Exhausting Emotional Rollercoaster

 

I'll admit it; I'm exhausted.  A little physically, but mostly this exhaustion is on an emotional level and while I can try to take care of myself, let's face it I'm not.  I'm overwhelmed and drained.  But I am doing my best to move forward and to make sense of life; to that end I thought writing everything down would be helpful, so here I go...

I saw my mom at home on May 29th (Memorial Day weekend).  I brought my son and husband with me to help me out (my emotional support men).  Mom was not doing well.  She was rather lethargic and either hallucinating (thinking there was a bird in the house) or not perceiving things correctly (an orange cloth hung over the kitchen faucet was interpreted as a woman with orange hair).  She had been home from the hospital (where she had been diagnosed with dementia) for just over a week and was seeing a neurologist that Thursday (June 2nd; aka Prom night). 

As the week went on her mental status seemed to improve.  The neurologist tweaked her medications and added some new ones.  Things were so good that on Saturday, June 4th, she went out with a friend to dinner.  She wasn't thrilled with the food (no surprise), but she was so happy to be out and be with people.  Her caregiver sent me a photo of her before she went out and she looked GOOD.

Sunday, June 5th I had a LONG conversation with her.  Probably about 20 minutes, which is something we hadn't done in a LONG time.  However, that afternoon, a "thing" (in the photo it looked like a huge blood blister) had (suddenly) appeared (and grow).  It started to bleed, so off she went to the ER.

She was admitted and when I spoke to her on Monday she was still very coherent and calm.  I told her how proud I was of her; remaining calm in the face of the chaos that the hospital brings.  I think I called 3 or 4 times that day and each time she was clear and I tried not to be too hopeful.

Tuesday I couldn't reach her (https://bfthsboringblog.blogspot.com/2022/06/birthday-plans.html).  I knew that wasn't a good sign.   She was moved to CCU (not ICU like I had originally thought) for several days; not because of her leg (which was why she was brought in), but because of her dangerously LOW blood pressure (from the woman who always battled high blood pressure), and UTI (which I had no idea she had).  She was there for several days, during which I was only able to speak to nurses to see how she was.

By the end of the week she was well enough to go back to a "regular" floor and I headed down on Saturday to see my dad (it was his birthday) and visit my mom.  With my dad I took care of a few things that he needed my help with (making sure her bills were paid) and gave him sticky buns (which he loves) instead of a birthday cake.  My visit to my mom was chronicles here.

Sunday was not a day of rest (as we all hope for).  I actually attended two church services that day and both were interrupted.  The first by a text from my dad who wanted to know how things were and the 2nd by a call (that I missed since I had my phone turned off from the hospital.)  By the time I got home, my husband let me know that my mom had called the house (maybe a win for remembering the house phone number, but then it HAD been her phone number growing up and has belonged to the family since the 1930s/40s).  She wanted out of the hospital, only she was convinced she wasn't in the hospital.  When my husband tried to reassure her that she was there and being taken care of, she called him a liar and hung up on him.  Apparently she tried to call 911 to get someone to help her "escape" (this didn't work) and called friends whose numbers she remembered several times to try and help her get out.  It must have been so upsetting that one of the friends called us (my husband spoke to her) about it.

That evening I spoke to my mother and it was a most painful and horrible experience.  She pleaded with me to get her out of "there."  She begged me.  She said she would give me anything I wanted if I would get her out.  She said she would even go to the hospital if I would just get her out. If she stayed she would die.  She didn't want to die.  I tried to reassure her that she WAS in the hospital.  I told her I had been there the day before.  That I had met her nurse.  That she could trust the nurse.  I told her that I loved her.  She said she loved the "real" Beth.  I told I would talk to her in the morning.  She responded IF she was there/alive the next morning.

I didn't sleep well; no surprise.  Monday morning I did call my mom and speak to her, but I could tell she was still weak and confused.  That afternoon, I received a call from a social worker with palliative care in the hospital.  She was very helpful and we spoke for about a half an hour about my mother and her condition.  My mother does not have a living will (something we should have definitely taken care of a while ago; along with power of attorney, which I am still working on), so decisions about my mother's health care would be made by my father, or by me (if my father designated me as the point of contact.)    

My father and I did determine that I would be that person and both of us called the palliative care to let them know of this.  It seemed timely as I spoke to a nurse that morning who said that while my mother had eaten a little they were still concerned about her calorie count/nutrition and that they had started fluids via IV because there was no improvement.    In the early afternoon, I received a call from palliative care confirming that I would be the person making decisions when it comes to my mother's health.  With their guidance, I filled out a POLST (Practioner Order for Life Sustaining Treatment) form, determining what medical interventions would be done and what would not.  This was not easy, but I had done a lot of thinking about it (and yes, I prayed about it).  Based on what I had heard during the day my mother was not making improvement and these directions were necessary.

However, before dinner that night, my father called to say that he had spoken to my mother and she sounded lucid.  I called her after dinner and he was right.  She was sounding better.  The nurse that I had spoken to that morning even called me later that evening to say that my mother had improved and she had eaten.

I was hopeful when I called this morning, but she wasn't speaking very clearly and it was obvious that she was not trusting the staff.  As of yesterday she had moved to a private room, which I thought would be good, but she says it isn't.  And she's cold again, which is not a good sign.

So the roller coaster ride continues.  The ride has been going on for over a week and I'm emotionally and physically exhausted.  If I'm feeling this way, I cannot begin to imagine what my mother might be feeling and going through.  All I can do is try to find small chunks of time to relax.  (Like taking 10 minutes every couple of hours to go outside and just sit in the sun.)  It's not enough, but it is something.  For now, it will have to do.

For those of you who have read this; thank you.  This is not thrilling reading, but in some way it is therapeutic for me.  If you are going through something like this or have gone through a somewhat similar situation (because no two will be alike), please feel free to share your comments and thoughts.

Finally, I'd like to thank a good friend, who is a retired librarian, who suggested I read The Thirty Six Hour Day.  It's a great "guidebook" for dealing with these types of situations AND it reinforces my own thoughts and decisions, making me feel somewhat better.  God knows, we ALL need to feel a little bit better.