My siblings and I are caregivers for parents. They live independently and we take them to dr. appts., grocery shopping, etc. Both parents showing signs of dementia, Poppy more than Mom. Mom is forgetful, but Poppy sometimes can't express himself coherently, and is better some days than others.

Poppy fell (again) the other day but this time, he couldn't get up. Went to ER and nothing broken. Sent home. He can't walk, so we got a hospital bed for him. He keeps wanting to get out of the bed and keeps falling because he has no strength. I don't think he will walk again after this, he is so weak. He is refusing any assistance, and won't go to his doctor for this fall.

I guess we are entering a new phase of caregiving. They won't be able to live independently anymore. Any guidance on whether Poppy should go to an assisted living facility, or else have someone come and live with them to care for him? Maybe what the pros and cons are, or how one makes the decision to do one or the other. Oh, and Mom is overwhelmed and stressed out and just wants him to go to a home.

This is where the medical and legal stuff converges, so any advice re: this aspect (medical and legal) would be welcome as well. We are trying to get POA signed, but no luck yet.

Thanks for any help you can give. Suddenly we have all these decisions to make and we don't know what to do.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Cheryl123 - at some point soon (like now) dad still gets to have opinions, but that doesn't mean you have to honor it when it will not be good for him.

My mother was so full of "I"ll never" and "you won't" and "no no no". It would have been easy for me to say she wouldn't let me help her and just let the situation go.

You guys have already started down this road and doing the right things, so pat yourselves on the back for that. It's a huge accomplishment. H U G E.

When our parents get to a certain point of physical and/or mental frailty, we have to take over. Nobody prepares us or them for it, which is a huge disservice. Nobody wants thier life taken over, but there comes a time when it will happen by people you love or by people the court orders. I'm trying to get myself used to the idea of that. There will come a day when my opinion about my own life doesn't really count anymore, and that is for the best. Seems harsh, but it's true.

Keep fighting the good fight!
Helpful Answer (1)

You are in our thoughts and prayers. Please share when you need us
Helpful Answer (1)

Just wanted to update on what happened. Suddenly the POA and Poppy's rights seemed to have become a non-issue. My sister and brother went to hospital yesterday while dr. told Poppy his diagnosis etc.: inoperable lung cancer. I was told that Poppy didn't believe it (typical for his personality even before dementia).

It was agreed that he would get the best care in a residential board and care facility which the patient of course has to pay for. It is 3500/month, and he can afford it, so we're grateful for that. He was so mean before he got admitted to ER, but he was so sick, it's no wonder. I went to see him yesterday and he was alert and so very nice. My mom was afraid to see him because he was so mean to her, she didn't know how he would react if he saw her. So I went myself.
I told him Mommy is afraid to see you because she thinks you're still mad at her. And he said, no I couldn't be mad at somebody that I've loved for so many years. Wow. That's really unusual for my stoic Poppy to even express that much emotion.
I went back and got Mommy and took her there because in case something happened, I just didn't want her last memory of him to be a bad one. When we got there, he was sleeping so I woke him up, and we had a short conversation but he was very drowsy. But at least Mommy saw him and she said I love you and he said I love you back.
I've been crying so much, I think partly from stress relief and partly from sadness.
I just wanted to thank you all for your responses and hugs. So much support here, and encouragement, and sooooo helpful, I can't tell you how glad I am to have found this place. Hugs to you all!
Helpful Answer (1)

Well, the thing is, Poppy is still competent enough to make his own decisions, yet dementia'd enough to make bad ones about his care. He still wants to get up and walk, for example. If he's in the hospital, he just wants to go home and tries to take all his tubes and things off. So we are in limbo here, and Poppy still retains all his legal rights as a competent person.
Refusing to take him back was a suggestion, but I believe another poster earlier said if we do that, he will end up in the first available opening somewhere, and it could be a bad place. That's something we're not willing to do to my pop. And I did say that to both the admitting doc and the case manager that he can't come back home because my mom can't handle it, etc., but I was basically just trying to get them to keep him a little longer, I guess, or make them try harder to spin it to pop that he needs to go to rehab.
I know my pop will NOT agree to rehab, and we still have to respect his rights. My brother has the best communication with him, so he is going to be there when doctor tells him tomorrow what his options are. My sister thinks poppy won't even agree to hospice. She can just imagine him saying he wants to go home and doesn't want anyone touching him. Again, he is not making good decisions but he still gets to make them. That's why I had my little breakdown the other day. It's so frustrating and stressful.
Helpful Answer (1)

Veronica has nailed it. You don't any of you accept discharge. If they threaten to put him in a cab home, you tell them that mom has been admitted to a different hospital for dementia and exhaustion and that there is no one at home to care for him.

Your boyfriend paid for Hospice? That sounds extremely odd.

The way we siblings keep in touch about was is going on is group emails via smart phone . Whenever we visit, get a phone call talk to a doc, we email all the sis and in laws. Have started including the eldest grandchildren as well, so they get to see how it's done.

Cheryl, I didn't understand the difference between Medicare and Medicaid 2 years ago! Don't feel bad. Everything I know about this stuff I've learned right here. Plus, watching cousins care for their parents sometimes well, sometimes badly.

In part, getting your father to agree to rehab is in how you pitch it. Give choices (rehab now with the possibility of returning home when he's stronger, or nh "because mom's not up to taking care of you right, poppy. You've got bedsores. APS can come in and say that mom isn't giving you enough care. You don't want to get the government involved, do you?"
Helpful Answer (1)

You do have the option of refusing to take him home. Subjecting him to chemo would only make the final months of his life miserable. A good first step would be the dr ordering rehab. He may agree to that on the idea of P/T to get him walking again. medicare will pay as indicated then Mom will have to pay for N/H till she reaches the amount of funds Medicare specifies. He may be able to recieve hospice in the N/H but he can refuse. it is good the whole family is involved that rarely happens. Eldest son should get the POA if everyone agrees. Hospice will want DNA but that is not mandatory. If hospice has a inpatient facility there maybe payment required everything is income related. choose your facility carefully and visit at different times of the day. If you have money to pay for at least six months beds will be available and you have a much better choice. if he is heavy and difficulty you may need more than one caregiver to turn him and mother should not have to provide any care except maybe feeding him. Let her feel involved but not hands on.
She can feltch the sheets for example and put the towels to warm. hve her in a room where she can't hear what is going on at night. He may get very loud. Hospice would be a good idea when and if his lungs get painful.
Helpful Answer (0)

Ohhh, okay. Well, I don't know why my boyfriend had to pay for his mom's hospice then.
That is the family consensus too, the nursing home for exactly what you said: bedsores, and Mommy's well being. But it still always comes back to what he wants, right?!?! Because he still has capacity. And I don't think he would choose chemo or biopsy route.

Re: discharge planning dept, well, we still have not seen a social worker since by the time he got admitted they were gone for the day, but a case manager spoke to me for a bit on Friday and said the social worker would be in on Saturday. But later someone else told me social worker is NOT in on Saturday. Yesterday, my sister and brother talked to someone but I don't know who.

You know, It's really good to have four kids who can divide up duties and not have Mommy worry about anything, but then none of us really knows all the details of what the other has done. How do you people do it just on your own?! This is way too much for one person to handle.

And yes, the poa for Mommy is high priority!! My sister might have even gotten it signed by now. I know she talked to her about it.

Thank you for the clarification, babalou! I am embarrassed to say I don't even know the difference between Medicaid and Medicare.
Helpful Answer (1)

They have too much money for MEDICAID, not Medicare. If you're a retired working person, you generally are automatically covered by Medicare. Hospice is covered by Medicare.

Chemo? Who is going to drive him back and forth to chemo is something to think about.

Hospice covers comfort care. You should have hospice evaluate while he is in the hospital and give their opinion.

is the discharge planning dept working with you?

how about he goes to rehab in a nursing home for a few weeks? Medicare will generally cover 20 days fully after a hospitalization of three dsys, then another 80 days where he pays 20%. They could start his bedsore healing, get him stable and maybe even start chemo there. You can evaluate from there whether it's wise to bring him home. Make sure he gets that NH is a temporary step.

my two main concerns here are that your father not be in pain and that your mother's health not be compromised by the stress of having dad at home. If you decided ultimately to bring him hone, they clearly need 24/7 care at this point.

is your mom competent to give you poa for her care.
Helpful Answer (0)

Thank you, glad. I think Poppy still gets to decide on his own care, so that's why we are planning for him coming back home. And then we don't know if the hospice will also take care of his bedsores, or is that a separate thing or what. It's all so confusing. I don't know if we have time to see an atty. I'm thinking they're going to discharge him by Monday if he doesn't want to treat the cancer, because they've given us time as a family to consult and make decision.
Helpful Answer (0)

See an elder law attorney well versed in Medicaid planning and Medicare benefits for hospice.
Helpful Answer (0)

Cheryl, get him in hospice. If your Mom was overwhelmed before she certainly will become more so. If they have too much money for Medicaid, they must have funds to pay beyond 100 days. Or if not, Medicaid will kick in when funds are depleted to a certain point in order for your Mom to have the funds she will need. Medicare, as far as I know is not income restricted, and should pay for hospice care if Dad's doc says he has less than six months to live.
Helpful Answer (0)

joannes, well, I sure understand the need to vent with what you're going through. I think your daughters' idea is a good one, and I hope you can get some stress relief.

Babalou, things have been changing so quickly. Dr. called yesterday. Poppy has pneumonia and a mass on lung which is probably cancer, but discouraged biopsy on such an old person because of its own complications, and he's not a candidate for surgery with all of his other health problems. So he was saying treating the cancer with chemo is an option, I guess. He said he has months to live.
Next option is nursing home for a limited time, which I means Medicare or insurance pays for and then you must pay after that period is over. Am I understanding that right?
The last option is hospice which Medicare pays for. But my boyfriend said he probably wouldn't qualify for Medicare because he has too much money. So do we need to start looking for a hospice care service? I think they will keep him in hospital for one more day while we decide. If/when we bring him home, I think he will have to have 24/7 care for his bedsores because he has to be turned every 2 hours. I am sure he would want to be home instead of in a hospice facility.
Any advice about this new development?
Helpful Answer (0)

If you want to get a handle on his dementia, you take him for a neuropsych work up, but you need to get POA first.! Because if he's still doing okay on the mini mental, he would probably be found competent to sign a poa at a lawyer's office. Not that this gives you the right to tell him where to live.

Ask discharge planning if they are certifying him as safe to be discharged to go home alone, because your mom has dementia and can no longer care for him.what do THEY suggest as the level of care he needs to be safe? Have the doctor write an order for home care, visiting nurse, bath aide, in home pt. When dad complains about it, say, "the doctor's say you have to have this or you have to go to assisted living"

Take your parents on some AL tours in the coming weeks. Have them think about the coming winter months if you live someplace with bad weather. Sometimes you can convince them to go for a month's trial, and they like it!
Helpful Answer (0)

cheryl123, be sure you keep coming back and sharing with this group what is going on and what the struggles are, no matter which ideas you all implement because there are so many good people on here, someone or MORE, will have done what you are struggling with and have ideas. Because my caregiving is more like paying bills, handling financial stuff and then 'coordinating' care, plus being the only 'support' my Mom has, due to her own issues.....I, too, find it unbelievable what some of the caregivers on this site are dealing with! I am a retired nurse, and I know that I could not do the home care stuff. The person above, who made it clear what the care requirements will become is REALLY telling it like it is! 24 hours/day, 7 days a week. NOT a shift, as it was when I was working as an RN...or like the caregivers in a facility do it. I think about how I have to be at Mom's beck and call by turning on her furnace...who to call? What will it cost? argue about the money. Find a yard person to take care of the weeds and mow the grass, do some sm. home repairs. She would not know how to change batteries in a clock herself, so it's every little thing that happens in a house. She doesn't have the strength, at 89 to change a light bulb in the porch light and shouldn't climb anyhow. So she calls me about it all...and I have to find someone to do it, since I don't live in the same town. Now, mind you, she will grab a chair and climb on it to get ice out of the freezer for her bourbon, even with severe osteoporosis and a repaired fractured hip....but certainly NOT a light bulb! Anyhow....all that comes to me. IF she leaves to come up here for a long weekend, I get to stop the mail and the paper and tell all the neighbors and Dad's facility etc that she's going away, and then I get to pack and unpack the car with all her all mine too since I have to drive 5 hrs to get her and then take her home. I have to send the fax before each MD apt and track all that. And now that Christmas is coming, she is again this year, suggesting that we need to bring Dad out and have him with us for Christmas!! Is she NUTS? He will be confused, disoriented, incontinent and agitated. He won't know what to do or how to even find a bathroom or the bedroom, so he, alone, would be 24/7 care. And even though she is physically self care...mentally she is like a child or puppy dog, following me every where and asking me to help her with everything assistance with cooking or cleaning or anything. AND there is a husband and an elderly dog on pain meds and special food. IS SHE NUTS??? YEAH....she is! Dad is her husband, but she would not be able to lift one finger to help him herself. She just orders or suggests what other people should be doing for him! So I tell her NO...that won't work....and she's upset because he will be all alone at Christmas. Last Christmas, I gave up the time with my husband and went down there to spend Christmas with the two of them at his facility.....she still wasn't happy...and he didn't know the difference of one day to another...and hubby certainly was not happy about it either. I felt it was a totally 'working' holiday for me. So, physical caregiving is way more than what I do....and I regularly lose it myself. My daughters had an 'intervention' with me this week, on a phone conference to convince me it was time for Mom to have a caregiver coming each afternoon, just to keep ME sane and alive for the rest of my family!! Anyhow...a bit of advice and bit of venting due to the week I've had this week! Thank you all for listening!
Helpful Answer (0)

I don't know how you guys do it. It's only been nine days since all this started, and I've had my first breakdown and I'm feeling drained and trapped and resentful of Poppy. He is nasty to the "women" in his life, who he accuses of conspiring against him and telling the doctors things to make him go to the hospital when he just wants to get up and walk.

We took him to his primary care dr. today. I had the report from the GCM and was sure when he saw everything wrong with Poppy, he would admit him. Well, in the waiting room before he saw the dr.,, he slipped down from his wheelchair and fell to the floor. It is protocol to call the paramedics, so they came over, and his BP was really low so they took him to ER. I thought, great, this is a blessing in disguise. Now they'll see all his problems and admit him.

Well, they did admit him for renal failure, of all things. He's barely eaten for the past two days. His BP is higher lying down than it is sitting up. No wonder he can't stand up and is dizzy all the time.

The admitting doctor starts tellling Poppy he is going to stay in the hospital and Pop's immediately trying to refuse and get out of it. Doctor tells him he has to stay and if he's stable he can be discharged tomorrow. I take doctor aside and tell him all that's going on at home and why Pop can't come home, with his dementia and falling all the time, etc. I say he can't come home, we are not equipped to take care of him. The doctor says they are not the police and if he wants to go, they have to let him go.

I spoke to case manager and told her the same thing, and she said he could be transferred to a nursing home, but if he is getting out of bed all the time, they will put him in a locked ward. They could transfer him to a rehab for the short term, but the social worker will be there tomorrow and they can tell me more about it.

I talked to our geriatric case manager, and she said if they want to discharge him, make them show you documentation re: why his BP is so low, and why he can't stand up without falling down. So I guess kind of as a stall tactic, more than anything else.

I asked her about the results of the mini mental status exam she performed on him, and it was actually pretty good, like no real dementia going on, and because he has a possible UTI, that could be the cause for some recent agitation and confusion and some things he missed on the mini. Then she kind of ran out of ideas and suggested trying to talk him into assisted living or something. Yeah, right. That is not going to happen.

So it still seems like it comes down to, if he doesn't want to go anywhere for treatment, there's nothing we can do about it. I didn't have the heart to tell my mother that tonite. They have the money to pay for round-the-clock care, so I guess that's what they'll have to do. I know he has dementia but I apparently it isn't that bad. It's just that he will not help himself by always trying to walk when he can't, and making things worse.

And I don't even have it as bad as what some of you are going through. Really, I don't know how you do it.
Helpful Answer (1)

If you father goes into acute care, they will assist you in getting him placed!!!
Helpful Answer (1)

I would put dad into accute care - under the guise of healing his bed sores - and buy yourselves some time to make decisions. Then he can be in a place where professionals can turn him and dress the sores. They can put him on an air bed that circulates air under him, so he has no pressure spots. This is not a bed your sister would have in her house.

I think the GCM wants to delay a neuro consult until AFTER the POA is done. A POA would be invalid if the person is incompetent when they sign it. A neuro consult needs to happen, but things need to occur in the right order. OTHERWISE, there is a different process. You're not up a creek.

If a doctor declares him incompetent, then you go before a judge to recieve guardianship. It's a longer more complicated pathway, but it is possible.

TAKE WITH YOU TO THE GP: A list of symptoms you are worried about. If they don't hand you a form with a bunch of boxes to tick off for this, then you can bring it yourself.

E.g., Inability to comply with directions, anxiety, physical agitation, disrupted sleep, periodic inability to verbalize, incontinence started about X month of X year, confusion, paranoia, delusions, etc. Whatever it might be.

As far as home care, it's a fine idea when there's the possibility of recovery and return to normal. E.g. after a heart attack. With dementia, things can rapidly deteriorate literally over night into a situation a home is not equipped to handle.

It becomes extremely expensive to convert a home into a dementia-proof facility. And then you've lost your home. There isn't anywhere to go for your own rest & respite. If there's a dementia patient there, nobody will be getting anything remotely like rest. The entire household is affected and the patient becomes the center of the universe.

For me, I was not willing to do that to myself, my husband, or my kids. Our home is our sanctuary. If it were possible to do caregive without any kind of break from it, why do facilities run shifts? Even the professionals know to get away from it after a certain number of hours on duty. If it's in your home, there is no getting away, not even to pee.

My mother lived with us for a while, and it got to the point where she would go into hysterics if I were not in her line of sight. I literally could not go pee without her losing it. Even if I told her I went to pee, I'm still here, you're not alone. She would not let me or anyone else organize her meds. It was a destructive nightmare. My guest bedroom STILL has a weird smell in there we can't get rid of.

The choice comes down to the fact the person is going to live in a dementia care unit one way or another. Is that unit going to be in a place purpose built for it already or are you going to convert your home into a dementia care ward and expect everybody else to live that lifestyle?

The care needs starts out as a heavy burden and goes up, up , up. Many people come to this site in real crisis after deciding to take this on, and it turning into something they never expected in a million years. Go in with eyes open.

Make sure your sister knows that to care for dad at home will mean she has to effectively convert the house in many ways and be willing to live the dementia lifestyle 24/7/365 herself. Is she going to do that with mom too?

It is NO picnic. If a facility requires a cooking crew, a cleaning crew, a nursing staff, attendants, orderlies, activity director, care coordinators, and safety resources, why would someone think they can take all that on as one person?

The wear & tear on a home is enormous. Carpet cleaning & replacement, enormous laundry loads, etc.

Home care is an idea a lot of people are in love with because it sounds loving and caring, but the reality is more often something else completely.
Helpful Answer (1)

Okay, that is a great way to say it, if he thinks Poppy is competent to make his own medical decisions. RIght now we're just focused on the medical POA. The GCM called yesterday and went over some things that I should tell the dr. Of course I will bring her report, but she wanted me to ask if he could be admitted to an acute care facilty because of bedsore and a weird sore on his leg, as well as his BP and his dizziness. Also to mention my mom being overwhelmed at everything that's gone on and she's too old to handle this; she's got signs of dementia herself. I asked if I should ask for a neuro consult, and she said, you don't want to ask for too much at once, or it will have the opposite effect or something like that. So I feel like I have to say things the right way to get the right result, and in only a few minutes. I'm nervous about it. She also said she could assist with getting the POA signed, because she seemed to connect well with him, so I'm hoping that will work.
So I'm thinking of giving the report to the receptionist at check-in and telling her it's important that I speak to dr. before he sees my father, and then just telling him the key points because he'll already have the report. It's hard to distill everything into two or three clinical sentences when you're so emotionally involved and so much has happened in the last week and a half.
Helpful Answer (2)

For me, the decision to stay at home or not was based on safety. My Dad started to get too agitated and was taking it out on MOM who was home alone with him. we tried caretakers, but for at least half of every 24 hours, she was alone with him. When he threw a liquor bottle, half full, at her, but missed, and it was observed by my daughter, that was it. We called the cops for a welfare check. We were looking at facilities and he was taken away for a 72 hour eval and we had to find a place. Judge then said it wasn't safe for him to return home. Mom, of course, blamed it all on us and to this day....2 years later...he was 'taken away from her' and if he had stayed with her, he would be better she thinks! It's her own dementia. BUT....we HAD the POA. You cannot make any decisions that he refuses, without that POA or guardianship over him. Your GCM should be able to help get one of those started and recommend how to proceed. Two doctors will have to declare he is incompetent to manage his own affairs. Now, you could also just get the medical POA, which does allow you to make medical decisions and leaves him able to make other decisions, but if someone besides his wife is paying all the bills sounds like they need either POA or guardianship completed. You need to ask the next doctor you are seeing to assess if he/she believes your Dad is competent to make all his own decisions about his health, well being and finances...or should someone else be 'in charge' at this point with all that's happening. Sounds like the GCM is recommending some help in the home, so who is going to pay for that? If no POA, Dad or Mom can refuse to have their money used for that, and it would leave family with the bills. But when you are faced with an every two hour turning, and, keeping him in the new position....even if he doesn't want to....that means you need helpers. The GCM says skilled nursing coming to the that means trained certified aides who do skin care, bathing, monitoring his intake, output and that an RN periodically comes also to check how things are going. That means a home health agency. Now a doctor can order, and perhaps Medicare will pay for a limited amount of time? Do not know for sure. Is Dad a veteran? Maybe eligible for VA Aid and Assistance will pays for both in home and in facility care, but it takes a while to go through the application process. Would they be Medicaid eligible? That means, in cash assets beyond $2000/month and only owning one house and one car. A long application process as well. We had an eldercare attorney and their office staff to help me go through that process and it still took almost a year to get it done. In the meantime, we spent over $75000 for Dad's care and some allowable 'spend downs' on Mom's house improvements/maintanance and her medical needs. Dad should have been approved for VA, but the waiting list was too long and we were running out of money so we went for Medicaid in the end. It's all complicated and stressful, no matter what!
Helpful Answer (1)

I have more questions! Was wondering if someone can help me through this stage of the process.

The GCM came out yesterday and will have her report by tomorrow. I wasn't there, but she told my sister Poppy's getting bedsores and needs to be turned every 2 hours, has a weird sore on his leg, among other things. Did a mini mental status exam on him. Recommended skilled nursing coming in to the home. I don't know what all else, but sis was pretty overwhelmed after hearing it all. We were thinking it would be better for everyone if he did go to some kind of facility. When my mom told me he kicked her yesterday, that was not a good thing. Plus he keeps trying to get out of bed, and if he needs round the clock care, we think it would be better to be in a facility.
So the plan is to make an appt. with his primary care for Friday. And then what? I remember now my sister said when he was taken to ER, they said if no POA, they can't keep him.

So we still don't have POA. We will have the GCM's report of his condition to take to the dr., but I don't know what it says yet. I am going to call GCM today and probably ask her the same things, but I've been learning so much from you all, I thought I would post this while I'm waiting for a decent time to call.

So if he needs nursing care and we have no POA, does that mean we can't take him anywhere because he will refuse?
What should we tell or ask the doctor that we want/need?

I'm too close to the situation right now to be concise and clear, and you know how doctors appts are always time sensitive. And since he didn't break anything, I don't know if his provider will provide any sort of care or anything, because now it is just old age stuff that is on us, right?
Helpful Answer (1)

Thanks for the explanation of all the different places, san. That's a wonderful suggestion to look for a place that provides different levels of care so you don't have to go through the process multiple times. HAHAHA re: your boxes joke!

So can i ask everyone, what did you base your decision on to put your loved one in a facility? My sister wants to keep Poppy at home, if possible, and I did too at first, but now I'm starting to wonder, as I learn more about dementia.

He wanted to get out of bed this morning and Mom was trying to keep him in, and she said he "kind of" kicked her in the stomach! This is the first time I've heard of him getting physical over the past week. He's been very nasty verbally to her but she knows it's his dementia and says it doesn't hurt her feelings. She is living 24/7 with him and coping pretty well, but it's obviously harder on her than the rest of us who get to go back to our homes at the end of the day.
Helpful Answer (2)

Taking action does feel good! Contact your local area agency on aging for help finding an attorney and a facility. They typically have all kinds of information with definitions and contact numbers you will want to get.

When looking for a placement for dad, you want to put him somewhere that can expand services as his need level increases. If he only needs X for skilled nursing today, and the place doesn't provide X + Y, that would be a strike against that spot in my book.

Not every area has continuum care facilities, but if you can find one, look into it seriously. Those facilities can handle many different levels of care. The one my mom is in goes from independent apartments all the way to hospice. I joke that you go in one end with your boxes and come out the other end in one. They have everything in between.

One question to ask is "what do you guys NOT provide?". or "when do you transition residents to the next level of care and is that care provided here?"
"What assistance do you provide in finding the next level of care when the need arises?" "What would I have to bring in an outside agency to take care of?"

Just an example of the care levels we use in my area -

Independent Living means the person may still drive their own car, but wants to live in a senior only environment. They may or may not require any help. These folks could come & go as they pleased, just like in a regular apartment complex, but they had the common dining room available for 20 meals a month, shuttle buses, activities & field trips you would not get at a normal apartment complex. They also had to call the "I'm OK" line by 10:00 every morning.

IL with services means the person has someone come setup their medication box for the week, or gets med reminders, and the like. Very lightweight care. Administration of meds is where it gets muddy between what a personal care aid can do vs. a skilled nurse. Aids can hand pills to the person and watch them take it but not do insulin injections for example. This definition is different in every state and even across facilities. You have to ask and never assume.

Assisted Living is where the person needs help transfering, dressing, bathing, other activities of daily living (ADLs). There's probably medication administration. But where mom is, the AL unit folks still came down to the same dining room as the IL group and joined those activities. There was another AL unit that had its own small dining room for the folks who were not able to get to the big dining room and who needed more help to start eating. These folks did not need 24/7 supervision and monitoring but did need help with bathing, dressing, transferring.

The Care Center is what they call the nursing home unit now. This is the unit for folks who need 24/7 monitoring, skilled nursing services and assistance with most ADLs. There is a higher nurse to patient ratio. There were people in this unit who were just really old, people with dementia, people with every kind of elderly affliction there is that requires skilled nursing services and 24/7 supervision. It's a lot more hospital-like than the AL unit.

The Memory Care Unit is locked and where the dementia patients with behavioral/psychiatric problems are. This unit holds the wanderers as well. This unit is pretty specialized to deal with people who have all kinds of behaviors that would keep them from being in another group setting and for the folks who need a lot of help with everything.

Hospice & Palliative Care unit is for people who may be transitioning to their final stage.

There's also a TCU/Rehab unit in the building for people who have had some kind of major surgery and need to recover for a long period and will then go back home. There's people of all ages in that unit.

Some areas have these levels across different facilities and when you need to change, you have to go find a spot in a new place and move there.
Helpful Answer (1)

sandwich, you bet I will be coming back, and often, to get advice. This is only the beginning of a long journey.

joannes, love your avatar...your pop is so cute. I am learning that communicating differently is key. I'm glad to know the "either this or that method" of letting them choose is effective. I'm going to remember that. I wish we could do the same thing you did with the attorney who drew up your trust. My parents' was done so long ago, I don't even think the attorney is still around but could try to find out.

Today I called an elder law atty who blew me off with some stupid response, so now will have to find another one. We have home aides coming out tomorrow for bath and hygiene stuff, and a geriatric case manager who is going to do an assesment and report. I hope she will be a good resource. I didn't have time to really shop around. You've gotta start somewhere, and whether it be right or wrong, just taking action makes me feel better.

It sounds like most people have generally had good experiences with assisted living/nursing home/whatever else. (I'm still learning the terminology and the difference between all these places!) That's really good to know. We'd like to keep mom and poppy at home if we could, but I guess there will come a time when it would probably make more sense to move them into a place.
Thank you thank you thank you all!
Helpful Answer (3)

I think all of us come to this through the crisis door. If it weren't for this website, I don't know where I or my mom would be right now. This site taught me everything I needed to know and do. I really appreciated the plain spoken direct folks on here who will say it the way it is versus being overly polite and indirect. I needed "Do this, don't do that".

When you get the right doctors involved, you & your siblings aren't making dad do anything. The doctors are. They do the tests that give the results and recommendations. It's not the family ganging up on him. Some folks take news better from an authority figure than from their grown kids. Even when the grown kids are 65+.

Moving my mom into a senior independent & assisted living apartment one year ago may have saved her life. She was actually much farther gone than any of us realized and should have been in the assisted living unit 10 years ago or more. She was only in the apartment for 6 months before more drastic changes happened that put her over in the nursing home unit of the same place. 4 months later and she had to go into the locked memory care unit. I am lucky to have a place where all of these care levels are under one roof. It's a big campus.

She and her sisters were not ready to accept reality, which prevented her from making life changes when they probably would have mattered. This has accellerated her decline, but I can't change the past. Mom & her sisters are exceptionally stubborn and one of their super powers is denial. Having this group stand around and pretend it's not happening did nothing to help mom out.

Being in the senior residence and nursing home unit probably saved mom's life. If she had been allowed to continue doing what she wanted, she would likely be dead right now from a fall, diabetic coma, malnutrition, overdosing, or another stroke. Pick one or pick three for a combo platter. She has had several very serious medical incidents this past year that would have had a very sad outcome had she not been in a place where there were competent medical professionals around her at all times.

That peace of mind is worth every penny it costs her to stay there. She is in an environment structured to meet her every need. There are no stairs, her food is prepared fresh at each meal and served to her. She is washed, her depends undergarments changed, and dressed every day by trained people. She is put into activities structured for people at her level.

I have been able to move out of caregiver, stop the obsessive worry, and go back into the role of daughter who visits. She resented me as caregiver. She fought getting care. Now, it's not me telling her to eat and it's not me making her take her meds. It's the people in charge. The doctor comes to them in the unit, so I don't have to take her out in the winter weather to appointments. If a med change is needed ASAP, the charge nurse just calls for the doctor to OK it and it's made up right there. They have a PT gym on site. There's a dentist on site. There's a barber & beauty shop on site. There's church on site. Activities, pet visits, musicians, you name it.

They do so much more than I could in my home or that mom could get in her home community.

Everybody wants to hang onto the "way it's always been" long beyond when it stopped being that way. Dad probably thinks he's independent in his own house when he really is not. If he can't walk, he's not independent. If he's having incontinence issues and requires assistance to change, he's not independent. If he needs his food prepped and brought to him, he's not independent. Independence is an illusion. If mom & dad don't know to call 911 when he falls, that is a sign there is a cognitive problem. When the frail fall, they can have damage that isn't visible on the outside. I would be worried sick about that. Falls can come from mini-strokes, dementia progression, and a host of other medical problems not obvious to the untrained.

No, a nursing home type facility is not where the able bodied & able minded want to live. Yes, we would be miserable there, but it isn't for us.

I realized that I can't quit my life to care for my mom, and I am also the last person on earth she wants to have caring for her, so the place I was able to get mom placed was a real God-send. She hates it because they make her get up, clean up, get dressed, and come out to eat in the common area. They put her at the table for activities and she hates it, but it's good for her. Sitting alone in the dark, sleeping all day, being up all night, and not getting her meds was not healthy. They don't let her be that way.

She's had the best medical care ever in her 77 years at this place, but won't ever appreciate it.

This kind of crisis is hard on everyone, so I'm sending you all the good vibes possible. Come back to ask any & every question. There are some amazing people on this board who helped me & I know they will help you too.
Helpful Answer (2)

Cheryl123...I can try to give some ideas, but I have to start with my situation. I live 5 hrs from my parents. I am a retired RN, so understand how the systems work a little better. My support is also an RN and the other has a Masters in they can 'see' what I don't too.... My parents had a living trust already because my Dad knew for 8-10 years before he got bad that he had dementia and was on meds and in care of a neurologist. He knew my Mom would not be able to function well on her own and make decisions because she never had been able to, and he was the one who paid all bills and handled financial decisions etc. Part of a living trust is getting the POA and Medical POA forms all put together and discussing who should be responsible for what if you cannot do it yourself anymore.... SO, when we discovered Dad was not paying bills right or handling money right, we tried to have a meeting and talk about what to do.... What is typical, no matter all the pre planning, is for the elderly person to insist there is no problem and they are just fine....leave them alone and they do not plan to go anywhere. Exactly how my parents responded. SO....I called the attorney and explained what I thought was going on. He said he would be the 'bad guy' and get things he was very clever....he called Dad and said it was time to come in and go over the trust due to changes in the law. Dad and Mom willingly went in. He asked some key questions and led them to the probable need to sign the POA and Medical papers because both were 'getting older' and Dad admitted he 'was a little worse'. Attorney explained that the papers have to be signed while someone is still competent enough to know what they are signing...and that POA only means that they have help in areas where they need it, not that they are turning all decision making over at the moment of he knew how to 'sell' it to them both. Now, later, when I started paying bills and it got to where I thought Dad needed help at home, he wanted to undo the whole thing and fire the attorney etc. Again, attorney was the bad guy....he called them in....without me....and he basically said that if Dad wanted to un do the paperwork, then lawyer would have to contact two MDs and get a statement that said Dad was perfectly competent to take on the bills etc. Just made it seem like that was the 'law' once the paper was signed. So Dad readily agreed and we all knew the two doctors would say he was NOT able. Dad pouted a little when he got that notice, and threatened to fire the attorney and get another. Attorney said that any attorney who listened to him for 10 minutes would understand he had dementia and would refuse somehow to take him on. But Dad blustered and did nothing about it. I got help in the home by pointing out that police had been called to evaluate the two of them twice...and that if Adult Protective Services were called by police, the APS would decide who could stay home and who had to leave, and what the care would be and where, and all control would be taken away from family...(not necessarily so...but white lies help!) but that lawyer had said if we had a home care agency involved and someone coming to the home for a minimum am't of time, that would prove that we had caseworkers and support and a plan so APS would leave us alone. Dad agreed to a helper, for a trial of 30 days. Of course, his dementia was such that he never remembered about the deadline and he ended up liking the person who was coming and she stayed with them for a year....six months after Dad was placed. As for his doctors....I would FAX the doctors what I thought needed to be looked into or assessed about them a couple days before the app't. I would tell my parents (and still do this with Mom) that I was sending a fax, so that all THEIR questions would get written down and not forgotten. So parents concerns were in the fax and my concerns too....but I would say..."Don't tell them about this or that....just assess them around those issues.. and don't give them the fax..." It works great. Of course, one must have the medical POA to insist on making decisions....but without that, the doctors can listen to anything you say....they just cannot share medical with you OR have YOU make the decisions. Doctors know how to lead the patients to the right decisions though, just like the attorney does. your case, if you do not already have an eldercare attorney or trust or will etc....suggest that it should be looked into and offer to help them in order to prevent major financial issues later on. With the doctor, perhaps fax as I do with your concerns, then set the app't and then just tell dad that office called to say it was time for him to have a 'check up' or a 'medication review' or something that would fit his situation....just to get him there. Use the...." Oh Dad, I'll take you and then we'll have lunch or whatever thing might be a positive for him....." I also want to say, that with his issues being relative to him not realizing his own limitations or not accepting them...another recourse is call 9-1-1 when he's down or call and ask for a 'welfare check' of the police. The police will never tell them who called....just that they received a call. I actually made all the welfare check calls on my parents, from 5 hours away...but let them THINK the neighbors must have called. My Dad was agitated...drinking too much alcohol to self medicate and then fighting and yelling at Mom about all kinds of things....and it was neighbors actually DID hear some of it, but they never called. When I visited, I went to the neighbors next door, behind them and across the street, that knew them, and said that Dad's dementia was getting worse, and I ws worried about them and gave my permission to call me or call police to check on them. They all still help with Mom who is now home alone. They have access to a key box on her door, so they could get into her house if I needed them to check on her or be with her until I could get there. RE: ED visits....I was there a couple times with my Dad...and the staff were willing to get my input and then compare that to what he said...but I already had the POA so they accepted me as the authority figure. And my Dad, with his severe dementia, still knows his name, recognizes family most of the time and lots of the time, knows who the President it even..does not know the date or time or year anymore, but he can 'charm his way out of that' by joking about how it's really not important and such. They really learn how to be social and appear OK.....when they are not. There are days when friends can visit Dad and if you didn't know, he appears to socialize and know who they are and talk about things, but after they leave, he has no idea who they were. He was just 'going along' to be social. Sandwich42 is correct in all the comments about what it is going to be now with dementia. It's not about what they want. It's all about what is SAFE for them. And you have to be able to move away from being the obeying daughter who wants to please the parents, to being the 'parent' in the situation. I find, with my Dad, it's worked well to remind him that 'this is what your doctor wants you to do'. DRs are authority figures as are lawyers....and they carry way more weight than daughters and sons!! Dad cannot remember what the doctor wanted him to do, and I can always say, "Yes, I was there with you and I remember he said that...." and Dad will say....OH....ok....well, you know, my memory is NOT what it used to be..." and he'll cooperate. Mom is different....more contrary and wanting to fight all ideas and decisions while she comes up with hers, which make NO sense and have no sense of safety awareness in SHE might be more like your Dad. I am taking more control with her, and saying things have two stay home in your house with this or that support, or we consider Assisted Living. You decide to only drive to see Dad and in your neighborhood, or it's time to take an official driving evaluation.... You either take the medicine today or we go to the doctor and talk about why you don't want to take it.... She wants multiple opinions besides mine, so sometimes I have to get with others and tell them what I am trying to accomplish and that I need them to match up with my thinking when she contacts them for their opinions. I do that with doctors, caseworkers, friends, neighbors and family....but then, I have the POA already. I CAN tell her she has to do this or that, but I would rather lead her to be involved in the decision because there is less acting out if it's her decision, so-to-speak. And, yes, everyone responding with the ED trip and you then just say, that Dad cannot safely return home....does work. It puts the placement issue into the hands of the authorities. Now if you already have a placement in mind or can run around and find a place with a bed that is OK, they will work with you....but if you are passive....they will choose the place and it may not be a nicer place. So I also say, get out there and take some tours and find out what's available in your community or theirs that is suitable and has openings. Most times, the nicer places have waiting lists and it's helpful to get Dad's name on a list at a number of places too.... If you cannot get the POA signed, you would then have to go to court to get guardianship, which is a longer and more expensive get with the attorney and doctors first. Primary care doctor could recommend a neurologist see him on consult, to do diagnosis of dementia too. To declare him incompetent at some point...or your AZ where I live, it requires TWO MDs to say they are not safe to handle their affairs on their own, so if either of them does not have two, you might get two involved NOW too. Sorry, I am too wordy all the time!
Helpful Answer (1)

We asked for a geriatric consult and a psychiatric consult a couple of years back when mom was hospitalized with high blood pressure. They were the most informative doctor conversations we've ever had.
Helpful Answer (2)

sandwich, thank you for the further explanation. I am going to forward this to the rest of the family so we can be more informed. At least now I know some things to tell/ask his primary so we can know what our options are and where we go from here. Honestly, we were so unprepared for this sudden turn of events that we're just kind of in survival mode right now, so I really appreciate the guidance.
Helpful Answer (2)

It does NOT change my answer.
My mother could fake it with anybody who didn't know how to ferret out cognitive decline. Answering your name and what year it is is NOT a cognitive evaluation. There are several out there - a mini mental or a SLUMP are two. You can NOT tapdance your way through these.

My mother is now in the severe stage of cognitive decline and can tell you her name, what grade my kids are in, and who is married to some of my husband's aunts. She still requires 24/7 supervision in a locked memory care unit.

You absolutely can NOT expect a dementia patient to be rational. The rational part of the brain is affected little by little until that capability is gone. Loss of reason looks like a person becoming grouchy, resistant, entrenched, and difficult. Loss of reason does not look like a catatonic drooling person in curled up in a chair, like TV would have us think.

If it were up to my mother, she insists she would be just fine thank you, alone in her house out in the country, eating spoiled food, taking prescriptions that expired 20 years ago, bathing in water that smells like rotten eggs.

You have to make sure the right doctors are looking at him. People educated in geriatric care and neurology of the elderly. Your run of the mill vanilla GP or family practice MD isn't going to ask the right questions or see past the surface (based on my experiences). My mother went for 15+ years with the wrong care because the stupid country GP she had didn't recognize her symptoms as dementia and gave her bad advice that probably has cost her years of good days.

Get him to a neurologist and start getting answers. This will disrupt the status quo, and everybody needs to be prepared.
Helpful Answer (3)

sandwich, I'm not sure about this, because my sister was there at the time of the ER visit, but I believe she said he was answering questions correctly for the most part, like he knew what day it was, etc., so maybe that's why they didn't keep him? Because he wasn't really confused and delusional when he went to ER.
I want to make sure you guys know that he really is pretty lucid MOST of the time afa knowing what's going on around him, but when it is about his autonomy or personal safety, he gets really resistant and that's when he starts not sounding rational.
So just checking to see if that makes a difference in your response, because I want to share this information with my siblings but I want to make sure we're on the same page.
Helpful Answer (2)

Cheryl123 - You have to outsmart dementia and not show all your cards all the time. This is no longer about what dad wants because he will not get better. Dementia gets worse. This is about keeping him safe. Staying home is NOT SAFE.

Dementia patients lose their ability to make rational decisions, so no, he's not going to volunteer to go to the doctor even if he's in pain. He's not going to volunteer to move into a nursing home or dementia care residence. It doesn't matter what he wants. You have to do the responsible thing as his daughter and as a reasonable adult aware of the situation.

If you want to take your little kid to the doctor for shots, you don't just come out and tell them "Hey, get in the car now. We're going for shots! They're going to stick a needle in your little arm and it's probably going to hurt." Sometimes the less detail shared, the more cooperation you can get.

Dad HAS to be seen by a doctor, so you HAVE to do whatever it takes to get him there. You don't have to lie, but you also don't have to paint the whole vivid picture in 12 colors for him to reject and react to. You don't need his permission to do the right thing.

Ideally, you won't sit around waiting for another fall. YOU need to call a NEUROLOIST and make him an apointment. They need to look into why he is having such drastic weakness and can't walk or talk. These are red flags you need to attend to urgently. It could be neurological or something else. This is not optional or something you can put off to the future. DO IT NOW.

In the meantime, if he falls, or if he has an episode where he can't make sense, call 911, meet them at the hospital and request a cognitive eval by the ER team if they weren't already going to do one. I should hope that this would be procedure when they get an older person who has fallen. Tell them he has been confused to the point of not being able to speak, falls repeatedly, and you have safety concerns for him, since his only full time caregiver also has dementia and is not mentally or physically able to assume the role. Tell them he won't see his regular doctor over this and can't return home because it isn't safe, and he won't cooperate with bed rest. These are all words that will mean something in the ER and ought to trip some triggers. Do not sugar coat it. Do not whitewash it so it doesn't sound so bad. Tell them you are afraid for his safety at home. DO NOT volunteer yourself or other family to be caretakers. Make it 100% crystal clear he absolutely can in no way return home.

Just because nothing is broken does NOT mean he should go home. That's ridiculous and I would not accept that from any ER doctor. Care varies from place to place, but at any of our hospitals if they got a confused delusional old person in for falling, that patient would not be walking or wheeled out the doors to just go back home with zero follow up.

The ER should definitely perform some brain scans and have a neurology consult. There will be a crisis social worker at the ER you can talk to - request that they meet with you if they don't find you first. This person is a lynch-pin in getting going down the right direction.

The social worker and a hospital discharge planning team can help find a rehab location for your dad. This will buy you a couple weeks of time to make other permanent arrangements for him. Hopefully he can go to a facility that has rehab (also called Transitional Care Units) and can just reclassify him as a resident after rehab ends, instead of making him move to another facility for admission. He might have to move into a different room, probably semi-private. This is what happened with my mom.

That trip to the hospital can make a huge difference and open doors for you, but you have to know there are doors there in the first place!
Helpful Answer (4)

This question has been closed for answers. Ask a New Question.
Subscribe to
Our Newsletter