My 80-y.o. mom lives with me. Her iron levels are really low, and she's been in to see the hematologist. They are supposed to schedule her for an iron infusion, d/t low iron, which she's had before. She was in hospital in 2020 for blood loss & had to have 5 units of blood (she ran that low...). Lately (probably b/c of the low iron), she's been sleeping more, having episodes of SOB, a little dizziness, and increase in asthma symptoms. We figured out that the air quality makes a difference - we were at church yesterday morning, & she got really SOB and we had to leave. Once we got in the car with the A/C on, her breathing got better, but she was still really tired.
I've heard that as people get closer to "their time," that they start to slow down - sleeping more, less appetite, less interest in what's going on around them, more retrospection, etc. How do you know, though, whether that's what's going on versus illness? She's DNR, so I know that she doesn't want "extraordinary measures," but I'm not sure how to determine if she's declining or just ill with something that can be treated?
I went with her to her last dr. appt, and the doctors don't seem to think there is anything really wrong, other than the low energy d/t to the low iron, plus her asthma and other medical conditions that she's had for decades. She's adamant that she does not want anymore transfusions, so we're waiting for the infusion to be scheduled.
Sorry for the long rambling, but I don't have anyone to talk to about any of this. Brothers are out of state; sister is out of the country. I have very limited medical experience, and mom is a retired R.N., so she always counters what I might observe, ask, or say like I'm an idiot.
I think the drs. think I'm looking for ways to get her into AL, but I'm not - I just don't know what's really going on with her. She puts on a good front with the drs. - last time she was in hospital, the nurses all took super good care of her and called her "lovey," and she actually seemed pretty happy there (2 years ago), but she definitely wanted to come home and she's done well for the most part. More wheelchair now than she used to want, but she understands that she can't do what she used to be able to do.
She also puts on a good front when the boys come to visit with their families/spouses. I love that they come to see her, and we're all hoping that the infusions help, but I don't know what to watch for in case it's something else.
Thank you for any insight you might have - I know there are a lot of folks here who have walked this road already, and bless you for sharing what you learned. <3
As long as she's happy and has the energy to do what she can do (and what she wants to do), she should be fine, and I'm not looking to offload her to AL/NH. At the same time, that fear of whether one morning she's not going to wake up or if I'm going to come home and find her gone weighs on me.
Thank you again for the suggestion! :)
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 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.
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:
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.
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.
My dad was in one for his rehab after his last fall/hospitalization, and we couldn't visit except through the window - when he died there, we hadn't been able to be in the same room with him after he left the hospital. She would hate that, particularly since she doesn't have the money to afford a nice place. She would be limited to wherever Medicaid would place her.
The house I bought for them to live in with me is affordable for me without any contribution from her, and she has all of her things around her - my furniture (except for what's in my bedroom) is in the basement. She has the whole house to herself, her truck is in the garage (just got the opener replaced so she could go/come without worrying about not being able to get in/out), and when she has energy, she does a lot more. The neighborhood is safe and clean, without too much traffic most of the time.
Plus, we have a cat who is great company for her - she wouldn't be able to have a cat in AL/NH. We also have a garden with vegetables/flowers that she likes to look at, and we have great neighbors.
I go to my office four days a week and work from home one day a week, so she has things to herself - she has had friends over when she felt better - and she likes the big kitchen. Laundry is all on the main floor, too.
I'm probably more sensitive to the whole "pushing her out" thing than I should be - I love having her with me, but her living with me puts a lot of responsibility on me to know more than I know about what to watch for. She takes care of her ADLs pretty well, and we have someone come in to clean once a month, which helps a lot.
With her lower energy, I've been doing more cooking - she's gluten free d/t ulcerative colitis/ankylosing spondylitis, so she has been trying to be careful about what she eats, but like all of us, sometimes, she just wants what she wants. :) When she loses interest in what we have for supper, I get a little more worried because she was a "foodie" before that was a thing...
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.
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.