Hello everyone!! First, let me say thank you to everyone who continues to pray for us all. Second, I am sorry that we haven't written sooner then now--I have heard from many of you about how much you miss the daily e-mail. We are touched deeply by this. Soooo.....As promised, here is one of our periodic updates on mom.
Mom arrived home exactly a week ago! She was full of joy. That's the only way I can describe her reaction to being home. I expected alot of tears from her...but there were few, if any. She was mostly joyful. Remember, to her, she wasn't gone 18 months...her head injury prevents her from remembering the worst of what she's been through, including how long she was away from home.
OK...so what is it like to have mom back home? It's wonderful. Magnificent. Awesome. But...it is also alot of work. Much more work than you could know. Mom is now in a wheelchair (hopefully, not forever) for now. Her skill abilities are inconsistent too. This is due to her head injury. For example, some days, she can just stand up while holding onto the bar on the wall in the bathroom with one hand!! Ta da!! While other days, she can't stand at all and so, on these types of days, it takes 3 of us to lift her to a standing position in order to transfer from the wheelchair to another seat---alternate chair, bed, toilet... It's hard to gather 2 or 3 of us when mom needs us to be there sometimes.
The cause of her skill inconsistency is twofold. Sometimes the two reasons are combined at the same time, and sometimes they are separate reasons that happen separately. Sometimes, mom is unable to stand or perform a task (though usually it is in relation to standing) because she is unsure and frightened that she will fall. At these times, the reason for the fear is a lack of trust in us and our ability to help her. The solution to this problem---she'll get used to us helping her and gain confidence with time.
Sometimes, mom is unable to stand or perform a task because her brain injury prevents her from remembering what to do---even though she has completed the task (standing let's say) a thousand times before in exactly the same way we are asking her to do it now. This is because the brain injury prevents her from both remembering what to do, and also from generalizing the skill to a new situation. It works like this: Change the location or the variety of the tools used (like the type of bar to hold onto...or even the color of the bar...) and the task becomes a whole new, never experienced before type of situation. In the field of special education, we see this type of occurrence with children who have mental retardation (NO!! I'm not saying mom has mental retardation!! She doesn't!! It's just the clearest way to understand the situation). OK. You have a child with MR and you teach the child to count to 3 by counting small, red, plastic bears, let's say. You work for weeks using the exact same 3 red bears, and finally, the child knows how to count to 3!! You just give the child the bears and viola!! He counts to 3. But now, one day, you give the child 3 blue bears or maybe 3 red balls and you ask the child to count --- but suddenly, the skill is gone. The child can't count anymore--even though he's counted to 3 using those red bears for weeks or months!! Here's why the skill disappeared. For a typically developing child who's brain is intact, counting involves maybe one center of the brain. But, for the child with the compromised brain (MR), the act of counting to 3 involved a broader spectrum of the brain---many parts of the brain...not just one area. So, when you change one of the variables in the act of counting, like the color of the objects being counted, the skill is perceived as something unknown. There's no familiarity attached to it that triggers the memory of what to do. OK...anyway, that's what happens to mom sometimes. The solution to this problem---mom will make new associative connections in her home surroundings and eventually, the "things of home" like the color and type of bar that is in her bathroom vs. the one in the facility, will become familiar and replace the memory of what tools she used in the facility. She may also learn how to generalize skills again as her brain becomes whole and fully functioning again. (long paragraph...sorry Nance! didn't know where to break it up!!hahaha!)
The last reason that mom can't always perform skills she had in the facility involves her own confidence level and emotions. She sometimes says, "Oh, I can't do that!" and gets angry. Other times, she says, "I AM DOING THAT!!" but she isn't (confusion in her brain).
Sometimes the reason that she can't perform is a combination of any or all of these factors!! BUT....the main point is that WE WILL HELP HER GET THROUGH THIS...................!
OK...the aide saga. We get 2 aides per week---one on the weekend (Saturday and Sunday) and one during the week (Monday through Friday). The weekend aide is really nice. It turns out that this aide has worked in a local convent with some of the nuns who Claudia and I work with at the college we teach in now! Small world. I like this aide. I think mom likes this aide too.
The weekday aide changed 3 times in less than 48 hours. We started with one aide on Monday morning, then had another aide Monday night, and then another aide Tuesday morning. The first aide appeared to have transportation issues. The second aide was a substitute. The third aide appears to be consistent all week now.
It took the aides some time to acclimate to mom and dad's house and to mom. Of course, these poor people had to also deal with the bombardment of all of us there as well--telling them what to do and how to do it. We have come so far, we don't want to go backwards now. Claudia, ever the behaviorist on the go (God bless her), already made several laminated charts for mom, dad and the aide. She and I came up with the idea to make a chart for breakfast---what to make and how to make it (following what we did in the facility). It's a high fiber breakfast and one that is full of protein as well. Claudia also made a chart for the bathroom wall---I thought that a visual aid would help mom, dad and the aide---it involves pictures of a bar with 2 hands holding onto it, then a person's feet (where and how to place them on the floor for optimal standing), then a person standing.... We also made a chart that records what mom ate, bathroom events, and her 2 medications (not serious ones). We put skid tape on the floor in front of the shower, the toilet and mom's bedside so she doesn't slide when she tries to stand.
People ask what it's like to have mom home. To me, it is very, very similar to having a new baby in the house. There are suddenly items there that weren't before. There is the need for a schedule--when to eat (mom hadn't eaten breakfast until 11:00 a.m. on several days!! haha! neither did we!!), what to eat, how to prepare it, how much to eat... Schedules for getting ready for bed or a bath or the toilet.... I'm not saying mom is like a baby--she's not!! Far from it!! But...there are many parallels between the two. Who can be there to do what and how often and when.... I have confidence though, that it will all get worked out, and rather quickly too.
Services for mom....like OT, PT, Speech and visits from a nurse. Right now, mom has seen 2 different nurses since Saturday. One on Saturday and one on Wednesday. A nurse comes once or twice a week to check vital signs etc. Nothing major. The nurse checks on the overall health condition. The nurse told us that the supplies we need for mom like the bandages for the stoma on her neck (which Claudia initially bought and it cost $10 for 5 bandages!!!YIKES!!) and the Depends she wears in case of bathroom accidents (she doesn't have any during the day unless we can't help her fast enough to get to the toilet...or at night sometimes) are all covered by insurance. YAHOO!!
The OT came and said mom qualifies for OT. The OT did an evaluation this week on Tuesday. Then, the OT said mom will get OT 3 times a week for an hour for 2 weeks, then 2 times a week for 2 weeks, then 1 time a week for 2 weeks. Then I think there will be another re-evaluation.
The PT came to evaluate mom and told dad that PT will be 2 times a week for 4 weeks and, if no improvement, no more PT. We haven't seen the Speech Therapist yet.
I think in some ways, for some of us in the family (dad, for one), we are now feeling the aftershock of what we've been through finally. It's like, "But mom's home and it's over now, so why am I feeling overwhelmed and crying so much?" It's like we have reached a place, for now, where maybe it is finally safe enough to cry and let it out. It's like, now the reality of what we almost lost (not that we ever forgot it for a minute in the facility) is smacking us square in the face... and it's scary. When mom was in the facility, it stunk, for sure. It was awful but we buckled down and put our noses to the grindstone and did what we needed to do in order to help her---and there wasn't much time to experience all that we felt underneath the surface. Now...there is time to feel. Now...there is time to exhale. Now...there is time to heal....but for now. Life goes on, doesn't it? There will, unfortunately, be more downs with the ups.
Keep dad in prayer please. He is doing so much. So much. I worry about him. He is dealing with alot. Many changes. He isn't as free to "run around" the way he used to either. Dad is a gallivanter!! He likes to do things and go places and run errands. That's dad. He hasn't been to daily Mass all week, I think. That's a part of his life so far. So just pray that God will give dad peace in all dad does and in all the ways that his life has changed. Dad's "girl" (as he lovingly refers to mom) is home. My prayer is that dad can relax into a new routine and enjoy his time with mom in new and renewed ways.
Mom needs prayer too. She is now realizing all that she can't do. She cries about it at times as well, which is healing and good. Pray that mom continues to get better and stronger. Pray that she, too, accepts where she is now and learns to relax in it and enjoy every second of her life...even as it is. Overall, mom is sharp in her thinking....except when she gets tired, which is natural and normal. She can have conversations. She and dad did some "work" yesterday...they completed some Life Skill worksheets that Claudia left for her to do.
BUT!!!!! MOM IS HOME!!! YIPPEEEEEEEE!!!!!! Her friends come to see her, Maureen, Flo, and Florence. Anthony and Sammy come to snuggle with her at night. So does Claudia. John comes to see her.... Anthony and Claudia are there faithfully each day to help in the bathroom and transfers to the wheelchair or bed. Mom is a 2 person assist which means that, even the aide is not allowed to transfer her from one place to another alone. Mom was pretty much a 1 person assist in the facility--but she'll get back there and even better (alone!!!) I am sure some day soon. Con and the kids visit mom throughout the day on the weekend and at night. Jo Ann came to be with mom on Monday while dad and I went to postpone the Medicaid hearing we are working on (the agency we used to file the paperwork appears to have filed too late and now we may owe money-----we don't really owe it though so we have to prove that at the hearing). Anthony continues to work on mom's legs and do PT with her. He could get a job doing this---he's great at it! He does many of the exercises that Barry showed him how to do. Terry is with mom each night too. Claudia and I are busy setting up the house, going through the boxes from the facility, coordinating services, appointments, charts, schedules...figuring out a cognitive therapy routine and organizing her tools and supplies to that end... But... Mom is home....and it is just magnificently glorious!!!!!!!
Will continue to keep you all posted. Love and prayers to and for you all!!! xxxooo
"But if we live in the light in the same way that God is in the light, we have a relationship with each other." 1 John 1:7
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