I have been trying to make a post for almost a week about where I am mentally and emotionally at this point and I just haven't been successful. So maybe I start from the last entry and see where this goes.....
I have been taking on the care for my mom since Feb. She wasnt incapable of caring for herself but she definitely needed assistance. The last stroke affected her mentally and physically more than before. She needed assistance to walk and comb her hair. She wasnt capable of fixing a full meal but could make toast, or a quick sandwich and she could do things that would allow her to sit and do them. But she did need reminders on taking her meds and what meds to take and when. The biggest issue for her is that she didnt just bounce back like she wanted and that was starting to cause her some depression. I always reminded her that this one required her to take her time. She isnt a burden to us and we always got her back. But about 2 weeks ago she started to take a downturn. she began sleeping more, like all day. At first I thought it was depression but later the first day I felt her and she was burning up. I took her temp and she was running a pretty high fever. I got it down with a little persuasion with fever reducer and cold compresses. The following day she was still sleeping but not eating and no more temp. I thought maybe a cold. She hasnt gone out anywhere but I do go outside and at the time we were dealing with some really cold temps. Over the weekend she kept getting weaker and not eating except applesauce with her meds. I knew I would contact her dr on Monday to see when she could get her in. I did call the dr and it just so happened her physical therapist also came by. Even though she was in no shape to do the therapy she wanted to check her. She felt the same as I and also contact the dr for next steps.
When the dr followed up he wanted her to go to an urgent care. My mom had 1 other virtual dr appt that day with her endocrinologist. When that was over I got her ready to go. On the way her dr called back and said give all the reports from the dr and the PT she wanted her to go to the ER instead. Mama wasnt happy but she went. We then found out she had COVID. My heart sank. My mom was already an at risk patient with the strokes but she also has diabetes so that just made it worse and one reason that we have stayed in and away from people. Because she wasnt in a critical state the ER sent her home and her dr followed up with more instructions including getting a pulse oximeter to monitor her oxygen. I got it and that evening her oxygen was dropping with her activities. But when she was still it was in an acceptable range. Because of this she refused to go to ER. So I did what I could to keep her comfortable but I knew she was not getting ay better. But we had another virtual visit with her dr for the next day as an ER follow-up. I knew what the dr would say. but that evening on Tues was rough. My mama cried off and on all night. She was not comfortable and in pain. She wasnt resting well. I just needed to get her to the follow-up so the dr could convince her. When the dr did see her it was completely what I expected. She said you need to get her in an ambulance. I told her she would need to convince my mom of that because she isnt going until the dr says she has to. nd that is what happened Wed afternoon. EMSA came and took her off to the ER. No visitors because she is COVID positive. Cant even go to waiting room because we have been exposed.
And here is where the battle started. My mom was in no condition to have her phone that day. So her husband and I kept it until we knew she was better. I spoke with her sisters and explained this to them and they were all ok. The dr called on Wed to get background info because my mama was completely out of it. He then said that she showed signs of slight pneumonia and that she was in diabetic ketoacidosis. Basically her blood sugar was so high it was turning her blood acidic. I told him that was not the case less than 12 hrs ago and wasnt even close to it. I told him I had not checked her blood sugar that day but she was in so much pain it made it hard to. He said she will go to COVID ICU for her diabetes and they would continue to monitor the pneumonia. I gave everyone an update about this. As we get to day 2 of her hospital stay the nurse and dr say her blood sugar is back to normal but her mind is still out of it and the pneumonia is advancing. Another heart drop for me. They also said she appeared to have anxiety and was agitated and pulling off the little bit of oxygen they were giving her. I told the nurses she has never been to hospital let alone ICU without someone there with her all day to offer support. She was probably feeling that because she wasnt really aware of where she was or what was happening and there was no family allowed so she couldnt see a familiar face. Mama and I had discussed before she went to the hospital how scared she was. She felt like she was going to die or that the hospital wouldnt be able to save her. I spent a couple of nights assuring her that we wouldnt let that happen and would stay on them about her and make sure they did everything to help her. I understood why she felt that way given her prior conditions and how serious this one had become. Anyway, her husband and I felt that when she was more aware and could operate a phone. That would help her feel better when they got her coherent.
Well her siblings, specifically her sisters were not liking the idea they couldnt talk to her. It started very simple with trying to force me to take her phone up there to her. I knew from talking to the nurses she was in no condition to talk to anyone or operate a phone. I tell them this much but it doesnt seem to be enough to convince them. I got a message that it is beneficial for her which I agree but they 'suggested' I take the phone up there. No me being me I just replied hear you. But they couldnt see that was my I am done with this response. So I got back a message that said basically take her the phone. So I respond with I understand but dont you think we have considered these things. Been thinking about it since when she was admitted but she is incapable of answering a phone let alone holding a convo. Plus everyone calling up there when they feel like it is a disturbance and can only agitate her more increasing her anxiety. My polite way of saying still not doing it. Well these crazy people (not what I called them at the time) decided they would just call the hospital themselves. They called to try and get details on her condition, speak with the dr and to get the nurse to take her the phone so they could talk to her. When the nurse told me I laughed and then apologized to her. You see it isnt the first time they have tried this which is why my mama specifically listed myself and her husband as the only people to get her medical info. The first time they tried they were going to transfer her to a hospital across the country because they thought the dr wasnt treating her right. Little did they know that she was the one not following orders. It was when she first found out she was diabetic about 8 yrs ago. She has been totally insulin dependent from the start but she was not taking the insulin when she should and she didnt modify her diet. To the hospital she went.
Anyway, the nurse nor dr provided them with the info and they told them that no she cannot talk mainly because she cannot talk. She cant hold the phone to answer it and she wouldnt be able to hold a conversation in any way. She cant even tell you if she is in pain or cold. Since that didnt work (mind you one is a former nurse so she knew it wouldnt work) they decided another way. They went to her husband to have him add one of them as authorized people. He asked me and I said my mama wouldnt want that. She didnt want that which is why they never have been. He said you are right and didnt do it. There is a reason they went to him and not me because I would have said no and ignored anything else. By Friday of last week, mama's condition was getting worse. The pneumonia was advancing and she was requiring more and more oxygen to keep her oxygen levels up. Now my mama is stubborn. She hates thing over her face. So when they had her on the oxygen through her nose, she would rip it out. Nurse said ok let's do the mask. Foolish nurse because she took the mask off too. Oh and she would try to get out of bed. They had to put her in restraints in order to keep her still. Internally I know she was pissed at them but it kept her from taking mask off. But even with that and giving her anti-anxiety meds she was getting to the point that she needed the ventilator to get the oxygen at the right levels. The nurse and I talked about this Friday and she was certain that Saturday would be the day. Well my aunts heard this and decided that they needed to come down and hold a prayer vigil in the hospital parking lot. Cool let's do it. Saturday morning my mom is put on ventilator. I reach out to the aunts in the afternoon to see what time they are going because of course I want to go but my nephews are in town because they are having a small baby shower for our town's people and I need to go to that as well. The time comes for the vigil, 2pm. My sister gets there first and said when she got there the first thing they said was did you bring the phone. She said um no I dont think she did. the looks of disgust they had lol. My sister was done with them. When I get there no one mentions it except my sister. Apparently while I was driving they sent the message of should you bring her phone. Good thing I didnt see it because she is fully sedated so the answer is a Heck NO. But we do the prayers and I am preparing to leave and my eldest aunt says we are going to get her a phone and take it to her. I said nothing. Again I dont care about their need for a phone and contact. I leave and come back later with my nieces, nephews and my siblings. We do our own thing. In the middle of that I get a message from an unknown number that this is how I can contact my mama. Ummm, excuse me? My blood was boiling. Her husband called me to say he offered them a conference call with him and the nurse to ask whatever they wanted and he would do the evening check-in. Great you do that and let me know. But then he saw the text and he flipped. we were both done. I went to my car angriest I have been in months and then I went off. Apparently my nieces and nephews never seen that side of me but they didnt know what was going on. I told my sister I was going home. My head hurt, my blood pressure was probably through the roof and I couldnt take anything else. I needed to decompress before I completely lost control.
At the end of Saturday, her husband had raced to the hospital, blocked any access except me an him from anyone. So much so the hospital will deny she is a patient. Well that ticked them off and no word from them for remainder of the night or Sunday. I had to let it go. I remove myself from any conversations that look like they talking about bringing her a phone. I must stay well for my siblings and the grandkids and her husband. He is older but sometimes he doesnt understand and doesnt really ask. I did get a call yesterday from the youngest aunt who had her own list of things we must do moving forward. My response was a simple ok. Those kinds of decisions should be discussed with my mama and her husband and I can tell you neither of them take kindly to other people's demands either. My sister said when my mama wake up she is going to cuss her sisters out. I told her I wont be relaying any of these events to her while she is still healing and I hope they dont either because she needs to be focused on her recovery. The frivolity of those conversations are just that and she needs no additional stress. Our intentions were to never hold any information from her siblings but we had to do what we felt was best to make sure she got the rest and care she needed without being bothered all the time by people with good intentions. They received all information good or bad or no change everyday in great detail. They never asked any question that I hadnt thought of and covered in my texts to them. I knew this hospital had a plan in place in case the situation was terminal that would allow a visitor. If we needed to allow people to communicate then we would have someone physically there to help with that.
But as of today all is calm in my soul. Well, at least how I deal with them. My mama is started to get reduced from the ventilator so she can start breathing on her own and maintaining her oxygen level. I know that is a process but I pray every day that she improves no matter how big or small those steps are. Because aside from the drama with my aunts, we are all trying to deal with this. We are all trying to remain positive and be strong for someone else, our siblings or the kids or just so someone has a level head about them. I will not lie. I cried every day from a few days before she was diagnosed with COVID until yesterday when we finally got a decent report from the nurse. As the oldest child, I have been tagged to update all the family and that can be tiring. My mom has 3 living sisters and 3 living brothers. That does not include friends and her first cousins or my elder cousins. Before I could give them updates, I would cry for about 5 mins. Only then could I gather myself to send them what wasnt the best news every day, 2 times a day. Sometimes I think that people who are supposed to be your biggest support system forget that. Like I am here if you want to talk but this has to be equal ground. There are situations not in your control and you must learn to accept that and how to move forward with no control. I had to learn that lesson with some other situations with my siblings and it was a hard thing to do but I had to. Luckily, I did have support outside of them. Her husband has been great. He asks my opinion but I always let him know he has the final say as her spouse and I will go along with it whether I agree or not. I also have 1 friend who has been a great support for me. I probably worked her nerves as much as I work the nurses nerves but those late night texts, the virtual car ride alongs were good. I could express myself or just be silent and not have that offend anyone else.
The question I always dreaded was the how are you doing. Now dont get me wrong, it is a normal question to ask but the truth is 99% never really want to know the real answer. What it inevitability meant is they wanted to tell you their hurt was greater than yours. Or there are the times they used it to try and manipulate the situation to affect your decisions. Or they really dont care at all but they have to ask. One of my uncles asked me how I was doing and I said ok. He then asked if I took the COVID test. Now I had already told them I had and would have my results before the weekend which I did. I then appeared with all of them at the hospital. If I were positive do you think I would have been out and about with others potentially exposing them? It didnt make sense to me so I didnt answer. I may have still been a little angry from the previous day as well lol but still. If there was a concern on me being positive then you shouldnt have been within 6 ft of me and we were on more than 1 occasion that day. Then there were the questions of how she got it. The honest answer is we have no clue and may never know the answer. In the entire time I was there my mom had 2 visitors aside from her nurse and she approved those visitors. None of them tested positive either.
This has been one of the hardest times to deal with. My grandmother's death and staying by her side while she transitioned is the other one. I never want to go through either of these again and I hope that if I am in the support role in the future I look back on both of these events and remember how I felt and can do what I wish others had done for me. I still have fears because I know this virus is crazy and things can change in a second but I also remember that mama will fight. Her body may initially betray her but her desire and faith are what she uses to hold on and not give up. I cannot wait until I can see her face and ultimately hear her voice. Soon we will do that and I will breath easier and sleep more peacefully. The recovery is going to be a long road but we are here for it.