In the past few years, I've pretty much been in the "new normal" phase of caregiving - that is the phase where a well spouse has made some peace with the spouse's illness and has established a livable daily routine, with only intermittent crises.
The Lord has answered my prayers of years ago by filling my life with blessings, friends, and things to keep my mind busy and distracted from focusing on Vince's illness. So I go along pretty smoothly, with God's grace of course; however, every now and then I just get down, run out of steam, and I guess you'd just call that "depressed." It doesn't last long, and I have learned that it won't, so I don't get upset by it. That's when I stop and realize what I am really living with. I tell myself - Hey, my husband has a degenerative illness; he can barely move; he barely talks; and I have to take care of all his needs (with home health aides, of course, which can also be problems!) - we can't do anything together - NO WONDER I'M DEPRESSED!!! The miracle is that I'm not depressed all the time! And that miracle is by God's grace.
So if I feel temporarily down and out of commission, I cut myself slack because it is really very awful. Of course there are zillions of people with worse lives, but having a husband who always was and always will be practically lifeless is difficult!
I'm not depressed right now - I'm writing this because I think about it often, so thought I'd put it down. It's exercise time, and thank God I can still do that!
Friday, September 11, 2009
Thursday, September 10, 2009
Health Care Reform
Here's my two cents on Pres. Obama's speech before Congress last night:
I believe that the President is very concerned about our healthcare system and how broken it is, and I believe he is trying with everything he has to correct it. He came before Congress last night, looking like a father trying to appeal to his fighting children to come to some agreements rather than the stupid bickering they've been doing. The stony-faced opponents to healthcare reform looked like spoiled, petulant children who don't want to share their toys with their less fortunate brothers and sisters; they want what they want and don't care what "Daddy" Obama says - their minds were closed to compromise. They have lots of money and power and are used to getting their own way.
Obama explained very clearly all the issues involved and what he said made great sense; there was a lot of compromise which brought together concerns of both sides of the argument.
What needs to happen is a change of hearts more than anything. If people did "what Jesus would do," there would be less disagreement, because people would truly work toward what was best for everyone. I'm afraid our democracy has become a money-ocracy in which those with the most money can buy the public policies they want - and those policies are the ones which protect their wealth and power, and to heck with the hardworking people who can't buy the laws we live under.
I believe that the President is very concerned about our healthcare system and how broken it is, and I believe he is trying with everything he has to correct it. He came before Congress last night, looking like a father trying to appeal to his fighting children to come to some agreements rather than the stupid bickering they've been doing. The stony-faced opponents to healthcare reform looked like spoiled, petulant children who don't want to share their toys with their less fortunate brothers and sisters; they want what they want and don't care what "Daddy" Obama says - their minds were closed to compromise. They have lots of money and power and are used to getting their own way.
Obama explained very clearly all the issues involved and what he said made great sense; there was a lot of compromise which brought together concerns of both sides of the argument.
What needs to happen is a change of hearts more than anything. If people did "what Jesus would do," there would be less disagreement, because people would truly work toward what was best for everyone. I'm afraid our democracy has become a money-ocracy in which those with the most money can buy the public policies they want - and those policies are the ones which protect their wealth and power, and to heck with the hardworking people who can't buy the laws we live under.
Tuesday, September 8, 2009
GRRRR!
Sometimes - like right now - I think the thing I hate the most about Vince's FXTAS is when he won't open his mouth when I have to give him a pill or see if he has swallowed it.
He has started taking Ritalin to see if it will focus his mind a little and wake him up a little. We started with four days of the lowest dose - a very tiny pill which I think is harder for me to get him to swallow than a larger one. We've done this pill in the morning and that has gone down, and I think has made him walk better and be a little more awake. Yesterday I had to up the dose to two pills a day (working up to three, starting in a week). I can't say for sure that he swallowed either of the second pills.
I made the mistake both days of not making sure every little crumb from lunch was out of his mouth - if anything is in his mouth, he will have trouble swallowing a pill. So I put the pill on his tongue, give him water, and the pill is still in his mouth somewhere!! Then he won't open his mouth so I don't know if he chewed it, swallowed it, or if it's just crushed somewhere between his teeth. He won't open his mouth, no matter what I do. So I told my aide to give him more water, and went off to calm down and pray that he in fact swallowed the pill.
I have to remember to clear his mouth before giving him medication - not that that's always possible without making me furious at FXTAS!!!! I don't throw fits anymore - I just walk away and pray - but I still feel hatred for this insidious illness when Vince won't do something simple like just OPEN HIS MOUTH!!
I know I've complained about this before, and I know no one cares, but this is my way of diffusing my frustrations. If Vince does stay on this medication - if it does in fact ever help him - I'll have to find a better way to get it into him. These little pills are horrible!! GRRRRR!
He has started taking Ritalin to see if it will focus his mind a little and wake him up a little. We started with four days of the lowest dose - a very tiny pill which I think is harder for me to get him to swallow than a larger one. We've done this pill in the morning and that has gone down, and I think has made him walk better and be a little more awake. Yesterday I had to up the dose to two pills a day (working up to three, starting in a week). I can't say for sure that he swallowed either of the second pills.
I made the mistake both days of not making sure every little crumb from lunch was out of his mouth - if anything is in his mouth, he will have trouble swallowing a pill. So I put the pill on his tongue, give him water, and the pill is still in his mouth somewhere!! Then he won't open his mouth so I don't know if he chewed it, swallowed it, or if it's just crushed somewhere between his teeth. He won't open his mouth, no matter what I do. So I told my aide to give him more water, and went off to calm down and pray that he in fact swallowed the pill.
I have to remember to clear his mouth before giving him medication - not that that's always possible without making me furious at FXTAS!!!! I don't throw fits anymore - I just walk away and pray - but I still feel hatred for this insidious illness when Vince won't do something simple like just OPEN HIS MOUTH!!
I know I've complained about this before, and I know no one cares, but this is my way of diffusing my frustrations. If Vince does stay on this medication - if it does in fact ever help him - I'll have to find a better way to get it into him. These little pills are horrible!! GRRRRR!
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