Sorry for those of you that check this blog daily in hopes that there will be new posts about Mom. The last few weeks have be a struggle for all of us. I have lost count of the days since Mom was admitted with her aneurysm, and for much of the last month, there has been little progress in Mom's healing. You are welcome to continue to check team bucklad as often as you would like. It makes us feel so wonderful to know that there are so many people caring about, praying for, and hurting with us as we go along this journey next to Mom. I will only be blogging about Mom when there is new news. So, it will continue to be random days that posts are made. Feel free to come and read...I may even start blogging a little about the Bucklad adventures along the way as Miles is growing and learning so much these days.
Yesterday was a big day. Chuck and I met at the hospital for a meeting with Mom's team of caregivers. This included all four therapists (speech, respiratory, physical, and occupational), her incontinence nurse, regular RN, pharmacist, and case manager. These meetings occur each week before paperwork is sent in to insurance. As I explained earlier, Mom can stay at the Select Care hospital on a week by week approval. This meeting allows all her caregivers to discuss where they feel Mom is in her recovery process.
Respiratory explained how they were trying Mom out with a cap on the trach. This was to test her ability to breathe completely on her own. The only oxygen Mom is receiving is through a tube that goes under her nose. The team wanted to see if Mom was able to clear her own airway as needed by coughing. It was strange hearing her cough for the first time. Up until now, her coughing was silent because of the trach. In a way it was like hearing her voice.
Then the rest of the therapist began to chime in. First, they asked about what we, the family, had observed. We shared little glimpses of awake time, smiles, and puckered lips. But, for the most part, we shared about the hours spent in her room with no response at all. They agreed. Then one at a time shared how they viewed Mom's prognosis as poor...
The likelihood of recovery is slipping away each day. And now, being six weeks after the strokes. The fact that there is no substantial action from her, is generally a sign that this may be all we get. This is how Mom is now. How she most likely will stay. It is not a vegetative state. However, it almost is. The doctor explained that sometimes this is worse. We have no idea what is going on inside her, if she is even "home".
Now, they told us that the rumors that came with her from the ICU about reading and responding was just optimism and doctors and nurses wanting to believe more was occurring than actually was. Me?...I believe that she was doing it all and was making gains. I also think that the last couple of weeks she has regressed some. So, I don't know if I fully am ready to "give up"...not that her current doctors are either. They are just sharing how it is.
What we need to look at now is what could be next.
--Mom is not coming home.
--She may live the next 30 years in the same state of mind she is in now
--She most likely will be moving to a nursing home...not a rehabilitation facility
--As a family, we may have to make a decision on continuing aid that keeps her alive. (feeding tube, antibiotics for illness like pneumonia, breathing machines if the need arises....) we may. It is not there yet, but the possibility is there that it could get to this.
I write this more broken hearted than I have ever been in my life. I have a hole that is so deep it takes my breath away when I stop to think about Mom. I cry most days and want to hide from people that reach out. I don't want to talk about the situation...in fact I don't want people to ask how Mom is doing...it just feels like people are trying to make casual conversation. At the same time I am hurt when they don't. I feel like there is not a person who understands how I feel (though I know that's not the case) When it's not sadness, it's anger. I get angry at innocent people I encounter daily at the store, work, etc. for no reason other than I have anger I just need to let out. How can you pretend that the world is not falling apart? Don't you know it is? Don't you know that nothing is ever going to be the same?...Now hand me my coffee, or move your stupid shopping cart out of my way!
So here we all are. As a family, we are hurting and all dealing with this differently. Our hearts are breaking as the stronghold of our family is slipping away. We have been slowly watching our Mom, wife, daughter, sister, and friend fight for her life for 50 + days. We are worn out and mourning at the loss of who we have always know her to be. We are fearful of the next steps. Most of all we are so empty inside. Hope is hard to come by. Faith is difficult to have. We want her back.