Patrick was not getting any sleep and they wanted to keep him a week longer than expected. I was so frustrated, he was not sleeping and they would have him do all this therapy, then he would sleep for a few hours and be up all night. The brain needs sleep in order to heal. So I had the nurses keep a sleeping log when I was not there so I could show the doctors he was not sleeping. Now Patrick sleeps 10-12 hours every night and has a 1-2 hour nap everyday.
I had to stay with Patrick for two days in the Transition apartment before he was able to come home to make sure I could handle everything. This was the first time Patrick and I have been alone without kids and it was in the hospital (too funny). We did great in the transition apartment and he got the okay to come home. He wanted to come home so bad. When I was not at the hospital with him, he would roam the halls with his aid looking for me.
We had to take him out in public with the therapist the last day of the transition apartment to make sure he did okay in a car and out in public. He did great.
The ride home went smoothly, but once at home, I could not leave Patrick alone for the first few weeks. It was a huge transition for him to come home, he didn't remember home or even what city it was in. He built our home and he does not remember it. I was so hoping he would remember everything once we got home. However, the surroundings were familiar to him.
Patrick came home November 14, 2014. Just in time for the Holidays (that he does not remember or know what any holidays are). Patrick had to relearn just about everything. He does not remember anything visually before his heart attack. However he has had a few memory recalls since, very few but they are coming back. He remembers emotions and sounds. So if you see him don't be afraid to say hello, he will probably recognize you by your voice.
I had a difficult time being out in public with him and running into people at first, I didn't know what to do or say. How do you explain a brain injury and then when you do, they don't understand. It is okay, the doctors don't understand or know the outcome either. The brain just needs time to heal.
We both have gotten better about dealing with it now, Patrick has gotten so much better being out and about. When he first got home, we lived in a very quiet and non stimulating environment. Things like the washing machine and dishwasher were stimulating or the dog barking in the next neighborhood. He heard everything. It is like having a newborn in an adult body that can communicate with you. Most everything was "Fine". Any question you asked Patrick, he would answer, "Fine".
Patrick was unable to read when he got home, but he was able to write and spell. The brain is so interesting.
The most important thing was to get Patrick on a routine, which was extremely helpful. As he relearns, he is able to do things on his own after doing it several times.For Patrick's Daily Routine {Click Here}
The days went by so fast, he had Occupational, Speech and Physical Therapy daily. It was a lot to get him to Salt Lake City (50 miles away). The drive was too stimulating. We were lucky enough when therapy ran out on our insurance to get a grant to continue Speech and Occupational therapy. We are now able to do all three from home, which has been amazing.
When Patrick first got home, he thought he was 22 years old and became very depressed when he found out he was 43 years old. Then he kept calling himself stupid for everything he did. It was a wild roller coaster ride for the first few months. I would forget that he didn't know what anything was visually and I tried to remember and teach him what things were. He would get frustrated if he didn't know what I was talking about. It has gotten better but he is still learning.
I gave him a Dove Chocolate a couple of weeks after being home and I just assumed that he knew what to do with it, so I turned around after I handed it to him and I read mine, then threw it away. I turned back to him and asked him, what did his say? (Dove Chocolates have little sayings in the wrappers). He pressed his lips together and grinned. I put my hand up and said to him, spit it out. Yup he had put the whole chocolate in his mouth, wrapper and all. We laughed and still laugh about that today.
He had only been home two weeks and we were getting a visit from his sisters that live in New Hampshire. I was happy to have family around as my dad had left as soon as Patrick got out of the ICU. I had great neighbors and friends, but it is still nice to have family close and around. Especially in this situation.
It was months before going to the store and still today I try to avoid it with him. I would take him to drop the kids off at school and he would get upset at all of the kids riding their bikes and scooters without helmets and he would get agitated, so I quit taking him with me to drop the kids off and timed it where it was his nap time when I would go pick them up from school. Today he does much better in public and when people are not wearing helmets.
It was a balance keeping it all together and still is. I stay positive and things improved daily. It is hard, I did just want to break down. But I couldn't I had 5 people fully depending on me. I will do my best and preserver.
The first few weeks we worked on getting Patrick on a routine, which really helped. Then we awaited the visit from his sisters. I was not going to do anything for Thanksgiving when I realized that this would be Patrick's first Thanksgiving that he would remember so we had to go all out.
Challenges I faced; were making decisions on my own, the children and how they were dealing with it all, all the canned lights in the hallway were out, all the lights in the bedroom were out, I cried over split milk, the kitchen sink breaking and flooding the kitchen floor over and over. Receiving help, trying to bring some normal back into our lives. Remembering to teach Patrick. The challenges seemed so big at the time. Now that months have gone by, I know that this is happening for a reason and I have learned so much. Most of all I have learned how grateful I am for Patrick and all that he used to do for me and the kids.
Coming up next the Twisted Sisters Visit and Thanksgiving.
Kollette Chambers
Recommend Reads - Living with Brain Injury a Guide for patients and families and Mind Storm.
