That feeling you are betraying your parent...

Thanks bootshopgirl, I'm glad to hear that your mom resettled. As you have read I have tried to make sure I am not discounting that possibility. What made you take the leap to bring her back to her own home and what kind of assistance did you have for her? When you say mild dementia, can she look in her fridge and tell you what she needs if you ask her? I think my mom is further along than mild, other than not having coffee, she could not tell me what she would need or even what she liked.

All of these stories are good BUT...I came on screaming here a year ago with a Mom whom had fallen and broken her pelvis and back and basically went crazy from hospital psychosis in the I.C.U. and then re-hab at the nursing home. She had a detour at the geriatric psychology hospital. She came home and now 1 year later she is holding her own with her dementia in her own home. All those different places just made her crazy. Hospital delirium and a U.T.I. escalated her mild dementia BAD. I know the NH will come sooner than later for her but I'm glad I still had her house to bring her home too. Just saying what happened to my Mom. She's somewhere in the middle stages of dementia. It took a good 6 months to come out of all  that and meds for depression and depakote. Oh and Mother of Pearl! She was a Sunday School teacher for 50 years and her mouth...and she became an escape artist in NH and banged on doors all day. Mercy! What a terror every place she was in. Still have a special place in my heart for BarbBrooklyn, Countrymouse, CWillie, FrequentFlyer, MissMadge,SueC and all the rest here who got me through it!

So sorry maggiecat18. Hoping that perhaps given some time and maybe with some help from the medication she might calm down some. It is so hard. We had to move mom against her wishes (thankfully no surgery, but she did injure her leg and developed cellulitis there just before we moved her, delaying the move several days.) She would sometimes get agitated about going "home", and several times with coat and purse in hand was adamant that she was going to walk home, or to my place or her mother's. They had to calm her down and redirection worked well. Initially "home" was her last residence, but after about 9 months or so, that has become the previous residence - she hasn't mentioned either in several months. Now when I show up she'll say "Oh, where did you come from?" I have a variety of answers, some of them very silly!

Having seen many new residents (mom actually "christened" the place as she was the first to move in), usually during the day it is not too bad, but sometimes early evening can get interesting... The newest resident is kind of disruptive and swears a lot, which annoys several of the ladies. Fortunately he is not really mobile, but they will have him on the couch or in his wheelchair for a bit in the common area. I encourage the ladies to just try to tune him out and even try to find a little humor in it, to deflect the agitation. I remind them that he cannot help it right now and hopefully it will get better. This is one case where mom's hearing issues helps her! I do hope something changes for him as it is so hard to move elders with dementia as it is, and to have to move him again would be so hard on him and his family!

Fingers crossed that you get Medicaid approval, find the right place for your mom AND hopefully she settles into a good routine. Hoping you have some time to recover yourself in the meantime! Concentrate more on you for now - you really cannot change anything else yet, and will need your strength and good health to handle whatever the future brings.

Thanks D2. Mom is not recognizing ANYTHING, she will when I bring it, but when I am not there she says these things are not hers, and depending where she is in the day she does not "trust" anyone that the pictures etc. are hers. She says "where did you get those pictures?" as if they were planted to confuse her. After a few back and forths with the NP and geriatric psych, they have put her on depakote because of her behavior (she is the one yelling at other residents to "get the hell out of her house", and one of the residents who is a much larger woman apparently responded in kind) so there is a safety issue. This happens all over the unit, not just her room area. She is like an unruly toddler and she requires so much one on one that they cannot support. They let her wander around, and will try activities with her again this week (she would yell at other people during those too). I am checking into two other local facilities that may have a more homey dementia type care, but she is in a "pending" state with NY medicaid...so I have been told thus far that we have to wait for the app to go through.

Like so many, I am at this alone, no siblings near by, and I just had a hip replacement myself and am having some mobility issues. I think the guilt comes from the thought that if we had been able to get her home right after rehab, with full on help and aides, she may have adjusted, but she was to be released while I was in the hospital, and because she could not participate in care planning due to the dementia, it was not safe to send her home, and then the extra time there just seemed to put her over the edge of confusion.

And if we had to pay for this place, it too is something like 12k/mos, which she does not have. I got a bill but the medicaid app is to cover the time she has been there since insurance ran out.

And, Barb, 12K in funds! If mom's place cost that much, we would be in deep doodoo. Places will vary from state to state, or even community to community, both in cost and what is provided, in addition to how well it is provided! Some good, some great, some not worth looking at! I was only pointing out that while mom's place has some of the "amenities" that you listed, others were not provided. It was also to point out that many of today's facilities are NOT what were available years ago. If the current care places were still like that, I would have let my brothers push for taking mom in.

Something else I had in my original comment, and meant to include here:
maggiecat18 was not asking about caring for her mom, either in mom's place or her own. She was feeling guilty about clearing out the apartment, second guessing whether mom could return to her "home", and whether she should renew the place, just in case. She was not wavering on caring for mom, either at her apartment or her own place. My take on this is NO. Mom was living alone, and was NEVER going to get better, only worse. If she is anything like my mom, even if she moved back into her place with daughter to care for her OR moved into daughter's place, it is NEVER going to be going home for her. Although sometimes surgery can make the dementia seem a lot worse for a while after, and it might subside some, she is never going to be 100% and will not likely return to the pre-surgery level. There is no guarantee that the side-effect of the surgery will get better at all, so if she needs to be in a better care place and maggiecat18 does not have the capability to provide that, then mom needs to be in a safe, caring place.

To maggiecat18 I would say if at all possible keeps some of mom's favorite things. Maybe bringing one or two, now and then, might perk her up when she sees her things. If there is a history behind some items, bring those and you can relive that history together. Mom had some pictures that she likes to rifle through. I got her a photo album for them. If any items bring on tears and bad reactions, then no, don't bring anymore, or take those that do away, but sometimes having a few items from the past help. Also do not be concerned if she is not acclimating. Most of the residents at mom's place seem fine, but a few still have their moments (likely sun-downing) - mom took about 9-10 months before she stopped harping on my brother to take her home! Home is now a previous residence, and she also wants a ride to her mother's place...

Just so you all know, the NH my mom was in had mostly Medicaid patients. To look at it, there were NO bells and whistles. But the did have medical staff that visited to do Medicare- paid patient care.

Part of this may be because they were located in a suburb of NYC, where there is a high concentration of docs.

Those of you who have followed my rants since 2013 know that we had many, many issues with this place. They totally sucked at communication. But in retrospect, they provided a good quality of life for mom and good continuity of care, despite some hiccups.

karyll;
I had a different comment to post, but in the time it took to write up all that I had to say, more posts came in, including yours, where you conceded that we are not all me me mes. So, that comment has been put away.

I will say, like others, not everyone is cut out for care-giving, either physically or emotionally, not everyone has appropriate accommodations to care for someone else, and not all facilities are alike. I also do not like the bandying about of the term "nursing home" and your mother does not either, as it brings up memories of the places available for elders back in the day (even as late as 2007-8 when my dad was placed in one by mom, there wasn't much else available.) To me a REAL nursing home is more for someone who needs nursing care, either rehab or long-term nursing care (REAL nursing care, not just CNA or the aides in AL/MC.) There are MANY places now with AL and MC which are NOTHING like the nursing homes of old (or some probably current.) Enlighten yourself and take a tour of a few. You might be surprised.

While the place mom is in does not have all the bells and whistles Barb mentioned, they do have activities, both in house and out, exercise room, games, puzzles, a hairdresser comes once/week, nail-trimmers that come every few months and many fun things to do. Any other medical we need to address, but it is NOT a place where residents are sitting, droopy headed in wheelchairs all day! They range in age from mid 50 to 100, and in various stages of cognitive decline, but certainly not drugged out, doped up slobbering people ignored by the staff! I have become friends with the 100 yo, and she is quite the character (we share love of jigsaw puzzles!), still has/uses her own phone, goes out to eat with her daughter often and is very nice! Many others are quite capable as well, many, like mom, need a safe place to be.

This provides more activity and socialization than my brothers could have provided, which does help keep the brain a little more active than sitting around the house. I am one who would not be able to care for her physically, and my current home is still needing repairs, and in addition cannot be entered/exited without traversing a full set of stairs, which mom would be VERY hard pressed to manage. I am also one who does not have a warm, fuzzy, comforting past with mom, so although I cannot and likely would not care for her 24/7, I still worked on finding the right place for her, take care of all her non-personal care business and visit when I can. It does take up a LOT of my time, taking away from things I need to do and want to do, but it is what it is. Also having read many other threads, consider the age of the "children" or spouses caring for their LO - many "kids" are in the 70s, some spouses in their 80s. I suspect you are no where near that age. I am a bit younger, but have physical limitations. I have to be careful what I do caring for myself - caring for her I would likely be injured or worse!

One other bonus to finding a nice place for a LO: instead of spending most of your time care-giving and cleaning up, you can spend MORE QUALITY time with that LO, and as a BONUS maybe even get a little ME time in (you allude to this, but we ALL need some time to ourselves, to regroup and try to enjoy some of life too!)

Harpcat, I like to think we had a guardian angel of a discharge planner when mom broke her hip. She sat with us and asked about mom, and mom's resources. She took out her list of places with open rehab beds. Several others were higher rated, but this one had formerly been a Catholic home and the decor and chapel were still very " Old Catholic School". We knew mom would love it. It was about average for Connecticut, $12k per month for a shared room.

All of the specialists seemed to visit at all the NH's in the area.

Thanks Barb. The NH where my dad is only has an audiologist and podiatrist ever 3months. No dentist or psychiatrist or other specialists. God help you if you need one! These are things to ask about when choosing one.

The interesting thing, Harpcat, is that it was neither highly rated nor very good at communicating. It's St John Paul, in Danbury, CT. All those people
( dermatologist, wound care, podiatry, etc.) were not on staff, but They came in as necessary to tend to patients. We had to take mom out if we needed to follow up with pulmonology, or neurology, but we realized that the benefit to mom was far outweighed by the damage being done by transporting her hither and yon.

My mom was very sweet and compliant but her care would have been overwhelming for amateurs. And I think part of her compliance had to do with the fact that these were paid professionals, not her children asking her to exercise, do speech therapy or use special eating utensils.

BarbB I’m impressed with the quality of care at your mom's NH. My dad's is quite expensive and supposedly top of the top here. All of the medical staff available at your mom's is unusual. May I ask where it is located?
One thing to mention regarding another poster's reluctance to put her mom in a NH, is that not all NH are horrible. And also, not every caregiver has a "sweet" parent to care for. The thing is to know your limits and not to do your own self harm in terms of your own mental and physical health. No one should judge another on their choices.

My mother's nursing home was filled with folks zipping around in motorized wheelchairs, going to mocktail hour, playing cards and attending Bible study.

There was a volunteer with a cute little therapy dog, two nuns and a priest who visited every day, a hair salon and OTs, Pts and speech therapist who were available to consult as my mother's skills diminished. There a geriatric psychiatrist and later a psychiatric nurse practioner who kept mom's mental health good. There was a wound care doctor for the bedsore that never had a chance to develop once the nurse spotted a tiny bit of red on her coccyx after a bout of pneumonia. There was an audiologist, a dentist and an eye doctor who visited. There was a podiatrist who trimmed mom's toenails every six weeks.  There was a deratologist
who came in and caught a bit of skin cancer early.

There is simply NO way that we could have replicated the care my mother got in a home setting. She was far better cared for in her nursing home than any untrained lay person, even a very loving one could possibly have given her.

My brothers are engineers and I'm a psychologist. Care for a 90+ year old dementia patient with congestive heart failure, pleural effusions and a hip repair? That's a job for a village filled with professionals.

JeanneGibbs thank you for your kind comments and for sharing your experience.

jeannegibbs, no I did not mean to be judgmental. No, I don't think everyone puts a loved one in a NH home out of selfishness. At times, this is the only thing to do. But I do believe some put a loved one or relative in a NH to get out of caring for them, especially if the state is paying for this. I'm sorry but I have been through so much with my dear mother and at times it seems like too much for me. Just to see her suffering is killing me inside. But she still remembers her loved ones and she still knows she is living with us. If ever a NH is mentioned she starts with, no, you really wouldn't put me there, would you? She has told us when she was younger and not sick that she would rather be dead than go into a NH if ever that time was here. She is really not so much trouble for us as all she wants to do is lie down and watch tv. But of course we have to do much for her as she needs to be assisted in everything she does. Aside from doing things for her, she really isn't much trouble. It can be exhausting just having to be here and really not to have much of a life of my own. But she is a very sweet and loving person and she still cares so much for her children. She doesn't want to be a problem to us and she doesn't realize all of the self-sacrificing we have to do. She has lost weight and doesn't have much of an appetite but at times all she wants to do is eat. She has good days and bad, I guess like us all. I have a friend who visited someone in a NH and was told they are all in wheelchairs with their heads down and other negative things. Another friend put a family member in one of those places and I told her what I heard about in the previous sentence. She agreed that is how those places are, but the family member runs away and she can't control her. This is not the case with my mother. She needs help even to walk. As I have said, we are trying our best to take care of her, but of course we realize a time may come when we may not be able to give her the care she really needs. If this time does come, we may be forced to put her in a NH, as we definitely want her being taken care of the way she should.

With all said, this is truly a most sad thing to be dealing with and something that none of us should ever have had to or will have to deal with. My faith is strong and I have much knowledge from the Bible, so I have a wonderful hope for the future. I believe it is not up to us to tell others on this site our beliefs. So I will keep it at that.

I am really suffering much in my situation and the misery is so bad at times that I really feel so sick inside. No, it's not only my mother but other things I am dealing with in this horrible sick world. And no one can say it isn't sick, just turn on the news every day. I just have to busy myself with other things and get my mind on up building things.

But I do hate seeing my mother suffering from dementia and I am only trying to make things a little better for her. While I have it in my control to do so, I will. But if things change I will know I did all I could do. This is all I am meaning that if someone has it in their power to help a parent and can do this, it will not go unnoticed.

Karyll, I wonder if you realize how judgmental your post sounds. Did you mean it that way?

Do you really think that all caregivers who have decided the best course of action is to place a loved one in an appropriate care center are exhibiting "me me me" selfishness, and have no love? You admit that you may some day be forced to place your mother. Will that mean you stopped loving her, and that you are then just thinking of yourself? Or is it just other people who are selfish when they do that?

Both of my grandmothers spent their late nineties in nursing homes, about a half century ago. Neither grandfather did -- one died in his 50s, the other in his 70s, after brief illnesses. Yes, in many ways things were simpler then. Most people died from their illnesses and did not linger for decades incapacitated. But that was then. This is now. We have to deal with present reality.

There probably has never been a time in this country when there have been so many choices for caring for disabled elders. There are still some really bad people warehouses out there, but there are many caring and competent facilities, too.

In his very insightful book, "Being Mortal," medical doctor Atul Gawande explains why old models of family caring for elders forever does not suit modern realities and how encouraging it is to see many new care models being tried in our facilities. He has many specific examples, including the end-of-life story for his own father. This book might help you see things from other perspectives.

I sincerely hope you are able to continue to care for your mother in your home. But please realize that isn't the only possible loving decision.

Maggiecat18, when our mom first displayed dementia symptoms, all 4 of us daughters worked to bring help into her apartment to enable her to stay there as long as possible. When that became unsafe and she needed assisted living level of care, my newly-retired sister took her in. The rest of us provided some respite each month. That worked fairly well, but after about a year the dementia had progressed and mobility had declined and Mom needed nursing home level of care -- which is always difficult to provide in a private home.

We found a nursing home for Mother. The sister whose home Mom lived in was devastated that she couldn't continue to provide care. She second-guessed her decision for months, and was miserable. But something strange happened. It became obvious that Mother was actually blossoming in the nursing home! She did activities. She loved the food. She felt she was not a burden on anyone. She made friends. We were absolutely amazed, and my sister's depression began to lift. Mother had 2+ years in the NH, and was content. Enabling her to be in an appropriate care center was the loving thing to do.

In retrospect it would have been unkind to not provide Mother with the level of care she needed and deserved. But it is hard to see that when the hard decisions have to be made.

There are lots of ways to show your love. Doing what you honestly think and feel would be best for your loved one is a key sign of love.

What's all this talk about guilt???? What happened to love???? My great grandparents stayed home until they died as far as I know. Yes, things were a lot different some decades ago. Things were more simple and people cared for each other instead of thinking of me, me, me. Yes, I understand the time may come when a mother or father may have to go to a NH and things may get out of our control. But when our parents have dementia it doesn't mean to go ahead and put them in a home because their memory has declined very badly. Believe me, I know how it is to be stuck in the house most of the time to care for my mom with dementia. But just today I ate a salad that reminded me of the salads that my mother used to make and I cried. She would tirelessly work for her family and be very self sacrificing. When I was sick for quite awhile she slept on the floor aside of the couch I was sleeping on. She was ALWAYS there for me!! Yes, ALWAYS!!! And now when things are inconvenient for me because of my mom being sick, do I just put her in a NH??? No! I will try my best to care for her here and allow her to have some of the dignity she has given to me. Of course, I realize things may get very very bad and I may be forced to put her in a home. But for now, I will love this frail little person who was always there for me. It won't last forever!

STOP NOW WITH THE GUILT - just by asking in the manner you did shows us all you have done as much as you can - THEY ALL ASK TO GO HOME but if you question her closely she may not know what 'home' means - ditch the guilt & assume the mantle of caregiver like we all have had to do - your mom is a 3 or 4 year old with lots of extra knowledge & you never know when those smarts will arise

Your job now is to protect her & going back to her app't doesn't sound like a smart move from what you have said - our loved ones with dementia don't realize how bad their situation is [my mom was sure she could get an app't on her own when she could hardly get a glass to her mouth to drink] & I think that is natures way of self-protecting them from realizing how badly they have declined -

I take it as such for my mom & refuse to have any guilt about it rather I know I can look myself in the eye any morning when I brush my teeth with almost pride that I have maximized her life situation as much & as well as I can -

I work a lot for her to the point that her net worth is slightly higher now than when I started taking care of her 5 1/2 years ago - her aunt lived to 100 yr 7 mo so I need to keep this in mind that this care could last for years to come & if I carried a cloak of guilt around I would not be able to as effective as I am for her as her advocate

I hear many here that express guilt for doing the right thing for their parents & that accomplishes nothing as well as being a drag on your spirit - rather once that decision is made then mentally change your clothes from 'child of mom' [no matter what age] to 'protector of mom' - this will allow you to see things as an adult in caretaking role rather as mommy's little girl who always does what mommy says - that was your old role & now times have changed to your new role of the adult of the 2 of you - let her still think she has a say but don't feel bogged down by what she says because 9 times out of 10 if you asked 30 minutes later you might get a different answer

This doesn't mean that you don't treat her with the respect she deserves but rather you fudge things, you do theraputic fibs, you mislead her for her own sake, you agree to some things that you will never follow through on just to keep her as blissfully ignorant & happy as possible - no body said it was going to be easy!!

go the extra mile and follow your heart. You will never regret the action and hopefully you will be honored if you ever endup in mother's state of affairs.

Thank you all for sharing, it is tremendously helpful to read your stories and experiences and the consistency in the threads is, in the end, making the best decision you can at the time. I was working through the reality of it as we cleaned up in her apt today, even if mom was at her "pre-surgery/NH" level, she was not really able to sort things out, she would call me in the afternoon and say "I have no idea where I was, or what I have done today", and then a few minutes later tell me she did not go to "work" (that's what we called daycare) , and a minute later make up some story about someone. Early in the day she could deflect questions, later in the day, I think conversation became harder, it was too confusing if she was tired. It has been progressive but slow...my description of mom is that she has been losing cards out of her deck. I would say 26 - 30 cards in the deck, because she can still dress, feed and is "continent" though rushing for the bathroom now. So would she be more comfortable in home?, on some level maybe, but that does not mean it is the best or most viable solution, even if I would like it to be.

I did file the paperwork for her apartment, in case I need more time to clean it out, but I think I know the reality is that even if she did not need to be in a NH, she would need to be in a facility., where she can have meals, and be with other people, if she is confused she probably does not register that the other folks are confused too.

I asked them to test for an infection and will know more tomorrow.

My mother is suffering from advanced dementia and requires 24/7 assisted care. My brother and I live with her and we get only 6 hours/week help from an agency. Our mother has been the best she could be to us for all of our lives. There have been times when she refuses to take her meds and I have told her if she won't cooperate we will have no choice but to put her in a rest home. She says, oh no, I don't want to go. I have heard nightmares about those places. Recently I think there was even something on the news about someone hurting a man in one of those places and I think they had it on a camera. I guess not all places are the same but we are trying our best to keep our mother out of those places as we know how extremely miserable she would be there. Of course, one day, perhaps, it may be beyond our control to keep her home with us if she gets so bad that we can't care for her. But for now, we are trying our best to keep her as comfortable as possible at home with us and I know if things were reversed she would definitely not put us in one of those places. It takes a lot of love and self-sacrifice but I guess it can't last for too much longer. I only hate to see the way she is suffering and the different person she has become. But she is still so loving and sweet most of the time. If you can find it in your heart and time, think more before you put her in one of those places.

Ideally, every one of us wants to remain in their own home, quite possibly. However, there does come a time when it is no longer practical, safe or ethical. That's where you step in, i.e. the pragmatist. A prime example of a woman who was "a virtual eleventh-hour epic fail" was my mother. She was 93 years of age and DEMANDING to live alone in her own home in Massachusetts. Her 2 adult children (myself living in Maryland) and my brother living in California had to "be the bearer of bad news," if you will. My mother was legally blind, had congestive heart failure, atrial fibrillation, arthritis, blood pressure of 60 over 40, was falling and not telling us and was starting fires in the home. What resulted is me having to move there and disrupt my life. My response to her was "mother, you've waited too long to make ANY decision about your living arrangements; now I must live with you."
In summary, your mother CANNOT NOR SHOULD NOT "COME HOME."

I can say only the following. If our parents were loving and kind to us, we probably want to do the same for them. But there is a problem: they are getting old, feeble and will most likely develop dementia. When this happens, YOU pay the price for that by taking care of them and you essentially give up YOUR life. That is not fair. Enjoy life while you can, it is far too short. Love them in every way but face the fact the issues that exist with the parents are NOT going to get better. They will only get worse. Prepare to put them somewhere where they are taken good care of. You can visit them and then keep up the loving relationship. If you don't do this, I assure you that you will grow angry, resentful and sorry you did not do this as YOUR life will soon be lost in the shuffle. This is YOUR time - don't lose it.

Lots of comforting advice & experiences to benefit from on this site. I too feel guilty placing mom who has dementia, just a month ago after being with us for just 5 months. We tried all we could to help her adjust, it didn't make a difference. Her behavior also caused serious safety issues b/c she kept wanting to "go home" (a.k.a back to living with my abusive & neglectful brother).
Mom is "still in transition" in a very nice CH, with a VERY patient CG. I still have much anxieties over my decisions, but I remind myself "I did all I could" for her safety and well being. Be the "strong" pragmatic daughter you are!
Best of luck to you.

Like Grammy said, tell her anything, she won't remember 2 minutes later. I am so sorry about your Mom. Don't try to reason, just go along with the illness.

If she has dementia, she will only get worse. My husband's doctor told me it was downhill from where my husband was at and to prepare myself for the inevitable. As days go by I can see the change and each day I take one step at a time. You think that she will reverse her mental state if she goes back home. Don't count on it. You will only find that if she does go home, you will have a more difficult time to place her in a NH. We all feel guilty that we should have done more. As an example, two days ago my husband knew I was his wife and now he looks at me and asks me my name and how long will I be with him. He said I don't look like his wife and who are the other people in our home. There is no one else in our home. I am thankful that my husband is not belligerent. He is a kind man who thanks me for everything that I do for him but it's sad that he can't remember me.

Erratic Behavior sounds like a UTI to me. If Mom is in Depends and they weren't changed when needed while in the Hospital - she very likely has a UTI and possibly even a Yeast Infection - yeast can be on the buttocks too. Yeast can be anywhere and everywhere on the body.

Before you must renew or not renew, make sure she doesn't have an infection causing the irrational bahavior.

My guilty side was full of worry over allowing a person with dementia to live alone without the assistance and supervision they needed. The idea of them being safe and protected in a facility brought me overwhelming relief and joy. So, I had no misgivings about doing what I knew was best for her. Have you had an assessment to determine what level of care she needs? I'd get that worked out pronto, so you know what plans to make. I might consult with an expert on Medicaid qualification, if you think that is a possibility, as well checking to see if she has long term care insurance or other assets to pay for her care. I hope you are able to find your answers and feel better about whatever decisions you make.

Has she been deemed clinically eligible for nursing home care? If not, please don't lose the apartment. First things first, make sure that she is eligible to stay and then cross the bridge about the apartment.