Hospice

In February after realizing that caring for Mom on my own in the mornings was more than I could handle at 6 months pregnant I began to seek help. Mom required being cleaned every morning when she woke and was not very agreeable to me cleaning and showering her each day. I had read once that Alzheimer's patients became fearful of water. Washing Mom's hair became a chore I dreaded every few days. She is physically much stronger that I could handle and would become almost immobile as I tried to undress and dress her. Sometimes pushing me to leave her alone. There has been alot that I have been able to handle on my own, suck it up Megan is what I would think but I finally gave in to the realization that this daily battle is not one of those. After talking with the nurse at Mom's neurologist office she recommended us for Home Health.

We soon had an in home meeting for evaluation of  Mom to see that we qualified. I was quickly bombarded with nurses wanting to come visit, speech therapist and physical therapist. In our initial meeting I expressed my need for an aide to come bathe Mom in the mornings. The nurse told me we would be able to get one for maybe 3 days a week... I was willing to take it! After a very quick evaluation with the physical therapist who continued to marvel to me about the fact that Mom was younger than her and she couldn't believe how impaired she was, I almost kicked her out at this point just for going on about it!, the lady told me Mom couldn't be a physical therapy patient. Fine. Not what I was looking for anyway. However we were signed up for Home Health with the hopes of a 3x a week bath aide. The Nurse who knew Drew from growing up in the same town called me on the following Monday and asked to talk with me. She came over while Everett was napping and Mom was at Jan Werner and told me she couldn't get us out of her head all weekend and left our house the following week crying in her car about our situation. After talking with supervisors she had gotten us qualified for Home Hospice and wanted to know if that was something I would be interested in. I wasn't quite as taken back as I probably should have been by the world "hospice" but only because my Sister-in-law Carrie who is a home health nurse had prepped Drew and I for the possibility of needing it. A social worker came to the house to meet the nurse and I and listed out the benefits of Mom being on hospice. If we remained on home health and mom did not show signs of improvement, as she wouldn't with this horrific disease they would have to remove services from us in other words take away the bath aide. With hospice we would receive a bath aide 5 days a week to start and as long as Mom continues to decline in health we could remain on it indefinitely. We would also receive free medication sent to the house, a doctor and nurses on call 24/7 for all Mom's needs canceling the need to go to any out of the house appointments. Since I was about to have 2 babies in my house the less I had to get out the better. After discussing all the options and scenarios I decided this was the help I needed. Within days of Mom being assisted in the mornings by her aide I could feel my stress levels decrease. She began to become happier with me during the days and I could somewhat resort back to daughter a little bit and not caretaker. Mom has really loved the two aides who have helped her, one was with us for 2 weeks before she took another job, the other Stephanie has been with us 2 and half months and has a great rapport with Mom. They listen to Kenny Chesney in the mornings as Mom gets dressed. I meet them in the kitchen when they are finished ,with Mom's breakfast waiting, where the Stephanie sits and has coffee with Mom before the bus comes to get her for Jan Werner. If the kids are being cooperative in the morning we all sit in the kitchen together talking.

When I went into the hospital with Haven's heart scare at 34 weeks we were faced with tough decisions about what would happen with Mom during the time I go into the hospital to deliver Haven. It was apparent that we needed more help than what family alone could offer. Thankfully Hospice allowed for respite care for Mom. This would allow for Mom to stay in a nursing home for 5 days and nights while I was in the hospital. It took me some time to come around to the idea of having her spend any time at all there but knew it would be the only option overall while I was in the hospital. I researched nursing homes and met with some people in the field and landed on Ware nursing home. The respite care was an absolute blessing as far as having a place where Mom was cared for while I couldn't but it was also the most depressing time for me knowing she was there. Patrick came up and spent 5 days here, spending morning until night with her at the nursing home. Mom didn't get to meet her granddaughter until she was a week old, only having visited me in the hospital briefly the same day I delivered Haven. In my happiest times in life there is still a sadness that sets in knowing my beautiful 57 year old Mom cannot life the way she should be able to.

Mom continues to be excited each morning when the bus for Jan Werner arrives. She just about leaps out of her chair and runs to the door. Everett gives Stephanie a high-five each day before she leaves and runs out to wave "bye" to Mom and the other bus riders.  Sometimes I reflect on the tragedy that is Mom having to be on hospice at this age in her life but I am extremely grateful for the help and benefits it has allowed us! Mostly though I am in awe at how Mom is still bringing light and laughter to people even in her condition. Stephanie told me recently that Mom is her favorite patient and she loves coming to our house every day. Debbie, the driver of Mom's bus, has developed a special bond and love for Mom and they light up seeing one another in the mornings. Mom always tells her that she loves her... which is more than I get sometimes! On days that I am unable to make her smile there is someone else who can.

Mom can't tell me what she has done during the days at Jan Werner. She often comes home with glitter or food drizzled on her clothing. Sometimes they fix her hair in different ways or paint her nails. She is shuffling her feet a lot more these days and they are swollen by the time she gets home. Everett has usually just woken up from his nap when the bus arrives and he loves to go outside to meet his Nana. They sit at the table together and have an afternoon snack that most times involves Mom just giving her portion to Everett. We sometimes have dance parties while waiting for Drew to get home. These moments seem so trivial and routine at times but there will come a day when I will miss these moments and want to reflect on every single silly thing we did to make up our time together. Mom looks at Haven with such adoration, remarking on how sweet or precious she is. I was fearful of her holding Haven after the incident in the hospital with Everett and Mom's dramatic digression since then. However after watching Mom just stare at Haven for a while I sat her in a big chair and propped the Bobby pillow around her and gently placed Haven in her arms thinking this would make Mom so happy. She barely realized what she was doing. I kept having to tell her to look down at the baby as she was just staring at the wall in front of her. For all the joyful moments there are twice as many sad or confused ones. I grieve daily that she is unable to love on her grandchildren the way she would have wanted to. I grieve for my kids that they will never have the Nana she could have been to them. I grieve for the advice she is unable to give me in my parenting decisions although I am sure I would find it annoying or overbearing but I want it from my Mom. I see pictures of girls with their Moms on Facebook, pictures of grandmother's playing with their grandkids and I am jealous of the people that get to have those moments. But I am grateful for our moments, as fleeting as they can be, when she laughs at a joke or really looks into my eyes or says "I love you." These moments mean the world to me and I will hang on to them forever.