djs202

Stroke Caregiver - female
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  1. djs202
    Such a long/short journey. After a year and a half in the nursing home, Lauren developed a bowel obstruction and was transferred to the hospital on Monday, June 22. Though we originally planned emergency surgery to correct the obstruction, he began to fail pretty rapidly and we decided to cancel the already highly risky surgery. I became convinced there would be a significant further loss of function even if he survived the surgery and his function was already pretty minimal. He was moved into a hospice house on Wednesday, June 24. We were told it would be 24-48 hrs but it ended up being 10 days. It was exhausting and holy and gentle and every emotion in between. Lauren transitioned in the early morning hours of July 3. I'm sure the sense of loss will continue to ebb and flow but right now I'm just trying to go through the process of planning for the memorial service and other issues that are immediate. Our experience with hospice house was so supportive and caring. We couldn't have asked for a better environment to go through this tough time. The support of this board was so helpful during the time I had Lauren at home. I'm pretty depleted right now so I'll just post this. ~~Donna
  2. djs202
    I do believe today marks the day, one year ago, when Lauren fell in our bathroom once again and began the painful journey through yet one more hospitalization, acute rehab, skilled rehab, and ultimate nursing home placement. It was a second compression fracture in his back that made him unable to come home. He spent November in a skilled unit trying to help him be more mobile. It became clear to me that he was not making enough progress to bring him home safely. December and January were spent in a nursing home of my choice, still with therapies to help him be mobile enough that he could transfer in and out of the wheelchair and (hopefully) get out in our car once in a while for visits and outings. By February he was permanently placed in the nursing home and all progress in mobility was lost. He gets into a wheelchair with the use of a hoyer lift and spends a great deal of his time in bed. He has had medical ups and downs over this year but, for now, he is stable. He is neither happy or sad. I know this is nowhere near what he wanted for his life but I don't know of any other option at this point.
     
    For me, I had to begin to address my own medical issues that I'd ignored over the course of 3 yrs caring for a very disabled man. In March I had surgery for a torn meniscus in my right knee. The recovery for that was several months. Then, in August, I had to have another surgery for a torn rotator cuff in my left shoulder. I am much better but still getting PT for that. Both of these injuries were a direct result from caregiving. Lauren is a bigger guy (not profoundly obese by any means but big enough). For the most part, Lauren stood and transferred at home on his own power. He needed many verbal cues to accomplish it, but I wasn't tugging and pulling on him. It was in the awkward transfers and the falls that the injuries happened. Trying to care for someone whose stroke is severe has its consequences. I'm okay with that. He had 3 years at home and I am actually quite okay with taking some hits in order to make that happen. I only wish it could have lasted longer.
     
    Now I find myself in a strange state of limbo. Lauren had a pretty big set-back a few weeks ago that had the nursing home asking me how aggressive I wanted to be. He seems to have come out of that issue but the question caused me to do some serious reflection. I am choosing not to be aggressive with his medical issues anymore. I know for a fact that Lauren's mindset pre-stroke would have been to have done none of what has taken place in the last 3 years. He has felt differently about that since the stroke so we've done treatments that have been life-saving. Again, I'm not sorry. However, right now I just want his life to be as pain free and comfortable as possible without a lot of intervention.
     
    In many ways I feel like a single person. Socially for sure. I don't have much time for a social life but I am aware that if I want to travel, go to shows, or even eat out with others, I will be doing those things differently than Lauren and I dreamed of for our retirement. Thankfully, I have a great group of friends both married and single but I must admit that it feels different now. I have discovered that more people were affected by Lauren's stroke than just him and me. Our kids, of course. What hit home pretty hard was the reaction of the grandkids to having me more available. They missed me and their lives were moving on without me. So this year has been one of reconnecting and being present for them and their activities. I still spend quite a bit of time and energy on Lauren's needs. I wish I could do more--make more of a difference for him. It pains me that I can't. But for now, I continue to just take one day at a time and try to make it the best one possible.
     
    ~~Donna
  3. djs202
    Lauren continues to reside in the nursing home. It breaks my heart but I have no other choice so I am trying to make the time as easy on both of us as possible. Of course, he wants to come home but doesn't realize that using a hoyer lift to get in and out of bed and spending most of the day in bed does not lead to home care. Months of physical therapy have gone down the drain because he can't help the aides get him in and out of bed. I really mean he cannot, cognitively, work to help them. He was absolutely making transfers with the physical therapists but went to dead weight when the aides tried to do it. They had no choice but to go to the hoyer for their own safety and his. I've given up trying to fix that and am just letting him be as he wants to be.
     
    Now the focus is on trying to get me healthy. So much work to do on that front! I hurt my knee in an awkward transfer with Lauren at the end of October. It didn't improve with time so I went to see the orthopedic dr. An MRI revealed two torn meniscus in my right knee which meant surgery. It was an arthroscopy, so not a major surgery but it was major enough for me. I'm about 6 weeks out and am doing much better. There is still some pain and stiffness but that will work out with continued exercise and time. Now it is time to address the shoulder that I can't sleep on. Rotator cuff, the doc says. We're going to start with exercises and possibly a cortisone shot. I really hope to avoid surgery again. That recovery looks to be much longer than the knee. Next up is appts to the eye doctor for vision changes and dermatologist to look at a couple of spots that are not likely to be a problem but who wants to take chances? I've been keeping up with my internist all along so I'm good on that front. Caregiving Lauren at home has taken a toll on both knees and shoulders. Still glad I did it as long as I could but it is clear that it was time to get additional help.
     
    I'm still in a time of transition emotionally. Guilt and sadness are with me much of the time. It is hard to motivate to do the things that need done. Springtime has helped, along with a wonderful visit with some friends for several days. I have a bit more energy right now and am trying to capitalize on that to get some tasks accomplished. It is still one day at a time. I feel like I do not spend enough time with Lauren and do not have enough time at home. Seems like I have one foot in each world and neither gets the best of me. But they each get what I can give and that is going to have to be good enough.
     
    I'm trying to catch up on each of you in your postings. It's been a while since I've looked through everything. Just know I think of you--both those I've had contact with and those who are new--and pray each one finds a measure of joy every day.
     
    ~~Donna
  4. djs202

    Ok, an Update

    By djs202,

    We are going through a transition and I am both re-energized and deeply burdened by it. As some of you might remember, Lauren took himself into the bathroom and tried to make a transfer on his own without the wheelchair brakes locked. He fell and was diagnosed with a compression fracture--the second fracture of this nature since his stroke. (In these fractures there is not actually a bone broken--the vertebra in the affected area of the back are compressed together leaving limited space between the particular bones of the spine that are affected. It is a painful injury though.) That happened the last day of October after a particularly gruesome week for me on many levels. After the firefighters came to get him up, I tried to keep him home but by the following day, I couldn't even get him up out of bed so on Nov 1 he went into the hospital. He hasn't been home since.
     
    Since that time Lauren has been in the hospital, inpatient rehab, nursing home rehab, hospital, back to rehab, hospital, back to rehab. That is where we are now with an expectation that he will transfer to a nursing home bed next week within the same setting where he is currently getting rehab. It has been a weird and difficult transition. He has done well with rehab recently. He transfers easily with physical therapy and me but the aides have continued to have some trouble so, no matter how much we try to get rid of the hoyer lift, it keeps finding its way back into the room, much to my extreme irritation. There are some aides who have shoulder injuries and I totally get that they need to use it. Once it's there, however, everyone keeps using it. So this is the next thing I'm going to have to address with the director of nursing. I'm done with dealing with all the others on this matter.
     
    Aside from that irritation, the place where Lauren is now is exceptional beyond words. It is a different facility from the one he has been in before and it has a 5 star rating from Medicare (the highest that can be achieved). Everyone treats him with the utmost respect and kindness. They have a chef on staff and are contracted with a local restaurant company owner who provides the food and menu. Residents can order their food like at a restaurant from a menu and get pretty much what they want within the limits of the menu. Every problem I have addressed has been corrected immediately with the exception of the above. Of course, the place is expensive beyond words too so I have personally committed to 2 yrs (just in my own head) to see how things go and how long I can afford this place. For now, it was essential to find an acceptable facility to ease the transition for him and me.
     
    In some ways, I keep thinking I can bring him back home. Perhaps that will always be true, as Sue once said. Actually, I know I could physically do the work better than they do...for a while. The problem is that it never lasts. I have gotten injured and Lauren has made devastating decisions and there are the many UTI's that continue to plague him. The problem is that I am only one person and right now he requires multiple people to assist with all his care and they get to go home at the end of the day. Every single person around me who really cares as well as his rehab doctor, who knows him best of all, feel I need to make this transition. Most of them have felt it for the last 3 years. I feel I need to make this transition. So why does it feel so rotten?
     
    For me, when I am home I feel I need to be with Lauren. When I am with Lauren, I am thinking about all the things that need to get done. I'm trying hard to balance those issues but it is difficult. I have a lot more freedom with my time--the ability to agree to do things outside of Lauren's care--but with that is the guilt that my increased freedom comes at the cost of Lauren's freedom. His confinement makes for my freedom. Not fair and not right. I can't make it okay.
     
    However, as the physical burden of Lauren's care has been relieved, my own body is now screaming at me. I twisted my knee in a transfer with him just a few days before his fall. I've been trying to let time heal. It has improved a lot but still pops and hurts when I straighten it out. Left shoulder hurts at night so I can't sleep on my left side. Wake up with low back pain. Just remembered I've failed to get my colonoscopy--one year past due. I had polyps once so I really need to keep up on that. Oh yes, haven't seen the eye doctor since Lauren's stroke and i have growing cataracts. I know you caregivers understand this. I finally saw my internist and am getting an MRI on the knee. Taking lots of Advil per her instructions and we'll see where to go from there. Next up, I need to schedule that colonoscopy. Oh, and it might be good for me to take down the Christmas decorations. Too soon?
     
    Keeping on keeping on. ~~Donna
  5. djs202
    I know I have been silent lately. I've been doing a lot of reflecting and thinking. A few caregivers here have seen improvements in the cognitive status of their loved ones and seen functional gains, some small and others significant. I've wondered if I was somehow holding Lauren back and not giving him the freedom to succeed. Meanwhile, some cognitive gains and continued hospitalizations for UTI's and assorted problems. One day I am in the kitchen reading the paper. Lauren is in the living room watching TV--open concept home so I should have heard but didn't. He decided to roll himself into the bathroom and try to transfer himself to the toilet. Without applying the brakes on the wheelchair. Without getting help. I decided to check on him in the living room--not there. Went on in to the bedroom--not there. On into the bathroom--on the floor softly knocking to get my attention. Ambulance call to help get him up. He wasn't complaining of pain so we decided to keep him at home. Next morning, I can't even get him out of bed. Another ambulance call to transport him to ER. Compression fracture of the mid back. Another lecture from ER doc about keeping him at home. "We are going to admit him but they are going to have a serious talk with you about nursing home." Okay. Fine.
     
    He has been in an inpatient rehab unit once again. This is the third or fourth rehab visit in three years. I think 4th. He is not making any gains at all. Just getting him to stand up is a major ordeal. They are using a hoyer lift to get him in and out of bed. Now, he will stand up for me but it is still much less functional than he has been. I have decided it is time for full time placement. It looks like he will get some additional rehab time in the nursing home unit before he moves to nursing home care. His needs are so complex both medically and physically and now I can't even trust him in the other room without me. I'm tired and just can't do any more.
     
    I have found a new facility that I feel very good about. It is expensive but I think it will provide good care and opportunities for mental stimulation that I am happy to see. It is a sad time. I had so hoped to not be forced to come to this point but I don't see any viable alternatives right now. I sure hope he will adjust well to a new setting. ~~Donna
  6. djs202

    Home again

    By djs202,

    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
  7. djs202

    At a Crossroad

    By djs202,

    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
  8. djs202

    So tired.

    By djs202,

    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
  9. djs202
    One of my favorite times is early Spring when I can get the pansies out on my deck. We went to the nursery last week and picked out the pansies but then we had bad storm predictions with hail so I delayed putting them in the pots. Yesterday Lauren's sister and brother-in-law came over to give me some time away and I came home to potted pansies! Wonderful help that made me smile. Pansies always make me smile. They don't last into the hot summer around here but I enjoy them all through Spring. Today is wonderful weather so I've had a bit of time out on my deck while Lauren watches TV. It's still too cool for him to enjoy the deck.
     
    I went to see my therapist yesterday while Lauren was cared for by his sister. It's been many months since I've seen her but this person has been someone I've seen in times past and she knows me pretty well. I've asked her to keep watch on how I'm doing during this very stressful time of life. In my last post I mentioned how low energy I've been lately and that things seem more difficult than normal. I've been quite short-tempered over things I need to be more compassionate about. She, of course, wants me to go on something. Antidepressant, mood-booster, I'm not sure what and she's not qualified to prescribe so she wants me to go to my doctor and ask for something. And I'm supposed to call her when I've had my appointment. Keeping my feet to the fire. But I asked her to do just that. I am very resistant to taking something for depression. I guess I want to believe I can manage the things that trouble me in other ways. I guess not now. So stroke has resulted in me needing to take blood pressure pills and anti-depressants. I don't like it. But I have to stay healthy as possible both physically and emotionally so I guess it must be.
     
    I have a friend from California coming for a visit this afternoon. She's staying with us for a week. She'll be attending a conference so I won't see her a lot but I am so glad to have her coming and being able to visit in person some of the time this week. I've also gotten some extra private duty so I can attend an event with her this week. She is a good friend who I don't see often. This will be a good week of sharing.
     
    Lauren is sitting all off kilter these days. He leans way left in his wheelchair. I must remind him to shift right 8 times an hour or more. He shifts and then immediately begins drifting back left again. It's quite a bit more profound than usual. He has severe left neglect so that has to be related to it but it has increased. He has no awareness of his position. I don't know whether to be concerned or just chalk it up to the side affects of stroke. He has an appointment with his neurologist in two weeks. Probably wait till then to address it.
  10. djs202
    I haven't blogged in a while so thought I'd try to give an update. We are still in recovery mode from that lumbar compression fracture last October. The acute issue is resolved. He's no longer in pain and has returned to pre-fracture condition mostly. He's still getting some outpatient PT. This may be our last week and I'm okay with that. For the first time ever, I think we've reached a point where I can walk with him by myself and manage pulling the wheelchair behind without fear of him falling. I did go and get a heavy duty wide-based quad cane. That seems to be the ticket for more manageable walking. The hemi-walker is just too cumbersome and the small-based quad cane we had was just too flimsy. This one works well.
     
    Our main PT has been pretty good but I had a bad experience with the one who was supposed to be a back-up. She sat down with us for 5 minutes and then began peppering me with suggestions about how I could accomplish all the things I have found it hard to do--like walking with him by myself. None of the barriers I put on the table were considered valid. She could hardly hold back the scorn for me as a caregiver. That episode set me back for a good week. I was mad at her and also questioned myself. I allowed her to make me feel like the lowest life-form on the planet. She could figure out how awful a caregiver I was in just 5 minutes? Really? Without even knowing Lauren and the effect of his deficits? Without ever working with him even for 5 minutes? She worked with him another couple of times when the regular PT was gone. Then I went and requested a schedule that would only be with the regular PT. That has worked and my blood pressure is back to normal. She's the first person in all his rehab experiences who has been like that with me. Oh well, it takes all kinds to make up a world, I guess.
     
    Lauren has another UTI. Story of our life. This one has some very resistant bacteria. He's been through one round of oral antibiotics. One of the bugs got knocked out but not the other. Tomorrow we have to go to the outpatient surgery area for the placement of a PICC line (longer lasting IV) so he can get IV antibiotics for 10 days. I get to administer those once everything gets established. I'm good with that. One thing I do feel comfortable with. These UTI's do worry me. One day there could be a bug that's resistant to everything. He's about there now.
     
    I've spent the last several weeks in the most depressed state I've been in since the stroke. For the first time I have wondered if I need to get on an anti-depressant. I don't want to do that even though I know it might be necessary. Time will tell. I do see a therapist every once in a while. I've asked her to keep tabs on me and let me know if I'm heading down a worrisome path unaware. I don't get in to see her very often these days but I still try to check in every couple of months. Self-care has been a very important issue for me in my pre-stroke life. The American culture glorifies busy-ness to the point it is unhealthy, even deadly. I think it's easy for us caregivers to fall into that trap and give ourselves away completely to the one in our care who is so vulnerable and needy. We deplete ourselves to the point of illness or injury. I don't think that serves us or our loved ones in any good way. I can't go 24/7 without a break. I need time away from this caregiving and I have been blessed to have family and friends that help me get it. Beyond that, I pay for private duty as I can afford to get assistance with Lauren and additional time away. Next week there is an event on an evening I don't have help. I rarely go beyond the schedule but this event is one I know I will be sad about missing. So I've arranged private duty for that night and I'm going. Expensive night out? Yes. Necessary? Absolutely.
     
    ~~Donna
  11. djs202

    Respite week completed

    By djs202,

    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
  12. djs202

    SNF, for now

    By djs202,

    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
  13. djs202

    Transition ahead?

    By djs202,

    I've avoided writing anything for a couple of weeks because I simply didn't know what to write and have been more than a little overwhelmed with what is going on. Lauren's sister came for a few days to give me a holiday. She has done this before a couple of times and it is so appreciated. I always get private duty aides for every night she is with Lauren so she doesn't have to put him to bed and get him up in the morning. A couple of days before I was to return she called me and said she couldn't get Lauren out of bed. He simply couldn't stand at all. She called 911 and he was placed in the hospital with a UTI and a lumbar compression fracture. This is a new compression fracture but there was no event that was known to cause it. I assume he took a harder than normal landing on the stool since one of the aides wasn't as familiar with him as the other one. The UTI was probably causing him to be less balanced than usual. I don't blame anyone for this--it just happened.
     
    After several days he seemed to do better and I was able to transfer him to and from the wheelchair so we came home. Next morning I can't budge him an inch. I had Home Health PT who helped me get him up that day but the next day was the same and even she had trouble moving him. His tone had kicked up so severely that he wasn't even able to bend at the waist. It was like the tone has now affected his torso as well as his arm and leg.
     
    Long story short, he is now back in the inpatient Rehab unit he was in after his stroke. He's been there a week and has this coming week approved by insurance. He has not made much progress at all. He won't even lean forward without much coercion or actual force. He requires two people giving maximum assist to transfer anywhere. He won't stay up in his chair any length of time. Spends as much time in bed as they will allow and constantly hassles them to put him back in bed when they make him stay up. The unit uses a scoring system to determine his level of independence. He is the same score he had when he entered the unit immediately after the stroke and was totally dependent with everything. It's all very disheartening. Since he's not making adequate improvement, it is likely they will not approve a longer stay in Rehab.
     
    I'm looking at skilled nursing homes to move him to. There's no way I can care for him with the level of assistance he needs and his unwillingness to push through his pain for mobility. He's being medicated for pain as much as possible without knocking him out. He's getting increased meds for the tone. Lauren has never really engaged in the process of recovery. He generally does what he is asked to do if it doesn't require too much effort but there is no carry over to learn a task and repeat it on his own after time. Two years post stroke I am still giving him the same cues for the same tasks every day.
     
    I know he has a compression fracture and I know it will take several months to heal. What I fear is that this is the end of him being at home. If he won't work to recover, the result is going to be that I can't manage him at home. He's 64 years old and completely aware of his surroundings. I can wrap my brain around a short stay in a skilled unit even though I hate that. But I'm not ready to wrap my brain around a nursing home stay from here on out. It almost makes me sick at my stomach to think of it. It would be different if he wasn't so aware. It isn't that I believe he will have lack of care because I will make sure it is a highly rated nursing home. It is that he will be living with people who are 15-20 years older than him who are generally much more mentally impaired. Bingo and singing songs from the 40's just won't interest him. I am heart-sick.
     
    Donna
  14. djs202

    "New Normal"

    By djs202,

    They say when you learn to live with Stroke, you must find your "new normal". Most of us don't particularly like the aftermath of Stroke and we spend some time resisting the new life we must lead. The only thing I know about "new normal" is that you wave goodbye to it as you speed by on the roadway to wherever Stroke is taking you now.
     
    Lauren had a grand mal seizure yesterday morning and is now back in the hospital getting regulated and dealing with a low blood pressure. The event itself was very scary and quite dramatic. In the end it is a stroke-induced seizure disorder. Thank you, Stroke.
  15. djs202
    I'm making my first attempt at blogging because I have some decisions to make and could use some input from those who have experienced what we are going through. My husband, Lauren, had a large right sided stroke in Dec of 2010. He has many deficits, is wheelchair level mostly, and requires full time care. He can walk with help of one person and a second to bring up the wheelchair when he tires. He is not strong enough to walk functionally, only to get him up and keep trying to increase his strength. He needs help to transfer, bathroom, shower, dress. He eats independently and can brush his own teeth and shave. The rest requires help or cueing to accomplish. He has been incontinent pretty much since his stroke. For a while he was able to make it to the BR occasionally but never consistently. He has an enlarged prostate that complicates everything. Our biggest medical problems since stroke have been related to bladder infections. Several months after his stroke he developed retention which caused severe reactions in him. His spacticity (tone) kicked up big time and he was just wild with discomfort. A trip to the ER and his first catheterization yielded an output of 800 cc's. Every effort to get him off the catheter since has been unsuccessful. So he has a catheter in which causes repeated UTI's that require hospitalizations and IV antibiotics. The last one was urosepsis--it got into his bloodstream--and he was very sick. The urologists say the retention is a result of his stroke.
     
    We went to a specialized urologist who works primarily in bladders affected by neurological issues. He had nothing to offer us. Lauren has an overactive bladder and our options are catheter or have me straight cath him routinely throughout the day and try to leave the long term catheter out. If I choose to straight cath him it is likely he will "leak" so will be regularly wet. The option of doing the catheter through the abdomen (suprapubic) is apparently out because he has previously had a diagnosis of bladder cancer and if the cancer ever returns, there would be an open portal from the bladder to the other organs.
     
    Here's my dilemma: I have worked out a process of help that allows me to get away about once a week (his sister comes and stays with him) and I have a private duty aide who comes 3 nights a week so I can get sleep. She also showers and dresses him in the morning. Neither of these helpers will be able or willing to catheterize him. His sister had to do some heavy thinking to decide she would be able to help bathroom her brother. My daughter is the next level helper--again, how can I ask his daughter to catheterize him? So my entire support system will go out the window if I choose that option. This, of course, is the option the urologists want me to choose. To them, getting the catheter out is what needs to happen. Obviously, I want the infections to stop too. But I'm not sure I can handle the consequences of that choice.
     
    Keep catheter in: he is dry and skin breakdown is kept to a minimum. Helpers around to ease the burden. Infections cause him to have multiple runs in hospital and IV antibiotics. Risk for him to someday develop a resistance to the antibiotics.
     
    Take catheter out and straight cath as needed: leaking will lead to additional issues with skin breakdown, support system out the window. Minimize UTI's thus decreasing hospitalizations and IV antibiotics. He is on Coumadin so continued straight cathing throughout the day increases risk for injury and bleeding, especially with enlarged prostate.
     
    In a about a week I will be taking him to the urologist again for a catheter change (has to happen once a month). I know he will be pushing me to try the straight cath route. Any wisdom to offer me as I consider these options?
     
    Donna