I’m a new caregiver and this is my first post (although I’ve been reading through the forum for several weeks and have to say it has been extremely helpful!).
Some background:
My mother is currently 75 and moved in with me 4 years ago when she was no longer able to work and therefore unable to support herself. (She had been a waitress her whole life, no retirement/savings and unable to live on Social Security alone.)
She has had COPD/emphysema for years along with depression. She also treats with pain management for lower back pain. They give her Lortabs and Gabapentin.
When she first moved in, she had issues with short-term memory loss (asking the same questions over and over) and wouldn’t drive (new city, not familiar with the area). Otherwise, she was self-sufficient. She was able to cook, do laundry, keep track of her medications, go shopping with the neighbor, take the dog out for walks, etc. She also liked to do embroidery and word search puzzles.
She saw a neuropsychologist in 2019 regarding her memory issues. He said she had mild cognitive impairment but could not diagnose dementia.
In mid-June of this year, her older sister passed away and since then things have gone downhill. First, she stopped walking the dog – said she was in too much pain but couldn't say where. Then she started saying odd things that didn’t make sense. Then having trouble walking, losing her balance. Sleeping more. Not being able to articulate her thoughts, find the right words. By mid-August, she was becoming more confused and extremely depressed, crying a lot, wanting to die, scared, saying she felt like she was in a nightmare. She wouldn’t get out of bed, didn’t care about anything. She would repeat the same stories over and over.
Since this started, her PCP has ruled out infections (including UTI), treated anemia, B6 deficiency, done a brain CT (normal) and continues to do bloodwork/urine tests almost weekly. They changed her antidepressant and started titrating her off the Gabapentin. She is no longer crying, etc. which is good. She is still somewhat confused throughout the day, but it gets extremely bad from about 9:00pm until 9:00am. She has no idea where she is or what she is doing. She gets up in the middle of the night to go to the bathroom but goes everywhere except the toilet (dining room chair, bedroom floor, laundry basket). (I now have a monitor to alert me when she gets up.) In addition, she hardly eats/drinks anything now and has lost 20lbs in a month. She only weighed 125lbs to begin with!
It has been 3 months and her PCP still can’t tell me what is wrong with her – whether it is dementia or pseudo-dementia caused by the pain meds and/or depression.
Home Health care sends a PT out 2x week to help her get moving (doesn’t help) and a nurse 1x week to take her vitals. A social worker came out who told me about different placements v. in-home care, but how do I make that decision without knowing what is wrong with her?
She can no longer stay by herself so I haven’t been to my office in over a month. Fortunately, I’m able to work from home right now but not indefinitely so that is another reason I’d like to know what I’m looking at so I can make plans.
I guess what I’m wondering is…is it normal for it to take so long to get answers? Do I need to push harder or go elsewhere for help? I’m at my wits end. I’m watching her waste away and I feel helpless and alone and don't know what to do.
Any insight, suggestions, information is much appreciated.
You can't continue to provide her the care and supervision she requires. Request Home Health or her PCP to send a Social Worker to help you plan for her. A social worker should be able to help you figure out how it can be financed as well. She is surely on Medicare at her age. Whatever they suggest will not likely be agreeable to her, (it may well be a nursing home) but will probably be best for the short term, at least.
Don't make her think it will be permanent... just a chance to get around-the-clock care while some better answers are explored. Physicians and other experts can continue to evaluate her. But you need a break. It MAY turn out to be a more long term solution, but you can cross that bridge when and IF you come to it.
Mom suffered from “broken heart syndrome” when dad died and had some of these problems.
My untrained instinct is that overmedication could be part of the problem. Read warnings for all the medications. My mom was prescribed medications that carried warnings to never take with other medications she was prescribed. Neither the pharmacy or her doctors picked up on this. Check dosages. Some medicines build up in your body over time. She should need lighter dosages because she is smaller.
Weight loss is considered a serious red flag. So is her complaint of pain. See if she can help identify where her pain is coming from. More imaging may help. Each order for imaging is very specifically localized.
in addition to getting her to doctors, look for “small” hidden problems/pain sources, like an ingrown toenail or toothache.
If you need to work and can not take care of your mom at home, it might be time to for her to move to assisted living facility while she is getting treated. If her condition improves, she can always move back in with you. If her condition deteriorates or stays the same, she will have competent care. Please look for a place that will accept Medicaid/Medicare since it appears your mom's finances will not be enough for private pay.
i had an mri which showed lowgrade leukoaraiosis ... white matter disease ... and may not show up on a ct scan ???
i call it “brain sparks” since it doesnt involve alzheimers tangles/placques.
but have enough of those and theres dementia and possible strokes and other undesirable future problems.
Please try to impress upon your mom this sentence, "I am doing the best I can with what I have for as long as I can; I will NOT give up." Have her say that many times until she can say it by herself.
And, find something your mom CAN do because now, all she sees are what she CAN'T do. For me, I can no longer do my art or crochet or sewing because of arthritis. So, I am on the computer nearly all day. Either I am talking to people all over the world with groups I began, or I'm watching streaming videos.
Are animals allowed in your living place? If so, she may like a puppy. For me, I can barely care for myself, so I can't take one in. But others in my over 55 year old building do have animals. Either dogs or cats. That might brighten her up. Good luck and please let us know how things turn out and what you decided. Thank you for asking.
It's hard but the less medication she can get by with the better.
Lother of meds, make you depressed and not wanting to do anything and many can make you suicidal.
I would have her start going out with you somewhere every day, even if it's just to sit outside to get some fresh air and sunshine.
Drive thru and take food to a park for a pic nic.
Tare her to the Zoo.
The both of you go get a manicure or Pedicure together.
Go visit a Church, see if they have something for Seniors.
See if there's a Day Center that she can go to a few hours during the day to be with other Seniors so she can make a friend.
Do something together with her at home like a 100 pc or less Big Piece Puzzel so it's easy to see or big Paint by number.
Invite an old friend of hers over for dinner.
Prayers
We've been decreasing her Gabapentin slowly but she still takes Lortab for her back pain. Other than those, she was only taking Paxil and Aricept. The APRN added Namenda and a very low dose of Seroquel. The Seroquel is supposed to help with her being confused in the middle of the night about where the toilet is. He said it works right away. Didn't work last night. The alarm I set up in her bedroom went off and I found her sitting at the foot of the bed, diaper pulled down, peeing. I said "what are you doing?" and she replied "I'm peeing" like I had just asked a stupid question. (It's NOT funny but it was kinda funny and sometimes you just have to laugh when you can.)
The APRN also provided a lot of information about AL v. NH and offered to help with forms. So right now we'll see if the re-hydration helps at all and possibly see a nephrologist. I also have an appointment with an elder law attorney in a week to help navigate Medicaid and she sees the neurologist the first of October. So at least I feel like I have somewhat of a plan now.
Further intensive testing isn't always necessary, either. My mother has only been given the short MoCa exams over the past 5 years; they last about 15 minutes and are comprised of some memory questions, drawing the clock face, and a few other things. She's scored on a scale from 1-30. Her first score back in 2016 was 18 meaning she had dementia which would progress. It did. In 2019 she tested at 10 and moved into Memory Care Assisted Living.
I don't think you should wait a long time for answers, no, especially b/c your mother is losing weight so rapidly. Dementia patients don't usually lose their appetites or stop eating to THIS degree until the condition has progressed to the late stages. My mother is in the advanced stage of dementia & STILL eats like a truck driver! So I'd get your mom to a different doctor asap, preferably a neurologist, but stress to him or her that intensive long testing is NOT something she wants to be subjected to. I'm sure the doctor can make an assessment of her w/o putting her through hours & hours of rigorous tests!!
I'm sorry you're going through this. Sending you my best wishes for some good answers here to a difficult situation. Also sending you a hug and a prayer.
This may not sound realistic, but has anyone with a psychiatric background spoken with her and examined her for PTSS? It isn't military alone who are subject to this syndrome. And it can present with the symptoms you mention. The fact that it accelerated after her sister's death suggested to me that that was a trigger.
Animals are used in Veteran PTSS therapy. Are there any neighbors or acquaintances who can bring their pets over to visit her? How she responds to them could indicate that pet therapy might be an option.
You could also buy a stuff animal toy for her to gauge her reaction; sometimes people can gain from hugging something soft.
Two questions: what did her sister die of? What does your mother think is wrong?
I wonder if it might be worth revisiting the neuropsych evaluation, do you? This time perhaps with the emphasis on the psych part?
Three questions, sorry - did anyone identify a cause of the anaemia?
Home healthcare is sending out a psych nurse next week, which I'm grateful for, but this was requested LAST week. The delay in getting help is frustrating to say the least.
They gave her iron for the anemia. We originally thought (hoped) that was causing the symptoms but they got her level back up and unfortunately it didn't help.
Continued brain deterioration over time plus the shock of her sister's death (grief is a physiological and psychological process) may be the culprit in this apparently sudden decline.
The PCP is ruling out the treatable stuff. Changing meds may be a good idea - lortabs are opioids, I believe. Not good for long term use. Low dose of methadone has less side effects and is metabolized more efficiently. Harder for it to build up in the body as the kidneys and liver become less effective in breaking down toxins.
It may be time for residential care of some sort. Take care of yourself, in all of this. Good luck
I also agree that your PCP is very thorough & very much in your team, so to speak. This is very good.
Regardless of diagnosis or lack of - it seems 24 hour care or supervision is needed right now. Obviously this outstrips what one person (you) can do. So unless there is accessible & affordable solutions for such supervision & care to come to your Mother in your home - she will need to go where that is offered.
I cannot work from home, so in your shoes placement would be an instant decision, regardless of dx. I would keep advocating to find out & to find the best fit treatment.
I am wondering about the COPD/emphsemia? About effects of reduced O2, increased CO2?
Also about that Vit B6 deficiency - I think can cause mood change & increased pain? Is there nerve pain, eyesight, balance or mobility issues? (MS & Motor Neuron Diseases?)
May sound silly, but a friend's Dad with multi new symptoms (lived alone) was found to have secretly increased his drinking into unsafe levels. (Said due to pain & worry). This mixed with unstable medication taking & skipped meals caused malnourishment, anaemia & paranoia.
I really hope you can find some answers soon.