That is completely amazing. I had tears in my eyes reading that post. I am so happy she is making so much progress now.
Let’s see, what has been going on with Mom? I feel like the further along I get in the pregnancy…the more procrastination I do.
Mom has been really just doing the same for awhile. No huge changes really. There are days that we go see her and she is totally “on”…..and there are some days when we see her, and she is tired and in a real relaxed mood and very sleepy.
My SIL went with me to see mom on Monday night. It was the first time she went with me. I acted like my normal self with Mom….you know, I kept giving her a hard time…and she would laugh at me and respond well to me. My SIL realized that you don’t have to walk on eggshells and be all soft with her. So that loosened my SIL up a bit and she started to have fun with mom too. I think that’s why her and my brother wouldn’t go see mom as much…it’s hard to stand there and think that Mom is not there. It would make anyone depressed and not know what to do. Well the next day, she took my 2 year old rambunctious nephew to see mom. I guess my mom was totally into having him there. Now, he tried to tear that room apart from one end to the other. The nurses were laughing and so was the lady who sleeps on the other side of the room. Mom was enthralled with him. Every where Jason ran, mom would follow him. Jason would jump up and try to crawl on her bed, push buttons on her machine, yell out….mom would laugh and laugh. She even raised her arms to try to take him out of my SIL’s arms. My SIL was really motivated, I could tell, by mom’s responses. She has brought the 10 and 5 year old girls to see her…but the girls are more afraid of mom right now. Afraid of seeing her like that. So that’s why my SIL brought Jason while the girls were at school. My mom’s whole world is her grandkids…I’m so glad she was excited to see Jason. The nurses could tell a difference in mom while he was there.
On Tuesday, I had my Dr.’s appt. I called Dad for an update on Mom and he said they were all going to dinner and wanted Brian and I to go. I told Dad that I wouldn’t be able to go see mom then. So he ended up going to see her before dinner. I told him I didn’t want a day to go by where she has no visitors. Well it was a good thing, because when he walked in, Mom was sitting almost straight up. WTH! She was hunched over on her side; the trach tube was stretched out. She was sobbing like crazy and tears were just falling out of her eyes. She was obviously in so much pain. Dad freaked out and laid her down so she was almost flat. Mom went into a horrible coughing fit. She has been coughing really badly lately. We think it may be because she is even more aware now…and she really knows that thing is in her throat. Hence, coughing spells. Who leaves someone with her heart condition, in a position like that????
Her coughing gets so bad now that she chokes almost, she turns beet red, and her eyes almost bug out. Poor mom. The RT is going to get the doctor to give her some kind of steroid to help. Dad went to get the nurse and raised heck about the condition he found her in. She also was so wet with sweat. They didn’t change her sheets and clothes because of her coughing. Just hearing about it made me nauseous because I can’t imagine if this happens more frequently. With mom more aware, she must have felt so helpless. I hate that feeling. Do we need to be there 24/7 so this doesn’t happen again???? Dad said her oxygen saturation was really low and her heart rate high. After she was properly lying down….she went back to her normal. What really makes me upset is that her alarm for her respiration was on. So there was a light above her door. Any nurse that was in the hallway could see the need to go in there…knowing we weren’t there. What if she had a heart attack or something….and no one went in there to check on her!!!! Grrr. Her alarm does go off frequently whenever she laughs or coughs. The nurse will sneak in behind the curtain and reach around and turn the alarm off without actually checking on her when we are there. That makes me mad, but I guess they figure we are there. Her alarm just beeps a few times, then the light stays on and the hallway light goes on. No loud noises like there were at the hospital.
Last night Brian and I went to see her around 7pm. She was sleeping when I walked in. It seems so weird to see her sleep now. At first, that’s all she did….and now when I walk in, she is usually awake. I went over to bug her to wake her up. I’m so bad. Well she was so funny because she would open her eyes and then close them again. I kept teasing her to quit being rude and look at me….what did she do but laugh at me with her eyes CLOSED! She would respond to everything we would tell her to do….., but with her eyes closed. I kept telling her what a lazy brat she was. She would just laugh at us. She lifted her hand several times to try to touch my face. I told her to quit punching me and again…she would laugh. But she got real serious about touching me and actually made it to my face several times. I made it hard for her to reach me too. I’m so proud of her. Again, she kept her eyes closed for most of it. ha ha. She is still shaking her head with a slight yes and no in response to questions. She still laughs at the appropriate times and rolls her eyes at things. She has been trying to move her legs too…but they are so shaky.
Today my dad, brother, and sister-in-law went to see mom. I guess they brought the kids to see her. Mom was so excited to see them. The 2-year-old is a typical boy…into everything. He was running around like crazy and mom was following him and looking at him. He ran up and down the hospital room. Well my brother and SIL have not heard mom talk yet. They tried the speaking valve one time and mom didn’t really say anything. That has happened with me one other time, where she didn’t talk much.
So they RT put the valve in and mom was a rockstar today. She talked up a storm, especially with the kids there. My dad was tripping. She said:
“Hi”, “Hello”, “Goodbye”…
“I love you” after my niece said it to her.
My dad asked her what his name is, and she said “Walter” and laughed. My dad’s biological name is Walter. But he hates that name and goes by Skip. So that’s why it was funny.
When Jason started crying because my brother was telling him to stop...mom couldn't see him. So she turned her head all the way to the side to look at my SIL and asked, “What’s wrong with Jason?”
She started crying when they were saying goodbye to her. Tears were actually coming out of her eyes.
My dad said that he was now having to run my grandpa (my dad’s dad, but like my mom’s dad) around to do errands for him (that used to be her thing to do) and she said, “yeah, I was wondering about that.”
Dad asked if her arm hurt her and she said, “yeah”. She was propped up weird and her arm was supporting all her weight. So dad helped her move.
They are starting a huge program with mom. First, she gets speech therapy 3 times a week. She is getting more physical therapy. Dad and I are going on Saturday to meet with the PT. She is going to show us how to stretch her properly when we see her. They are being more aggressive about weaning her off the trach. She is up to 3-4 hours of breathing on her own.
I can tell that she is gaining strength slowly. I just can’t believe these huge jumps she makes. She’ll kind of stay the same for a week…then she will show bounds of progress. It’s going to be an interesting ride.
My uncle called my dad and is going to move out here after all. He is staying with my dad and going to work with him. I am SO HAPPY. Dad really needs someone…and we’ve been trying to get them to come “home” for years. They moved back to MA for my uncle’s mom….now they will be moving here. I think it’s going to be a good thing for everyone…including mom. My aunt might come back out to see her in the next few weeks. I’m so happy about that. She will even get to see the baby….I’m due in two weeks! So my aunt has my nephew who is finishing high school this year….and joining the Navy afterwards. So as soon as school is out in June…I’m sure they’ll move out and probably stay at my parents until they get a place. Woo hoo!!!!!!
High fives to your mom from Alaska!
I can't read your posts without feeling happy!
Well my dad picked up my uncle today and it is real good to have him around. Dad is going to take him to see mom tomorrow.
The last few days, mom has been funny. She is usually sleeping when I walk in. Then when I bug her to wake up, she keeps her eyes closed and just laughs at me when I give her a hard time about it. The Physical Therapist (PT) sat with Dad and I on Saturday and showed us how to do the exercises on some paper he gave us. Apparently, the Head PT wants us to focus on her upper torso. But I asked about her legs because they are soooo shaky and he also showed me how to do the same exercises for her legs as her arms...just modified slightly.
So when I was there today, she kept resisting me when I was trying to stretch her out. Again, with her eyes closed. Yet, when I spoke about a family member or friend of hers...she would open her eyes and look at me while she listened. I kept teasing her that I must be so boring because she won't even look at me anymore....little stinker.
So I put on some gloves and got some A&D ointment and massaged her fingers straight for awhile. Then I put some lotion and massaged her feet. Her skin is starting to flake off her feet. From all those years of going barefoot. Within months, she'll have smooth feet again...all her callouses gone. I stretched her feet to keep them from pointing straight. That's something else we have to keep up. If we don't stretch out her fingers and feet (the nurse does it also during the day)...then she could end up with contracted and bent up hands and feet....and I don't want that to happen. Dad also does the same routine when he visits.
So now we also have to move her shoulder, elbow, and wrist joints in all directions.....Again she resists me. If I pull her one way, she pulls the other. Then she keeps her eyes closed and laughs at me when I get on her about it. Brat!!! I need to remember to set up another appointment to get her hair trimmed again. I don't want it to get bad again. When she is sitting up in a chair, then we'll let it grow out for her again.
She also kept trying to talk to me. So when she wanted to say "yes" she would again, push air out of her trach in such a way that it would make the dolphin sound. So I gave her a hard time about that too. She enjoys it.
Other than that, nothing really new. I think my Sister In Law is going to bring the kids by to see her tomorrow. So it wil be interesting to hear about that.
Sounds like she's doing great and is SO blessed to have you and your family taking such good care of her...and protecting her!! I can't wait to hear what her first interaction with Dylan is like!!
Sounds like she's doing great Teresa, just wanted to let you know i'm still thinking of you and praying!
Yeahhhh Mom! I'm so jazzed for you all-- even on a molecular level your mom is determined to get through this. What an amazing woman!
One of my fave bloggers is here-- he's going through this http://madmikey.mu.nu/ Another blogger is keeping us updated on his progress. Before this happened his blog was interesting and now I am glued to it and praying for his recovery!
Just thinking about you. I am praying for you and your family. I can only imagine how busy you are now that Dylan has arrived. I also can imagine what emotions you are going through. HOW ARE YOU FEELING?
I know it's been a very long time since I last posted. Since having the baby, I have really not been posting online much. I have time to check and read, but that's it.
The growth Mom has shown has been amazing. Is this the same person that the doctors wanted to let go? I will update you on where she is at today. All the steps that has got her here will have to wait.
Currently, Mom is off the respirator completely. She is completely breathing on her own. She still has the tube in her throat, but that is closed off. She is receiving some oxygen through her nose right now. That's only to give her a boost. If she continues to be successful, then in a few weeks they will remove the trach completely and let her hole heal up.
She is able to talk now without having to worry about a speaking valve or anything. She has been caught talking to herself when the nurses or my dad walks in to see her. She is doing wonderful with the speech therapist and is starting to make some sentences. She can pretty much repeat anything you tell her to say.
It does seem that she has lost some of her memory. I'm not quite sure she remembers Dylan or that I was even pregnant. We brought Dylan by to see her and she looked over at the stroller in interest. We held Dylan up to her to see and she was smiling, but it was not the reaction that I thought she would give. I am still not sure if we all look "familiar" to her or if she really does know who we are. I also don't know if she realizes what has happened to her. Sometimes she answers our questions correctly and other times she says she doesn't know or gives us a wrong answer. So again with time, her memory may come back in pieces. She has been talking about her "car" for the past week or so. It's all she wants to talk about is "my car". If you ask her a question, she responds with "my car"....so we are not sure if that was a last memory or something. We keep telling her we are going to sell her stinking car if she talks about it again...she just laughs and laughs. It has become somewhat of a joke with her now. So if we ask her what someone's name is, she'll talk about her car! She has also been asking about water. I'm sure she is thirsty as heck! She still needs to have someone work with her on swallowing before we can go there.
My aunt visited for almost two weeks just recently. I'm so glad she was here because I haven't been able to go over to see mom, except that one time. It's weird because I was going there every day and now I can't with Dylan. I'm going to start pumping some milk, so that way Brian can stay home with Dylan at night and feed him and I can go by myself over there to see her. I don't want to take Dylan over there during the day...no telling what is floating around that he could get sick with. I also don't want to come home and give him anything I might have picked up. Anyways, when my aunt was here, the nurses put my mom in a type of wheel chair that reclines and wheeled her into the TV room over at this place. My aunt and mom watched soaps together and my mom laughed at all the strange sounds she heard in the room. She did really well sitting up.
Mom's heart is still the same. There is nothing we can do for that with the exception of a heart transplant. It looks like that is pretty stable for now because she is on a medication to regulate her rhythm and her blood pressure has been perfect.
They are talking about sending mom home soon. So the social worker wants to sit with dad and teach him how to do everything that needs to be done for mom. Feeding through her tube, giving her meds, bathing and transfering her...etc. So we'll see how long it will be until she is ready for that....but wow! look how far she has come!!!!
Welcome Master Dylan! I spaced on his arrival!
I am so excited for your mom-- I have changed my mind on that life support issue. I'm jazzed for your dad and everyone!
Thanks to those of you who have asked about my mom.
Well, I haven't been able to get over to see her as often as I like. Tuesday, she finally got her trach removed. They are letting it heal up so that the hole closes. She is successfully breathing on her own without the use of supplemental oxygen. We are so thankful for that. Mom is also off of the feeding machine. She still has the feeding tube in her stomach, but all feedings are done manually now. She gets one can in the morning and afternoon and two cans at night. Her heart is still the same. They just have her on meds to control the rhythm. They also tried to work with her on swallowing..but she just spit out the water they tried to give her. It's weird because she will swallow saliva...but not water given to her. She usually shuts her mouth tight when you put anything near it.
Mom's hands are still very painful for her. She tells us that they hurt her because they are so contracted and curled. It's hard to do any therapy on them because of the pain. There are different treatment options...but what the insurance pays for, is a different story.
So, with that being said....they have been getting her up into a reclined type of hospital chair. It looks almost like a shortened hospital bed. They wheel her into the TV room and she sits up and watches TV with some of the other people there. The day my SIL and I went, we brought Dylan. They were just getting mom up to go to the TV room. So we went with her in there. She was pretty funny. She talks non stop now. My dad has walked into the room and she will be laying there talking.
Some of the things she says...although not so nice are "Oh my God". She says that to everything you tell her. My dad told her that she is married and she says "Oh my God, I'm married!" and then he says "yeah you're married to me" and she will respond "Oh my God!" She is a parrot now. She can say anything you tell her to say.
Dad just got her to count and say her alphabet too. It's interesting because she remembers those basic things, but when asked about people's names...she will only remember some. She usually responds with her own name, Linda. So if I ask her what my name is, she'll say "Linda".
Today I was reading through my first posts to the board when everything first happened to mom...and I can't believe how different she is. I was celebrating just the fact that her eyes opened for minutes....and now look at her. She is lively and animated. It's truly unbelievable.
They have been working with my dad on caring for her. He has learned how to feed her, give her medications, give her insulin shots, give her speech and physical therapy. They are talking about discharging her toward the end of March. So she will go home. Dad, of course, has lots to do at home before that happens. I just hope that he is proactive and gets on the ball. It will be nice when she comes home because then I can go see her almost daily again. I just hate to bring Dylan into that germ infested hospital environment. So home will be much better. I also think that mom will like it more because someone will be with her, talking to her everyday...all day. Whereas, right now it is just the nurses sometimes or us when we visit her. Her speaking will be so much better. Dad is supposed to talk to the insurance company to see what they will pay for after she goes home. I hope we can continue to take her to therapy sessions somewhere..or maybe they can come to the house. Lots to think about...but so blessed that she is doing so well.
That is WONDERFUL news, Teresa!! I am so glad your Mom is doing so well. I have been keeping up with the journal and was anxious to see what the newest update told. I hope she is about to get home soon, I know she will do much better once she is there. She will feel more comfortable there I am sure.
Oh Teresa, I can't believe what a difference there is in your Mom. She has come SO far! I also remember you celebrating seeing her open her eyes or follow you round the room with them.
It must be so exciting to see her coming home soon. It sound like it will be much easier for you and the rest of the family if she's close by and you know she's being taken care of. Your Dad must miss her like crazy.
I hope her mind gets clearer as time goes on, also that you can do something about her hands.
Send her lots of love from me.
I'm not trying to be gross. This worked for my aunt, who I admit only has arthritis in her hands but enjoyed the saucey humour that goes with this: try a vibe with multiple heat and speed settings. The special orthopedic one was way more expensive and not as versatile in speed or heat or for her, she enjoyed the extra sleeves depending on how tight her hands were.
Mom's coming home on Thursday! I'll post more later today.
WHoohoo! I am so happy for you Teresa. What a strong woman your mother is. Your family must be so excited. I am amazed at how far she has come.
Yes Mom is coming home. Well, the thought of mom coming home has left me with mixed emotions. I'm happy that I still have her to look at and hold. I'm still so distraught that I don't have her to carry on a normal conversation with. She talks and responds to us. It's not mom though. I mean when you ask what our names are, she responds with her name. She keeps calling things "sticky" and "grandpa". I imagine she means to say other things, but those are the words that come out. She just isn't my mom. Ya know. Her words of wisdom, her voice of reason. Her telling me everything always works out. That's all gone. She responds to us, but she doesn't start the conversations. I can't ask her how I was when I was Dylan's age....or when I got my first tooth....all those things. She would just laugh or say "sticky grandpa".
I'm also bummed that she doesn't really give two cents about Dylan. She looks at him and I tell her "isn't he cute?" and she says "Yeah" . But the way she says Yeah is like someone with damage to their brain would say it. Real slow and monotone. No feeling behind it. I don't think she really knows me. I think she recognizes me, but doesn't know I'm her daughter. If she does know me as her daughter...I don't think she remembers me being pregnant. I just feel so jipped. I hate that she wasn't there for Dylan's birth. She missed it by 3 months. God she would have loved him so much. During my leave, she and I would be going to lunch each day....going shopping. Arguing over how to take care of him. Holding me when I want to give up. Helping with his laundry and baths. It's just not fair that she had this cardiac arrest. I need her. I hate being strong. I hate being okay with it. I want her back. If I sit too long and think to deep about it...I lose it.
Well she is coming home. Her bed and her lift were delivered to their house. My dad also received her cans of food to put in her gastric feeding tube. So if she gets her machine for her breathing treatments in time...she could be home by Friday. Wow! I think that being home is really going to do her well. She will have someone talking to her all the time...always taking care of her....she can watch her grandkids jump and play around. They have a reclining bed like chair that she sort of lays/sits up in. So Dad is planning to put it by the big picture window in the living room during the day. Then at night he will put her in bed. He put her bed in their room and moved his bed over. So their beds will be side by side.
I don't know how Dad is going to do this. I'm secretly afraid that this is going to age him considerably. He needs to wake up every two hours to turn her. Sure, I am waking to feed Dylan every two hours..but he'll grow out of it. Unless mom can start turning herself....poor Dad. He wants to do this though. He feels that there is no other answer, no other option. Mom would do this for any of us. I wish he would get a nurse to come in at least 4-5 hours a day, so he can rest. Oh well...he won't listen to us.
I am glad that I can just go over and see her more now. They live around the corner. I don't have to worry about Dylan catching anything anymore when I visit her. I think Mom will begin to talk more and progress more being at home. She'll definitely get better care...even though they did a pretty good job there. The respiratory therapist that basically was aggressive with mom and the reason why she progressed so much so fast....well she left her name and home number with Dad so we can call her if we ever need anything. She developed a fondness for mom. She wants me to keep in touch with her about Dylan. Dad is going to get her a gift card as a thank you for all she's done.
So I'll update more on homecoming day.
Just wanted to let you know that mom is coming home today! Dad was waiting on getting all of her supplies before she came home. So he has everything he needs for her to be successful at home. A hospital bed, reclining chair, lift, food, breathing treatment machine, meds...etc. We are very excited about this because we feel that she is going to do so much better at home. Dad will be staying home to take care of her full time. He has several guys that work for him (including my brother) so they will do the jobs and Dad will stay at home to do the paperwork stuff. With him talking to her all day and taking care of her, with the grandkids over all the time to visit with her, and with DH, SIL, me, grandpa and my brother there to talk to her....I think she will make even more gains. We hope that memories will start to come to her.
Mom doesn't have her trach in anymore. The hole in her throat has healed shut. She only has her feeding tube in her stomach. We are hoping that with time she can learn to swallow again. If you try to give her water, she usually spits it back out. She hasn't had anything in her mouth since her accident...so that's going to take some getting used to. Mom is able to repeat anything you tell her to say. She is still not really able to elicit conversation. She wouldn't think of a question and ask you. She is able to answer our questions though. Sometimes she gets the answer right and other times she has difficulties and her answers don't really match the question. She is able to count and say the alphabet. We are still not sure if she recognizes us as her family (husband, son, daughter, etc.) or if we are just familiar to her....time will tell. They are not able to do any tests on her to see how much or what brain function she has. She keeps improving day by day and we are just going by that. Every time I see her, she is doing something different that shows me that she is improving.
As for Dylan. She has seen him and met him. Although I don't think she really "gets" who he is. She has blown him kisses....so that means alot. I don't even really know if she knows that I was pregnant.....even further that I'm her daughter.....so again, we are hoping that being at home will bring back all those memories. I'm so thankful that she made it this far and is doing so well.
I will let you all know more after she's settled in a bit. It's going to be so nice to just go around the corner to see her...rather than drive the 20 minutes.
Mom has been home for almost a week now. My poor dad is getting no sleep because she is up all night. She is having these weird anxiety/panic episodes. They really freak me out. The nurse thinks they may be because of the meds she is on...not to mention that she might have shingles. I don't know. I will update more later.
Thinking of you, and your family Teresa!!!
Oh goodness. I'm glad she's home but it sounds like it's really stressful for all of you, including your mom. I'll keep on praying!! Love ya!!
Thinking of you guys, Teresa!
Just wanted to update you on mom.
Well she is doing well at home. She seems to be moving around so much more on her own. As soon as you get her centered and up on the bed....she wiggles herself crooked and down to where her feet hang off. She is always full of smiles and loves to talk....to us, to the TV, to herself. She is still having the moments of panic and it seems like she is also having some kind of hallucinations. These are really hard not only on us to see and hear, but also on her because she really believes something is going on and gets herself so worked up. The nurse thinks it may be because of the meds she is on. So we are in the process of talking to the doctor to get a new med to help. This same med should also help her sleep. The most she sleeps is about 2 hours at a time...sometimes. Poor Dad is also getting the same, if not less sleep. I don't know how he does it....I guess you just do. Ya know? Dad has a lot going on...but really seems to be so much happier with Mom home. My uncle Jim is also staying with my Dad and Mom. He is working for my dad right now. That helps out so much! My aunt is still in the process to be out here permanently too by the end of the year. Jim bought mom a stuffed rabbit and mom will sit and pet it with her finger. It is so cute! Her hands are starting to contract and her fingers are not able to move much. So the therapist is helping with that too.
As far as her care is concerned....she has an occupational therapist, a physical therapist, and a speech therapist that come out occasionally to work with her and us. Mom only has so many visits from them a year...so we need to use them to our advantage. So the therapists are going to show us what we can do at home. We will work on a goal and once she meets the goal, the therapists will come out and reevaluate and give us more we can work on. They had mom sitting up at the side of the bed with her feet hanging off, but she needs people holding her up and helping her. She won't do it on her own. We are also in the process of learning how to use the lift to get her to be able to sit in a modified type of wheel chair, so she can sit in the living room for a few hours a day. Right now she is in my parent's bedroom. Dad moved the regular bed over and her hospital bed is side by side with his. She likes it better in there and seems to be much calmer. The therapists want us to have her sitting up in the other chair a little bit each day though. This will help us reach the goal of getting her strong enough to be in a regular wheelchair. That way she can do more things and it will be easier for her to go to the doctors...or in the future, out to places. The speech therapist isn't able to do too much yet. Mom has to be able to consistently follow commands, be sitting up in a wheelchair, and be able to move her tongue around by command before he can do much. They want to do a swallow study on her to see if she can eat...but not until all those things are accomplished first. Right now she still has a feeding tube. Mom also has a lady that comes in about 3 times a week to bathe her and wash her hair. She quickly picked out mom's loving spirit. She said she could tell that mom is loved by whoever comes across her. I told her that that is how she is...always doing for others and never asking for things in return. Everyone loves to be around her....when she was well and even now with her sick. She has a nurse that comes out once a week to evaluate her and report to the doctor. She also has a social worker that provides us with some great resources. Everyone has been so nice and kind to mom. If Dad needs to go to work, he has Jennifer, me or a "sitter" come stay with her. The sitter is so wonderful and I really like her. She is good with mom and able to give her meds, change her and make her laugh.
Mom still seems to have a problem with her memory. We aren't sure if she remembers us or if she is "starting over" on getting to know us. Only time will tell. If you ask her who you are...she will normally say Linda. We've put her on the phone with a few people and seems to be able to carry on a conversation by answering questions that the person on the other line asks her....but she really still doesn't elicit the info from you.
I just can't believe how far she has come in this journey. She is surrounded by people who love her and care for her and I am so happy for that. Keep her in your thoughts and prayers!
I am glad to see that she is doing so well at home and hopefully with time, the panic attacks will start to diminish some. You and your family are always in my prayers and hopefully some of her memory will start to resurface. :bigarmhug: I admire you and I admire your dad for all you have done for her, for everything you continue to do for her. You have been the best things she could have right now and I honestly believe that her having the both of you be so strong for her has helped her to improve so much.
I miss her so much...............................
Things are not going well. My heart hurts for you!
I didn't realize I hadn't posted here in a while, but I want you to know I always check for updates. I pray for your family often and will continue to do so.
Love and hugs to you, sweetie!
I hope everything is geting better, Teresa! I'm still praying for your mom and your family!
Teresa - I haven't posted here in a long time either - but I do check in to see how things are going. Your mom has come so far. Thinking of you all often. HUGS!
Hey there. I wanted to let you know what is going on with mom. It seems like a lot of people ask how she is…and it is so difficult to really sum it up. So I’m going to try.
Mom has come so far since her accident! Wow, we are so excited to see how much she grows each day. She is currently at home. Dad has a hospital bed in their room for her. The bed inflates and deflates to help her avoid pressure points. He pushed his bed off to the side and sleeps there (well, when she lets him sleep). She stays mostly in this bed in the room. She likes to be there. Most of the time, Dad uses a lift to get her up into the "Geri Chair" in the living room. (You can look it up online to see what it looks like.) He usually leaves it in the reclined position…but lately she has been sitting more upright in it.
She still is able to talk to us. A lot of you have spoke with her on the phone. If you want to do the same, just let me know and when I am over there, I will call you. She can carry on a conversation, but it seems like she is more able to answer or respond to what you say than ask you questions. Although, lately she has been asking us questions about what is going on and what happened to her. We think some part of her memory has definitely been affected. She really gets frustrated when she can’t remember things or when she wants to say something, but it comes out differently. That happens a lot. She is now able to follow some commands. The other day she was straightening out her leg on the bed and it rubbed on the sheets making a funny sound. Mom said, "What the hell was that?" We started laughing. I told her to do it again and she proceeded to move her leg in the same way, trying to make the sound. If I show her Dylan and say, "Isn’t he cute!" She will say, "Yeah, he is." Or if you ask if she needs a blanket, "No, I’m okay."
She also has moments where she gets really upset and flies into a type of rage and freaks out and it seems like she hallucinates. She will say that her "kids are killing her" or "Oh, God! Please." And gets paranoid and yells at "them". But I will say, "mom, I’m your kid and I’m not killing you. Kevin (my brother) is at home and he isn’t killing you. Then she says, "no that’s not what I mean." When I ask her what she means, she just says, "Never mind". So again…she’s upset by something but can’t come up with the right words to explain it. We think that maybe her feet start to really hurt her and she can’t verbalize the pain. She seems to go into another consciousness when this happens. It takes Dad awhile to settle her down. It’s like you have to get in her face and have her focus on you. This is really stressful because we can’t make it better for her. Sometimes she will do it all night long. My aunt was here visiting for almost two weeks and she was subject to that too. But after you get her to calm down, she is fine. Her hands and feet are still contracted and I think painful too. We think that this is the reason why she gets angry. Dad massages her, soaks her hands and feet, gives her medications and feeds her through her feeding tube, changes her diaper, bathes her, washes her hair, does range of motion exercises with her and does anything else needed to take care of her. He is amazing and I really admire what he has done for her.
I try to help as much as I can. I am working full time and when I get home, I take care of Dylan. I do try to visit mom every day. When I go over I try to do what I can. When school gets out for the summer, I will be able to watch mom more for Dad when he needs to go to work. When I am not available, he calls a lady named Romanita. She sits mom and takes care of her. She was recommended by the social worker from the hospital. She is really good with mom. Poor Dad, though. She hardly sleeps at all, especially at night. I don’t know what energy he is living on. He keeps telling me that he wouldn’t have it any other way. When my aunt was here, she had my dad go get a hotel room to sleep all night. She watched my mom. I want to do the same, but I need my sleep to take care of Dylan and work. I also nurse him. There is no way I would be of any help to him if I were sleep deprived. If you knew my mom, you and I both know that mom would be pissed at me for taking time or energy away from the baby. She was always afraid that she would be a burden on me or Kevin in the future when she got older. I always told her I would take care of her and she would say, "no you won’t, I would never put you through that." That, I know, comes from all that she has went through with her family.
My family keeps telling me that it is okay that I can’t be around all the time and it’s not expected of me…because I have Dylan. I guess what is so hard is that I used to be available "emotionally" and "physically" for mom anytime she needed me. I didn’t have a baby then. But now that I have Dylan, I can’t be "available" and it tears me up inside.
Medically, she still seems to be doing okay. It’s hard because she only sees the home nurse occasionally because they are only allowed so many visits. Her body right now has a type of rash on it. The nurse said it may be all the meds she is on. So Dad has been putting cortisone cream on her body every day. She also has weird bumps forming around her palms that look like blisters. She picks at her hands all the time. We put Neosporin on them because they turn into sores. It is so hard to take mom to a doctor’s office, so we rely on the nurse to take information to the doctor. I think she is in really good shape and am so glad she is home with us. I’m really looking forward to more improvements.
Thank you so much for the update, Teresa!
I never read this journal where I am not completely amazed at how far she has come, I always knew she could do it! Everytime you update she has gotten better and better, so that is just wonderful!
I know what you mean about the "available" thing..my Dad is in very poor health and while he doesn't have to have the constant care that your Mom does, sometimes I feel that I should make the most of his time, you know?! And I often feel like not being there with him is making me a horrible person. It is something I struggle with all the time, so I know exactly what you are feeling. I just try to remind myself of what my Dad wants and that is to live my life and take care of my family...hovering over him 24/7 won't change anything and I know he knows that I love him and he is happy to see me whenever he can. Once again, it is NOT like your Mom's situation...but I also believe that she wants the same for you. You would be a great help, but she would want you with Dylan. You are an awesome daughter & Mommy...don't forget that!
I am always praying for your family...the strength you all have just amazes me. I can see what made you who you are, your parents are both amazing people.
(((((BIG HUGS))))) and thank you so much for the update!!
Still thinking of you and your family often Teresa. It truly amazes me how strong your mom is. What a woman!!!! Tell her that your pg.org girls are praying for her and we have been all the way through!!!! Give your family hugs from me!!!
She really is a miracle, huh? I still remember that lady trying to get you all to give up. You are doing much more for your family than you give yourself credit for. I'm so glad she's come as far as she has -- I'm with you -- keep bringing on the improvements!
Btw -- I had plantar fascitis in my foot and it hurt like CRAZY in the middle of the night -- it would just cramp up really tight. I bet you're right about her feet -- ouchie.
More prayers and love coming at ya!!
It was so funny:
So my dad was walking quickly into his bedroom while I was sitting in there telling my mom about my day. Mom sees him and says "I love you" and my dad didn't reply....so she says it again..."I love you"...again no reply...so she looks at me and chuckles and says...."I guess not!"
I laughed so hard! Dad goes "what happened?" I told him and he just laughed and told her he was sorry and that he loved her too.
Well my dad has been doing such an amazing job taking care of my mom! He exercises her every day. She is now able to move on command. Yesterday a nurse from Kaiser finally came to see my mom. She was amazed at how far she had come. I guess before, Kaiser was too busy to take on my mom's case, so they outsourced to another home health agency. Well now Kaiser is taking her back and sending a new "social worker" over to evaluate mom's needs. It looks like she may get a new round of therapists. I pray that they will start ongoing therapy with her. I would love to see her get into a wheel chair or walk a few steps to the bathroom. I also hope that they find something to help her sleep. Grrr! My poor dad!
The nurse is thinking that the sores on her hand is an infection. That must be what is causing her blood sugar to be so darn high.
Gosh, it has been way too long. Almost a year. Since having Dylan, I haven't been able to be around as much as I would like. Dad has been working full time. He has a lady, Romanita, come in and take care of her. This lady is amazing! She comes at 4am and stays until 3pm every day. She tells me that if my dad can do it (wake up early), so can she. She takes care of my mom from head to foot. She picks up her supplies, bathes her, and loves on her. I just love this woman! It really has taken a lot of the worry from me. It's hard on my dad financially, but it is the only thing he can do. Nurses or therapists who come in to check out mom, always tell my dad that whatever they are paying her...it isn't enough.
Well status now is she is still not able to move or turn herself in bed. She can move her arms and legs....but that requires effort. She ulitmately has really no muscle mass left.
Romanita has worked with the nurses to decrease my mom's insulin down by 10. Mom has suddenly started talking more, is not as sluggish and is more animated. She is sleeping better and is allowing my dad to get some sleep.
I don't think that she will ever walk and possibly won't be in a wheel chair. But gosh...who the heck knows. She can't use her hands or feet because they are kind of curled up. She still eats through the feeding tube in her belly. Ultimately...it's not 'mom'...but she has the same laugh and the same soft skin and the same eyes.......so that's enough for me.
God do I miss her though! I have so many questions about Dylan......hmmmm. It's just really nice to be able to go to my BB and get advice. I could always ask my MIL....but it's not my mom. I love my MIL though. Well that's enough for today.
I was just thinking of you, Teresa! Like a few hours ago!
Good to hear the news on your mom-- Romanita sounds like a dedicated lady. I want to clone her.
Dylan will know his grandma-- it's great that she is talking more. Your dad sounds like a dedicated, loving prince.