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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

It is wonderful to read of your trip. Just makes me happy. You have been missed around here so it is also good to see you back. Kind of feels like you have taken on the world...and won! ~~Donna

Gracious. How you still do all the caregiving tasks with that blood pressure and low hemoglobin I'll never know! You are tough. If the transfusion is needed, I hope it gives you more energy as well as an increased BP. Lauren has been having episodes of his BP dropping that low after he gets his meds. I'm working on it with his doctor but it makes him very weak and he doesn't think as clearly (an area we have no room to decline in!) For Lauren, though, he can just lay down and sleep it off--no work or obligations he has to attend to. Take care. ~~Donna

Thinking of you, Nancy. It's hard to be needed in so many places at once. I'm glad you've worked out a way to be with your friend and get help for Dan while you're gone. I'm sure your presence will be a comfort for your friend. ~~Donna

It's good to hear from you, Mary Jo. I'm glad the memorial mass brought a sense of closure as well as a fitting celebration of Dan's life. As you say, i don't think any of us can really prepare for the loss of someone we love and have been with through so many years of life. Seems like all we can do is just what you're doing--taking it as it comes and letting the grief have its time. Keep in touch as it seems right. We are so interested in how you are doing. I hope you will find more and more occasions to laugh, as Dan most certainly wanted you to do when he was able to assist! Getting a sprinkler system is a good idea. You need to make things as easy as possible. Take good care of you. ~~Donna

Lauren spent about 4-1/2 weeks in the nursing home getting skilled care. He came home on July 8. Medicare wouldn't continue to pay for his stay because he wasn't making enough progress. It was touch and go there for a while about whether I could bring him home at all. He required two to three people to transfer and he was not doing well in PT either. He always does so much better with me that I was unsure that what I was seeing at the nursing home would carry over to home. One day I asked if I could try to transfer him in and out of the car with the PT there. That seemed like a deal-breaker for me. If he was to be home, I needed to be able to get him to doctors and tests. She reluctantly agreed although I could tell she thought I was out of my mind. She brought out an extra therapist with her when we tried it. He did perfect! No problem at all. They just stood there in shock. Then we came into his room and I transferred him to the stool. Again, just like normal. They weren't even taking him into the bathroom. Just let him make a mess and they'll clean it up in the bed. Then I transferred him to bed by myself. All just fine. This is not a statement about how bad or incompetent they were. It showed us all how much better he does with me than with anyone else. He trusts me and is used to the cues I give. We have a routine he is comfortable with. That clinched it for me. I knew I could safely bring him home--at least for a while. I am still taking it a day at a time. I don't honestly know how long I will be able to carry on but, for today, I can and I will. Since we got home he has already choked several times (big time scary for me). He took himself into the bedroom while I was napping on the couch and tried to get himself into bed, ending up on the floor. I can't budge him when he is down like that so I had to call 911 to get lift assistance. Thankfully, they are so kind about such things. We have PT coming in which helps keep him from getting weaker. I still feel very close to an edge but I figure every day I give him at home is one less day he has to endure away from his home. I'm going to give him every day I can. ~~Donna

I don't know how you kept up the pace for so long but I celebrate the end of it along with you! I'm sure it will feel so good to just be able to stay home. It sounds like Bob held up his side of the bargain quite well. Good for him. ~~Donna

Beautiful new home, Nancy! I hate that you have been placed in the position of needing to leave. However, some of these neighbors have created way more stress than you need. Best of luck in the transition! Your chicken cracks me up! ~~Donna

A milestone to celebrate for sure. We just hit the 40 yr mark in May. I'm so glad you were able to celebrate with family a couple of weeks ago. We never know when the off days are going to come so we grab the celebrations when we can! I hope he's feeling better today. ~~Donna

Thinking of you today and praying for the best outcome. ~~Donna

I'm not sure what I'm going to do. Lauren just continues to decline. He ended up in the hospital in early June. It was UTI and constipation. His strength and stability were getting really bad. My daughter from two hours away had to come and spend the weekend before he went into the hospital. It took two of us to transfer him. On June 6 he went back into the nursing home for skilled care, getting PT and OT. He has good days and bad days--mostly bad. He twists his back something awful when he stands and gets to be almost a dead weight while PT is trying to hold him up. I look at that and know I can't manage it. At this point they are saying they will discharge him from skilled services as of July 3. Next Wed. This is because he is not making enough progress to continue therapy. Now I have to decide whether to chance it at home or transfer him to nursing home level. I know he does better with me and he does better at home. However, I have to be able to manage him by myself and no one at the nursing home, including the PT, is willing to do that now. I also have to consider whether the private duty aides I have can or should be asked to work with him. Without them I know I will fold in a heartbeat. I talked to him today after a particularly bad session with PT. I told him that I was considering the possibility that I couldn't take him home and that he would have to stay there. It was just truth telling, not trying to be mean at all. I told him that right now he is just not gaining enough strength and I could hurt myself or him if he was transferring that way at home. I asked him what he thought of staying there, how he thought it would be for him. He said, "Awful." Makes me want to cry. I want to try bringing him home but I really don't know if it's the wise thing to do. This is, without a doubt, the hardest decision of my life. I am quite convinced that if I place him there (or anywhere) permanently, it will be the beginning of a lasting decline and there will be no return from that. Struggling right now. ~~Donna

Wow! Not helpful at all. Time to call on some OTHER friends, hand selected. Choose one with amazing organizational skills and two or three strong ones to come over and put some order to the mess. You can be the director in getting things back into the sheds they belong in. You have enough to deal with--did you really need to come home to things worse than when you left? I think not! ~~Donna

I wrote a message a few days ago but somehow it didn't post. I did want you to know I am thinking of you. These last few months have been so difficult for you and Dan. I'm so sad for your loss. But I'm also glad you had some good laughs together even in his last days. Special memories for you. You have met the challenges of caregiving with wisdom and strength and I know you will continue to do so with the transition in front of you now. My prayers are with you. ~~Donna

Enjoy your trip and your reconnection with relatives. You will probably have good insights into what might be helpful for them in their caregiving roles. Also, just being able to talk with others about something not related to illness or caregiving is a wonderful gift, as you know very well. Hope you have a great time! ~~Donna

Julie, I was thinking about you when I heard of tornados in your area. I'm glad you are able to get Larry to the basement, even if it's difficult. At least you can get there. Enjoy the next few days of calmer weather--hope it lasts much longer than that! ~~Donna

Things have been a bit rugged around here lately and I feel so exhausted. I seem to need a nap every day which is very unusual for me. I can't decide if it's the new med for depression or if depression itself is to blame. I actually do not feel depressed. I feel exhausted and weary. I was a lot more irritable with Lauren, which is why I went on the antidepressant to begin with. That part has really been helped by the medication. I talked to my doctor about the tiredness and she said it isn't a common reaction to this particular med but it could be that. She recommended I break the pill in two and see if a half dose would still help but ease the sleepiness. I haven't tried that yet but will need to, I think. Last month I had a week-long visit from a friend who lives in CA. I don't see her face-to-face very often. In spite of the fact that she was quite busy with a conference she was attending, we managed to get some quality visiting in and it did make things brighter that week. It is so good to have conversations about things other than stroke and the difficulties of managing them. We had those conversations as well but much of our time was about other things we have in common. A brief taste of the life I used to have. We've had some house problems lately that caused a slight emergency. Water heater started streaming water through a rusted out spot so needed immediate replacement. Discovered water in the basement completely unrelated to that but very new. We had boxes down there that got the bottoms soaked so I needed to go through all that and discard, purge, and reorganize. Mold was already taking hold. I had to put Lauren back in respite care for a bit so I could concentrate on getting things cleaned out. With some valuable help from family I got a lot done in a few days time and a number of things out of the house for good. What a blessing! Unfortunately, that respite time back in the nursing home has taken a serious toll on Lauren's strength. They pretty much let him stay in bed as much as he wanted so he spent many more hours lying down than he does here at home. They help him with everything instead of making him do for himself as much as he can. He came back to me completely debilitated. He has previously bounced back from that fairly soon after our routines get back in place but not so this time. He is weak and "foggy" and has lost a lot of ground. Over a week home and he's not better at all. I really don't know what is going on. He just seems out of it. Complains of back pain a lot but says nothing happened there at the nursing home to cause it. His rehab doctor has ordered more PT so we'll see if that helps get him back on his feet. If not, I think we are seeing another decline setting in. I'm not sure we'll get it back. I'm concerned but feel so helpless and hopeless about it all right now. Tired. I'm tired. ~~Donna

That says it all, doesn't it Sue? I know you miss him and the life you had together. I admire the caregiver you were to Ray and your parents and I continue to support you as you place one foot in front of the other in this new journey. Share as you can and let it go when you can't. You continue to teach me. ~~Donna

Celebrate well this weekend! You both deserve it. I remember the stress of Joint Commission coming to certify the hospital I worked in. What you've gone through sounds the same. They find every nit picking thing they can to send everyone scurrying. It might just be a week but it takes a year off one's life! Glad it's over. Overnight continence is wonderful! I'm glad you continue to see signs of improvement in Bruce. I know it is slow and never as much as we hope for but every bit is exciting. (At least I think it would be...) Hope your weekend is restful and fun. ~~Donna

Mary Jo, I am so sorry to hear of this. I can certainly understand how tired and frustrated you must be. You knew going in there could be recovery problems but I imagine you weren't thinking of this kind of issue. You assess the situation, get input from the "experts," make the best decision based on what is needed now. You know you are not super human. You just do the best you can and I agree he's in no shape to come home at this point. Take care of you best you can and I will keep you in my thoughts and prayers. ~~Donna