What to feel?
I am angry and upset....
Some background... Mom is 94. Even 2 years ago, she was a young 92. She is getting weaker, but she is not bedridden. She has declined over the past 8 months, probably due to small vessel ischemic disease and low blood pressure (that was not treated until 2 months ago when her HCTZ was stopped). So, the damage is done. She is receiving palliative care from an in-home hospice program. (She is not yet on her death bed.) Hospice has her terminal condition as "aphasia". As far as they are concerned, that comes under an umbrella of dementia, Alzheimer's, and other cognitive issues. I am not looking for a cure or treatment, but really wanted a more specific diagnosis. It appears to me that she might have vascular dementia (from the SVD) without major memory issues. That may give us a better picture of what we are dealing with and what we can expect, and if there was a genetic component to consider (i.e., dementia). Hospice coordinates with Mom's GP. So, I called him and explained that I was not looking for a treatment, and wanted to see what stage we were in the disease progression. Basically, what he said was he was a generalist and he could not help with specific diagnoses. He then said that at her age, he would not even treat a UTI. He would just let her go. That was really hard to hear and I am trying to deal with the emotions..
18 Answers
Popular Questions
Related Questions
- Need checklist for questions to ask doctor for recent decline. Any suggestions?
- What happens when they say your parent needs palliative care?
- Hospice question, what specifically does it mean to "call in" hospice?
- My mother has fought dementia for over ten years and now has gangrene, she can't have amputation or surgery. Any advice?
countrymouse, thank you. It would be good to find a doctor who will treat a patient for an infection, no matter what the chronological age.
But the malaise of a u.t.i. is not inevitable. Should your mother develop one, it should be identified and treated with antibiotics. It's not like it's a nice way to go or anything.
What the GP may have had in mind is the much greyer area of low grade grumbling u.t.i.s that are present in huge numbers of very elderly people, especially women. There are many, many learned papers debating which it's worth treating and which it is futile to treat, and the debate has been trundling along undecided for years. There is quite a lot of evidence that most of the antibiotics ladled down women for this purpose were/are a waste of time, money and efficacy.
But you don't care about epidemiology, you care about your mother. And if she is manifestly ill, you insist she is treated: palliative care does not exclude antibiotics for an acute infection. You are entitled to argue.
Meanwhile... Know any friendly geriatricians? Or, come to that, PCPs/GPs with a special interest in older people's health? It's not too late to vote with your feet.
Aphasia is associated with damage to the brain, often from a stroke or blow to the head or a tumor. Perhaps that is why for some purposes it is grouped in with dementia -- they are both about damage to the brain.
It is extremely difficult, sometimes impossible, to accurately diagnose dementia or other brain damage in a living patient. If Mom went through a lot more testing now you'd have a "possible" or "probable" diagnosis. If an autopsy is performed you'd have an exact and accurate diagnosis. The medical professionals think Mom is near the end of her life, and they don't see a benefit to a more exact (but still not accurate) diagnosis. It won't change her treatment. If you want an exact diagnosis for the sake of evaluating health risks to the rest of the family, you can order an autopsy when the time comes.
For a good discussion on the inadequacies of the medical profession in dealing with end of life, read "Being Mortal" by Atul Gawande.
What should you feel? Oh my goodness! There is no "should" here. Anger, outrage, disbelief, and fear would probably be my feelings. And then maybe eventually acceptance. Or maybe not.
I'm so very sorry that you and your sibs are dealing with this now.
Joann29, if a family member has dementia, others in the family are at risk. I just read two very good books on the subject. I don't like diagnoses that make no logical sense (ie., aphasia from a "possible" stroke). But, that is what it is, and there is nothing I can do about it. I can't take Mom to a neurologist because they would require an MRI, which they would not order. That would come from the GP. I am not sure Mom would go for that anyway. But, I can live with that. It was the part about not treating something that is treatable just because of her age.
Feel as you do, angry and upset. Use that anger to find out the best treatment for your Mom. You do not have to accept this doctor's take on it. She is not bedridden. She is not on her deathbed.
Try a urinary tract specialist. Urologist.
Maybe then, you will feel reassured overall, that you did the best you could for your Mom.
Even in the last week of my mom's life, she was up and down. One day she seemed fine and the next day she'd be semi-comatose. It was crazymaking for me, trying to figure out where she was in her progression. I brought in hospice when she seemed to be really failing. I also stopped her meds. The hospice people couldn't tell me where she was in her progression to passing until her last day, when the nurse predicted she'd pass. She passed on the day the nurse predicted. I would only have treated her for comfort care, nothing that would have prolonged her life since she was ready to go and her quality of life was pretty much gone. My cousin, who is a nurse, has long said that pneumonia is the friend of the elderly, as that will often hasten their demise if left untreated. It may seem harsh, but as long as your mom is kept comfortable, I think it's the kinder way to deal with a failing body.
It feels so difficult to be a bystander watching your loved one fail bit by bit. But we don't really have any choice and we can't predict how long it will take. {{{Hugs}}}
As far as not treating a U T I, I don't really get that. My Mom had continuous U T I's as she got older. Penicillin does take away the bodies good bacteria and so perhaps that is why they don't want to prescribe it. I hate it when Doctors don't explain their diagnoses etc.. I know it's frustrating. Hang in there.
As for not treating a UTI, that’s incomprehensible to me. Even if someone is approaching death, they shouldn’t have to pass away with discomfort like that.
If Mom has not seen a neurologist, she needs to, even if only to set your mind at ease. If she’s seen one and you are not satisfied with the answers you got, find another. You owe it to yourself to be content with her diagnoses and prognosis so you can put these issues aside and devote time to your mom.
I don't think there are any accurate timelines out there; I used to look, somewhat crazed. How long can this go on? I wasn't caring for mom at home, just visiting her at her NH almost 2 hours away and dealing with medical stuff on the phone. It was slow torture watching my mom decline.
After a pretty disastrous hospital stay, we moved to "palliative care"; to us, that meant "treat what you can here in theNH and don't send her to the ER unless we give permission. They treated at least one round of pneumonia and at least 2 UTI's "in house".
Finally, she fell, broke her wrist and ended up needing to be transported to the ER; that did her in, I think. She returned to the NH in pain, bedbound and unwilling to get out of bed. We called in hospice and she went out peacefully about a week after the fall.
We are with you on this journey.
You can read about stages, but, if it's Vascular dementia, it might not fit into the symptoms that are described for Alzheimers. Although, to me, they do seem to go pretty close to each other. I suspect that my LO has mixed, or Vascular and AD.