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Our midsummer update


1967stingray

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Figured it’s time for an update, nothing major but we’re moving along I guess.

 

We go Monday to see the orthopedist, to find out if Ray’s arm is officially “healed”. Luckily the break was minimally displaced, plus it’s his paralyzed arm, so he hasn’t needed a cast or sling. That does makes things tough for me, I didn’t realize how much I used his arms as hoists, to get him up or position him, but we’ve worked it out and I haven’t wrecked my back so far. We’re also finally doing OK in general, getting out on lots of local journeys a few times a week, plus he is back in therapy and they are getting him a little stronger overall. He lost most of his mobility between the terrible weather this winter, and the useless aides who let him sit there without any interaction at all, while he could have been out shopping or whatnot with me. Even if it’s just a car ride and then he waits for me to run in places, so much better than nothing. I never considered how doing nothing would add up over time. I had only just been getting him up again with the AFO and hemi walker and thought things were coming along, until he fell. Now he won’t go up the stairs, won’t even go into the front of the house, stays mostly in the den, and is still sleeping downstairs on the couch. He did go out on the driveway to supervise me yesterday when I cut the lawn, followed by a trip to the local truck for tacos, so it could be a lot worse. And as always, he has a nice tan to show for it all!

 

I’m always looking for something cheap/free to do, so we went to one of those eldercare lawyer dinners where they were pushing their agenda. This one was about wills vs trusts which is something that is on my mind lately, so I figured what the heck. Ended up being a great sit down meal at a local country club/golf course, with fun and interesting co-diners; an hour of eating and talking at our table followed by an hour of great information from the lawyer/owner of the firm. Unfortunately Ray was being a brat, I told him it ended at 8:00 so when they served the dessert and coffee at that time he started scooting himself out (with his takeout container on his lap! They were very generous) so I had to run. I wasn’t planning on making an appointment to follow up immediately, but their first lawyer consultation is free so maybe after we get back from our trip next month.

 

Speaking of which, I have been putting off getting on an airplane since the stroke (especially now, after the disaster in the Ukraine) but my sister in San Diego browbeat me into going to a (partial) family reunion in her husband’s hometown of Cody Wyoming. She has been very cold to me since we didn’t go to her daughter’s wedding two years ago, not long after Ray started his seizures and well before we got them under control. I punked out then and I don’t think she had forgiven me. I was secretly pleased she persued the issue until I gave in, hopefully a full reconciliation is in our future. Her husband’s cousins own a dude ranch which we’ve been to before, it used to be Buffalo Bill Codys so it’s somewhat popular. However I am now terrified of Ray’s current unexplained urinary incontinence; when I mention it to his various doctors none have any solutions to share. Is it from sleeping on the couch while I’m upstairs (although I’m a light sleeper and hear him when he calls)? It’s not an infection, we had that checked out. Our last scheduled doctor visit before we go is on Monday so I will corner that doctor (orthopedist, but whatever) for a possible solution. If it involves seeing an urologist, so be it. Ray’s a little better the last week or so, sometimes even makes it through the night, but then it happens during the day. Oy vey (as we say here in NY!).

 

Anyway I’ve been finding free things for us to do every weekend, not hard where we are, while I have the aide agency on hold. I am getting Ray out often for shopping and errands and whatever else comes up. I may have waited a little too long, but hopefully we’ll get up to speed again. I do worry that Ray is entering some kind of natural decline at this point, but I’m not taking it sitting down!

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Well, I won't take up all your time reading my comments so I'll just make one on Ray's unexplained urinary incontinence! I just went to my doctor yesterday at the VA. I had not been in a long, long time and he examined my prostate and said every thing looked and felt fine to him!! So no cancer or anything unusual!!

 

I take Finasteride 5 mg tab at bed time nightly along with Tamsulosin 0.4mg capsule which is suppose to regulate my urinal flow during the night!! It works great for me having a steady flow into my urinal at night. Saves me a trip to the bathroom with my cane... I have been on this med for years and it works to regulate my going to the bathroom day and nights!! My case is enlarged prostate and this is working so no operation needed...

 

When I first came from the hospital (10 years ago) I slept downstairs in a hospital and my wife checked on me at times during the night... I was sure glad when I could walk the stairs so I moved upstairs in our big bed with my wife and still right there. I can empty my own urinal in the mornings the bathroom is only 10 feet from our bed!! We used a little buzzer two way radio to call each other at night!!

 

Hope Ray gets better after seeing his doctor, I'm sure he will since he's not as old as me yet!!! Take care!!

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Col: it was comforting to read your blog and someone who understands exactly what I felt happened here. After four weeks of coming home from work, putting a sandwich in front of Bruce, shoveling snow, helping him toilet and nap, shovel more snow - Bruce barely knew his own name. And it has taken months to get him back to some semblance of normalcy. And yes, it was imperative to get him back into PT soonest. I do hope Ray will continue to make strides back to a safe zone for him.

 

You do have so many great things happening on the Island and following your summer has made me more attentive to what is going on around here. Although come August 2nd, I do have lots to do right here at home.

 

Your trip is going to be amazing. Consider the Texas Catheter if you must, just to relieve some stress for you, at least travel days. And I pray things will smooth out with your relationship with your sister.

 

By the way, I found my Financial Advisor exactly the way you described. Free seminar and free first time consult. Go for it. Even if you don't want to go any further, all knowledge is good. Debbie

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GO -- GO-- and GO ---------the plane business across seas- it is what it is.. move on with your life -- throw the fear away, it does not help only hurts - that i guarantee ….. I think sis needs a dose of your reality, for the record she is was expecting to much at a time - you could not go medically or financially…but yes reconciliation is good - just don't sell your soul for it… do try the tamulosin -seems to help dan some .. they are able to empty completely when they do pee so then there is not the dribble, here and there… and sandy shared advice once about buying mens guards for the penis and then attends and then pay attention that he is wearing darker jeans so that a pee break through is less obvious…and carry baby wipes always….

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It is always scary travelling after reports of plane accidents but I am sure the sad case of the Malaysian Airliner is a one off. Do fly, do enjoy, do reconcile with your sister if you can (but as Nancy said don't sell your soul for it). I had catheters for Ray, then when that no longer worked super absorbent Depends. Where there's a will there's a way.

 

I am amazed at how much support there is in our Blog Community, no sooner is a problem told than all sorts of answers follow. Long may it last.

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Thanks so much Fred! I was hoping there was a pill to cure his ills....now I have some ammunition for the next doctor I talk to. Ray is 67 now, and aside from the incontinence, he also often CAN'T go just before bed. I told his doctor this a year or so ago, and he just said it's normal for older men and it's not cancer (without testing, but I trust him). So there's another clue, glad I have a month to figure it out!

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Debbie, yes I know the catheter is a last resort, at least for the plane ride. I'm just worried about being embarrassed, so at least it's not a life or death thing.

 

Taking it easy this weekend, but next weekend have tickets (bought for Ray's birthday in May) for one of the Grateful Dead members, playing solo at our local theatre. Weekend after, a tour of Brookhaven National Labs nuclear experimentation site with a workshop aimed at older kids, it's only 15 minutes away and....it's free! Ray gets a kick out of anything scientific, so it will be a nice outing. There are four different workshops, one each week, this last one is about atom smashing. Right up Ray's alley: "Tour the Relativistic Heavy Ion Collider, a world-class particle accelerator where physicists recreate the conditions of the universe as it is thought have existed microseconds after the Big Bang. See particle detectors as big as a house! Try to stump a physicist. Be mesmerized by “Phenomenal Physics with Mr. Fish.” Sounds like fun, I'll post my report afterwards ;-)

 

I really should go back to the lawyer after our trip, they were discussing people that had too much money (what a problem, haha) but we have been advised more than once to look into an ARC trust fund which is specifically for handicapped people. Hoping he has some knowledge of that so I can pick his brain, poor guy. Well, he offered!

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Sue, you are right about this group here. I have asked at least three doctors about Ray's problem in the last few weeks and they don't even give me the slightest idea of what to do. OK it's not their specialty but still...my friends here have seen it all. I am making a list of all the suggestions, seems like just when everything is coming along there is always another cog in the wheel! Time to adjust my expectations I guess.

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Nancy, the toilet shower is a godsend. Just a sponge wasn't cutting it. I put down towels over the old plastic liner from our dearly departed king size waterbed and luckily had just painted the bathroom walls with an oil based paint, so not too much of a mess. You should patent that idea!

 

The dark jeans is a great idea too, I don't care if he has to sit a bit before I can get him in the bathroom but everyone knowing what happened would kill me. Time to go stock up on supplies of every type, Ray will look like a mummy but I feel like I can make it work out now. Thanks again, all!!

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Just wanted to say, have a great time on your trip. Enjoy.

 

Strokenet is wonderful, full of caring, knowledge people who are so wise. You guys rock!

 

Yvonne

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It could be his prostate. That is what Larry's problem has been. I hope he can get to a urologist as they are the specialist in that area.

 

Have a good trip. I haven't flown with Larry either but would like to. Let us know how it goes.

 

Julie

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