It has certainly been a merry-go-round this past month with each day bringing new stresses our way and yet we are dealing with them one by one. I will try to sum them up as I write this because each has its own teaching in it.
Daniel has his cat Alexi, for about 10 years. I will have to find a picture of him to post, these 2 are amazing friends and get each other through some trying times. What has been truly amazing is how much Alexi has endeared himself to most of the nurses. He has snuggled himself into their hearts. The poor 20 lb cat only has 5 beds in Daniel's apartment! The nurses/caregivers keep making more beds for him. He is very much a Garfield type of cat.
Well, Alexi decided he was worried enough about Daniel to take on all of Daniel's symptoms of his ilius. That cat would not eat, drink or poop for 2 weeks, 2 vet visits (which requires chasing said cat around the apartment to put him in the cage to haul his ass to the vet for check-up and listen to him pretend to be a mountain lion. He roared and roared and broke 2 nails clawing at the cage trying to get out! He HATES the vet!) Plus $400 later after 2 visits of which they found nothing wrong. They gave us medication for hairball treatment and antibiotics just in case something was wrong. He was just worried about his dad, Daniel. Scared me, there was no way I was going to tell Daniel his cat had cancer or was going to die, I just couldn't do that to Daniel. And thank goodness I didn't have to do that.
Alexi is feeling just fine now and sleeping on Daniel's bed with him as much as possible. Phew!!!!
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| Daniel and Alexi a few years back |
Mom is doing very well with her total knee replacement at age 91. My brother, John and my sister-in-law, Jackie are the best care givers ever and have relieved my concern and guilt of not being there to do my part. They have spoiled mom rotten and her healing has truly been remarkable. My brother John has been working from my mom's house and Jackie works at her school then makes dinner and brings it over to mom and John. I'm beginning to think when I have my nervous break down, I am headed to Indiana to my brother's house. I'm hoping they will treat me just as well.
They have also proven to me that mom lives in a lonely state of mind. Most of her friends are gone, either by death, distance, or by their minds. It's so sad. Just by having that daily contact, knowing someone will be there has changed her attitude remarkably. She is a very social being, and not having that social outlet any more can create a loneliness inside that can create a lot of sadness which eventually comes out as bitterness, rudeness and general nastiness. Which is exactly what she doesn't want. She wants attention and people to care for her. It's contrary for sure. Not having a mother since she was 8, and really not having a mother at all, has made her a very needy woman. But overall mom has done very well for herself.
This blog is about Daniel and not about my deep dark secrets of family issues.
On to our next issue. Please feel free to stop reading, delete or whatever.
Daniel started feeling his stomach acting up again. This guy has eaten nothing but broth, chicken noodle soup, crackers, Nilla or Vanilla cookies for 6 months. If he asks for a piece of cookie I give it to him, whatever he feels he can tolerate, I give it to him. (Still no request for Key Lime Pie). He went back to not eating. This continued for about 2 weeks. Through it all, when I would walk into the room he would smile and say, "Hi Mom". Hi sweetness, how do you do this day in and day out? How do you remain polite and pleasant? How do you tolerate nurses arguing with you over bullshit? How do you live? How do you do it? I simply don't know.
We have surgery scheduled for May 17th and I'm getting very nervous if Daniel can handle this or not. Maybe the first hospice group was right, maybe we shouldn't be doing this after all. Worries creep in and sleep can't be found for me. But the new hospice is right by my side. The harpist is playing to Daniel's body's rhythms and giving him peace. Daniel's personal massage therapist and the hospice energy healer are working on Daniel's body to get in sync the best they can. It all seems to be calming his stomach in time for surgery.
I get a call a couple of days before surgery to find out a nurse has reported he saw a bed bug on his arm. Later that day it's confirmed Daniel's apartment has bed bugs. His apartment complex has been fighting them in 2 or 3 apartments and I was thanking my lucky stars they hadn't gotten into Daniel's apartment. He's the perfect candidate for bed bugs.
It appears the night nurses, both of them, and 1 day nurse had experiences with bed bugs. had bites from them. I'm thinking that caregivers went into infected apartments then came into Daniel's room, it only takes one bug to cause an infestation. I think we hopped on it pretty fast and I really believe it was contained to our couch. I haven't gotten any bites and neither have other nurses that I know of and, man, we have been looking.
So, the day of surgery, I arrived at 4 AM to get Daniel ready for the ambulance, surgery went so well. I love both Dr. Haller, the surgeon, and Dr. Morris the anesthesiologist. They are a great team and have removed Daniel's trach granulation several times in the past and have this down pat. Dr. Morris would not leave Daniel's side. Once she came in she notice his new mustache, so did Dr. Haller, they both made him feel so special. They haven't seen him in a year and they do thousands of surgeries and yet took the time to really make Daniel feel like he was a movie star. Of course, we don't enter the hospice quietly. We usually have quite an entourage and now being delivered by ambulance which I prefer to call Daniel's limo, makes quite the statement.
I go into post op to suction Daniel, etc. and Dr. Morris was right there. I think she realizes just how sick Daniel is, and it was her way of saying good bye without saying it. I love her. I will have to write to her. Add that to my list.
While we were busy in surgery, Daniel's apartment was being steam treated for bed bugs now referred to as BBs. This is how the community at Eagle Watch works. When someone needs something, we gather and get it done as soon as possible without complaint and just do it.
His apartment was fully treated within 2 days, while we were gone his entire bedroom was done, and his couch was treated, wrapped in plastic and hauled out to be picked up and hauled off.
No more BBs have been found. However, I asked the owners of Eagle Watch, ASI they are based in St. Paul, MN to have professionals come in and do a thorough cleaning with 130 degree heat treatment. Now, I have created more stress.
Daniel will have to be out of his apartment for 24 hours, he has finally admitted he can't drive his wheelchair any more. I knew this but I wasn't going to say anything. So another ambulance (or rather, limo) is needed. I really wanted him to come here but I live in Florence, and Daniel's dad, John, lives in Missoula, so he will go to his dad's this coming Friday morning. I will take Alexi to my house. That's going to be an experience, the mountain lion arrives in Florence, holy cow!
Hospice has rented a hospital bed (it's already at his dad's house), Medicaid Wavier came through with paying for the ambulance, so very helpful since I just spent over $600 on cleaning Daniel's apartment for the first treatment of BBs in Daniel's apartment. Living on retirement isn't always a fun situation.
It does take a village but in our case I feel like it takes a town, in fact Daniel and I make up some names for his town, Marksburg and/or Dansville. Gotta find humor or you really do go crazy.
Fall out effect of BBs. Daniel never got a bite that I know of, but his bed is pretty much BB proof, they can't stick to his bed, thank goodness, again. However, his 2 night nurses have not been so fortunate. They both took them home with them. One threw out a sleeper chair since he can't sleep in a regular bed, that was a cost of over $3,000. The other one has truly suffered a PTSD break down. Hence I have had to do a night shift. I feel so horrible for this man. BBs get into you mental state of mind. Even reading this I bet some of you have started itching. It just happens. This poor man has been become almost manic about it and it is breaking my heart. I'm trying to get help for him and I'm not quite sure how to get the right help. I have offered money to both of them and emotional support. ASI has not been any support. People just don't understand how important it is to support everyone in this situation. They were working, doing their jobs and this situation arose. They did nothing to deserve this.
I am trying to help them but, I will admit, they may be taking their frustrations out on Daniel and that is not allowed, by me. As long as I have breath in this old body I will not allow my son to be abused by anyone in any shape or form. So, the mother bear appears and writes a harsh note with some positive spread through it, wasn't a teacher for 32 years with some crazy kids without learning some tricks. Of course, as always, the good nurses took it to heart while the ones who needed the lessons just tossed it aside. Enters Mother Bear in person, up front and personal. Example: When using a urinal with Daniel while he is lying in bed, there are some sharp edges on there, have you ever noticed that? If you haven't would you like to like down right here on the floor and let me show you how sharp they are? How would you like me to scrap and pinch your penis? Without an apology or any comment made at 4 AM? And tell you to go back to sleep. Oh, yeah, I'm stress and too bad you just have to take it because I'm stressed. Do you want to be treated like that? Or would you prefer to need to pee, ask me to help you, and I just won't respond because I'm pissed at the world? Well, lie right down here, and let me be your nurse.
I think we are all on the same page now, and things seem to be working a lot better and smoother. There are still a few ruffled feathers but I don't know how long Daniel has on this earth, none of us know how long we have. I'll be damned if I will stand by and allow this behavior on a very sick person, let alone my son, be treated like this. No matter what, we are a community and we will work as such. I feel like I'm a teacher again. Remember the rules, do onto others.....and yes, I'm gonna look you in the eye when it comes to Daniel. The thing is Daniel doesn't tell me, I will see something on him or another nurse will tell me. Grrrrr
Last night, I went in late to chat with Daniel and we had the best time just being us. When we started discussing hard topics he got very serious. He really loves his nurses. He is afraid to confront some of their behavior because he said I don't trust that some of them wouldn't take away my computer and take my trach off. I'm so vulnerable to all of them. Now, my heart is broken into pieces. Generally speaking we have fabulous nurses, but for that thought to even cross Daniel's mind is enough for me to really think about how he is being treated. I will have to visit more at unexpected times and be checking in more and more.
Can you imagine your child ever having that thought cross their mind? Or anyone you love? How does he greet me each and every time with "Hi mom, I love you".
I hope, if nothing else this blog will give you pause to be thankful for the beautiful day, thankful for your gifts in life, and thankful you are not threaten daily with someone having enough power over you to end your life.
Thank you for reading.
I love you all.
Peace be with you.
