I need someone to take some of this burden!

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So after getting hospice care set up, I may now have to drop it because they don't offer the type of oxygen Dad is comfortable with and the insurance company dropped Dad as soon as they heard from hospice, which means that the cost went from $25 per-month to over $300 for his oxygen! Since bringing on hospice care, I have had countless calls from a frantic Dad because the ALF is allowing companies to leave supplies in Dad's room withouth notifying me first! So, I have to not only calm him down, which means answering several calls back to back, but try to figure out what Dad is even saying. I am not able to leave my job again to see what's in his room! Dad is terrified of oxygen cylinders exploding, so imagine what happened when he walked into his room to find four cylinders sitting in the middle of the floor! I was on the phone for hours last week trying to get all this together. I had to leave work early to get hospice set up and have been on the phone for over an hour today going back and forth. WARNING: Meltdown ahead!!!!! I JUST WANT ONE DAY TO JUST WORK!!!!! I WANT TO DO MY JOB!!! THAT'S IT!!! NO DAD! NO ALF! NO HOSPICE! NOTHING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Once again, what started off as a productive day has come to a screeching halt and I'm about to have a stinking panic attack. I was never cut out to be a caregiver, and despite my efforts to take things in stride, I'm starting to fall apart. MY FAMILY IS WORTHLESS!!!! THEY DON'T HELP ME!!!!!! ALL THEY DO IS COMPLAIN ABOUT WHAT I'M DOING WRONG!!!!!!! I get calls at 4 AM from Dad because he can't find his toothbrush! I have to take time off work for countless appointments. The line between caregiving and working has become blurred, and corporate America is NOT sympathetic to this delimma! I swear you have to be rich to be old and sick these days or have a caregiver that doesn't need a life of their own!!! My job performance has tanked! I was suspended from my PT job for three days without pay because I yelled back at a customer. High stress and customer service jobs don't mix. I DIDN'T ASK FOR THIS!!!!!!!!! I SHOULDN'T HAVE TO CHOOSE BETWEEN CARE GIVING AND WORK! I'VE GIVEN UP DATING AND A SOCIAL LIFE (working two jobs and caregiving doesn't allow for either) CARE GIVING HAS PROMPTED ME TO NOT HAVE CHILDREN (of course, I would have to DATE to get to that point) BECAUSE I DON'T WANT TO BE AN ELDERLY MOM TO RESENTFUL ADULT CHILDREN FOR HAVING TO CARE FOR ME!!!! I'M ONLY 39 YEARS OLD!!!!!!!!!!! WHEN IS IT MY TURN?!?!?!?! Is there ANYONE that can make the phone calls, help set up things, etc... Here's the clincher - for FREE?!?! I seriously just threw my phone across the room. I'm falling apart.

16 Comments

Tinyblu,
Step outside. Take 3 deep breaths. Take ten minutes.

It is sometimes the phone calls that can be the hardest. I understand.

There will be solutions and caregivers to support you through this, coming soon. Even if you have already recovered your composure, step outside.
You can learn to do this ahead of the melt-down in the future. Most everyone has been through this.

You are not alone. Do not answer the phone, they will leave a message.
Dear Tinyblu,

Sending you love and hugs. I'm so sorry to hear how you are feeling. I know you have sacrificed a lot of time and effort to ensure your dad is getting proper care. It is hard. And very overwhelming and frustrating. I know you are doing everything you can. I feel so deeply everything you are saying because that was me last year.

Please listen to Send. I would also suggest talking to counselor, therapist or social worker and see what other community supports there are. Or calling a crisis line if needed. Please know you are not alone in your frustrations but there is help. I know it doesn't feel like is sometimes, but there is. Thinking of you.
Tiny
I understand
No one will care like you do and even if a sibling would make a phone call chances are things would still fall through the cracks

I had to make 6 Calls just to track lab results down and get a scrip from mom's dr for a UTI 

You are dealing with very important matters concerning insurance and care for dad

Take a breath and make a list - two most important items and set aside a little time to deal with them 

If dad calls at 4 am about his toothbrush - ignore it - you need your sleep -

If his facility calls you at 4 am then answer it - can you set a different ringtone for dad?

Stop answering the phone.

I put my phone on silent at night. It will go to voice mail. In the morning..I listen to calls over my coffee. If it is a real emergency, then the ALF takes over at night....any other stuff..I will sort out when I have time.

During the day, I do not call back..instead I would call the facility and have them deal with it. Or call hospice and get them to stop doing the stuff that is upsetting Dad.

But...you need to not be "Johnny on the spot" for every bit of trivia your dad comes up with. Toothbrush? That can wait till lunch break...or he can call someone at the facility to help him. After all, they are right there.

Start separating these calls out. Emergency..call the facilities or hospice. Urgent, call the facility. Nuisance, leave it till lunch or dinner to call back.
Just sending you an extra hug, Tiny. What part of "Assisted" does the ALF think is nothing to do with them?

Next time you're having a meltdown at work, hear me saying "work first. Dad later." Turn your phone off. Nothing will happen that won't wait 'til close of play. That's what facilities are for.

But most of all big hugs. This just isn't fair, and we all know it.
Thanks everyone... I left the phone charging in the car today. I will check it at lunchtime so I can get some work done.

There's still so many loose ends with this change in oxygen, but I just can't deal with the phone another day.

Work first. Dad later...
Tinyblu.....very good!

Take care of you! Hugs
That's the spirit! I have a feature on my phone where only preferred (starred) numbers can disturb me after bedtime. The Memory Care and Hopsice can call - but not mthr who was not trained to ask "strangers" for help. It's going to be ok.
Hang in there Tiny! I am sorry you are going through all this stress all alone with no family support.

My situation is different but I do have to care for 2 parents with dementia.. no family help or support of any kind,. I take care of it all from financial to medical to any big decisions concerning them...with a full time job... it is overwhelming.

One thing I do is to triage problems, issues. I decide what is the have to do this week and this day....make a list. I only handle those issues. I don't answer the phone while at work.. I check messages periodically but while at work I try to focus on work unless there is an emergency that just cant wait.

There may be issues that need to be taken care of but have to be put on the back burner.. I am only one person and so are you. Not everything will be handled 100% but.. its the best we can do.

Also.. take care of yourself.. put yourself on your priority list as well. I started going to therapy about 6 months ago and it has helped me. During that hour I am in therapy it is all about me. I am learning to let go of the anger, jealousy, disappointment towards my siblings and family. You really need that too!

((hugs))
Tinyblu
I am in almost the same position. But my mother is living in my home with my new spouse. I AM EXHAUSTED! I work as a cg privately then get to care for mom after. I am finally after 18 mths reaching out for help. I am the youngest of 5 girls so you would think I have plenty of help. NOPE. This is after the oldest took my mom for almost everything my dear dad left her with, we are talkin ALOT. I don't have the strength physically or emotionally to start that battle. But all I see when I look at her is saying "I get all this cuz Sam (my dad) and I made a deal that I care for mom" well 8 yrs later I am caring for mom but without the resources. In the last 18 mths my sisters have taken her overnight 4x. When mom is gone all I can do is sleep. I have many health issues myself and was diagnosed w COPD yesterday. I just can't do this much longer. But no one seems to hear me because I do still work 6 hrs a day away from home while my 22 yr daughter watches mom. My Daughter is moving out very soon. Now who can help? All I get from anyone is excuses as to why they can't help. I promised mom I wouldn't put her in a home but may not have a choice. I struggle with this thought something terrible.
I have called a couple advisors but I am told mom's SS will not cover the cost. Also I can not seem to get straight answers from sisters about financial for the past 5 yrs. Mediacid wants that info.
I am so sorry if I seem to be rambling on but I JUST CAN'T ANYMORE. My brain is jumbled like scrambled eggs.
Any advice would help.
Screaming NOW.

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