Best Mom Ever Lost To PSP

My mom just passed away on April 19, 2012. She had a rare disease called Progressive Supernuclear Palsy. The disease took her fairly early. She was 62 years young. Today is her birthday. I wish she were here to celebrate, but the Lord had other plans for her.

I also lost my dad four and a half years ago. Mom's health really declined when he died. She was never really happy without him. I know she is where she wants to be now. Her spirit left in a hurry it didn't linger around as Dad's had. 

PSP is a very cruel disease. It is a progressive degenerative neurological disease. 

Mom lives in NC and had come to visit me in Florida on March 21st. My sister and her two babies were at my home as well. She lives in TN. We had it planned so we both could spend time with her. We had a few good days with Mom going out to eat, getting her hair done, and shopping. I could tell she had declined, but she was still bathing and taking care of herself. Although, she wasn't eating as she should. I bought her some Ensure and protein bars. She was drinking and eating them. They always helped her to gain her strength back. 

It was the 25th of March that she started getting confused and hallucinating really bad. We were planning on taking her to the doctor when she started choking on a protein bar. My husband had to perform the hemnik (sp) on her to dislodge the food. She would never really eat again, other than a few nibbles or drops of liquid. PSP causes the muscles to weaken and makes swallowing difficult. I knew now that Mom was in the later stages of her disease. I still held out hope, but I knew deep down what lied ahead.

That day we took her to the ER. We didn't realize once she sat in the wheelchair that she'd never walk or even stand again. We didn't expect her to deteriorate so quickly. She was in and out of consciousness for the week and half she were in the hospital. While there she had a feeding tube inserted, so she could be fed. The doctors were hoping her medications were causing all her problems and so were we.

Reality sat in and we saw she wasn't going to rebound. She was being released from the hospital. Either a nursing home or home with us. Mom always told us not to put her in a nursing home. I was going to a few days earlier because the doctors were talking rehab for her. That changed when we saw further decline in her health. I asked the doctors about her coming home with Hospice and that is what we did. Hospice was wonderful. We had 24 hour care for the first week. She had been taken off the feeding tube before she left the hospital because her stomach wasn't emptying. 

While home with Hospice Mom woke up and wanted her tea and to eat. We gave her little drops of tea and I made her some mashed potato. She took a few bites. Couldn't feed her much because she could aspirate. We decided to try her back on the feedings. She tolerated them very well. In doing so we lost 24 hour care and were down to a few times a week for an hour with Hospice. My husband and I were left to care for her. I never thought I could do this. I found strength through God I know. We took very good care of Mom. Waking up every 2.5 hours to give her meds and turn her. We were never even tired the next day. I know our angles were guiding us. 

We cared for her for five days and she spiked a fever. We stopped her feedings and 24 hour Crises Care was started again. She had a UTI and had aspirated. With Hospice we kept her as comfortable as we could. She passed on the third morning of having 24 hour care again. The signs were all there. We knew she didn't have much longer. We had already said our I love yous and goodbyes days before. 

We always hoped and prayed for the best. Although, there comes a time when you just hope and pray for your loved ones comfort and passing to take place. She had laid there for nearly four weeks fighting for her life. She had told us she wanted to live, but she also accepted what may be. As time drew closer we knew she was ready to go. She told me it wouldn't be long. "What wont be long, Mom". She told me, "Until the Lord calls me home". This put my mind at ease as I knew she were ready to go.

I took care of and watched both my parents die from a terminal illness. It isn't easy, but I am so thankful I had the opportunity to spend the last moments of their lives with them. They will always have a special place in my heart. I love them dearly. The best Mom and Dad anyone could ever ask for, were my parents. 

xxxLisaxxx xxxLisaxxx
41-45, F
4 Responses May 20, 2012

So sorry for your loss, the loss of aparent is very painfull. You can be assured you did the best you could for her. I too have lost both my parents and I'm an only child. One thing I know for sure love never dies. They both still love you and you still love them. When you going through tuff times in yrs to come you will sense they are very close to you.

Thanks mpde, I do sense they are close. Many supernatural things have happened since Mom and Dad have passed.

Thanks IncipitVitaNova! = )

I really feel for u cause my mom passed away on the 14 of April 2008. Although it has been a while now but the hurt although it has abated is still there. Just keep the faith and remember that God is always by ur side, so in ur saddest moments just call on him and he will see u through.

Thank your for the encouragement.

Sorry your mom and dad has passed away. May God be with you.

Thank you!!!