Mom has developed breathing problems & edema & is seeing the doctor tomorrow. I'm just worried. Can you share anything that may be helpful?

I am so sorry that your mom is struggling with this.

Have you considered hospice for her?

Since she doesn’t want her life prolonged and all of the children are in agreement, there aren’t any obstacles in your way.

Is hospice care offered at your mom’s facility?

Or do you need to start looking into finding one?

Can you make a phone call to her doctor or nurse, and perhaps the social worker to see which hospice organization is recommended?

Hospice is wonderful at keeping patients comfortable.

My father long struggled with congestive heart failure. It’s a slow but steady progression and a horrible condition. He was on increasing amounts of Lasix to pull off fluid and a number of times was hospitalized to pull off more fluid. One time in the hospital 16 pounds of fluid was removed. This was with IV Lasix which is an entirely different animal than oral Lasix. Lasix depletes potassium so there’s often another med to counteract that as potassium is important for heart function. Morphine can also be used to ease shortness of breath, it’s a low dose and quite effective. I’m glad your mom has her documents in order and you have sibling agreement. Ask mom’s doctor if hospice services are appropriate. I wish you all peace

I'm glad to hear that you are all on the same page regarding your moms care. That will certainly make things a whole lot easier for everyone.
Yes it does sound like it may be heart failure or even kidney disease. Her Dr. should be able to put her on Lasix, to help with the water retention, however just be aware that Lasix does lower a persons blood pressure. My husband was on Lasix the last 22 months of his life, and the hospice nurses and I had to keep a close eye on his blood pressure as it would fluctuate greatly, and we had to adjust his dosage accordingly.
Probably not a bad idea to get hospice involved at this point too. It will be an extra set of eyes on your mom and they will try to keep her as comfortable as possible. Just make sure you do your homework, as not all hospice agencies are created equal.
Wishing you and your mom the very best.

You seem to understand quite a bit already and know that this "may be" CHF. I think that is a good guess, as a nurse who worked cardiology. It may also be clear to you that she is exhibiting signs of both left AND right heart failure. The left failure, affecting ability of ventricles to pump, is the more "worrisome". While the edema can be seen and fretted over, it is overall less dangerous (and involves right heart failure). The left failure is of crucial importance and should be addressed with an ER visit, as it affects lungs and breathing.
If your Mother has never had heart failure in the past you may find she has a very quick and good reaction to the medications that can be given. These include diuretics which have a whole raft of side effects that come with them. Frequency and urgency of urination, the washing out of potassium and need for checks on blood work to replace K+ with medications, and etc.
There is no cure for CHF other than a heart transplant and that is not an option for your Mom. The doctor may suggest hospice and/or palliative care. She would continue in treatment for the CHF with medications for comfort, and to keep fluid being relieved out of the lungs and peripheral vascular system.
While you can't be CERTAIN until after her MD appointment, I think that your guess is a good one. I wish you luck, and your Mom. You cannot know how well and how thoroughly your Mom will react to medications, so this is one that must simply be dealt with. Hope you will update us after her appointment, and wishing you both good luck.

Thanks to everyone for their helpful comments and advice and sympathy. It helps.

Mom's BNP came back very high (2,303) which the doctor says is " consistent with acute onset heart failure" . She will be started on a diuretic which hopefully will make her more comfortable. We will be needing to talk to the doctor again now that the labs are back, but will probably be getting hospice involved as soon as appropriate. The doctor did want to do an echo-cardiogram just to see what was happening as that may impact what medications are used. So we will probably wait till after that at least.

One of the hardest things is that Mom is so confused by this all, and doesn't remember that her feet are swollen, or that she is having trouble breathing. In fact she will say she doesn't have problems breathing, when in fact she is panting and gurgling at times. She just does not complain and is very stoic.

While we are figuring out the best way to handle this and support Mom I wouldn't be surprised to get a phone call at any time. Sigh.

(((((Hugs)))))) Ch!!

My mother had the same thing set in after experiencing pleural effusion. Her legs were literally dripping like a faucet at one point.

Welcome to the world of Lasix. Your mom will now be on a diuretic for the rest of her life, and the bathroom will be her biggest challenge. If she isn't in diapers or Depends yet, start using them. There'll be so many accidents, because diuretics get rid of a TON of water very quickly, and trying to get to the bathroom in time is virtually impossible.

She needs to keep her legs elevated as much as possible, too. That'll make a huge difference. My mother has always refused to do that, so now they just have to put her to bed. She nevers refuses a nap, so this has worked well.

If it's any comfort, my mother has been this way for seven years. She's been on hospice care since January, but I'm not sure that CHF is going to kill her. She's a tough old bird and just keeps chugging along.

Mom is feeling awful this morning. Mom NEVER complains and is very stoic, but this morning she was in tears of discomfort and confusion. Diuretics will be starting today and hopefully that will make her feel better. Thankfully, Mom is already in Depends. My Mom will probably be like MJ1929's, not wanting to keep her legs elevated. But she does like her naps so the bed option is probably what will work the best for her.

Being sick, and with dementia, is an awful combination as she can't remember why she is feeling this way. And her type of dementia (NPH) also makes walking difficult, so getting to the bathroom is tough. She HATES having aides help her with things (although she is never mean about it), so this is going to hard for her.

My siblings and I (there are six of us) are all going to be spending lots of time with her over the next few days to help her. Hopefully once the diuretics kick in the AL staff can provide what she needs. I have a call in to the AL to see about the possibility of hiring a full time aid for the next week as Mom is too weak at this point to go to the bathroom by herself or get out of bed or her chair safely.

It may sound harsh to many of you, but my family is very matter-of-fact about death. Mom's quality of life with dementia isn't very good (she even mentions that on her health care directive), so I think most of us kids hope that her heart fails gently one night soon and that she just doesn't wake up in the morning. She has lived 89 good years, misses my Dad dreadfully (he died 5 years ago), and has a family who adores her.

I certainly hope that your mom finds relief from the diuretics. Diuretics can be helpful.

My dad had heart issues and later on a stroke. Both of my brothers have heart issues. It’s an ongoing challenge.

Your mom is very blessed to have a strong support system. It’s wonderful that all of you can be available for her.

My mom is the same as far as not wanting to impose on the staff. I wish that she could accept help without considering it an imposition on others.

Since my mom has been in bed her edema has ceased. She used to wear those stockings (which she hated) and they did help but were such a pain to put on and take off.

Being able to position a hospital bed in different ways helps too.

Will keep you in and your mom in my thoughts and prayers.

It seems as though the staff is addressing the issues.  I just wanted to mention another type of weeping from the skin:  lymphedema.  I've seen it in person (my aunt suffered from it).    It's very unsettling.

I've read that sometimes the lymph nodes can be compromised by cancer, and don't properly eliminate fluid from the body, and that can be a cause.

Chdottir, I hope that the diuretics quickly help your mother.

As of this morning Mom's legs are a bit better, but her breathing is worse. She is on a pretty low dose of Lasix and the original doctors orders don't allow it to increased for 48 hours (tomorrow). We have a call in to see if that can be changed.

She is also very restless so we asked about getting her something for anxiety. Tomorrow we will probably be taking her out of AL for the next few days so she can be in her favorite spot (my house, where she used to live). That will make it easier for all of her kids to see her. I think hospice will probably be involved soon. We have a Zoom call scheduled with her doctor scheduled on Monday.

It wasn't working trying to get Mom stabilized and comfortable so it was decided to take her to the hospital so they can get things under control there. She was so unhappy and uncomfortable that we felt it was the right thing to do. Due to Covid there are more limitations on visitors there, which is one of the reasons we didn't want to do it. Oh well, we and Mom are making the best of it.

There are sooooo many questions now: Will they be able to stabilize her, how much care will she need afterwards and will her AL be able to provide it. They are good, but not a nursing home. I believe that an AL could do it if Mom didn't have dementia, but she does and really couldn't cooperate with care.

Susan

Mom has been responding well to medication. At this point we don't feel she can safely stay in assisted living so we are looking for a good adult family home where she can get more attention.

Hospitalization has been tough on her as she is very confused about everything, and definitely starts sundowning in the afternoon/evening.

We are hoping we get lucky and can find a home for a direct discharge. Otherwise she will have to go to a nursing home (strange place, visitation extremely limited), or back to assisted living where we will have to piece together extra family support and hiring help until we find a good family home.