djs202

You really are doing so very well, in my opinion. I have complete confidence in you to navigate this major transition with grace and wisdom. I am already seeing it in action. I love that you are willing to wait in the "in-between" time for greater insight into what should be your next step. I do hope you allow whatever time is needed before you plunge in to a more active life. There is still so much to process and your body needs rest. You will know when it is time to move into more activity. As long as there is hesitation, it's not time. I say this to you (perhaps not true for others) because I sense from your writing here that you have had a very active life with many gifts and an abundance of ways to use them. Even in the midst of your own major caregiving responsibilities, you accepted other responsibilities that were a fit for your interests and skills. You are accustomed to being busy and I am sure you will return to that way of living. When it's time. Many years ago I went through a pretty depressing time. It was hard for me to get enough energy to do anything and my whole world seemed dreary. I'm sure many people go through these times, even without all the stressors we experience from the results of stroke. I remember so clearly one spring morning when it was over. It was really like night and day. Suddenly, the sun was shining and the grass and trees were green and I was in love with life again. I was ready to go forth again with energy and joy. I don't know that everyone (or you) will experience their readiness to leave the "in-between" time so starkly but I was reminded of that time and thought I'd share it. I don't yet know how you come to grips with being alone. I have always been a loner so, in my mind, I think I'll be okay when/if that time comes for me. But I sense that I have no idea what the aloneness is like when our spouse is gone and we are left to face the world in a new way. Here's what I do believe: you are strong; you are wise; you are supported; you are loved; you will find your way through. ~~Donna

It is so hard to be the friend we want to be when we are caregivers. I felt the same way when my friend was dying of cancer. She had people around her and good family support. But I wanted to be there too, with her, giving support and love. I was able to spend some time in her last month because Lauren was in Rehab and then the nursing home so I went to her more often. Would it work for your friend to come to you sometimes? She might welcome the break. It would still provide her with the support she needs but allow you to be home with Dan. Not sure he'd tolerate that. You'd know best about that. I know you are feeling so much care for those who have been lost to this world and their loved ones. Just be sure to remember that this is your loss as well. People who have been a support to you are now unavailable due to tragic circumstances. This is such a difficult time for you. And now even more. I know there are very few moments just for you but if you can snatch a few minutes here and there to just do something wonderful for yourself, it will help you get through. If you have family in for any reason, take a few minutes away even just in the house. Good hot bath for yourself, cup of coffee and a good book or magazine, sit outside if the weather permits. Anything. Just a few minutes for you. My good friend who died was one person I could talk to about anything. We shared with more depth than most of my friends. I had been given a Willow Tree figure that had two women sitting together talking. I put that up on my mantle for the whole of December. A way to keep her in my thoughts and honor the relationship we had. A way to recognize that our relationship transcends this earthly life. You continue in my prayers every day. You do seem to be living a tragedy right now. One day at a time and you will live your way into a smoother life. Hang in... ~~Donna

Best wishes for a wonderful day! Happy birthday, Bruce! ~~Donna

Yes, you do need to go to your brother. I'll certainly be praying with you for his peace and freedom from anxiety. So many things we can't change. But you are being present to your family who need you and they are blessed by your love. Know that this is enough...even more than enough. Love transcends all. ~~Donna

I was worried there would be a set-back when Dan came home. So sad it happened. Really, Nancy, you have way too much coming at you. Way, way too much. I want to whisk you off to a desert island for a week with no cell phone, no contact, and lots of the best food on the planet and a massage every day. I sure hope this new psychiatrist understands stroke issues. The two are so linked for Dan right now. I will say this. I wouldn't be able to do what you are doing with Dan lately. I know I would have to place him because I would absolutely fall apart. I'm not saying that is what you should do; I'm just sure I would have to. So I give you kudos for holding it together as best you can. I'm sorry for the loss of your friend. You may remember that my very good friend died just after Thanksgiving. It's hard. You and Dan continue in my prayers. I hope for easier days ahead. ~~Donna

If you have a neurologist you see regularly, it might be a good thing to run this by that dcotor. Your description sounds like a seizure to me, but who knows? If it was, there might be a need for some adjustments to your meds. I do know that seizures can be fairly mild or huge grand mal types. Sorry for the challenges you are facing. It does seem like many are going through rough times right now. Hang in there, best you can. ~~Donna

You guys just can't catch a break. So very sorry for all you've been through. I have had several occasions to have "the conversation" with our kids. It's not easy, but on this ride we have to be prepared for every possibility. Keeping you both in my prayers. ~~Donna

Jamie, I am so sorry to hear your news. Just stinks. It would definitely rock my world. But we all know about that, don't we? It does sound like there is quite a bit more evaluating to do and that may give different answers. Clearly, there is something going on that brings the doctor to that conclusion. I say, good on him for listening to you and being honest. You asked for it and that's what he gave you. He also qualified it but he treated you like you wanted to be treated. Just remember that a lot can change in 5 years in medicine. I was an ER nurse for a number of years and took 5 years off to raise my kids. When I went back, we were able to give medications to people having a heart attack that reversed the damage before our eyes--changed the EKG back to normal. It was stunning to me at the time. Now, of course, that can be done for some strokes as well. We couldn't do that when I left and we could 5 years later. Certainly no guarantee anything like that will be true for you but there might be something on the horizon that can shift your outcome too. Of course, as you have already mentioned, this same transformation is going on in the world of prosthetics as well. There are much better options now than there used to be. I wish you all the best as you go through the additional visits and testing. I'm so glad the transportation has worked out! That gives you so much more freedom to get out when you need or want to. You will be in my thoughts and prayers (if that's okay with you...). ~~Donna

Lauren's stroke was caused by a clot in the base of his heart. The cardiologists told me that Coumadin does not, in itself, dissolve clots. It helps keep clots from forming. They said the body eventually absorbs clots and it is likely the clot in the base of his heart will be absorbed. Just have to hope there is not another stroke while it absorbs. Plaque is what often develops in arteries, causing a restricted blood flow which then can cause blood clots. I'm not sure what would cause an occluded carotid to open unless it was this absorption process. Sometimes plaque breaks free but that doesn't have such a great outcome. It is a good question to ask his internist, neurologist or cardiologist. Then let us know what they say! ~~Donna

Glad for the surgeon who saw the whole picture. Yes, I'd say an INR of 6.99 is enough to be scary. Lauren's has gotten as high as 5 and I was shaking in my boots with that. I hope you're sound asleep as I write this. Good for April. Sometimes our kids really do know best! Take as much advantage of the time as you can. ~~Donna

Nancy, I just have no words. I wish so much to have something to offer but you know best of all that there is not much to be done about this. You are right about needing to have a medical issue before calling for help. One thing about it is that, soon enough, a seizure will be the issue that gets the 911 call activated. You have learned long ago that reasoning with this behavior is useless. Whether it's dementia, OCD, depression or a combination of all those, reasoning doesn't seem to change anything. Just the OCD alone is pretty immune to reasoning if the person is caught in the repetition. With you in spirit, Nancy. ~~Donna

The anti-seizure meds do increase sleepiness, especially at the beginning. It should even out once his body gets used to the increased dose. Not a bad thing to check out other possible culprits but it is probably the med increase. We've increased Lauren's Keppra once and he was quite sleepy for a couple of weeks. It wasn't to the level of Friday night to Sunday morning, though! But Dan seems to do things in a big way, right? ~~Donna

Mary Jo, how difficult this sounds. I'm so glad you've taken the step to get help for bedtime. It's a small amount of time but just to off-load that task will provide a bit of respite. I hope you get rest too. For me, when significant lack of sleep becomes an issue, everything else goes south. Lauren had sepsis once too. Very serious stuff. He was one step away from a ventilator with that episode. Keep us posted. I wish I could help somehow but I can only care. So sorry for all you are facing. ~~Donna

My goodness. What an ordeal for both of you. That switching the anti-seizure med so suddenly doesn't make sense to me either. Sure hope he settles down before you bring him home. ~~Donna

Sue, I'm sorry your holiday was rainy and gloomy in more ways than one. Still, there was a connection with family and that had its moments of joy. I do wish you had been able to have that sit-down talk with your daughter. Perhaps that will still be available to you and her in the near future. My guess is you both would benefit from it. It sounds like she is working on overload and must be exhausted. Time for Sue. Others might need to know you are needing a bit extra right now. Any friends you could call on to bring some chicken soup and a bit of love? I know--you'd rather not have to ask. But often others are waiting in the wings, willing to help but not knowing how or when. If that's not possible, well, you gotta go for it yourself. What would a "nurture Sue day" look like? Put something into tomorrow that's completely indulgent. Some days it really can be all about you. ~~Donna

Congratulations on moving forward in getting the house sold. It sounds like it will be a big relief when that part is completed. I wish you the best in getting it sold, as is. It's always a bit hard for me to know what to say about stroke anniversaries. They are definite markers that need to be acknowledged. Also, we all know that making it to that anniversary means we have been on a long and often challenging journey. So I celebrate the effort and success of both of you and wish for continued recovery. ~~Donna

Lauren had a mask at first and didn't do well with that. Then he switched to a nasal cannula that goes into both nostrils and he is tolerating it better. He still doesn't like it and occasionally pulls it off but mostly he leaves it alone. This is not negotiable with me because his sleep apnea is severe and life-threatening so it is as important as any other thing we do. I'm glad it's working out to do these tests in the hospital. I think you will find it much easier to do and I would guess that the technicians are a bit better trained for more complex medical situations like stroke. Good to hear the update! ~~Donna

Before stroke, I was always the "go-to" babysitter for my two oldest grandkids (now almost 6 and 8). The youngest two are twins who are almost 3 and live about 2 hrs away. I spent a lot of time with my youngest daughter when the twins were born and expected to make frequent trips there to help out. Then stroke took that all away from me. It has been one of the most heartbreaking aspects of this stroke journey beyond the heartbreak of seeing my generous, active husband so severely impacted by his deficits. Thankfully, the twin family come and stay with us often so I do get to see them but the older two don't have the easy relationship with us they used to have. I still see them often but it isn't quite the same. Still, we make time to get together as family as often as we can and that keeps the relationships alive. I'm so pleased you were able to pull off that week with Weston. It is a lot to take on and, yet, it is so special and I can tell it has brought you joy. You are doing an amazing job keeping up with all you do and maintaining family and social connections as well. ~~Donna

It sounds like you have a worthy guide for the journey. I am so confident you can do this. You have everything you need to stand at the crossroads and explore every possibility. And you will find JOY at the end (well, at the beginning and middle too!), except this time the word will have all its letters. Nothing left out. You can do it. You can do it. You can do it!! ~~Donna

Thanks for the update, Nancy. You have been on my mind. Isolation from medical services sure limits your options, doesn't it? It is kind of mind boggling to me that there is no nursing home at all in your area. I'm glad he's taking his meds again but I sure do agree with the surgical consult. Need to leave yourself with a way to get around the stubbornness. Day at a time for sure. ~~Donna

Sandy, my mom was in assisted living for a number of years. At that level of care there is a strict requirement that the residents can find their own way to safety in the event of a fire. I think that's the main reason for the walking requirement. But there was assistance. She took care of her own personal care but there was someone on duty 24 hours a day on her floor. They took care of all her meds and checked on her if there was reason to. Laundry was done and meals were taken in a dining room. She had a small kitchen for light meals but no stove or oven. They had transportation to grocery stores and other outings. Of course, there were activities of all sorts the residents could participate in if they wanted to. In my mom's case, if she began to require help with personal care or was unable to find her own way to safety, she would not qualify to live there any longer. Henry, best wishes on meeting your goal!

We live in fear of falls, don't we? Or I do anyway. I'm so glad the x-ray was okay. I do recognize the terror that goes with not knowing what the future may be from "here". I'm sure he'll be sore for a while with a direct hit to the hip. Perhaps this experience will burn safety into his brain. I hope so. Well, you've had it checked out now so I hope you both sleep better tonight and you can celebrate Valentine's Day any darn day you choose! ~~Donna

You are definitely not an idiot. You are overstretched and overwhelmed by a completely unmanageable situation. Nancy, I just want to whisk you away right now. The only thing I have to suggest is to pick up that phone at the first moment of seizure and call 911. Get him into the hospital first of all and then regroup and develop a plan. There's no use to cry, beg, cajole, or manipulate. It won't do any good, as you've discovered now and before. My heart breaks for both of you.

Wise words as usual, Jamie. I've spent a fair amount of time teaching about the wisdom of accepting what is in front of us with curiosity and openness. Also, about self care. A big part of my life before Lauren's stroke consisted of that. It is not lost on me that I now have the opportunity to see if I really meant it. I do know it's a lot easier to talk about than it is to do when life is really tough. I love the quote by Maya Angelou. Helpful words that give us an extra push to see our way through. ~~Donna

Very helpful information. Thanks so much for sharing. I don't know why they have to make it so hard but it is nice to know that consistent effort can yield good results. ~~Donna