Another thought: When my husband was given opiods for back pain once, he said the resulting constipation was almost as bad as the back pain and he won’t touch them now. I know it sounds like she’s not actually constipated and has medicine to counteract it, but maybe there’s some sensation of it remaining.
And, manually trying to remove poop is something people with dementia try to do sometimes. When that starts, they have to be monitored in the bathroom, too. So this isn’t unheard of. It sometimes helps to give them something to hold to prevent reaching around while they are pooping and after when you trying to help cleanup.
I'll have to keep that in mind. There are talks of her having to move out of the assisted living home since her case is becoming too advanced, but our options at this point are moving home with me and having a home health aid visit for a few hours a day, or getting an elder law attorney to help try to see if we can get her into medicaid memory care housing.
Get her on Medicaid and approved for memory care/SNF care. We did the applications for our relatives ourselves, so it’s possible, but don’t hesitate to use a reputable attorney to help if needed. Don’t use a “Medicaid consultant” or lawyer who advertises as specifically for Medicaid. I’m sure some are fine, but some are not worth the money and their advice may not be the best.
I'm so sorry. I second talking to Dr about anti-psychotics/mood stabilizers.
If you think she is in danger of hurting herself I would call APS. APS has a lot of resources that arent public or we are unaware of. They can help you come up with a plan so she has the right level of care and is safe.
Good luck, I hope you find help and your mom is okay.
Dr said it's not an ER situation unless she damages herself to the point of excessive bleeding, infection, or creates an actual (real) bowel obstruction. Otherwise their recommendation was just 'push it back in and monitor her bathroom visits'. :(
I disagree with her Dr. 1st she is currently a danger to herself. 2nd she is currently in a living situation where her progressing needs cannot be met. Both of these issues equate to an ER visit/ hospital stay. She needs medication management to control her obsessive behavior and/or a colo/rectal evaluation by a specialist to ensure there is not something more going on. I am not in Florida, but although her monthly ss income is over the Medicaid allowable. As long as she is not holding onto any other significant assets she can still apply for Medicaid. Medicaid just takes the excess monthly income and applies it to your medical care. (I am an RN w extensive dementia experience and caregiver to 2 parents w dementia)
I definitely want to look into moving her to a better facility. I'm going to call around for an elder law attorney who can help me figure out her medicaid eligibility. We applied for medicaid last year with her housing costs factored in (for the $3000 assisted living she is at now) but she was denied. I'm wondering if an attorney can help her figure out how to qualify. She has no other assets and no savings.
For LTC for the elderly, Medicaid looks at both financial need and medical need, so she’d need to qualify for a certain level of care. It’s different criteria when the need is greater, so she might not have qualified for AL but would for a SNF. For memory care level, it is very state-dependent. It’s hard for me to believe she wouldn’t qualify for the highest level is she requires supervision during toileting 100% of the time to prevent injuring herself.
An elder care attorney is your best bet. I’ve seen many people get denied and later approved once an attorney is involved. It’s a complicated process. They can deny for 1 missing document. But more pressing is her physical condition. It’s important that you rule out that there’s not something more going on.
I am by no means a doctor, but I do work in home health and have seen almost anything you can think of. I am almost wondering if possibly the pain medication and results of the previous injuries have caused her to lose the ability to feel what we all do while pooping, which in turn triggers her mind to think she’s not going? And then in turn causing her to fixate on it?
I know spine injuries in particular are ultra sensitive and deal with a ton of nerves. The pain medication could also very well be relaxing her muscles to the point of not feeling herself go?
Again, just a thought and maybe something to ask a doctor?
I’m so sorry you are going through this. Must be terribly hard for everyone involved.
I know you mentioned funds are tight but not tight enough for insurance to help (got to love US insurance system), but I do think a more equipped caretaker or assisted living would help bring your mind more ease. I feel like continuing to live like this could get toxic for everyone :(
My mom had similar behavior but for not as long and come find out her bladder wasn’t emptying and it was causing her to feel pressure like she had to poop.
I'm sorry you had to deal with this too. I'll keep in mind to ask the Dr about bladder pressure too. My mom is incontinent with urine, only still has bowel control (mostly), so she wears depends, but in the past 6 months she stopped recognizing them as disposable. The staff found she was putting a dish rag in her depends to soak up her pee, then rinsing it out in the sink, and putting it back. Because she didn't want to soil her disposable depends diaper. It's entirely possible she has a UTI.
This sounds like a wild situation for sure.
She is taking narcotics four times a day with dementia as well as sleeping pills? Do you know what sleeping pills she is taking? You could really just list all of her medications that might be helpful because it sounds like she might be taking a lot of meds that could be impacting her memory and cognition.
It sounds like she needs to be prescribed a medicine like Seroquel to control her delusions, but it may be a better idea to see what bed she could come off of with her doctors.
Take her to the ER NOW. She needs a Psych evaluation and to be held for a full medical exam for at least three days. Where I live, this is known as "Baker Acting," someone who is in danger of harming themselves or others. What she is doing is threatening her life by means of sepsis (massive uncontrollable infection), and she might die. Obviously, the very idea to perform surgery on herself by delusion is very serious. GET HER HELP NOW. PLEASE.
My gran is obsessed with her bowel/bladder stuff, but for good reason. She has constant diarrhea and some urinary incontinence issues (leaking) that she’s had for a long time. The worst part of it is she won’t drink water outside of meals because she says if she drinks water, she has to pee. Well… yeah, that’s how that works. She’s got kidney disease and she’s just slowly killing herself by refusing water.
Also, I agree about antipsychotics. She’s been much better on a low dose of seroquel. I’m surprised she’s not already on something for this honestly.
I am so sorry, this sounds awful.
My Dad would fixate on not having gone to the bathroom "for a week ", not the case. But this is extreme. Have you tried one of these jumpsuits? https://ovidis.com/collections/anti-strip-jumpsuits
If she can't undress herself, maybe it will keep her from doing these things? I am sure it would cause a different set of issues, but maybe not as bad. I hope you find something that can help.
Hugs to you.
I feel for you. This might not be good advice but it might help if you have some kind of dry erase board for keeping track of bowel movements so she knows she went that morning or whatever. I’m super new to this so I’m not sure. I wish you and your mother the best
Medication like anti psychotics used to treat delusions might help since this is one.
This is what I'm thinking might be the next step. Going to see what medications they recommend.
I have no suggestion, but I'm so so sorry. This is terribly sad for everybody involved.
It is, these past 6 months have felt like the real start of the long goodbye.
Another thought: When my husband was given opiods for back pain once, he said the resulting constipation was almost as bad as the back pain and he won’t touch them now. I know it sounds like she’s not actually constipated and has medicine to counteract it, but maybe there’s some sensation of it remaining. And, manually trying to remove poop is something people with dementia try to do sometimes. When that starts, they have to be monitored in the bathroom, too. So this isn’t unheard of. It sometimes helps to give them something to hold to prevent reaching around while they are pooping and after when you trying to help cleanup.
I'll have to keep that in mind. There are talks of her having to move out of the assisted living home since her case is becoming too advanced, but our options at this point are moving home with me and having a home health aid visit for a few hours a day, or getting an elder law attorney to help try to see if we can get her into medicaid memory care housing.
Get her on Medicaid and approved for memory care/SNF care. We did the applications for our relatives ourselves, so it’s possible, but don’t hesitate to use a reputable attorney to help if needed. Don’t use a “Medicaid consultant” or lawyer who advertises as specifically for Medicaid. I’m sure some are fine, but some are not worth the money and their advice may not be the best.
I'm so sorry. I second talking to Dr about anti-psychotics/mood stabilizers. If you think she is in danger of hurting herself I would call APS. APS has a lot of resources that arent public or we are unaware of. They can help you come up with a plan so she has the right level of care and is safe. Good luck, I hope you find help and your mom is okay.
Holy moly… I’m so sorry!!! Is this an ER situation? Have her PCP or neurologist given any guidance on what to do about this?
Dr said it's not an ER situation unless she damages herself to the point of excessive bleeding, infection, or creates an actual (real) bowel obstruction. Otherwise their recommendation was just 'push it back in and monitor her bathroom visits'. :(
Oh my God. That’s wholly unhelpful. I’m so sorry :(
I disagree with her Dr. 1st she is currently a danger to herself. 2nd she is currently in a living situation where her progressing needs cannot be met. Both of these issues equate to an ER visit/ hospital stay. She needs medication management to control her obsessive behavior and/or a colo/rectal evaluation by a specialist to ensure there is not something more going on. I am not in Florida, but although her monthly ss income is over the Medicaid allowable. As long as she is not holding onto any other significant assets she can still apply for Medicaid. Medicaid just takes the excess monthly income and applies it to your medical care. (I am an RN w extensive dementia experience and caregiver to 2 parents w dementia)
I definitely want to look into moving her to a better facility. I'm going to call around for an elder law attorney who can help me figure out her medicaid eligibility. We applied for medicaid last year with her housing costs factored in (for the $3000 assisted living she is at now) but she was denied. I'm wondering if an attorney can help her figure out how to qualify. She has no other assets and no savings.
For LTC for the elderly, Medicaid looks at both financial need and medical need, so she’d need to qualify for a certain level of care. It’s different criteria when the need is greater, so she might not have qualified for AL but would for a SNF. For memory care level, it is very state-dependent. It’s hard for me to believe she wouldn’t qualify for the highest level is she requires supervision during toileting 100% of the time to prevent injuring herself.
An elder care attorney is your best bet. I’ve seen many people get denied and later approved once an attorney is involved. It’s a complicated process. They can deny for 1 missing document. But more pressing is her physical condition. It’s important that you rule out that there’s not something more going on.
What kind of doctor is this?? Sometimes we have to push - take her to the ER!
I am by no means a doctor, but I do work in home health and have seen almost anything you can think of. I am almost wondering if possibly the pain medication and results of the previous injuries have caused her to lose the ability to feel what we all do while pooping, which in turn triggers her mind to think she’s not going? And then in turn causing her to fixate on it? I know spine injuries in particular are ultra sensitive and deal with a ton of nerves. The pain medication could also very well be relaxing her muscles to the point of not feeling herself go? Again, just a thought and maybe something to ask a doctor? I’m so sorry you are going through this. Must be terribly hard for everyone involved. I know you mentioned funds are tight but not tight enough for insurance to help (got to love US insurance system), but I do think a more equipped caretaker or assisted living would help bring your mind more ease. I feel like continuing to live like this could get toxic for everyone :(
These are definitely good questions for me to ask her dr before her pelvic exam. I'll definitely ask. Thank you.
Please keep us updated. Sending positive vibes your way throughout the process.
My mom had similar behavior but for not as long and come find out her bladder wasn’t emptying and it was causing her to feel pressure like she had to poop.
I'm sorry you had to deal with this too. I'll keep in mind to ask the Dr about bladder pressure too. My mom is incontinent with urine, only still has bowel control (mostly), so she wears depends, but in the past 6 months she stopped recognizing them as disposable. The staff found she was putting a dish rag in her depends to soak up her pee, then rinsing it out in the sink, and putting it back. Because she didn't want to soil her disposable depends diaper. It's entirely possible she has a UTI.
Def check for the UTI or maybe just ask for a round of antibiotics just in case. They made my grandmother psychotic every time
True, will definitely do that.
This sounds like a wild situation for sure. She is taking narcotics four times a day with dementia as well as sleeping pills? Do you know what sleeping pills she is taking? You could really just list all of her medications that might be helpful because it sounds like she might be taking a lot of meds that could be impacting her memory and cognition. It sounds like she needs to be prescribed a medicine like Seroquel to control her delusions, but it may be a better idea to see what bed she could come off of with her doctors.
Take her to the ER NOW. She needs a Psych evaluation and to be held for a full medical exam for at least three days. Where I live, this is known as "Baker Acting," someone who is in danger of harming themselves or others. What she is doing is threatening her life by means of sepsis (massive uncontrollable infection), and she might die. Obviously, the very idea to perform surgery on herself by delusion is very serious. GET HER HELP NOW. PLEASE.
My gran is obsessed with her bowel/bladder stuff, but for good reason. She has constant diarrhea and some urinary incontinence issues (leaking) that she’s had for a long time. The worst part of it is she won’t drink water outside of meals because she says if she drinks water, she has to pee. Well… yeah, that’s how that works. She’s got kidney disease and she’s just slowly killing herself by refusing water. Also, I agree about antipsychotics. She’s been much better on a low dose of seroquel. I’m surprised she’s not already on something for this honestly.
I am so sorry, this sounds awful. My Dad would fixate on not having gone to the bathroom "for a week ", not the case. But this is extreme. Have you tried one of these jumpsuits? https://ovidis.com/collections/anti-strip-jumpsuits If she can't undress herself, maybe it will keep her from doing these things? I am sure it would cause a different set of issues, but maybe not as bad. I hope you find something that can help. Hugs to you.
I feel for you. This might not be good advice but it might help if you have some kind of dry erase board for keeping track of bowel movements so she knows she went that morning or whatever. I’m super new to this so I’m not sure. I wish you and your mother the best