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Why won't Maggie STFU??

Okay, instead of starting yet ANOTHER thread about Mom, I'm blogging. It's been my therapy to write down what's going on. But another thread?? No.

I just got a call from the nursing home, and mom is being discharged on Sunday. She still has, like, 47 Medicare days left, but they explained they would have to commit fraud in order to keep her. In Medicare's eyes, they tell me, Mom is "stable." Though she needs very carefully monitoring with her diuretics, that can be done at home. When I questioned why she's considered "stable," they explained that, since there's no cure for her...no plan to treatment to wellness...Medicare will not just use up the 47 days. She has to go home or be private pay.

I'd already come to terms with her being private pay. It's around $9,000 a month. She will exhaust her funds, then Medicaid will begin paying.

The doctor explained that, when she first got congestive heart failure, there was a really big window where she'd be just fine. That window has been closing...until now, there's a very small opening in that window. Having taken diuretics for 10-or-so years, her kidneys have been damaged. Diuretics stop her from filling up with fluid. AND they make her kidney function worse. As her kidneys get worse, she needs still more diuretics. Vicious circle.

The doctor told me the other day that at least 50% of people in her situation are gone within six months to a year.

I spoke with the Nurse/Manager today about Mom, and she said, "If she were my mom, I'd take her home, let her do anything/everything she's capable of doing within reason, and, when medicine tweaks no longer work, keep her on diuretics and let her go. Get hospice involved at that time." It sounds cold, but she was very compassionate.

It came as a shock to me to realize that the Home Health Care Nurse mom had last fall was "into" doing exactly that. She came to see mom twice a week. She said I should begin to consider hospice (comfort care only) for mom at THAT time. One day, I woke up (as in "woke up") and said, "I'm not giving Mom one more pill until I've talked to the doctor. I think I'm poisoning her." Poisoning her from the standpoint that the diuretics were working too well. (She was on TONS of them.) She was sleeping allll the time, wasn't eating much AT all, would hardly drink water. The nurse IMMEDIATELY cut back on her diuretics after a call to the doc. And we kept cutting back until she got balanced. She did really well for months -- until she fell and broke her hip.

The nursing home knows Mom's good for at least a year of private pay. I interviewed their Admissions Coordinator and toured the facility last week. The Nurse I spoke with today, the one who suggested above, didn't even mention admitting her into the facility. As a private payer, that's high motive to get new people. I'm reading between the lines. And trusting what she's telling me even more because of that.

I'm still not sure I can handle Mom at home. Her bathroom trips and transfers from wheelchair to bed -- if she can't stand up, and I'm not sure about that -- are going to be neigh onto impossible. But my conscience tells me I have to try. I've got oxygen already set up at home. She's not on much, but needs it at rest. I'm getting a hospital bed. And Home Health Care will start the day after she gets home.

I think it's time to let her go. I think that's what everyone's "telling me." It's hard.
 
Hang in there, Maggie. About 12 years ago I assisted in taking care of my ailing grandmother, who had broken her hip (twice), and was on oxygen. There were 2-3 of us, and it was very hard. Do you have any help at all?
 
Maggie- I don't want to see you shut up. I like to hear what's going on with you and your mom. These are very difficult decisions to make, and the more I think about them, the better it is for me to help get all my own issues and thoughts in order. I just try to keep in mind what I believe I would want if it were my son making those decisions. What I wanted for my dad was for him to have as much quality in his life as he could, and I prayed to God to take my dad fast and not let him linger and suffer for months and years. I loved my Dad as much as I've loved anyone in my life, and as much as my impulse was to try and keep him here, I could not stand the thought of watching him waste away slowly. Fortunately, it happened much sooner than we expected, and with a lot less trauma for him. God Bless you Maggie. My thoughts are always with you in this time of your life.
 
I think it's time to let her go. I think that's what everyone's "telling me." It's hard.
Keep on posting, Maggie. Writing is how I let out my steam and give thought to the issues and difficulties that I am facing in life.

On your post, I don't think doctors and nurses can tell you what to do. However they see this all the time in their careers. At the end of our lives our bodies are breaking down. It's a slow-motion car crash. Like lizzie and Amadeus - I saw it too with my grandmother who passed away last year. By the time of her passing she had chronic back pain, chronic shortness of breath, acid reflux (couldn't eat a thing), ridiculous high blood pressure, was severely diabetic, low vision and had just recently survived her second bout of cancer. That's only what I know about her condition off the top of my head, because my grandmother didn't dare let anyone know the full extent of her health problems. We think she finally passed away from a heart attack, as she was still living by herself, by her own choice, and my mother is still devastated a year on. However I am just so thankful that my grandmother passed that way, instead of having her endure the rest of that awful and painful decline.

Remember that thread I made about how most health care professionals want to stay clear of life extending measures? I think that is what the Nurse/Manager is talking about when she is reflecting upon her own mother. They, and I think almost everyone here, wants to go as peacefully as possible, without prolonging the crash beyond what is necessary.
 
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That's rough Maggie. I wish you the best and the best you can do for your mom is just stay strong and do the best you can, knowing sometimes it is not enough. I was the caretaker for both my grandparents towards the end of their lives and it was tough and required a lot of sacrifices from me that were very difficult at the time. I'm glad I persevered and made it through it by being the loving grandson I needed to be. Caring for my grandfather as he suffered through the last few years of Alzheimers was the most depressing and difficult thing I've had to do in my life. So far. I completely understand where you are coming from with all the issues you spoke about, the medicare, the money and exorbitant cost and efforts you have to make. Make sure to take care of yourself during all of this and I'd suggest seek out support from family and friends or if need be, a support group, there are many out there that exist for that purpose. Good luck.
 
Keep writing Ste Maggie. We listen, learn, feel; sometimes we respond. It is our feeble attempt to help lighten your load.

Keep sharing. We care.

Godspeed to you and yours

Thom Paine
 
I barely know you Maggie and am just beginning to get the gist of what you are all about through your posts. But I've been where you are though the process wasn't so long and drawn out, which turned out to be a real blessing. And it does help to get it out where you can see it, and writing it down helps to do that. And having folks hear and understand does too.
 
Oh, Maggie. Bless your heart. I can't imagine the heartbreak this roller-coaster of emotion has been for you. You are in my thoughts daily. You are a good daughter, and a blessing to your mom, who knows how much you love her. My greatest hope for you is that you will have a few more weeks/months with her before you know in your heart that it's time, and will be at peace with your decision. *hugs*

Di
 
Maggie, You have my profound sympathy.

Keep posting whatever you want to post,someone on the forum might have some helpful ideas.
 
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