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At a Crossroad


djs202

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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

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You're stuck between a rock and a hard place. I hate to say this, but I don't know what I'd do in your position. Hope you figure it out somehow. And let us know so we have some ideas ourselves.

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Donna, if you cannot transfer him and care for him at home, you don't have much choice. It sounds like he needs round the clock care. It is so hard for us to make these kind of decisions but we do what we can do. My prayers are with you to make the right decision for both you and Lauren.

 

Julie

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Donna,

 

I know for sure you are struggling right now with decisions that at some point has to be made by you at no one else could possibly make. That being said I sure don't know what to say or even suggest to you.

 

You are at a crossroad and I have no idea which choice is better where you are. You know he does better at home with you so perhaps you must think along those routes to take but who am I to say? If that can't be done by you then you have no choice but another home. See if you can think about which way to go, then pray, and go with your decision.

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Donna: first off, it is OK that he is being de-certified from therapy. This is an insurance decision, as you know.

 

Ask for a team meeting - you want Therapy Supervisor, his therapists (PT and OT) and his Clinician. And you want the truth. They have seen and dealt with this, professionally. As they give you their evaluations and suggestions as to the future, you know Lauren the best. You will feel, in your heart, what is right and what is "off."

 

But what you truly want to know, is can Lauren be dc'd home, with help, safely at this time. It may be 24-7 and then only you can decide. It may very well be that you will have to keep him there - especially if he connects with his therapists and they advise he is working hard and making progress, even if not up to Insurance standards. And maybe private paying for therapy.

 

I agree with you, that to just place him might just put him further into depression. And you do have to look into Money Follows the Patient. Because maybe you could take him home with plenty of help.

 

And the one thing I would question is the back twisting. There maybe a hip or knee issue there that is new. Xrays at least. You know how he moves. If this is new, needs to be addressed. Maybe just a new brace would help. And if available, maybe some pool therapy. If you can place him in the right place and private pay some pool therapy may help.

 

If you can get hooked up with the right Home Care Agency, there may be extra help there.

 

You have done this for years. You know the questions to ask and regardless of the answers, none of this is going to be simple. Look to your own strength and knowledge. It may not feel right in your heart, but your head has to rule.

 

Please know I will be thinking and praying for you both. Debbie

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oh -- i am so thinking of you-- and knowing this will someday be me.. ---- i can only imagine , and we all have hundreds of times this senerio play out in our minds... I hope something both of you can live with can be worked out... But always know you have given 1000% and what ever decision is made is most likely going to be the only one that can be made... I truly hope some of debbies suggestions could work for you.. in all honesty if you dont have much of a income home health of some type should be able to assist you...with aids - at least to help with transfers and what not... also there is equitment designed for this situation --- start researching what you would want/ need and contact hero in Fargo ND and see if they have what might help you .. - believe me they might... the device and debbie help me out basically is a lift of types ( NOT HOYER LIFT) but one where the person holds onto and it assist the person from a standing position or sitting position and puts them into either a standing or sitting position.... it is designed for someone who still has some muscle and ability ( not much but some) if hero in fargo has one-- it will be very low cost and i will see what they can do to help you obtain it..... if i can find the name of the device i will post it later-- debbie as i said name it if you know it... we used one for dan while he was in the hospital so weak.....

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