Anyone have any experience with hospice?

[kickingandscreaming]

I am strongly considering it,  have an appt. with my PCP to discuss end of life issues and I initiated contact with a RE broker to look into selling my house after I'm gone.   I can't find a reason to stay alive and my medical options for staying alive suck. And the state of the world under Trump is toxic to me.  I'd like to live long enough to watch him go up in flames, but I don't think that will happen and it's not worth sticking around for nothing. Unfortunately, I live alone and none of my friends are nearby.  I'm not sure how hospice works when you can't have hospice at home (alone).

Any one with experience dying from kidney failure in hospice?  TY.

[iolaire]

My sister was in hospice, not responsive for two weeks prior to her passing. When we visited there were other guests who were mobile, going outside to smoke and visiting everyone who was out and about.

It was good to see that people are making the choice well they are still lucid and able to “enjoy” (bad word sorry) time out of the hospital as their bodies wind down.

[MooseMom]

I am sad that you are having to think about hospice, but I understand why you are.  I cannot answer your question, but I am glad that you will discuss it with your PCP.

If you do not mind too much, I would very much appreciate it if you would share with us the discussion you have with your PCP.  I don't wish to intrude by any means, but I would bet that most of us here on IHD might very well find ourselves in your situation and not know what to do.  If you don't wish to share what you and your PCP discuss, that's certainly understandable.  In any case, I hope s/he can help you see a way forward.

You are in my thoughts and prayers.  I know that's a cheesy and ineffective thing to say, yet it is true.  And I'm sure you know how I feel about the current state of the world. 

[Charlie B53]

We have known for months that Wife is Terminal because of these repeated mini-strokes.  Hopspice finally approved and began coming into her Nursing home a few weeks ago.  Basically they help keep her comfortable.  About the only physical thing I know of them doing is another attentant comes in twice every week and gives her bed baths in addition to the ones the Nursing home staff gives her.

They did replace her air mattress and recliner roller chair, whether the newer ones are any better I can't tell as they are very much the same.

They have written med orders, very near the end many peoples breathing pattern becomes irregular, gasping, while unconscious.  This can be very discomforting for witnesses, so their Dr orders a dose of morphine.  It isn't so much for pain as to relax the diaphragm and better control breathing. Stabilizing breathing can actually increase O2 levels that may have been falling due to the gasping.

The Neighbor up the street that I bring to Dialysis recently began Hospice at home.  He isn't doing well and may not have too much time left.  His Wife just told me this morning that Hospice Company actually has their own hospitall so if/when he does get that bad they may move him there instead of keeping him at home.

When I first called to check into Hospice I had no idea there were multiple companies.  I simply called the local hospital.

I feel you have quite some time yet, PD can be adjusted and continue working well for you.

The hardest part is keeping your determination, the mind set that has gotten you this far.

Never give up so easily.   You are far far tougher than you think.

When you look back at what you have done so far then you may begin to realize the massive strength you have already shown.

Keep Taking Care,

Charlie B53

[kickingandscreaming]

Thank you everyone for your kind words and wishes.
Charlie, you are right that my PD can be adjusted (I'm very sorry about your wife).  I'm sure it will be, since I no longer pee.  The issue is really that there are so many interlocking and overlapping issues that make everything more complex.  I'm what they call a "complicated medical patient."  Whoopee. 

There is the dialysis at the base of everything.  It complicates ANY other procedure that needs to be done.   My heart is probably what it going to kill me.  I have 3 things wrong with my heart:
 ---heart block (heart beats too slowly. now have pacemaker); 
---Atrial fibrillation which puts me at risk of blood clots and strokes
---mitral valve prolapse, that required open heart surgery to repair andhy t is causing significant breathing issues
If I have to be hospitalized for any of these there will be the issue of getting  PD in hospital (most hosp don't offer it) and my  ability to continue schlepping 2-ton bags of fluid, day in and day out with NO help.

[cassandra]

Dear KaS, is there no homecare where you are, who can help you with the bags, or any other heavy things which need doing?


Love, Cas

[kickingandscreaming]

No one here to help.  Not on a daily basiis.  I have applied to local helping agency and have been rejected because I appear to be wealthier than I am.  I rent out the upstairs of my house because I couldn't afford to live here otherwise.  They look at the gross earnings and "neglect" to deduct my mortgage, taxes, insurance, repairs, etc. from the total so I appear to earn enough to not need help.  I could buy help, but I don['t have enough money to do  that on a regular basis.

[PrimeTimer]

I was told of a widow who sold her house and small farm to move into a nursing home. She did not need absolute nursing care but she did not want to be alone on the farm anymore. She had no children or family and did not want to be a burden on anyone. The nursing home interested her because they could help with the things she needed help doing and also provide an environment free from loneliness and boredom. Fortunately, this turned out to be a very good fit for her. I thought it brilliant.

 

[Simon Dog]

Charley - you are describing Cheyne Stokes brething.  I really must master doing on demand in case I ever want to have some fun with the medical staff.

[Blake nighsonger]

Hi KS, A Good Nursing home is the way to go or Assistant living maybe?   

Get to visit with people or bond with them  never been around to much Hospice sorry for this must be so trying.

You got this KS!!!             

That president Trump, i know.... going to be interesting on what transpires!!
 thanks

 yours truly,

        Blake nighsonger

[GA_DAWG]

K&S, i have waited to answer this as I really wanted to give you some kind of profound thought, but there are none. I can tell you that my in-laws both received hospice care, though both were for Alzheimers, not kidneys. The care they received was excellent and each of the hospice workers did their utmost best to make them as comfortable as possible, including morphine in the last days. It has been a hard six months for us at our facility. We have lost several, including some who have been on dialysis for years, decades in a couple of cases. I can tell you the decisions made by a couple of those. One was a man who had been on dialysis for many years. His sessions were getting more and more difficult, a couple years earlier he had what was supposed to be a widowmaker heart attack, but survived. At any rate, he made an appointment to see his doctor, and I don't know exactly the diagnosis, but a couple days later he came during a session, told me and others that he had something worse wrong, and that they told him continuing dialysis would possibly make a month or so difference. That being the case, he decided to no longer dialyze, and was gone in only a couple of weeks. Another found out that tumors had returned to his kidneys, bt so far has made the decision to continue dialysis. Given their choices, I don't know which I would make as I cannot begin to understand the pain nor the emotions they go through. I guess in the end, it is something we each have to decide for ourselves, though we want others to tell us we are making the right decision or that it is painless or whatever. In any event, my heart truly goes out to you and I hope you will be given the peace of mind to make what is the correct decision for you. I do think it rather ridiculous that there are not better options for seniors in the US.

[kickingandscreaming]

Thank you, GA DAWG.

[Charlie B53]

I've known for a year that my Wife would never be coming home to me, but it was many months before the Second Neurologist showed me her MRI of 18 months ago which clearly proved she is Terminal.  The first Neuro didn't bother to tell us anything.

Either way, Neither the Neuro nor the attending Physician at her Nursing Home bothered to make a Terminal Diagnosis in her record so Hospice was pretty much Barred until I finally got that second Neuro to make it official last month.   Only then was Hospice able to step in.

Care wise, the Hospice Nurse visits her three times every week, M - W - F to check and see if there is ANY change, good, bad, or indifferent.   Hospice also has a Bath Attendant come in at least twice every week, she either gives a complete bed bath and rub down with body lotion, or put her in the whirlpool bath, then applies body lotion.

Hospice replaced the Nursing Home Air Mattress with a slightly different air mattress and also replaced the Nursing Home Recliner Chair with a bit better padded reclining chair.

Where the Nursing Home was providing supplies such as diapers and wipes, now Hospice supplies all.  I'm told some Nursing Homes bill separately for supplies.  I haven't seen that in my bills.

Hospice has Social Workers and a Chaplain available for any Family member that wishes to talk or have any questions that may need answers.

The Lady that shares Patsy's Nursing Home room started Hospice just this past weekend.  Norma has had Dementia for 10 years already and is so far gone she is unable to  form any real words.  She is also Stage 4 Breast Cancer, inoperable.  Sunday she began gasping and went pale.  Hospice already has orders to administer morphine when/if breathing becomes labored, the drug did calm her breathing and with the O2 line on she regained color.

The Neighbor up the road that I usually take to Dialysis with me also recently started Hospice at home.  They did replace his bed and brought him an O2 Concentrator for those times he needs it.  I don't know yet  how often they visit him at home.   Oh, and his Wife tells me that particular Hospice Company either has a hospital or is related to a hospital so when he gets that near the end she can hospitalize him instead of keeping him at home.  So they do yet have some choices.

Like most people having no prior experience with Hospice we know virtually nothing.  I called the local Hospital to ask and was transferred top Hospice.  So that is the Company providing services for Patsy.  Since then I have learned that there are 2 MORE Hospice Companies in the area.   I had no idea.  I am not going to change since they all pretty much provide all the same services.

That's pretty much everything I know.   I hope it helps.

Norma, Patsy's roommate, initially has part-time care at home, over the last ten years that progressed to full 24 hour care up until just two weeks ago, I don't know what triggered the move to the Nursing Home.  She does have a Husband at home so it wasn't like a single person at home.  They have local Sons and Daughters so there was always people around her.

Like you, it is just me.  Well, and the Cats.  My Dog decided he Loves Daughter as much as he loves Gramma so he has been living with Dau for the last 4 months instead of coming home with me.   But there will come a day when I will be having to make the very decisions that you are thinking about now.

I am sure your Positive attitude is what got you this far already.   Don't be too quick to give that up yet.

I rarely gamble, I can't afford to lose.  But I am quite sure that you are a whole lot stronger than you think you may be.   You wouldn't be here now if you weren't.  Much the same for all of us on Dialysis.

Are you using Ico for an all-day dwell yet?   I did my whole 3 1/2 years on PD and I often had an additional 500ml take-off with it.  I always had a 2 L fill.  My Cycler was set Tidal but had a bunch of cycles with relatively short dwells so the sugar content remained high, taking off more.

I talk too much and can't shut up.

[kickingandscreaming]

Thank you, Charlie.  It is interesting to read all this.

I can't do all-day dwells.  I'm a high average transporter.  Many short dwells.

[SooMK]

I have no advice K&S but wish you well. My father had hospice (for lung cancer) and was able to die at home but my siblings were able to be with him. I hope you can figure out something like the assisted living that Blake suggested. I always hope I will have the courage when the time comes to make a decision like hospice. I have to say the political situation weighs on me, too, so that there's a few moments every day when I can't help but think I'd like to be well out of it. I hope you can find a solution that keeps you with us.

[Charlie B53]

The Icodextriin is a totally different type of sugar solution that is NOT absorbed into the body and does not raise blood sugar in diabetic renal patients.

However, that small amount that is absorbed can skew most blood sugar meters and give a false high sugar.

For this reason I was issued a One Touch Meter

This alternate solution works well for a long dwell, all day for those using a Cycler, or all night for those doing manual exchanges.

I had very good fluid removal using Ico for 12 hours.

Body size can limit fill amounts, but the theory remains the same.

Your team should have explained all of this.

[PrimeTimer]

Are you able to have a chest cath for dialysis installed? I am not suggesting that you get one, just asking if you ever had one or if you know as to whether or not you could have one. And what about a fistula? Just asking. I know how you feel about hemodialysis.

Another question (I am nosey today, sorry but you might have to get use to it...the new me): Have they checked your Oxygen Saturation Level and do you know what level you are at? You can buy an Oximeter for your finger under $20 at a drugstore or online. I don't know if they want you to be on it or if you've ever been on O2 at home but it's given me considerable strength and breath back. I don't care about wearing a tube up my nose, I'd rather feel better and the O2 makes me feel better. I'm not ready to do all the chores yet but feeling alive and being able to breath without grabbing for something to hold onto is big progress. Wondered if O2 may help you. Personally, I don't think you need hospice, I think you need help.

[Charlie B53]

I don't doubt that every one of us living with a major medical problem also live with a certain amouont of Depression.

How we handle that Depression makes the difference.

Medication can help some individuals, but I thinkk personal attitude and determination can have far more effect.

I don't know enough to be of much help to another person other than to keep asking questions of your medical team.

As I undeerstand it, Hospice steps in as a patient is nearing their end, even if that end may be months yet away.  Their primary goal is comfort care.

Physical comfort is one thing, but the mental aspect, what a person is going through, I can only try to imagine.  It cannot be easy.

I like to Believe that my life has a greater purpose.  What that is I don't have a clue.  But I do Believe in a greater Power that does watch over me, and does have a purpose for me.  And that I will live here on this Earth until His Purpose is fulfilled.

Knowing this I don't have to worry about how much time I have.

It's not My Will, but Thy Will be Done.