djs202

Nancy, you have been through so much over these last few weeks that I'm surprised you're not flat on your back. And yes, it does seem to go on and on. We have been to the ER so many times I've lost count. I am glad Dan doesn't have a clot. That's always so scary when the INR is low. I wonder if they will admit him to check out what's wrong. Take care of yourself the best you can and know we are all here pulling for you. All the best ~~Donna

Thinking of both of you and I will hold all those in the path of the storm in prayer this weekend. I think I'd be most worried about power loss as well. Other things you can prepare for--except for medical emergencies. Oh the fun of being the sole responsible party, eh? Stay safe everyone. ~~Donna

I took Lauren back to the nursing home for a week so I could have a week of respite. He knows this nursing home from two stays for skilled nursing and they know him, of course. I stayed home for most of the week and went to my daughter's house for the weekend. She lives 2 1/2 hrs away and I hadn't even seen the house they moved into last fall. In order for me to get respite, it was important that I not spend the days visiting Lauren in the nursing home so I arranged visits from family and friends for almost every day he was there. That gave me the assurance that he would be monitored and any real problems managed. I remained the contact person for the nursing home, wanting to know of any significant issues that popped up. I have had time away before because his sister has been willing to give me that time. As wonderful as those times were, I also yearned to just be at home in a more relaxed way. I love being home as long as I also have the freedom to leave at will! The week was wonderful for me. I was able to sleep in till i woke up, move into the day in a more relaxed fashion, listen to music I liked and LEAVE THE TV OFF! I got tickets to a musical concert at a wonderful new musical hall in our area. I went with my daughter who lives near us. I got a wonderful massage and got my hair cut. I tried to make this week consist of a mix of things I wanted to do, things I missed doing, and simply no thing at all. I was able to spend some time with all my grandkids. I hoped to spend some of my time purging, organizing and cleaning out. Not too much of that happened. Lauren, of course, told everyone he saw that he was ready to come home. It was good for my heart to hear my brother say that every time they went to the nursing home, they were struck by the good feeling the place gave them. They have had some experience in other places with family members and this feeling is not always present. They said people were all friendly and there seemed to be a relaxed conversation going on among the residents and staff during meals. There were a couple of glitches I found when I went to pick him up. My learning is that in the future I will take him a day earlier than I want to be "off" and stay around to make sure everything is as it should be and his caregivers are properly trained in how to work with him. The biggest problem is that they do too much for him and he is much more difficult to care for than is necessary because they take on the heavy work he can do for himself. I will definitely be doing this again. It is the compromise Lauren must make in order to be able to stay home the rest of the time. We are that close to the edge between home and permanent placement. Lauren is getting ready to become eligible for Medicare--in May. I realized that the normal yearly benefits we have with the insurance company will now end in May so I talked to his rehab doctor about stepping up the outpatient physical therapy and using as much of those benefits as we can. So, we are going three days a week now for a few weeks just for PT to see if we can get him stronger and safer. As long as he's going to be home, he sure needs to keep trying to move. If it would ever get to the point that I could walk him safely without a second person, that would help a lot. For now, getting out of the house is grand for any reason and the more intense PT is good. I just wish they didn't always make me feel like I'm a terrible caregiver because I'm not doing more every day. You sure have to get a thick skin as a caregiver (as a survivor too, I'm sure). They get so focused on their own specialty and think that is all we need to concentrate on every day. Yeah, right. Keeping the mantra in my head: doing the best I can and forgiving myself for what I can't... ~~Donna

I am also an INFJ. From what I understand, there is a lower percentage of the general population who test as INFJ's. However, I seem to have a fair number of friends who have that result. We must instinctively band together! Interesting reading. Thanks! ~~Donna

Good for you! You did just what you needed to do for renewal. I took a trip like that last year with friends and then had some time alone. It made everything better for quite a while. Lauren also missed me quite a lot so he wasn't as likely to take me for granted once I came home. I hope your "glow" lasts for months, not just a few days. I know these trips are expensive with all the additional cost associated with providing care for our spouse but they are worth every penny in my book. Doesn't always have to be waterfront (although that's grand!)--just a time away to regroup and refresh. ~~Donna

When you finally find a therapist who HELPS it is wonderful! It sounds like she is looking for what works instead of just repeating a treatment plan she does with everyone. I hope you get more than those few sessions--we won't get me started on the limited therapy available to so many. Your job must be a good fit for you. What a great way to start a day, thinking about working at something that has meaning and that you are good at. With your determination you will keep on doing good things for yourself and others. ~~Donna

I'm not sure I could make it to 50 but you have listed some of my favorites as well. Have you seen King's Speech? If not, you might enjoy it.

Yep. Sorry, Nancy, for all the losses. Builds up sometimes. Even though the move made good sense and has benefits for both of you, that doesn't make up for the love of the farm and the way you want to be available to your daughter. We reminisce as long as we need to, long for what cannot be, and then face into the new day with all the hope and joy we can muster. Peace... ~~Donna

Sting, I'm with you on the dream of a doctor visit that doesn't require repeated follow-ups. We have 8 specialists we see (for Lauren only) so every month has several doctor visits in it. Crazy-making! That's wonderful that they can do the tests at home. I'm curious about the sleep apnea one, though. Is there someone there all night with him that monitors the test? For Lauren, they made adjustments through the night. Oh well, I think it will be much better in your situation with Ray to have it done at home. It does sound like you have found a perfect way to spend a day on the second anniversary of Ray's stroke. A wonderful dinner with friends will be a joy! ~~Donna

I can relate. Coffee is one of the simple pleasures in my day. When coffeemaker goes out, Donna must find someone to watch Lauren TODAY so she can go get a replacement! So glad you have been saved by the UPS delivery. ~~Donna

In your situation I would have already blown a fuse big time. I don't have to deal with those type of behaviors so I can't give much in the way of suggestions. I just think that basic respect is required and when he doesn't give it to you, you have to call him on it. I am curious about something you said. If you cut back on some of the "catering" how do you think it will set things back to the beginning? Just asking for clarification because whatever fears you harbor there might provide insight into the situation you are in with him now. Or, perhaps, it is just something for you to reflect on privately and not necessarily answer here. People with the mental capacity of a toddler cannot be running households (although far too many actual toddlers do!). So I am right with you that some new guidelines need to be set. He can't be treated like a child because he is not a child even though the mental capacity issue is there. But toddlers having tantrums generally don't get attention in their tantrum and only get what they want when it is appropriate and when they learn to ask nicely (respectfully). They have to accept limitations. We all have to accept limitations. So you do what is necessary to keep him safe and try to withdraw attention when he is demanding. I like Sue's response. "One wife, one job, choose one..." So simple, so complete. Deep breaths and best wishes...~~Donna

Love your stories! I'm a Nana too and those grands keep the joy flowing. We have twin grandkids (girl and boy) who are 2 1/2. The boy (Aiden) has taken to Lauren's quad cane and uses it as a microphone for his "performances." Totally love that. When he started stomping his right foot like a country singer I cracked up. I'll see if they decide to pick up "cane golf" at some point. ~~Donna

Lauren was diagnosed with dementia when he had an eval by a neuropsychiatrist. He wasn't able to do most of the testing so it was only minimally helpful but that word is in the conclusions. It didn't really tell me anything I didn't already know. I have downloaded the book to my Kindle. It might provide some helpful information. Lauren also has severe sleep apnea. His is called complex central sleep apnea and is life-threatening because of the long pauses he has in his breathing. I think he had sleep apnea for quite some time prior to his stroke but it became much worse after. The sleep specialist we see for this condition came to a stroke support group we attend and he opened my eyes to how serious this condition can be. Sleep apnea is thought to be a cause of both heart attacks and strokes. Lauren had a heart attack 2 years before his stroke and the stroke was caused by a clot that formed in his heart. I just wonder if this condition contributed to the original heart attack. Lauren has a BiPap which provides a higher level of pressure that kicks in when he stops breathing and forces a breath. The doctor said it's almost like a ventilator but outside the body. We started with a mask that covered his nose and mouth. He kept pulling that thing off in the night causing me no sleep most of the night. We moved to a nasal piece that just goes inside his nostrils and is a soft pillow. He has tolerated that much better. The machines have become much quieter than they used to be. The nasal piece still gets dislodged sometimes and causes noise until it is repositioned. To me, it is a must that he wear it. He definitely sleeps better with it and the sleep is more restful. But, most importantly, he breathes. I have heard of many people who sleep so much better with it that they are happy to adjust to the initial discomfort because they feel so much better in the daytime. A good number never adjust. Still, I think if they are recommending it, it would be a good idea to go through the testing. That way you'd know what you are dealing with. We had the sleep apnea test done in a hospital setting but it was in a unit separate from the main hospital. The bed was very much like a hotel bed and the room did have a TV. They set the test up for when you sleep, though, so once the actual testing was started the TV was off for bedtime. I could have stayed with him but chose not to do that. He was fine without me and I needed my sleep, which I was certain would not happen there. I will be interested in hearing about the ongoing process too. Sounds quite involved. Hope you are on the mend. That flu bug seems to be a bad one this year. ~~Donna

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

Lauren has been in the skilled nursing home for 2 wks. He was in Acute Rehab in the hospital for 2 wks prior to that. He's gone from not even being able to bend at the waist or stand to walking with a hemi-walker about 12 ft. He's bending pretty freely now and transferring much better. There's still much room for improvement but progress is being made. He's approved by insurance until the 26th so there will be another evaluation then to see if he needs more time. I have received permission to bring him home on Thanksgiving for the family gathering. We are both very happy about that. I have been pleasantly surprised by the good quality of his care this time. Same place, many of the same people, but the attention and care seems to be improved. He goes to a dining room for meals and they have given him a table-mate who is a catholic priest. This priest has been very active prior to a fall, I think. It's been a great match because the priest carries on a conversation with Lauren in a way none of the other residents do. That makes me very happy. The past couple of days Lauren has been showing signs of increasing depression. It's more discouragement that he is where he is. He wants to be home, of course. I'm feeling more like that is going to be possible since he's making progress. It breaks my heart to leave him there but I know he needs more therapy to become ready to be at home. As for me, I'm really weary. Traveling back and forth every day and spending from 4-6 hrs a day for now 5 wks total is just so exhausting and I don't get much accomplished that needs to be done at home. I'm also drained emotionally. There is the strain of not knowing how long he will be able to be at home from here on out. There is a big financial worry if I do need to place him in a nursing home. We have enough finances that we wouldn't qualify yet for Medicaid but those could be drained pretty quickly and I'd be left with nothing. I'm meeting with an elder law attorney next week to discuss options that will allow me to preserve what is allowed by law for my own needs. It's just all so overwhelming when so many other worries are right in front of me. So many of you have already dealt with all that and I know I'm not alone in the struggle. Jamie, if you read this I want to thank you for the insight you gave me from my last blog posting. It has helped me a lot in trying to understand Lauren's state of mind related to motivation. I have always believed his lack of motivation was stroke-induced but you articulated the process so clearly. I've been thinking a lot about that aspect of stroke recovery. It seems like it's still an unknown in the recovery world. They've figured out so much about how to get people walking and speaking and moving their affected side and dealing with many other physical parts of stroke recovery. But many of them still see lack of motivation as a character flaw instead of a deficit from the stroke. Someday I hope there will be some research into how to activate emotional/motivational components of the brain so survivors who are affected in this way can be given tools to work on that as well. Lauren's rehab dr said he thinks it's a part of Lauren's left neglect. I expect that is part of it because it does fit with right brian injury but, from this site, I've seen many more affected by it than just those with severe left neglect. For now, I carry on. Tired. Drained. Determined. Hopeful. 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)