Discussion in 'Parenting News' started by TerryJ2, Aug 7, 2012.
Interesting article. When SO's mom moved in last year, it wasn't too stressful at first, but as her health started failing, and she had gotten to the point of being pretty much bed bound, it started taking a toll. I didn't think it was going to be too hard -after all I work from home so would be here to take care of her. We had not factored in that we would now have to lead a life of being on a schedule. Making three meals a day plus snacks twice a day, giving shots, giving out medications, being on the phone with clients when she needed a bed pan, not to mention two or three times a night with the bed pan, struggling to get her in and out of the shower. Because of my illness, and SO not being able to lift her to bring her out of the room, stress was slowly crept in. Because there was just he and I, our time out of the house together for any kind of one on one disappeared. We all have the same doctor, and he was the one who pushed to place her in a convalescent home - since she had a Mrsa infection he didn't want me to take a chance with my surgery, even though we gowned up, gloved up to take care of bathroom issues. SO ended up hurting his back really badly, and I ended up with a hernia just trying to move her to sit up or roll her on her side so she didnt get bed sores.
The whole thing really freaked me out as sooner or later we will be in the same position. It would probably have been better if we had family members to help out.
Her illness took a toll on her as well as she had always lived alone and done things for herself and wasn't a happy camper she was now so dependent-the longer it went on the more disagreeable she became. We didn't like the idea of placing her, but thought it would be better for her to be among people her own age - they have lots of activities and she does get out of her room to mingle but she still thinks she will be comming back home but neither one of us will be able to take care of her anymore.
I know, the hard part is that they all think they're coming back home ... so sad.
I'm sorry about the MRSA but it seems to have cleared up, right? And your husband's back, all too typical, sad to say.
Really, what gets to me is the sleep deprivation because of the medications and bathroom trips, and the constantness (is that a word?) of it all.
That was an interesting article Terry, thank you for sharing it.
I am not in that position right now. My inlaws do live in the apartment attached to our home but they are pretty independent. I go to dr.'s appts with them because they can't remember everything and I dish our fill's medications for him also but so far that's all I have to do.
I sure hope they can continue to maintain their independence as long as possible. It's hard on them to realize they are starting to need help. I don't mind helping but I could certainly see how it could become difficult very quickly when you are on their schedule and tied to their needs, not to mention no time with your spouse.
A difficult situation for both the caregiver and the receiver of that care.
Boy howdy. Yep. It didn't really start hitting me (that I noticed anyway) until Boo aged out of school. Nothing is simple anymore. There are no more "quick" trips to the store or ... anywhere. I had had dreams of working outside the home someday, or volunteering, or something, but realistically, that's just never going to happen. It's hard, and it's never going to end. husband is entering a phase of thinking "when we retire, we'll (insert ridiculous idea)" and it's ticking me off - tell me in what parallel universe it's going to be possible to travel on a plane or take a cruise with a quadriplegic kid/adult (on a blue-collar retirement, if we ever get there in the first place)? Is it going to be any more fun watching Boo for seizures in Paris or New York or on a ship deck??? I'm thinking not so much.
A lot of anger - definitely *not* directed at Boo, but just at the realization that my life will never be my own again. For some reason, while the kids were growing up, I was thinking it would be. Hah.
Wish I could remember where I read it, but I just read this week a story about the shortage of home health care aides. Generally, these folks are paid minimum wage, no benefits, and they provide a much needed service. The article was saying how the shortage is going to become really significant as the baby boomers become more infirm.
I don't think I'd be embarrassed at being diagnosed with caregiver syndrome, as long as it resulted in some meaningful help. Not sure it should even be considered a psychiatric diagnosis - it's just a fact of life for some folks, you know?
Sue... I don't know about how it is where you are, but here? If you're prepared to look after a severely disabled adult child, "the system" will give you either 3x 1week breaks or 1x 2weeks (your choice which) of 24/7 respite care. They figure the longer YOU can keep him, the less it costs "them", and 2 or 3 weeks a year is a small price to pay to recharge a caregiver's batteries a bit. It's nowhere near enough, but does at least give you a "vacation".
Insane - there is no "system" in IL, not in practical terms. Because he requires 24/7 care, he would have been eligible for institutionalization, but... yeah... not happening. Not only is there no funding, they're now shutting down "institutions" to save $$ (I'm not heartbroken about that), but there are no community services to take the place of that care. Plus, I'm more than a little leery of placing my nonverbal, totally dependent son in the care of others. We're on our own. The state *is* saving money in terms of caring for Boo - it hasn't spent a dime, and I don't expect that to change in my lifetime.
Sue, I know what you mean about the anger that you'll never have a regular life ... I just had a meltdown a cpl wks ago about that very thing. At the dinnertable, no less.
I get 8hrs a week respite care for my 7yr old son. It has been a life saver even at only 8 hrs a week. It gives us a break, my other children a break from his constant havoc that he has become. It allows us to go shopping, go to dinner, resemble somewhat of a normal family life with out all the contention, worry, stress that is caused around our house on a daily basis otherwise. I am empathetic to those families that need it as well that do not have that service that also could benefit from it. My son's respite is only supposed to.last for 1 year, I am going to do everything I can to extend that time since he has become more and more unmanageable throughout this last year. It can be embarrassing to take him to the store unfortunately. I am grateful for those precious 8 hrs a week and use those wisely, such as going to the store and other errands that would be a nightmare trying to do with him. It is a very unfortunate set of circumstances but I try to do the best I can with what resources I have.
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Excellent, Lost. I hope you can figure out a way to regain the respite care after it expires. It is invaluable. A true lifesaver, in every sense of the word.
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