I was halfway through writing another post, all about Mom's hospice assessment on Tuesday, but after events of this afternoon, all of those details seem long and drawn out and unnecessary; quite honestly I just don't have the energy for it all. To summarize the events of the past few days, Mom was put on hospice on Tuesday. We were a little surprised that they finally approved her, given that she's still ambulatory (the reason why we were rejected before). This time, we had a great nurse who listened and looked at all of the evidence (food logs, weight logs, etc) and pled our unique case to the doctor. They both agreed that she was appropriate to receive the service and we breathed a sigh of relief; finally, we are receiving help! The past couple of days have consisted of nursing visits (by both the RN as well as the bathing nurse), social workers and finally, today, a visit from the doctor himself. We were hoping for some insight from the doctor of what to expect in the coming weeks and possibly months, and I think that even though we knew what we were facing, we were still caught a little off guard with the news he delivered.
To start with, Mom's eating and drinking has dwindled down to practically nothing. In fact, for the past 2 days she has only had a few bites and a few sips of water. She has been sleeping for long periods of time throughout the day; I'd guess that she's been sleeping close to 20 hours out of the day. We have noticed some blood in the urine bowl and dad wanted me to ask the doctor about that (dad had to work; the doctor was scheduled to come mid-morning so I told him that I'd be there to meet with him).
The doctor arrived mid-afternoon. I'm very thankful that my brother and sister-in-law were there with me to speak to him, for support and also so they could hear what he had to say. When he arrived, the three of us went back to Mom's room with him so he could see her and talk about her situation. He had already reviewed the detailed notes given to him by the nurse and we filled him in on her lack of eating and drinking over the past couple of days. I also explained that she appeared to have blood in her urine. He started to tell us that she was in fact, shutting down, but he hadn't given us any kind of timeline at this point. My brother and I brought up our concerns and reservations about leaving on our upcoming family vacation (we had planned to travel to Colorado for my cousin's wedding in a couple of weeks). At that point, he gave it to us straight. He told us that we should not go anywhere. He then told us that we were probably looking at 2-3 weeks, a month at most. The blood in her urine indicates renal failure and he said that within a few days, her kidneys would likely be shutting down. After that, it will be a domino effect with her other organs. He told us to contact any family members or friends who would like to see her and to tie up any loose ends. He stood with us in silence as we absorbed the information and held back tears. We asked some more questions and he answered them all, very compassionately yet matter-of-factly.
I have been feeling like the time is getting close, but I honestly wasn't expecting this news today. No sooner than the doctor drove up the street to leave than my dad drove down the street, arriving home from work. He asked if the doctor had any insight for us and that's about when I lost it. It was very difficult news to have to deliver. There was an initial shock and as you can imagine, this is very difficult news for everyone to come to terms with, but most especially my dad. After some time to let it all sink in, Dad asked me to call certain family members and friends for him. Please don't be offended if you didn't get a personal call from me; this has been a little overwhelming for me, too, and I asked some Aunts/Uncles to help me contact everyone. At this time, he really isn't up to talking to anyone on the phone. He gave me permission to give updates on this blog, but he is asking for friends and family members to please not make posts about this on Facebook; he would rather this be the one spot for people to get their information from. Also, it's just too hard for him to see these posts right now. While she is our Mom, our sister, our friend, she is his wife. As much as we love her, nobody can be hurting right now as much as my dad.
For those family members and friends who would like to visit with Mom, he is open to having visitors. I would suggest for those who want to do that to reach out to and coordinate with me so that we don't overwhelm Mom with too many visitors at one time.
Thank you all for your thoughts and prayers throughout this journey and especially now, during this difficult time.
I cannot even imagine, but my thoughts and prayers are with you and your family. It is difficult to lose a parent. It is harder when you watch them going slowly. You are incredibly brave and thank you for sharing.
ReplyDeleteOh Cassandra, I am so sorry. Praying for your family. Please let us know if we can help in any way.
ReplyDeleteI am so sorry to hear your bad news. Prayers will be with you, your dad and the rest of the family during this final steps of your mom's journey. We all got to know her through your thoughts. Have learned so much of what to expect with my own mom's journey that has only now started. Thank you so much for updates. Pray for your family.
ReplyDeleteCassandra if you need anything give me a call. I have had this journey Twice now. It is hard but they are in a better place, happy and carefree. It is a blessing for her even though it hurts those left behind. She would tell you that she is jumping for joy to know that soon you all can be more concerned with your lives than hanging around and being a caregiver for her. She will soon be able to see all through new eyes and with all those old treasured memories intact. You have been such a blessing to her and others by sharing this journey. Helen Lejak
ReplyDeleteOh sweet girl, I'm so sorry for your pain. It's hard to imagine the dreaded time is at hand. You and your family, and especially your dear Papa Bud, are in our prayers. We love you all ❤️ ~Teri Stayner
ReplyDeleteI am so sorry to hear this! I can only imagine the pain and shock that it brings. We love all of you and will pray that you have the peace you need during this difficult time. Thanks for helping each of us learn more compassion through sharing your journey. Love you❤️
ReplyDeleteI'm so very sorry, my friend. We'll be praying extra hard for you and your family. Love and hugs.
ReplyDeleteOh, Cass. I'm with ya and know exactly what your going through. I'm praying for God to be with all of you during this difficult and painful transition. LOVE TO YOU. Kim Genelle Johnson
ReplyDeleteWhat an amazing daughter you are to both your mom and dad. I know that the future is scary and I'm so glad that you have so much love surrounding you. I've learned so much through your blog. Thank you for sharing your journey.
ReplyDeletePrayers for your family during this time. I know we haven't officially met and I'm sure you have lots of family and friends and ward members ready to help, but if you need anything at all please let me know. Facebook messenger is a good way to communicate. Love to you all.
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