Join Early Retirement Today
Reply
 
Thread Tools Search this Thread Display Modes
My Mom's Advanced Heart Failure
Old 05-11-2018, 01:12 AM   #1
Thinks s/he gets paid by the post
Katsmeow's Avatar
 
Join Date: Jul 2009
Posts: 4,203
My Mom's Advanced Heart Failure

This thread is mostly about expressing my frustration at finding it so hard to get clarity on my mom's prognosis. Specifically, how close it is to the end and what to expect. (apologize for the length but a lot has happened the last 2 months). I do have my mom's health care POA and the rehab she is in will talk to me.

My mom is 94 and has advanced heart failure, as well as Type II diabetes and kidney disease. Despite having all these problems for years, she was actually doing pretty well until a couple of months ago. She was living on her own. She has no dementia and was doing everything for herself. Through the years we have asked her to move in with us many, many, many times but she always refused. She liked her independence and said she wouldn't do it until she had to. During all these years, I've lived about 250 miles from her.

A little over a month ago, we sold our house and moved to her area (not so much because of her specifically -- we have other family/friends in the area as well). We are in a short term apartment rental while waiting to close on the house we have under contract.

During the past several years, my mom's heart failure has given her few problems. She had some swelling of her feet and exertion would tire her. She walked slowly, but that was all. The diabetes took most of the effort in her health management.

About 2 months ago, she went to the ER due to shortness of breath. She was hospitalized for several days then went to rehab for 2 weeks. All of this was before we moved here. I saw her in the hospital and rehab a couple of times during visits. About the time we moved here, she was discharged home from rehab. For the first time, she was using oxygen. She had home health care coming 3 times a week.

Two days after she arrived home we went to visit her and found her on the floor in her kitchen. She had gotten dizzy due to low blood sugar and had fallen. She didn't break anything but couldn't get up (too weak). I called 911 and she went back to the ER. They got her blood sugar up but kept her there because she was too weak to get up or to walk. After a few days in the hospital, she went to a different rehab. That was about a month ago. She is still there. They are saying she will be discharged soon (not so much because they think she is ready but they think Medicare will turf her out).

Before she went to the rehab, her regular doctor called me. She said that my mom is in a slowly declining condition. She says it isn't a fast decline. It could become fast if she got an infection or something else happened. She didn't think my mom would get back to where she was before she was hospitalized. But, she felt she might be able to improve enough in rehab to come live with me. If not, she would need to go to a nursing home.

I asked her where she saw this all going. She was somewhat helpful. She said she hated the question because it is so difficult to know for sure. She did say that if my mom didn't improve then hospice was an option. She also said that she wasn't sure if my mom could handle "aggressive physical therapy" and that she might need or want palliative care. She said that if my mom went to rehab the doctor there could order palliative care if she wanted it. She did feel my mom might improve to be mobile enough to live with us but she didn't think my mom should live at home. She eventually more or less said that she expected my mom to live 6 months to a year although it could be less if she got an infection or something else occurred. And, it could potentially be more if she improved.

I don't know if any of this was discussed with my mom. i don't think it was (I think the part about her living situation was but not the prognosis/hospice/palliative care part). My mom does know that her heart failure isn't curable.

That conversation was at least helpful. Since then, it has been frustrating to try to figure out her current prognosis. She started out doing fairly well at rehab. She did therapy and went from being able to walk 10 feet to walking 160 feet (with the walker). On the other hand, she has had almost no appetite and refuses to eat meat (her doctor had said one of the reasons she wasn't getting stronger was because of not eating enough protein). Also, she still has a lot of swelling. She has gained 6 pounds which is clearly all fluid as she is barely eating.

About 2 weeks in, she got a mild case of pneumonia. On the one hand, it was a very mild case and she was recovered from it. On the other hand, since she got it she has become much weaker. Before the pneumonia she was spending most of the day sitting up in a recliner. Now, she stays in bed the entire day except when she goes to therapy or the bathroom.

She still wanted, though, to go home. The facility did a home evaluation today and recommended against her going home alone. She finally acquiesced to moving in with us "until she gets stronger." It is fairly clear she won't get stronger. She actually moves fairly well with her walker when she gets up. But, she has a lot of trouble getting up. Also, sometimes she can't get her feet up on the bed (not enough strength). Other days she can.

I can't seem to get any clear information about, well, where this is going with her. I mean, I know that she won't survive this. But, I'm not sure if the 6 months to a year is still operative or if she is declining more rapidly. And, I'm not sure how to find out. There are a couple of nurse practitioners who come by each day and check her. There is supposedly a physician who sometimes comes by but I haven't seen him. Whenever a nurse practitioner has come by my mom is always there. I honestly don't think she realizes how dire her situation really is.

Yesterday, I called my mom on the phone and she asked me to call back later. She told me later that she had been too weak to talk to me. She says everything tires her even brushing her teeth. That was the day she agreed to temporarily move in with us.

I am uncertain whether palliative care should be considered at this point. Basically I don't want my mom to be made uncomfortable with attempts at therapy or trying to get her to eat if she is beyond the point of any of it helping her. At the same time, I don't want to assume that she is beyond that point if she isn't. I know she is starting to get very tired.

If she was being treated by her regular doctor (who has seen her for the last few years) I would talk to her. But, in the rehab situation with someone who does a cursory check each day (and it varies who does it each day) it is harder to find out information. I do have the number of the nursing director. She came in my mom's room once to talk about her discharge plans (at that time my mom was still wanting to go home alone). So, I could call her.

In a sense I'm not really sure what to ask. I guess I want to know what is expected to happen and when and see if that affects what my mom should be doing going forward. But, I'm having a hard time figuring out who to ask (if anyone). I had that good conversation with her doctor which did help, but since then there has been nothing so I don't know if that timeline is still operative.

I remember when my dad died. He was in the hospital for months before he died. In retrospect, it is obvious that he was dying. But, it was never discussed at the time. He was never in hospice. When he went from being treated to being dead 3 days later, it was a big shock. Looking back on it, I think that could have all been handled much better but he was on that treadmill of treatment and I don't think anything else was every even discussed.
__________________

Katsmeow is offline   Reply With Quote
Join the #1 Early Retirement and Financial Independence Forum Today - It's Totally Free!

Are you planning to be financially independent as early as possible so you can live life on your own terms? Discuss successful investing strategies, asset allocation models, tax strategies and other related topics in our online forum community. Our members range from young folks just starting their journey to financial independence, military retirees and even multimillionaires. No matter where you fit in you'll find that Early-Retirement.org is a great community to join. Best of all it's totally FREE!

You are currently viewing our boards as a guest so you have limited access to our community. Please take the time to register and you will gain a lot of great new features including; the ability to participate in discussions, network with our members, see fewer ads, upload photographs, create a retirement blog, send private messages and so much, much more!

Old 05-11-2018, 02:29 AM   #2
Full time employment: Posting here.
swakyaby's Avatar
 
Join Date: Feb 2011
Location: central California
Posts: 501
Katsmeow,
Iím so sorry you are going through this. These are very tough times, heartbreaking, and full of uncertainty. I think your momís primary care doctor explained as much as she could, in as sensitive a manner as family need to hear. When someone is in a slow decline, itís often unpredictable how much longer she has. Sheíll seem to be doing fair, then suddenly becomes weak or dizzy or disoriented, and declines further. The weakness and fatigue is often a sign of worsening congestive heart failure, if things like infection or low blood sugar have been ruled out. Her doctor probably brought up palliative care, and hospice as a prelude to the discussion of DNR (do not resuscitate). Itís hard to know just how long an ailing family member has; itís probably one of the most difficult discussions primary care doctors have with family members because of its uncertainty. It does sound like she has less than a year in her current state. But life is funny in that the will to live upsets all predictions. Iím sorry that Iím kind of rambling; I keep thinking of my own experience with my departed father. I have no answers; but I do understand your pain.
__________________

swakyaby is online now   Reply With Quote
Old 05-11-2018, 05:30 AM   #3
Administrator
MichaelB's Avatar
 
Join Date: Jan 2008
Location: Rocky inlets
Posts: 30,333
katsmeow, sorry to hear about this. It is a very difficult situation.

You might consider asking a for an assessment by a hospice physician. Their determination of eligibility should help address your questions about the course of your motherís health. It might also give you a clearer idea of what the next steps could be with her care.
MichaelB is offline   Reply With Quote
Old 05-11-2018, 06:07 AM   #4
Thinks s/he gets paid by the post
 
Join Date: Dec 2014
Location: Huntsville, AL/Helen, GA
Posts: 3,835
Times can be so difficult when a parent or loved one is in the final stages of life. We went through what you're experiencing with my mother and later with my aunt.

Mom was in a high line retirement community with 24/7 helpers watching over her. My sister essentially gave up 5 years of her life managing her healthcare, and she is yet to recover mentally from the ordeal.

My mother's sister was first in assisted living and later in full nursing home care. She was well taken care of and actually happier there than she had been in years. She had dementia the last 8 years of life but was otherwise healthy until the very end. We lost her 3 months shy of 100.

It sounds as if your mother would be better served being in full nursing home care. We as their children naturally think that we can better care for them at home, but that is seldom the case. End of life care is best left to the professionals that are equipped to handle such situations.

Just rest assured that you have been a good daughter and well cared for your mother. Don't forget that someone must also go in and break down loved one's households and liquidate possessions which can be overwhelming physically and mentally. You need to save your strength for that ordeal.
Bamaman is offline   Reply With Quote
Old 05-11-2018, 06:27 AM   #5
Moderator Emeritus
braumeister's Avatar
 
Join Date: Feb 2010
Location: Flyover country
Posts: 13,588
Quote:
Originally Posted by MichaelB View Post
You might consider asking a for an assessment by a hospice physician. Their determination of eligibility should help address your questions about the course of your motherís health. It might also give you a clearer idea of what the next steps could be with her care.
+1
This could be very helpful.
__________________
I thought growing old would take longer.
braumeister is offline   Reply With Quote
Old 05-11-2018, 07:15 AM   #6
Thinks s/he gets paid by the post
Scrapr's Avatar
 
Join Date: May 2005
Location: Bend
Posts: 1,094
Quote:
Originally Posted by braumeister View Post
+1
This could be very helpful.
agreed. My FIL died at home last year. Congestive heart failure. The hospice was fantastic. It took a very hard push to get him in the hospice program. But once there they were caring and empathetic. They have a counselor for the family too. Leo was in some serious pain and they helped a lot to manage that. There are some pamplets by Barbara Karnes that are very helpful on end of life

Dad is in memory care and on hospice now too. I don't have any opinion on nursing home vs at home. Just that when Leo was at home we were able to grieve his death over about 2 weeks and say our good byes

Good luck and God bless
Scrapr is offline   Reply With Quote
Old 05-11-2018, 08:02 AM   #7
Give me a museum and I'll fill it. (Picasso)
Give me a forum ...
MRG's Avatar
 
Join Date: Apr 2013
Posts: 8,346
Quote:
Originally Posted by Scrapr View Post


There are some pamplets by Barbara Karnes that are very helpful on end of life.

Good luck and God bless
+1
Some of her stuff really helped and documented the process.

I'm sorry what your family is going through. My DM passed of CHF. She was OK until a respiratory infection caused her end.
MRG is online now   Reply With Quote
Old 05-11-2018, 08:11 AM   #8
Give me a museum and I'll fill it. (Picasso)
Give me a forum ...
 
Join Date: Sep 2005
Location: Northern IL
Posts: 21,839
Quote:
Originally Posted by MichaelB View Post
katsmeow, sorry to hear about this. It is a very difficult situation.

You might consider asking a for an assessment by a hospice physician. Their determination of eligibility should help address your questions about the course of your motherís health. It might also give you a clearer idea of what the next steps could be with her care.
Agree to this as well. The path is just not all that predictable, I imagine the doctor is telling you what she can. But the hospice people are routinely seeing this carried out to the end, so their assessment could be valuable.

A word on hospice providers - our families have had good and terrible experiences. With my Mom, the hospital was 'pushing' the organization that DW's family had a bad experience with, but I figured each separate group could be different. But when we talked with them, we got the same feeling that they were incompetent at everything, including communication.

So I talked to the head nurse at DM's assisted living place, and the nurse had a definite positive opinion of a different hospice group. We met with that hospice group, and it was night and day - easy to talk to, they explained what they would/could do, and they made sure it got done.

I'm sure this varies by location, so ask around, and I suspect some hospitals sort of default to a particular group, and that group may or may not be best. Try asking at some Assisted Living facilities.

Good luck with everything, I know how hard this can be - you see some progress and comfort one day, then they are back in the ER the next.

It's tough on everyone, take care of yourself as well.

-ERD50
ERD50 is offline   Reply With Quote
Old 05-11-2018, 08:30 AM   #9
Moderator Emeritus
braumeister's Avatar
 
Join Date: Feb 2010
Location: Flyover country
Posts: 13,588
You might look to see if there is a palliative care nurse available to talk to. I found one who was a great help to me for my mom, including some good unbiased opinions about available hospice resources.
__________________
I thought growing old would take longer.
braumeister is offline   Reply With Quote
Old 05-11-2018, 08:34 AM   #10
Moderator Emeritus
Bestwifeever's Avatar
 
Join Date: Sep 2007
Posts: 17,587
Since you seem to have a good relationship and respect your mother's regular doctor, I would call her and tell her your concerns and what has been going on medically with your mother and ask if she thinks her prognosis of two months ago (? can't tell where on your timeline you were told this: "She eventually more or less said that she expected my mom to live 6 months to a year although it could be less if she got an infection or something else occurred. And, it could potentially be more if she improved.") is still valid. She might advise you about hospice and palliative care vs other treatment.
__________________
ďWould you like an adventure now, or would you like to have your tea first?Ē J.M. Barrie, Peter Pan
Bestwifeever is offline   Reply With Quote
Old 05-11-2018, 08:50 AM   #11
Thinks s/he gets paid by the post
JoeWras's Avatar
 
Join Date: Sep 2012
Posts: 4,873
I'm so sorry. My Dad passed from heart failure. We got so little information about this until hospice got involved.

The doctors just wanted to keep putting him in the hospital on lasix. It became madness. Dad finally said enough. And then hospice helped us get him out so he could come home, and have a few days and then slip away.

I'll never forget the most cold-hearted thing I ever heard from a medical professional when we took him out of the care of the hospital resident. He said: "I am a doctor of the living, not death." He implied we were taking him to hospice for a euthanasia.

Sure doc. Let's keep him living a few more months in your hell hole hooked up to a lasix drip. Right...

Hospice was of our choosing and not the hospital's. They were wonderful.
JoeWras is offline   Reply With Quote
Old 05-11-2018, 08:59 AM   #12
Give me a museum and I'll fill it. (Picasso)
Give me a forum ...
 
Join Date: Sep 2005
Location: Northern IL
Posts: 21,839
Quote:
Originally Posted by JoeWras View Post
...

I'll never forget the most cold-hearted thing I ever heard from a medical professional when we took him out of the care of the hospital resident. He said: "I am a doctor of the living, not death." He implied we were taking him to hospice for a euthanasia.

Sure doc. Let's keep him living a few more months in your hell hole hooked up to a lasix drip. Right...

Hospice was of our choosing and not the hospital's. They were wonderful.
When we were in the process of arranging hospice care for my FIL, it seemed that all the many doctors made sure they got in another chargeable visit. I recall the "kidney doctor" stopping in and telling us about how well his kidneys were doing at that stage. We were all thinking, "what difference does it make, he is dying, don't you have better things to do?". It sure seemed like a money grab to us.

-ERD50
ERD50 is offline   Reply With Quote
Old 05-11-2018, 09:03 AM   #13
Thinks s/he gets paid by the post
JoeWras's Avatar
 
Join Date: Sep 2012
Posts: 4,873
Quote:
Originally Posted by ERD50 View Post
It sure seemed like a money grab to us.

-ERD50
+1
JoeWras is offline   Reply With Quote
Old 05-11-2018, 09:24 AM   #14
Give me a museum and I'll fill it. (Picasso)
Give me a forum ...
HFWR's Avatar
 
Join Date: May 2005
Location: Lawn chair in Texas
Posts: 13,974
Quote:
Originally Posted by JoeWras View Post
I'll never forget the most cold-hearted thing I ever heard from a medical professional when we took him out of the care of the hospital resident. He said: "I am a doctor of the living, not death." He implied we were taking him to hospice for a euthanasia.

At that point Iíd have shoved his stethoscope up his ...
__________________
Have Funds, Will Retire

...not doing anything of true substance...
HFWR is online now   Reply With Quote
Old 05-11-2018, 09:54 AM   #15
Give me a museum and I'll fill it. (Picasso)
Give me a forum ...
 
Join Date: Jun 2005
Posts: 9,798
My mom died of congestive heart failure in her sleep at home. She had been in and out of hospital a couple of times and knew the end was near. She was sharp as a tack to the end, too, and had already gotten rid of all her junk and distributed to her kids any items that were wanted by them.

There was nothing anybody could do except try to make her comfortable the last couple of months of her life.
LOL! is offline   Reply With Quote
Old 05-11-2018, 10:05 AM   #16
Give me a museum and I'll fill it. (Picasso)
Give me a forum ...
Moemg's Avatar
 
Join Date: Jan 2007
Location: Sarasota,fl.
Posts: 11,112
So sorry for your troubles . We can never predict when our parent swill die especially when they are on a slow decline . My Mom was just like your Mom 's situation .She would have good days and bad days . Eventually a severe pain landed her in the hospital and she passed away a week later . We did have palliative care and then hospice for six months before she died . They were great. Two weeks before my Mom died she went to a St. Paddy's day party so you can never predict when someone will die .
Moemg is offline   Reply With Quote
Old 05-11-2018, 11:13 AM   #17
Moderator Emeritus
W2R's Avatar
 
Join Date: Jan 2007
Location: New Orleans
Posts: 42,812
Katsmeow, I am truly sorry to read that you are going through this. TBH I do not know what advantages or disadvantages would ensue from putting her in hospice or not at such an advanced age. Others will have more to say about that.

Right now, IMO, it is very important to spend time with your mother, say everything to her you need to say, and appreciate these last few months or years that she may have left. This is probably more important than getting an accurate prediction of when she will pass away.

My suggestion is to make sure that when she is gone, you will not be thinking, "oh, I wish I had told her (…)", or "oh, I should have asked her about (…)" or "did she really understand that I forgave her for (…) and love her so much", or whatever. Or at least not as much.

Also, spending a lot of time with her will help you to know if she is comfortable, happy, and at peace at this time in her life. That may help to guide you in decisions concerning her care.
__________________
I have drunken deep of joy,
And I will taste no other wine tonight.

― Percy Bysshe Shelley
W2R is offline   Reply With Quote
Old 05-11-2018, 11:18 AM   #18
Moderator
MBAustin's Avatar
 
Join Date: Jul 2010
Posts: 5,530
Quote:
Originally Posted by Bestwifeever View Post
Since you seem to have a good relationship and respect your mother's regular doctor, I would call her and tell her your concerns and what has been going on medically with your mother and ask if she thinks her prognosis of two months ago (? can't tell where on your timeline you were told this: "She eventually more or less said that she expected my mom to live 6 months to a year although it could be less if she got an infection or something else occurred. And, it could potentially be more if she improved.") is still valid. She might advise you about hospice and palliative care vs other treatment.
I think this is a good next step. I would also ask her for recommendations for a palliative care or hospice evaluation.

It's also important to have a conversation with your mother (ideally with a trusted medical professional present) about what she wants. Are there events coming up that she wants to be around for (a wedding or graduation, etc.)? Are there things she still wants to accomplish (even if it's finishing a knitting project)? Or is she interested in spending the time she has left comfortable and at home with you?

If you haven't read it, get Being Mortal by Atul Gawande - it is not a difficult read and addresses these issues very well.

I was fortunate that when my mother developed breathing problems after having been in a nursing home for a couple of months, she made it very clear what her wishes were. When her doctor asked "Should we take you to the hospital to check this out?" she sat up in bed and said firmly "Hell, no!". So we called hospice and she died comfortably 3 days later.

Blessings on you and your family in this difficult time.
__________________
"One of the funny things about the stock market is that every time one person buys, another sells, and both think they are astute." William Feather
----------------------------------
ER'd Oct. 2010 at 53. Life is good.
MBAustin is offline   Reply With Quote
Old 05-11-2018, 12:21 PM   #19
Thinks s/he gets paid by the post
ExFlyBoy5's Avatar
 
Join Date: May 2013
Location: Country Living
Posts: 3,528
I can certainly sympathize with you. My Mom died in 2013 after being enrolled in "at home" hospice (dementia and COPD) and now my Dad (at the age of 90) I am afraid is getting close to needing the same care (also has COPD).

I would definitely consider getting a hospice provider involved, as they can do an evaluation in a relatively short order...and if she doesn't quite meet the Medicare requirements today, when she does get to that point, it will much easier to get her enrolled and get the benefit that will help her AND YOU. This was the case with my Mom...when initially referred, she didn't quite qualify, but they were able to help out in the palliative sense. Within a couple of months, she did qualify and at that point, it was all "turn key".

Just this AM, I had to go over to my Dad's (he's about 10 minutes away and lives by himself..and yes, he refuses to move in with us) when he hadn't gotten up at his normal time and wasn't answering the phone. He was indeed still sound asleep in his bed (the latest he's been in bed in 50+ years as far was we could tell) but was OK. Needless to say, it was a stressful morning.

I also feel your pain dealing with the MD's. Dad has a pulmonolgist, a cardiologist and a GP...and he has been chasing his tail for months. It's aggravating as hell, especially with conflicting (and often WRONG) information.

Quote:
Originally Posted by MBAustin View Post

If you haven't read it, get Being Mortal by Atul Gawande - it is not a difficult read and addresses these issues very well.
He also did a PBS Frontline show on this book. It's somewhat depressing, but does an EXCELLENT job of showing how physicians are terrible at dealing with end-of-life situations.

https://www.pbs.org/wgbh/frontline/film/being-mortal/
__________________
Retired in 2014 at the Ripe Age of 40
ExFlyBoy5 is offline   Reply With Quote
Old 05-11-2018, 01:48 PM   #20
Moderator Emeritus
braumeister's Avatar
 
Join Date: Feb 2010
Location: Flyover country
Posts: 13,588
Quote:
Originally Posted by ExFlyBoy5 View Post
It's somewhat depressing, but does an EXCELLENT job of showing how physicians are terrible at dealing with end-of-life situations.
Lots of horror stories out there, which make you appreciate the good ones all the more.

When my mom was at the end, her memory care unit sent her to the ER when she was found unresponsive. They called me at the same time, and I got to the ER about 30 minutes after she did. I feared the worst when I talked with the attending ER physician.

He put his hand on my shoulder and said "I've already checked her chart and I saw that she has a DNR order. Unless you want us to, we won't do anything but keep her comfortable and pain free. Does that make sense to you?"

I could have hugged the guy. Mom died peacefully two days later. The hospital wasn't especially crowded, so they gave her a private room so I could visit, and the morphine she needed. The nurses were really great.
__________________

__________________
I thought growing old would take longer.
braumeister is offline   Reply With Quote
Reply


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Congestive Heart Failure Zoomie Health and Early Retirement 9 03-19-2011 11:04 AM

» Quick Links

 
All times are GMT -6. The time now is 11:10 PM.
 
Powered by vBulletin® Version 3.8.8 Beta 1
Copyright ©2000 - 2019, vBulletin Solutions, Inc.
×