I've started this entry about 10 times and deleted it because I don't want to sound like a you-know-what.

I took this on. I know that. NH wasn't an option for ME. I can't reconcile placing Dad in one just yet and where I live, private pay NH's with Memory Care cost more than the AL I just took him out of (that was just reprimanded HEAVILY by the state). Call me a snob, but the Medicare / Medicaid facilities are atrocious. I could never live with myself if I left Dad there.

OK... onto my question. There may not be an answer BUT... I was wondering if there were any fellow introvert caregivers out there and if so, how do you get that much needed recharging time?

On nights when I have a caregiver, I will just leave work and go somewhere and sit in a parking lot in the car because I don't want to be around people after being around them all day. I've used my employee discount from my part time job to get a hotel room a couple of evenings, but that seems like a waste of money. I don't want to pay $80-$100 for a hotel room that I won't be staying in overnight.

Last week I tried to sneak in the back door to take a bubble bath, but soon realized that my dog would continue to scratch at the bedroom door (essentially giving me away) and that Dad. Talks. Constantly. Loudly. As soon as I lowered myself into the tub and opened my novel, he decides to engage the caregiver in one of his mindless rants. It was as if he was in the room with me. Epic. Fail.

So, today after getting Dad settled, I thought I may be able to retire to my beautiful master suite, lie in bed and read my novel. Apparently Dad doesn't like to see that bedroom door closed. He kept jiggling the handle or knocking every few minutes. I then found him in his room crying because he thought I was upset with him.

I'm finding it challenging to even take a long shower. I've had to jump out a couple of times to check on Dad.

Should I just accept this as the new normal and expect it to get worse as Dad continues to decline?

...and is it bad to close my door (unsafe?)

I really don't want to always have to LEAVE my house to get silence. Is there a happy medium?

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You should just ACCEPT this as the new normal if you have CHOSEN it as your normal. You have options. If this is the option you choose, then get used to it.
Helpful Answer (11)
Reply to jeannegibbs

Obviously, you are upset about what I said on your previous thread. The self-pity, victimization and passive aggression are also symptoms of narcissism, which yes, I admit I said. I am not the only person who thinks it but I am also one of the only people that will say it to you. I will not enable you.

You made choices, no one made them for you. You knew what you were getting into, do not expect people not to point it out. Again, your post is about you and all of your material objects. I just feel bad for your father because as long as you continue controlling behaviors, he will never get proper care because of your controlling behaviors.
Helpful Answer (10)
Reply to tacy022
surprise Oct 15, 2018
Tacy, You are BOLD. And right.
Tiny, what Jeanne says, unfortunately is true. You’ve gone through a heck of a lot of planning to set up this situation. You did know what your dad was like, so how he’s acting really shouldn’t be a surprise. Even though the reality of the situation isn’t easy to accept,

I’m so programmed to take care of my husband that I’ll think I hear him and when I go to check, he’s sound asleep.

He watches the same 40 year old reruns on television every day, all day. I can also tune those out. I have an iPad and I can be in the same room with him and be “miles” away.

You need to develop some strategies to disengage when the caregiver is there. You don’t need to focus on what he’s telling the caregivers. Go to your master suite then with instructions to the caregivers that while they’re there, you are not to be disturbed.

I believe there is a “happy medium”, but you have to create it for yourself.
Helpful Answer (8)
Reply to Ahmijoy
anonymous262233 Oct 15, 2018
This is helpful. I went out and got some noise cancelling earbuds to wear the next time I decide to attempt a bath while the caregiver is there. The dog will just have to scratch at the door.

Those earbuds were actually a lifesaver last night. I popped them in while I was preparing meals for the week and let Dad just chatter away. An occasional "Uh Huh" or "Oh Really" seemed to keep him happy.
Tiny, do you realize that in 3 years you have posted over 200 threads at least 90% just about your sacrifices. There are a few people on this thread who have continually supported you. As soon as they say 1 thing, you do not agree with, you get hurt feelings to another thread...then all is forgotten and support again. It is an unending cycle. In my opinion, someone should have said it long ago.

Your circumstances will not change when you do not listen and make excuses after the fact. The only way things will change is if you start accepting the support or criticisms, not but, but, but. It is up to you to decide to change and take action.
Helpful Answer (7)
Reply to tacy022
anonymous262233 Oct 23, 2018
We all have opinions and if that's yours that's fine.

I don't claim to have all of the answers which is why I come here.

Do I follow all of the advice, no.

Have I made 1 MILLION AND 1 MISTAKES... absolutely. Should I have listened to others in many instances... of course

Here's my favorite word ... BUT BUT BUT BUT BUT BUT BUT

Labeling me as a narcissist is rude and WRONG. Narcissists don't have empathy. I should know. I was raised by two of them and dated them

For the past four years, I have (stupidly) run myself ragged just trying to figure this all out with the sole (futile) mission of keeping my Dad happy, often at my own expense. Shall we recap?

1) At the beginning, I had Dad in Independent Living Facility, attending Adult Daycare AND paying an overnight nurse (Dad said he was SO lonely). This was SO expensive, and I took on a second job to cover what Dad's VA benefits did not cover)

2) When that got too expensive, I moved Dad into a small apartment, hired in-home overnight help 3 nights a week and spent the other 4 with him myself. During this time, I lost my job, my house and my relationship which ended up being a blessing in disguise. I moved into a SH**HOLE apartment across the street from my Dad's complex, slept on an air mattress for two years (and bought him brand new furniture by the way) and focused on getting back on my own financial feet.

My big mistake this time was trying to pinch pennies and get "bootleg" help. Between caregivers not showing up for a shift because they were in jail (I WISH I was lying), telling me that Dad did NOT have dementia, but they enjoyed taking my money to taking Dad's keys so they could hang out at Dad's apartment while he was at the Adult Daycare (yep... walked in on her lying on Dad's couch in her underwear while watching Judge Matthis and eating fried chicken), I learned that this was not a good option either.

... and that was again my fault for being in denial about Dad's needs and trying to compensate for them.

3) So back to the Independent Living Place we go (and paying al-la-carte for additional services). MY WHOLE THOUGHT PROCESS IS IN ONE OF THOSE 200 POSTS YOU MENTIONED!!!!

I SHOULD have recognized then that Dad needed a higher level of care, but my own FOG (Fear Obligation Guilt) makes me bull headed because I WANT EVERYONE TO BE HAPPY (codependent attempt at controlling others' feelings at it's best). So Dad then ends up being put on 24-hour oxygen and it became obvious that I had to move him (again).

Mind you... I'm still working multiple jobs to cover what Dad's benefits did not because I STUPIDLY promised Dad I wouldn't touch the $50K he had in savings to help cover this.

So... I moved him to Assisted Living... and kept him in Daycare. Did I mention that I paid a woman $400 a month to pick Dad up from the facility and drop him off at the ADC because HE didn't like the taxi driver provided by the ADC, and because I felt bad that I couldn't do it myself (ADC was 25 miles away and there was no way I could make it to work at my MULTIPLE jobs)?
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What the [expletive] are you talking about?

"and to those that say "what about your Dad"' you say - as though there's page after page of posts saying "hah! You weak and selfish brat! How dare you whine on like that about luxuries for yourself when your poor dear father is suffering so..?"

Well, have another look. Because the ONLY person taking that point of view is you.

I take issue with other points. You may call me a hair splitting pedant if you wish, but listen. To yourself, again.

"She left when I was an infant and died of a drug overdose when I was six. At the age of nine, I transferred that care to my baby brother when he was born"

Excuse me. You "transferred that care"? You have transposed your thoughts, there. Your mother left you, an infant, giving you no care. When another baby was also left without care, you - aged nine - attempted to supply the deficit. But that was not a transfer. If you had been given love, and had passed a habit of care and security on to your baby brother, that would have been a transfer. The point is that you were not. What you were doing was not transferring, but compensating.

Compensating is what you have done all along and are still doing.

Your father gave you something to cry about, did he. Think he was right?
Two wrongs don't make a right. How many wrongs make a father you are justified in staying away from?

But actually, I don't suggest you should abandon your father. In spite of his glaring faults, you have also described many admirable qualities that he has shown, and some that he has passed on to you. For example, determination, grit and aspiration.

This isn't about being able to read in the bath or take a couple of hours down time doing nothing, is it?

What do you think it's about? I'm not sure.
Helpful Answer (6)
Reply to Countrymouse

Though my caregiving situation is not as intense as yours, as an introvert I totally relate. I love to be alone -- one of my favorite things in the world is a long, solo hike in nature, with no need to interact with anyone else for hours.

However, at this time at my life I care for and am with my dear father for hours at a time virtually every day. Luckily, he is a quiet type of guy, but he needs someone nearby at all times. Lately I've found my biggest problem is his love of news, on TV and radio. It drives me bonkers, so I have advised him (trying to do so in a neutral, non-judging way) that I need to wear headphones periodically to limit my news exposure for the sake of my mental health. He has accepted this, and I find it also gives me at least a sort of simulacrum of "alone time" as well.
Helpful Answer (5)
Reply to SnoopyLove

Hi Tinyblu

Firstly, say everything you want to here, no one will criticise you as most will have gone through (or similar) and we all feel for you.

May be go to a church (lovely buildings - so peaceful) Or if you are a specific religion, or atheist then what ever suits you.
Hospitals have non-denominational places that are silent and restful.
Libraries are good too.
A cup of coffee in a cafe (You can be alone in a crowd of people)

Get your self a recording saying
"Just coming Dad"
"Wont be long" or anything that soothes him. ONLY when the caregiver is with him though.

Try an get yourself a new routine (for you and Dad) where he is occupied (safely), while you do something else.

But yes, sorry to say the centre of your life is now DAD. It does not mean you should forget about YOU. If you get 5 minutes peace, just sit there and enjoy it.

Take care of yourself. Without you being healthy Dad had nothing.

Hugs and good luck
Helpful Answer (5)
Reply to BuzzyBee

I've got to clear this up before I can say anything -

You don't want to sound like a you know what what? No, I don't know. Like a person who needs occasional privacy for things like going to loo and having a bath?
Helpful Answer (5)
Reply to Countrymouse

What about your dad? After being with a caregiver all day, maybe he wants to spend time with you. You made a choice, accept and deal with it or make a change. There is a Latin proverb "non semper erit aestas" will not always be summer.
Helpful Answer (3)
Reply to tacy022

I don't do needy well. No one is allowed in my kitchen while I am working in there. Hate to turn around a have someone right there. Kids especially. Never considered me as an introvert but as I get older I don't seem to need friends like I did as I did when younger. When Mom was here I left her in her room most of the day. ( Moms room was the former family room which was on the lowest level of a split. She was able to see the activity out her room) I served her breakfast and lunch in her room. (Husband and I ate breakfast at different times and lunch is not something we do) She ate dinner with us and spent the evening watching TV with us. For me to be able to deal with having Mom here, I needed my time alone. My husband thought I should have her with me all day. But I just couldn't. I also went from babysitting 5 days a week for for my gson right into 24/7 for Mom.

I agree, you need to take time for yourself when the aide is there. Like said, this needs to be your private time door locked.

Where I live the facilities are not just medicare/medicaid. There are private pay individuals. My daughter has worked in these facilities for over 20 yrs. She said staff aren't told who is Medicaid or private pay. All residents get treated the same. We had Mom in a nice NH. My daughter and I agreed that maybe we should have skipped the AL. Mom was taken better care of there than the AL.

I think this is just as much as a journey for you as Dad. Maybe there is something you need to learn from this experience.
Helpful Answer (3)
Reply to JoAnn29
anonymous262233 Oct 15, 2018
JoAnn I think we are kindred spirits!

...and the only way I can cope with EVERYTHING I've endured in this life is to think that there is something I need to learn from this all. Boy, I wish I could rush those lessons sometimes...
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