jansjourney

[jansjourney]

6/1/20

Hi everyone!

Life has been hectic so I forget to update this. Thank you for continued prayers and sending positive vibes our way. We’ve remained safe from coronavirus luckily. Still continuing treatments. Hoping to get back into therapy after a few months of a break. Mom’s been happier being home than in a day center but still hates the idea of an aid coming in to help. Probably will never like that because she’s such an independent soul. Hopefully this will motivate her to really work in therapy. Still trying to figure out the plan as things open back up and I have to go back to work. Hopefully the transition won’t be too rocky.

Hoping you all remain safe as well!

💜Allie

[jansjourney]

Quick update

4/18/20

Mom and I are surviving during the quarantine due to Covid-19/CoronaVirus. Been stuck inside for a month now and getting a little cabin fever but we’re taking it day by day. Her day center shut down and I’ve been working remotely from home. I do have a little help coming for a few hours each day to break up moms time since I am working full time. Mom is adjusting. We are hoping things can calm down soon so we can get to a new normal. She gets out once a week for a doctors appt that has to be in person to keep her on track. I get out then and for groceries. We are hoping all our family and friends stay well and healthy! We are about to begin my birthday celebrations indoors!

Thank you for continued love, prayers, and support!

💞Allie

[jansjourney]

2/5/20

Hi everyone! I have not gotten a chance to update much recently, but wanted to share this beautiful picture of mom. Her day center sent it to me and said they got her to play Bingo today, and she won almost instantly. That’s my girl!

We’ve settled from our ER and hospital trips so I have declared February as the new year. Things will look up from here!

[jansjourney]

[jansjourney]

1/13/20

Good morning updates. So mom is still in the hospital but looking more and more like her usual self (post stroke). Still has a nasty cough but they’ve taken her off of antibiotics and assisted oxygen. Also, luckily I did not catch the flu from her, but I did pick up a virus from somewhere, so I am also a little sick. Yuck. Best timing though since she has professionals taking care of her every need while I can relax and just be an interpreter.

As far as the heart thing, I reached out to her regular cardiologists for some clarification and information. They said they read the notes and didn’t see a reason for heart catheterization at this point and that her hormones in her blood that show heart stress are likely elevated bc of her heart condition and the flu, and not a heart attack. Good news!! Still waiting to heart from the cardiology team following her on the inpatient side. Hopefully they are consistent.

Thanks for keeping up with us!

[jansjourney]

1/12/20

This post will be a short update. Mom is back in the hospital. Thursday we came from medicine making her too drowsy to waken. Friday we came back. I thought we were coming because she couldn’t stop coughing so I though she had aspirated when taking liquid meds at the hospital. Turns out she has the flu. On top of that, it has caused her body to go haywire. She’s had some heart failure and a heart attack. I don’t have details right now because they seem to go back and forth on what’s going on inside her. Hoping things settle so she can feel better soon. We don’t want any visitors because we need to stop the spread of the flu. I even think I’ve caught it but I am taking meds and drinking lots of fluids.

Please send all the prayers her way that you can muster. Thanks 💕

[jansjourney]

Testing Boundaries

1/6/20

Happy New Year!!! So for the past few months I have kept in my mind that January will be much better. While we are in a whole different space and progress has been made on things I need to do as well as progress with mom’s recovery, it’s not quite where I hoped. Every step I take requires 5 other steps in order to make a bit of progress. But definite progress can be seen and tracked so I guess I am in an entirely different space.

So the title of this post, testing boundaries, it’s good! In the past week, my mom has had some show off moments. Last Thursday I saw her turn and rest on her side in the bed for the first time. I’ve never seen this. That same night she was very fidgety and kept inching her way all around the bed. I was shocked and impressed. At one point when it was time for me to get her up and to her wheelchair, she wanted to try it all herself. I held my arms up to guard and let her go for it. She did pretty well. Definitely not ready do it unsupervised or without guard hands, BUT she made it unharmed. Today she took a clear step with her right leg and looked up to see if I noticed. She’s been able to weight shift during transfers to get herself around from one space to another but never actually moving her leg. I had to test her. When she got in the bed, I held my hand right above her toes and told her to touch my hand. She did!! I held it higher and she did it again! I was very excited for her.

Today began cycle two of treatment of who knows how many there will be total. The NP didn’t have much news to pass along because a good enough time period had not passed for her to see if the treatment is having any effect on the condition we are trying to get rid of. Fingers crossed and prayers continued that after this cycle we will see some positive movement. Otherwise, we will be meeting with a doctor who will likely add more meds to the treatment. Hoping we don’t get to that point.

Well, mom’s sleep for the night so I think I am going to take advantage and see if I can watch some Netflix before I go to bed. Talk later!

[jansjourney]

The Ultimate Test...

12/29/19

So there are 3 huge things I miss due to mom’s stroke. 1. Talking with her. Talking to her and her reacting is just not the same or even close. I try to do all the same chatter that we used to but it’s soooo different when it’s one sided. 2. Her food. Omg, this is huge. She always proudly told people that I annoyed my college roommates because everything I ate was followed by, “but it’s not like my mom’s.” This was usually about cafeteria food but it also came after some restaurant food as well. 3. Last, but most least, I miss just hanging out and doing stuff. Any of my friends or coworkers that I’ve told about the stroke, their first response is usually, “but you all did so much together!” Both of our Facebook feeds are probably 70-80% of us being together.

So today I am here to talk about #2. Mom’s food. I love the generosity of our friends and family members with delicious dishes that I’ve truly enjoyed, but doesn’t stop me from missing HER cooking. I am not a cook. Lol. I can make a few things here and there but I did not inherit her love of, patience for, or talent of cooking. I also can’t stand raw meat. It makes me lose my appetite. I’ve been trying though. I’ve come up with some pretty decent things that I’ve impressed myself with. It’s usually hard to think of things that will 1. Be easy for her to eat, and 2. Be of interest to her. These are two hard battles to tackle. Sometimes I’ll come up with a meal that just doesn’t get eaten. I’ve learned chicken breast is too tough/dry for her. She doesn’t really like sauces on it. And sometimes, I just make a great meal that she can eat, but it’s not something she wants. There are times when she likes a meal one day, but the exact same meal a couple weeks later is the worst thing she’s ever put in her mouth. Her tastebuds have changed drastically as well. All of this makes it very difficult when it comes to food. She can’t give feedback or suggestions of what she likes or wants, so about 50% of the things I plan and prepare for probably don’t get eaten. Most days it’s easiest to let her direct me to a place she wants food from and let her pick a dish. That way I know she’s eating a full meal.

Back on track... so here I am, CRAVING my mom’s cooking. So much that I am have to attempt something. It’s been 5 whole months without it, and I. Just. Can’t. Deal. Anymore. So, I decided to try her chili. This was a difficult thing to tackle, simply because I didn’t want any input from anyone else. No two chili recipes are alike. And I wanted HERS. She’s been able to kind of direct me through cooking a couple veggies, and they’ve turned out almost right, but sometimes she’s not in the mood to help or just doesn’t know what’s next. This weekend was a sleepy one for her, and we were battling catching a cold very hard (we won by the way). So I was pretty much on my own. I tried to playback a scene of her cooking chili in my head, and I got everything I could remember her putting in it. And I went for it! I tried to take two different types of canned tomatoes to her in bed to figure out which one she used. She looked extremely unsure and picked one. Once I dumped it in, I knew it was wrong, so I fished out each tomato to throw it away. Very long story made short, I made the chili...and it was GOOD. It tasted just like hers to me.

Next step, who will eat this chili? So jumping back to my struggles earlier from cooking, I was worried that even though this reminded me of her chili, would she eat it? When I try to ask her ahead of time, she gives me a...

So I invited my boyfriend over to dinner to give myself another judge. Increase the pressure a bit... Someone who can definitely say whether it was a success. Now, he’s never had mom’s chili. Nor is he a huge fan of chili, but he will still give an honest opinion. We sat down to eat, I took a bite, and OMG, it tasted just like mom used to make. Like EXACTLY!! I was happy from that win alone. But on top of that, my boyfriend really enjoyed it and ate two huge bowls. And even more excitingly, my mom ate it all. Throughout she gave a few surprised “mmm” sounds. In my mind, she was like, “OMG this tastes like mine. OMG Allie did this. OMG she’s not a lost cause in the kitchen 😂.”

I am going to bed with a smile on my face. Not only did I replicate mom’s chili, but she even gave her stamp of approval. I’m so happy. Goodnight, everyone!! 💜

[jansjourney]

Merry Christmas Eve🎄

12/24/19

The past two days I went to mom’s Therapy sessions. I figured they’ve seen her for a couple weeks so I can see how things are going.

OT was Monday. It went pretty well. I learned some range of motion exercises to do with her to try to loosen her arm and fingers. That night she was in so much pain though. They wanted to practice standing and pivoting from chair to chair with a walker but once up with the walker, mom decided let’s walk! Lol. So they couldn’t get her to understand they were only switching seats. Lol. They went with her walking since she wanted to walk.

PT was today. The therapist made a strap configuration to teach mom when to bend her right leg so she has the true motion of walking without the hyperextention. This was my fav session to walk. She walked 90 feet with the walker and the therapist advancing her right leg, took a break, and did it again. This was the best I’ve seen. Also they got her in a seated stair stepper machine. I’ve seen her in this before but they’ve left her right arm off. This therapist strapped it on to the right handle so my mom would still get the motion and exercise. Also since she was controlling the machine, she could decide how fast she was comfortable with and how far to extend. This was great to see.

Speech...another situation. They did some matching for pictures and objects. Mom is good at this. Once asked what do you do with this? (A brush, dice, a cup) she usually just did a banging or shaking motion. I tho is he understands in real world context but her brain is not good at playing pretend. Then they did some matching worksheets matching words of objects. This was also iffy. They practiced writing her name and she filled n Lowery herself. The therapist said they’ve only written L so that was new for both of us. For the first time they also practiced DOB. Mom filled in the day herself with no prompts which was nice. I was told they hadn’t practiced speaking much because it’s not functional at this point. They mentioned maybe doing an eval soon for assistive devices. Mom rolled her eyes to this. We tried practicing a few words and sounds but mom was getting frustrated too easily today.

I went on about my day while she went back to the day center. I went to pick her up an hour early and she was noticeably upset. I was scared that it was because she was there on Christmas Eve. After lots of fussing and a repetitive hand motion, I asked if it was about speaking. She nodded. She’s scared she will never be able to talk again. And she agreed that that’s why she won’t use the apps, she is scared it’s the end of speaking. I tried to explain that we all know she has a lot she’s trying to tell us and that right now we don’t understand it. She nodded. I went on to say the apps or devices are to give her a way to communicate with us now, but it’s not the end of working on speech and words. She didn’t like hearing this. I kept trying to explain its so we know what she wants to tell us now and gives her time to relearn words. Not helpful. Tried to explain her brain is healing, it got injured badly in the stroke and it takes time to heal. The evening was a wash. There was nothing that could help. So we had dinner, took showers, and I laid with her until we both fell asleep. Hopefully tomorrow will be better. At least she gets to rest as much as she wants.

I’m stil very happy and excited with the progress I have seen. And I do think she’s coming around to the people at the day center, but I don’t know that she will ever feel comfortable there because she can see everyone around her. Hopefully, I can make tomorrow at least half as good as the Christmases she’s given me. Santa came and left presents for us both, but he had a hard time because neither of us really needs much of anything. Plus things she would have been excited about before, she can’t use or experience the same anymore. I’m going to have her try to direct me through glazing a ham. Wish us luck!

Merry Christmas everyone! 🎄

[jansjourney]

Some progress...

12/22/19

Sooo although mom still isn’t a fan of going to a day center, I didn’t see any tears this week. There were sad faces, whimpers, a little fussing, and silent treatments, but no tears. That’s progress right??? I will take it as progress. The tears are the hardest to fight against. She even smiled and waved goodbye to some people that work there on Friday. She was probably saying, “Yay! I’m out of here for a couple days! See ya! ✌🏽” I love that even through the sad faces and some sharp eyes, everyone there has still tried to find a way to make it more pleasant for her and figure out her interests.

Mom has had a couple rough days, which both unfortunately fell on days where friends were bringing her dinner. I think she has a hard time with her long days and just wants to go through her nighttime routine and get in the bed. I’ll have to keep this in mind. Some days when she’s been upset leaving the center, I’ve given her the option of dinner. Have something I planned at home or does she know something she wants to eat? She always chooses to eat out. While I know my cooking is nothing close to hers, I realized she and I ate out a lot together, so I’ll try not to take offense ���. She’s been able to direct me to whatever place she has in mind. Then either we eat in or take out. Whichever she is feeling. I still have no clue if she can read but anytime she selects a menu item, it has not had a picture, and she’s thoroughly enjoyed it. I’ll take it. She’s directed me to Longhorn, Cracker Barrel, Chick-fil-A, and Friday’s. A girl knows what she wants. Haha.

Communication remains to be the difficult area, but most of the time I can figure out what’s going on. We’ve got a pretty good connection, but words would soooo help to fill in those gray areas. She doesn’t want to work with this app that her friend loaded onto an iPad. I’m not sure if it’s that she doesn’t fully understand how it navigate or what the buttons mean. Or if she just isn’t accepting the inability to communicate. She very clearly tries to talk but only repeats the same two words in her vocabulary. Sometimes she realizes that what she says doesn’t make sense. But in those times where she really needs to tell you what’s wrong, she doesn’t understand why you don’t get it. I try to remain calm and explain that I understand she’s trying to tell me something but, unfortunately, the words don’t have the same meaning for me as they do for her. I’m not sure that helps but I am hoping to get her the message that I know something is wrong and I’m working to understand it. Hopefully it gets better in time.

I always try to end with some positivity if I can. So mom likes to sleep on the weekends. Practically all day. I’ve asked and I think it’s because she has such a full week, she just feels like she needs to rest. She shook her head for being sad and shook her head that the meds make her tired. So today when she finally decided to get up, I washed and did her hair and then we went out to dinner. One of her friends who I’ve always called my aunt joined us. It went really well, but the best part is when we were driving away, Ed Sheeran’s “Shape of You” came on the radio and she started dancing. She gave me her dancing face and was moving her shoulders to the rhythm and bobbing her head. That made me so happy. I haven’t seen her dance to a song yet. Made my heart smile 🥰.

Okay! Off to bed! Thanks for checking in and keeping up!

Allie

[jansjourney]

Still feisty

12/14/2019

Let’s start off with a picture to show how clear my mom can communicate with her eyes. She did NOT want me to take her picture, but I had to send thanks to someone from Miami for sending her birthday flowers, right?! Lol.

So tomorrow is mom’s birthday! She turns 65! She looks great right?! She’s made soooo much progress from the first few weeks. I want to wheel her back to the ICU and the neurologists from the hospital admission and say, “SEE!!! You don’t know my mom!” They warned me many times of the possibilities which was good mental prep, but I want to show how well she overcame this. She still has a long way to go, but she’s an inspiration.

Update: she still hates day center. That will never change. I’m not even sure her attitude towards it will either, but they’re doing amazing and they’re taking her facial expressions and nonverbals and staying positive with her. I keep explaining the why behind it all but she doesn’t want to hear a thing. She does like being home though. Doesn’t give any fight about that. Each day I feel like like routines gets better too. There are times when she will look at me like what in the world are you doing?! And there have been times where I turn over it over to her and see that she can complete some tasks that I’ve been trying to do for her. I swear she’s amazing 😊.

Gonna make this a short post. Just had to do one for the last day of 64!

💕Allie

[jansjourney]

Progress

12/10/19

Update, mom still isn’t feeling the day center, but I think she’s at least getting used to the idea that she has to go. She gives me a sad face each day but doesn’t make me feel horrible when driving away. The people are awesomely nice and helpful and they want to help her adjust so fingers crossed that it gets better.

Today was first evaluation at the outpatient clinic. The director of rehab who worked with mom a lot in the inpatient part rode on the bus to surprise mom. Sounds like mom was pleasantly surprised too. Also, I’m glad she rode because I feel like it helped mom know it was okay to get on the bus. I worried about that. OT evaluation was today. PT and speech are tomorrow.

So, while communication has been the most difficult part of mom being home, we do get by most of the time pretty well. I have no idea how the stroke has affected memory or the workings of her mind, but I can tell she still knows a thing or two around the kitchen. Many days we disagree about how to cook certain items. Like temperature for the oven, which rack to use, whether to use the timer, etc. I go for specific bag directions while she just knows what works. So this weekend, I bought some squash. Mind you, I’ve never cooked it, never watched her with detail, and didn’t know what to do with it. I just knew we needed some fresh veggies. So I put mom to the test. “Mom, can you help direct me on what to do to cook squash?” She nodded with confidence. And guess what! We did it and it turned out well. Pretty close to how hers turned out. Also, I’d like to say I’m getting pretty good at cutting onions, also from her direction. We may survive food after all! ...As long as I don’t take down the wrong chicken again. 🤦🏽‍♀️ this wekeend I did two crockpot chicken dishes. One was ranch chicken tacos. The other was bourbon chicken. Once done, I put them in the freezer. Today’s meal was supposed to be bourbon chicken, white rice, and squash. I took down the wrong chicken for the sides I had planned. We improvised and ate, but it wasn’t the way I wanted it. So later this week when I take down the bourbon chicken, I think I will pair it with yellow rice and a veggie. I told mom she had to teach me cabbage next, and she shook her head no. 😂 guess we are going for something canned. One fresh veggie at a time. Lol.

Thanks for catching up!

Allie

[jansjourney]

First Day at Day Center

12/4/19

So after a very hectic evening and morning trying to get everything in place and following up on medical statements, I was able to take mom to the day center. As soon as we got there, they greeted us and whisked mom away to join their daily devotional. She seemed ready. Here are smiles from this morning 💕

So I went through the whole work day, no calls, so that’s a good thing right? Went to pick mom up, heard she had a very busy day. After devotional, did hand weights, rang a bell in their choir, sat in on a game involving tv clips, had lunch and snacks, busy day! She got into the car and broke down crying. 💔 I’m hoping she adjusts quickly. I’m sure it was a lot to take in today. They’re going to work on communication cards for basic needs. Hopefully, it works better this time. Tomorrow will be her first full day there. Fingers crossed that it’s better.

[jansjourney]

Surviving home and a Happy Thanksgiving!

11/29/19

It’s been a busy past couple weeks preparing for home, but we are now here. Have been home for about 48 hours and we are surviving! I was very excited and nervous leading up to this, but now that it’s happened, we’re doing well. We came home the day before Thanksgiving which was nice for the holiday.

We are still learning to navigate the house some and figure out a routine, but it’s not too bad. I may have traumatized mom with the first shower simply because I wasn’t going quickly enough and it was getting cold. She must have forgiven me because she let me know she wanted a shower the next day. Yay, I didn’t do too bad.

Communication is still very hard. I wish I knew how to describe it but the stroke has definitely affected the brain signals where she hasn’t gotten past two words. Speech begins again in about a week and a half. Hopefully her month and a half break will give her the umph to try again. She made lots of progress before in speech with swallowing, and writing some. She can copy her name to try to sign. So hopefully next time she starts, they can focus on speaking. We’re figuring out enough to get through the days.

I feel like mom is ready to start the adult day center. She’s getting bored at home with me. Lol. She’s had me take her out each day for fresh air after experiencing cabin fever. We even went Black Friday shopping today. Waited until the afternoon when it’s calmer and when the deals were already done. She got some boots and 3 shirts from JCPenney. Mom starts day center in a little less than a week. I think we are both ready for our new routine. Her days will be full of activities and life while I go to work. I’m a little nervous about her treatment plan beginning, but she’s strong and determined.

There is so much to be thankful for! Mom’s progress so far has taught me more about what to appreciate in life, namely friends, family, and the will and strength to go on. Thank you all for continuing to check in to see how mom is doing! Thank you to those who have stopped in to visit or help out! Mom still shakes her head when I ask about people visiting but sometimes I’m not sure if she’s processing what I am saying because she gets excited when she recognizes familiar faces. She also has had her days when she is nottt up for a visit and it shows. 😬. Overall she’s doing well on this long journey we have ahead, and I’m soooo proud of her.

Love to our family and friends 💕

Allie

[jansjourney]

Home by Thanksgiving

11/12/19

Yep. You read that right. My mom should be home by Thanksgiving.

Unfortunately, insurance stopped paying a little over a week ago, so we have been working on discharge planning. I was initially hoping for inpatient rehab, but deep down I know my mom would not really be happy with it. VCU didn’t think she’d be able to be active enough for their program, and I decided against Sheltering Arms because of location and how much time/effort it’d require to go to doctor appts. So mom will be coming home, and while I am at work, she will be at an adult day center and outpatient therapy.

I am in a crunch doing research on day centers, home modifications, continuing doctor appts, etc., but I know it will all be worth it for her to sleep in her own bed at night. My goal is Thanksgiving just so we have 4 days at home together to figure out routines.

Will update when I get a chance.

💜Allie

[jansjourney]

Better update

11/2/19 Part 2

Today my mom was doing so well I had to come back to post. She was all smiles when I came to see her. It was lunch time and I brought her a kids size smoothie from tropical smoothie. She grabbed it and immediately started drinking. First sip looked like heaven. Lol. For lunch she had cod, broccoli salad, and potatoes. She ate pretty well.

She then wanted to go for a ride, and I hoped since she was in a good mood. It’d be a better experience than before. It was great. We drove in a huge loop but she looked so happy to be out and riding in the car. I brought up possible inpatient rehab in the near future and it’s benefits and she nodded understanding. We drove to Dunkin Donuts and got some donuts for the nurses and aids working today. We came back and as she rolled into the facility he had a huge grin because she was carrying the donuts for everyone. She wanted to hang out by the nurses station with all the other residents and I sat out there with her. I think she likes being able to hear the nurses conversations.

Pt came to get her and after a few demonstrations that she could bring herself from lying down to sitting up at the side of the bed, we finally got into the wheelchair to go to the PT Room. We had a quick complication because she grabbed her check and kept patting like her heart was beating fast. Went back to nurse and then came back to PT. It turns out she was anticipating walking and knew it wore her out a bit. She was eager to try with the walker though. The PT held her right arm in place and would guide mom’s right foot with her own to slide it, but with the assistance my mom walked the length of the PT room. Later on the PT told me it was 50 feet and the farthest my mom has walked. I was sooo happy to be there to help with the communication efforts since this was this specific PT’s first time working with mom. I also was able to figure out if mom felt she was okay to do PT after the heart scare.

I planned to spend many hours with mom and after 3 she was waving that I could go. I stayed for about two more hours knowing I wouldn’t be coming back later in the day. I was so happy to have such a great day with her. 😊

[jansjourney]

Quick update

11/2/19

Hi everyone! The updates have been getting a bit more spaced. There is a lot going on and some things are more personal, but my mom is doing well. Unfortunately, life is getting more and more hectic trying to handle everything. One big thing off my plate leads to 5 other things to handle. And then I get surprised with a new big thing.

Over the next month we will be figure out her next step. Her insurance has denied any further payments with very little warning, so it’s forcing the decision very quickly. I knew it would happen eventually, but it still happened sooner than I hope. The good thing is I do believe mom has progressed enough not to need a skilled nursing facility, but unfortunately, not quite enough for me to feel comfortable with her being at home. I will be discussing discharge options with the director of rehab where she is.

My thoughts are that inpatient rehab may be a good next step. One medical group here seems to have a really good stroke rehab program and some state of the art equipment that may switch up things for her and hopefully will push her further. I did feel like she was getting to the point of plateauing where she is, but I wasn’t sure if it was because of emotions of wanting to leave and frustration with some of the employees. I am very hopeful with her next steps. When she first left the hospital, inpatient rehab was not an option. She would have needed to be able to do 3 hours of therapy a day and she just couldn’t. She has progressed so much that I think that is what she is currently doing or close to it. More therapy and a switch up of the program and therapists hopefully will push her much further.

I am worried with her difficulty in communication and her emotional state. Overall, she just wants to go home. Who wouldn’t? She hates being dependent on others. She’s had emotional, hard hitting news back to back. She’s in pain. And she’s just tired of pushing through it all. She has remained determined, strong-minded, silly at times, loving at others, and expressive. But she’s got a lot on her. Being a speech therapist and having trouble communicating has been her biggest frustration. Plus she can’t communicate everyday things easily. It’s a yes/no guessing game constantly. She’s certainly made some connections where she is and has some nurses and aids who have really learned her and how to communicate well with her. I’m very nervous for her to start all over. Pray for us in these next few weeks. It’s going to be very busy and probably also emotional. Along with being packed full of doctor appointments.

As always, thanks for the love and support.