What to feel?

Asked by

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..

Answers 1 to 10 of 18
Ma, I wrote a long post and then lost it. Are you more upset about lack of a better diagnosis or her gp saying he wouldn't treat a UTI?
It's sad to lose a loved one, regardless of their age. I'm sorry about your mother. I know that it's taken me years to really digest how my LO, who now has severe, last stage dementia. But, she's only 65.

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.
Top Answer
Ma; my mom was diagnosed with Vascular Dementia; some of her doctors thought that she might have Alzheimers as well, but no way to tell until after death, and getting an autopsy.

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.
Does it really matter what kind of Dementia she has. I don't think it is genetic because there are so many factors cause it. Smoking, brain damage, some medications, heart desease. Alzheimer's is different. That is genetic. At this point, there is no cure for either. As my daughter, RN, says the body gets old so does the brain. Grandma is 94. She has lived a long time, longer than most. She maybe just declining. I would have been upset by what the doctor said. It was cold. Just be there for her. Hospice will keep her comfortable.
I am surprised that the medical professionals would group aphasia in with dementia. My husband has aphasia and his mind is sharper than mine 90% of the time. He has hearing loss that causes him not to understand what I say to him, but once he hears me, he almost always comprehends what I’m telling him.

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.
Oh, I thought of something else you might check out. It reminds me of what the doctor said about not treating a UTI. I've read multiple articles on how professionals (including doctors) discuss how with a person who is in late stage dementia and at a certain level of progression that that the body cannot recover. And that even if you treat infections with antibiotics, the infection will return. And, there are studies that show that treating with antibiotics does not prolong life. I'll see if I can find some links. If so, I'll PM them to you. I know it sounds harsh, but, what I learned is that after a certain point, treating infections may not be in the patients best interest. Of course, I'd honor any medical directive they have ordered, if any are in place.
I agree with the other responses you received. I think at a certain age, the body just starts to decline and treating certain things would probably do more harm than good. So many treatments and medications have their own side effects etc. and a body that is old and probably shutting down can't metabolize medicine like it once could.

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.
My mom had some kind of dementia that I never got formally diagnosed. There was nothing to do with her as far as treatment goes, she was always pleasant and had mainly memory issues and general cognitive decline. So I don't know that getting a diagnosis will give you the information you want. It sounds like you want to know how long your mom has. No one can tell you that, even with a specific diagnosis.

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}}}
What to feel?
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.
I don't have anything constructive or comforting to add to the discussion but I find I keep coming back to this thread because the questions your post brings up infuriates me. My mom was a lot like yours, she also declined suddenly in her early 90's and the only diagnosis I've got is what I've come up with myself by reading online, I'm pretty certain that the combination of TIAs, decades of heart problems and finally months of frighteningly low blood pressure due to incompetent health care providers failing to adjust her medication all point to Vascular Dementia. When the professionals who hold your mother's life in their hands show ignorance by listing aphasia as a terminal condition, and her doctor shows a lack of compassion for both you and her by making that ridiculous statement implying she is too old and worn out to even consider treating a simple UTI it just makes my blood boil. In my opinion you have every reason to feel as you do, the ones you are looking to for compassionate guidance have betrayed you by treating you like a statistic instead of a person.

Share your answer

Please enter your Answer

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support