Overwhelmed about Lifts and Home Modifications

Last July when we met with the OT at the CDC Clinic, we requested an in-home consultation to discuss ceiling lift systems in Annie's room.  The OT came today for that consultation.  We were extremely discouraged when she saw Annie's room and vaulted ceiling and said a ceiling lift and railing system wouldn't work.  She's recommending a hoyer lift, which all our Aicardi friends have told us is large, cumbersome, and takes nearly 10 minutes for a transfer--most keep their hoyers in their garages!

With Annie weighing 52 lbs now, we still feel perfectly comfortable lifting Annie by ourselves since we've grown used to her weight slowly over time.  And we've been extremely blessed with a nurse who is comfortable lifting Annie too.  But we fear that someday we'll have a different nurse that won't be able to lift Annie--we had several nurses in Texas who refused to lift her.  So in order to make sure that we can maintain in-home nursing care, we know we need a lift system.  But the consultation today was extremely overwhelming.  We really don't want (or have space for) a hoyer, and the OT was even saying that 52 lbs is too big to be lifting into a bath chair.  She was telling us about how dangerous it is to ourselves not only to be lifting Annie, but to be twisting our backs as we transfer her from her bed to her chair or bath chair.  We aren't worried about it--maybe we should be--but the OT was explaining that we need to start the process of converting Annie's tub/shower into a walk-in shower.  We thought about doing this when we built the house, but our builder wouldn't make any "handicap" modifications like that just in case we ended up not actually buying the house.  So we always thought that down the road we'd need to convert her bathroom, we just never imagined someone telling us we needed to do it now.  One of the issues is funding.  We belong to a program that will pay $5000 a year for home modifications.  It's a slow process to get approval and actually get the work done, so the OT thinks we need to start now.

After examining our ramp for Annie in our garage, the OT suggested that  installing a lift in place of the ramp some day would also help.  I had actually never thought about that before, but realized we'll need to do that once Annie starts getting a little heavier.  Our ramp angle is much, much steeper than what code dictates and I know it will only get more difficult to push Annie up the ramp in her 90 lb chair.

It's an extremely overwhelming thing to consider--the reality that Annie is getting so big that some day we won't be able to safely lift her, or even be able to lift her alone at all.  Today has been one of those "chronic sorrow" days when again, we realize how different our lives--and soon our home--are from the normal population.  I wish so badly that we didn't need to worry about such extra equipment and home modifications just so our own daughter can live with us.  It's incredibly difficult to plan such major permanent home modifications when we don't even know how long we'll get to have Annie with us. I so desperately wish that Annie could just wake up one morning, sit up, and get out of her bed herself--a small thing that most people take for granted.  I look forward to the next life when Annie's body will be fully restored and she can run up to me and hug me and I can watch her dance.

But for now, our MDE supplier is going to bring a hoyer lift for us to try out for a few days to help us in making that decision.  We already know we wouldn't use it--at least not anytime soon, but if anything, we could bring it in from the garage whenever a nurse came to take care of Annie. A hoyer requires a good 10 minutes or so to do a transfer--another reason I doubt we'd ever use it since we're able to lift Annie ourselves so quickly and easily.  Another drawback is that the hoyer can't be used to get Annie in her bath chair with her current bathroom set-up since the hoyer can't get under the tub, but the OT suggested we could modify the tub so there's empty space beneath it, or just do a walk-in shower and get a bath chair with wheels.  Anyway, here's a video showing how the hoyer lift works for those of you who have no idea what a hoyer lift even is.



One Aicardi friend has made the point that even though they have a lift system, they still lift their 85 lb daughter themselves in order to keep their muscle strength so when they are traveling or away from home, they know they will still be able to lift their daughter themselves.  They realized that they will not always be where a lift is accessible, and I fully agree with that reasoning.  So now that I've vented all my frustrations and overwhelming feelings, I'll return to my "normal" life.  We'll try out a sample hoyer and probably sit on all these decisions for a long time--at least another year--and I'll try not to think about it all!