Is my mom too far gone to see a specialist for her COPD?
This is an awkward question and there is so much complexity around my mom's care right now that I do not even know how to ask but am seeking thoughts from this forum from those who may have experienced similar.
My mom is 87 years old and in memory care for one year. She has had COPD for 15 years and was recently diagnosed with early-stage heart failure.
It is a long story for another time, but my sister has sole POA. Without POA, nobody ever talks to me about mom's status, and my sister and I have been estranged for years which leaves me in the dark about a lot.
I began noticing behaviors of my mom's that made me think without a doubt mom is in her final weeks to months. She has been double incontinent for one year. She has no appetite and always wants to sleep. I visit her during mealtimes, and the last few days she keeps saying she is "not hungry". One of her friends who is still quite sharp told me my mom has not eaten in three days. I believe her. Mom looks pale and frail and has obviously lost weight. I have put food on a fork and she refuses it, but she can still feed herself. Yesterday she took a few bites for me.
Mom always knows me and will ask about my husband, job, and friends she knows. She knows the year, the month we are in, and knows her surroundings. She is a social butterfly, but in recent weeks is withdrawn and shows no interest in anything. She is in a wheelchair and can shuffle her feet to move around but getting her from the chair to a bed takes effort and she moans and groans.
My sister recently texted me that staff at the ALF raised the topic of hospice for mom. My sister arranged a meeting with her, me and a social worker at the ALF. We decided to have a meeting with a hospice nurse next week. During the meeting with the social worker, it was discussed how the staff is calling ER repeatedly each time mom's COPD flares and needs acute care. We want to stop that cycle since repeated hospital visits are not good for her. It was discussed however that the hospital discharge papers from visits months ago contained instructions for mom to see a pulmonologist and that oral meds were suggested (beyond the inhaler) and the family is the one who arranges it.
My sister, as POA, said she has gotten those papers but just always gave them to the ALF to follow up. We discussed this was a gap in mom's care. I felt like my sister was clearly outed for having dropped the ball several months ago. However, I kept silent on my thoughts about her.
Since the discussion is now about hospice, I feel like mom missed a step. There was an opportunity to be able to better manage the COPD. Now mom is at a point now where it will be like moving a mountain to get her to a doctor's appointment. I am left wondering is it worth pursuing? Has she advanced so far in other areas that different treatment for her COPD will not have much of an impact?
I asked staff what stage of COPD and Dementia mom is in, and the person there could not tell me. I do not think staff ever evaluated her. I have so little information on which to feel confident about having hospice take over. My sister takes no ownership and just says if I want to find a specialist, I can. All I have is a gut feeling mom is near the end and I wish to have a level of peace about it is handled. Any thoughts are welcome.
Thank you.
10 Answers
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Hospice is end of life care. It can last days, or years. If mom has episodes with her COPD, all she will get is oxygen 'boost'. No new meds.
That was my experience with both MIL and FIL.
The staff already put mom on oxygen. That just happened about two weeks ago. It seems to me she is already in an unofficial hospice situation - except for now the facility will call ER if her symptoms spike.
Upon learning of the gap in her care where it was recommended she see a specialist, but nobody followed up, it just left me feeling like I wanted to scramble to find that specialist and obtain whatever care they would prescribe. However, when I look at my mother all I see is someone so far down a road that it makes me wonder if would even matter.
I am certain that once hospice is called in, she will be gone very quickly.
I am not sure this is a question anyone can answer. I just feel like an opportunity was lost and I really hate it.
Thanks again.
GingerMay, I don’t agree. Hospice doesn’t cause decline. A sick body and/or mind causes decline.
My mother, who had dementia and other issues, was on and off hospice care for 2.5 years. My husband, also with dementia and other issues, has been in hospice care for over a year.
No one can accurately predict what the human body will do!
I really think you should get hospice involved because your mother will get the medications she will need to help with pain and anxiety. There is a lot of anxiety and anxiousness because of lack of oxygen. My mother in law smoked most of her life and died from COPD. She was diagnosed with it about four years before she died. She used Ativan a lot during the last year because she suffered from oxygen deprivation. My mother in law was on hospice for well over a year, they kept her on because the problem with chronic diseases like COPD is there is no direct timeline to predict when death will occur and it is difficult for hospice to make that sort of assessment.
Assisted living might not be where your mother should be now. It might be time for.a nursing home. Also your mother is 87 years old, so you need to prepare yourself that she is at the end of her life.
I wish you peace as you navigate this difficult time. It is hard enough to watch your mother decline but to be dealing with an estranged sister makes it so much worse.
If this is Memory care within a Longterm facility, you maybe able to use the facility doctor. You can request that a specialist be brought in but in the long run, it maybe up to the POA to make an appt to see a specialist.
I would say that Mom has congestive heart failure. It goes hand in hand with COPD.
"COPD (Chronic Obstructive Pulmonary Disease) and congestive heart failure (CHF) frequently go together because they share common risk factors—like smoking and age—and can exacerbate one another. While distinct, they often coexist, with COPD-induced low oxygen levels straining the heart, while heart failure causes fluid buildup in the lungs."
She saw a pulmonologist and got an inhaler, a couple of prescriptions, then ambulatory oxygen. She was not a candidate for a lung transplant due to age and other health problems. As her COPD progressed, she went to the ER at least 3 times and each time, they intubated her with sedation. Each time, it was a very long, painful recovery. Two of the three times involved “hospital psychosis” compete with paranoid hallucinations and screaming rages accusing family as well as staff of stealing from her and attempting to kill her.
After the third time, her daughter convinced her to accept in home hospice care. She was on oxygen and hired a live in nurse. She got morphine and anti anxiety meds as others have discussed. She died very peacefully, having seen all close family members in her last hours.
IMHO, if anything, I only wish she had agreed to hospice sooner. The more aggressive interventions (intubations) she had before that to try to extend her life only caused her pain and suffering. Whereas hospice provided her a peaceful exit.
best wishes