djs202

I can feel in your note a sense of being more settled. Removing the stresses that we can makes for a better life for all. It sounds like that has been true for you. I'm sure Bruce is much happier and even more secure to have you home with him. It seems like he has made some wonderful strides cognitively over the last year or so. He is engaged with all that is going on around him. So nice to see. I'm so sorry for the untimely loss of your cousin. It is so hard to lose our loved ones so early. I've been following the weather reports in the NE. Yikes. I sure hope you end up having a better winter this year than last. Not starting out that way, is it? Hopefully, the snow removal people will stay on board this time. Thanks for the update. Take care. ~~Donna

Nancy, I just read your replies. You have been on my mind so much over the last few weeks. I am worried about your own health. Don't sell yourself short. I think you've done your very best, well beyond what most of us could handle, in an extremely difficult situation. I know you are struggling right now. Please know you are in my prayers. When you consider what needs to take place in the future, it is okay to take into account what you need too. I'm glad you are taking some time for yourself. Try to enjoy those times guilt-free. You deserve them and you owe it to yourself. Those are the very things that keep you going. I do think of you often. I'm pulling for you. ~~Donna

Fred, you sure have been through a lot. But you're doing the right things with your time--the therapies are so important. You have said that over and over and now it's the thing you need for you! Your motivation will go a long way toward recovery, as you know very well. Keep up the good work. We are routing for you! ~~Donna

It does my heart good to read of all you are capable of doing--both the wonderful vacations and the work around the house you either do yourself or coordinate others to repair. Though you still have reminders that Stroke came to visit, you are a living testimony that it doesn't always get to take control. Sure hope Leslie feels better soon. ~~Donna

I'm so glad you two found each other and made life better for all as a result. Stroke takes away so much and most of us spend time grieving the loss. I wish for so much more for you, for him, (for me and my husband too). Your younger boys will be impacted by his stroke for sure, but it might very well be that they will develop an amazing capacity for compassion and care as a result. Who knows? All any of us can do is take the day as it is presented to us and make the best we can of it. You are doing an amazing job of caring for husband and children. I know they are all feeling your love even though you, at times, think it falls short. They have love and that matters a lot. ~~Donna

Sounds completely reasonable to me! Best wishes on your return to work. ~~Donna

I do believe today marks the day, one year ago, when Lauren fell in our bathroom once again and began the painful journey through yet one more hospitalization, acute rehab, skilled rehab, and ultimate nursing home placement. It was a second compression fracture in his back that made him unable to come home. He spent November in a skilled unit trying to help him be more mobile. It became clear to me that he was not making enough progress to bring him home safely. December and January were spent in a nursing home of my choice, still with therapies to help him be mobile enough that he could transfer in and out of the wheelchair and (hopefully) get out in our car once in a while for visits and outings. By February he was permanently placed in the nursing home and all progress in mobility was lost. He gets into a wheelchair with the use of a hoyer lift and spends a great deal of his time in bed. He has had medical ups and downs over this year but, for now, he is stable. He is neither happy or sad. I know this is nowhere near what he wanted for his life but I don't know of any other option at this point. For me, I had to begin to address my own medical issues that I'd ignored over the course of 3 yrs caring for a very disabled man. In March I had surgery for a torn meniscus in my right knee. The recovery for that was several months. Then, in August, I had to have another surgery for a torn rotator cuff in my left shoulder. I am much better but still getting PT for that. Both of these injuries were a direct result from caregiving. Lauren is a bigger guy (not profoundly obese by any means but big enough). For the most part, Lauren stood and transferred at home on his own power. He needed many verbal cues to accomplish it, but I wasn't tugging and pulling on him. It was in the awkward transfers and the falls that the injuries happened. Trying to care for someone whose stroke is severe has its consequences. I'm okay with that. He had 3 years at home and I am actually quite okay with taking some hits in order to make that happen. I only wish it could have lasted longer. Now I find myself in a strange state of limbo. Lauren had a pretty big set-back a few weeks ago that had the nursing home asking me how aggressive I wanted to be. He seems to have come out of that issue but the question caused me to do some serious reflection. I am choosing not to be aggressive with his medical issues anymore. I know for a fact that Lauren's mindset pre-stroke would have been to have done none of what has taken place in the last 3 years. He has felt differently about that since the stroke so we've done treatments that have been life-saving. Again, I'm not sorry. However, right now I just want his life to be as pain free and comfortable as possible without a lot of intervention. In many ways I feel like a single person. Socially for sure. I don't have much time for a social life but I am aware that if I want to travel, go to shows, or even eat out with others, I will be doing those things differently than Lauren and I dreamed of for our retirement. Thankfully, I have a great group of friends both married and single but I must admit that it feels different now. I have discovered that more people were affected by Lauren's stroke than just him and me. Our kids, of course. What hit home pretty hard was the reaction of the grandkids to having me more available. They missed me and their lives were moving on without me. So this year has been one of reconnecting and being present for them and their activities. I still spend quite a bit of time and energy on Lauren's needs. I wish I could do more--make more of a difference for him. It pains me that I can't. But for now, I continue to just take one day at a time and try to make it the best one possible. ~~Donna

They are adorable! Grandkids are so much fun. I'm glad you were able to see them and do so many fun things. They will sure remember those good times! Every time I get to be with my grandkids, I think, "I'm creating memories for them. Let's make them good ones!" Great pics. ~~Donna

Since Lauren went into the nursing home, I have had some of the inertia you talk about. I still have him to visit, though those visits are mostly me talking. You know all about that, I imagine. I do think that after being driven by necessity for so long, the let down lasts a while. I don't want you to ever consider yourself unimportant to those precious grandchildren. My favorite Nana lived over 1000 miles away from me but her love and care transcended those miles. I saw her rarely but she still stands out as the Nana of my heart. My other grandmother lived with us from the time I was about 7 and she never came to mean more to me than the one who was far away. It's all about quality and loving completely. You mean a lot to those kids, I just know you do. I know winter has a tendency to keep us all in. Going out sounds like what you want to make your life more interesting. I'm sure you have thought of many things you could do. It's just coming up with something you want to do enough to overcome the inertia. The only advice I have is to let your dreams surface. What has been a long time dream of something you'd like to learn or do? Begin a plan to make that happen. Get something on the calendar far enough in the future that it doesn't feel like an immediate thing. Then, when the time comes, go for it. I recently bought a new iPad. Several weeks ago I got online and looked at the classes the Apple Store puts on for free. Signed up for one. Now that class is tomorrow. I would likely not go if I hadn't already secured a place. But now, I'm going to get up in the morning and head over there to learn something about the system. Then head over to Lauren for a visit. What you get out and do could be as simple as that, or a knitting class if you enjoy knitting, or a book club. I'm pretty sure you've already pondered all those things! Keep taking care of yourself. ~~Donna

Dancing Queen for sure! The Wii is just great. One of Lauren's physical therapists had him doing bowling on it. I have a friend who has post polio syndrome and is in a wheel chair. She actually does dance competitions and dances in her wheelchair along with partners who are not disabled. It is beautiful to see. She has such grace in her wheelchair. Your grand daughters would love dancing with you! It sounds like rehab has been a good choice and you are making great progress. Good to hear! ~~Donna

I was so glad to read of the increase in your EF. That is great news! The rest of this is not such great news but it sounds like you are in the right place and they are keeping a close eye on you. I hope by now the surgery has been successfully completed. Praying for a quick and painless recovery. ~~Donna

"I still seem to be in transition." It seems to me that as long as that statement is true, it is probably not time to make a decision to move. I also noticed that as you spoke about the downsizing you are considering, you mostly described the losses that would come with that move. When you spoke of your current home, it was the things that bless you in your home: spaciousness, room for the occasional use items. Of course, there is also the distance from family and that simply hurts. I'm just noticing these things. Only you can know whether they tell you to stay or go. Just the comments on your post indicate how each of us are so different in the way we respond! The most important thing is to pay attention to what brings each of us comfort and joy. For me, I have no intention of leaving our home even if I am eventually alone, which I am essentially now anyway. It is maintenance provided so I don't have to worry about mowing or snow shoveling. And it is now accessible so I can age in it. My family is close so that is not an issue, but it would have a major factor in my decision if they weren't nearby. I love our home and it has been a real solace for me in the midst of the struggles of recent years. It pains me that Lauren can't benefit from it anymore. That, however, is out of my control. I continue to think of you as you make your way into this new world that has been, once again, thrust upon you. When we are in charge of major life changes, we adjust to them much more easily, I think. It's when they come at us and gut-punch us that we are left reeling. But, strong people that we are, we make our way through and that is what you are doing. Blessings, ~~Donna

Lauren continues to reside in the nursing home. It breaks my heart but I have no other choice so I am trying to make the time as easy on both of us as possible. Of course, he wants to come home but doesn't realize that using a hoyer lift to get in and out of bed and spending most of the day in bed does not lead to home care. Months of physical therapy have gone down the drain because he can't help the aides get him in and out of bed. I really mean he cannot, cognitively, work to help them. He was absolutely making transfers with the physical therapists but went to dead weight when the aides tried to do it. They had no choice but to go to the hoyer for their own safety and his. I've given up trying to fix that and am just letting him be as he wants to be. Now the focus is on trying to get me healthy. So much work to do on that front! I hurt my knee in an awkward transfer with Lauren at the end of October. It didn't improve with time so I went to see the orthopedic dr. An MRI revealed two torn meniscus in my right knee which meant surgery. It was an arthroscopy, so not a major surgery but it was major enough for me. I'm about 6 weeks out and am doing much better. There is still some pain and stiffness but that will work out with continued exercise and time. Now it is time to address the shoulder that I can't sleep on. Rotator cuff, the doc says. We're going to start with exercises and possibly a cortisone shot. I really hope to avoid surgery again. That recovery looks to be much longer than the knee. Next up is appts to the eye doctor for vision changes and dermatologist to look at a couple of spots that are not likely to be a problem but who wants to take chances? I've been keeping up with my internist all along so I'm good on that front. Caregiving Lauren at home has taken a toll on both knees and shoulders. Still glad I did it as long as I could but it is clear that it was time to get additional help. I'm still in a time of transition emotionally. Guilt and sadness are with me much of the time. It is hard to motivate to do the things that need done. Springtime has helped, along with a wonderful visit with some friends for several days. I have a bit more energy right now and am trying to capitalize on that to get some tasks accomplished. It is still one day at a time. I feel like I do not spend enough time with Lauren and do not have enough time at home. Seems like I have one foot in each world and neither gets the best of me. But they each get what I can give and that is going to have to be good enough. I'm trying to catch up on each of you in your postings. It's been a while since I've looked through everything. Just know I think of you--both those I've had contact with and those who are new--and pray each one finds a measure of joy every day. ~~Donna

I had to private pay when I was using an aide for Lauren, but I will say that no agency I've used would have tolerated that for a minute. If there was one no-show, it was goodbye to that aide for the whole agency, not just me. Leaving in the middle of the shift? Unbelievable!!! I'm not saying our situation was perfect--we had our issues. Overall though, we had decent help and sometimes excellent help, which allowed me to do just what you were hoping to get out of your time away. It's sad that you've had so much trouble getting help. I'm glad you're working on getting Ray stronger. It is so easy to lose and so hard to get back. Sounds like he's already making some progress. ~~Donna

So sorry to hear about your neighbor. Dementia and Alzheimer's is every bit as wicked as stroke (perhaps more so). There is a recovery from stroke for so many but dementia is just a slow downward climb. It's sounds like the regular hydration has been the turning point for Dan. Your posts are so different from those of a year ago. I'm delighted he is taking an interest in his therapies. Wow! What a gift for him and you to see that happening. With the move and the hydration, things are settling a bit in your life. What a relief, eh? Yes, with those survivors who are severely affected by stroke and its aftermath, we have to get real about what will and what won't be possible. Then, we learn to highlight those things that are possible and keep on keeping on! You're doing a great job with all of it. ~~Donna

Believe me, I would be whining big time over all that snow and I love the snow. So sorry your snow removal team bailed on you at such a difficult time. I think I would end up snowbound because my back and shoulders wouldn't allow me to keep up. But I sure do understand your concern about keeping a clear pathway for medical personnel. I'm really glad people on this site are available to you--we don't want you running naked in those streets, with or without a marguerita! Think green--it will show up one day... ~~Donna

Yep, time to call in the troops. I am truly sorry for what you are going through. It sounds just awful. I'm not sure if this is even feasible, but could you rent a storage unit for a while and get help to move some of the stuff there until this mess gets cleaned up? Just one possible idea that may or may not work for you. Keeping you in my prayers. You are right--gloves are the order of the day! ~~Donna

Some days you just need to let the pity party be what it is. None of us can stay there and you are certainly not doing that. But sadness and feeling sorry for our situation is truth--even for many who haven't had major illness touch their lives. In spite of all we have to be grateful for, there are also losses we grieve over. It must be particularly hard to see Trev and Edie move away. Another loss. They are a phone call away but that only helps so much. I find myself paying attention to my single friends. Some have lost their spouses through death, some divorce, some never married. I watch how they manage their lives, how they plan for evenings out. Since Lauren went into the nursing home I feel I'm both married and living single. I'm sure you can relate to this. All family/house decisions are mine alone and any leisure activities are up to me to organize (if I even have the energy or heart for it). But, I still have my husband to share some parts of life with. I think those single women can help guide me in building fun back into my life. It's not the same, I know that. But, if I can call a friend and invite her to an evening at the symphony and dinner, it helps with the loneliness. At least, it has for me so far. But I've only been at this a couple of months--nothing like the much longer period you've been trying to find meaning for your life now. I don't know if this suggestion will help or not, or if you're already doing things such as this. I do know that Lauren and I were quite different people with different interests. In our marriage, we managed those differences just fine but that sometimes meant we gave up some activities that didn't float the others' boat. For me, one of those things was attending symphony concerts. I love classical music and he isn't inclined. On a whim, a couple of weeks ago I ordered two tickets to an upcoming symphony concert--got the best seats I could find--and invited a friend to go with me. We had a good time (no, it wasn't the same as doing something with Lauren). Truth is, Lauren wouldn't have wanted to go and I wouldn't have asked him to. I didn't feel like I was trying to "replace" our special times with someone else. I felt like I was reclaiming something that is uniquely special for me. My own thing. I'd venture a guess that you've already given this and many other options lots of consideration. You are seeing your way through this just as you did the stroke journey. One day at a time, looking things straight in the eye, allowing some time to grieve, taking a deep breath and plunging in with what needs to be done today. Repeat. Repeat. Repeat. My wish for you is that you experience many blessings along the way and that every once in a while a great surprise rises up to interrupt the Repeat-Repeat-Repeat! ~~Donna

Yes, it is interesting what strokes and caregiving does to our perspective on life. Before Lauren's stroke, I lived an active and busy life. Multi-tasking seemed essential and I often was concerned that I didn't fully live in any moment, just flew by to the next without savoring. I have often said that Lauren's stroke has definitely forced me to slow down and live in the moment. Whether challenged or joy-filled, I experienced each moment as it was. Sometimes savoring, sometimes certainly not. Sue, you are on such a journey. Your last comment really captured me. Your memories used to be ones that were shared, probably even when Ray could hardly understand what you were relaying to him. Still, the sense of sharing with another was there. Now, they are held closer within. There is no good or bad to either one. They are different and each has its own rewards and losses. I only have the beginning of a sense of what that is like. I still can share things with Lauren even though he is no longer living at home with me. But I have the slightest awareness of emptiness that you have experienced this past year. By blogging when you can, you continue to teach us. I, for one, am blessed by hearing the process of healing you are going through. I wish you all the best. ~~Donna

We are going through a transition and I am both re-energized and deeply burdened by it. As some of you might remember, Lauren took himself into the bathroom and tried to make a transfer on his own without the wheelchair brakes locked. He fell and was diagnosed with a compression fracture--the second fracture of this nature since his stroke. (In these fractures there is not actually a bone broken--the vertebra in the affected area of the back are compressed together leaving limited space between the particular bones of the spine that are affected. It is a painful injury though.) That happened the last day of October after a particularly gruesome week for me on many levels. After the firefighters came to get him up, I tried to keep him home but by the following day, I couldn't even get him up out of bed so on Nov 1 he went into the hospital. He hasn't been home since. Since that time Lauren has been in the hospital, inpatient rehab, nursing home rehab, hospital, back to rehab, hospital, back to rehab. That is where we are now with an expectation that he will transfer to a nursing home bed next week within the same setting where he is currently getting rehab. It has been a weird and difficult transition. He has done well with rehab recently. He transfers easily with physical therapy and me but the aides have continued to have some trouble so, no matter how much we try to get rid of the hoyer lift, it keeps finding its way back into the room, much to my extreme irritation. There are some aides who have shoulder injuries and I totally get that they need to use it. Once it's there, however, everyone keeps using it. So this is the next thing I'm going to have to address with the director of nursing. I'm done with dealing with all the others on this matter. Aside from that irritation, the place where Lauren is now is exceptional beyond words. It is a different facility from the one he has been in before and it has a 5 star rating from Medicare (the highest that can be achieved). Everyone treats him with the utmost respect and kindness. They have a chef on staff and are contracted with a local restaurant company owner who provides the food and menu. Residents can order their food like at a restaurant from a menu and get pretty much what they want within the limits of the menu. Every problem I have addressed has been corrected immediately with the exception of the above. Of course, the place is expensive beyond words too so I have personally committed to 2 yrs (just in my own head) to see how things go and how long I can afford this place. For now, it was essential to find an acceptable facility to ease the transition for him and me. In some ways, I keep thinking I can bring him back home. Perhaps that will always be true, as Sue once said. Actually, I know I could physically do the work better than they do...for a while. The problem is that it never lasts. I have gotten injured and Lauren has made devastating decisions and there are the many UTI's that continue to plague him. The problem is that I am only one person and right now he requires multiple people to assist with all his care and they get to go home at the end of the day. Every single person around me who really cares as well as his rehab doctor, who knows him best of all, feel I need to make this transition. Most of them have felt it for the last 3 years. I feel I need to make this transition. So why does it feel so rotten? For me, when I am home I feel I need to be with Lauren. When I am with Lauren, I am thinking about all the things that need to get done. I'm trying hard to balance those issues but it is difficult. I have a lot more freedom with my time--the ability to agree to do things outside of Lauren's care--but with that is the guilt that my increased freedom comes at the cost of Lauren's freedom. His confinement makes for my freedom. Not fair and not right. I can't make it okay. However, as the physical burden of Lauren's care has been relieved, my own body is now screaming at me. I twisted my knee in a transfer with him just a few days before his fall. I've been trying to let time heal. It has improved a lot but still pops and hurts when I straighten it out. Left shoulder hurts at night so I can't sleep on my left side. Wake up with low back pain. Just remembered I've failed to get my colonoscopy--one year past due. I had polyps once so I really need to keep up on that. Oh yes, haven't seen the eye doctor since Lauren's stroke and i have growing cataracts. I know you caregivers understand this. I finally saw my internist and am getting an MRI on the knee. Taking lots of Advil per her instructions and we'll see where to go from there. Next up, I need to schedule that colonoscopy. Oh, and it might be good for me to take down the Christmas decorations. Too soon? Keeping on keeping on. ~~Donna

Really, all I can say is WOW and then WOW again! That is a boatload of stress you got there. Literally and figuratively! Takes "Raindrops Keep Falling on My Head" to a whole new meaning. Sadly, in this case it was snowflakes as well. Good news--you'll get a new roof and ceiling for all your trouble. Maybe you can convince dad and aunt to do an entire remodel of your room? Well, one can dream, right? I have been thinking of you so am glad for an update, although not at all glad for the trouble you've been having. Take good care. ~~Donna

It seems to me that there is very little that is linear in stroke recovery. There are improvements and then set backs that take us backwards a bit. I know you have seen some wonderful improvements in Bruce. His cognition seems to be making leaps. Then...he pours juice into his cereal. Who can figure it out? I don't even try anymore! I'm glad he checked out ok physically. Yes, safety is such a concern. Those cognitive leaps are welcomed but they do seem to come with poor judgement as to safety. You are doing such an amazing job with Bruce. He feels loved and cared for. That must be such a solid foundation for him in his recovery. You provide him with a sense of safety. That makes things crazy for you at times because you are aware of this. Keep trying to care for you as well. You know this. I know you do, but when we are caught in caring for the one we love, it is easy to sidestep our own needs. Do you have enough spare change to pay someone to shovel for you? Some with snow blowers can get the job done so quickly. I know when it just keeps snowing that is a never ending process. Maybe someone else could at least take the burden off a few times and make it easier for you to keep it off. Just see this as a nudge to think of ways to make it a bit easier on you too. Keep seeing the green--it WILL arrive one day! ~~Donna

Thanks everyone for your kindness and care. I take to heart your guidance to be guiltless and, yet, I remember Sue stating at one time that you are never really free of the guilt when you are making these unpleasant decisions. I think that will be true for me but I do try to keep it at bay. Nancy, it's that fire in you that keeps you being such a fierce and diligent caregiver to your Dan. I love it and I think you're a rock star caregiver. No doubt! This has been my decision. I mentioned the ER doc because he has seen us twice--both times when Lauren had a compression fracture and I got the lecture both times, a year apart. The first time I was really irritated for all the reasons you mentioned. The second, I did see the truth in what he was saying even though not yet ready to give in. I think we have to rely on all the input we get in order to stay honest. We might not like what we hear but we have to consider it first and then reject or accept it. I think most people are trying to be helpful even if they often miss the boat. I know it's time for us. Others might make a different decision, I don't know. These last several months he has been in the ER and the hospital and acute rehab and skilled nursing home care and home health PT and outpatient PT more than he's been free of it. It is getting worse not better. He needs to be where a doctor can be consulted quickly and several people are available to help him when there is a need. Just the other day in rehab, he started to slip out of his wheelchair. He didn't actually fall to the floor but it still took 4 people to get him back in the wheelchair. I will continue to be Lauren's advocate and loving support. And I will continue to check in here. This site is strongly geared toward managing stroke recovery at home, as it should be. But a few of us have to do it a different way and that is the truth about stroke recovery too. So glad for all of you and this site. Helpful beyond words. ~~Donna

I know I have been silent lately. I've been doing a lot of reflecting and thinking. A few caregivers here have seen improvements in the cognitive status of their loved ones and seen functional gains, some small and others significant. I've wondered if I was somehow holding Lauren back and not giving him the freedom to succeed. Meanwhile, some cognitive gains and continued hospitalizations for UTI's and assorted problems. One day I am in the kitchen reading the paper. Lauren is in the living room watching TV--open concept home so I should have heard but didn't. He decided to roll himself into the bathroom and try to transfer himself to the toilet. Without applying the brakes on the wheelchair. Without getting help. I decided to check on him in the living room--not there. Went on in to the bedroom--not there. On into the bathroom--on the floor softly knocking to get my attention. Ambulance call to help get him up. He wasn't complaining of pain so we decided to keep him at home. Next morning, I can't even get him out of bed. Another ambulance call to transport him to ER. Compression fracture of the mid back. Another lecture from ER doc about keeping him at home. "We are going to admit him but they are going to have a serious talk with you about nursing home." Okay. Fine. He has been in an inpatient rehab unit once again. This is the third or fourth rehab visit in three years. I think 4th. He is not making any gains at all. Just getting him to stand up is a major ordeal. They are using a hoyer lift to get him in and out of bed. Now, he will stand up for me but it is still much less functional than he has been. I have decided it is time for full time placement. It looks like he will get some additional rehab time in the nursing home unit before he moves to nursing home care. His needs are so complex both medically and physically and now I can't even trust him in the other room without me. I'm tired and just can't do any more. I have found a new facility that I feel very good about. It is expensive but I think it will provide good care and opportunities for mental stimulation that I am happy to see. It is a sad time. I had so hoped to not be forced to come to this point but I don't see any viable alternatives right now. I sure hope he will adjust well to a new setting. ~~Donna

All the best to you, Leah. You have the will to improve. What you've been asking for is some help along the way. This sounds like a perfect solution. We need doctors who care and respond when we ask for help. I sure hope you find someone who does that once you get out of rehab. May this rehab unit see your potential and maximize your therapies so you can be independent again. ~~Donna