Update on my dad (and me) long AGAIN
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First, I want to thank all of you for your kind words, encouragement, and prayer. I gained some real insight reading your posts.
I went to the hemo. appointment today. I do take my dad to MSTI St. Luke’s and he sees a Dr. Zuckerman there, who is supposed to be the best in MDS in our area.
My dad’s appt. wasn’t with Zuckerman, it was with a different NP (different than the first one we saw). I have to tell you, I laid it on the line. I said I was “losin it” so to speak and I needed some clear direction and answers. She gave them to me.
I asked about starting Arnesp back up. She explained that the Arnesp wasn’t helping him go further between transfusions. I asked about Vidaza and she said the reason Vidaza isn’t considered a suitable treatment for my dad is because of his co-morbidities (sp) and his overall weakness, etc.
She explained prioritizing his treatment and that although his iron overload was getting high, it as not in his best interest to treat it right now because they want him to work on getting stronger, and the sickness that comes with iron overload treatment isn’t appropriate right now. Eventually, he will reach a point where the doc will have to treat, but in the mean time, they are concentrating on strength, and comfort.
It was laid out before me that my father’s disease is progressing.
I asked for support group help, which I will seek, but I also thank the Lord for the support I have found here.
My goal and focus has changed. If he is transfusion dependant (really about every week to 10 days), then I am encouraging my father to change the way he lives his life (and I hope the psy. therapist will help him do that). IE: Take advantage of the uptimes (post transfusion energy) and work on strengthening your body and mental health and enjoying a ride in the mountains with my husband, or going on a short fishing trip.. Accept when your body is weaker and needs rest and relax through it.
I wanted so bad to believe that he was going to get better, but the truth is, he isn’t. He will have some better times and some worse ones.
I hope that he can find a place where he can appreciate that taking care of himself to the best of his ability, which includes accepting help from others (like physical therapy, assistance in the shower instead of not taking one) will improve the time he has left on this earth…whatever amount of time that is.
I read the posts of those of you who supplement, watch your diet, avoid possible infection situations, and I just want to go nuts trying all of that with my dad. But when I look at the reality of the situation, he isn’t interested in that at all. He would do it for me if I sat in front of him 24hrs. a day and coaxed him into it. I can’t live my life that way.
He sees his psych therapist tomorrow and I am going to tell her that seeing my father every three weeks is not suffient. I have said this before, but she didn’t agree.
I will tell her that my father needs to get some support every week, his depression is severe, and it affects his ability to strengthen physically. He**, it landed him in the hosp. for three days dehydrated and under nurished.
As an aside, just to give you an idea of his attitude, I made it very plain to him that he would have to leave the Rehab place this week if he refused therapy the way he did yesterday (this morning, he went…we are calling him in the morning to start him off refocusg on physical therapy, maybe he will fixate on that
). I told him when someone comes in to take him to therapy, if he says no, no thank you, or kiss off, those all count as refusals, so he must make every effort to go.
He then asked “What if I’m sick?”
I asked, “Are you sick?”
“No”
“Would you lie and use that as an excuse?”
“IF I had to to get out of if and still stay here”
I made it perfectly clear that not only was that dishonest, it was crying wolf and then none of us would know when he was really sick, which is serious. I also assured him he wouldn’t be fooling anyone, they catch on pretty quick.
Needless to say, I got a little grumpy.
But this is what it is.
God Bless each and every one of us.
Prayers for all of us,
Karenk
ps. Someone inquired whether or not I had siblings to help, the answer is yes, but no. My brother died in a car accident 14 years ago (he was 20) and my sister recently was committed to the state mental institution (she is a paranoid schiz.). She fell apart literally on August 12 of this year the same day my mother had a stroke (she went delusional when her husband told her about my mom). My mom spent six weeks in rehab. and is doing ok(the week after my mom’s stroke, her companion ended up in the same rehab place for 4 weeks. They got out 2 days apart). My sister spent two months committed and is out somewhere in the state of Idaho. She had not made contact with me and I don’t know if she is being med. compliant or not. Before I picked my dad up from Chicago in late Aug., I traveled 100 miles every other day to see my mom in hosp., get her laundry, visit, etc. I continued to do that after I got back with my dad although only every three days. So, my life has been in a state of chaos since then. Unfortunately, I come from a pretty non-functioning family. Although, I have a good relationship with my mom, my relationship with my dad and sister has always been strained. The baby of the family, my brother, was raised by me his last years of high school, and I miss him terribly. He was so fun loving.
I have spent years and years breaking the cycle of dysfunction that is my family history. Now it is back to visit. I will remain strong to what I have learned through my faith, therapy, and loving husband and children.
We just happen to be on a bumpy road right now.
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