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recommendations on hospice care

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1 recommendations on hospice care on 3/9/2018, 10:33 pm

It appears that my demise is accelerating and in the event that I cannot make it back to Illinois, I would like some recommended options for hospice.

I have already met with the hospice folks in Illinois, but everything which is happening now appears to indicate that making it to mid April is going to be very difficult as I lose mobility. The bone mets are going a bit crazy and all systems are acting very strange as the pain increases. No pain has been unbearable, but I am having trouble twisting my body as the liver and kidneys are now very painful to any twisting and the tailbone met has become quite painful again after doing pretty good for four months since I have been on the bone injections. Regardless, I had a wonderful day today and even drove the car because birthday girl was drinking........each day becomes more special.

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2 Re: recommendations on hospice care on 3/10/2018, 3:30 am

Very sorry to hear all this, which is quite a contrast from the birthday pizza post I just read and responded to.  

I'm not really qualified to make a recommendation as I don't have any first-hand experience with hospice here, but I've heard that Emerald Coast Hospice (now an affiliate of Kindred), is good.  They are located on Stewart Street in Milton, phone 994-5665, which may be simply an office.  I don't know whether they have actual residence facilities up there (though, come to think of it, you haven't specified whether you'd prefer to stay in your own place).

Covenant Care is also a reputable firm in the area.  Their Milton office is on Caroline St, phone 202-5930.   They have several residence facilities in the Pensacola area; again, am not sure about actual facilities up your way.

Wish I could be of more help.  Also wish you weren't facing this.

Just heard this afternoon that a close neighbor, a retired top IBM sales engineer who has long suffered with Parkinson's and is now deteriorating badly including dementia, will soon be moving into the memory care unit of The Residence, a Covenant assisted living facility up near West Florida Hospital (north side of Pensacola).    

Though it's great (and admirable!) that you're still finding some joys in life, from here it all looks pretty sucky sometimes.   My own (older) husband has been showing some early signs of impending dementia for a couple of years now, and his older sister died with Alzheimer's a couple of years back, so I'm getting a little scared.  My mother died of complications from that horrid disease, so I know only too well what we may be facing in the not-too-distant future.

Sorry, this was about you, not me.  

Keep us in the loop.  Hate that you're hurting.  You deserve some respite, and soon.

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3 Re: recommendations on hospice care on 3/10/2018, 8:28 am

I'm sorry to hear of both of your troubles. I do know some people in the pcola hospice. Excellent at what they do and truly good people. One I've known for thirty years. I'd trust them completely.

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4 Re: recommendations on hospice care on 3/10/2018, 11:19 am

2seaoat wrote:It appears that my demise is accelerating and in the event that I cannot make it back to Illinois, I would like some recommended options for hospice.

I have already met with the hospice folks in Illinois, but everything which is happening now appears to indicate that making it to mid April is going to be very difficult as I lose mobility.  The bone mets are going a bit crazy and all systems are acting very strange as the pain increases.  No pain has been unbearable, but I am having trouble twisting my body as the liver and kidneys are now very painful to any twisting and the tailbone met has become quite painful again after doing pretty good for four months since I have been on the bone injections.  Regardless, I had a wonderful day today and even drove the car because birthday girl was drinking........each day becomes more special.

I just checked, Seaoat. Kindred Hospice has a Ft. Walton Beach office that serves Navarre...also offices in Pensacola and Milton. Call 1-866-546-3733.


https://www.kindredhealthcare.com/locations?services=ab41c75d-dafd-66f3-a486-ff0000603144&city=pensacola&state=FL

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5 Re: recommendations on hospice care on 3/10/2018, 6:26 pm

FT, the Emerald Coast Hospice Milton phone I gave Sea is part of that exact same Kindred network, as I'd said. Bring up their location map and you'll see the Milton location 'arrow'.

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6 Re: recommendations on hospice care on 3/10/2018, 6:35 pm

Like pkr, Linda and FT I am saddened by this post but not surprised, I have noting notable to say except to say I wish you continued strength and to ask you post as long as possible.

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7 Re: recommendations on hospice care on 3/10/2018, 7:20 pm

We used Hospice home health for my dad. This was years ago. I did not want them doing my dad's care; I just wanted the supplies they provide.

I am very saddened to read this. Do you have a local physician ?

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8 Re: recommendations on hospice care on 3/11/2018, 10:54 am

RealLindaL wrote:FT, the Emerald Coast Hospice Milton phone I gave Sea is part of that exact same Kindred network, as I'd said.  Bring up their location map and you'll see the Milton location 'arrow'.

I have used Kindred at Home twice in the past year...the last time included daily IV antibiotics and a wound vac. I highly recommend them.

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9 Re: recommendations on hospice care on 3/12/2018, 8:55 am

Damn. Sorry for the setback. You deserve better than nature's giving you. I'll be hoping for improvements that'll get you more time.

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10 Re: recommendations on hospice care on 3/12/2018, 11:34 pm

I think we will return to Illinois sometime Sunday. My grandkids are coming down a week from this Friday. I had hoped I could enjoy the beach with them for that week, but I am in serious trouble now. I will not go into the detail, but hope I can get a handle on the liver failure which seems to be accelerating. I get my shots on Wed., but I may just stay in Illinois rather than return. We will check out in home hospice if we return. I appreciate everybody's help, but I will need some kind of miracle to pull out of this tailspin. Nothing which was not expected, but I had hoped for the three to six month estimate, and at this rate I will be lucky to get three months. When it is your time, it is your time. It was a good fight, but my body is tired.

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11 Re: recommendations on hospice care on 3/13/2018, 1:27 am

It was a good fight, for sure.   If you can, please let us know sometime before you leave for IL, that you're definitely going.  A darned shame you can't be with the grandkids on the beach this one last time but, from everything you're saying, coming back again now would seem...well....a fool's errand, for lack of a better term.  You've left them great memories of past beach sojourns.

These end stage problems must be pretty awful if you've come to, as you've said, sense a loss of control over the disease's direction/progression for the first time in ten years.   That says a lot, coming from you.

How I wish we could fix it...

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12 Re: recommendations on hospice care on 3/13/2018, 1:43 am

These end stage problems must be pretty awful

They are not awful, but my wife was crying today because she would hear me let out yelps when picking up pickets for a fence.  She was on the phone, when she asked the person to give her thirty seconds.  Look, dying is not that bad, but it is horrible for your caretaker, and the people who love you.  My daughter has called and is talking about coming down as she is freaking, and my son got a flight to come down a day early to help us with some things, but I do not know if I will make it back down for the week on the beach.  I am most comfortable in the sitting position in the car with heated leather seats which seem to quell the liver pain, and I will probably start using opiates, but that will start a process I want to postpone because they effect the liver.

I am trying not too be to graphic with this decline, but as the doctor told me I eventually will not be able to get out of bed.  Z and I sent many PMs talking about the process of losing your legs and mobility.  Z had courage and it made me feel very good that he shared the same with me, and when Bob was having problems, he shared with Bob his situation.  I still am mobile, but the pain on every twist, turn, or getting up from my lazy boy, a chair, getting out of the car, and getting off the toilet are very painful.  Our toilet in Illinois is a HDCP toilet and we have grab bars which make my getting around the bathroom easy with the decline......once up, you probably would look at me at Lowes, and not even realize how sick I am, until I start to walk.  I am having six bowel movements a day and they are very unpleasant and can be explosive with no notice.  One minute you are doing well, and literally one minute later you are rushing off to the bathroom.  Again, this is all expected and understood.....and so far nothing I cannot handle, but for how long.......we will see.

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13 Re: recommendations on hospice care on 3/13/2018, 2:04 am

It is ironic that six years ago we upgraded our bathroom so my wife's mother could live with us. At ninety she did real well with our bathroom set up. However, we warned her to stay out of the laundry room because it had a step down. She did not listen and ended up being in the hospital for a week, and upon going to a nursing home to recover, she freaked and lost her mind. She spent the next two weeks in a psych ward until they could get her medicated. She lived two more years in nursing home care with four ladies from her home town. She actually had a good two years in nursing care, and then bam.......lights out and she was gone in a week. We each have a path out of this life. Z at the end did not want his wife and daughter to be around.....I get that......and hope I have the clarity that Z had.

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14 Re: recommendations on hospice care on 3/13/2018, 5:30 am

Thinking of you with a heavy heart. Had my knee done yesterday morning and the nurse brought me my first pain pills a few minutes ago. I did request a Toradol injection to be given intra-op and that really helped. Thankfully they now use a lpump with a numbing medication inserted into the knee by the Anesthesiologist in pre-op. The medication covers the anterior medial leg. So the posterior pain got rough this morning. I know a teeny-tiny bit about the liver pain. I still have a little discomfort in that area also.

Take care and spend time with all your babies.

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15 Re: recommendations on hospice care on 3/13/2018, 9:00 am

I'm glad you're recovering Joani and that the surgery went well. Hang in there seagoat. Hopefully spring and your next shot will pep you up.

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16 Re: recommendations on hospice care on 3/13/2018, 11:09 am

Joanimaroni wrote:Thinking of you with a heavy heart. Had my knee done yesterday morning and the nurse brought me my first pain pills a few minutes ago. I did request a  Toradol injection to be given intra-op and that really helped. Thankfully they now use a lpump with a numbing medication inserted into the knee by the Anesthesiologist in pre-op. The medication covers the anterior medial leg. So the posterior pain got rough this morning. I know a teeny-tiny bit about the liver pain. I still have a little discomfort in that area also.

Take care and spend time with all your babies.

My mom had a knee replaced a year or so ago and got a ton of mobility back from it. The healing time wasn't too bad, but she did have to take some pain pills for a while. Later she had to get her ankle replaced on the other side because her new knee being straightened up revealed that she'd been compensating with the other ankle... but, that replacement went even easier. She was very glad that she did both.

Anyway, hers went without much trouble and she got a lot of benefit from it -- like night and day, so, hopefully yours will heal up quickly and give you similar good results. There's some pain, but it should prove worth it.

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17 Re: recommendations on hospice care on 3/13/2018, 1:17 pm

Medical miracles have become commonplace. I always wished Butkus had orthopedic folks who knew how to fix a knee. Today the worst knee damage can be fixed like putting new shocks on a car. I know all the folks who have had knee replacements, and not one regrets the same despite the pain. The key is knowing things will get better. I am bed ridden today. I will try to stay stationary all day in hopes that a plateau can be found. The good news is that my bad right knee will never get repaired, as I do not do well not getting around. Broke an ankle in a basketball game and doing my job on crutches for four weeks wakes you up to how much you take mobility for granted. I think the only time in my life when I started to get a little depressed was not being able to play ball and get around. The first thing I noticed was how weak my upper body was when I could no longer depend on my legs. I am curious as to whether you used the Andrew Institute? Folks from all over the country come to have that team work on them.

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18 Re: recommendations on hospice care on 3/14/2018, 1:55 am

Andrews is terrific. Haven't had to use them for joint surgery (at least not yet), other than a carpal tunnel and cleanup procedure on my husband's arthritic wrist a few years back. But we've used their surgical facilities for several other procedures including cataract surgeries/lens replacements for both of us. They are a far more efficient and smooth-running team than any other outpatient surgical facility we've ever patronized, much less any hospitals, and from what I can tell the participating doctors are virtually all among the top notch crowd in our area. Highly recommended.

I, too, would be interested to know if Joani had her work done there. Wish her a speedy and easy recovery in any event.

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