Travis and I woke up this morning, after a crazy snow, with our sidewalks TOTALLY clear from someone snow-blowing! If it was one of you that took care of that for us…thank you! Travis sighed a huge sigh of relief and came to tell me, happy as a little school boy! Its the little things that can make such a huge difference! 🙂
Here are the things (marked DONE) we have pretty much taken care of:
- lawn mowing – DONE
- house repairs – DONE
- computer help (I will be tracking someone down for quickbooks this week. Several of you have offered) – DONE
- laundry – DONE
- groceries/errands – DONE
- Our dog, if necessary…this would only be in an emergency. – DONE
- I’m not sure if we could use help on meals/cleaning…I’ll double check!
- I’m still looking for help with the girls’ hair…but I have a couple people I plan to call.
So, thank you for the overwhelming response!
Rebekah left to go bak to DC today, which was hard. I know its so hard for her to be away, not only because she wants to help, but also because she wants to be with all of us. She plans to come back once or twice a month, so pray that she doesn’t get too worn down.
The grief is really settling in for my mom. Its been one week since we were told his condition was terminal, and now being back at the house, different things bring that pain right to the surface…like the loveseat in their bedrom that he bought her for her birthday. He’d remembered her “ooh-ing” over this loveseatwhile they were out shopping, and surprised her with it for her B-Day. For Christmas this past year, my dad gave my mom a bell that she could ring. The rules were that she could ring it as often as she wanted for only ONE day, and each ring meant that he would rub her shoulders! And, its not an uncommon sight at special occasions to see my dad singing to my mom a song in front of all of us. I’m pretty sure we made fun of it when we were in HS, but I give credit to my dad though for having the guts to do that with 3 teenagers in the house!
My dad is just not the same person he was before the bleed and tumor. I think there was damage to some new parts as the tumor grew, because we’re seeing personality changes, mood swings, irritability, anxiety, etc., which all goes hand in hand with frontal lobe damage. But, its hard in the last weeks and months we have with him to experience a husband/dad/grandpa who is such a departure from what made him who he was before! In some ways we have already lost him, and we don’t know whether he will “come back” before we lose him for real. And that makes the grieving even more pronounced and confusing…he’s gone, but he isn’t gone, but he will be gone! Some of you understand this too well. The grief that is experienced when you lose someone so core to who you are is unmeasurable! I know my mom wonders how she is going to make it through this, or if it will ever stop hurting.
I read an article tonight that explained really well the reasons for the things we’re seeing, and I’ll attach it for those interested in reading it.
Larry Hunter is our friend is who organizing the garage sale, which he said is getting a great response! He and his wife will be out of town this week, so you can contact Mike Schulte at firstname.lastname@example.org. I am hoping that is right Mike, because I can’t find the message Larry left me!
Okay, here’s the article! Hope you have a good beginning to your week!
Behavioral and emotional difficulties cannot be separated from the cognitive difficulties that accompany TBI. Ninety-nine times out of 100 when there is a behavioral problem it is tied to a cognitive problem.
- Restlessness and agitationare common problems, particularly earlyin recovery. At that point of recovery, people with TBIhave significant problems withattention. Restlessness is a normal reaction for a person who cannot pay attention or is easily distracted. The same thing applies with reasoning. When an individual cannot reason effectively enough to accomplish a goal, they tend to be restless and thus more agitated.
- Emotional lability and irritability exhibited by the individual with the head injury are frequently described by family. To understand what is happening, think about it in terms of executive (reasoning) skills as a gating mechanism. These gates keep behavior in control. A lot of what the frontal lobes of the brain do is inhibit actions that are not consistent with our goals. They keep you from doing things that you should not do. For example 3 year old children, whose frontal lobes are not fully activated, do whatever comes to mind, sometimes to their detriment.
When you have a significant brain injury that involves the frontal areas, the gating mechanism can be knocked askew such that the person cannot inhibit behavior as well as prior to the injury. The individual is not reasoning effectively and cannot figure out what to do in a situation to solve a problem. To get the attention needed or to generate a response they may get angry or exhibit other inappropriate behavior. The gates that kept behavior in control are knocked askew and things come out that used to be kept in.
- Confabulation is another behavior problem. A patient may tell staff they were at the Talladegaraces last weekend when actually they have been in the hospital for the past 2 months. The person is not lying; instead their memory is playing tricks on them. They are not able to organize their memory and therefore cannot retrieve information accurately. This person may have been to Talladega, but in the distant past. Their organizational process, called “time-tagging”, of their memories is often disrupted and hence their inaccurate recall.
- Diminished insighton the part of people with TBI is a frequent complaint among caregivers. Self-awareness is a very unique skill of adults. As adults we are able to step outside of ourselves and look at our performance and abilities. This involves beingable to process information at a very high level, requiring attention, memory and reasoning abilities. Often a person with severe head injury does not have a very good understandingof their deficits or the impact of those deficits on daily life. They will deny cognitive difficulties that are obvious to others or feel they can engage in activities, such as driving, even while acknowledging significant problems.
- Impulsivity/socially inappropriate behavior results from both diminished reasoning and lack of inhibition. Both have a lot to do with frontal area functioning and the gating mechanism that has already been described. Many families describe the person with the head injury as saying hurtful things and that they are insensitive and blunt. They say things that come into mind without due consideration of the situation. It can be a subtle problem or it can sometimes be severe. The injured person is not able to reason that “If I say this, then something undesirable is going to happen.” The appropriate inhibition is not there.
- Poor initiativecan be confused with depression. Frontal area injury can affect the ability to plan and to organize. This results in a person not initiatingactivity. They will sit quietly and contentedly. If directed to do something, they will do it. But they will not go any further than that. The if/then reasoningskills are not present. In addition, attention problems may prevent the individual with TBI from focusingon something long enough to be able to carry through with a plan.
- Lack of emotional responseis demonstrated by a lack of initiative and a flattened affect. The individual does not smile or show any emotional response to things goingon in the environment. An example is an adult with TBI who was told by his mother that he cannot drive anymore. His reaction was to put his keys on the dresser and walk out without exhibiting any reaction or emotional response. Most adults would react differently. The emotional response is just not there.
- Depression is a common problem for individuals after head injury. The issue is how much of it is organic, related to the brain injury itself, versus reactive to the situation. Fortunately, in either case, the condition is usually responsive to medication and counseling. The danger is that depression can compound the problems that already exist by decreasing activity levels and undermining the expression of skills possessed by the injured person.
- Anxietyoccurs, in part, because of reasoning difficulties. The inability to comprehend a situation or anticipate what is goingto happen leads to anxiety. Three situations in particular seem to generate anxiety among people with TBI: 1- Riding in a vehicle in heavy traffic, 2- Being in crowds and 3- Being around small children.
Okay, gotta sign off! I’m typin with my eyes closed again! That’s my cue! Love you all, Naomi
I’ve had a lot of responses to help for my parents. I haven’t had time to post a list of what is still left, but I will try to do that soon. Thank you for your willingness to be a part of supporting them over this next phase of life. Almost everything should be taken care of, but if you still want your name to be put down in one category, that will always help lessen the load! Thank guys!
Also, its been an extremely difficult week for my mom. My dad is in such a state of emotional distress, but can’t communicate, and it is so painful to watch and not know what to do for him. He seems to track at moments and other moments can’t tell you who people are, even my mom. He gets so severely frustrated by the lack of ability to think clearly, communicate anything at all, and yet I know he is feeling and thinking so much. We think he gets close to panic attacks at times, but he can’t tell us. You just have to listen to his breathing and watch his body language. For him, its like living in an internal prison you can never get out of. We’re unsure on the level of recovery that is even possible from a cognitive standpoint, and so we have lots of conversations with doctors and with each other that need to happen. Our hope right now is for an opportunity that feels good to talk to my dad about the seriousness of his condition, we think he must already have a sense about, and we want to be able to talk to my dad about it all, as things progress, and not feel like we are adding to fear because of things not being said and by him not understanding. SO, please say an extra prayer as we watch and wait for the right time. Also, we have had to make decisions on what care, the amount of care, to what measures to go to when he gets closer to the end and it just makes me sick inside to have to think about all that. My mom is in such pain and there is nothing that can alleviate that. We just all have to walk together through it and face things one step at a time.
We are trying to limit the amount of phone calls my mom has to take, because it is just so painful for her to talk about it all multiple times, but we would greatly covet your prayers for her, for my dad, and for all of us as we keep taking steps. Don’t feel any hesitation to contact Joshua or myself, or that you are going to interfere with things. Josh and I just don’t pick up if its not a good time or we can’t right then. So, you won’t interefere if you want to talk or need to get a hold of us. You can also txt, which is sometimes easier than taking calls.
Anyways, we are meeting as a family in a 1/2 hour and then we have a care meeting with his therapists and doctors. Thank you everone!
These are pics of when My dad’s sister Barb and his mother who we call “Mimi” came to spend some time with us. You’ll see pics of our girls (Travis was not at the U that day), Josh, my mom, Rebekah with Mark and their little James, Barb and Mimi, and also good friends of ours, Christy and Isabelle. This was a day or two after his surgery.
The girls and I finally made it to Mercy Hospital at like 3:00 this afternoon…after what feels like moving a mountain to get out the door. Sometimes I feel quite incompetent for it to require SO much time and energy just to mobilize 3 children! Oh well, we got out the door and that’s what matters!
Larry Hunter, who is organizing the benefit garage sale, wanted me to update his email address and continue passing along that they are looking for donations. They have a location secured to store everything until the sale, with plenty of space, so load them up everyone! 🙂 email@example.com You can also reach him by calling 319 366 6873. His wife’s name is Ann.
I’m getting to spend some time with my dad for the first time in 2-3 days…and mom and siblings. And, it just so happens that he is experiencing a severe headache, and they are paging the doctor. A bad headache is one of the signs to watch for after brain surgery to indicate problems, I’m guessing infection. I had to take a break from writing and now they have already gone ahead with a CT scan, which we are waiting on results for. We should hear soon. But, if its not anything concerning physically, we think there’s a chance it could have been anxiety or a panic attack. Its hard to know what he is feeling when all he can do is sigh, and we’re not sure how much he’s aware of and how he’s interpreting things. Just a hard spot to be.
One thing you can pray for is that my mom is not sleeping well. The doc here is giving her something for sleep, as he said it is really important for her to be rested through this, but he said its quite normal for her to be struggling with sleep as she is trying to take all of this in and make sense of it all.
Its nice to be back in town though so its easier to go back and forth, and we won’t have to either be with him all day or away from him all day!
Okay, well I can’t think anymore…the fam is watching American Idol and I keep getting distracted. Can’t finish a complete thought. Seacrest just made a joke though about Anoop, (who I know nothing about because us mom’s of many kids just don’t get much TV viewing time) and Dad laughed. Nice to see him smile!
Anyone familiar with QuickBooks that might be able to do a little computer input from time to time? We’re also having problems loading it onto my computer. We can’t transfer in the data into the program once its installed. Shoot me an email if you can.