Several have asked for an update on Adrian/us..........

[Joanne]

I don't know what to say. :confused:

 

His disease is such that even when he takes his meds (which are symptom reducers, not curative), he still has acute episodes. Last year, when the acute episodes started, he had more good days than bad. Now he has many, many more bad days than good. And the good ones? He's still severely compromised.

 

Earlier this week, he was doing well. He was able to navigate the Houston Metro system (our poor public transit) and get to his Doctor's visits. The last 48 hours, he's been increasingly disoriented. This episode is like some others, when he does interact (instead of sleep), he is like an obstinate toddler.

 

Ever have a 200 plus pound, 6'1" obstinate toddler?:glare:

 

The doctor was pleased with his weight reduction (over 50 pounds) but it's because his appetite is greatly reduced; he can't sustain positive lifestyle changes right now. He's just not mentally/emotionally able.

 

He was hospitalized once for suicide threats.

 

Adult Protective Services has been trying to help, but we make too much for medicaid. We made just enough to cover bills, and now, without child support, barely that.

 

It IS possible that if during a hospitalization (which are inevitable), a doctor recommends him for a nursing home, we may qualify for "nursing home medicaid with spousal impoverishment protection". :lol: That, essentially, means that he'd get medicaid for living in a nursing home and that I'd get at least a portion of his disability income.

 

Right now, he doesn't need *medical* help daily. But most days he needs help with household chores, hygiene, meal preparation. The kids are at their Dad's until July - and even when they come back, they should not be responsible for that. I HAVE to work full time plus. I am also considering a part time job where I used to teach in order to keep the kids there (my dd would lose her 9th grade credit if I put her in public school.) Not having child support was the kicker for that. My days of one job have been very short. :auto::tongue_smilie:

 

I've looked into home health care and it would be about $300 a week. I can't afford it, especially now. And, frankly, it's not "enough" for him in terms of interaction and people.

 

That's my update. I wish it were different.

[Country Mouse]

:grouphug:

[Slartibartfast]

:grouphug:

 

I can't imagine, I will keep y'all in my prayers. :grouphug:

[LG Gone Wild]

I am very sorry.

[MariannNOVA]

:grouphug: Continuing to life you and Adrian and your family in prayer.

[frugalmama]

:grouphug:

 

I say this very gently and as someone who had to make this choice myself. Would it work financially if you were to quit your job to care for him? It might lower your income enough to then qualify for medicaid {and possibly food stamps} which in turn would lower the bills quite a bit if they are medical related. It is a leap of faith to do this though. :grouphug: And in some places you can be paid to be his caregiver, which would replace some of your lost income and still allow you to homeschool. Or you might be able to get a caregiver through medicaid which would allow you to do some type of part time work without worrying about him.

[*Inna*]

:grouphug::grouphug::grouphug:

[Teachin'Mine]

:grouphug::grouphug::grouphug:

[jelbe5]

:grouphug:

 

Praying for you.

[elegantlion]

:grouphug: I'm sorry.

[Twigs]

:grouphug::grouphug::grouphug:

[OLG]

I am so sorry. This is terribly difficult - my cousin lived it with her husband. Nothing I can say will make it better but prayers for strength dear lady.:grouphug:

[Reflections]

:grouphug::grouphug:

[EKS]

:grouphug:

[BlessedMom]

:grouphug::grouphug:

[LittleIzumi]

:grouphug:

[Night Elf]

:grouphug: Oh, that sounds so hard! I'm so sorry! :grouphug:

[lmrich]

:grouphug:

[Jean in Newcastle]

:grouphug::grouphug::grouphug:

[Impish]

:grouphug:

[ThisIsTheDay]

:grouphug::grouphug: I'm sorry, Joanne. Praying.

[Alessandra]

I can't begin to imagine how terribly difficult and disheartening this must be. I am so sorry.

[Tress]

I'm so sorry! :grouphug:

[Big Buckin' Longhorn]

:grouphug::grouphug::grouphug: My goodness! You're both going through so much. Your entire family is in my thoughts. :grouphug::grouphug::grouphug:

[Amber in AUS]

Thankyou for the update. Thinking of you and your family.

[freerange]

I wish I could say something that would help.:grouphug::grouphug:

[Mommyfaithe]

:grouphug::grouphug:

[Melissa in Australia]

:grouphug::grouphug::grouphug:

[MamaT]

:grouphug::grouphug:

[Lizzie in Ma]

I am so sorry Joanne. :grouphug::grouphug:

[lisamarie]

:grouphug:

 

And in some places you can be paid to be his caregiver, which would replace some of your lost income and still allow you to homeschool. Or you might be able to get a caregiver through medicaid which would allow you to do some type of part time work without worrying about him.

 

:iagree: My aunt is home bound and just recently started receiving in home help through a regional organization. She has someone come in twice a week to clean, wash her hair, and take her to appointments as needed. My mom has been doing her shopping for years and she is now PAID to do aunt's shopping. If there is anything like this in your area, you might be able to get paid to be the caretaker for Adrian. I want to say my mom gets $10/hr, but that's $10 to do something that she has been doing for free. Just a thought.

[elfgivas]

:grouphug::grouphug: how i wish it were different for both of you! :grouphug::grouphug:

 

ann

[KS_]

I'm sorry Joanne :grouphug::grouphug:

[Joanne]

Originally Posted by frugalmama

 

 

And in some places you can be paid to be his caregiver, which would replace some of your lost income and still allow you to homeschool. Or you might be able to get a caregiver through medicaid which would allow you to do some type of part time work without worrying about him.

 

:iagree: My aunt is home bound and just recently started receiving in home help through a regional organization. She has someone come in twice a week to clean, wash her hair, and take her to appointments as needed. My mom has been doing her shopping for years and she is now PAID to do aunt's shopping. If there is anything like this in your area, you might be able to get paid to be the caretaker for Adrian. I want to say my mom gets $10/hr, but that's $10 to do something that she has been doing for free. Just a thought.

 

I appreciate the suggestion.

 

But I can't. I would not be a good caregiver to Adrian. I'm a staunch and relentless medical advodate. I'm good at managing him when he gets unreasonable and his symptoms are escalated. But I am not made of the stuff to be a good caregiver for the elderly (which is what a lot of his stuff presents as). In addition, there is too much baggage/history for me to be as kind and nurturing as he deserves. I don't even feel adequate to be the *wife* he needs now, but I'm the one he's got.

 

And, frankly, I am too selfish. It's quite possible that "selfish" is too harsh a word. But, regardless. My adult life has been hit with a huge "it's not fair" stick. I've sucked it up and dealt the best I can. For decades. One of the things I realized in the challenges (and solutions) of the last 7 years is that I need intellectual stimulation, important, meaningful work, and a setting that is remote from family life. In addition, I need to build a career (and repair credit, and build some savings, and maybe even get a house........). I fully understand that there will not be any retirement for me; I will work until I can't work. That's just my financial reality. I am 46 - I can't put my career on indefinite hold with the course of Adrian's illness.

 

I value WORK. Tremendously. I value work as a woman in a way that is intense. I want to model professional work to my kids.

 

Adrian would love having me as his caregiver. I'd wither and die figuratively. I have BTDT in a marriage and I can't/won't again.

 

I appreciate the suggestion - I really do - but it's not a match for me.

[Mrs Mungo]

Joanne, sometimes there is no best option, there is just doing the best you can. You are doing that. I am sorry you all are going through this. :grouphug:

[Truscifi]

:grouphug::grouphug::grouphug:

[FaithManor]

I appreciate the suggestion.

 

But I can't. I would not be a good caregiver to Adrian. I'm a staunch and relentless medical advodate. I'm good at managing him when he gets unreasonable and his symptoms are escalated. But I am not made of the stuff to be a good caregiver for the elderly (which is what a lot of his stuff presents as). In addition, there is too much baggage/history for me to be as kind and nurturing as he deserves. I don't even feel adequate to be the *wife* he needs now, but I'm the one he's got.

 

And, frankly, I am too selfish. It's quite possible that "selfish" is too harsh a word. But, regardless. My adult life has been hit with a huge "it's not fair" stick. I've sucked it up and dealt the best I can. For decades. One of the things I realized in the challenges (and solutions) of the last 7 years is that I need intellectual stimulation, important, meaningful work, and a setting that is remote from family life. In addition, I need to build a career (and repair credit, and build some savings, and maybe even get a house........). I fully understand that there will not be any retirement for me; I will work until I can't work. That's just my financial reality. I am 46 - I can't put my career on indefinite hold with the course of Adrian's illness.

 

I value WORK. Tremendously. I value work as a woman in a way that is intense. I want to model professional work to my kids.

 

Adrian would love having me as his caregiver. I'd wither and die figuratively. I have BTDT in a marriage and I can't/won't again.

 

I appreciate the suggestion - I really do - but it's not a match for me.

 

 

:grouphug::grouphug: I'm praying for both of you!

 

Joanne, you are doing the right thing. My mom took care of my grandmother for years with no help in order to keep her out of a nursing home. I lived too far away to be of assistance and had the littles which meant I would only be of occasional help when I could be around. My sister was in college and then grad school. It seemed like the "noble" thing to do, but my mom paid for it in spades with her own health. Here she is at a time in her life when she should be able to enjoy some living and instead, I'm still raising children and worrying about my mom possibly needing my help before I even get the last one off to college and how to manage all of that. Additionally, my dad had to hire help in his business to cover what mom used to do, she didn't get paid for taking care of grandma, and it set them back financially because she wasn't drawing a paycheck. Due to that, there montly income now for retirement is not enough and so they keep working when they shouldn't be. Sigh.....

 

For you own health, sanity, and your children's future financially stability, you are doing the right thing. Many short term solutions only complicate matters in the long term. The one thing I do know for certain is that nothing is solved by ruining the health of the caretaker.

 

So, so, sorry!

 

Faith

[Harriet Vane]

:grouphug: I'm so sorry that it is so hard. :grouphug: