I miss my life...

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I am happy and sad that I went on my girls trip to the Carribean. It was relaxing and fun, and for the first time in three years, I took the entire weekend to sleep in. No greasy breakfast from a restaurant I hate, no missed phone calls, it was AWESOME. In fact, when we had to come back, I was so sad.

I wasn't back a week before the drama started again, and I feel so resentful. I'm 40, not married, no children. I have a great career, yet the majority of my money goes to support Dad. This is horrible to say, but if I wasn't helping cover his stuff, I would be taking a lot more trips. I miss hiking on Sundays, and sleeping late on Saturdays. I miss waking up late and cooking food I actually LIKE. I miss laughing and joking. I miss intimacy (I haven't done IT in over a year...)

I returned to the ongoing battle between hospice and the Adult Day Center. After pretty much demanding that hospice put Daddy back on the portable concentrator, they are still fighting with the oxygen company which means Dad goes without oxygen on his commute home daily. Once he gets back to the AL, he is completely out of breath and literally falls in the door from the walk from the car to his room.

...and yes, I suggested just pulling him out of Adult Day Care, and the hospice staff said that would probably make him decline faster since that is the one thing that he looks forward to.

Here comes the mean thoughts... and what if he declines faster? How much longer will we BOTH have to go through this? My Dad has been walking around with a piece of a lung for years and keeps hanging on while my 25-year-old, able bodied healthy brother had to die (suicide)? How is that fair? How much longer am I going to have to sacrifice for Dad's happiness? Who knows how long this will continue?

I devoted my whole life to Dad's happiness... once when I was a child and didn't have the option to say no, and now as an adult when I don't know HOW to say no?

As much as I enjoyed that trip, I don't think I should have gone because all it did was bring all of my resentment, anger, and "bad person" stuff to the surface.
OK,, can you go in later, and still sleep in? Go for hikes in the afternoon after you visit dad? Don't stay all day..he is in care, let them care. And you are right about quality of life versus time of life left. I know he likes to go out to eat.. but he will be fed at home,, he wont starve unless he wants to . My mom eats only "sometimes',, but she is still chugging along. She normally eats better when we just ignore her "I'm not hungry" moods. No attention.. no need to act out.
How do you learn to say no? It's called therapy.

Tiny, I've told you, as have others, the YOU are not responsible for paying for dad's care. You're not responsible for his happiness.

Who did you talk to at Hospice, who told you dad would decline faster?  What a load of $hit.  If dad would get engaged in the activities at AL, he's be a heck of a lot better off.

Dad didn't die without your hovering for a week did he? 
Tinyblu, I’m happy for you that you went on your trip. Your dad is cared for and safe. You’ve gone above and beyond for your dad. And you’re right: who was making sure you were safe and secure and happy when you were a kid? You’ve worked really hard. You need to be putting money away for your own future and enjoying your life.
The social worker at Hospice is the one who said Dad would decline faster, and pushed me back a few steps.

I was OK with my decision to take dad out of ADC. I felt like he would adjust. I had my exit strategy. Now I don't want to do it because the hospice folks will judge me.

Speaking of... it's been two weeks and they still don't have Dad's portable concentrator. Instead, he's going to the ADC with only enough oxygen to get him there. In the evenings, he is enduring a long car ride home and trying to walk from the car to his room with no extra oxygen at all. I've heard he literally stumbles in the door in the evenings.

In fact, HOSPICE took him off his old portable concentrator and put him on the tanks. They've been nothing but trouble.

I'm so sick of being stuck in the middle of this. Hospice is supposed to help. The only help they've provided is getting Dad on Ativan. They've added morphine, and all that does is make him sleepy and even more forgetful than he was before.

I seriously think Dad is going to keep plugging along for YEARS and I feel badly because I will start to resent him for it
...and I am working on weaning Dad off the Saturday breakfasts. I'd much rather take him to lunch. I am also going to work on not bringing him Dinner on Sundays, but it's super hard for me to not go when Dad is aware that I'm in town. Besides, I lie to him during the week about being at work on some evenings just so he won't ask me to come over.

I can't hike in the afternoons because I often work 10-12 hours at the second job on the weekends.

Saturdays look like this: Wake up early - drive 45 minutes to pick up dad - take Dad to gross diner -- pick up snacks and toiletries for Dad -- take Dad back to AL and clean his bathroom (they do a horrible job and his room smells like a urinal) -- clean where Dad has spilled potato chip crumbs and soda on the floor -- drive 45 minutes back home -- try to steal a moment or two of me time -- off to work for 10-12 hours.

This is after working a full 40 hour work week and every other week I work Monday evening and Friday evening from 5 PM - Midnight only to be at the full time job at 8 am the next day.

I know I'm doing this to myself, but when do I have the time, money or energy for therapy? Any free time I get, I'm usually trying to rest or figure out why my apartment is filthy (still only have bedroom furniture -- thanks to caregiving) while Dad's is spotless.

I really hate I went on that trip. i had become OK with where I was and was gonna just suck it up to my life being pretty much over until Dad bites it. Seeing what I missed for those few days really made me a horrible person.

I'm spinning again... This is awful
Stop cleaning dad's bathroom. Stop paying for extras for dad. Visit once a week, like anyone else.

Get yourself a twice a month housekeeper and a therapist.
I would complain to the owners of the AL facility about the bathroom. My grandpa was in an understaffed, very average/mediocre and the bathroom was not (usually) messy or gross. That is unacceptable. These places are understaffed and if you do the work for them, they will wait for you to do it. If you don’t want to complain, I’d just let it go for a week and leave a note in your dad’s room for housekeeping that you noticed his bathroom needs cleaned. 

I think at some point, something might click for you regarding caring what other people think. Every year since turning 40, I give one **** less about what other people think. It’s a slow process but it’s happening. I hope it happens for you too.

We had a good experience with our hospice team, but I know there aren’t great ones. That woman should NOT be guilting you, especially as your dad’s only caregiver, and especially when you have no support. Plus it’s sad but they see so many people — maybe she was just saying it thoughtlessly and not thinking about the ramifications for you. And if it’s so important for him, why don’t they make sure he has the correct concentrator?

I would be ticked off too. I know it’s corny, but when you’re making these decisions for your dad, are you making them from your heart, head, a sense of anxiety or compulsion?  It might help to listen just to your heart and not guilt, anxiety, etc.  My guess is that your heart might have kinder judgement than your mind does (speaking as an anxious person who frequently feels hyper-responsible and guilty...)
Dear Tinyblu,

Sending you love and hugs. I know its hard. I'm glad you had this break but at the same time I totally understand how your anger and resentment is coming to the forefront again. It is a vicious circle.

Keep talking it out with us. We are all here to listen. It's all going to be baby steps. Try to change one thing at a time.

I felt like you, my friend. I felt like I couldn't walk away. I was stuck. I was angry and resentful as well. I know hindsight is 20/20 but if you can take anything from any of our experiences, please know you do have choices. They are not easy ones, but try and do what is best for you.

From my own experience anger and resentment is a terrible poison. It affected my compassion and judgement as well. I truly wanted to do what was best for my dad, but in the end, I didn't even get to say what I wanted to my dad in the end. I left his bedside only to have him die on me.

I failed to realize how devastated I would be losing my role as his caregiver. Now I have all the time to sleep and travel and all I want some days is to have my dad with me still. Either way its a terrible burden for the mind.

Thinking of you. Take care of yourself the best you can.
Wish you were my BFF! Love your tough love. I have to admit to not knowing Tinys whole story as this is the first post I have seen but so similiar to my feelings.

I seem to be able to TL others but when it comes to me I'm not sure how to do it or what it would look like for me. I will be Medicare eligible also this yr. and contemplating an "early" retirement to better take care of Mom. Sacrificing again for Mom or preserving her hard earned funds? A trade off?

Tiny......just TRY BB's advice.....even just one thing @ a time....like the bathrm cleaning.....they now know you do it so why should they? I am guessing they don't even do it at all anymore.

I miss my cycling hiking and skiing too so I get it. It is a trade off....hiking or shopping or GF....a restaurant you despise. Would your Dad really want you to be that miserable? I know what my choice would be.

I moved in with my 94 yo Mom with COPD while my own house is checked maybe once a week. It hasn't been cleaned in a year! And yeah...my Mom... a huge meat eater...I detest even touching it...but I do for her. If I don't her digestive track will repay me BIG TIME.

Luckily I was able to reduce my work hrs to from 40 to 32 so I guess you could say I am "paying" for Moms care as well. Could not do it all working a high stress job and taking care of EVRYTHING for her.

Somethings got to give or your health and well being will continue to decline and then you will be of no help to your Dad. I said to Mom the other day "I just feel like collapsing to the floor and dying." Her reply "That's what I want to do!" We both burst out laughing.
Those moments make it worthwhile as Mom has always been my best friend.....she would and did anything (within) reason for me my whole life...she was always there for me.....

Tough love me BB!

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