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Looks like the time has come


djs202

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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

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Donna :

 

I know this must be so hard for you, but life is hard sometimes, and sometimes it is hard to believe that change will be good. but all we can do is trust in God & I feel things will turn out fine when we are doing our duties right.

 

Asha

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That is the scariest part, when our strokers can do enough to get into trouble! I guess none of us know what is around the corner. Bob could improve for months, and who knows what disaster is waiting around the corner. We have to just take it as it comes and enjoys our successes while we have them.

 

It must be very painful to have a compression factor and being got up... or maybe even just laying still. Also, those UTIs really mess with their ability to think anything thru. I'm sorry this has happened. I remember when Bob pulled one of those when he was back in his hobby room. He had a wheeled office chair that he could fly around the room in, safely. But got back there and decided he could walk... and without so much as a cane! Of course he went down hard, and I was terrified he'd broken his hip and I knew I couldn't care for him with a broken hip. He has done about 4 of those really stupid things that could end very badly. None lately, thank God. I think he has finally recognized that he puts himself at risk - still I don't think I could trust him on a day when he is not as cognitive.

 

Sending you lots of hugs & prayers... I know you are exhausted and overwhelmed.

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Donna: I am so sorry. I can only imagine the pain you are going through right now.

I am sure others will arrive who have had to make this decision. You've done your homework, picked a solid home you are comfortable with. I hope it is close by.

 

Auto pilot - I am sure. Please know that all my thoughts and prayers are with you. I pray you have some family/friends you can hunker down with for the holidays, just for a break and maybe a good meal, some quiet conversation while you are shuffling back and forth.

 

I pray Lauren's transition is smooth and he is able to settle in comfortably. Please do come often and let us know. Debbie

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Donna, I guess we always fight even when we know the time has come. I had Ray in the nursing home for 12 months. It was so long in emotional terms. It wasn't the solution I wanted but in the end I could see that it was all I could have done.

 

It is hard to make the transition, hard for him, hard for you. I don't think I would have ever got used to the move being permanent, right to the end I thought:'What if?" But it was what it was.

 

Thinking of you (((hugs))) from Sue.

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Donna,

 

There's no doubt caregiving is a very difficult job. As much as we survivors hate being treated like children, in most cases caregivers have to straddle a line of giving your survivor the room to make mistakes yet still make decisions that are hard in favor of safety.

 

No one can doubt that you have done exactly that. I think one of the hardest, most loving and strongest things you or any caregiver can do is recognize when it's time to get help. I think guilt (undeserved) will be a persistent companion for a while but it truly is undeserved.

 

I, too, hope Lauren's transition will go smooth for him AND for you.

 

Jamie

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Donna, I send love, hugs and prayers for Lauren's and you.

 

Please do not feel guilty, you gave it your best, I think you caregivers are wonderful, but in terms of safety and your well being, this seems the right move.

 

Keep in touch

 

Yvonne

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Donna.....don't feel guilty (I know you will anyway) I have been there-done that. I watched the changes in my hubby for 8 years (5 after diagnosis). He continued downward no matter what I did. Then one awful day it took it's toll on me...a 10 hour nosebleed...he got in the car to drive to find me - a no-no (I was in ER) and had a wreck. He suffered a broken hip and was in the hospital then a nursing home. Sometimes, we have no choice...do what is best for both of you and know you tried your best.

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Donna, we as caregivers all think about the time when we may have to make that decision. We do our best to keep them safe and healthy at home and hope the time never comes to place them. Then, we can still love and care for them and make sure others are giving them the best care.

 

My thoughts and prayers are with you both and keep in touch.

 

Julie

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my heart goes out to you donna. I guess when you come to a point when you realize that you really can continue, you not only really can't, you likely shouldn't.

 

there is no guilt, there is only the reality of life. you are doing what you should do.

 

best wishes to you both.

 

david

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Donna - this is YOUR choice - dont be bullied into it by a guilt giving doc....really Lauren will still fall at the nursing home and chances are he would lay on the bathroom floor much longer...... BUT I want you to do what you want/ need to do... no guilt involved either way.... this is your and Laurens decision not some guilt giving doc... who hasent a clue - they are not all knowing,, believe me... and social workers if involved - idiots as well... most have no hands on experience -- seek out someone with hands on - been there dont that to guide you.. they exist..

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Thanks everyone for your kindness and care. I take to heart your guidance to be guiltless and, yet, I remember Sue stating at one time that you are never really free of the guilt when you are making these unpleasant decisions. I think that will be true for me but I do try to keep it at bay.

 

Nancy, it's that fire in you that keeps you being such a fierce and diligent caregiver to your Dan. I love it and I think you're a rock star caregiver. No doubt! This has been my decision. I mentioned the ER doc because he has seen us twice--both times when Lauren had a compression fracture and I got the lecture both times, a year apart. The first time I was really irritated for all the reasons you mentioned. The second, I did see the truth in what he was saying even though not yet ready to give in. I think we have to rely on all the input we get in order to stay honest. We might not like what we hear but we have to consider it first and then reject or accept it. I think most people are trying to be helpful even if they often miss the boat.

 

I know it's time for us. Others might make a different decision, I don't know. These last several months he has been in the ER and the hospital and acute rehab and skilled nursing home care and home health PT and outpatient PT more than he's been free of it. It is getting worse not better. He needs to be where a doctor can be consulted quickly and several people are available to help him when there is a need. Just the other day in rehab, he started to slip out of his wheelchair. He didn't actually fall to the floor but it still took 4 people to get him back in the wheelchair.

 

I will continue to be Lauren's advocate and loving support. And I will continue to check in here. This site is strongly geared toward managing stroke recovery at home, as it should be. But a few of us have to do it a different way and that is the truth about stroke recovery too. So glad for all of you and this site. Helpful beyond words. ~~Donna

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Donna, I wasn't sure where you were in the process when I read your first note, and thought it all hadn't really happened yet, that he had just fallen and shown a compression fracture and you were still waiting for the doctor 'talk'. I believe I see now that that was more in the recent past. I suppose my answer sounded strange because I didn't know you were already past that part I was talking about. Anyway, I'm glad to see that you feel secure in your own decision and following your instincts on it.

 

I don't know.... I haven't been here all that long... but feel like it is a place for every stage of whatever stroke brings us to deal with. Remember that you are walking a path that many the rest of us will walk one day, and we'll feel afraid and unsure as it's happening. So I guess I'm saying, don't stay away because you don't feel you fit in anymore - that's just not true. If it's more like you just need some space, then you know where to find us when you feel the need.

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Donna, I'm a new at this. y husband had a right brain deep tissue stroke due to lack of blood flow. He had polio when he was 14, was told he would never walk and yet he did. In fact most people did not realize that his left arm and right foot were weakened by the polio. Now he is left with 1 fully functioning limb, his right arm. Transfers require two people at 6 weeks out from the stroke. Of course, my hope is that he will be able to transfer and come home, but your story may be my story. If so, I pray for the strength that you have shown throughout this journey. God bless you and Lauren as "love never fails." robangell

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Donna, I hope he does too and it may be easier than you figure in the long run! All the best for him and for you down the road!

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Donna not that you need my blessing ( LOL) but - i want only what you want - and that is for lauren to "safe" and you my dear have made the decision for all the "right" reasons... and you will continue to be the loving , supportive caregiver you always have been... Ijust didnt want some Doc who may or may not ( chances not) "get it" if you are ready , youa already and so is lauren --- who knows - i fought so ard to keep dan out of one for rehab, and it turned out to be one the BEST rehabs he had - so who knows... either way you will be coordinating it all and Lauren will get good care - cause YOU will see to it.. and hey nothing in strokeword is concrete... this could be a good thing... it certainly will be for you in terms of the emotional drainage ..OHHH so nice to wake up , and not immediatley JUMP into caregiver gear... this way you will get a few minutes to gather your thoughts and your days plans... and the time spent with lauren can be good and happy times ... bless you both ...i am sure i will one day write a post similar to yours... their is only so much any human can take...

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