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Ok, an Update



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


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Donna, when you partner goes to a nursing home you get a form of "survivor guilt". You can try counselling but maybe to best thing is just to ride it out. You have done all you can and it is time to turn over his care to a team of people, you are only one exhausted person and that is just a fact of life. Because of that exhaustion you will make mistakes and have some associated problems so also take care of yourself.


If the nursing home is good let them take control of his care with you on the sidelines making some adjustments as you go. Your opinion in all matters should taken into consideration, you are the one who knows him best. I was pleased Ray's nursing home allowed me some input into his care as it made me feel I was still his caregiver.


If anyone comes up with some negative line like you are no longer a caregiver ignore them, they have not walked the floors of a night with you.Right now you need to concentrate on getting yourself back into good shape knowing that visiting Lauren will take a toll on your health too. (((hugs)))



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Hi Donna, you know deep down Lauren is in the best place. Plus he is doing well, and the staff listen to you, so you are still invouled in his care. Dont listen to any one who has something to say "let them walked a mile in your shoes" . Take care of your self, that is imporant, as Lauren still needs you.


God bless



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Donna- my heart breaks for you, but also sings for you... knowing your reality will become my reality - someday.... You are doing the right thing, the only thing to be done... God Bless.... nancyl

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Donna: thank you so much for updating us. I can't tell you how often I think of you and Lauren and how things are going.


Do you remember way back, first months after the stroke. Lauren in Rehab? Their days are scheduled: meals, PT, OT, medications, Activities. You rush to get there, check in with the Nurse to see how things are going, only to find they are sleeping or having some time out with newspaper or TV? So you sit and then think of everything that you dropped to get there and what still has to be done at home. You have circled back.


For right now, as Sue advises, take this time to see to you. Get all the medical stuff seen to: Physical, OB-GYN, your Mammo, Colonoscopy, Eye Exam. I think if you take this small amount of time offered to you and use it in a positive way, it may help the guilt a bit.


I am so relieved that you have found a place that you are comfortable with. And the accomodations for Lauren sound top-notch. And yes, you oversee. Offer your input. You know Lauren the best. Develop a good relationship with the Charge Nurse and the DON. You are insistent but not over-bearing. And just see how it goes. You are going to know in your heart if it is right. I am sorry about the cost. But you have to take heart in that you got to choose. So many can not.


Nothing in this journey is stagnant. You know that. You regroup at certain intervals and re-eval. Something you have done since day one Stroke.


Go easy. Know you are both in my thoughts and prayers. Debbie

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Wouldn't it be great if the mind and heart ever got on the same page? In every rational way this is the best decision for both you and Lauren but the heart screams NO! and pours on the guilt. I could list the ways that guilt is unjustified but I doubt it would change the way you feel. Just another way stroke drives home that life has nothing to do with "fair". I just know you to be a thoughtful caregiver and friend.



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Donna, we all have hard decisions to make about our loved ones. Even if we keep them home and something bad happens, we are still on the hot seat, just a different hot seat. I know how hard this must be ... I think all us caregivers live there if we let our minds wander... so we try to focus on just today. Sending my prayers and hugs for comfort. -Sandy

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