What is the difference between decline and illness?

Google Search: Palliative Performance Scale, also known as the PPS. Helps you to ballpark her progression down. A geriatric clinic will be a great help as well.

CaughtBetwixt: Perhaps your mother would do well in a managed care facility. Hopefully her low iron will be remedied via the infusion.

Low iron causes anemia because there is not enough hemoglobin to transport oxygen to the brain. Hence shortness of breath and exhaustion.
The AC does provide relief even to people with severe COPD. The wheezing can occur because the is breathing faster to try to get more oxygen in. She needs transfusions to get relief. She is refusing them so maybe she is just plain tired and asking for hospice. She is suffering greatly. Keep her calm.

I do not feel oxygen will work. I have seen attempts of using it with anemia. Every red blood cell can get uptake of oxygen through the lungs. It is just that her body cells are taking oxygen up well before those blood cells return through the lungs.

Has your doctor investigated why she is low in iron? A family member is in atrial fibrillation and also has history of gastrointestinal bleeds. The doctor was able to find cause if low iron in gi tract and address it. Your mom is only 80....someone should look for root cause of low iron.

OP mentions that mom can’t have a cat at assisted living, but that’s not necessarily true. Lots of ALs welcome pets, and it’s a joy for the residents who don’t have pets to interact with the dogs and cats of fellow residents. Some AL and memory care places have a resident dog. One care home dog near me even has his own Facebook page. Lots of dogs are trained to be therapy dogs and are frequent visitors to care homes. Also where I live there are many ALs and memory cares with gardens that the residents enjoy seeing and help maintain, and best of all, they’re waist high so there’s no stooping! My BIL lives in a private memory care home with 6 other residents. It’s a former regular family home in a residential neighborhood, and they have a swimming pool where residents can swim or gather. Places like these can be found all over the US now. It’s a trend. I wish people would understand that their LO has choices and that care facilities are much different from the way they used to be. Seems like so many folks want to believe they’re horrible. Why? Couldn’t they do some research and find out what’s available before they condemn what could be a wonderful place for their LO?

Caughtbitwix,
That fear will remain with you, but, it is something many of us are dealing with. Except we have to for our own sanity accept it and not to let overcome us, which means concentrating on your own life and distract, distance yourself.
I do have similar situation, different disease.
My husband with Parkinson’s and then fall, fractured hip, surgery rehab etc., sometimes able to walk sometimes not so much, uses walker. Not even 2 years, and although he had Parkinson I believe for about 10 years, but, except for taking meds, exercised 2 hours per day and was totally fine and healthy.
Two back surgeries this February, now, two weeks ago another surgery, for cancer, melanoma, apparently all removed, but all the symptoms get worse and all symptoms indicative of decline, shortness of breath, constant cough, swallowing problems, myoclonus, appetite decrease, not wanting to drink, sleeping a lot, sweating like never before, constant nausea. Yet, doctors and tests show all is fine.
Slow decline, slow recovery, or total decline?
I came to acceptance, all I can do is to find ways to alleviate some symptoms and try my best at maintaining normal life.

Suggest you make an appointment with a Geriatric Physician and Geriatric Psychiatrist. Was also wondering if she has seen a pulmonologist and if she might be a candidate for a portable oxygen tank?

If your mother is still of sound mind, let her lead the way with her own medical care. Make sure all of her paperwork is in order so that you can take over her care if she becomes unable to care for herself. She should set up powers of attorney for medical and financial matters, have a living will, which it sounds like she has, and a will if she has assets. Every mature adult should do this, not only your mother.

Get a better assessment medically. I too suffered anemia. It was an undiagnosed bleed that eventually evidenced itself as cancer. I am still in treatment for cancer and take 65 mcg of iron twice a day (with grapefruit juice to aid the absorption.) This has been going on for 3 years and my levels have returned to near normal, after surgery, chemo and immuno. It has been a journey. 80 is not old in today's world. Your Mom would be tired with anemia. I was and I am her junior. If you have a geriatric evaluation center associated with a hospital or medical institution schedule her for an evaluation pronto. As we age medications can affect our functioning and need to be adjusted. I took care of my Mom for the last decade of her life. I realized that she looked at a doctor visit as a social visit and did not report her medical issues accurately. Keep a journal so you have a reference to report to the doctor. I hope your Mom has routine medical appointments to monitor her situation. Since your Mom is a retired nurse, ask her what she makes of her situation. She obviously wants to be in the drivers seat so be her helpmate.

Betwixt, you mention AL twice; once in your profile (mom is thinking about it?) and once in your original post (Doctors may think I'm just trying to offload her to AL).

Do you, or you and mom have conflicted feelings about AL? It seems like it could be a great place for her where she could live her best life without you hovering, and where she would be among peers.

Having a parent in a facility does NOT mean you don't love them, despite what you may have heard.

"Offloading" mom into an ALF sounds like a punishment when in fact, it's often a great thing for an elder. She can be involved with peers her own age, enjoying activities, meals in a dining room 3x a day, outings designed for elders specifically like plays and operas, etc. I mean, my parents loved ALF life and felt like they were living the high life in a spacious apartment with caregivers a string-pull away at any given time.

Being low on iron means your mom is tired. Being tired does not mean she's dying or close to death, just that she's low on iron and exhausted as a result. If she feels better after the infusion, I'd say the problem is resolved. Asthma triggers are different for everyone; mine is humidity and illness, for the most part, with a few other things that bother me too.

My mother was 95 when she died of heart issues and advanced dementia both. She could STILL Showtime like a pro though, and schmooze you up like there was no tomorrow. Tell you how lovely you looked in your pretty blouse, not knowing who you were or where you came from, in spite of knowing you for a decade or more, meaning she had 'small talk' down to a science. She was cracking jokes with the male CG the night before she slipped into a coma she never woke up from. "Putting on a good front" is what these women do; it's the mask they put on for others to prove they're fine, even when they aren't. Even when they're dying, they won't let on they're dying b/c they're too busy proving they aren't. That's the definition of Showtiming. Your mom seems to be pretty good at it, like mine was. It keeps everyone off kilter, not knowing WHAT the heck is going on!!!

Being she's a retired nurse, you won't be able to pull any tricks on her! So you can't get a hospice evaluation on her w/o her knowing what you're up to. So be frank with her, like Alva suggested. Ask her what she wants her end of life plan to look like? Does she want hospice involved, when the time is right, for comfort care? Does she want to move into an ALF for the last year of her life or the last 10 years of her life, whatever is in store for her? She doesn't want any more transfusions, so if there is underlying disease at play here, like liver disease for instance, refusing transfusions can kill her. So asking her about hospice needs to be answered asap.

Here is a link to an article about the 12 Signs of Approaching End of Life:

https://www.verywellhealth.com/common-symptoms-at-the-end-of-life-1132515

For mom, I knew she was dying for the last year of her life; she was constantly short of breath; her appetite had decreased quite a lot (when food was her hobby); her incontinence increased as her dementia worsened; she was falling a lot more; her confusion ramped up dramatically; she was slumped over to the side in her wheelchair (indicating to me TIA strokes); she was having chest pains but her EKG was normal; drifting off to sleep and catnapping in her wheelchair more and more often (which was totally OUT of sorts for her); not able to use the phone or any gadgets at all any more, etc. The shortness of breath was continuous and dramatic, to the point where going to the toilet exhausted her. Those were the signs that I noticed; then she took to her bed one day and passed a week later, remaining semi-comatose the entire time.

Wishing you the best of luck with all you have on your plate.

My mom (92) always brags about her most recent checkup with the doc. Acc to him, she's in 'marvelous healthy' and all her 'numbers' are great.

I cannot look at her and think any part of that is true.

She is almost completely housebound, she leaves twice a week for 1 hr each. And that completely exhausts her. The rest of the time she is in her apt, either sitting at her kitchen table watching the neighborhood go by or in her den, watching TV or doing puzzles. She orders TONS of books and puzzles each month and they pile up to dangerous heights. Her place is hoarded out so that she can have ONE visitor at a time, and she keeps her apt at a miserable 85 degrees, year round.

She walks less than 200 steps a day. She's barely mobile--and one more good fall and she will be bed bound.

We don't expect any more of her, at 92 and with a lifetime of various illnesses and more surgeries than would seem 'normal' she has set herself up for a very dependent old age.

Her 'collapse' is slow, but steady. She recently had some kind of 'incident' she only told me about it--my assumption was she had a TIA, or several of them. She was mixed up and confused for a long time. (Still is, actually).

Luckily, she planned her EOL wishes 30 years ago, so we don't have that to think about.

Some people exit life quietly and smoothly. Some got out kicking and screaming. Some linger for ages and ages or, as my g-ma said "long past their sell-by date".

Asking your mom the 'hard questions' is not pleasant, but you need to know what she'd want. And once it's put in writing, then you don't have to talk about it again.

I practically forced my DH to do this with his mom. He got a little info, but not much. She just refused to think she would ever die. And I don't think she will. She's also 92 and mean, spiteful and filled with hate for everyone but her daughter and her family. She cannot stand me, and by extension, my 5 beautiful kids and 14 amazing grandkids. My kids have already all stated that they will NOT go to any kind of funeral if she ever passes. DH thinks they're awful for that, but why should they go 'honor' a woman who has told them their whole lives she wishes their father had never been born and that he married ME---someone she fervently hates. It's actually in her EOL wishes that I not be 'allowed' to go to her funeral.

Dh has no clue as to what she does want when she gets to that point in life. She's not doing him any favors, that's for sure.

I am 80 myself. I walk a good distance daily, garden, and live a fairly active and asymptomatic life. So I would say you are looking at "illness" and that the "decline" is due to illness.
Now we come to exactly what that illness is and how it should be treated. If you are POA and your Mom requires your input and assistance, that is one thing. If Mom is competent (and as you tell us, like me, she is a retired RN), then she may have made some conclusions about " being ready" to forgo further treatment. I would discuss this with her at length and in detail. Without the transfusions Mom will continue to decline. Her blood counts can be easily measured, but at some point collapse will happen.
The questions now are "if you do collapse due to needing a transfusion do you wish an ambulance to be called". Would you consider an interview with Hospice and have you discussed this with your MDs?
I understand being ready. While I am able to be healthy and happy I am glad to be here at this point. However, at 80 I have been there and done this and I am satisfied with it, have in fact enjoyed it quite a lot. However, I am also knowing that the next steps aren't pretty. I am ready to go, and would avoid and the last struggles if I were given a choice.
Speak with Mom about HER choices. Honor them. Assist her with making a POLST with her doctor to post in her home expressing her EXACT wishes. I surely do wish you good luck.

I would say, wait till the infusion and see how she responds to it. Low iron means tiredness. And her asthma could be caused by the heat and humidity. I knew a woman who went to Fla in the Winter the cold air effected her asthma.

You could ask hospice for an evaluation. They are experts on determining whether a patient is near end of life and ready for them to step in.