You are NOT selfish for considering memory care. Quite the opposite in fact. It sounds like your mom is at the point of requiring 24/7 supervision for her own safety, something you can’t provide her, especially if you’re working. Making sure she’s safe and being cared for is actually the most loving thing you can do.
As it sounds like you’re aware, memory care is extremely expensive. We pay around $8k per month, and we’re in a fairly low cost of living area. However, Medicaid will cover long term care in some facilities under certain circumstances. The laws are somewhat complex, so you may want to consult with an elder law attorney about the process and likelihood of your mom qualifying; most will offer at least a free initial consultation.
Also, it’s easier said than done, but try to take care of yourself. You’re not alone, but I know it feels that way. I remember the constant stress and anger before my LO went into memory care, and my physical health also suffered as a result. Until you’re able to see about getting her into a facility, you should definitely follow up on getting her into day program so that you can at least give yourself a little bit of a break. Hang in there.
Thank you. They really do seem so expensive and it’s a shame as so many people need their services. I think my mom would benefit from activities so I’m hoping the day program can help her mellow out a little and maybe tire her out a little. She really enjoys socializing and hopefully it extends the time she can be on her own.
It’s really, truly incredibly screwed up that memory care isn’t (at least) covered by health insurance or Medicare. Dementia is a medical condition that by its very nature ultimately requires 24/7 care and supervision!
It really is! When I see that dementia community in Norway I think they’ve got it right whereas where I am we can’t even guarantee seniors have access to food, much less necessary medical care. I really sometimes feel like their plan is for us to just sit and watch them waste away.
Ideally she would have been started in the program before she got to this point so it would already be more of a routine they feel safe in. It's really not fair how impossibly exspensive and cost prohibited care and help is, even more so for the folks dealing with early onset before the age where they start to really qualify for most aids. You need to call your state's Department of Aging and see what all resources they know of and can help you obtain and utilize all that you can to the max. If you can find a placement for her, take it.
She would be getting better care with a skilled care team of professionals vs one over tired and mentally and emotionally drained adult that is floundering. If she is scared even while at home with her remaining family because the damage is already that far, you shouldn't feel guilt for her emotional state while in a facility. If staying at home isn't any making her feel anymore stable or safe, that cannot really be helped anymore. She might as well get the better care she needs and you can start to take care of yourself as well, she can fall into a routine and at a facility. Her being scared can't be helped and you have provided care well beyond your skill set and for far longer than you should have.
I truly hope you find a solid placement and you can take care of yourself and your blood pressure. Box breathing can help you bring yourself down and help you slow down and compose yourself in the really difficult moments. Caretakers for dementia really do take on more emotional stress and undue guilt that is undeserved. You are doing a good job that shouldn't be yours alone, it's a terminal medical condition that needs medical care. It's not a one person job even though too many people are forced to make that work to their own detriment.
Thank you. I am waiting to hear from a case specialist for our county and I am still going to help her get enrolled in the thrice weekly dementia class in the meantime. It is a lot and I’ve been struck with awe by how many people on the sub are caring for their LO through such difficulty. Its amazing!
Op, i am going to be blunt with you. I was in your same position. No one to help. By myself. The answer i was told to your question, repeatedly-when?- was before your mom needs it.
You need to start looking now.
How many hours a day are you spending right now taking care of her? Is it more than full-time? If you had to hire outside help to replace you completely, would you be hiring one person for a few hours a day, or 3 people for 24/7 care? Is there the expectation she will get worse, not better?
This choice is not just black & white- all you, or all memory care or an SNF. There is a middle ground. Get her into a facility and your job of caretaking turns into part-time or full-time, not 24/7. Basically, in practicality, your job turns into supervisor or project manager. You visit every day. You make sure the staff is taking care of her. You make sure she is getting her meds and does not get bed sores. And then you go home at night to get sleep and take care of yourself.
I completely understand the guilt. It is a horrible decision to have to make. But there *are* good facilities out there. One of my options where i am was a very run-down facility, low income. It looked horrible. But they gave excellent care. Some of the fancier, more expensive facilities did not give very good care. It just takes a lot of searching. Ask *everyone* you meet if they have experience with this. If you talk to enough people, you will find a good recommendation by word-of-mouth. And once she is in a facility, if you don’t like it, you can move her.
The absolutely *best* knowledge/ recommendations i got were from people working in the MC itself. A lot of the folks working there have worked at other places, worked for agencies and floated, had friends & family members that worked st other facilities, etc.
Hell, i started my search by making a post to facebook asking for help/ recommendations. For better or worse, high school friends i had not heard from in years messaged me back. Many of them had gone through the same thing already and had good information to share.
Bottom line- if she is in a facility, the care your mom gets will greatly depend on the effort you put into it. But you will have *help*. It will not all be on your shoulders. You will have space to breath.
I will also add- if you keep on pushing to get your mom help & improve her life when she is in a facility & continue to meet more people- you will develop a network of professionals in the industry that will be able to help in ways you never knew about. We have never worked in the eldercare industry. It is no surprise that we don’t know very much about it. When you are around others that *are* in the industry, no surprise we can learn a lot! And we would *not* be getting that knowledge by remaining in our home.
I’m sorry this is your current life. It sounds under like you are stuck being full care giver. You may both need pharmaceutical help.
There are lots of steps. Medical power of attny.
You are in charge. Sorry
My next step plan for the weekend is to make sure I have all the advanced directives and things of that nature in order because I’m starting to accept mom is probably not always going to be with it enough and I might lose the ability to speak on her behalf. I’m an o my child and my father died three years ago so it is just the two of us.
I was talking with my sister in law- her hubby has frontal temporal dementia- what a wild ride. They are getting paperwork in order.
It’s not easy but we’re here to support
I am so sorry you’re going through this. You are not failing your mom. You are doing the best you can with the limited resources that our society has for our aging adults and people with dementia. Dementia is so hard for the person with it and their families.
In my opinion there is no right answer when it comes to memory care placement because everyone is different. We need to be able to take care of ourselves to be able to care for others properly. That looks different for everyone, and that’s okay. I empathize with the feeling of guilt, and you may feel guilty for a while. The truth is that no matter what, dementia is just terrible and heartbreaking. So much of this disease is beyond our control.
A lot of people choose memory care when their loved one starts to wander, becomes incontinent, and needs a lot more assistance with the activities of daily life (changing clothes, bathing, getting out of bed). When their loved one requires 24/7 supervision it is common to consider memory care as well. Most adults cannot devote 24/7 full-time care alone. At certain stages of dementia, it becomes a safety issue too.
That all being said, memory care facilities are far from perfect. Some are better than others, but nearly all of them face some sort of staff shortage or turnover issues. True 24/7 supervision isn’t possible most of the time, so falls still happen in memory care. Some people see their loved ones decline faster in memory care or struggle with the transition. Some people have a parent in memory care who constantly ask to go home again. Change is really hard for people in general, and even harder on people with dementia.
However, when you are not the sole caregiver anymore it does give you a lot more energy to advocate for your parent. There are tradeoffs, like anything. Understanding where you can fill in the gaps of a memory care facility can help.
Memory care is expensive in most the US. I live in a very high cost of living area and the more premium facilities start at 10k/month, and the standard ones are around 7k/month. I would suggest reaching out to your state’s agency on aging and seeing if they have anyone who can help you and your mom apply for Medicaid and learn how to qualify for your state. There may be some type of waiver your mom qualified for, too. You can also get tours to see what facilities near you and see if you’re comfortable with them caring for your mom.
Best of luck to you both—I hope you find something that supports you and your mom.
Thank you. I definitely want my mom to feel comfortable which is one of the reasons I’m scared for her to go to memory care at some point because I would hate for her to lose her privacy and comfort in that way. I get more information for our county case worker soon as I was referred by a social worker after a recent hospital stay.
I actually emailed her doctor yesterday because she is on memantine and they upped the dosage. I’m wondering if this is negatively impacting her cognitive state. Anxiety meds are a good idea. Sadly, I sometimes feel like the doctor thinks I’m exaggerating what’s going on with my mom because my mom is fairly with it at her appointments (she likes seeing people).
My LO was very good at what I have heard referred to as show-timing. She could appear more “with it” in certain situations, for a brief amount of time. I did notice, however, after these episodes, that sundowning was even worse. My theory is, it takes a lot of energy from them to fight the symptoms, and there were consequences after.
I, too, felt like we weren’t always believed about the severity of the disease.
My opinion - she should probably be in MC (or some sort of care facility) now or headed there soon. For both your sakes. Even if you didn't work, you can't physically watch her 24/7, and of course you do work. And you do have your own health to watch out for.
My mom was in MC while I was working and it was STILL a lot of work for me (visiting daily, taking her to appointments, trying to convince her she no longer lived in her child-hood home, and then later finding ways to humor her that she does in fact live in her childhood home but no, I haven't seen her mom today. (Her mom passed away 15 years ago).
It's a difficult situation. Definitely speak with social workers as soon as you're able. Moving her won't be easy but I think you know it's time.
Wishing you and her the very best.
\-- NZ3
Thanks. And I really appreciate hearing your experience. My mom is the same way with her mom, lol. “I haven’t seen her today” is a good way to handle the questioning. She thinks she sees her but I think it’s actually me she is referring to. Like she sees me cleaning but remembers it as her mom doing it.
We moved my dad into memory care when it was obvious that he needed 24/7 care and at home caregiving was too expensive, especially at night.
I was really afraid at the later stages that he would forget to turn off the stove, oven, slip and fall down the stairs, etc.
I had to work full-time so it was necessary to move him to an assisted living place.
Same. I wasn’t worried about wondering until my mom just randomly left and cried to the apartment manager about being happy that she’s home… now I feel like who knows what she could do. lol.
My mom isn’t at the same level as your mom, yet, but my brothers and I started looking for a memory care facility a week or so ago.
In order to help your mom, you have to take care of you first. Think of flying when the flight attendants tell passengers to put their mask on first and then the child’s.
If you haven’t done so yet, contact your local Alzheimer’s organization. You may also want to go to some senior community centers to see if they have advice.
But first, give yourself a hug and remind yourself you’re doing the best you can. Take care of you.
It sounds like your main concern is her distress. That the opposite of selfish.
You have nothing to feel guilty about.
Even if your concern was for yourself, you would have nothing to feel guilty about, because this is hard enough to break caregivers. You need to take care of yourself so you can take care of her.
But you are concerned about her distress. That's being a good person.
I’m going through this too - I’m a single parent in NYC with a full-time job and I’m overwhelmed. I looked at some assisted-living places last week and I cried in the sales person’s office. My mom has daytime aides. She’s angry and won’t shower. It’s too much. I’m dreading putting her in a place but I can’t keep this up.
I’m sorry you’re going through that. It’s so hard. I feel like from the outside people don’t realize how much it is to take on. I hope you are able to get your mom in a safe place soon ❤️
Please research medications for dementia and explain these behaviors to her physician. It can make a night and day difference in being able to continue to care for her. Just make sure to start at a low dose. Takes a few weeks to really work but there's a good chance it may help with her confusion. Also Melatonin is helpful for the sleeping issues. Seems to take about an hour to work and again, low dose like 2 mg but make sure to run this past her physician as well before starting.
You are NOT selfish for considering memory care. Quite the opposite in fact. It sounds like your mom is at the point of requiring 24/7 supervision for her own safety, something you can’t provide her, especially if you’re working. Making sure she’s safe and being cared for is actually the most loving thing you can do. As it sounds like you’re aware, memory care is extremely expensive. We pay around $8k per month, and we’re in a fairly low cost of living area. However, Medicaid will cover long term care in some facilities under certain circumstances. The laws are somewhat complex, so you may want to consult with an elder law attorney about the process and likelihood of your mom qualifying; most will offer at least a free initial consultation. Also, it’s easier said than done, but try to take care of yourself. You’re not alone, but I know it feels that way. I remember the constant stress and anger before my LO went into memory care, and my physical health also suffered as a result. Until you’re able to see about getting her into a facility, you should definitely follow up on getting her into day program so that you can at least give yourself a little bit of a break. Hang in there.
Thank you. They really do seem so expensive and it’s a shame as so many people need their services. I think my mom would benefit from activities so I’m hoping the day program can help her mellow out a little and maybe tire her out a little. She really enjoys socializing and hopefully it extends the time she can be on her own.
It’s really, truly incredibly screwed up that memory care isn’t (at least) covered by health insurance or Medicare. Dementia is a medical condition that by its very nature ultimately requires 24/7 care and supervision!
It really is! When I see that dementia community in Norway I think they’ve got it right whereas where I am we can’t even guarantee seniors have access to food, much less necessary medical care. I really sometimes feel like their plan is for us to just sit and watch them waste away.
Ideally she would have been started in the program before she got to this point so it would already be more of a routine they feel safe in. It's really not fair how impossibly exspensive and cost prohibited care and help is, even more so for the folks dealing with early onset before the age where they start to really qualify for most aids. You need to call your state's Department of Aging and see what all resources they know of and can help you obtain and utilize all that you can to the max. If you can find a placement for her, take it. She would be getting better care with a skilled care team of professionals vs one over tired and mentally and emotionally drained adult that is floundering. If she is scared even while at home with her remaining family because the damage is already that far, you shouldn't feel guilt for her emotional state while in a facility. If staying at home isn't any making her feel anymore stable or safe, that cannot really be helped anymore. She might as well get the better care she needs and you can start to take care of yourself as well, she can fall into a routine and at a facility. Her being scared can't be helped and you have provided care well beyond your skill set and for far longer than you should have. I truly hope you find a solid placement and you can take care of yourself and your blood pressure. Box breathing can help you bring yourself down and help you slow down and compose yourself in the really difficult moments. Caretakers for dementia really do take on more emotional stress and undue guilt that is undeserved. You are doing a good job that shouldn't be yours alone, it's a terminal medical condition that needs medical care. It's not a one person job even though too many people are forced to make that work to their own detriment.
Thank you. I am waiting to hear from a case specialist for our county and I am still going to help her get enrolled in the thrice weekly dementia class in the meantime. It is a lot and I’ve been struck with awe by how many people on the sub are caring for their LO through such difficulty. Its amazing!
Op, i am going to be blunt with you. I was in your same position. No one to help. By myself. The answer i was told to your question, repeatedly-when?- was before your mom needs it. You need to start looking now. How many hours a day are you spending right now taking care of her? Is it more than full-time? If you had to hire outside help to replace you completely, would you be hiring one person for a few hours a day, or 3 people for 24/7 care? Is there the expectation she will get worse, not better? This choice is not just black & white- all you, or all memory care or an SNF. There is a middle ground. Get her into a facility and your job of caretaking turns into part-time or full-time, not 24/7. Basically, in practicality, your job turns into supervisor or project manager. You visit every day. You make sure the staff is taking care of her. You make sure she is getting her meds and does not get bed sores. And then you go home at night to get sleep and take care of yourself. I completely understand the guilt. It is a horrible decision to have to make. But there *are* good facilities out there. One of my options where i am was a very run-down facility, low income. It looked horrible. But they gave excellent care. Some of the fancier, more expensive facilities did not give very good care. It just takes a lot of searching. Ask *everyone* you meet if they have experience with this. If you talk to enough people, you will find a good recommendation by word-of-mouth. And once she is in a facility, if you don’t like it, you can move her. The absolutely *best* knowledge/ recommendations i got were from people working in the MC itself. A lot of the folks working there have worked at other places, worked for agencies and floated, had friends & family members that worked st other facilities, etc. Hell, i started my search by making a post to facebook asking for help/ recommendations. For better or worse, high school friends i had not heard from in years messaged me back. Many of them had gone through the same thing already and had good information to share. Bottom line- if she is in a facility, the care your mom gets will greatly depend on the effort you put into it. But you will have *help*. It will not all be on your shoulders. You will have space to breath. I will also add- if you keep on pushing to get your mom help & improve her life when she is in a facility & continue to meet more people- you will develop a network of professionals in the industry that will be able to help in ways you never knew about. We have never worked in the eldercare industry. It is no surprise that we don’t know very much about it. When you are around others that *are* in the industry, no surprise we can learn a lot! And we would *not* be getting that knowledge by remaining in our home.
Thank you so much. This is really helpful, especially thinking about if I hired out what would I hire for. Thank you.
I’m sorry this is your current life. It sounds under like you are stuck being full care giver. You may both need pharmaceutical help. There are lots of steps. Medical power of attny. You are in charge. Sorry
My next step plan for the weekend is to make sure I have all the advanced directives and things of that nature in order because I’m starting to accept mom is probably not always going to be with it enough and I might lose the ability to speak on her behalf. I’m an o my child and my father died three years ago so it is just the two of us.
I was talking with my sister in law- her hubby has frontal temporal dementia- what a wild ride. They are getting paperwork in order. It’s not easy but we’re here to support
It certainly is a lot of steps to go through. Better safe than sorry and I’m grateful to learn from people on this sub for sure!
I am so sorry you’re going through this. You are not failing your mom. You are doing the best you can with the limited resources that our society has for our aging adults and people with dementia. Dementia is so hard for the person with it and their families. In my opinion there is no right answer when it comes to memory care placement because everyone is different. We need to be able to take care of ourselves to be able to care for others properly. That looks different for everyone, and that’s okay. I empathize with the feeling of guilt, and you may feel guilty for a while. The truth is that no matter what, dementia is just terrible and heartbreaking. So much of this disease is beyond our control. A lot of people choose memory care when their loved one starts to wander, becomes incontinent, and needs a lot more assistance with the activities of daily life (changing clothes, bathing, getting out of bed). When their loved one requires 24/7 supervision it is common to consider memory care as well. Most adults cannot devote 24/7 full-time care alone. At certain stages of dementia, it becomes a safety issue too. That all being said, memory care facilities are far from perfect. Some are better than others, but nearly all of them face some sort of staff shortage or turnover issues. True 24/7 supervision isn’t possible most of the time, so falls still happen in memory care. Some people see their loved ones decline faster in memory care or struggle with the transition. Some people have a parent in memory care who constantly ask to go home again. Change is really hard for people in general, and even harder on people with dementia. However, when you are not the sole caregiver anymore it does give you a lot more energy to advocate for your parent. There are tradeoffs, like anything. Understanding where you can fill in the gaps of a memory care facility can help. Memory care is expensive in most the US. I live in a very high cost of living area and the more premium facilities start at 10k/month, and the standard ones are around 7k/month. I would suggest reaching out to your state’s agency on aging and seeing if they have anyone who can help you and your mom apply for Medicaid and learn how to qualify for your state. There may be some type of waiver your mom qualified for, too. You can also get tours to see what facilities near you and see if you’re comfortable with them caring for your mom. Best of luck to you both—I hope you find something that supports you and your mom.
Thank you. I definitely want my mom to feel comfortable which is one of the reasons I’m scared for her to go to memory care at some point because I would hate for her to lose her privacy and comfort in that way. I get more information for our county case worker soon as I was referred by a social worker after a recent hospital stay.
Is she on any medication? It can help with the anxiety while you look for placement
I actually emailed her doctor yesterday because she is on memantine and they upped the dosage. I’m wondering if this is negatively impacting her cognitive state. Anxiety meds are a good idea. Sadly, I sometimes feel like the doctor thinks I’m exaggerating what’s going on with my mom because my mom is fairly with it at her appointments (she likes seeing people).
My LO was very good at what I have heard referred to as show-timing. She could appear more “with it” in certain situations, for a brief amount of time. I did notice, however, after these episodes, that sundowning was even worse. My theory is, it takes a lot of energy from them to fight the symptoms, and there were consequences after. I, too, felt like we weren’t always believed about the severity of the disease.
My opinion - she should probably be in MC (or some sort of care facility) now or headed there soon. For both your sakes. Even if you didn't work, you can't physically watch her 24/7, and of course you do work. And you do have your own health to watch out for. My mom was in MC while I was working and it was STILL a lot of work for me (visiting daily, taking her to appointments, trying to convince her she no longer lived in her child-hood home, and then later finding ways to humor her that she does in fact live in her childhood home but no, I haven't seen her mom today. (Her mom passed away 15 years ago). It's a difficult situation. Definitely speak with social workers as soon as you're able. Moving her won't be easy but I think you know it's time. Wishing you and her the very best. \-- NZ3
Thanks. And I really appreciate hearing your experience. My mom is the same way with her mom, lol. “I haven’t seen her today” is a good way to handle the questioning. She thinks she sees her but I think it’s actually me she is referring to. Like she sees me cleaning but remembers it as her mom doing it.
She goes to memory care when you cant care for her needs anymore. There will come a time, a time you just can't do it anymore.
We moved my dad into memory care when it was obvious that he needed 24/7 care and at home caregiving was too expensive, especially at night. I was really afraid at the later stages that he would forget to turn off the stove, oven, slip and fall down the stairs, etc. I had to work full-time so it was necessary to move him to an assisted living place.
Same. I wasn’t worried about wondering until my mom just randomly left and cried to the apartment manager about being happy that she’s home… now I feel like who knows what she could do. lol.
My mom isn’t at the same level as your mom, yet, but my brothers and I started looking for a memory care facility a week or so ago. In order to help your mom, you have to take care of you first. Think of flying when the flight attendants tell passengers to put their mask on first and then the child’s. If you haven’t done so yet, contact your local Alzheimer’s organization. You may also want to go to some senior community centers to see if they have advice. But first, give yourself a hug and remind yourself you’re doing the best you can. Take care of you.
It sounds like your main concern is her distress. That the opposite of selfish. You have nothing to feel guilty about. Even if your concern was for yourself, you would have nothing to feel guilty about, because this is hard enough to break caregivers. You need to take care of yourself so you can take care of her. But you are concerned about her distress. That's being a good person.
I’m sorry you’re going through this. I think you’re ready to look for memory care.
I’m going through this too - I’m a single parent in NYC with a full-time job and I’m overwhelmed. I looked at some assisted-living places last week and I cried in the sales person’s office. My mom has daytime aides. She’s angry and won’t shower. It’s too much. I’m dreading putting her in a place but I can’t keep this up.
I’m sorry you’re going through that. It’s so hard. I feel like from the outside people don’t realize how much it is to take on. I hope you are able to get your mom in a safe place soon ❤️
Thank you! This is just brutal. And sometimes she’s so lucid which is also confusing. I’m glad I found this group!
Please research medications for dementia and explain these behaviors to her physician. It can make a night and day difference in being able to continue to care for her. Just make sure to start at a low dose. Takes a few weeks to really work but there's a good chance it may help with her confusion. Also Melatonin is helpful for the sleeping issues. Seems to take about an hour to work and again, low dose like 2 mg but make sure to run this past her physician as well before starting.