djs202

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

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

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

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

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

Nancy, please be "selfish" because that time away is what enables you to continue on as your best self. It is really not selfish. It is doing what you need to do in order to be a good caregiver. When I have time away I get refreshed enough to look forward to bringing Lauren back home and I manage all his care so much better. It's a gift you give to yourself AND Dan. ~~Donna

What a beautiful description of a bittersweet trip. Laughter and sadness need to be part of such an experience. It sounds like a wonderful way to thank Jeff as well--let him see a different side of the man he cared for. I often want to help those who only know Lauren post stroke to see him as I knew him before. People loved my husband and his generous spirit.

Thank you so much for continuing to check in and let us know how you are. I think of you often. ~~Donna

How wonderful that you were able to turn a negative situation for you into a benefit for others. Your willingness to share your knowledge and personal experience with stroke/brain injury provided others with much needed resources. Additionally, for just a moment they were not alone on the journey. The world needs a lot more people like you!~~Donna

You did it! That is a major accomplishment from my view. Sounds like your part was well in hand but the hotel needs to step up quite a bit better. You both seem to have taken it all in stride and still had a good time. I totally agree with you about how to start taking trips. Short ones help you learn the typical obstacles you are likely to encounter and what you need for a successful trip. You also learn what Bruce can and cannot manage. Little steps. Now is the time for the education of hotel management about what accessibility should mean. Although Lauren and I have not traveled together since stroke (and I doubt we ever will be able to), I scope out facilities for accessibility and most of them would not work for Lauren AT ALL.

You and Bruce have made some great advances over the last few months. That is just wonderful!

~~Donna

Such a wonderful change for both of you. Amazing what a bit of fluids can do! (and what the lack of them can do). I hope the improvement is long lasting. ~~Donna

It's so good to see you blogging/posting! I don't know if your fatigue is the reason for less posting but I find there are times when I just don't have the energy to respond, and I don't have the heart issues you do (well, at least not the heart muscle issues! ) I still care and always appreciate reading everyone's posts but just can't muster up the strength to reply.

I love that the shih tzu has found a safe place in you. How cool is that?!

I'm glad you are noticing some stronger days. I hope it's a sign of good things to come. ~~Donna

Katrina, I have never experienced you as rude. Truth is, sometimes we just feel awful (whether we are caregivers or survivors) and this forum should be a place where we can let it all hang out. Where else? I'm so glad you continue to stick with us all and keep reminding us of how you feel. Honestly, I can't imagine what it must have been like for you to go through adolescence and early adulthood with stroke recovery at the forefront. Very few survivors have had that experience.

I am really happy you are getting an EEG--the 3 day kind. I think this is what you've been needing to get some answers as to what is going on with those seizure-type episodes. I sure hope the test reveals some answers for you. This has been going on long enough and has a serious impact on your wellbeing. I'm so glad you're finding some medical folks who seem to be in your corner. You need that.

Keppra seems to be one of those meds that does wonders for some and creates havoc in others. My husband has been on Keppra since his seizures began and it has been good for him. No Keppra rage, no increased depression, and his seizures have been under control for some time now.

Take care, Katrina. You have a lot to be proud of. ~~Donna