djs202

Glad for the update. I have been thinking of you guys. It sounds like little Quincy is providing just the entertainment and companionship you need. That is great! I know you are still taking Dan's recovery a day at a time but so far so good. Grateful for that. Just don't take on more than you can in his homecoming. I know I've been guilty of thinking I can handle things then finding out I can't.

Good for you for taking advantage of some more relaxed days. Just a lazy morning can be so refreshing! All the best as recovery continues. ~~Donna

So glad you had a good time. Good insight, too, on the surprise aspect. You are right. I guess sometimes surprises are not welcome. He needed to know. Successful day for sure! ~~Donna

What wonderful news! What a great celebration you guys planned. Makes me smile to read of your wedding. Best wishes. ~~Donna

Hmmm. Perhaps I'll just stop complaining about our rugged weather in the 40's, gloomy, and rainy. That would seem divine to you northerners with 16 inches of snow. Craziness.

Here's hoping the worst of your problems continues to be April cleaning house like a mad woman! When someone wants to clean my house, they can do it any way they want!! ~~Donna

One of the things I have loved reading about in your recent blogs is the connection and time spent with your grandkids. I have missed the frequent care I gave to the two closest to us (in distance). I used to have them over quite regularly and now it is rare that I see them without their parents. I'm sure your grands are happy to see more of you.

I imagine you would be a wonderful pastoral visitor for those you mentioned. Besides your natural capacity for that sort of thing, you have learned a lot about long-term illness and how it affects people. Everybody benefits from a care-filled visit.

Enjoy the good weather while it lasts. Gardens and warm, sunny days are so refreshing. ~~Donna

Tornado warnings really scare me now. We have a great basement space that's completely protected but no way Lauren can get there. We have just tried to find the most protected space on the main floor and pad it, hope for the best. Keep the meds in a nearby closet.

"Doctors appts from one end to the other"--LOL! That's our life! We also have increasing issues with choking. I don't like it at all. Another big fear of mine. Thankfully, the ambulance is nearby so response time is fast. I haven't had to call them for Lauren's choking yet but have been heading to the phone several times when he finally cleared his airway.

Our weather this weekend is wonderful for sitting out on the deck. I'm all over that. Gives my spirits a boost. Still a bit chilly for Lauren, though. He is very sensitive to cold right now and doesn't like it outside unless it's 80 degrees with no breeze. Hope you get some outside time together this weekend. ~~Donna

I really hope you got your sleep and a good bath. Getting someone to come in so you can do that is just what is needed with all you've been doing. I can certainly understand why you are cutting some corners on the meal front. Not to worry. Be guilt free. You've not been feeling well and something usually has to give when we are not in top form. Give yourself that extra time until you begin to feel better. I've only had two times when I was really sick since Lauren's stroke. Couldn't take care of Lauren in any way. I had to call in emergency private duty. Thankfully both times were rather quickly resolved. It would be nice if we could guarantee we wouldn't ever have times of illness but it isn't going to happen!

I hope the rest of the weekend goes well! ~~Donna

Excellent! What creativity in getting something you need while also attending to Dan. Just excellent! I hope a new doctor can see a new way to treat Dan that will turn things around. You are certainly due for a turn-around. ~~Donna

I'll be happy to remember you in prayer on the 18th and beyond. Lauren had cataract surgery and it was good for him. Best wishes! ~~Donna

It does sound like you have a lot going on! Your little guy seems to be in great hands. I find it interesting that he does better in school at night. Homeschooling is just the thing for being responsive to the particular needs of a student. It would be so nice if schools could figure out how to individualize their education just a bit more. Best wishes! ~~Donna

Yes, the paramedics know us well. For someone who was once an ER nurse who never, once, called an ambulance in all her child-raising years, I sure have made up for it in the last 2 or so. I'm sure grateful for them, though. I have a lot of fears about the things that can happen in our home with Lauren's multiple health issues but choking is high on the list. When one of our grandsons was in my care (he was about a year and a half), he choked on a small bite of apple and it was really bad. I called 911 (again, something I never did). By the time they got here, he had managed to cough it out. Scared me beyond all kind of scared. Choking still sends me into a frenzy. I've not quite figured out how to effectively do the heimlich with Lauren in a wheelchair but I'd have to give my best shot if it ever comes to that.

Good luck on the gathering with the kids. I hope it goes well and that they do see how things are there. I think our kids have trouble seeing us vulnerable and in need of help. I'm sure it will be good for both of you to be with them. ~~Donna

What a cute little puppy! I'm sure he'll bring lots of joy to your home. I will be keeping you and Dan in my prayers on the 18th and beyond. It sounds like a big deal but the best of the options open to you. These decisions are never easy to make. We continue to do the best we can with the information we have. I'll be thinking of you. ~~Donna

You just keep doing what is right for you and Dan, Nancy. We all have different points where it becomes unmanageable. You have an amazing capacity to handle a very difficult situation. I keep Lauren at home for the very same reason you gave. I know he is better off at home. No doubt about it. Lauren is much easier to get along with than your Dan, though, so even though I feel strained and stretched it is nothing like what you are going through.

When I was going through the process of consulting with the elder law attorney, someone told me to be prepared for him to tell me that I would need to get a divorce to protect our assets. The attorney didn't even mention that but just the suggestion that it might come up sent me into a major tailspin. I thought about it long and hard and came to the conclusion that making that decision would ruin me too. It was a complete no-go for me, no matter the financial consequences. I think it's important to know what choices are just not going to work for us, for now. We can never project into the future enough to know whether that decision will feel differently at another time. But for now, no.

I certainly agree that Dan isn't having a good time. It's hard to know what his motivations are, if there are any conscious motivations at all. It seems clear that it is not to have a good time. At one point I think you mentioned fear as something that was underneath a lot of his behavior. It seems reasonable to me that fear is a factor.

I'm going to keep saying this though: take some time for yourself. I hope you're doing that. I'm glad you got to the funeral of your friends' daughter. Not a good time, I'm sure, but important and something you wanted to do. I'm not going to accept that you can't do things for yourself (I say this gently and with love ). You must. Start with 15 minutes if that's all you get, but make those 15 minutes count for something that is life-giving to you. That may be a nap right now but it needs to be something. You need to keep Dan at home. In order to do that, you must give yourself some care. It's not an indulgence; it's every bit as important to Dan's well-being as his medicine and food and drink is. Lecture over. (Yes, I do know these words are as much for me as for you!)

~~Donna

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