monday was the actual day of her birthday. I went to her room to help put them in water for her and she criticized the way I was doing it. I let her complaining go in one ear and out the other. If you knew my Mom, that's the way she's been her whole life ....when you don't hear any complaining from her, you probably won't find a pulse either. lol We headed back home Tues. morning and got back to Phoenix around 2:30 and Kelly, Gary's caregiver picked us up at the airport. Gary cried because he knew he would probably not see my Mom again as this was a very difficult trip to take him on with his lack of mobility. I had to inform him, as long as he was on his crying jag anyhow, that his ex-brother-in-law also passed away the same day as Mom's birthday. They had gone on many hunting and fishing trips together in the early years when his sis was married to John, and he was a good six years younger than us. We're home, I got some sleep and now it's back to getting some work done on this place before we head off to San Diego in a month for a nice beach weekend. Sarah

So happy for you that you had a good trip in spite of how difficult it is to travel with a disabled spouse. Gary and I have taken numerous trips, but it's a lot of work for me. Even though we seldom have the incontinence issues, I always take a waterproof pad (not the disposable kind) with us when we are staying at motels or timeshare condos and place it under Gary on the bed - just in case! I think Dr. Leonards catalog has them - usually a 3' x 3' with waterproof backing and they are lightweight enough to pack at least one per trip and can easily be washed out in a shower or tub and hung to dry overnight in the bathroom. I always keep one on his bed at home also - just in case! Better to be safe than sorry. Sarah

Asha, You have survived a stroke ......you will survive this!! You may even be amazed at how nice it is being an empty nester, and you and hubby can take time off and go without planning around school schedules and activities. How about a second honeymoon , just the two of you!! Sarah

I hope the surgery goes well and you are up and about again soon. I probably should have warned you before you went to Vegas, that it is not all that user friendly for disabled persons. Even if you had taken a power wheelchair to get around, you would have fought crowds everywhere. Rest up, recuperate, and no more Vegas trips for you, Buddy! lol Sarah

Hi Karen, Welcome to the best stroke/caregiver support online. I am so glad you were able to find this site and hope that you will continue to blog and maybe even get a chance to join the caregiver chat on Tuesday evenings - 8 p.m. EST. You will find a lot of support here. I found this site within a month or so after my husband had a massive brainstem stroke in June 2004, and have been coming here off and on for over ten years now..........wouldn't have survived without the support from all the wonderful people here on this site. You have already been given some good advice here, so there isn't much more I can add except to say that you have to take some time for yourself, or you can't take care of your spouse. I know that is easier said than done, as I have been through numerous caregivers before I finally found one that I really trust to leave my husband with and get away for a few hours at a time for myself. Please continue to update us on yours and your husband's progress. Sarah

Well, I tried to comment, but it disappeared............maybe I need a vacation too. lol If you can make it to Phoenix area while in AZ, let's do a mani/pedi or a facial one day..........okay! Sarah

Julie, I am so sorry you're having to deal with all the issues. We have a son with Crohn's Disease and I know how difficult it is to deal with ...he was originally diagnosed with colitis, then IBS, then Crohns and has been battling one form or the other of it for nearly 20 years. He has been on the IV drips that cost thousands of dollars per treatment because they're not yet FDA approved so insurance won't cover them. He has learned to live with it as much as he hates it and the problems it causes, even found a support group online for it. He still is able to work and travel (although he now has to fly 1st class in order to be near the bathroom on planes to Europe). Lucky for you that you are able to leave Larry for short periods of time to be with your son at the hospital. Hope things improve soon for you all..........you're in our thoughts and prayers. Sarah

Nancy, I am so sorry you're having to go through this, but having met Dan and you I understand where he is coming from. He's tired of the struggle, he wants it over and done with and he seems to want it sooner rather than later. Our stroke friends from Colorado just went through the same thing, and he passed away on Tuesday. She had just called me three weeks ago and told me she was struggling with whether to force feed him, when he was refusing to eat, and basically just giving up on life. As much as she wanted to hang on to him, he was ready to go and they finally called in hospice on Saturday. We can't control everything our survivors think and do, we can only control how we react to their decisions. My prayers are with you ............these are life changing or ending decisions he is making, and it's not easy to give him that choice, but it seems to be his choice.

Murphy's law?? lol Glad you survived it all...........when you ask how much more your shoulders can take, you'll always get an answer and one more thing to deal with..... grin and bear (or bare it)......or have a glass of wine, whatever works best for you! lol

Glad you are doing okay....Give Dan a little time, before you know it he'll be waving you out the door so he can spend more time with his caregiver. Gary was very afraid for me to get out and about and leave his side when he would get a new caregiver, but didn't take long if he liked them to say, "goodbye, don't hurry back." lol

Sandy, we were forced to get a power chair for Gary when it became impossible to push him around in a manual wc on carpets in our home, even though we had gone to lower carpets with no padding underneath. After 10 years, he is now on his 4th Jazzy power chair, all of them paid for out of pocket as medicare would not cover one for him with his poor vision and inability to control his good hand - it would be like putting a blind drunk behind the wheel of a car. But we use it around the house mostly to get him from room to room and to get him out to the car to load him, or take a walk around the park where he has lots of room to practice operating it. The first two I found on craigslist for $1100 each, after that I shopped longer and found brand new ones, never used or very little use for $100 and the last one $400. We use a $200 foldup ramp to get it in or out of the van, so no taking it apart, just fold down to fit and off we go. I'm so happy for you that you are now able to get out and about and enjoy life again. Sarah