That feeling you are betraying your parent...

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Mom with dementia attended social daycare 6 days a week. She broke her shoulder, went from hospital, to rehab and seems to need to be in a facility. Her dementia has worsened while there and her behavior is erratic. I know she needed a higher level of care, but I feel so guilty packing up her apartment and getting rid of her things. Not that she could participate, but if feels like such a betrayal...Mom lives (lived) in rent control apartment. If I do not send in her renewal papers this week, she will no longer qualify and I will have to move her out by the end of the month, but I am struggling with the idea that if I do this I will regret it in the future. I think all of us with dementia parents worry that they are going to come to their senses and flip out because of all the choices we have had to make for them. She keeps asking "when am I going home", and tonight was screaming at me about going home so I know there is no reasoning with her as she does not understand why she is there, but like I said, I wonder if she was "home" would her behavior normalize...and the pragmatic side of me knows the answer but the guilty daughter side feels like this is one more way I am remiss in her care. She senses that she has been there awhile, but has no sense of time, but is not "acclimating" like I am told most patients do, so that makes me continue to wonder what the best plan is for her.

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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.
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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!
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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.
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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.
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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.
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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...
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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.
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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!)
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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.
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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.
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