I began the day with mom this morning. She was awake and had just begun to eat her breakfast. Again she asked, “Where’s Claudia?” as I greeted her! Mom looked over at the door to her closet and began studying the pictures on the door. We have headshots of each of our family members along with the person’s name under it. Mom said that she likes to look at our pictures and that she plays games with them---she guesses everyone’s middle names, or counts how many girls there are or how many boys there are… Then she asked for Claudia again and asked where she is. I told her Claudia has bronchitis and she said, “T-I-S. TIS” I guess I didn’t pronounce it correctly!! Hahaha!! (I did!!)
We did the calendar next. Mom knew the month but confused the day, date, and said it was 20-01 instead of 20-11. She has been saying that a lot the last few weeks—20-01. She did all this as she ate breakfast. She would no sooner say the date and take a spoonful of cereal and then she’d ask again, “What’s today’s date?” and do it all over again.
She complained about having to drink prune juice. I told her she had to drink it and she mimicked me again and then said, “NO I don’t have to!!” Then she seemed out of breath and when I asked why she said, “Because you aggravate me!! You keep making me drink things I don’t want to drink.” She asked for Claudia again!!!
When I told mom I was leaving for work, she began to sob and say, “Oh no!! No one’s going to be here with me? Where’s dad?” I would calm her and then she’d cry again and say, “Leave me alone. I just need to cry!” We prayed together and she kissed my hand and seemed calmer, but then she became excited and said, “Wait! I need my make up on if I’m going to the doctor today!” So I stayed and put her make up on for her. Then I left.
Mom went to the neurologist today. While we waited in the waiting room (a lengthy wait today), mom asked about what dad and I were talking about. I told her we were discussing her ability to pay attention. Mom replied, “Oh I pay attention!! Maybe I just can’t hear people sometimes!!” She was annoyed. What we have noticed is that, when mom is nervous or there is a lot of background noise, she can’t hear well. Or better yet, she can’t filter the noises into categories. The background noise becomes the foreground and the talking to her or close to her (which is the foreground noise) is hard for her to discriminate. It sometimes appears that mom can’t pick out voices and talking from among other sounds in the environment. It sort of reminds me a lot of children with sensory disorders. To mom, all she hears is noise; not voices or speech.
The neurologist was thrilled to see mom, especially given the progress she has made. He set to work assessing her immediately after he greeted us all. He checked her vision for tracking and peripheral vision (mom seems to have lost some peripheral vision---which is the ability to see out the sides of your eyes even though you are looking straight ahead). He also said quickly, “Take your right hand and touch your left ear and close your eyes.” Mom DID IT!!! No problem. But --- when he asked her what month it is, mom said, “September” (even though she consistently says October---nerves I think). She knew the year, she could lift her arms and legs on command and could exert a great deal of pressure against the doctor’s hands on request.
The neurologist said that mom’s EEG showed no signs of seizures and her carotid artery scan showed no signs of abnormal narrowing. Her blood pressure was 130/76. He checked her reflexes and they were great. The facility never scheduled a CAT Scan for mom (routine) so she still needs to get one. The doctor’s from North Shore didn’t send the results of the latest angiogram yet either. I need to get that to the neurologist. The doctor wants her to continue with OT, PT and the botox shots for her hand. She has to return for a check up in 3 months.
I spoke to the neurologist about possible attention medication. The doctor was ADAMANT that he didn’t believe in that for mom because such medication would constrict her veins in her head and cause another stroke or bleed. In the words of the neurologist, “These drugs are all stimulants and are not good for her brain. We just got her back with us after so long we waited. There’s no way I will approve such a thing.” I agreed.
I spoke with the facility social worker about the next steps toward getting mom home. The social worker told me that mom is eligible for 1 of 2 types of care. Medicaid and Medicare pay for both types. Type 1 is called “Home Health Aide Care.” This means that mom would get an aide 20 hours a week several times a day at random times (2 hour visits throughout the day). Mom would have 3-6 weeks of in home PT and OT but then it would end. Maybe she could get out patient OT and PT then??
Type 2 is called “Lombardi Health Care” and this one would last as long as mom needs it (until death if necessary). An aide would be in the house with mom for 7-8 hours a day straight. Mom would get PT and OT intensively and then a few times a week as long as she makes progress and needs it (same Medicaid guidelines…no progress, no service).
Regardless of the care type, the PT tells the Social Worker when mom is ready to return home. Then the Social Worker begins the paperwork/form process of contacting the NYS Dept. of Social Services who sends a representative to assess mom at the facility. If eligible to return home by the representative of NYS Dept of Social Services, then more paperwork goes out to local facilities who offer this service. Once a response to pick mom up for the care comes in, then a representative from the local agency comes to assess mom. This could take up to 4 weeks (1 month) to happen. Then mom comes home.
Our plan is to approach the PT and find out an estimate of when mom can be ready to come home.
Claudia wrote: John went to see mom and put her to bed. When he got there, dad left.
The first thing he did was play cards. Mom was very tired. She went to
the doctor and we notice on days that she goes to the doctor she is very
tired. It takes a lot out of her. They put cards in order by suit again.
Mom likes to organize things and she enjoys doing this activity with
John. John didn’t have her write down what she ate because she was too
tired. She had turkey on a roll. John wanted to cut it in half and she
got mad at John and told him no. John took the soup away because it is
full of salt. There was a pie crust with pudding and John cut it up to
make it easier for her to eat. She didn’t eat her veggies. John worked
with her with a ball with bumps on it. He told mom that it is for
her hand. She pointed to her effected hand. She told John, “I have to do
this with it.” She took the ball and put it under her frozen finger and
opened up her left hand to wrap around the ball. John was very
impressed. Then she put the ball in her effected hand and rolled the
ball with her left hand on her tray. The CNA came in and put mom in bed.
He takes the dirty clothes and drops them off to dad each time he goes.
She kept telling John to leave and go home. She told him that she was
worried that Claudia would be mad because he came to visit her. When
John went to put her to bed, mom only had one hearing aid. He told
mom and mom said she definitely had them. John checked the bed and the
floor. He went out to the nurse and told her and looked for the CNA. He
went back into the room and asked mom to lift her head and mom lifted
her head and the hearing aid was under her head. Mom was very nervous
and kept asking John if he found them over and over. John showed her the
case with the two hearing aids in the case but mom was still worried.
John kissed her goodnight and left.
“For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts” Isaiah 55:9
No comments:
Post a Comment