djs202

Sandy, compression fractures are different from other types of fractures. The bone is not broken. Two of his vertebra in his spine are compressed together and it causes the material between the two bones to bulge out. It causes pain for anyone but the key to anyone's recovery is to continue movement while it heals. Sometimes the back needs to be supported and they would definitely not want heavy lifting during recovery for anyone. That's not an issue for Lauren. He just needs to continue to bend forward and stand. You are certainly right that these kind of things in stroke survivors adds an extra level of difficulty. Most people without a stroke or other disability would not likely require rehab to recover but they might need outpatient PT. The goal of rehab for Lauren is to keep that back limber enough to enable him to stand and transfer. If he stops using it for 3 months he will likely not be able to get out of bed on his own power again. I don't think they are expecting more of Lauren than they should. I think everyone is fighting hard to keep him active enough to maintain an adequate level of movement so he won't lose any more ground than is necessary. The most negative impact of the stroke in all this for Lauren is his inability to power through discomfort. He lives very much in the moment and, if it hurts now, he can't look down the road and see that the gain is worth the pain. He wants to go home but can't make himself do the things that will get him there. Discouraging--but it is what it is.

"Hope magnifies what expectations minimize." If that isn't a nugget that helps, I don't know what one is. Hope has to be the thing that keeps survivors and caregivers going. I know that, for me, hope is even underneath my times of hopelessness. I have been reading your postings for a while now. I've probably missed plenty but I have to say that I haven't read anything of yours that sounds like a lunatic. It may look that way to you when you re-read past posts but it doesn't come across that way. I know I often think I've said or done something horrifying and, when I check it out with the others involved, my interpretation of their reaction is all wrong. None of us has this particular journey figured out. I know I sure don't. I think that's what makes this site so helpful. We are all stumbling along, doing our best to respond to a catastrophic event (or many) in a way that brings healing and renewal. Thanks for your wisdom. Keep on blogging and posting. You do help and make a difference. Donna

I've avoided writing anything for a couple of weeks because I simply didn't know what to write and have been more than a little overwhelmed with what is going on. Lauren's sister came for a few days to give me a holiday. She has done this before a couple of times and it is so appreciated. I always get private duty aides for every night she is with Lauren so she doesn't have to put him to bed and get him up in the morning. A couple of days before I was to return she called me and said she couldn't get Lauren out of bed. He simply couldn't stand at all. She called 911 and he was placed in the hospital with a UTI and a lumbar compression fracture. This is a new compression fracture but there was no event that was known to cause it. I assume he took a harder than normal landing on the stool since one of the aides wasn't as familiar with him as the other one. The UTI was probably causing him to be less balanced than usual. I don't blame anyone for this--it just happened. After several days he seemed to do better and I was able to transfer him to and from the wheelchair so we came home. Next morning I can't budge him an inch. I had Home Health PT who helped me get him up that day but the next day was the same and even she had trouble moving him. His tone had kicked up so severely that he wasn't even able to bend at the waist. It was like the tone has now affected his torso as well as his arm and leg. Long story short, he is now back in the inpatient Rehab unit he was in after his stroke. He's been there a week and has this coming week approved by insurance. He has not made much progress at all. He won't even lean forward without much coercion or actual force. He requires two people giving maximum assist to transfer anywhere. He won't stay up in his chair any length of time. Spends as much time in bed as they will allow and constantly hassles them to put him back in bed when they make him stay up. The unit uses a scoring system to determine his level of independence. He is the same score he had when he entered the unit immediately after the stroke and was totally dependent with everything. It's all very disheartening. Since he's not making adequate improvement, it is likely they will not approve a longer stay in Rehab. I'm looking at skilled nursing homes to move him to. There's no way I can care for him with the level of assistance he needs and his unwillingness to push through his pain for mobility. He's being medicated for pain as much as possible without knocking him out. He's getting increased meds for the tone. Lauren has never really engaged in the process of recovery. He generally does what he is asked to do if it doesn't require too much effort but there is no carry over to learn a task and repeat it on his own after time. Two years post stroke I am still giving him the same cues for the same tasks every day. I know he has a compression fracture and I know it will take several months to heal. What I fear is that this is the end of him being at home. If he won't work to recover, the result is going to be that I can't manage him at home. He's 64 years old and completely aware of his surroundings. I can wrap my brain around a short stay in a skilled unit even though I hate that. But I'm not ready to wrap my brain around a nursing home stay from here on out. It almost makes me sick at my stomach to think of it. It would be different if he wasn't so aware. It isn't that I believe he will have lack of care because I will make sure it is a highly rated nursing home. It is that he will be living with people who are 15-20 years older than him who are generally much more mentally impaired. Bingo and singing songs from the 40's just won't interest him. I am heart-sick. Donna

That's a pretty incredible combination of things to deal with in such a short time. Completely "not fair!". It sounds like you have a good handle on how it needs to be monitored. My husband had his stroke almost two years ago and he has had a wide variety of ills since then along with the stroke that has left him seriously incapacitated. Sometimes it feels like he's been in the hospital or other facilities more than he's been home. Stinks. I hope the MRSA is making a fast retreat and you are able to stay home. Donna

So sorry to hear of Ray's seizures and falls. He sure has had a time lately and you with him. I hope his birthday is celebrated in comfort among his loved ones. Those seizures are wretched things! You remain in my thoughts and prayers as you try to regain a sense of equilibrium. Donna

I'm glad you've gotten moved and that you find it beautiful. You've given this a lot of thought and it sounds like you believe it is the right thing to do for both you and Dan. Just stick to your guns on this one and Dan will eventually adjust. It must feel pretty overwhelming to have both a new place to adapt to and a farm to ready for sale. I hope you have some helpers for that task. Take a few minutes every day to just savor the good that this move has brought you. Enjoy the beauty of your new home! Donna

I'm sending my support to you as you struggle through that deep pit of loneliness. I expect the weather isn't helping a bit. I am a loner by nature and have often felt I would be fine if I was ever alone. However, now that the possibility is closer to me, I have had glimpses of the kind of loneliness you speak of and recognize the sadness that comes with it. It sounds like you've done what you can to reach out. I hope others will respond soon and give you a good night out for dinner and a visit. You don't have to carry the added burden of being upbeat all the time. No one feels that way all the time even if your general attitude is one of looking on the bright side. It sounds like you are going through a little bit of grieving for what is lost. We who are caregivers do that in bits and pieces don't we? You have had an abundance of losses with Ray going into the nursing home and it is natural that you would grieve. Continue to take good care of yourself. Please do get that massage or anything else that would give you a lift. You certainly deserve it. Donna

I don't think I would have been patient with Leo as long as you have but I know your motivation for keeping him on was because you believed it was a good bond with Bruce. You gave him every opportunity to step up and do his job. Seriously, I can't believe he had the nerve to leave Bruce alone and go run any kind of errand. I can certainly understand your anger. I'm sorry to hear about your own health issues and the need to be more attentive to that. We want to think we are invincible and will always be able to care for our loved ones. Best wishes on finding the perfect set of helpers to meet both your needs.

I can affirm that you are doing the right thing. Your mom will not benefit from you falling apart. The description you gave of the life you had before hiring additional help is just not a manageable life. Your health is suffering as a result. Your mom probably isn't able to understand what you are going through. I know my husband has become pretty self-centered since his stroke. He was always very thoughtful prior to his stroke so I believe the change is stroke related. You know your mom best. It might be that a change in routine is unsettling for her or it might be manipulation. In either case, your response is to continue to do what you know is best for both of you. You care for her best by also caring for yourself. It's required. I am speaking as a caregiver who also has to provide 24/7 care for my husband who needs assistance with just about every activity of daily living. I hire caregivers too and, thankfully, have family and friends who have stepped up to help. My approach in your situation would be to simply continue to greet her as you normally would. If she doesn't speak, continue to speak to her in a conversational way as you are able. Stick to your guns about the hired caregivers. Be sure they are doing their jobs well and then let them do them. It probably won't help to try to cajole her into accepting this change. Simply give her the information about what to expect each day and then let it go. Once she knows its not negotiable, she may settle down. Now, make sure you start having vacations, birthday celebrations, dinners out with just your husband. Spend time with your family. It will make a world of difference in how you cope and even in how you care for your mom. I know it's not easy but it sounds like it's pretty important for you right now. Best wishes, Donna

Lauren came home yesterday afternoon. He was started on Keppra. It makes me nervous to use anti-seizure meds and nervous not to. He's on Coumadin so another seizure does not sound like a good idea if it can be avoided. Ruth, I also thought Lauren was dying. We had a private duty aide here who was helping him with his shower when the seizure occurred so, by the time I got to them, I only saw the end when he was unconscious and breathing very noisy. In the flurry of getting to a phone to call 911 she didn't tell me about the seizure until I heard her talking to the paramedics. I honestly thought he was taking his last breaths. He didn't begin to respond in any way for over 30 minutes. Even the ER was uncertain whether something additional was going on. CT showed no change. Lauren has been in the hospital 5-6 times since his stroke Dec 2010: viral meningitis, 2-3 UTI's requiring IV antibiotics, sepsis (ICU with that one), seizure. They have all taken a toll on me but this one has really got me reeling. I think it is because I seriously thought it was the end. Also, there is no way to say this medical situation is over. You discover the meds aren't working by going through another seizure. So yes, eggshells. Whereas I once felt fairly comfortable taking Lauren in the car with me if I had a quick errand to run and leaving him in the car while I ran into a store to pick something up, now I won't do that. I'm even scared to leave him sit on the toilet stool alone but I have made myself step away for a few minutes. I don't yet feel comfortable taking a shower while he is sitting up in his wheelchair. Sue, thank you for lifting up the way these struggles bring gifts. Not ones we would choose to receive in this particular way but I do know each of us are strengthened by our caring and we call on new and creative parts of ourselves to make it through--not just to survive but to thrive. That's what we want for ourselves and also what we want for our loved ones. As much as is possible within the limitations they have, we want them to thrive and enjoy live. Thanks to each of you for understanding and for your good thoughts and prayers. Donna

They say when you learn to live with Stroke, you must find your "new normal". Most of us don't particularly like the aftermath of Stroke and we spend some time resisting the new life we must lead. The only thing I know about "new normal" is that you wave goodbye to it as you speed by on the roadway to wherever Stroke is taking you now. Lauren had a grand mal seizure yesterday morning and is now back in the hospital getting regulated and dealing with a low blood pressure. The event itself was very scary and quite dramatic. In the end it is a stroke-induced seizure disorder. Thank you, Stroke.

Thanks Debbie, Susan, and mc for your responses. It's been quite a day. Lauren had a grand mal seizure in the shower this morning. We had a private duty aide last night and she was the one with him in the shower. By the time I got there, all I saw was him laid out on the shower chair unresponsive and with seriously labored breathing. I thought he was going. He's in the hospital overnight and then we'll start dealing with stroke-induced seizure disorder. Every time I think I can't handle any more I get more to handle. The reason Lauren has a catheter is not really because of the incontinence but the retention. Every time we try to remove the catheter he goes back into retention and can't pee at all. It's pretty awful. His tone kicks up and his left leg goes rigid. One time I couldn't get him out of the car and had to go to the ER where it took 4 people to pull him out backwards because his leg wouldn't bend. Now it doesn't take much urine in his bladder to make that happen. I'll talk to the urologist about ditropan. He's on Toviaz, which is supposed to relax the spasms he has. Without the med his bladder is in an almost constant spasm. Thanks again. I'll look back over your responses when I stop reeling from the day. Donna

I'm making my first attempt at blogging because I have some decisions to make and could use some input from those who have experienced what we are going through. My husband, Lauren, had a large right sided stroke in Dec of 2010. He has many deficits, is wheelchair level mostly, and requires full time care. He can walk with help of one person and a second to bring up the wheelchair when he tires. He is not strong enough to walk functionally, only to get him up and keep trying to increase his strength. He needs help to transfer, bathroom, shower, dress. He eats independently and can brush his own teeth and shave. The rest requires help or cueing to accomplish. He has been incontinent pretty much since his stroke. For a while he was able to make it to the BR occasionally but never consistently. He has an enlarged prostate that complicates everything. Our biggest medical problems since stroke have been related to bladder infections. Several months after his stroke he developed retention which caused severe reactions in him. His spacticity (tone) kicked up big time and he was just wild with discomfort. A trip to the ER and his first catheterization yielded an output of 800 cc's. Every effort to get him off the catheter since has been unsuccessful. So he has a catheter in which causes repeated UTI's that require hospitalizations and IV antibiotics. The last one was urosepsis--it got into his bloodstream--and he was very sick. The urologists say the retention is a result of his stroke. We went to a specialized urologist who works primarily in bladders affected by neurological issues. He had nothing to offer us. Lauren has an overactive bladder and our options are catheter or have me straight cath him routinely throughout the day and try to leave the long term catheter out. If I choose to straight cath him it is likely he will "leak" so will be regularly wet. The option of doing the catheter through the abdomen (suprapubic) is apparently out because he has previously had a diagnosis of bladder cancer and if the cancer ever returns, there would be an open portal from the bladder to the other organs. Here's my dilemma: I have worked out a process of help that allows me to get away about once a week (his sister comes and stays with him) and I have a private duty aide who comes 3 nights a week so I can get sleep. She also showers and dresses him in the morning. Neither of these helpers will be able or willing to catheterize him. His sister had to do some heavy thinking to decide she would be able to help bathroom her brother. My daughter is the next level helper--again, how can I ask his daughter to catheterize him? So my entire support system will go out the window if I choose that option. This, of course, is the option the urologists want me to choose. To them, getting the catheter out is what needs to happen. Obviously, I want the infections to stop too. But I'm not sure I can handle the consequences of that choice. Keep catheter in: he is dry and skin breakdown is kept to a minimum. Helpers around to ease the burden. Infections cause him to have multiple runs in hospital and IV antibiotics. Risk for him to someday develop a resistance to the antibiotics. Take catheter out and straight cath as needed: leaking will lead to additional issues with skin breakdown, support system out the window. Minimize UTI's thus decreasing hospitalizations and IV antibiotics. He is on Coumadin so continued straight cathing throughout the day increases risk for injury and bleeding, especially with enlarged prostate. In a about a week I will be taking him to the urologist again for a catheter change (has to happen once a month). I know he will be pushing me to try the straight cath route. Any wisdom to offer me as I consider these options? Donna

My husband, Lauren, has central sleep apnea, diagnosed after the stroke. He not only has spells of apnea but also simply stops breathing and goes for up to 30 seconds without taking a breath. He has a BiPap which adjusts to these episodes with an increase in the forced air that makes him take a breath. He uses the mask that covers his nose and mouth. I thought he would never tolerate it but he has done pretty well. He will still have nights when he pulls it off but mostly he leaves it on and sleeps much better as a result. Our machine is not noisy at all unless there is an air leak in the mask. I have to get up and adjust the mask and the noise goes away. Lauren has a catheter so doesn't get up at night very often. I will say that he doesn't have any trouble at all taking it off, but I have to turn it off or put it back on for him. But he is pretty dependent in every area of activities of daily living. Not much he does on his own. I rest much more comfortably when he uses the BiPap. Those long pauses with no breathing scare me a lot and keep me awake more than any other thing. I hope Larry is able to manage his on his own. There is an attachment on Lauren's that can disconnect from the machine without taking the entire mask off but I don't know if that is on all of them, or whether it would feel weird to leave the mask on while going to the bathroom. I hope it goes well for you both. Donna