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I'm having yet another irritating day in my continuing saga of Caregiving alone. I use that term loosely because my Dad is in a ALF. Hats off to those that have their loved ones in their homes.
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Today I recognized that I have not had a weekend to myself in 15 months!!! There was a time when I would get a little relief about every six weeks when one of my Dad's other daughters would pick him up and take him to our hometown for a weekend. After an incident where I was unfairly cursed out by her bratty daughter and called selfish because I couldn't answer her phone call due to working a second job, those visits came to an end. Now I have to do EVERYTHING by myself.
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My life is not my own. I work two jobs to cover the expenses that Dad's VA benefits don't cover when the income from my first job should cover me and then some. I don't go out. I don't shop. I don't have time. My life is either working, visiting Dad or trying to get a little rest which is often punctuated by frequent calls from Dad.
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My weekend routine is the same. Get up early (because there's h*ll to pay if I'm not at the ALF to pick up Dad by a certain time). Take Dad to greasy diner and eat the food because he's going to have TONS of comments if I decide not to eat that unhealthy, greasy crap. Run errands with Dad (lift scooter, lower scooter, check oxygen tank, SLOWLY navigate store... rinse, repeat). Clean Dad's bathroom (the once a week from ALF cleaning staff doesn't cut it. He pees on the floor and it stinks!!!). Rush to gym and squeeze in a workout. Rush to grocery shop for self. Head to part time job until 11 PM.
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Sunday, get up early to cook meals for week (trying to lose the weight I gained from caregiving). Rush to do personal laundry. Go pick up dinner from one of three restaurants Dad eats at. Buy or prepare something I can eat. Take meal to ALF. Eat with Dad in his 90 degree room. Clean up. Go to part time job until 11 PM.
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This is EVERY weekend. During the week, I am working my full time job, two days of which I leave early to go to my part time job until 11 (8 AM - 11 PM workdays). I visit Dad on one of the days that I don't have to work the part time job (and clean his bathroom) so that leaves two days for me to try to ... I think it's called rest?!?!
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Is it bad that I miss my weekends? I would just like a whole weekend Dad free and work free. I don't want to have to wake up early to eat food I don't like. I miss my Sunday morning hikes. That was my life before. Get up. Hike. Eat greasy food I wanted. Get a massage. Take a nap. Prepare food for the next week and do laundry.
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No more. Now I just work and take care of Dad. I have NO help. Even evil step mom/ ex wife has cut back their Sunday visits because going out with Dad is becoming more tedious.
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Why did I get (bad word coming ) BURDENED with this? I'm sure I'll miss some things when Dad is gone, but how much longer can the old man fight? He's miserable! I'm miserable!!
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I'm just tired.

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Tiny, I can relate to your perfectionist tendencies...I find myself struggling for balance when it comes to my Mom. How much is enough?

Blackhole, this resonated with me:

1.) What was Dad doing when he was your age? [Exactly what he wanted to do, from what I can glean.]
2.) To what extent did Dad care for his aging parent or parents?

I actually occasionally ask myself this question about my Mom.
1. She wasn't taking care of her parents at my age, in fact Mom was never the sacrifice herself type. She did what she wanted, within reason anyway. I'm sure she thinks she made plenty of sacrifices for me growing up, but she certainly made sure she had a full and fulfilling life as well.
2. She never helped her brother take care of her father.
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That's great news about the support group! I think it helps to learn from each other and just to know that we are not the only ones who are facing these challenges.
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Hi SendHelp! Thanks for the info. Dad has completely maxed out on his benefits (Disable Vet, Aid and Attendance, etc.)

And yes, Sunnygirl1... the fact that the expectation is SO high just substantiates that this is NOT a healthy father-daughter relationship. Thankfully, I have found a support group (Codependents Anonymous) to help me work through my issues and learn to set some boundaries.
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I'd also consider that loving parents don't insist or expect their adult child to give up their life in order to care for them. Regular visits, reasonable phone calls, cards, etc. might be expected, but, total, all encompassing devotion would be frowned upon by most parents, if they were thinking clearly. If they aren't thinking clearly, then they don't realize how disproportionate it is. That's why the person who can use proper judgment needs to be the one who calls the shots.
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Tinyblu,
The VA has an Aid & Attendance benefit for care (if one served at least one day in an authorized war.
The funds for this benefit can help you, such as having the ALF staff clean his bathroom 3-4 times a week, or daily if needed.
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Oh Tiny. If you need some help setting boundaries and making changes, keep these 2 truth-tellers top of mind:
1.) What was Dad doing when he was your age? [Exactly what he wanted to do, from what I can glean.]
2.) To what extent did Dad care for his aging parent or parents?
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Thanks for the tough love everyone. Yes, I feel guilty every.single.day. I struggle with being "enough", and 34 years of caregiver programming is hard to break.

I'm working on dealing with myself -- that's who gets in the way. The perfectionism (we had H*LL to pay if we made a mistake -- I can SO relate to Michael Jackson's struggles as a child), the resentment... the frustration... then the guilt for feeling those things.

There's that voice in the back of my head that says "He can't help it he's sick", but that's not necessarily true. He smoked for YEARS despite the doctor's warnings, so the COPD is on him. Scientific studies link dementia to a lack of oxygen to the brain and prolonged alcohol and cigarette use, so that may be on him as well.

He didn't ask to lose his sight in the Navy, but he NEVER took advantages of the programs and resources offered through the VA to make his life better. Instead, he just parked himself in front of the television and started complaining. He then would find vulnerable women to drive him around and do his bidding until he emotionally and physically abused them to the point where they escaped. So... maybe it is his fault.

As a result of the above, his other children don't have anything to do with him. Not that I blame them. By the time I was born, Dad had stopped drinking, but as I understand it, his alcoholism contributed to him being a really bad Dad. He pretty much abandoned his other kids, so I don't blame them.

As for working two jobs, that's another internal battle for me. The VA (free) facility is too far away for me to visit regularly (more guilt), and it seems "institutional". I'd never forgive myself for "putting Dad away". The facilities that accept government funding (Medicare) are atrocious in my area. Completely depressing, so I have him in a private pay facility. The cost of the private pay ALF exceeds his monthly VA benefits, so I pick up the $300 difference as well as cover other miscellaneous costs (toiletries, groceries, etc.)

Yes, I enable him and I know I'm my own worst enemy. I just need to find a backbone. I can still here him in my head "You're all I've got kid..." AAARGH!!!!!
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Why are you working two jobs to pay dad's expenses? Stop.
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You put yourself in this situation and now it is time to stop. You are working two jobs to pay for AL. That is your part. Why are you taking him out everyday and doing things that are provided for by the AL. Drop that to once a week. Why are you letting him dictate what you eat? You are an adult, eat what you want. He is used to getting his own way and you allow that. Push back. "Get sick" next weekend and see what happens. Stop answering the phone every time he calls. Once you are an adult your parent has no say in how you live your life. Start thinking of yourself for once. Don't be angry with siblings that aren't 'helping'. They made their choice and you made yours. (And I am saying this as an only child). This is between you and your father. Take back your life. Write down what you are willing to do...and that is all you do going forward. Is there a reason he is not getting medicaid to pick up the difference in care costs? Why are you stuck paying for this?
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Gershun - I love what you said here because it's a point that's overlooked. It's something I've also expressed in relations to my unhelpful siblings. Love is a verb. Sharing is caring. People tend to frame the issue in terms of each sibling's relationship with the parent, and how we each have the right to make our own decisions about whether and how much to help. But I think that misses a large part of the point. Siblings are showing how much they care about the caregiving sibling by choosing to involve themselves with the parent or not, especially when the caregiver is clearly struggling and asking for help. That caring or lack thereof will be remembered long after the parent's days are gone.
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And for goodness sake, no one can make you eat what you don't want to. Let him be angry.......... It must be wonderful to be those unhelpful siblings who breeze through life with not a care in the world cause dutiful sister takes on the burden. Do they at least thank you. Not that it would mean a lot. Occasionally I would get a thank-you as they rushed off to their busy lives. Thank-you means squat in situations like these. I've said it before and I'll say it again Love is an action, not just a word. If your siblings are not helping then they are not loving. Simple.
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tiny - make different choices so you have time to yourself. Dad may not like it but you are entitled to time to yourself to do what you want to do. There is no rule that says you have to do everything that pleases dad and nothing that pleases you. You need to focus on you and your needs more.
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You can just stop visiting for a couple weeks to give yourself a break. Why are you working to jobs to pay for him to be in assisted living and taking him out to eat? I would recommend that you quit paying for him to live in assisted living. It's fine to treat him to a meal once in a while but not on a regular basis. That would force him to make his own meals or God forbid (if they have one) go to the dining area to eat. Let someone else pick up the slack.
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I agree with all above.....You NEED to take care of your self and if dad is upset so what he's not alone and he won't starve to death. If I were you I would only visit once a week sounds to me like the time you spend with your father isn't quality time. Let your sisters do some of the work make them! I am one of 4 and the only one taking care of our mother but she isn't demanding of my time I can't imagine going thru what you are doing.. This coming weekend go to the movies and get your hair done and then eat what you want for a change.. You can't help dad if you've been beat up.Be good to yourself you both will enjoy your visits more.
sissy
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I agree with all above.....You NEED to take care of your self and if dad is upset so what he's not alone and he won't starve to death. If I were you I would only visit once a week sounds to me like the time you spend with your father isn't quality time. Let your sisters do some of the work make them! I am one of 4 and the only one taking care of our mother but she isn't demanding of my time I can't imagine going thru what you are doing.. This coming weekend go to the movies and get your hair done and then eat what you want for a change.. You can't help dad if you've been beat up.Be good to yourself you both will enjoy your visits more.
sissy
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If I had dementia, I would certainly hope that my adult children were using proper discretion and not overloading themselves due to my illness. Over- exerting, overly stressing, will take a toll on the body. A LTC facility is capable of caring for the residents in their care. I'd try to let them do their job and then have reasonable visits that can be enjoyed and savored, since you're not overly exhausted and burned out.
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Yes, vent away!

But venting isn't really enough.

WHY are you accepting these burdens? WHY don't you take a weekend off at least once a month? WHY are you doing things the facility is paid to do?

Are you paying for food at ALF? What's with all these restaurant meals?

My parents were reasonable people and would never ever have imposed on us to this extent, so I suppose that is why I'm having a very hard time understanding why you enable this behavior. Is it guilt? Duty? Fear? What is it that is strong enough for you to be giving up your life.

Do you believe that your father's life is more important than yours? Why?
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Tinyblu - Vent away. I'm so sorry you're going through this. It seems to be the way it goes, that the most dutiful/concerned adult child gets stuck with all the effort, stress and expense while everyone else skates off breathing a sigh of relief that they're not stuck with it. I do think you would be better off setting some limits here. If you have to work a second job to help pay for your father's assisted living, it's not fair that you should also have to give up what's left of your free time to ferry him around and see to his meals. I'm sure he's come to expect it, so he'll resist any efforts to cut back, but you have the right to carve out some time for yourself. You need to have a life too.
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Hi Tinyblu, yes, keep on venting.... My mom receives care at home (for now)...she can't remember that she calls me up to 15 times a day... i.e., don't answer the phone all the time, or you'll wear yourself out! I haven't had a 'vacation' for 10 years.... we all need to take some time for ourselves... Yes, keep venting!
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OK,, your dad is in AL,, so I assume he can get meals there, or is able to prepare SOMETHING on his own? Tell him you are sick,, for gosh sake lie if you have to , to get a day off. He may /will be angry,, so don;t answer your phone.. heck leave it home! You are paying for AL,, tell them you want the bathroom cleaned more often.. you should NOT be doing this at the rates AL charges (think about that for a minute.. you are paying...) Maybe he will quit peeing on the floor, or they will step up, that is is not your job. You say Dad has other daughters.. is there more than the one you don;t get along with? I understand they have dumped all the bills on you, but maybe you need to remind him about them,, for meals out, etc. Stand up for your self and start to draw back a bit at a time. He is is AL,, let them begin to assist a bit more or you will sink. Hard I know,, but you need to do this for your own health. And quit answering the phone every time he calls....really!
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Hi Tinyblu
It sounds like your dad does pretty well to go out for food. I'm sure he really enjoys it but the only person who can give you the weekend off is you. You don't need Dad's permission. You should take at least one weekend a month. Check to see if you can find him a delivery service for those two days. It doesn't sound like he is on a restricted diet. Maybe start with one day out of the weekend and work up to the entire weekend.
This is your life you are living, the same as him. Even if the first time you didn't take him out, you might order in for the both of you? Even the smallest break can make a difference in your mood and energy level and ultimately Dad benefits as well as you.
Give it a thought. You are a good daughter. Happy Father's Day to your Dad.
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So sorry Tiny.
Keep venting.
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