djs202

Our New Year's holiday was low key as well. Like you, that is okay with me. However, I learned of a death of a friend's son on the Saturday before New Year's and that kept me pretty sad through the weekend. Good that I had no expectations of merriment.

I have forgotten what surgery Dan is preparing for but I can certainly relate to the foreboding sense you have. I get that whenever any major diagnostic test is given and certainly would worry about a surgery too. Not that our worry means there really is a greater risk; it's just that our loved ones seem so fragile as it is and any unusual thing seems scary.

Enjoy your time in Florida and let the sun shine on you every day. Sue's right. We need to focus on today and make the most joy possible in it.

I have to tell you a story. About a year ago, I was able to spend a few days at a friend's condo on a lake in Michigan. Some mutual friends joined us for a few days and then she let me stay on for another couple of days alone. It was such an amazing gift that provided me with a lot of renewal. When I talked to my friends, I heard myself anticipating the worst and saw that I was living in that reality more than the present time. During my alone time, I started to reflect on what I could do for Lauren that would make a difference. The thing that came to me very strongly was that I could make him laugh every day. I came home from that time determined that he would laugh every day and, if I was putting him to bed at night and hadn't had that laugh, I would do something stupid to make him chuckle. There is so much we can't control in the recovery of our loved one, but we sure can help them laugh. That kind of focus really changed my attitude for a long time. I've lost track of doing that in recent months but I'm going to pick it back up as a goal for every day. Break it down to the simple things and the great big things don't seem quite so big! ~~Donna

I live in the land of the Chiefs and so if you're looking for a new team to support, there are a lot of fan vacancies to fill. The players would love you and you could have your pick of the seats in the newly renovated stadium!

I am a die-hard TV sports hater. Never watched anything or cared. Lauren watched his games on a TV in another room and I did my own thing. Post stroke, the TV now resides in the living room and I can't go off on my own so I'm watching sports ALL the time! I don't like it any more than I used to but I am becoming more knowledgable. My family does a double-take whenever I make a comment on a game or a team member. That part is kind of fun to watch.

Enjoy your games--wherever you watch or "play" them and Happy New Year to you as well!

Donna

My daughter has been choosing "one little word" for several years now. It has been a great exercise for her. She takes a lot of pictures of the family and it really had gotten out of hand one year. She chose "present" that year and it reminded her to be engaged in the activities with the family as well as getting the photos. Each year that word has shaped how she functioned in her life in some pretty important ways. I think it's a great idea and I love that you chose "fun"! So fitting.

I wish you all the best as you discover how 2013 will help "fun" advance in your life! ~~Donna

Seriously sorry those blankety blank seizures continue to come. I'm glad they are decreasing in intensity but it sure would be nice if you had them controlled.

At two years Lauren cannot move anything on his left (affected) side. So, to me, the movement you are seeing is celebration worthy! Mike's got enough going on that it can be built on with continued effort. The survivors guide us caregivers best in terms of tiredness. It is clear that any therapy is exhausting very quickly. Overdoing has a negative effect so rest is as important as the therapy itself.

Lauren has developed some swallowing problems so the speech therapist as him doing tongue exercises. It is huge effort for him and really tires him out. We do it after eating so he will have best strength for eating. It's fascinating to see each activity required to function in the world (that we do mindlessly and without effort) divided into the many steps required to do the activity. For instance, I never realized that, in order to stand up, we all have to lean forward pretty far to do that. I just stood up. But now, with Lauren, we move the bottom forward in the chair, bring the left foot underneath the body, get the right foot under too, lean forward, lean forward more, push up from the chair, straighten the knees, etc. Every stand requires that level of thinking and cueing for him. Can you imagine how exhausting all that is for just one simple function?

Mike is making progress and that is a good thing. ~~Donna

Wow. That's a lot of time shopping! Great savings, though! It's great that Bruce has discovered a way to be such a good contributor to your household needs.

Losing our loved ones at any time is so hard. It always seems to add another measure of pain when it happens during the holidays. The joy of the holiday seems so out of sorts with the feeling of loss. In time, I suppose we learn to hold the two together and remember our loved ones while still experiencing the season with anticipation and joy. A very dear friend of mine died in early December as a result of multiple myeloma. She was only 58. All this season I have remembered that she so wanted to live, to experience life with fullness. As a way of honoring her and her desire for life, this year I have claimed the Christmas season with joy in spite of the pain of my own situation and the loss I feel without my friend because I don't want to waste one day of life. It is working for me this year; another year might be a different story!

You now have added reason to rejoice in the holiday season! I think all of us on this site celebrated your wedding with you. You have gone through so much to get to this point. I wish you a very merry Christmas!

Donna

I'm so glad you are able to do these things. It must make you feel like you are getting some sense of "normal" back. Such fun.

Glad the party was a success! My best to you and Bruce this weekend. Lots of joy for you both.

What wonderful news! I'm so glad for the recovery that has allowed this moment and for the love and trust that has grown over these many years. It sounds like a special day of celebration.

Donna

Oh.My.Goodness! I'll pray with you that Dan misses the worst of the bug. He's already had enough with the seizure. So sorry the seizures keep coming. I have been really sick twice since Lauren had his stroke. Thankfully, both times I had family around when it started and I called in emergency private duty to help through the night. I can never figure out which is worse, Lauren having the bug or me having it and needing to take care of him. Now you've gone and shown me an option I had not considered!

Just lay low as much as possible until you get your strength back. That stuff zaps your energy big time.

Donna

What wonderful news! I'm betting you got that job because you proved yourself quite able. That determination you showed is quite impressive. I hope you love every minute of your new job. You are an inspiration!

Donna (caregiver to Lauren who had a stroke 12/2010)

Sandy, compression fractures are different from other types of fractures. The bone is not broken. Two of his vertebra in his spine are compressed together and it causes the material between the two bones to bulge out. It causes pain for anyone but the key to anyone's recovery is to continue movement while it heals. Sometimes the back needs to be supported and they would definitely not want heavy lifting during recovery for anyone. That's not an issue for Lauren. He just needs to continue to bend forward and stand.

You are certainly right that these kind of things in stroke survivors adds an extra level of difficulty. Most people without a stroke or other disability would not likely require rehab to recover but they might need outpatient PT. The goal of rehab for Lauren is to keep that back limber enough to enable him to stand and transfer. If he stops using it for 3 months he will likely not be able to get out of bed on his own power again. I don't think they are expecting more of Lauren than they should. I think everyone is fighting hard to keep him active enough to maintain an adequate level of movement so he won't lose any more ground than is necessary. The most negative impact of the stroke in all this for Lauren is his inability to power through discomfort. He lives very much in the moment and, if it hurts now, he can't look down the road and see that the gain is worth the pain. He wants to go home but can't make himself do the things that will get him there. Discouraging--but it is what it is.

"Hope magnifies what expectations minimize." If that isn't a nugget that helps, I don't know what one is. Hope has to be the thing that keeps survivors and caregivers going. I know that, for me, hope is even underneath my times of hopelessness.

I have been reading your postings for a while now. I've probably missed plenty but I have to say that I haven't read anything of yours that sounds like a lunatic. It may look that way to you when you re-read past posts but it doesn't come across that way. I know I often think I've said or done something horrifying and, when I check it out with the others involved, my interpretation of their reaction is all wrong.

None of us has this particular journey figured out. I know I sure don't. I think that's what makes this site so helpful. We are all stumbling along, doing our best to respond to a catastrophic event (or many) in a way that brings healing and renewal.

Thanks for your wisdom. Keep on blogging and posting. You do help and make a difference.

Donna

That's a pretty incredible combination of things to deal with in such a short time. Completely "not fair!". It sounds like you have a good handle on how it needs to be monitored. My husband had his stroke almost two years ago and he has had a wide variety of ills since then along with the stroke that has left him seriously incapacitated. Sometimes it feels like he's been in the hospital or other facilities more than he's been home. Stinks. I hope the MRSA is making a fast retreat and you are able to stay home.

Donna

So sorry to hear of Ray's seizures and falls. He sure has had a time lately and you with him. I hope his birthday is celebrated in comfort among his loved ones. Those seizures are wretched things! You remain in my thoughts and prayers as you try to regain a sense of equilibrium. Donna

I'm glad you've gotten moved and that you find it beautiful. You've given this a lot of thought and it sounds like you believe it is the right thing to do for both you and Dan. Just stick to your guns on this one and Dan will eventually adjust. It must feel pretty overwhelming to have both a new place to adapt to and a farm to ready for sale. I hope you have some helpers for that task. Take a few minutes every day to just savor the good that this move has brought you. Enjoy the beauty of your new home!

Donna

I'm sending my support to you as you struggle through that deep pit of loneliness. I expect the weather isn't helping a bit. I am a loner by nature and have often felt I would be fine if I was ever alone. However, now that the possibility is closer to me, I have had glimpses of the kind of loneliness you speak of and recognize the sadness that comes with it. It sounds like you've done what you can to reach out. I hope others will respond soon and give you a good night out for dinner and a visit.

You don't have to carry the added burden of being upbeat all the time. No one feels that way all the time even if your general attitude is one of looking on the bright side. It sounds like you are going through a little bit of grieving for what is lost. We who are caregivers do that in bits and pieces don't we? You have had an abundance of losses with Ray going into the nursing home and it is natural that you would grieve.

Continue to take good care of yourself. Please do get that massage or anything else that would give you a lift. You certainly deserve it.

Donna

I don't think I would have been patient with Leo as long as you have but I know your motivation for keeping him on was because you believed it was a good bond with Bruce. You gave him every opportunity to step up and do his job. Seriously, I can't believe he had the nerve to leave Bruce alone and go run any kind of errand. I can certainly understand your anger. I'm sorry to hear about your own health issues and the need to be more attentive to that. We want to think we are invincible and will always be able to care for our loved ones. Best wishes on finding the perfect set of helpers to meet both your needs.

I can affirm that you are doing the right thing. Your mom will not benefit from you falling apart. The description you gave of the life you had before hiring additional help is just not a manageable life. Your health is suffering as a result. Your mom probably isn't able to understand what you are going through. I know my husband has become pretty self-centered since his stroke. He was always very thoughtful prior to his stroke so I believe the change is stroke related. You know your mom best. It might be that a change in routine is unsettling for her or it might be manipulation. In either case, your response is to continue to do what you know is best for both of you. You care for her best by also caring for yourself. It's required. I am speaking as a caregiver who also has to provide 24/7 care for my husband who needs assistance with just about every activity of daily living. I hire caregivers too and, thankfully, have family and friends who have stepped up to help.

My approach in your situation would be to simply continue to greet her as you normally would. If she doesn't speak, continue to speak to her in a conversational way as you are able. Stick to your guns about the hired caregivers. Be sure they are doing their jobs well and then let them do them. It probably won't help to try to cajole her into accepting this change. Simply give her the information about what to expect each day and then let it go. Once she knows its not negotiable, she may settle down.

Now, make sure you start having vacations, birthday celebrations, dinners out with just your husband. Spend time with your family. It will make a world of difference in how you cope and even in how you care for your mom. I know it's not easy but it sounds like it's pretty important for you right now.

Best wishes,

Donna

Lauren came home yesterday afternoon. He was started on Keppra. It makes me nervous to use anti-seizure meds and nervous not to. He's on Coumadin so another seizure does not sound like a good idea if it can be avoided.

Ruth, I also thought Lauren was dying. We had a private duty aide here who was helping him with his shower when the seizure occurred so, by the time I got to them, I only saw the end when he was unconscious and breathing very noisy. In the flurry of getting to a phone to call 911 she didn't tell me about the seizure until I heard her talking to the paramedics. I honestly thought he was taking his last breaths. He didn't begin to respond in any way for over 30 minutes. Even the ER was uncertain whether something additional was going on. CT showed no change.

Lauren has been in the hospital 5-6 times since his stroke Dec 2010: viral meningitis, 2-3 UTI's requiring IV antibiotics, sepsis (ICU with that one), seizure. They have all taken a toll on me but this one has really got me reeling. I think it is because I seriously thought it was the end. Also, there is no way to say this medical situation is over. You discover the meds aren't working by going through another seizure. So yes, eggshells. Whereas I once felt fairly comfortable taking Lauren in the car with me if I had a quick errand to run and leaving him in the car while I ran into a store to pick something up, now I won't do that. I'm even scared to leave him sit on the toilet stool alone but I have made myself step away for a few minutes. I don't yet feel comfortable taking a shower while he is sitting up in his wheelchair.

Sue, thank you for lifting up the way these struggles bring gifts. Not ones we would choose to receive in this particular way but I do know each of us are strengthened by our caring and we call on new and creative parts of ourselves to make it through--not just to survive but to thrive. That's what we want for ourselves and also what we want for our loved ones. As much as is possible within the limitations they have, we want them to thrive and enjoy live.

Thanks to each of you for understanding and for your good thoughts and prayers.

Donna

Thanks Debbie, Susan, and mc for your responses. It's been quite a day. Lauren had a grand mal seizure in the shower this morning. We had a private duty aide last night and she was the one with him in the shower. By the time I got there, all I saw was him laid out on the shower chair unresponsive and with seriously labored breathing. I thought he was going. He's in the hospital overnight and then we'll start dealing with stroke-induced seizure disorder. Every time I think I can't handle any more I get more to handle.

The reason Lauren has a catheter is not really because of the incontinence but the retention. Every time we try to remove the catheter he goes back into retention and can't pee at all. It's pretty awful. His tone kicks up and his left leg goes rigid. One time I couldn't get him out of the car and had to go to the ER where it took 4 people to pull him out backwards because his leg wouldn't bend. Now it doesn't take much urine in his bladder to make that happen.

I'll talk to the urologist about ditropan. He's on Toviaz, which is supposed to relax the spasms he has. Without the med his bladder is in an almost constant spasm.

Thanks again. I'll look back over your responses when I stop reeling from the day.

Donna

My husband, Lauren, has central sleep apnea, diagnosed after the stroke. He not only has spells of apnea but also simply stops breathing and goes for up to 30 seconds without taking a breath. He has a BiPap which adjusts to these episodes with an increase in the forced air that makes him take a breath. He uses the mask that covers his nose and mouth. I thought he would never tolerate it but he has done pretty well. He will still have nights when he pulls it off but mostly he leaves it on and sleeps much better as a result. Our machine is not noisy at all unless there is an air leak in the mask. I have to get up and adjust the mask and the noise goes away.

Lauren has a catheter so doesn't get up at night very often. I will say that he doesn't have any trouble at all taking it off, but I have to turn it off or put it back on for him. But he is pretty dependent in every area of activities of daily living. Not much he does on his own.

I rest much more comfortably when he uses the BiPap. Those long pauses with no breathing scare me a lot and keep me awake more than any other thing. I hope Larry is able to manage his on his own. There is an attachment on Lauren's that can disconnect from the machine without taking the entire mask off but I don't know if that is on all of them, or whether it would feel weird to leave the mask on while going to the bathroom.

I hope it goes well for you both.

Donna