Now that I know God is definitely up there (as well as down here with us), I have been really trying to hand my life and struggles over to Him, because I so often feel helpless and clueless with making up Vince's care as I go along - which is what it amounts to. With God's help, I have taken excellent care of Vince so far, and I hope He keeps leading me - of course God will lead me; I have to pray that I will be able to know what God is leading me to do.
It's been a relief lately that I have been able to hand to God trying to get Vince to walk. Sometimes Vince can walk - with lots of help from me and our aide - and sometimes not. I was having trouble trying to push it too much, and just getting myself upset when Vince wasn't walking. What I have started doing is - every time we get Vince up to walk (which is only a few times each day), I ask God that if it is His will, to please help Vince walk. If not God's will that Vince walks, I will have him sit in his walker or wheelchair and ride. This has worked well for me. Sometimes, Vince does walk, and sometimes not. But I know I have handed it to God; so when I get to the point BEFORE I stress myself out trying to get Vince to walk, I have him sit and ride the rest of the way. This has worked much better for me; and it's better for Vince when I don't push and get upset.
Sometimes God wants to do things for us, but waits for us to ask for Him. And if not, we have to accept His will, because it is ultimately what is best for us. God wants us to be peaceful. So many times over the past years, it seems that He tells me "Stop struggling." I know I have pushed too hard, because I want Vince to keep whatever strength and abilities he can. I just never knew where to draw the line. By handing it to God, I can know where to draw the line, and know that I have done all I could.
Sunday, August 23, 2009
Thursday, August 6, 2009
Sick of Celebrities
I am so very sick of the celebrity culture we live in. I receive a magazine called Neurology Now, a neurology magazine for families dealing with neurological illnesses. I am grateful for the free subscriptions they give and the articles can be informative. But every issue features a celebrity on the cover - a celebrity who either has a neuro illness, or has a family member with one. It's always how so-and-so-celebrity copes with their illness or is a supportive caregiver to a family member. I'll tell you how they cope - THEY GET ATTENTION!! TONS OF ATTENTION AND SUPPORT AND PRAISE FROM ADORING FANS. Not to mention the tons of money they have to hire the best help and treatments.
I know that I would cope much better with my caregiving situation if I got only a fraction of the attention the celebrities get. I definitely feel better about myself and about my situation on the occasional days when I feel supported by others. But I and most of the country's millions of caregivers do not get much attention. We are sidelined and often isolated, feeling invisible. Not that I want to be on the cover of a magazine being praised for caregiving - honestly, I would be embarrassed. I just want to scream that there are millions of sick people and their caregivers who are not getting the attention they need; many of them cannot even afford decent health care.
So, I need to keep realizing that in God's eyes, I am as worthy as any "celebrity caregiver," even though I am virtually invisible to other people; and my husband is certainly as important as any celebrity with an illness although he also is invisible to others.
There - I said my piece - now I will return to my anonymity.
I know that I would cope much better with my caregiving situation if I got only a fraction of the attention the celebrities get. I definitely feel better about myself and about my situation on the occasional days when I feel supported by others. But I and most of the country's millions of caregivers do not get much attention. We are sidelined and often isolated, feeling invisible. Not that I want to be on the cover of a magazine being praised for caregiving - honestly, I would be embarrassed. I just want to scream that there are millions of sick people and their caregivers who are not getting the attention they need; many of them cannot even afford decent health care.
So, I need to keep realizing that in God's eyes, I am as worthy as any "celebrity caregiver," even though I am virtually invisible to other people; and my husband is certainly as important as any celebrity with an illness although he also is invisible to others.
There - I said my piece - now I will return to my anonymity.
Wednesday, August 5, 2009
Little Shop of Horrors
Last night half of one of Vince's upper molars fell out. This has happened before - he's lost a few teeth in the past years. This morning I called our dentist who is the sweetest guy and a really good dentist, certain that he would take care of it as always. Well, he didn't have any time to see Vince this week and is going away next week, so he referred us to an oral surgeon in our neighborhood - made an appt. for us at 11:00.
So, as my stressed caregiver mind feared that we were about to meet the dentist from "Little Shop of Horrors", my aide and I got Vince into the car and we arrived at Dr. K's office at 10:50, in time to fill out the reams of paperwork that are inevitable when you go to a new doctor. And yes, there were reams. After the receptionist made a copy of Vince's dental discount card (which wouldn't give us a discount there, anyway), I filled out pages of Vince's medical history (what I know of it), signed privacy statements, and pledges to pay the bill after services rendered.
Then we sat and waited...and waited...and waited. At 11:20, the receptionist asked if I brought a referral from our dentist - I said no, we were not there, and that our dentist made this appt. for us this morning. This was not good enough - so they needed to have our dentist fax a referral - more waiting time for us.
Meanwhile, they typed up another form for me to sign, giving permission to give novocaine and to extract Vince's tooth, making me aware that either of these procedures carried the myriad risks of infection, dizziness, giddiness, muscle damage, bone damage, jaw damage, high blood pressure, maybe even death - and the list went on. This is what happens from doctors being sued so much. I just ignored it all and signed the form, praying that God would protect Vince from all those hazards. I mean it's only novocaine and a tooth extraction, both of which he (and everyone else) has had numerous times with no problems.
Speaking of praying, at that point I took out my Rosary beads that I had brought along, and silently said a whole Rosary (20 minutes), and we were still waiting! Meanwhile, they asked me if it was Vince's #13 tooth that was the problem - well, I'm not a dentist, I don't know what "number" it is, but to look in his mouth, it's obvious; plus our dentist should have told them.
So finally they took an Xray of Vince's mouth, and then we waited some more.
Two more patients came in meanwhile, and were seen immediately. At 12:00, as I was about to suggest that we return on a day when they actually had time for Vince, they took us in! At this point I was about to cry, but we were finally going to see the grand, high, exalted, mystic dentist! (Actually he was an oral surgeon, which meant "lots more expensive!"). So after two antibiotic pills, Dr. K entered, and was actually quite nice - not at all scary - and he proceeded to start the job by 12:20. We were out of there at 1:00, $445 dollars poorer, and full of instructions for rinsing, soft food, etc. etc. etc., more antibiotics.
Dr. K also gave Vince a script for Vicodin in case he had pain - I won't fill it, because Vince never complains of pain from an extraction; and if he did, ibuprofen would suffice. Don't worry - I won't fill it for myself either, as painful as this caregiving stuff is. God is my Vicodin!
So, as my stressed caregiver mind feared that we were about to meet the dentist from "Little Shop of Horrors", my aide and I got Vince into the car and we arrived at Dr. K's office at 10:50, in time to fill out the reams of paperwork that are inevitable when you go to a new doctor. And yes, there were reams. After the receptionist made a copy of Vince's dental discount card (which wouldn't give us a discount there, anyway), I filled out pages of Vince's medical history (what I know of it), signed privacy statements, and pledges to pay the bill after services rendered.
Then we sat and waited...and waited...and waited. At 11:20, the receptionist asked if I brought a referral from our dentist - I said no, we were not there, and that our dentist made this appt. for us this morning. This was not good enough - so they needed to have our dentist fax a referral - more waiting time for us.
Meanwhile, they typed up another form for me to sign, giving permission to give novocaine and to extract Vince's tooth, making me aware that either of these procedures carried the myriad risks of infection, dizziness, giddiness, muscle damage, bone damage, jaw damage, high blood pressure, maybe even death - and the list went on. This is what happens from doctors being sued so much. I just ignored it all and signed the form, praying that God would protect Vince from all those hazards. I mean it's only novocaine and a tooth extraction, both of which he (and everyone else) has had numerous times with no problems.
Speaking of praying, at that point I took out my Rosary beads that I had brought along, and silently said a whole Rosary (20 minutes), and we were still waiting! Meanwhile, they asked me if it was Vince's #13 tooth that was the problem - well, I'm not a dentist, I don't know what "number" it is, but to look in his mouth, it's obvious; plus our dentist should have told them.
So finally they took an Xray of Vince's mouth, and then we waited some more.
Two more patients came in meanwhile, and were seen immediately. At 12:00, as I was about to suggest that we return on a day when they actually had time for Vince, they took us in! At this point I was about to cry, but we were finally going to see the grand, high, exalted, mystic dentist! (Actually he was an oral surgeon, which meant "lots more expensive!"). So after two antibiotic pills, Dr. K entered, and was actually quite nice - not at all scary - and he proceeded to start the job by 12:20. We were out of there at 1:00, $445 dollars poorer, and full of instructions for rinsing, soft food, etc. etc. etc., more antibiotics.
Dr. K also gave Vince a script for Vicodin in case he had pain - I won't fill it, because Vince never complains of pain from an extraction; and if he did, ibuprofen would suffice. Don't worry - I won't fill it for myself either, as painful as this caregiving stuff is. God is my Vicodin!
Saturday, August 1, 2009
Aide Woes
I knew it was bound to happen. After 3 years of stability with two home health aides - one for days and one for evenings, that's coming apart. The evening and Saturday aide had to take a job at a grocery store to get health insurance, so he still works for us, but needs to work for the grocery store about 3 times a week during his hours for us - the store of course calls the shots, because THEY're the one with the health insurance. I'm just a peon.
My nursing agency has gotten a replacement who so far has been able to cover the other aide's hours, but it is a new person, starting all over, doing things differently, and Vince won't walk much for him because he's not used to him.
Long story short - I'm stressed and depressed. I'm hanging on to God and taking it slowly, one step at a time, but I'm back to doing more of the work with Vince and it's very hard to have the new normal that I accomplished pulled apart. Of course that's life, and my problems could be worse, but hey, I live with a husband who barely moves or talks - as if that wasn't depressing enough to live with EVERY DAY.
I won't stop holding on to God, though. I know He has reasons and lessons for me, and I'm trying to learn them. I keep praying that Jesus will be the Lord of my mind, and not be badgered by all the annoying and depressing thoughts that are bombarding me. I will get over this depression - my depressions are on and off - it goes with the caregiver territory.
So just felt like venting - I doubt many people, if any, read this blog anyway. I have other things going on that are dragging me down also. I'll probably feel better tomorrow, when I have my two regular aides and return to a day of more order.
I did what I needed to do today, and had a nice lunch with 8 other support group friends, so I'm not dysfunctional - just beaten down and not looking forward to my evening with the third aide, who also did the daytime shift today, so I've had enough of this.
My nursing agency has gotten a replacement who so far has been able to cover the other aide's hours, but it is a new person, starting all over, doing things differently, and Vince won't walk much for him because he's not used to him.
Long story short - I'm stressed and depressed. I'm hanging on to God and taking it slowly, one step at a time, but I'm back to doing more of the work with Vince and it's very hard to have the new normal that I accomplished pulled apart. Of course that's life, and my problems could be worse, but hey, I live with a husband who barely moves or talks - as if that wasn't depressing enough to live with EVERY DAY.
I won't stop holding on to God, though. I know He has reasons and lessons for me, and I'm trying to learn them. I keep praying that Jesus will be the Lord of my mind, and not be badgered by all the annoying and depressing thoughts that are bombarding me. I will get over this depression - my depressions are on and off - it goes with the caregiver territory.
So just felt like venting - I doubt many people, if any, read this blog anyway. I have other things going on that are dragging me down also. I'll probably feel better tomorrow, when I have my two regular aides and return to a day of more order.
I did what I needed to do today, and had a nice lunch with 8 other support group friends, so I'm not dysfunctional - just beaten down and not looking forward to my evening with the third aide, who also did the daytime shift today, so I've had enough of this.
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