Danny's first month at home was full of confusion, a fair amount of agitation, as well as comic relief. We had a busy schedule... Mondays, Wednesdays and Fridays an hour away to therapies in Allentown. Danny could be stubborn, funny, annoying, nasty. He ranged from tired to energetic. His confusion, especially at first, border lined on out and out insane. And agitation was an issue that arose any time he was confined too long in a car, or was exposed to too much noise or people. Physically, he had a quite wobbly gait and incontinence issues, but aside from his neck brace and continued pain in his injured areas, he was progressing pretty well. He did however have a completely and distinctively different "look" over all.
I made the following entries on my Facebook and Dailystrength journals near the end of February. I'll cover details of our individual issues later as I go...
Sunday, February 27, 2011 | A Frustrating story
Sunday, February 27, 2011 | A Frustrating story
I am just feeling alot of frustration and feeling kinda weak when it comes to the daily things I am going through since Danny has come home. I am sooooo grateful he is alive, has recovered physically, could come home. But I know I can vent here in my journal abt the difficulties happening, and everyone will understand. Some family or friends maybe wouldnt. Perhaps they would think I am regretting bringing Danny home. IM NOT! I do though feel frustrated, and I know its normal, and you guys understand. It is just so much more difficult than i ever imagined. As the days wear on and each day just seems to be the same things over and over it feels so overwhelming at most times.
He is most himself when we are alone up in bed and he almost seems more lucid and clear. When we are downstairs with the rest of the family he gets agitated and more confused. I am lucky to have the help and releif supervision of my daughter and her bf who live here, but by the same token, the house is too noisy as they have a 4yr old, plus my 9yr old, and then there is also my 19yr old son and his gf who is there alot. But without the help of those ppl I would not be able to return to any work either. My financial situation is in an awful way and 3 nights a week im back to work now.
Luckily Danny sleeps thru the night now, which he didnt in the hospital. Im hoping the confusion with his ADLs gets better at least. That is sometimes the worst to deal with. He gets angry when I check on him in the bathroom, but left alone he will stay there for over an hour and spray toiletries etc all around and do all sorts of things, like a small child would. He has thrown objects down the toilet numerous times etc. He insists on concocting strange things in the kitchen and then trying to eat them. Again, when I try to redirect him he gets VERY mad. As long as its not electrical appliances or the stove I just let him be. He goes on and on abt names of ppl from childhood and things he thinks happened just yesterday. Anger toward me if I dont remember.
He has outpatient rehab 3 days a week and I hope that helps, but his short term memory is gone. Sometimes I doubt he knows me and maybe says he does only because he believes me that we have already lived together for 2 yrs prior to the accident. Trips in the car are better. At least he isnt trying to open the door while we are moving anymore, but again, the constant going on and on abt things and getting angry, and the constant playing with the radio, the heat, trying to take things apart in the car while im driving. Its all so overwhelming.
Getting his meds in is another frustration. Unless I tell him 4 times a day that the pills contain really good pain pills, he wont take them. I had to buy a safe to keep them in cuz he got into them after the first few days and took a bunch, even tho I had them well hidden. And he refuses to bathe and let me wash his hair. Its like a warzone to get him in. This is a guy with severe OCD who used to primp all the time with his cleanliness and grooming. Now he doesnt care at all.
I do mourn for the guy who is gone. I can barely stand to look at pictures from before and I have come to terms to an extent with the fact that that man is gone. He TOO could be hard to deal with what with OCD, ADHD and bi-polar disorder. And I guess all that is magnified now. He is twice as quick to anger or get frustrated, and still spends copious amts of time at things, only its strange things like playing in the bathroom with creams etc. And in public its difficult as well. In a restaurant last week where we stopped for him to move his bowels in an emergency, he was in the bathroom almost an hour and when I peeked in the door he was standing with his pants around his ankles, poop all over and had the toilet filled with paper. I had to explain before we left to the manager.
I knew things would be hard....I am well-educated on all the brain injury stuff....I made SURE I was. But LIVING it is quite different than reading abt it or hearing someone else explain. I just hope that it gets better and I can remain strong. I feel very weak at times, and that scares the hell outta me. I have survived sexual abuse in childhood and a long marriage to an alcoholic, and this far stretches my emotions and mental stability further than those things did. I need encouragement and prayers as I face this....Thanx....Kath
update...how I feel
Saturday, March 5, 2011 | An Inspiring story
Saturday, March 5, 2011 | An Inspiring story
This is from my journal on Facebook..... Update on Danny
by Kathleen Quinn-Farber on Friday, March 4, 2011 at 3:28am
So Danny's been home one month tomorrow. It is all i imagined, plus more than I COULD have imagined! Not easy at all. I knew it would be hard, but sometimes it's just crazy. I need to remember to take time out for myself. Trouble is finding that time. I'm back to work 3 nights a week. Thats good. A regular pay again will help get us back on track financially a little. My little car is somehow holding up all the trips back n forth to Allntwn and Beth. I dont know how, but it is so far.
Danny is doing good, but his memory loss and confusion is PROFOUND! He seems to be stuck back in Jr high and highschool. He talks abt being in school, as tho he was just there today. He says all sorts of names, who I later only find out from his family are real ppl he has known from the past. He calls therapy "going to school". He talks in circles, abt silly impossible things. He concocts weird recipies and tries to drink or eat them, and he cant be left to his own devices in the bathroom for long or he gets into things just like a toddler would. His self-care/grooming is a problem. Its a task getting him into the tub or getting his hair washed. Getting him up, ready and out the door for therapy and appts is almost impossible sometimes. He seems most lucid at night when we finally get to bed. Sometimes he cries because of all I do for him...HAVE to do because he cant. He wants to be the one who "does" for me, and its upsetting to him. Danny came into my life and was the first guy to ever take care of ME, even tho his financial resources were small, he was unselfish with his time and money, and bought things only for Nick and I, and he was devoted to Nick and his homework, activities etc. Now that man is gone. I feel like I need to grieve a dead person. He wont be returning. Danny will never be the same. After this long road that may never end, I still will never know what the end result will be or how much he will progress. It scares me.
I had a casual acquaintance suggest to me that I feel I "owe" Danny caring for his needs now, and that his injuries are causing me to feel as tho I must love and help him. This made me angry, as I couldnt get her to see that I loved Danny with all my heart BEFORE all this happened....but yet there is a grain of truth in what she said. I DO feel I must care for him, but not cuz I HAVE to. I was prepared to fight tooth n nail to see that he returns home to me n Nick. He made such a difference in our lives, and I will never desert him no matter how difficult our journey becomes. Its strange....I was married 10yrs and together with my ex for 18 yrs, and never felt what I feel for Danny. When I look at him, I see a perfect human being, an angel. I know that sounds peculiar. I cant help it. Maybe this is what love is all about. I never knew before. I have nothing to compare it to.
Medically speaking, Danny's ribs and scapula are healed. He needs lots of therapy to regain range of motion, as well as balance with walking etc. He needs a cat scan of the neck to see how that has healed. Cognitively he is bad off. It could take years to even get back the greater part of that. Through the ordeal he went from an 185lb/built like a running back physique, to 150lbs and thin and fragile looking. His appetite hasnt been good...not sure if its cuz of all the meds he's on or what. He is still the most handsome, sexiest man on earth to me, and he loves hearing that. And he loves telling me the same (but that im a woman of course...lol) Age doesnt matter to us, and matters even less now than it once did as far as bothering us what others thought. We were brought into eachothers lives for a reason. I'm so sure of that now.
I continue to be grateful for his life being spared. Having him home means so much to me. The endless schedule of therapies 3x/wk and all the drs and appts and so forth...well, we will get thru it. There are insurmountable piles of paperwork all the time, organizing of appts and work and care and family-life. I know it will get better. And those moments I talked abt when he is most clear, and we are alone in bed, and we talk, and maybe one of cries and lets out our pain or frustration, or we laugh our asses off at his silly talk...its worth it all to be able to go to sleep with my head on his chest, and have him hold me close just like we always have. That heart in that chest, is the same beating heart I hear that was always there. No matter how or in what ways he changes, he is still Danny. And I will continue to celebrate who he is to me. He is still my knight in shining armor...still my superman...and I guess I just have to be his superwoman for awhile for as long as he needs me to be. That is my prayer.
Thankyou to all my friends here, and family who keep us in their prayers......