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Angels19 Asked October 2013

Ever feel consumed by all of it?

I know I need sleep, but I need to ask something. Do you ever find that you are completely consumed with your role as a caregiver?

I finally got a break and came home today. It's been almost a month since I've slept in my own home. I was really thrilled to get here, and wanted to make the most of my time doing things I enjoy. I was going to have a leisurely shower, wash MY clothes, draw, etc.

Here's what I actually did:

I downloaded PDF's and read online articles on subjects that included: Medicare, Alzheimer's, dementia, care giving, stroke, depression in the elderly, and prevention of bed sores,

I went grocery shopping and ended up filling my cart almost completely with food for my mom. Not even half of the carts contents were for my household.

When I'm in a situation where I have an opportunity to socialize, why do I open my mouth and find that my contribution to the conversation is something "mom-based"?

I've been SO wanting this time at home, and am kinda worried about how even when I get my break, I can't seem to break free from my role of caregiver. Instead of being totally blissed out because I have time for myself, I am thinking things like,

"I hope she's ok"
"I wonder what she's doing..."
"I should've done .... (xyz)..."
"What if she's scared?"
Maybe I have time to drive back and make her some sandwiches."

*sigh*,
G'night.

Angels19 Oct 2013
Captain, I understand where you're coming from and think it's ridiculous how the gov treats us and how they treat the ones we care for. I was introduced to the cost of adult family homes and nursing homes last month.....(to call it "staggeringly high" just may be an UNDERstatement.) All of the people who were there to help guide me were awfully nonchalant when they explained how I'd have to "spend down her assets so she will qualify for Medicaid." Come again? I have a response: "Uh, NO." (I don't even have a definite diagnosis. Why would I sell my mom's home out from under her when she could improve? Makes no sense. I wonder if the majority of people that the hospital personnel talk to about these things are so "terribly inconvenienced" by their loved one that they are willing to go to that length to be free of them. How sad that is! We may never be given the recognition and help that we, as caregivers, need so desperately. I'm really sorry that you were treated as you were by that insensitive APS woman. Fifteen years ago, I was caregiver for my dad who was dying from cancer. Long story short, after he passed, I was in and out of court trying to prevent a relative from putting our mom in a nursing home. (My mom was about 62 years old, physically healthy, and only suffered from mental instability that was controlled with medication. I was dragged through the mud, lies were told about me, and I was made to jump through hoops to appease everyone. To this day, I still save every single receipt no matter how small it may be, to prove that I am acting in my moms best interest in all matters financially. Oh boy, I could write a book about that two year legal battle. In the end, I guess I won (if anyone really "wins" in such a scenario.)

mskit, you sound like you were glimpsing at MY life when you were talking about yours! I had to seriously RUN everywhere I went because my window of opportunity to be out of the house to get things done was extremely narrow. By the time I would get back in the house I was literally out of breath and breaking a sweat. Just like you, the guilt is tremendous. I know it's imperative that I take a break. I've found that I'm just no good to my mom if I don't. But even armed with this knowledge, I can't seem to stop that unwanted guilty feeling. I'm learning to work through it. You are right, margarets, taking time out is vital. And I suppose that those of us who feel overcome with guilt would do well to remember that when we take time out to recharge our batteries, we're doing so for our loved one as much as we are for ourselves. We're no good to them if we let ourselves become broken down emotionally and/or physically.

I, also, have a relative that is absent in all of this. It's just as well, because I'm exactly like what you wrote: feeling that no one will treat my mom with the love, patience, respect and dignity that I will. Which isn't even a true or fair statement. All that is, is my own fear finding its voice. (Something else I'm working on).

Jinx4740, you hit the nail straight on when you compared this to motherhood. I actually have been thinking that very thing. Growing up, my mom was either negligent or abusive toward me. Some people think I'm "extraordinary" to care for her now in light of this. And yes, maybe it is strange.....but to me, she is SO much like a child right now. And who in the world deserts a child who needs them?

Keeping you all in my thoughts and prayers. I have found much solace here at this particular forum. You're all the most wonderful, selfless people here. Thank you!

Jinx4740 Oct 2013
Motherhood can be like that. Maybe the part of you that feels guilty for getting away made you do all that mother-focused stuff. The rest of you knows that you do more than enough - except that there's always one more thing you could be doing!!!

When I find myself obsessing over any one problem, I discover that I am avoiding "working on myself." I avoided a midlife crisis by marrying and having a baby at 44. That eliminated any questions about what I should do with MY life for 20+ years! Is there something scary but possibly exciting lurking in the back of your mind?

But don't overthink it. It is an absorbing (life-sucking) job.

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margarets Oct 2013
I haven't been there myself, but I can see how it could happen. It's all the more important that you force yourself to take real, proper breaks. And not just a few days a month, but shorter breaks every day. E.g. mid-morning is YOUR time to have a cup of tea, be quiet for a bit and do some drawing. That 15-20min is super-important for your well-being. Take a similar break in the afternoons, maybe do some simple yoga moves or stretches - whatever your thing is. Sometimes it takes a lot of self-control, but it's worth it.

mskit1212 Oct 2013
I can relate to you, my every thought or move is based around my dad, he lives with me and I plan everything around him, until recently I could leave for an hour or so but I would wait til he went to bed for a nap because he usually naps for a couple hours, but if I got stuck in a long line at the store, or stuck in traffic then the wheels would start turning, is he up? what is he doing? ect...
dad is on hospice care and if the nurse mentions something new or if dad is showing more decline then I'm on the net searching what this means, what might happen and on and on. I'm always looking for answers/solutions. alzheimers sucks
I have used respite care twice, every 3 months I can put him in hospice house for 5 days, the 1st time was horrible for me, I felt so guilty and did nothing but worry, you know its like taking care of your child and you think no one can care for them they way you do. but it helped so much and our hospice group is wonderful, and I plan on taking advantage of it. I've been the sole care giver for 7 years.
this is the hardest thing any of us will do and only other care givers understand, my sisters think its nothing and don't come around and I'm ok with that because I will cherish the memories that we have made along this journey.
may we all find the patience to continue and peace for our loved ones

anonymous158299 Oct 2013
i spent 6 years dealing with the same problem. at work in the early afternoon ones thoughts turn to mom at home alone. it indeed consumes you and as the elder declines further the time away from home declines with it. i wish the govt would acknowlege our loss in income and give us some tax relief or something. instead an aps lady hatefully told me i should be paying some bills while living with mom. just brilliant.( poorly thought out. )

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