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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

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.
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Reply to Travelinfool
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CaughtBetwixt Aug 31, 2022
Thank you! This is really helpful! Based on the scale, she's between 70% and 80%, so that helps a lot in evaluating where she is. First iron infusion appointment is tomorrow morning, so hopefully, she has a good result with this, and she has more energy and feels stronger when she's done. The last infusions lasted a couple of years, so that would be good. She also is FINALLY addressing her sugar intake.... :) She's not diabetic, but candida loves sugar, and that can make you tired and not very energetic, too.
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CaughtBetwixt: Perhaps your mother would do well in a managed care facility. Hopefully her low iron will be remedied via the infusion.
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Reply to Llamalover47
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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.
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Reply to MACinCT
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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.
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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?
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Reply to Fawnby
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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.
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Reply to Evamar
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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?
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Reply to ConnieCaretaker
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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.
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Reply to NancyIS
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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.
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Reply to msl50birm
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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.
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Reply to BarbBrooklyn
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CaughtBetwixt Aug 23, 2022
Thank you, Barb - we haven't talked about it because she has always said (even most recently when she visited a friend who was in a really nice AL/NH) that she doesn't want to go there. She does not like not having control, and when they shut down all of the NHs for COVID, that really upset her.

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...
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"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.
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CaughtBetwixt Aug 22, 2022
Thank you so much! I appreciate the insight and the information. My mom was never much of a "joiner," and she saw other people in AL/NHs where they were not happy. She doesn't have the money to go into a nice one, so the Medicaid version would be about all she could afford, which is the other reason she's living with me (long story - dad had Parkinson's & she was his primary caregiver for most of his life). I'm hoping that the infusion appointments will give us some time to talk about things - she had to have this done a couple of years ago, and it was three appointments. One of my brothers was here visiting at that time, so he was able to go with her to one appointment, but she did the others herself. I don't know how she will feel when it's time for the appointments - we're still waiting for scheduling - but I'm hoping that the first one will make enough of a difference that she will feel more optimistic. It could be that she's so discouraged because she doesn't have any energy or ability to do anything - if that's the case, her attitude will keep her going until she finds out whether the infusions will help. Thank you again!
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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.
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Reply to Midkid58
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CaughtBetwixt Aug 22, 2022
Thank you for sharing your experiences! I hope that you and your family are holding up OK.
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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.
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Reply to AlvaDeer
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CaughtBetwixt Aug 22, 2022
Thank you! That's been the biggest challenge for both of us, and I appreciate the insight. When we left church yesterday because she was SOB, I pointed out to her that if she fell out and she was at church or elsewhere, they would call EMS, and she seemed to register that that might not be what she would want. At the same time, I absolutely agree that the infusion might fix a lot. I hope it does - she has had a lot of interests, but she has not had the energy to do as many of them as she would like. Thank you again for sharing your experience!
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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.
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Reply to JoAnn29
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CaughtBetwixt Aug 22, 2022
Thank you! I will see how she responds to the infusion and go from there.
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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.
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Reply to Fawnby
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CaughtBetwixt Aug 22, 2022
Thank you - I'm not sure how she would handle talking to anyone from hospice at this point, unless it were something that the doctor or a hospital arranged while she was being treated/seen for her ongoing issues. She's convinced that she's going to be around until the Rapture, but I have to plan as if she's wrong while behaving as if she's right.

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! :)
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