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.

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I know what u mean with agencies coming and going without telling you when. Had this problem with Mom's home rehab which is the same agency that does Hospice here. I called and asked if they could please schedule their visits. Early morning was bad because I was getting Mom washed, dressed and breakfast. They started coming at 10am which was so much better. My husband felt I should work around them. I told him they are coming to a private home and need to work around me. When u don't know when they r coming u can't get errands run. Tanks, really. Sorry, but this Hospice is not with the times. Isn't there another agency you could switch to? Hospice will not drop ur Dad unless he has a big improvement. There is no longer a timeline. I have heard of people being on Hospice for two years or more.
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Tinyblu, I'm so sorry! I was one of the ones encouraging you to call Hospice:( I am so sorry. I can see why your dad is freaked out by the tanks. On the other hand, there have to be other people in his building who are on oxygen -- maybe he doesn't see them with his vision issues.

I feel so bad for you. My mom is a perfectionist and could not stand it when my grandpa was uncomfortable or upset. Her attention to detail and persistence are what kept him going but at the same time, it's took a toll on her well-being and finances. Your dad sounds like he's been the one who's always made the decisions, and everyone else has had to deal with the repercussions. Being old and losing control of things must be awful, but at some point you wish they'd realize how hard you are trying.
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Kimberj... just wanted to send hugs to you. This IS SO HARD! It's nice to have folks here that "get it".

Sometimes I'll come across the wrong blog where someone in our situation (mind you, I have more help than most since Dad is in a facility) is reaching out for advice or venting and someone who doesn't have a clue will start in on them with the

"How DARE you say that about your loved one!" or "It's your DUTY to take care of your parent! They took care of you..." blah, blah, blah... Oh, if they only knew.

On the rare occasion that one of the "family" members does come to spend a couple of hours with Dad and comment that "It's not so hard" I'm often tempted to just drop him off and leave him for a weekend...

Wait, I did let my Dad's other daughter take him for a weekend... it was a DISASTER!!!!!

If it wasn't for this forum, sometimes I really think I would completely lose it...
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Katiekay... I SOOOO wish I had the time and money for therapy! I know I need it, but have trouble squeezing it in with two jobs and visits to Dad.

I was attending CODA meetings regularly for a while, but the only meeting that fits my schedule is 45 minutes from my house, and most times I'm too tired to go.

I was in regular therapy before caregiving, but it's too much of an extra expense, and my insurance doesn't cover it. If I had time I would start a face-to-face caregiver support group on my own. It's SOOOO needed.
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JoAnn, Medicare is covering Dad, but their supplier only has tanks. I spoke with his current supplier and they said they were willing to work with Hospice, but when United discovered Dad was on Hospice, they said they wouldn't cover the small portable concentrator.

In fact, our current supplier had to do some fancy footwork to get the portable for Dad.

This whole thing has given me a bad case of the "what ifs". As tough as Dad is, he could easily outlive the Hospice benefit, and now I'm worried that I'll have to jump through hoops again to get things back on track. I'm not wishing ill will on him, but that is just something I need to try to be prepared for.

Hospice has helped tremendously with altering the meds and visits, etc., but I feel really left in the dark. I have no idea who's coming or when. I feel like I have to call and follow up on things more now because I'm NOT being kept in the loop... I dunno. I'm thinking that they're trying to relieve my burden, but then I'm hit with fire drills because I wasn't kept in the loop from the beginning.

I'm starting to think I made the wrong decision with Hospice...
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I am having a problem with the insurance not paying.
I live in NJ. My Dad's insurance was Medicaid and Aetna. When ur on Hospice Medicare covers it. Here, Hospice has there own suppliers. So Mom had to call the present suppliers and tell them to pick up their equipment. Dad paid nothing for the change over. Is your Dad on Medicare, if not then call ur insurance company and see what Hospice they recommend that uses the suppliers they allow. The only tank Mom had was for emergencies incase there was an outage.
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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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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))
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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.
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Tinyblu.....very good!

Take care of you! Hugs
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