Need advice--meds, good days, bad days, anticipatory grief

AlBel

Hi, this is long but I don't know that it can be abbreviated. My mom is 86 and has been having symptoms of dementia for the past couple years. I don't know which kind she has because she has not been formally diagnosed by a neurologist. I suspect it is lewy body. Anyway, it has gotten really bad last November after having had a hip fracture. She was in rehab for three weeks, healed well and was able to come home. She was doing fairly well at home until late January when she went to the hospital for a gallbladder infection. She went back to rehab, and was doing ok, but then got a bout of cellulitis and went downhill. The cellulitis has gotten better, but she has not been able to walk for weeks.

There will be 3 days when she is in a good mood, talkative, singing, (will say things that don't make sense, but can be redirected) then 3 days when she is mostly asleep, twitching, crying, panicking, can't speak or hold a spoon to feed herself. Last week was one of those weeks.

For about 3-4 days I thought she was dying. She was on Tramadol, oxycodone and a muscle relaxer because she would scream and grab her legs in pain (X-rays didn't show anything). I thought she was on too many drugs so I had the doctors take her off Tramadol and the muscle relaxer. The oxycodone was as needed. Then she seemed to make a marked improvement. She even participated in physical therapy one day. I knew that this would not be a long term improvement, but I was feeling somewhat hopeful. Then this weekend, it all went to hell again. For two days she has been mostly sleeping, interspersed with crying, writing in pain, mostly not communicative.

All I do is cry and cry. I don't want to lose my mom. I don't know how to handle this rollercoaster. The knowledge that it will be over when my mom is gone is too heavy to bear.

What should I do? Do you think that dementia meds might help her?

Symptoms: History of frequent falls, saying things that make no sense, depression, hallucinations (mostly having to do with seeing bugs on the walls and ceiling), confused about time of day. Can't walk, on a bad day can't feed herself, muscle spasms, days of sleeping all day, angry outbursts, sundowning, agitation, panic.

Still recognizes everyone, can follow a conversation, makes jokes, can talk about the past, can feed herself and can express when she needs to urinate or have a bowel movement.

M1

Hi and welcome. Ask for a hospice evaluation, she will qualify and they will be a lot of help. You don't need a doctors order, you can just call and request it yourself.

Anonymousjpl123

I would agree with @M1 - a hospice evaluation can help you see where she is, and what can be done to make her most comfortable. If there’s any way to make things better for her, or treatments that can help her, they will share that.

Also, call the Alz hotline at +800.272.3900 and ask to speak to a care specialist. You can walk through her specific symptoms, and they might be able to help guide you to resources.

I am so sorry you are experiencing this with your mom. It’s a very scary and disruptive disease. That said, there is help and support available to get through these times. Please look into hospice. Also, is there any support so you can get out and get a break, even for a few hours? This is also very important.

Im glad you found this site. Lots of good advice here. You are not alone.

gottlencoleman

Has your mom's doctor made any recommendations for prescribing anti-depressants or anti-psychotic medications? These drugs helped my mom a lot but I must warn that when starting these types of medications, things can get significantly worse before getting better. One evening things were so bad for my mom - it was like she was having a mental breakdown.... I did call the 24 hour Alz,org 24 hour hotline and did receive some useful help from an on call nurse. I have been told that it can take weeks for these drugs to have the effect that we would be looking for. Seeing a neurologist or even a PCP that specializes in dementia patients can make a big difference in the treatment protocol. I hope you are finding some resources.

Lynn24

https://alzconnected.org/discussion/68643/need-advice-meds-good-days-bad-days-anticipatory-grief

Please seek help. Your mother is eligible for hospice comfort care services of which takes place inside your home. I admitted my mother a few weeks ago, she has dementia. They will come out and assess your mother’s health and determine how many days of services she will need. It is all covered by Medicare or Medicaid.

Smilescountry

I would definitely ask for help. Your mother has many of the symptoms that my Dad has had. The neurologist diagnosed him with Alzheimer's, which was not what I was suspecting, but I think that it was an accurate diagnosis. Dad began crying in front of the doctor his first visit and told him about his sadness. The doctor put dad on something for memory, as well as an anti-depressant. Those two medicines working together did wonders. We had to take Dad off all strong pain medications because they caused various problems, many which you have mentioned. He only takes Tylenol, and for upset stomach he eats saltine crackers because the medications interfere with his other meds. Dad was on hospice for awhile, but then he got better enough that hospice discharged him. I love hospice, but sometimes the comfort meds are not appropriate for all dementia patients. I would definitely be working with a doctor familiar with this condition.