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Author Topic:  I'm Around but Side Tracked at Moment  (Read 890 times)

Offline Jared

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I'm Around but Side Tracked at Moment
« on: August 11, 2017, 10:59:04 AM »
I want to apologize to everyone for being somewhat MIA the last few weeks.

Mom went in the hospital beginning of July for Pneumonia and when that happened it shed a lot of light on some major issues.

First of all, hospice missed the pneumonia diagnosis completely. For weeks and weeks they assumed it was a UTI. Me, not knowing any better, went along with it because I knew she had a few UTI's in the past.

When I moved to SC we had to find a new doctor for Mom. One of the doctors we spoke to mentioned hospice to us. I was completely against it because I had always heard hospice was for the dying. However, this hospice company explained it differently (they mislead me) and told me that they could have Mom on palliative care. They also said that if they accepted Mom in hospice because of her dementia that the hospice doctor would be who she had to see for that diagnosis but any other diagnosis (heart, kidney, lungs, etc...) she could see any other doctor we wanted.

Well, when I called the ambulance to bring her to the ER beginning of July I learned that they were full of it. The EMT told me they couldnt take her to the hospital because she was hospice. I convinced them otherwise and they took her. Then when we got to the hospital the doctors gave me all sorts of hassle because Mom was hospice. Fortunately I am her Durable Power of Attorney. I told them they are to treat her as they would treat their own mother, father, spouse, child and do all that is necessary to make her as healthy as she could be.

We made it through that mess and the doctors treated Mom and cured the pneumonia.

Although because of the meds they had Mom on in the hospital (lasix - used to remove the fluid that the pneumonia placed in her lungs) ended up causing her kidney levels to rise. So the doctors stopped the lasix right away. Mom seemed great for a few days then almost a week later she was having breathing issues again. I had to taken to the hospital again. I had to go through the same crap again with the EMT and the new doctor at the hospital, not wanting to treat Mom because of her hospice status. But once again I convinced them to do their job and take care of Mom. I soon found out that if lasix is stopped abruptly it can cause the kidneys to overcompensate and start stockpiling fluid again. That is exactly what they did on her first hospital trip a week earlier.

So the doctor gave her lasix to bring home.

I knew her kidney levels would rise again so I had a local doctor do blood work on her a week after coming home from the hospital again. Her kidney levels were high again. So I mentioned it to hospice.

Hospice was blaming the fluid build up on her CHF. They told me that they were going to have Mom on the lasix for the rest of her life.

They told me that they were not worried about her kidneys at all.

I objected and asked how could a doctor who has NEVER seen Mom once throw out diagnosis and plans of treatment?
Hospices opinion of her high kidney levels and the indefinite lasix treatment were the final straw.

So I refused to let Mom stay on hospice another moment. I fully believe Mom has many more years to go and hospices attitude of making patients comfortable rather than curing would only do one thing - make sure her life was cut short.

The charge nurse from hospice visited us. I explained to her my feelings on hospice. She explained how things would move forward if I decided to revoke hospice. I asked if they would just take away Mom's oxygen. She said they would not leave Mom high and dry with nothing. I also explained how I had Mom on a patience assistance program for her Namenda (dementia meds) because even with her insurance it was an expensive drug. (hospice took over supplying that med) She assured me that they would make sure that Mom had enough meds until a doctor could get her set again.

Ok. That all sounded good.

I signed all the papers to revoke hospice.

I soon learned that what the charge nurse told me was a bunch of crap! Hospice was planning on coming and getting all of Moms equipment immediately. Fortunately the medical supply company called me first and they more compassionate than hospice. They have given me the time needed to get replacement O2 equipment in place before they take her current supplies away.

I still have no idea what to do about her Namenda meds. I cant take her to a doctor until Medicare gets the hospice status off her files. I am learning this takes some time. Figures! No doctor will see Mom until she no longer shows as hospice. So we are pretty much up the creek concerning her meds. Fortunately we still have a week or so of them left.

And that leaves me where I am today. Scrambling to get this stuff in place.

It has left me very little time and energy to focus on Fishinpedia currently.  I was suppose to be working media in Columbia SC this weekend covering The FLW Forrest Wood Cup on Lake Murray. That's not possible now though. I am only grateful that it was the FLW Cup that I had to miss and not the Bassmaster Classic. Fortunately that is several months away still.

Anyway, with all that said, Mom is doing SO MUCH better now that she is off Hospice. I stopped the permanent antibiotics hospice had her on when they thought she was having back to back UTIs rather than properly diagnosing her pneumonia. Then last weekend I slowly weened her off the lasix so her kidneys dont try to overcompensate again. She hasnt had lasix in a week now. The past 3 days her energy has been skyrocketing! She has been able to walk around our yard without any shortness of breath or fatigue. She is getting up all the time to look out the windows or see the baby. She is so lively and her thoughts are much more clear.  I am 110% positive this would not have been possible had we stuck the course with hospices game plan.

September 7th I have Mom an appointment with what I have been told by many different people is the best geriatric doctor in the area. It took me about 6 months to get Mom in with this new doctor but it's finally going to happen!

So anyway, thank you for understanding.

I will be back to my 100% on Fishinpedia within the next few days. I have many projects to finish and many contests to get rolling inluding one that will giving the lucky winner a $250 RPM custom made baitcast rod (designed and built by 6 time Bassmaster Classic qualifier Rick Morris) paired with a reel spooled with the fluorocarbon all  wrapped in a matching Rod Glove



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Offline Muddy

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Re: I'm Around but Side Tracked at Moment
« Reply #1 on: August 11, 2017, 11:09:11 AM »
FAMILY FIRST, our greatest  gift. I will keep you all in my prayers, More important to be a son than the owner of a fishing site. Be well I have lost both my parents, care for our elderly parents is always difficult, but we get to repay them for they have given us.
Fishing, It's not a job, it's not competition, it's just a groove

Offline lipripper

Re: I'm Around but Side Tracked at Moment
« Reply #2 on: August 11, 2017, 11:27:08 AM »
Jared don't worry about it. Your Mom comes first and will keep y'all in my prayers every day. 

Offline pascatII

Re: I'm Around but Side Tracked at Moment
« Reply #3 on: August 11, 2017, 02:00:49 PM »
Jared, glad to hear your mother is back to feeling better.  We understand your situation and are proud that you place your mother first.

My wife is suffering from dementia.  It is not easy seeing someone you love going through all that this disease has to offer:
     Memory loss.
     Trouble speaking (the words are there but can't make it to the tip of the tongue)
     New homes for the clean dishes...(I find my coffee cup in a new cupboard every day)
     Anger.
     Short attention span.
     OCD like rituals...pulling weeds from the yard every day,  washing clothes even if there are only a few items.
     And the list goes on...

It is hard to find time for ourselves when caring for someone with dementia.  You should be commended for all you are able to accomplish with your dreams all the while maintaining a comfortable and dignified life for your mother.

Amen Brother!  Keep up the great work!


Offline Jigfishn10

Re: I'm Around but Side Tracked at Moment
« Reply #4 on: August 11, 2017, 02:52:25 PM »
No problem buddy, we know what and who is more important. Take care of business at home.

@lipripper is here to mind the store...Oh wait a minute, that may not be a good idea. :lmao:

J/K, my fingers are crossed for you and you mom. :fingers-crossed:

Offline lipripper

Re: I'm Around but Side Tracked at Moment
« Reply #5 on: August 11, 2017, 04:24:09 PM »
No problem buddy, we know what and who is more important. Take care of business at home.

@lipripper is here to mind the store...Oh wait a minute, that may not be a good idea. :lmao:

J/K, my fingers are crossed for you and you mom. :fingers-crossed:
Yelp I will keep my good eye on the candy dish.  :rofl:

Offline rivermandave

Re: I'm Around but Side Tracked at Moment
« Reply #6 on: August 12, 2017, 10:02:47 AM »
I want to apologize to everyone for being somewhat MIA the last few weeks.

Mom went in the hospital beginning of July for Pneumonia and when that happened it shed a lot of light on some major issues.

First of all, hospice missed the pneumonia diagnosis completely. For weeks and weeks they assumed it was a UTI. Me, not knowing any better, went along with it because I knew she had a few UTI's in the past.

When I moved to SC we had to find a new doctor for Mom. One of the doctors we spoke to mentioned hospice to us. I was completely against it because I had always heard hospice was for the dying. However, this hospice company explained it differently (they mislead me) and told me that they could have Mom on palliative care. They also said that if they accepted Mom in hospice because of her dementia that the hospice doctor would be who she had to see for that diagnosis but any other diagnosis (heart, kidney, lungs, etc...) she could see any other doctor we wanted.

Well, when I called the ambulance to bring her to the ER beginning of July I learned that they were full of it. The EMT told me they couldnt take her to the hospital because she was hospice. I convinced them otherwise and they took her. Then when we got to the hospital the doctors gave me all sorts of hassle because Mom was hospice. Fortunately I am her Durable Power of Attorney. I told them they are to treat her as they would treat their own mother, father, spouse, child and do all that is necessary to make her as healthy as she could be.

We made it through that mess and the doctors treated Mom and cured the pneumonia.

Although because of the meds they had Mom on in the hospital (lasix - used to remove the fluid that the pneumonia placed in her lungs) ended up causing her kidney levels to rise. So the doctors stopped the lasix right away. Mom seemed great for a few days then almost a week later she was having breathing issues again. I had to taken to the hospital again. I had to go through the same crap again with the EMT and the new doctor at the hospital, not wanting to treat Mom because of her hospice status. But once again I convinced them to do their job and take care of Mom. I soon found out that if lasix is stopped abruptly it can cause the kidneys to overcompensate and start stockpiling fluid again. That is exactly what they did on her first hospital trip a week earlier.

So the doctor gave her lasix to bring home.

I knew her kidney levels would rise again so I had a local doctor do blood work on her a week after coming home from the hospital again. Her kidney levels were high again. So I mentioned it to hospice.

Hospice was blaming the fluid build up on her CHF. They told me that they were going to have Mom on the lasix for the rest of her life.

They told me that they were not worried about her kidneys at all.

I objected and asked how could a doctor who has NEVER seen Mom once throw out diagnosis and plans of treatment?
Hospices opinion of her high kidney levels and the indefinite lasix treatment were the final straw.

So I refused to let Mom stay on hospice another moment. I fully believe Mom has many more years to go and hospices attitude of making patients comfortable rather than curing would only do one thing - make sure her life was cut short.

The charge nurse from hospice visited us. I explained to her my feelings on hospice. She explained how things would move forward if I decided to revoke hospice. I asked if they would just take away Mom's oxygen. She said they would not leave Mom high and dry with nothing. I also explained how I had Mom on a patience assistance program for her Namenda (dementia meds) because even with her insurance it was an expensive drug. (hospice took over supplying that med) She assured me that they would make sure that Mom had enough meds until a doctor could get her set again.

Ok. That all sounded good.

I signed all the papers to revoke hospice.

I soon learned that what the charge nurse told me was a bunch of crap! Hospice was planning on coming and getting all of Moms equipment immediately. Fortunately the medical supply company called me first and they more compassionate than hospice. They have given me the time needed to get replacement O2 equipment in place before they take her current supplies away.

I still have no idea what to do about her Namenda meds. I cant take her to a doctor until Medicare gets the hospice status off her files. I am learning this takes some time. Figures! No doctor will see Mom until she no longer shows as hospice. So we are pretty much up the creek concerning her meds. Fortunately we still have a week or so of them left.

And that leaves me where I am today. Scrambling to get this stuff in place.

It has left me very little time and energy to focus on Fishinpedia currently.  I was suppose to be working media in Columbia SC this weekend covering The FLW Forrest Wood Cup on Lake Murray. That's not possible now though. I am only grateful that it was the FLW Cup that I had to miss and not the Bassmaster Classic. Fortunately that is several months away still.

Anyway, with all that said, Mom is doing SO MUCH better now that she is off Hospice. I stopped the permanent antibiotics hospice had her on when they thought she was having back to back UTIs rather than properly diagnosing her pneumonia. Then last weekend I slowly weened her off the lasix so her kidneys dont try to overcompensate again. She hasnt had lasix in a week now. The past 3 days her energy has been skyrocketing! She has been able to walk around our yard without any shortness of breath or fatigue. She is getting up all the time to look out the windows or see the baby. She is so lively and her thoughts are much more clear.  I am 110% positive this would not have been possible had we stuck the course with hospices game plan.

September 7th I have Mom an appointment with what I have been told by many different people is the best geriatric doctor in the area. It took me about 6 months to get Mom in with this new doctor but it's finally going to happen!

So anyway, thank you for understanding.

I will be back to my 100% on Fishinpedia within the next few days. I have many projects to finish and many contests to get rolling inluding one that will giving the lucky winner a $250 RPM custom made baitcast rod (designed and built by 6 time Bassmaster Classic qualifier Rick Morris) paired with a reel spooled with the fluorocarbon all  wrapped in a matching Rod Glove
No worries. Family first Jared...especially Mom.

I wish I had been able to talk to you about hospice / nursing homes ahead of time. My Mom was in one here for 14+ years. 72 yo when she went in as she would have occassional "psychotic" episodes. She also had UTI's.

Unless you have a REALLY good primary doctor, you will have issues from here on out. The percentage of "pill pusher doctors" has grown these days, even with the publicity from the kick-backs from the pharmaceutical companies. And the vast majority of docs not only don't have much knowledge about drug interactions, but they also don't realize that each person's body chemistry is different, which can make a huge difference, especially with the UTI's. Many folks can't handle full "prescribed" doses.

Some meds require a week or more of "weening".

Do a search for this word string........"dementia" + "music" + "treatment"

Music can make a world of difference for folks dealing with such. I'm not saying to get a therapist, but at least do some research on the topic, and let her have as much music as possible, including an iPod or even an older CD / cassette Walkman.

Mom's psychotic episodes were due to spiritual / Christian issues of not forgiving. I told the story on my FB page, but you probably don't remember.

:innocent: :innocent: :innocent:

Offline iamski

Re: I'm Around but Side Tracked at Moment
« Reply #7 on: August 12, 2017, 10:43:55 AM »
Jared Take care of Mom first we can wait. I know what your going through. Things are getting better with wife. Can see a light at end of tunnel now.
Everyone has to believe in something. I believe I'll go Fishin.

Offline bassmedic46

Re: I'm Around but Side Tracked at Moment
« Reply #8 on: August 22, 2017, 07:28:54 PM »
Family first, it stinks that our healthcare system is so screwed up. One of the many reasons I left work as a paramedic.
Take a kid fishing so they get outdoors.

Offline bassmedic46

Re: I'm Around but Side Tracked at Moment
« Reply #9 on: May 23, 2018, 10:15:16 AM »
Good morning everyone, looks like it’s going to be a good day. I hope everyone has a great day and tight lines to those on the water.

Tags: dementia sucks 

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