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.

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.

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

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.