Hospice

[Janet]

I don't know a whole lot about Hospice, but Mom's kidney Dr. thinks it's time. For the last two days, Mom's blood pressure has not been good. Most of the time it reads at 70 or 80 something over 40 or 50 something. She sleeps or naps alot.

Her ankles are swollen very bad and the dialysis isn't getting much fluid off. The Dr. told her she wasn't going to get better and even though most of the time she's in denial, she did say to me "I guess I'm going to die". I told her "not today".

A person from Hospice called and will be here on Tuesday morning to give us whatever information we'll need. Not real sure what to expect, but I'll know soon enough I guess.

I've been feeling sick to my stomach ever since leaving the Dr's office.

[gja1000]

Yes, of course, you are sick to your stomach and feeling terrible. Your mom is not doing well and may not get better. But Hospice can help, it really can. And Hospice does not necessarily mean the end is near, but it does mean they can help her be more comfortable during this difficult time.

[DianaB]

That's reassuring, Gayle. I'm sure that hospice will work with your doctor to help get your Mom better. Maybe she'll listen to them better than she has you and your brothers. Can't the doctor give her something to help get the fluid off besides just using the dialysis?

[Janet]

She does take Lasix twice a day. She can't walk far now and seems to be going downhill much faster. She says she feels fine, but she doesn't and I can tell. Besides her feet being swollen, her cheeks are swollen too. No one is really sure why.

[judy]

I can understand the way you feel, Janet. I have been there. Hospice care is what she needs. It will be good to see how well she will be taken care of, and take that off of your shoulders. Then you can spend time with her with less stress on you.

Prayers for you and Mom, Janet.

[Janet]

Thanks everyone...this may be a dumb question, but does Hospice cost? Where do I find out? I was hoping to get an idea before they come o Tuesday morning.

[lynne b]

Janet, i agree with the Dr. you need to get some help not only to help your mom but to help you also, take some of the burden off of your shoulder's and they really know how to make them comfortable.
As for the cost, i don't think it does cost but not sure, mom had it for dad but it was such a short time before he passed away and there was really nothing to do for him, he passed in his sleep.
I hope your mom will allow them to help her and know that she is helping you also.

[gja1000]

I think Medicare pays for it

[Janet]

So it does cost? I don't think she'll accept it if it does. She's so afraid Medicare will quit paying her medical bills since she's been in the hospital so much.

[gja1000]

Yes it costs, but Medicare will pay for it. And no, Medicare will not quit paying her medical bills just because she's been in the hospital so much.

[Janet]

That's good to know...I really feel dumb when it comes to this stuff. I'll be letting her know she has nothing to worry about.

[judy]

Does she have a social worker working on her case? Maybe the hospice staff can explain it to you in depth.

It is hard to take in all of this information! Don't feel dumb. These are things very few people know until they need to know. I'll be on Medicare next year, and have no idea what it involves.

[Janet]

I tell ya....it's so confusing and there is soooo much information to take in. Just when I think I have appts. and meds under control...there is always something else. My poor brain is going to give out I think...LOLOL

[lynne b]

I know exactly how you feel Janet, we usually get one thing figured out with my mom and seems like there is some kind of a reaction with something else, mostly her sugar. so aggravating sometimes

[gja1000]

Janet, it's confusing to me too sometimes, and I pretty much know what I am doing. There IS so much to take in - it's mind boggeling.

Judy - FOR SURE keep your retirement insurance as your secondary insurance. Medicare only pays 80% for most things, so you really need that secondary insurance to pay that other 20%. If you have a $100,000.00 hospitalization which is not uncommon, then you are left to pay $20,000.00. Not pretty.

[lynne b]

Janet, it's confusing to me too sometimes, and I pretty much know what I am doing. There IS so much to take in - it's mind boggeling.

Judy - FOR SURE keep your retirement insurance as your secondary insurance. Medicare only pays 80% for most things, so you really need that secondary insurance to pay that other 20%. If you have a $100,000.00 hospitalization which is not uncommon, then you are left to pay $20,000.00. Not pretty.

Gayle, I am not into politics at all, in fact i have never voted, i am ashamed to say, but isn't the president trying to cut some of the funding for madicare users? I thought i read it somewhere. or was it the medicade users, i know they want to cut funding for Planned Parenthood. Not trying to start a political post here, just asking.

[gja1000]

Almost every president (if not all) have cut Medicare so you are right. The part that the patient pays won't change, but the reimbursment to the doctors will change. The hard part is that some doctors will drop patients with Medicare because they don't want to accept less fees. And it is the republicans who want to completely reform Medicare and make it a private entity. I don't know who is right and who is wrong, but i do know that we need to control ALL health care costs, because they are out of sight!

[judy]

Thank you Gayle! So, my GHI will pay the balance Medicare doesn't cover?

Lynne, the Republicans want to cut Medicare. That doesn't mean they will cut it.
A lot of hooey is said when elections are coming up! If you do decide to vote, you should make sure you know what your candidate is planning to do. Then, it's a crap shoot whether or not they really will do what they said.

I think it is best to try to figure out their agenda, and go with that.

[paula1961]

How are things going with your Mom Janet? I don't know much about hospice but I do know that my Dad was in the hospital for two straight months and medicare never refused to pay. I hope she's doing better. Hugs to you my friend.:)

[DianaB]

I imagine that it's all confusing......Hugs to you!!!! I'm here if you need me!!!

[JJJ]

Oh my goodness, I was hoping to hear your mom was doing much better. But I agree with all the ladies I think hospice is the way to go.

Sending you lots of XOXO

[Janet]

Thank you all. The reps from Hospice will be here tomorrow morning around 9 or 9:30. I'm really scared and anxious at the same time. I hope Mom is more accepting than she was with the visiting nurse and physical therapist. We'll see.

Mom is not eating well...says her teeth are not as sharp...duh...they are the only pair she's had since she was in her 50's. She also is real bad at pocketing her food in her right cheek, the side that is affected by the stroke. Also, she is now having trouble with lifting her right leg. She continues to go downhill in one way or another. It's starting to get to me more because she cries a lot. She gave me some money tonight and said if she was some place else, she would have to pay and then started to cry a little bit. I know it's not going to be easy for awhile.

[gja1000]

Thank you Gayle! So, my GHI will pay the balance Medicare doesn't cover?

Yes! before Gary got on Medicare (you have to be disabled 2 years before you get on Medicare), we paid several thousand dollars out of pocket, even with good insurance. Now that he is on Medicare, we don't pay a penny out of pocket as Blue Cross and Blue Shield picks up everything that Medicare doesn't pay for.

[Janet]

The meeting with the hospice rep did not go well as hoped for. The rep was a very nice young man, but...he couldn't have been more than 26 years old if that. It doesn't look like Mom is qualified for hospice. She can't be on dialysis with hospice and she's not ready to roll over and die yet which is what would happen if she went off dialysis. Looks like for now, things are not going to change.

I'm so disappointed...I wanted and need the help for Mom and for myself.

[gja1000]

So sorry! I can't imagine she can't be on dialysis - yes I understand it is a lifesaving measure, but still it is also for comfort since she would be miserable without it. I thought Hospice was all about comfort. I guess though, they have rules that must be followed.

[Janet]

Yes...there are always rules and I try to remember that so it benefits as many as possible. He also said she had to have less than 6 months to live....how can one tell??? Last tome she was in the hospital they told us she probably wouldn't make it and here she is. Such a strong constitution!

[judy]

I'm so sorry, Janet. I know this would have been such a big help to you, and great for Mom. Hang in there, who knows why things happen as they do.

I think that was very inappropriate of this 26 year old to tell you how long Mom will live, by the way! My mother was like yours. She outlived all expectations.

God will take her home at the right time.

[Lindsey]

I agree that was VERY rude! I think that how long someone has left to live is up to that person and how much fight they have left in them. Janet, I've never met your mom, but your stories show she has much more fight than most people :)

By the way, my uncle and godfather was told 19 years ago that he had maybe a year to live. He's still living. In my opinion, they are rarely right.

[Janet]

I think I worded that wrong. The man said that for Hospice to accept her she had to have less than 6 months to live. I was just a little upset that they sent a 26 - 28 year old man to talk about end of life with an 88 year old woman. Just didn't make sense to me.

[Lindsey]

I think I worded that wrong. The man said that for Hospice to accept her she had to have less than 6 months to live. I was just a little upset that they sent a 26 - 28 year old man to talk about end of life with an 88 year old woman. Just didn't make sense to me.

Ohhh, sorry I misunderstood!

[lynne b]

Janet, I am sorry this did not work out for you, but there has to be something out there where you can get some help. I agree they should have sent someone a little older and more experienced with the situation.

[judy]

Was your Mom upset about this, or is she glad she isn't going to Hospice?

[Janet]

She doesn't think I need any help because all she does is sit. I told her that's just part of what I need help with...to get her but up and moving a bit. Of course she doesn't need help at all...lol.

Today we have to go to the heart doctor.

[judy]

I saw on fb that you sat there for hours. How did it go?

[Janet]

Let's see if I can give a decent timeline...lol.

Arrive at 10:05 AM
appt. at 10:15 AM
waited in waiting room until 10:50 then taken to exam room
waited in exam room until 11:40, then nurse comes in
nurse leaves at approx. 12:05 (she was new and helping out)
Dr. comes in around 12:45, Dr. leaves at 1:05
nurse comes in to do EKG and blood pressure with Mom in lying, sitting and standing position
1:20 Mom needs to potty. While there also does BM
with walker in front of her...she passes out. I get her aware then call for help..she passes out again. Nurse comes in, I go for Dr...he comes in and she passes out again. He lifts her off the toilet and carries her across the hall to a gurney. She comes to...blood pressure was very low, legs and ankles swollen badly from sitting so long. She starts crying and apologizing for being so much trouble.
Nurse gets her oxygen and then gets her some peanut butter crackers and water.
At 2:30 we leave and go to drive-up window at Taco Bell.
after eating we go to Wellbound for some IV iron....BP too low...they don't want to give it to her.
Drive to her house in Frankfort, pick up her mail, go to bank, then to Wal Mart to pick up prescription heart Dr. called in to up her blood pressure. They had to order it, will be in tomorrow. Went to CVS drug store for pressure socks. Stop at Milky Way for an ice cream cone and then arrived home at 5:25 PM.

Tomorrow...another running day only Mom doesn't get to go. After bus route I have to get groceries, pick up my prescription and hopefully hers and then home to run the afternoon route. Thank God it will be Friday and the weekend will be right after... :D I'm so tired.

[gja1000]

Oh Janet, you DO need a new doctor - unexcusable!!! :mad: Plus, I'm not sure he knows what he is doing! :mad::mad::mad:

[judy]

All I can say is that my heart goes out to you, Janet. You are in the middle of a really hard time in your life. You are doing beautifully, and I am sending you hugs and prayers.

I wish I could jump in the car and take you in my arms and give you real hugs!

[Janet]

I wish you could too Judy!!

[DianaB]

I don't know how I missed this one!! I'm so sorry, Janet, for everything you're dealing with. That's a really long office visit and I know you were pretty ticked off by the time you left!! I'm sorry though that you're Mom's going through all of this......I know that she's upset. I'm praying for you both!! Hugs!!!

[Janet]

Had to take Mom to the ER yesterday. We think she passed out because she doesn't remember falling. She went down on her knees, left an indentation on each. When she came to, she was on the floor on her side with the freezer door open. My son head her yelling and helped her.

She's not doing well this morning. Very sore and vomited before getting out of bed.

Since Hospice was suppose to get back to me and didn't...I was planning on calling them back yesterday. Being busy with Mom I didn't get the chance so hopefully I'll be able to get in contact with them on Monday.

[judy]

I hope you can get through the weekend peacefully!

[Blueyes]

Try a different Hospice Janet. They never should have made you feel that way. I hope things get better soon:)