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I am so tired of being a caregiver.  And I have extreme guilt about it. 

My Dad passed away almost 4 years ago from heart disease, Parkinson's and colon cancer.  I took him to his Dr appointments, helped with keeping finances straight and a whole lot of other things.  My Mom was there for the everyday things, but I needed to be her support.  During this time my 21 year old daughter had a recurrence of seizures from a birth defect and was hospitalized for several weeks after surgery and then spent some time in a mental care facility due to brain injury.  After Dad passed, Mom's dementia got worse and worse.  I became her sole caregiver with her fighting me all the way.  She was taken advantage of by a neighbor and conned out of $30,000. This 'person' also brainwashed Mom into thinking that I was the devil.  Mom passed away in April of this year.  As I am grieving, I am trying to get all of the estate stuff taken care of.  I have an older sister and 2 brothers that all tell me that I am doing a wonderful job, and they can't help me because of either inability to cope with life or living out of state.  They really appreciate all I am doing and offered me extra money from the estate.  Big Deal!

 

Now I am caregiver for my husband, who was diagosed in September with stage 4 NSCLC.  He also has severe vascular disease and has had to have a toe amputated.  I love my husband very much and would do anything for him.  I am scared of what the future holds in the next year.  I see his pain and exhaustion and wish that I could make him feel better.  I spend most of the day when I am working thinking about lung cancer. 

 

Thanks for letting me vent.

 

 

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I'm so sorry to hear about everything you've been through. And I can really relate. I am a caregiver to both my parents. My dad has had 3 heart attacks, an angioplasty, and bypass surgery. My mom has stage IV NSCLC. I keep up with doctor's appointments as well as managing their finances. I, too, have 2 brothers who do nothing. I don't even get a "you're doing a good job" from them. My mom was diagnosed 5 years ago with LC.

All I can say is, it's rough. My dad is feeling good these days and is her main day-to-day caregiver now. My mom has dementia as well and is in a wheelchair, all from brain metastases. I help with her care and I'm my dad's main support. I'm kind of the "manager" and he's the hands on person these days. It sucks, it stinks, it's unfair- I guess there is just no way around that. It's ok to be mad. I also have guilt- I live out of state, and until my mom became unable to travel this past year, me living out of state was a good thing, because I was close to Johns Hopkins, where my mom got her treatments and surgeries. But now that there's no "advantage" to me living here, I have EXTREME guilt about living so far away. I constantly think I should move back, even though I wouldn't do so otherwise. I find myself thinking about all the things I'll be able to do "when this is over." Then I realize that when this is "over" it means my mom has died, and of course I don't want that and I feel SO guilty for having that thought. My husband tells me not to beat myself up, that I'm a human with human emotions. But it's hard not to. My life feels like I'm living under a dark storm cloud, never knowing when a big storm will come, but always under the threat of one and in the dark. I guess it's natural to wonder when I'll get to walk in the sunshine. Just don't beat yourself up too much. You've been through a lot. Take time for yourself. Today I got a pedicure- I can never truly relax and of course I did think about lung cancer during it, but at least there were moments where I did relax, and I was doing something for myself. You hang in there, you sound like a tough lady who can weather this storm!
WOW , You have had a lot of caregiving. When I get "out of control" I am screaming about the "WHY" do I have to be the "strong" one ? I have been a strong one all my life and I to get tired of it. My husbands doctor reassured him that I am strong enough to handle this. I wanted to SLAP him.

So we all need to vent.

Tamie
Tamie you sound like me! I get so tired of always being the strong, responsible one, too. And I, too, sometimes bristle when someone tells me "you'll get through this, you're so strong"- BUT, it actually helps when someone tells me that. I may want to slap them at the time, but later their words ring true in my mind and I know that I can get through this. Sometimes I just want to crumble on the floor and cry, though. We all need to do that sometimes and vent and scream. Thank goodness for LLL!
Thanks for your replies. Yesterday was a bad day, today is better. It is great that there are places like this where people understand and don't judge for stating how we feel. It is hard because my husband and I are fairly young (he 54 and me 46) there is no one in our circle of friends that have had experience with these type of issues, so hard to find someone to talk to about them.
I relate to the age thing, too- I'm 34, my mom was diagnosed when I was 29. None of my friends can relate at all, so LLL has been a lifeline for me. Glad today is better for you!
I can relate to being both the caregiver and the cared for. Before my diagnosis, I had cared for my own mother until her death, then my mother in law, sister in law, and then my husband off and on for the last 10 years since he has a failed 5 level back fusion. I now live my worst fear of 1. not being able to work, and 2. being incapacitated and having to depend on my husband for medications or regular meals, when he is unplugged for unscheduled periods of time. Being the family go-to person has it's ego perks, but it is very difficult and it takes a toll on you whether you know it or not. I want to shout from the rooftops - please take time to care for yourself, and don't get caught up in feeling guilty for taking care of yourself. I see this mostly in women, but there are men out there too. We are so used to pushing through any amount of exhaustion or pain of our own, to the point I/we can get to the point I'm now re-learning how to read my own body. I know I have to stop what I'm doing now only because my voice goes hoarse, not because I can readily acknowledge the other obvious things normal people seem to be aware of naturally. Friends and family had been warning me for years to put myself on the list of those worthy for extra care. I don't blame my disease on care-giving, particularly due to my own smoking so many years; however, the other big piece of avoiding any disease is keeping your own immune system strong to fight all the invaders we encounter every day. I hope you will take that to heart and put yourself on the top of the list without guilt - and know that the better you care for yourself, the better you can care for your loved ones. I'll close with one last thing that my best friend gave me and fits you to a tee. I truly believe there is a special place in heaven saved for you for all that you do. Just please don't wear yourself out so that you end up in that space before you were intended to get there. Please forgive me if I'm sounding preachy. My boss has suggested that finding balance in life could easily become my new soapbox, and I need to take care I don't become like the ex-smoker who accosts everyone with a cigarette that they see , LOL, she may have a point! Good luck to you you and to your family members. I'm sending up prayers as I type.
Oh wow. You have had such a heavy load! This is the kind of situation where I think sometimes there are no good words. I can't even imagine how exhausted you must be. Do you have any sources of support? Sounds like not so much from your family, but maybe friends or neighbors? A support group? A therapist? Anyone who can help carry your load?

Don't feel guilty about being tired of it. How could you NOT be tired of it??? It's hard enough to be a caregiver, but having to grieve two losses on top of it is just too much for anyone.

Hang in there.

Amy
There is a song running through my head that I sing all the time "Some days are diamonds some days are stone, Sometimes the hard time won't leave us alone" That is all I remember. Does anyone know the name of that song ? Actually just singing that in my head helps ? We are quite the group aren't we =))

Tamie
Google says it's John Denver. :-)

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