Hello, phew i've got one to get off my chest. My mother was diagnosed with Alzheimers back in 2013 and let go of her job. My dad became here primary caregiver. since then her symptoms have slowly gotten worse. last time i saw her she was in a coma state as she has been for the last few years.
My dad takes care of her, only his judgement and methods are very questionable. he claims that God is allowing her to suffer and absolutely refuses to bring her somewhere, he isn't open to conversation about it either.
She is in the very late stages where death is basically the next step. i've seen her have seizures. she has trouble swallowing food, can't chew it all up properly. she is dangerously underweight, she is stiff as a rock, has bruises on her body from who knows what. her limbs turn purple. she can't even stand on her own strength.
My dad absolutely cannot keep taking care of her. he doesn't bring her to medical appointments either, he leaves her home alone, sometimes for long periods of time, basically man handles her when he tries to move her and then gets upset when she doesn't cooperate. i don't know this for certain but i believe my dad was using her disabililty checks to pay off his house NOT get her the appropriate care she needs.
I have siblings and we have all confronted each other that we disagree the next step is confrontation but they are hesitant. I can tell. my dad comes from a very toxic family which is not his fault but I am literally starting to see some of that toxicity manifest between us and I know its because of this situation.
I've called the aps hotline but haven't filed a report i guess because i know it would trigger some very ugly feelings. but i called them and gave them moderate details and they said it definitely sounds like a neglectful situation. i was home a few weeks ago and i couldn't stand being in that house. its like my instincts knew that someone is dying right in front of me yet my dad refuses to acknowledge this.
I guess my question here, does anyone have any advice on how to cope? I am very inclined to call aps and get a report submitted but i know that once i do that there is no going back. whatever the outcome is.
any advice or thoughts are very much appreciated
I love my dad and i love my family but sometimes things done with good intentions can end up doing more harm than good.
Thank you and God bless everyone.
Would your father be open to having Hospice services in the home? They can help to make her comfortable, and if they feel she is not being cared for safely, they will call APS, as mandated reporters. It should not cost anything. They will bill to Medicare. They provide comfort care, medications, incontinence supplies, a weekly bath assist (even if she is confined to bed), and a weekly nurse visit.
Don't leave it as a suggestion for your dad to follow up on. If he is accepting of hospice care for her, you call a local hospice care service and set up the first assessment appointment.
If you think she is not eating enough, try making thickened protein shakes for her, in a flavor which she would enjoy. I like Nestle Resource Thicken-Up Clear, mixed with vanilla boost for my husband with Dysphagia. Please learn about dysphagia. That is a condition in which a person can not safely chew and swallow food. If she aspirates, that is, food or liquid goes down her airway, it will create a painful and slow death for her at this point.
i am becoming more aware of hospice care and my sister has brought it up as well.
i've also come across the term dysphagia in looking up the symptoms of alzheimers. it is very frightening, my mother definitely has trouble chewing her food and i've seen her drooling it onto herself several hours after she has eaten still.
thank you again
There are people who love to troll on forums. Please keep in mind that some of us are RNs, CNA's, and HHAs and can pick up inconsistencies in stories.
talking with REAL people about REAL situations.
i asked a question with some details
all one has to do here is post an answer here and leave it at that
that is literally it.
but i learned an important lesson and perhaps some of you told me a few things i just didn't want to hear. either way, i still ultimately got some answers that pointed me in a direction.
this is a very complicated situation within my family and there's a lot that i probably didn't do the best at explaining. and there's even more to it than what i even said. if no one wants to believe it, that is perfectly fine with me. i'm not here to prove anything
i'll give you all some closure though, i did reach out to someone from aps in the county and will be in touch with them Monday morning to further talk about it with them.
as for this posted question, it'll probably be gone by tomorrow
speaking up about this type of thing can be very intimidating and i would hate for someone else to read here and be scared away from speaking up on their own situation seeing how yall are on forums.
bringing awareness about this type of stuff should be encouraged and supported in a positive light
not a condemning manner
thank you all again
And thank you for sharing the experience. That sounds like a tough situation and very frustrating to say the least.
I like to hear others experiences with situations cause it helps me understand my own situation better and how I might go about it. So thank you again.
After all, there is nothing new under the sun.
If you don't mind me asking...
Does your cousin still help or did you have to go about an alternative situation?
This is a place to ask questions and share thoughts and experiences.
a place to help eachother out.
I would be lying if I said I know what the best thing to do in a situation like this.
You are right comatose is not the correct word but I wouldn't use conscious either so it's somewhere in between
I am a Home Health Aide and Certified Nursing Assistant. I have seen different types of dementia and how it progresses. It sounds like your mother is in the final stages. My suggestion is to read about the different stages of dementia.
You said that she has been in a coma for three days. People with dementia will sleep for long periods of time especially around the final stages.
About the diet: Once someone gets to this point where the swallowing and gag reflexes are no longer working properly, a dietary change is a must. Pureed, nectar thickness or pudding thick foods would be the best choice. If she doesn't feel like eating maybe offering Ensure or some type of milkshake for calories. Offer juice and water for hydration.
How is her mobility? Is she total care in bed or does she still sit up in chairs with assitance?
Skin changes: Bluish and mottled skin in the lower extremities can signal that there is something happening. A Hospice RN would be able to tell what is happening to your mom at this stage. Hospice nurses will come in and do an assessment, take vitals and make suggestions about care and diet.
Hospice is free. Also, if you don't want to go the APS route because it seems too punitive, please contact the Department of Aging in the City and State where your parents live. If it is a good agency, they will give you a list of resources to work with. See if they have resources for physicians who do actual house calls for elderly people who can no longer travel.
It sounds like both parents need help at this point. Dad is no longer able to make rational decisions because he is failing and probably in poor health himself.
About religion: I had to learn to separate proper care from magical thinking. Magical thinking does not work. True faith works along with proper care.
I wish you peace and sound mind and reasoning in this endeavor. Trust and believe, it will work out when you follow a clear plan of action and not one of denial and wishful thinking.
probably close to 3 years maybe even more
she basically sleeps most of the day at this point
her diet definitely is not suitable,
my dad feeds her regular food, pasta, cuts of meat, veggies and not much soft food
i would definitely say she is malnourished.
she has NO mobility on her own, every movement needs to be assisted and her limbs are extremely stiff
my dad lets her stand a couple times a day for 30 minutes but she has to lean in a corner to support herself
She usually screams and shouts a lot during this I've noticed
her skin color is awful. her whole aura is just pale and lifeless. i've seen her limbs turn purple too.
i am not aware that hospice is free
do you have any info where i could look into this more?
Think about that. What's better? To get APS involved now or the police later?
this is what i need help with understanding.
i've heard stories before of parents refusing to get children care because they think it's God's will or something ridiculous and there being severe consequences for the family
and i think about this with my dad all the time
all it takes is the wrong set of eyes to misunderstand the situation and sound the alarm on him
he has been lucky enough to not have that happen.
i understand that people have the right to make decisions for themselves
i understand that it is not a crime to have toxic behavior (to a degree)
but at what point is it crossed the line?
at what point does it become absolutely ridiculous?
at what point does it become necessary to go above everyone else and get some type of intervention that this cannot continue?
yea, its been eating away at me real bad lately
its sunny and a beautiful day
and i can't sit here in good conscious with myself knowing the situation is occuring and i am capable of doing something about it
I find it utterly appalling and disgusting that you nor any of your siblings haven't stepped up to do what is right by your mom, all because you're afraid of rocking the boat with your dad.
You are all guilty of abusing your poor mom at this point by standing by and doing nothing, and I can only hope and pray that at least one of you will be man/woman enough to do what is right for your mom before it's too late.
So stop with the excuses and either call 911 NOW and have mom taken to the hospital where she will be looked after properly or the hospice agency of your choice as they're available 24/7 and will come out and do an assessment today.
You say in the comments that you only visit once a year. So because you don't see your mother but once a year how she appears to you is going to be shocking. To the person or people who see her regularly, it is not shocking but sad.
I have had many care clients in the last stages of Alzheimer's Disease who were exactly in the state you say your mother is in. They were not neglected. They were very well cared for by family and competent, professional homecare workers.
Your mother being in a near comatose state at this point is common with late stage Alzheimer's. Thinning of skin and bruising easily is pretty common with elderly people in general even ones who are not in the final stages of Alzheimer's and are getting adequate nutrition. It is all but guaranteed for someone in your mother's condition. As for your father not taking her to appointments, there does come a time when the person cannot be taken out anymore even by professional caregivers with decades of experience in this line of work. At some point getting to the doctor's office involves an ambulance and paramedics to do the transport. Unless the person has great insurance, in my state the cost of that is about $3,000 out of pocket.
Based on what you've written, the only part you are right about is that your father cannot continue caring for an invalid with late stage Alzheimer's on his own anymore. He is not a trained homecare worker. So instead of making a once a year visit and reporting on your father to APS for abuse, why don't you and your siblings actually start helping out with your mother's care.
Here would be some good ways to start:
1) Provide some free baby-sitting service so your father can go out if he needs or wants to so he doesn't have to leave your mother alone
2) You and your siblings start handling the doctor's appointments. You and them figure out how to get her there and back and teach your father how to do virtual doctor's appointments so she won't have to be taken out.
3) Bring in some professional help. Visiting nurse once a week. Granted nurses in homecare do next to nothing but they will arrange for some CNA's who do the actual hands-on work involved. Insurance will cover some, but it's likely there will be out-of-pocket cost. If your parents can't afford it, you and your siblings should discuss how the lot of you will pay for some help.
4) You and your siblings can take turns staying at your parents' house and caregiving for your mother.
5) You and your siblings can help get your mother placed in a care facility appropriate to her needs.
As for your father using your mother's disability check to pay off 'his' house. It's their house because they are married and both living there.
the difficulty with this is that my siblings and i are all grown up and some of them have children of their own and their own lives and families to tend to.
my father has had help in the past, but his refusal to consider anyone else's perspective has pushed people away from helping him.
he is absolutely NOT open to any form of conversation or resolution he is set in his ways. she doesn't even receive basic check ups or medical treatment of any kinds.
my mother is showing the end stages very clearly and that is not something you can just sit on a couch with on a sunny afternoon and be at ease. it is painful and unsettling.
but again, i really appreciate you giving me your thoughts
Yes!
"Should i call APS?"
YES right now.
Here is defenseless a woman with no one advocating for her. Your Dad has expressed outloud that he thinks it's ok for her to *suffer*. What is there to ponder about this situation? Wake up! You need to call APS right now. If it were YOU rotting away and suffering with no voice, wouldn't you want someone to come rescue you??
What might happen? The courts assign her a legal guardian who WILL advocate in her best interests. She will go into hospice where she will get the comfort care she finally needs and deserves. One of your siblings should request she be located near them so they can keep an eye on her. My family has had a very positive experience with court assigned legal guardianship for my SFIL.
Don't worry about your Dad or his feelings. Most likely he has some cognitive decline himself. If he was a poor decision-maker in the past, it's not going to get any better with advancing age and mental decline. Maybe he himself needs a legal guardian.
What outcome do I wanna see?
Exactly what you said. Just to have her last days be spent comfortable in peace and not be seen in her current state
Unfortunately no one knows what my mom would prefer
She isn't even conscious anymore and can't even speak
My dad wants to do it this way though and now he is in over his head it's hard to be in the same room with him cause he won't respect how me or my siblings feel about it
They definitely did something to his mind cause his reasoning and logic is beyond absurd
Since you have broken the ice so to speak by talking to them before, you might call them again and ask what the ER procedure is when someone is brought to ER in possibly abused condition. I would be ready to be questioned. I might even call an attorney but it will get sorted. And it might be sorted quicker if the hospital called.
Another thing to realize is that Medicaid does not take everything away from dad. When there is a couple, Medicaid splits their assets and only mom’s assets are used for her care. In fact if dad needed a portion of moms assets such as part of her social security to pay his mortgage etc, Medicare will allow that. Each state has their own rules but you can find this information by going to their state Medicaid website. He’s allowed to keep his home, a car and enough to live on.
As you said you know things will change. That’s right. But it needs to change. And he has left you no choice.
Wishing you the best and let us know if we can help with other issues.
And thanks for pointing that out
See i am unfamiliar with all these medicaid and Medicare stuff but I'll do my homework
Do you have recommendations where to look for an attorney?
I live out of state and visit once a year but my sister lives within 20 minutes
I've brought the idea of calling aps up to all my siblings and I know they want things to change as well but I know they are hesitant and recent conversations about this sort of just fade with no real solution
I hate to be the odd man out in this situation but my conscious keeps telling me to just go ahead and make the call regardless what they think
All the best to you and your family.
i definitely see it wearing on him
and he knows it too
but just refuses help
i have no intention of making him out to be the bad guy whatsoever
but things have to change
cycles need to break
do you have any experience with that type of situation?
And no, your mother does not need to be uncomfortable and miserable in her final days. Stop listening to your father's line of reasoning. It's not reasonable behavior, it's abusive.
i guess another thing holding me back is not understanding all the legalities of the situation once i do make the call
i'm not her POA or anything and i don't really know who is to be honest it may be my dad
but i mean yea, it gets hard to watch after so many years...
i really appreciate it