srademacher

Fred, With so many people out of work, you would think it would be easy for us to find good, reliable help, but that's not always the case. I find that too many people have a sense of entitlement to a paycheck, but lack the desire to do the actual work to earn it. I have had to pay $20 - $25/hr. for people to care for Gary so I can get out, but most feel all they have to do is sit on their butt and watch t.v. while he sleeps. Try asking them to get off their duff and dust a bit of furniture or wash a load of clothes, and all I get is excuses. We have a revolving door of caregivers as a result. Sarah

Asha, I am sorry to hear about your uncle and cousins deaths. One family member lost is bad enough, but two so close together is tough to comprehend. Sounds like your cousin was close to same age as Gary's niece's husband who just passed away, only 28 days after they got married. So young, and so difficult to understand why. Our thoughts and prayers are with you and your family during this difficult time. Sarah

Leah, You are right .....you are not alone! We are all here for you and continue to keep you in our prayers. Sarah

Asha, Congratulations on your 20th anniversary. May you have many, many more happy years together!

Ruth, I have a response for anyone who has comments about me taking Gary into a women's restroom. I would ask "would you prefer that he leave a puddle on the floor outside, so you can slip in it and sue the establishment?" Shuts them up in a big hurry!! Until they have walked in your shoes or peed in their own pants, they will never get it because it's not their problem. I'm glad that you are strong enough to continue with the outings with William in spite of the intolerance. I'm good at ignoring most of it, but some days I let it get to me also. I know that I could never treat people the way that some have treated us since Gary's stroke, but they have to live with themselves and karma can be a real "B" itch! We once had a security guard waiting outside the women's restroom after someone probably reported hearing Gary laughing in the women's room. As soon as I wheeled Gary out past him, he stood with his arms crossed and took one look at Gary and said "oh, okay, no problem ma'am." I said "there better not be." Within a few months, they installed a family bathroom at that casino. lol Sarah

Sue, I know I will have to walk in those shoes some day soon also, and my heart aches for you now. But, knowing what a faithful wife and daughter you are, it's not like you would be abandoning Ray if you were forced to place him in a nursing facility. You will still be the "hands-on" caregiver that you have been at home, and that you continue to be with your Mother. Same stuff, different location - and more able to be a wife to him instead of nurse, cook, housekeeper, etc. You are in our daily prayers! Sarah

Ruth, I know how very difficult it is to have to turn his care over to others, but in the long-run we all know that when it comes to the physical, mental, and emotional breakdown of your own well-being it's something none of us can do forever. We weren't built to handle that kind of strain on our bodies forever. My day is coming, probably sooner rather than later and I'm trying not to look that far ahead, as I know I will have a tough time making the decisions you have had to make. Hang in there, and know that you did what you had to do to preserve what's left of your own health and sanity. Sarah

Fred, I have to agree that it is sooooo wrong for Congressmen and Senators to get pay raises while cutting back on veteran's benefits or medicare. When I heard on the news last night that Gabby Giffords will be getting 24/7 home health care with her release from rehab, I wondered how many others had insurance that would cover such care. Imagine if all the stroke survivors on strokenet alone had the kind of care that congress and senate get with their benefits, how much different their recovery could have been. Did medicare help to cover the cost of the stair lift? If I were to try to get one to be able to get Gary to the basement for his therapy sessions (much more room down there to put equipment), do you think they would cover it? Sarah

It sounds to me like your job since placing him in the nursing home has become much more stressful. You may not be doing the physical hands-on caring that you did at home, but when you're paying a nursing home the kind of money they charge these days, it seems ridiculous that you should have to do any of the hands-on caring (bathing, changing, etc.). I think I'd be filing complaints with the state. We checked out the local nursing homes before Gary went to rehab, and after what I saw in most of them, there was no way I'd be able to place him in one locally. I know that I cannot do the full-time care at home forever, as seven years of the lifting and doing everything for Gary has definitely taken it's toll on my body and I'm not getting any younger. That was one of the primary reasons I wanted to sell our home and get out of this county, and head south to warmer weather. Unfortunately, with the economy and housing market the way they are today, that's not happening. I hope and pray that you are able to get the nursing facility to make some necessary changes to reduce your stress level and give you some assurance that he is being care for properly. If you can find the time, please try to pop in to one of the caregiver chats , either Tues. at 8 p.m. EST, or Thurs. at 8 p.m. PST and join in the conversations. I think what you have learned from your experience would be a great help to others who may be forced to make the same decisions. (((((((((hugs))))))))) to you and hope your own health improves. Sarah

Sue, I'm sorry that things are on the downhill slant again for you. Like Mary Jo, I also have had to do all the lifting and transferring with Gary from the day he came home from rehab seven years ago. He has never been able to stand alone for even a second. I found the roll-in chair for the roll-in shower works very well. We have a grab bar in the bathroom where I park him in his power chair. He grabs hold with the good hand, I help raise him up and get him to swing his affected leg forward (without putting weight on it so he doesn't break an ankle), and then sit him back onto the rolling chair. There's still that little rubber seal that I have to lift the chair to pull it over but much easier than trying to transfer him to a shower bench. In some ways, I feel lucky that Gary has never been able to walk or stand on his own since the stroke, as I learned from the beginning how to hold him up to pull up his britches, or transfer him and we have had very few falls and when we do have a fall, I'm always there to lower him gently to the floor when I can't hold his full weight, so no major injuries from the falls. I'm not saying it's an easy thing to do - after many years, it takes it's toll on your back. I do know that having the power wheelchair helps make things easier for me in the long run - transferring to a more solid wheelchair is sooooooooo much safer than the manual wheelchairs, when the patient has poor balance or motor control. You will figure out what works best for both of you with the new challenges from this latest fall, and we are all here to support you in your decisions. Sarah

I hope you don't mind that I shared your interview with friends on my facebook page. I think the more people become aware that stroke can strike at any age and without pre-existing conditions, the better. Thanks so much for sharing! Sarah

What a nice birthday present for both of you. Happy Birthday !!!! Sarah

I can soooooooooo relate to your experiences with caregivers for patient with aphasia. Since 2004, I can't even count the numbers we have been through either on our own or with an agency. I would come home early and find one screaming and yelling at my husband because he was choking and spitting his food, another one had put him back for a nap the minute I went out the door so she could talk on the phone (argue with family member), one got on my computer and stole credit card information which took me over six months to clear up, another one used her calling card to call relatives in Africa but I got charged a connection fee because I didn't have long distance service, and on and on it goes. It must be even more difficult for you with being so far away. I certainly can empathize. Sarah

Fred, I'm sure we all wish we had the same kind of medical benefits our senators and congressmen and women have. Gary had good insurance through his electrical union, but even they hesitated to pay bills on time causing him to be dismissed from one hospital too early, refused for treatment at the best brain injury rehab facility in Denver, and then pushed out of rehab much sooner than he should have been to return home. They kept telling me they were paying the bills and he could stay as long as he needed to, but they were delaying paying the bills and fighting the medical facilities over every little detail to the point nobody wanted to deal with them. I even had a billing supervisor approach me in Gary's room right after he was released from ICU to the neuro unit and ask me if we were going to be able to come up with our share of the bill. I wasn't even sure if he was going to live or die at that point so I told her if she was worried about it, maybe I should wheel him out to the interstate in a wheelchair and hold out a tin can for donations.

MJ, Our middle son is on the Remicade every 6-8 weeks for IBS and it seems to be the only thing helping. I pray it will help Dan also and he will be able to come back home soon. Sarah

Karen, We are continuing to pray for you and Bill. Please call me if there is a day we can drive to Denver to meet with you and Bill, even if it's just a lunch date. Sarah

Katrina, You are truly an inspiration to all. Congratulations on accepting the miracles in your life. You are an amazing young woman!! Sarah

Sorry about the current problems. One day at a time and hope for the best, that's all any of us can do. Life's challenges sometimes become to overwhelming to imagine! ((((Hugs))) and prayers coming your way! Sarah

Fred, We spent a ton of money on the kids and grandkids, but for ourselves I got a GPS system for our travels, since Gary can't read a map or help navigate when I drive the motorhome. Gary got his trip to the casino late on Christmas Day and got to play the penny machines for a few hours and we had dinner with our son that night since he had to work Christmas Day. It was pretty low-key around here as usual.

Karen, You and Bill are always in our thoughts and prayers. What is the date of the surgery? Is it at the VA Hospital? Do you have someone who can be with you while he is in surgery? Sarah

sounds like fun. We missed all four of ours this year, so I set out some crackers and made some artichoke dip and had my own little party at home. lol

Sue, In the 6-1/2 years since Gary's stroke, we have had to deal with many disappointments in getting used to a new normal in our lives and "getting over it" doesn't come easy. Last week we had planned to attend at least four Christmas parties and because of Gary's bad cold, we missed them all. I think I've finally come to the point where I accept it as normal. Am I disappointed? You bet I am!!! Do I wish I could have gone to at least one of the parties, with or without him?? You bet I do! It didn't happen, and it's something that I've learned to live with because of his limitations. By the end of the week his cold had cleared and we were fortunate enough to be able to finally see (after nearly 6 months) our two local grandkids, as they came over to pick up their gift cards. Two hours of visiting time in six months isn't a lot but we treasure what little time we have with them. Caregiving tends to wear you down, not only physically but also emotionally. It's not easy to put on a smile and pretend that everything is okay, when in reality it's not, especially when your care recipient appears to be less than appreciative of all that you do. I don't get the "get over it" from Gary, it's more like "everything is your fault." I guess it would be my fault since I'm the one who has to do everything! lol Sarah

Merry Christmas to you too Fred - we're going to keep it low key - bake a birthday cake and sing Happy Birthday to Jesus! Isn't that what Christmas is about?? Sarah

Sue, It definitely has been a long, tough road for the two of you. It's sad that Drs. didn't explain that often times having had one stroke or being diabetic can be a pre-cursor to a major stroke later on. At age 56, Gary had a series of undiagnosed TIAs over a 2-3 month period prior to his massive stroke that left him totally debilitated. It's difficult when I think back to those "dizzy spells" and wonder if he had been properly diagnosed and put on blood thinners, whether he would have been able to return to work or continued to live a normal life. But it is what it is and we deal with it as best we can. Twenty years is a long time ago, but I know when you look back on that first stroke, it's as if it happened yesterday and you wonder where did all those years go? God gave you strength to endure and continues to hold you up through all of the struggles in dealing now with the dementia on top of the other deficits, and He will continue to be there for you along with all your stroke support friends here. You are seriously overdue for a long vacation - a good month long respite where you can worry about nothing but Sue for a change. Maybe it's time to plan that Hawaii meet and greet! Ya think?? Sarah

Is that home brew much stronger than most beers? I know years ago we made homemade wine and that stuff would knock your socks off! lol Sarah