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Just another day in the life...


djs202

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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

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Donna --- first off thank you for your wonderful, thoughtful post on my blog... and i am consciencely making a attempt for me time... and i do have the resources for it ( kids galore) around here.. dan will also be having surgery soon for much the same reasons as lauren.. dan will have a port put in instead of a pic line... we anticipate his issue to be basically forever.. so we might as well plan for that... the port will do the same as the pic line just is more permanent... the doc has seen some last as long as 20 yeas but made it clear it might only make a year before a new one has be placed.. forgien body so rejection/infection a possibility..I am on a antidepressant ( sertraline) i dont think i could weather the highs and lows of my life without it.. i tried once to go off them - back in my working days ( with dan at home) did not go well... it wasent a conscience decision to quit it just sorta happened.. script ran out and the phone call was to much to do... it doesent help in a magical way but i for sure have a more even keel.. and they are cheap even out of pocket cheap... so if you are thinking at all about it , for me it helps.. i will try to do better for myself , and we should all do the same...

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Donna, we have all been through those therapists who think they have all the answers. I have had problems with the OT's. One sent Larry home with pages upon pages of exercises. You can guess how that motivated him. lol We changed OTs when it was time for him to go back for more therapy, and she tried to take over again, but I stood my ground and said we are to have another therapist. Another OT was good but never gave much praise when he accomplished something. She would say "he should have been doing that all along". Caregiving 24/7 is a most difficult task. Shouldn't they be more helpful to us both?

 

Yes, enjoy that night out. You deserve it.

 

Julie

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Donna: thank you so much for checking in. You are so supportive of all us "newbies." Like Sue, walking us through the issues. Never a been there, done that attitude. Knowing you were there at some level, just like we are now. And guiding yet another caregiver through the maze.

 

Don't you dare let some "wet behind the ears" therapist make you second guess yourself. We can do that enough for ourselves! LOL. And how narrow minded is that thinking your specialty is the only one I am dealing with! I always go back to conversations with Ruth, who is working full time and caregiving. Trying to get William healing, taking him swimming every single day in addition to his therapies and appointments and gets handed a 16 page list of OT exercises she is supposed to do with William every day. How Dare They?

 

Change of season is always tough for me. I seem to go through all the things I am supposed to do - in regards to the house and yard, try to find new projects for Bruce. And it is funny, because Bruce did this to me! He is so sensitive to season-light changes. Pre-stroke all I could think of was should I change my hair color?

 

This very minute I am considering my options for tomorrow night. Like you, I scheduled a caregiver to accomodate work. The work issue was cancelled. Do I spend the night putting down the stuff needed for the lawn to save the landscaper cost or do I have a dinner with my best friend - time I desperately need right now, coming off the new diet changes.

 

I do pray you are only going through a down time. Donna, I always cut off thoughts of the future beyond a few months. I am well aware that after I spend the amount of time you have with this caregiving, that will not be possible. I only pray that I can get through it with the grace that you have.

 

You go girl! Yes, it is a treat and not in the budget. And it is very rare. A special night and you deserve it. Don't you DARE feel guilty. Prayers and please be well. Debbie

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