6 replies to this topic

[GoldenYears]

Morning help is here and I have a little time to post again this morning. It's been a while since I've had time to post on this board.

The past several months have been nightmarish in every way you can think of. Finally things began getting better in October and continues to be better today.

Hubby has been treated at the VA Spinal Unit since the accident in May, with the exception of the night of the accident when he was taken to the County Hospital for 4 days. We learned the VA did no testing and did not even have the records from the County Hospital, and had been treating him pretty much on the fly. I got all his records from both hospitals and made him an appointment with a private specialist.

We learned a piece of bone impaled his spinal cord all the way to center cord at C4/C5. His rating has changed to "Catastrophic". This was quite a blow to all of us.

I suppose every misery you can think of, hit this family. We even had a major flood inside the house that ruined all the flooring, a series of miserable "caregivers" (including an incompetent RN), every caliber and type of emotional outburst from him and us you can imagine, and even his expensive auto turning bed went out. Top that off with grumpy Hubby deciding he wasn't ever leaving the house again and all of us were ready to hide in the woods for a while.

Thankfully, all of that has changed and even Hubby is enjoying his outings and short trips now. We are all still sane and hanging in there. Ah, but we have changed. Indeed we have! How? That's difficult to define, perhaps it's more of an adjustment and tolerance or a true test of what our family is all about. Dunno. We don't throw anyone away in this family.

I've certainly grown to question the fallacy of "independence" as I've seen so many Quads who do so much better with their families. Once we put a halt to the hospital's idea of "independence", Hubby began to bloom and blossom in amazing ways. He is happier, more involved in everything, and even looks forward to his physical therapy.

Our 4 sons gather here once a week to spend good time with PawPaw renewing their old "watching football" and playing guitars, paying his bills on time, driving him on short fun trips, and help with his care during the week.

We also discovered the lack of trust he has in outside caregivers is predicated on fear of hospice and nursing homes -- which we will never under any circumstances allow. He actually thought if he couldn't become the "independent" person the hospital demanded he become that they had the authority to stick him in hospice or a nursing home. Well, they might want a better legal team than we have (and they don't) if they choose to ever initiate that garbage -- and they've been told never to mention that filthy garbage to him again. They won't be told twice.

The VA also has "Respite" which he refuses, and we are fine with that refusal. They do try to push him into it, and had to be told to cease doing that.

We've hired a Physical Therapist well known by the law firm, to come to the house for his therapy, get second opinions from the private specialist, and pretty much have taken the total control of him away from the VA. The VA considers all that as "interference". You bet it is, and he is all the better because of it and we aren't budging either. If he fears something, we are on HIS side -- not theirs.

His overall condition, involving the secondary issues of his disability, is excellent. Our job is maintaining that excellence and that is not always easy. One of our Grand Daughters asked me, "Granny, have you been crying?" Yes, I had been crying. She decided she and I should go shopping for some nice chocolate milk. Ah. Just the thing to chase away the tears, and she is so very "Grand" indeed!

It is my sincerest hope all is well with all of you, and holiday brings much love to you all.

Golden

[jscott92064]

Wow, I can relate to your post!

Happy Holidays to you too!

[Tape]

thanx 4 yor post,i can also relate to it.happy and safe holidays

[tarryn]

Good evening Golden Years
Thank you for your post. I have no knowledge about the institution that you are referring to, but I think that it is so important that people follow their gut feeling about how things should or will work. As a therapist in the field, it is often hard to hand over a patient to a non-medical person, but I believe that it is our duty as professionals to guide and advise families and not to push our own opinions on anyone. I always tell my patients that they and their families WILL cope! Because there really is no choice. But how you cope is different and needs to be supported, not trodden on.
Congrats to you and your family for sticking to your guns.
Have a wonderful Christmas
T

[GoldenYears]

Thanks, all of you, for your kind postings. They matter so much.

Let me say that PawPaw's Physical Therapists have all been the angels from heaven itself. The shove was actually coming from Doctors and student Doctors and even some outside family members. The only reason we had to bring in an outside Physical Therapist to the house was because PawPaw developed a stedfast aversion to what was happening to the extent he simply refused to return to the hospital for his Doctor appointments. This thing got so bad he wouldn't even go to Physical Therapy. The aversion was branching out, going everywhere. That had to stop. There are no words to describe the awfulness of his rage.

The good part in all this is that a remarkable love attachment developed in PawPaw for his Physical Therapist, and we were absolutely overjoyed! Love is an emotion we can deal with! We loved her too! We were beginning to think he had completely lost his capacity to feel love at all for anyone. Ask him, and he will tell you straight out his favorite people are Physical Therapists. His love for her washes over all of us in great kindness, and hopefully she benefits from the love we have for him too.

In truth, I really wish that all Doctors and Nurses were as well trained as Physical Therapists. We have learned they are not.

What the Doctors were doing was attempting to shove him into surgery and to force this issue they put him on a very short leash with Physical Therapy. The Doctors were telling him Physical Therapy wouldn't help him. Baloney. He isn't a candidate for the surgery they want to do, and furthermore no student Doctor is going to do any surgery on him or terrorize him with tales of hospice, nursing homes etc.

For me personally, I was absolutely stunned at the extent of downright lying and wheedling the Doctors were doing, even to the point of actually blaming others for what they themselves were doing. They were creating or attempting to create hard feelings between us and his Therapists, and cast a huge pall over my character and PawPaw's character. His medical records are full of MD comments that I "interfere" with the "care" they want to provide. It made me wonder how many other people they've done this to. Well, it certainly didn't work with me. One MD actually stated PawPaw had "full range of motion in his arms and hands" in those records and called the surgery "clean up sugery". I literally gasped at the nerve, the downright ignorance of that woman daring to make such a statement. We are the kind of people who do seek second opinions with known Specialists with excellent reputations, and thank God we are or else that caliber of intimidation would have eventually caused us to turn PawPaw over to those student Doctors and we may not have had him with us today.

Our PawPaw is an old coot, but he's our old coot and we are going to continue loving him and caring for him, and try always to make the best decisions in his behalf.

To all of you, I hope your lives continue to be blessed as you care for your loved one, and that the stars sparkle brightly just for you.

Golden

[tyvin]

Very nice post; thank you for sharing. Sounds like it's all working out; it certainly was a donkey ride through Hell and back. It's beautiful when it works out and teaches us so much about ourselves and those around us.

Happy holidays to you and your family.

[qbounce]

Golden, if we don't "interfere" with our own care, I'm afraid that no one will properly do it!

Every doctor I've ever met has the right answer . . . . it's up to us to choose which of those is right for US!

I'm glad your old coot is doing well!