My mom (72 yrs. old, in AL, wheelchair bound, stage 6 probable Lewy Body Dementia) has been in a period of decline for the past few months. Her neurologist gave her 4-12 months in November, and little by little I've been trying to choose more palliative options for her where appropriate, until we formally go on hospice. I spoke with her geriatric psychiatrist on Friday, and considering mom's mood is well-controlled on her medications, we can discontinue regular 3-4 month appointments.
She has a mammogram scheduled for this Friday, and a Pacemaker check next Monday. These are the only 2 appointment types I usually hire a caregiver for since they are just routine, take a while, and involve no input from me. I figure the pacemaker check is important even though she sleeps next to that transmitter that sends data over the phone each night. But how necessary is a mammogram? She's been getting them every year and has never had breast cancer. She had a benign lump removed like 10 years ago. We have no cancer in the family.
When do you guys start easing up on these type of appointments?
Hi Annie, I'm still sort of new to this as I've had a crash course with my Mom and her vascular dementia in the past 4 months. My experience with my Mom is that every time we go in for a procedure there is a decline in her brain activity and her anxiety levels sky-rocket. She had spect brain scans-horrible experience for her, week later had a barium enema-the prep for that alone sent her over the edge. For me, there are just some things I will not put her thru anymore if its not needed or necessary. I would say Yes to the pacemaker but No on the mammogram, let her be comfortable in the time she has left. Just my thoughts on it, hope it helps.
I would think no on the mammo unless you would treat her if it showed an issue. If you wouldn't treat her for whatever it found, then why do the test? But I think the pacemaker would be a yes....you do want to be sure it's working properly.
Annie, ask yourself if it is going to make a difference in Mom's immediate care. We tend to think long term but for our loved ones with any dementia we have to think short term. You also have to ask yourself... what will you do if the test are positive?
My Mom survived breast cancer and was cancer free for over 10 years but I did not put her through the trauma of Mammograms the last few years.... along with pap smears. I had to ask myself, what would the benefit be to Mom and what would I do if I found out there was something? Would I put her through a biopsy etc? I decided it was not in Mom's best interest. I did the same when Dad's doctor suggested an Endoscope. He was comfortable but one of his blood test numbers were a little off. He was content another 2 years without the Endoscope I also opted not to have surgery on Mom's broken hand. It healed just as fast and the only difference was a little bump on the side of her hand which didn't bother her.
Remember that doctor suggest these test and procedures just as they would be a healthy, cognitively aware, thirty year old. Sadly, they do not tend to consider extenuating circumstances. They are trained to offer every aggressive treatment possible. At some point Palliative makes more sense. You know your Mom and you can make that call.
As for Hospice, please do not wait too long. I waited until the last couple of months with Dad and wish I had them on board so much sooner. It is a decision to give up aggressive medical treatment and focus on comfort care but it is not giving up. With Mom, Hospice was on board a year and a half before she passed away. Not only did it benefit Mom, but the support system put in place was my life line!
Yeah I was lying in bed last night thinking about it. There is no way in a million years I'd pursue treatment. It's true, nothing is intuitive here no matter how experienced I think I have become.
On the other hand, I'm at the doctor with my 3 year old right now, and I just got the call mom is in an ambulance with the flu. High fever and dehydration so far. She's never had the flu before. So as soon as I get done with the pediatrician I'm off to the ER. Ugh.
I would say drop the mammogram since she has no issue in this area now. Given late stage of dementia, any pain and confusion should be avoided. Do the pacemaker.
If you are now considering palliative care, don't worry about mammogram at all.
You know, you might want to consider not sending her to ER any longer. We quit with my sister's MIL because it just upset and confused her too much. The downside was just not worth it.
That's a good point, Titchou. I had already decided no more ER trips for falls and hits on the head, but then she went full-time in the wheelchair and that became moot. The AL made the call to the ambulance before they called me. I'm waiting in her room at the ER now. All I know is she was brought down for a chest X-ray.
Ugh this doesn't look good. She's coughing a bit and vomit comes up. She's well oriented to time, place, and person they said (that's the atypical part of her dementia, short term memory is pretty good too). She's really warm though, fever must still be up, and her heart rate has been elevated, so I guess she'll get that pacemaker check here. She's being admitted. He said they'll give her antibiotics too. I know her living will says no antibiotics, but she is verbally consenting as far as I can tell (she's a little hard to understand).
I've never dealt with this phase before. She's never been "sick" up until now. But her neurologist did tell me this in November...once they're wheelchair bound, infection sets in easily. I'm scared . She said to me "I'm suffering so much." I've NEVER heard her use that word before. But she said being out of AL and in the hospital feels like a vacation. I've been too scared to take her out in December .
Annie, hang in there. Know that our loved ones with this confusion in their heads do not want it to be there way. It is not what they wanted or what we wanted for them. This disease does not come with an instruction book. There are no right or wrong decisions. There is just you, doing the very best you can in the moment. Concentrate on her comfort.
AL is not like a nursing home in that they do not have continual nursing staff. They do tend to send residents to the ER for just about everything. I did ask that they notify me first so I could opt to take Mom to the doctor or an Urgent Care Clinic. Hospice was great as well. They just sent a nurse and/or doctor to check Mom out.
As for the living will, if Mom is still cognitive enough to make her own decision then it is her call. It is only after she is unable to make those decision that you step in. Just be sure that she has the cognitive abilities to make the necessary medical calls