Tag Archives: TBI Caregiver Blog

TBI: End of October, Crabby Day

Out of Order–October 2006.

I’m so damned tired. I’m trying to finish tiling the new shower, no bath in four days except a spit bath. I have T. home now and although he’s marginally better if I turn my back he’s doing something–like dismantling the cd player to turn it off. Wandering outside to pee on my pet clematis. Why couldn’t he just whiz on the grass like a regular guy?

I find myself angry with him when he does things like a stubborn five year old. He: “Go inside I want to lock this door.” Me:”No, I need this back door unlocked so I can get to my studio.” I step through inside door and he locks it with the little button thingie although I showed him it is a double key deadbolt lock. I unlocked it as soon as he moved away and then went and got the key and really locked it. It’s hard to not get aggravated. He just takes so much attention and he demands that we turn the t.v. off and lights off etc. as soon as it gets dark. It’s hard to explain to him that we live here too and he doesn’t get to make all the rules.  Really, television is fine at 8 p.m.

He is being really rude to Torin on the verge of nastiness. Its like with the brain governor off the real Terry is showing through, well not the real Terry but a facet of him that is usually under better control. I don’t like this guy much and I fear by the time he heals I will be so finished with him I’ll want him gone. Then he turns sweet and lost and I see the man I know. I think I’m just beyond exhausted at this point.

The shower has turned into the biggest thing I ever tried to do. It’s like I never get time to quite finish it off with watching T. out of one eye at all times.  I’m hoping we qualify for some home health care under our insurance. Kicker is it has to be an LPN or RN. The folks are coming on Thursday to assess him. I have to have time to work and it is not happening for me now. My boss is wonderful but I’m starting to worry–and Terry doesn’t respond well to some people like S. and H. He just turns into a total ass around them and although H. will happily help we can’t really use her because he can’t stand her.

I’m selfishly happy to have him home though, because now people like his vampiric ex wife  and ex-friends can’t show up to dine on our grief and pain. It really annoyed me that these people who were completely nasty, evil and rude to Terry when he and She split up suddenly are just dying to seem like they give a shit. Give me a break–and his parents just driving up and dropping in on him was hard. They didn’t bother to call me and check on his schedule first. This has been not good, he gets really upset and overwhelmed so no more just dropping in to confuse and upset him. I think Terry was better today because he was not being overstimulated with a bazillion people. He actually remembered for a few minutes that he lived in Olympia and that he crashed his back. He knows something is missing and he is in a lot of pain. Positive signs but hard for me to deal with. My humor is in short supply today.

I’d like to drink or smoke or maybe both. Running down the street screaming might be nice too, but I need to keep my act together. This poor old journal will be hearing me vent and the emails sent to update folks will have the nice parts. Split personality? Bring it on.

 

November TBI 2006: I Can’t do This Anymore

Note from six years later, September 2012. This entry is hard to read for me. The pain still feels so real. I have to remind anyone who reads this, things change, things get better, nothing is static.

Nov. 6th, 2006 | 12:04 am

I think I have reached too far into this unending nightmare. I’m at that magic point where the friends who rushed to man the gates when they heard the terrible news have now evaporated. They have given their all and now they are gone back to their tidy–tidier than mine–lives and I am left so alone and so unable to cope anymore.

Today I was cleaning the garage and rearranging stuff to make room for more stuff. I ran up the garage door and fired up my bike just to hear it run. I sat there on that bike in my pajamas, barefooted and looking out at the pouring rain and it was all I could do to get back off the bike and turn it off.

I want to escape; I want his horrible nightmare to end. I have begun to hate/loathe and despise Terry and his incessant energy sucking drain on me. He cannot be left alone for five seconds. He will be drinking soap or falling down or pulling the clock out of the wall or putting on all the clothes in MY drawers in layers on him which is hilarious but so sad.

He cannot comprehend wait. Today he wanted to go for a walk, I promised him as soon as I got the car unloaded I would put my clothes on and we could go. He has no sense of time or decorum and he came outside in his pajamas with his sweatshirt over his rain coat and wanted to go NOW. He could see I was struggling to unload the car. I asked him to give me just a few minutes and we’d go. I even told him walk to the end of the driveway and COME BACK if you need to move. I looked up and he was gone. I jumped in the car and caught up with him two blocks away, not understanding at all why I was so upset and angry.

He has been impossible today, needy, whining, not able to comprehend anything. I could go into chapter and endless verse but it never changes. I don’t CARE if he is brain damaged. At this point so am I, and there is NO ONE in the fucking universe who can help. I don’t like him, don’t want to be near him or around him and yet I am forced to be kind, gentle, and nurturing nonstop. He goes to bed and gets up every three minutes. Sits up, walks out of the room, you name it.

Today he went into my studio and tried to go into the loft. I blew, I’m ashamed of myself but I absolutely blew sky high. I told him for the 357th time that he had to wait for one of us to help him because he has fallen three times in two days and we want him to have his freedom but he needs to understand he has no sense of balance and no real comprehension of what he is doing. I told him to get out of my studio that it was the last place I had that was my own and that I wanted it that way for my own sanity. I cannot even have a shower alone; I have to shower with him because I can’t leave him for that long. I eat meals by wolfing down leftovers hanging over the sink and listening with one ear. I’m gaining weight because of the way I eat and I hate it..

Corey came to help, bless his heart, but he brought Alex and Terry cannot tolerate barely stimulation of one person let alone a small child. Shayne brings Heather, Penny brings Bob. I need help but I need ONE person and no one understands that and I feel so bad about trying to explain to kind people who want to help. I’m ready to lie down in the rain and just give up.

I’m sure I’ll soldier on tomorrow with all the therapists and the mental health nurses and the doctor appointments and the insurance forms and Terry needing the care of a two year old. I hate my life. I absolutely hate my life. I hate that my husband was so personally irresponsible that he got on a bike at night in the middle of deer country and rode at 70 mph into a deer. I don’t think my marriage is going to survive all this. It’s only four years old and its cracking under the strain. I hate being responsible and not being able to lay down this burden for a single day.

I feel guilty and angry and I hate that I feel guilty about being angry.

TBI:Lost in November

Terry Chapter 6 and 7 Beginning of November

Or Chapter 30 and 40–who knows at this point…. At any rate, I believe I left off at a point where I was just about to explode at the lack of aid and assistance available to brain injured people and their families. These are not regular mental cases. These are physical insults to the brain which leave a wide track of devastation through the brain and the family of the brain. For some peculiar reason the medical community and the mental health community in Washington are unable to figure out how to help brain injured folks beyond in home visits of therapists. The only other alternative seems to be a warehouse–nursing home, Alzheimer’s unit etc. All facilities designed for people that are not expected to recover or be supported in getting better or returning to something approaching normal.

I think the problem lies in the political process that funds care for  TBI people. If you can’t see the injury and buy a band aid or get an operation are you really injured? It doesn’t help both the caregiver and medical communities to deal with such untracked and unchartable territory as the brain either. Remember that old ad, “A brain is a terrible thing to waste?”  Yes, it’s a waste but very few people know how to rescue one.

The shower is almost but not quite finished. We finally had a bath thanks to friends, Gary and his wife Judy, who invited us over to take a shower at their house and treated us like visiting royalty instead of the showerless grubbies we really were. I thought we would never be able to pry Torin out of the tub. Our shower tiling was finally DONE last night at 3:30 a.m. and the shower project from hell is now waiting for the wonderful guys from the city of Lacey to come over and help me hook up the parts that water comes out of. I may get a shower tonight after two weeks and two borrowed showers. I am sick of cat baths in the sink and so are Terry and Torin.

The shower really did turn out nicely but I will never tile anything that big again in my life and do it artistically with mosaic set into it. What was I thinking???? Obviously I wasn’t…but it’s done and if water will come out of it and my shower curtain rod gets put back up I will sit in there until the water heater runs out of hot water. I will probably have to fight off my dear friend Sherry though–she has been staying with me to care for Terry and in the thick of the grouting goo for three days. It’s been frustrating for us both because with Terry watching you have to do what you can when you can. Of course it didn’t help when I didn’t buy enough grout and when I got more I got the wrong color, meaning planning another trip to the store with Terry in tow.

And about our week after the last missive I sent to all–let me just say things got much worse before they got better. This part of the story appears to have a happy middle of the end of the end of the middle. We are by no means at the end of the story. Tuesday (I think?) we had an appointment with Dr P., Terry’s regular general practitioner I wanted his shoulder looked at and his medication looked at and adjusted because he is still not sleeping well from 2-4 a.m., which is about the time I finally make it to bed so I am really tired because I’m back up rubbing his back, his feet, following him around etc.

This bizarre late night wandering and restlessness is not uncommon in brain trauma but it does lead to things like unwatched people drinking the liquid hand soap in the night. After the Tuesday night wandering episode Terry was spitting and cussing and saying the water in the bathroom was terrible, it tasted awful and I assumed he was having another one of those issues with reality not being quite there for him. He came back to bed and was still making the kind of noises anyone would make after ingesting 1/4 cup of soap. We finally got up and I got him a nice fresh glass of water and figured out the soap sipping incident. I helped him rinse his mouth out again and we finally settled down. He did not require a laxative the following day.

I digress, back to Dr. P; we arrived in his office for our appointment in the afternoon and sat around in the waiting room with me falling asleep sitting up until they put us in a room. This room had no windows and it was the size of a large closet. We were left there–for one hour and 15 minutes. I sat on the first of a series of hard plastic chairs that began to appear in my life.  TBI patients are restless anyway and Terry was crawling up the walls after 15 minutes, his back and shoulder were hurting and no doctor in sight. Finally, about the time I was ready to leave and leaking smoke from my ears he blew into the room. Seems he had heard the story from Terry’s and his mutual good friend Rod.  I just filled in some details, explained we needed help to find somewhere that could help Terry and give him a quieter environment. I said we were looking at adult care facilities and he said Terry should be in his facility. He is the medical director at a rehab center here in town. I told him we had applied there and after two days of dithering we were turned down and I was very disappointed. He said, “No problem,” and dashed out to make a phone call, came back and told me Terry will be admitted tomorrow. He was really impressed at Terry’s remarkable progress in just five weeks and actually said in two months they’d get him back to where he was before.  I remarked on how refreshing that was to hear and how grateful we were for his help. I asked if we needed to look at his meds or his shoulder and the doctor told me not to bother, he’d do a complete evaluation the next day. I was walking on air when I left.   Sherry was waiting for us in the car   and I told her what had transpired. She is a retired social worker and she’s been doing legwork to help us find a place for Terry. We were both relieved and happy as we headed home.

The call never came. Around 2 p.m. the next day I called the facility and was handed around until I got passed to a guy named Dan who told me he and Dr P. had decided Terry was not appropriate for their facility. I was devastated and MAD. These people had not had the courtesy to even tell me he was not going to be admitted. I did not get any medical care for Terry and I’ll bet they think they are going to charge me for this mess—I think what this doctor said and did was unforgiveable. Not malpractice perhaps, but arrogant cruelty certainly. Back to square one with poor old Terry. And no looking at his shoulder or his medication either—I called the doctor’s office and was left on hold for ten minutes before I gave up.

We spent the entire next day calling and talking and hunting for a facility or home that would be good for him for a month or two of quiet rest away from the bustle and stress of a family. Terry cannot handle noise or stress or too many people or any kind of over-stimulation. We have a dog, a teenager and two cats. Time keeps moving forward for all of us and I don’t know how to stop the world and make our situation work for Terry.  I am trying to buy time. I am told again and again that it is time that is needed, time for him to recover, rest and recuperate. I still think he desperately needs his therapy too, and I want to find someplace that is not a warehouse for the wounded.

No one is prepared for brain trauma walkers who might just stroll away. One place in Centralia would take him and it sounded good so we visited it that evening. It was a cousin to the HP Lovecraft Motel –only this had to be the Barbara Cartland Nursing Home. For those not in the know, Barbara Cartland was an ancient lady who wrote romance novels that introduced the genre to America.  This place was really clean, smelled great and just about killed my fashionista son on impact. The walls were painted a mélange of colors including mustard yellow, and an indescribable green that is close to the color of copper ore–turquoise but not really, just overpowering next to the yellow. The dining area and television lounge area were pureed flamingo pink and the halls were a paler shade of the same. Every surface had heartwarming Victorian trinkets on it, flowers, feathers, more silk flowers and sappy statuary, really bad art and wallpaper borders completed the picture.

I know the little old ladies wheeling around hunched over in their chairs probably loved it and it made them feel very comfortable, but it felt like I had been locked in my grandma’s bedroom in 1976 and never let out. I was reading their calendar posted in the hall while we waited for the owner to give us a “tour” and I thought it was probably the wrong place when I saw the calendar set aside time everyday for “group reminiscing”.  Can you picture Terry in the midst of 17 frail little old ladies and a sprinkling of even older gentlemen talking about the old days? They also have kickball as an activity….quoi? I figured it had to be a sturdy game of wheelchair football and was trying to imagine picking the teams.

Terry is a wanderer at night and I didn’t think the tiny toothless female aide (not aged—toothless more like descendant from a Virginia mountain woman) could handle him when he strolled into Mavis Fenster’s room at 2:00 a.m. trying to find the bathroom and peed in her clothes hamper. He is getting better but still has issues with relocating himself in space and time and he’s usually pretty bare when he sleeps. The whole situation was a heart attack waiting to happen so we excused ourselves and went home.

Terry had gone with us because we wanted to gauge his reaction to the place. He made us talk in the car about being out of our “safe zone” before we went in to examine the place. Although that made no sense, in translation it meant he was not happy to be there.

We got home and started to go into the house when Terry kissed me good bye and asked me to give him the keys to the car because he had to go home. I tried to explain he was home but he was adamant about going home. We stood on the deck and talked and he said he “Lived in Tacoma with his ex wife” and to stop playing around. Of course he thought ten minutes later he lived in Seattle with some firefighters and the address was two blocks over, but he couldn’t remember the street name. While he was distracted Sherry and Torin scooted around and padlocked the front and back gates, which we had had the foresight to prepare for just such an event. He was mighty upset that he couldn’t get out of the yard and walk home to Lake Louise. He tried to leave by both gates. He started to climb over the front gate with a cast on his arm and that’s when I called the police. I finally coaxed him back inside because he said he was cold. I asked him whose clothes were in the closet and he said his but he had just brought them over. He lay on the bed and refused to speak to me because I was holding him hostage. That’s about when Officer Cook showed up. What a great guy. He talked to Terry and they discussed mutual acquaintances in the fire department and Terry said he would go with Officer Cook to the hospital so he could sleep. They left in the officer’s car; I burst into tears and had half a beer.

Of course that’s when the phone rang and it was Officer Cook. I was being called to the hospital. I suppose as a sort of translator? Again the curtained cubicle, Terry left abandoned for the most part. The ER doc was short, (literally) sharp and to the point and he was gone from our cubicle within a few minutes. They did a CT scan and Terry’s head appeared to be medically normal. After he escaped in his little gown and scooted down the hall with his buttocks twinkling, a nurse caught him and brought him back. He was dosed with Percocet and Attavan and left pacing the cubicle and in a sweat rocking and moaning. Personally? I think he was in the middle of a huge panic attack. Percocet is not what a TBI needs and he was very distressed for more than two hours.

At 12:30 a.m. a nurse came and escorted us down the hall to the psych ward. That was fun. I spent the night in the psych unit. I always wondered what that was like and now I know. They put Terry and me in a room with two overhead lights and a window-like portal in the wall. The furniture was a wooden box with places for restraints on the side. That was the bed and the mattress was about as thick and comfortable as a sweat sock. Terry referred to the one thin blanket as a tablecloth. I left him for a few minutes to do the intake paperwork and I had some vague hopes that mental health workers might be able to us find a place for him as I had been trying to get capable help for nine days with no luck.

After filling out a batch of paperwork, I was escorted back to the unit, noticing no doorknob on the inside, and given a hard plastic pink chair to sleep in. Terry was both miserable and wound up. He couldn’t sleep it was too bright. I gave him my sunglasses no one had taken away my purse. Then he couldn’t sleep because his back hurt and he had a headache. I discovered that a really strong peppermint Chap Stick makes great emergency back liniment for a rubdown. Afterwards you can wave your hands under the person’s nose for their headache, dispensing peppermint fumes (MacGyver eat your heart out).

We settled back until 3:30 a.m. when the psych worker came to get me and tell me I could leave. The weird thing about the whole experience is how depressingly ordinary it was. I have a kink in my back roughly the size of Cleveland from the plastic chairs and tiling all hours of the last few nights. Terry was sound asleep when I left him in the loony bin.

I got home at 4 a.m. and up at 6 a.m. to get Torin to his morning club meeting at school. I drove home and picked up the phone. Penny, Terry’s sister had given me the name and number of one of her college faculty who specializes in helping TBIs and he was willing to talk to me. I called him and he set up a meeting–in Grapeview–90 minutes later. I rousted Sherry out, gave her a cup of coffee and we headed to Grapeview to meet Dr. Joseph Moisan.

He is now my official hero. He is a private case manager with credentials and a pedigree which is also the size of Cleveland, the suburbs and the surrounding county. His son was a TBI when he was only two and a half years old. Dr. Moisan says his son taught him everything he knows–and now he puts that to good use helping others. We were in his office for almost 8 hours and his wife Judy made us mercy tuna fish sandwiches in the middle of all of it. He cut through more paperwork and crap in that one day than I have been able to do in all the days since the accident.

We are now on the event horizon for a social security disability hearing next week. We got the approval for a neuropsychological consultation which is necessary to let the doctors know where in Terry’s brain the injury took place, possibly how severe it was and how he is recovering and can recover. Again–the brain is a marvelous thing and we are all dancing in the dark here. Well, the neuropsych guy is dancing in a candle lit room but it’s still not 100% clear when you are dealing with a brain. Dr. Moisan knows all the facilities in the country and he has found the best one closest to us in Bakersfield, CA. This place holds promise for bringing Terry back and I am holding on to the belief that Dr M. can help make this happen for us. I watched him go through insurance companies’ hurdles like an Olympian athlete. It was a $1000 to retain the doctor’s services but worth it at twice the price because he knows his stuff and their stuff and how to make them all do the other stuff.

Sherry is going home to Oklahoma next week; I think we wore her out. My brother is flying in Friday night to be my new overnight helper for two more weeks and I think if we are not seeing daylight yet we may at least be seeing the nightlight enough to read the clock.

I’m off to fetch Terry home from his vacation in the psych unit, more later.

Terrible T.-the Unlaundered Version

Oct. 21st, 2006 |

The email update list who wants to know how Terry is doing gets the sanitized version; my journal gets the director’s cut–the down and dirty ugly parts of brain injury. Frontal lobe injuries ruin the ability to control impulse, organize, make any kind of judgment or decision and they release all the anger usually kept under control.

T. cannot behave appropriately–as in identify the toilet, not eat a whole sausage patty in one bite–or not reach into a pot of boiling water to get at the rice in the pot. He has to be watched every second and he hates it on some level. I’m exhausted and scared and just stunned by the consequences of his decision to ride his bike at night.

No one could have predicted it, but I seem to be the one paying the piper and I am starting to wear out and be really angry at the world of insurance and the medical community. I’m also angry with T. and frustrated because he cannot understand any of this so I stuff it down and don’t take it out on him.

They scrape someone off the street, save their lives and dump them back into the world whether they are ready or not. With traumatic brain injury, TBI, as the cognoscenti call it, they are seldom ready. The TBI world is populated by an infinite variety of symptoms, causes and effects. Each person is different in their reaction to treatment, medication, and general recovery rate and degree of recovery. No one has any answers and they gently skirt the truth–which is:
a)we don’t have a freaking clue
b)frontal lobe injuries are the worst with the longest and lowest recovery

There is nothing in place to support the people stuck with trying to cope with what amounts to a giant brain injured two year old. Everyone has an opinion but I don’t see anyone here at 2:00 a.m. when I’m trying to talk him in off a ledge and getting nowhere. Fortunately, we have no ledges in reality; but last night he did go outside in the rain barefoot and mostly naked. The yard is fenced and we put locks on the gates or the cops would be here by now.

Although I am the only caregiver–another word I have come to hate–I still have to work to keep a roof over our heads and be able to pay the bills. How can I do this when I watch him all day and all night? Even if I had day help, he doesn’t rest at night so when am I supposed to rest? I am just beat today,napping on tenterhooks and able to flame to full consciousness in a split second when he sits up and gets ready to move. I try to just follow him and not intercede unless he’s doing something dangerous that could result in harm.

I really don’t think he will ever return to work. I am hoping that his care will be paid for and that he can stay home. When he does well he does really well, just not for very long. What is happening now is what I was scared of all along. He does not remember any one from the last two months– nor does he even know what town he is in most of the time. His health is improving and we are going to the doctor next week to ask about his meds and show the doctor I do need help. I will ask the doctor how on earth we can change any of this behavior.

The therapists finally all showed up Friday after I had a fit because they hadn’t even called. They seem to have some ideas and are going to work with him. This will be good I think. I keep expecting the magic bullet. The thing that makes it click. I want to see him realize with horror that he crashed his bike. Not just take it in and keep going, like I told him we were having pizza for dinner. That will probably never happen.

I got hold of the disability board yesterday and asked them what they needed to give me what I need. I have to present all this stuff as medically necessary and come up with costs etc,. to present to them–and watch Terry at the same time. SSN has to to get filed for, but that’s an exercise in stupidity as he doesn’t have social security because he was a fire fighter and didn’t pay into it. I really cannot afford to hire a caregiver right now–especially one that I have to come in and intercede for every ten minutes. Heather is willing but she cannot handle him in any way. he doesn’t listen or respond to her so I cannot use her help. I may wind up having to hire a big strong guy to hang out with him and figure out how to share nights.

I want to explore adult homes for him, might be the best option at present. I need to document the true weirdnesses but right this minute I think I’m too tired…..