My mother in law has advanced dementia. Up until a week ago she was fairly mobile (starting to be really slow) feeding herself (that was getting slower too and a lot more spills) and using the bathroom generally unassisted (just starting to have come incontinence issues with urine) She can speak still but rarely makes sense and often repeats same word over and over) So can’t really communicate her needs or pain and with in the last month or so has become more agitated and aggressive in general. She lives in her own home with 24/7 care but luckily my husband and I are only 5 minutes away so we can pop in as often as possible and come over quickly if assistance is needed. Last week we received a call from her caregiver that she couldn’t get my mother in law off the couch. My husband and I come over and are able to assist her and get her up and to bed. The next day I receive another call and this time they are unable to get her out of bed. I come over and I can’t get her up either, I can tell there’s something going on she’s in pain this time. Called 911 and long story short ended up in the hospital for 4 days with Diverticulitis. While in the hospital PT comes by daily for physical therapy and only once can we get her out of bed for a couple of steps. She’s now been fully incontient (both urine and poo) and is agitated when you have to change her and will yell and try to slap. She can’t barely feed herself and is eating very little even with assistance. She is also refusing to even try the PT. She was already on Ativan as needed prior to this and the hospital doctor now has also started her on Seraquel. We had to move her over to a skilled nursing facility but even here she is refusing to try to walk and giving issues while changing and starting to try and refuse her medications too now. We are at a loss, I know that generally with every medical issue or environment change that you can see set backs or a faster progression of the disease. But a week ago she was doing all these things and it’s like a flip was switched and she’s just done. And she’s a strong willed person and if she doesn’t want to do what you want her to do she’s not going to it. Has anyone seen such a quick change in demeanor and abilities like this? It’s not like she’s had a stroke or something to explain it, they think she has the strength to walk still but just doesn’t want to. Any feed back or tips or anything would be so appreciated.
You mention advanced dementia and previously she was doing well for someone at this stage. There really is no way of predicting how the final atages will go and you said she just seems as though "she is done" Can you accept this as the real situation and prepare your self and familly for her transmission to the next world. Waiting a this time is never easy but continue to connect with her even if she becomes unconscious as it will bring her comfort on some level. Hugs to you as you proceed on this difficult journey.
What seems likeliest is that there has been a long gradual build up to some kind of major event - gut, brain, heart, a combination. I should ask her doctors if they have any explanation to offer; plus give her a little longer in the NH to recover from the crisis and adjust to the changes in her environment and medication.
I don't think it'd be unreasonable to hope for some further recovery but I'm not sure I'd go so far as to expect it.
I'm sorry for what must have been a shock for all of you. We spend years knowing these things will happen one day, but when they do we still somehow weren't expecting it.
Yes, it happened a year ago to my Mother. She went from being mostly independent to being unable to do anything for herself. When Dad died in Dec 2007, Mom and I became “roommates” because Mom’s eyesight was poor due to macular degeneration and because I am single and have some health problems. Mom was able to take care of herself and used a 4-legged cane in the house and a wheeled walker when in public places such as church or the store. We paid the bills together. Mom cooked (former Home Economics teacher for 29 years), I did laundry and we both cleaned.
Mom took it really hard when her 83 year old brother died in March 2017 and her 91 year old sister died on Easter Sunday, April 17, 2017. Her brother didn’t have a funeral and we were unable to attend her sister‘s funeral as we were in a different state attending the wedding of Mom’s only grandson (my brother’s son) on April 22, 2107. Mom started complaining of back pain after hearing about her sister's death but she felt well enough to go to the wedding.
On Sunday, April 23, 2017, thirty minutes after we got home from the wedding, Mom stated that she needed to go to the Emergency Room. Within 36 hours, Mom could not/would not: talk, feed herself, nor walk and was sometimes incontinent of bowel and bladder. Mom stayed 2 weeks in the hospital while tests were done and then she transferred the local LTC facility for rehabilitation—physical therapy (PT), occupational therapy (OT) and speech therapy (SpT).
Mom is now at the LTC Memory Care Unit because she needs assistance with her ADLs: eating, getting dressed, toileting, etc. & uses a wheelchair; and because she thinks that I live in _______________ (fill in the blank) such as Hawaii, Florida, California,...; thinks that my brother lives in the house & teaches school (he lives in another state & is not a teacher) and that we gambled away all of her money and sold our two farms. Mom was SOOOO upset with all of the gambling and stealing that my brother and I were supposedly doing that she was able to convince the LTC’s Social Service Department to assist her in changing her POA. I hired a lawyer and petitioned for guardianship and conservatorship of Mom. After 5 months, the attorney appointed by the court decided that Mom was just mad at me and my brother and that the situation was “a family matter” and “not a matter for the courts” so the change of POA that Mom had signed in August 2017 was revoked and I am once again her POA. There is much more to this story but I will post that later as a different forum question.
My Mom’s health deterioration has been contributed to “Severe Depression with Delusions” and “Beginning Dementia” related to the “sudden & unexpected” death of her brother and sister; and because the other grandmother (my brother’s wife’s mother) died a month after the wedding of Mom’s only granddaughter (my brother’s daughter) in January 2016 so Mom “expected” that she would die after her grandson’s wedding.
I agree with “Countrymouse”, “Veronica91”, and “rocketjcat” that there has been either a long gradual build up to some kind of major event or that a catastrophic event has occurred that has not be discovered by the doctors. I think that you need to have the doctors look at both physical and emotional/psychological possible causes for your Mom’s sudden changes. Maybe the diverticulitis had not resolved, maybe your Mom has some secondary infections such urinary tract infection, kidney infection, peritonitis or mild pneumonia. Maybe she DID have a stroke or TIA, or a mini-heart attack. Also, ask to have a geriatric psychiatric evaluation done. There is a reason; you just haven’t discovered it yet.
I will be praying that you find the inner strength that comes from God during this difficult time. “I am your God. I will strengthen you and help you.” Isaiah 41:10 NIV
Since you and the doctors have ruled out physical causes for your mom's behavior, maybe it is time to have a geriatric psychiatric evaluation done?
Keep us posted on how your mom is doing.