srademacher

Fred, Your situation sounds similar to what Gary was experiencing a couple months ago. His affected side was getting so stiffened up that I couldn't lift his left leg over the lip of the shower when trying to walk him two steps from the toilet to the shower. He also couldn't raise it up onto the footrest of his scooter without my help. I took him back to the neurologist and asked her to put him back on the muscle relaxers to see if that would help. We were at a point where I wasn't sure my back was going to hold out much longer with doing all the lifting, but the muscle relaxers did help. He's on a low dose of muscle relaxer that we get at Walmart for $4/month. I will keep you in my prayers and hope the Drs. will figure out something soon. Sarah

Ann, If you don't feel like decorating for Christmas, don't do it. I didn't put up a tree the first two years after Gary's stroke, finally did it last Christmas, but not planning on making all that work for myself again this year. It's too much, and when the spirit isn't in it, the body isn't willing to do it. It sounds like you're experiencing burnout and you need those breaks for yourself. I have to agree with Sue's advice regarding the emotional lability issue. Sarah

Sue, Hooray for you!!! I'm glad you got to dance. The first time we danced after Gary's stroke was at a Luau in a Hawaiian restaurant near Daytona. We stayed near our table and he sat in his wheelchair and we moved to the music. He loved it and it made him feel like he was part of the celebration. Now we don't go to the dances at the Moose any more as he gets agitated by the loud music, so no more dancing for me unless I leave him home and go alone, which would seem awkward to me. Sarah

Kim, I am so sorry for your loss. I know it's been a tough battle for both you and Chris these past few years and you've had more than your share of pain. Chris may be physically gone from this world, but will always remain in spirit. May that spirit help you to get through this difficult time in your life. Our thoughts and prayers are with you always. Sarah and Gary

Marty, Glad your turkey and fixings all tasted good even though you didn't get to carve it. Be thankful you got your rest and could spend time with the people you love. I only had one duty on Thanksgiving Day and that was the giblet gravy, while our son cooked one turkey on the grill and fried the other. It was great not to have to be responsible for all of it. LOL Sarah

Jean, I know how frightening it becomes when the chair falls apart. It happened to us on our way to the west coast last summer and I had to get Gary in and out of a motel with a chair that kept folding up on him. LOL He rode the rest of the way in the car until we got to my Mom's place in Washington (about 8 or 9 hours) until my sis and her husband could fix it for us. I can just picture you trying to pick Don up over your shoulder and carry him - LOL Sarah

Ann, I am happy for Bill that he will be coming home again, but I know how difficult your job will become once again. I also have had fears that if I ever had to place Gary in a SNF, his personal hygiene would be neglected. He, too, was always very meticulous about his looks - never a hair out of place. It's frightening to think how many are neglected who are unable to speak up for themselves. I hope you are able to find help when Bill comes home, so you can get the respite you need. Sarah

Bill, So sorry to hear of your Mom's passing. It is very tough to go through so many losses in such a short period of time. You really don't have time to grieve each one separately. I went through a similar situation right before and after Gary's stroke and I learned not to ask "'what/or who next?" Keep the faith and trust that we are all here for you if you when you need us. Sarah

Jean, I actually have some of those cutsie little tight workout clothes from before Gary's stroke - will send them if you want since I can't get past losing and gaining back the same 10 lbs. over and over again. Sarah

Marty, I'm sorry to hear you had such a rough trip home, but glad you made it okay. We also enjoyed meeting you and your wife and Kristen and Patrick. You were much braver than me when it comes to staying in N. Platte, NE. Last time we were through there was in a blinding snowstorm in Nov. of 2005 and I was determined to keep going rather than get stuck there. By the time we hit the Colorado border, it was windy, but not snowing so we kept going and got home sometime after midnight. We had left Bismarck, ND early that morning ahead of one storm, but unfortunately hit another one in Nebraska. Sarah

Jean, Sounds like you've found a great therapist to work with Don. You will be amazed at how much better he will walk in the water than on land. :Clap-Hands: "GO DON" When Gary starts to tire out from the walking, we lay him back and I hang onto his chest and we make him kick his legs to keep them going even if he's not standing up. He thinks he's getting a break, but we're still working him! :bouncing_off_wall: Sarah

Jean, I read your blog to Gary and I was afraid he'd pee his pants laughing. He knows how frustrated I get when our dog decides to get up during the night and refuses to use her doggie door to go out when it's cold or raining. At least she just leaves puddles and they're either on a scatter rug or in my bathtub, so easy to clean up. LOL Sarah

Jean, Glad to hear things are going well and you are getting back to speech therapy and doing some water therapy. We are getting Gary back into the water therapy also. It really does wonders for the balance and walking, but I've dreaded having to get into a swimsuit to help him with it. LOL Sarah

Sue, Happy to have you back. I was worried sick about you!!!! I'm going to have to get your phone number so next time you're offline for more than a few days and I don't think you're on vacation, I can call and check on you. Glad Ray had a good birthday and you've been keeping busy getting out and about with him. Sarah

I am glad you are peace with your decision. I know the time will come when I will have to do the same, but for now we continue to take things one day at a time. I hope you are able to take some time for yourself and relax a little - you've earned it!! Sarah

Sue, Going with the flow has different meanings for different people. I see it as accepting the challenges placed before us and taking things one day at a time, and enjoying what is left for us. The serenity prayer works for me - accepting what I cannot change, having the courage to change what I can, and hoping that I have the wisdom to know the difference. Sarah

I believe my husband, Gary, could identify quite well with what you are feeling. The difference being at his age he had a full career and was lucky enough to have enough years in the union that he could draw his retirement. Before his stroke at age 56, he was the picture of health and could work circles around people half his age. He was the organizer of all the family picnics and volleyball games, he worked hard at his job and at taking care of his Dad's place when his Dad could no longer do it, he loved fishing, camping, hiking, hunting, etc. I guess you could call him an all-around sportsman. Since his stroke 6/1/04, he can't do any of those things. He is right side affected, and cannot even transfer to his wheelchair without some assistance (no balance or motor control). Many times he sits and cries "why me?" He feels that his life is over and there is no hope, and I become exhausted trying to continue to motivate him, but I also understand how frustrating it must be for him that he can no longer do anything for himself (including not able to feed himself since he has no motor control with his "good" hand). Your life has been turned upside down, inside out, topsy turvey, however you want to see it, but that doesn't mean that your life is over. You pull yourself up by your bootstraps, and learn to adjust to a new way of life, however frustrating it may be. I tell my husband his purpose in life isn't complete, so he has to hang on until he's completed it. When he asks what that purpose is, I tell him he hasn't driven me completely insane with his crying yet, therefore he has to continue to work at getting better so that when he does drive me completely crazy, then he will be able to care for him as I have had to care for him since his stroke. :bouncing_off_wall: Sarah

Sure glad I wasn't driving in Boulder when you were there. :i_did_it!: HAHAHA Am happy you had a nice visit with family and hope your vacation goes well. Sarah

You've come a long way, baby!! :Clap-Hands: I bet three years ago, you never would have suspected that you'd be where you are today. I know how hopeless it all appeared to be in the beginning, and how each little improvement was a reason to celebrate. Lots of bumps and turns in the road behind and ahead of you, but you're hanging in there and we're proud of you. Sarah

Kim, So sorry you're having to deal with all these issues. I understand how frustrating it gets when you just can't keep up with it all. I've just recently decided that I need to start training someone to take care of Gary so that I can get a break - haven't had a day off since early Feb. 2005, and approaching the "burnout" stage. I had to make adjustments in the budget to allow for another couple days of 2 hr. breaks for me, and this time I'm having an agency come in so that they can get used to Gary's needs for when I take an overnight break somewhere soon (I hope). It's always easy for others to say "take care of yourself" but not as easy to do when you're up to your eyeballs in the caregiving for someone with the emotional lability that Chris and Gary have. Yesterday when I had to leave to get groceries, I got the pout face and whimper from Gary, and I reminded him again "get over it" because I have to get groceries, and I have to run errands and I can't always be dragging him and a wheelchair around to do it. We have an excellent caregiver who sits with him for 2.5 hrs. on Mon. and Wed. afternoons. Since she's not available mornings or for long-term care if I need a whole day or weekend off, I've decided to try an agency. I'm currently paying $400/month for his care and this will now double the cost, but as opposed to me "losing it," and him going to a nursing home, which will cost over $5000/month, I'm hoping it's worth it in the long run to keep my sanity. Sarah