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This was the hardest thing I think I've ever done. It's only been five days now. My mom is very confused. I feel so bad for her. Everything has changed in her world this past year and now this too.



We couldn't afford private pay so I had to find a place that had a memory care bed that took Medicaid.



We moved her in and they moved her to a different room the next day. They still haven't put her name on the door so I'm afraid she doesn't know how to find her room until they do.



The first night she slept in her clothes. I asked about this and was told that she should have been put in her nightgown over night. They didn't even take the barrettes out of her hair and it wasn't combed. I saw her yesterday and she did have different clothes on but I don't see that her nightgown has been slept in. They don't comb her hair very well and her comb is already missing.



Does anyone know what exactly I should expect? I know mom walks around all the time. All the time. So, if she is walking all night, maybe they don't know when to get her ready for bed?



I was told to limit my time seeing her at first so she can get acclimated to her new environment. I was also told she would have some confusion at first. I visited her the second day she was there, I didn't on the third and visited again yesterday. I want to see her again today after work.



Just wondering is this is normal for someone in memory care? How do they tell them to go to bed? I always told mom it was time for bed, I put her nightgown on her and put her in the bed. I don't know how they do it at a place that has a lot of people. I'm hoping she will get used to it. It makes me hurt so much to see her this way.

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Something else I told myself I would post here. I know I said I would not lie to my mom. I did. I lied like a rug. You all were right, it is better to do this when they don't understand.

I just can't stop crying for my mom now though.
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Caregiverstress Feb 2023
Lying is the only option. In my opinion it’s cruel to ask them to try to reason through something or understand something they simply can’t anymore. So you lie. You lie to save them the stress. You lie to keep them safe. There really often isn’t any other choice.
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I am only glad that you already recognize that what you are going through is grief, and not guilt, the "other" g-word. Because grief is it, and there simply is no good answer to this.
Have you asked at the desk if there is something familiar to your Mom that can help her recognize her own room, something she recognizes. That was commonly done in places I am familiar with, not that the prettier decorations didn't go missing when a wandering one took a fancy to it.
You will just have to take this a day at a time. Not everything can be fixed; some things must simply be endured with us doing the best we can, and you are doing that. I am so sorry.
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They should have a routine to put the residents to bed each night. There's no excuse for her to not have had her nightgown on and her hair combed unless she refused it.

Keep track of these issues, request a meeting with the administrator, and ask about these things. Remember, though, that you're part of a team, not an adversary, so don't burn bridges.

One thing that I found helpful was to write a short biography of my mom to post in her room so the caregivers could get to know her. I told about her early years, her career, her hobbies, and her family. I also wrote a separate note that listed her likes and dislikes, what her general routine was, and any other information that seemed pertinent to her comfort and acclimation in her new surroundings.

I posted those on the wall of Mom's room with PLEASE READ across the top, and I also made sure a copy of each was in her chart. I also sent a copy to any hospital she was sent to, because hospitals are terrible with dementia patients. Once she went into hospice care, I made sure they also had that information.

I found those helpful for the caregivers to not only get to know my mom but also to humanize her. In general, memory care workers are great at getting to know their patients as they are, but it just helps more for them to know their history and it gives them topics to talk to Mom about.
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Msblcb Jan 2023
I completely agree with MJ1929.

I met with the administrator with a written document of the things I loved and the things that needed some improvement. (positive and negative). It also gave me a record of the conversation.

I also wrote a bio of my mom. It provided a history so that they could have an emotional connection to her before they met her. She was an introvert. So, it was impossible for the team to understand her without some reference. I also used white boards in the room to remind them of the things that were important to me. Those notes changed as new issues came up.

It was the most difficult thing I have ever done also. I look back now and still am amazed that I actually was able to do it. Give it time.....my husband wanted to bring my mom home just about every day the first few weeks.

I will say that your mom may never adjust completely. My mom did not. She did start to enjoy the activities but because she was an introvert, she never embraced what an ALF is all about.

Take it one day at a time.
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The grief that goes along with the dementias is all consuming, I think.....for ALL involved. It's a lose-lose situation: mom loses, you lose, the family loses, everyone suffers b/c dementia has robbed your mother of who she once was and left a shell of a person in her wake. So you had no other choice but to place her ("put her" sounds a lot worse) in a Memory Care home. I had no other choice myself but to get mom out of the apartment she loved in regular AL and segued into their Memory Care bldg when her dementia (combined with her mobility issues) became too much for the AL staff to accommodate. Mom was not happy, and neither was I. That was the beginning of the nearly 3 year journey we took known as the Long Goodbye.

Mom was well cared for in the Memory Care ALF, and she did love 'her girls' as she called them. Follow MJs advice about requesting a meeting with the facility administrator so you know what to expect from them, and better yet, THEY know what YOU expect of THEM. Leaving mom in her street clothes to sleep is not acceptable; you expect a daily routine to be followed with your mom, and what will that look like, please? Regular care conferences should be set up as well, so you can speak with the staff for updates, etc.

It's a very tough road, this Long Goodbye, for everyone involved. I never left my mom's place after a visit w/o crying. I lost her, day by day, bit by bit, and it was very apparent to me as I watched her drift further away from reality. Ativan helped her a lot when the Sundowning got bad, and hospice was a lifesaver for both of us at the end of her journey.

I wish I had some magic words to bestow upon you to make this ride a bit easier, but I don't. Just give yourself some grace as you go, and remember that sooner or later, your dear mom will be restored to her full self and be at perfect peace. That was what brought me the greatest relief of all; was after mom passed peacefully, to know that all that chaos & confusion was finally behind her, and she'd have a new life where she could dance & laugh as a whole person once again, with God, and the rest of her family she missed so much.
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I feel your pain. My mom has been in MC for two years and is still aware of who I am and that she isn’t where she wants to be. I live four hours away and see her once a month and use an Echo Show at the foot of her bed so I can”FaceTime” with her daily. My brother lives 30 minutes from her but he and his family visit a couple of times a month. Breaks my heart. My main advice is to stay connected to the staff and make sure they know that you are checking on your mom regularly. This is a very difficult thing to go through. Not everyone can afford in home care. And this is one of the other options. My mom has LTCI and that pays for about two thirds of the cost. I stay in touch with the director where she is and she is also on hospice which provides more eyes and ears on her. Praying you can find peace. It’s a struggle. Sending hugs. ❤️
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Asking the facility if you could install cameras also is a good idea. It gives you insight to your mom’s routine. On how she is doing both physically and mentally it gives you peace of mind that you can check on her at any time.
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Don't listen to their "leave her alone and let her adjust" advice. Go see her every day, if possible for you, and stay as many hours as possible. Go at different times of day and evening. If you observe that she is not receiving adequate care, start planning for another situation.

When my mother entered memory care, I saw her every day for 8 weeks. That was the only way I could feel confident she was safe and cared for. I was with her at the memory care for about 6 hours a day. She was high functioning at that time, so I went with her to their activities and concerts and encouraged her to participate. I went to meals with her. I sat with her in her room and explained that the aides who kept coming in were trying to help her.

I understand not everyone has the ability to do this, with jobs and also emotional overload.

But visit every day if you can, as many hours as you can.

While you're there, speak in depth with the people in charge, who might have titles like administrator or head nurse. Call them, email them, make appoints to talk in person. They should explain to you the routines of care you can expect for your mother.

At my mother's memory care, they really strongly encouraged all residents to come to the dining room for meals, 3 times per day. Before COVID, no one had a meal brought to their room unless they were having a severe medical issue.

At my mother's memory care, they brought in a mobile x-ray provider every time a resident stumbled, to make sure they had no broken bones. They brought in other types of mobile imaging and testing providers too. On the one had, it was good they were checking. On the other hand, sometimes I thought it was unnecessary, and of course it showed up on a separate bill months later. On the other other hand, the aides and even the "nurses" had such low English skills, they were barely able to read the reports from these mobile providers, so I learned to ask questions only of the head of nursing, who was a native English speaker.

At my mother's memory care, they had two evening aides working a building of 16 residents. Each evening aide was in charge of helping 8 residents get ready for bed, which included toileting, hair brushing, pajamas, turning the TV on or off at resident's preference. It was the same aide each evening.

Two evenings per week, my mother was supposed to get a full shower with this evening aide. Often my mother refused a shower, and the aides and administrators told me they were not allowed to "force" her to take a shower. And I did understand, with 7 other residents to get to in just a couple of hours, why the aide did not press the point with my mother on shower nights.

However, when I realized my mother had not had a shower for 2 weeks (the bar soap in her shower stall was dry and hard!), I spoke to the administrator again and told her that this is a type of neglect, considering my mother was in incontinence briefs. So the evening aide did make more effort to establish a rapport with my mother and get her into the shower.

This is the kind of thing you have to keep an eye on. My mother is in an upscale place, but even so, they hire the minimum number of people and there is never quite enough time in the day to care for every resident perfectly.

Sadly, the day is often informally organized around the residents with the most difficult behaviors, with aides tending to them more often to keep them from screaming, crying, refusing meds, trying to walk out the door after a delivery person, or saying mean things to other residents.

Good luck! Memory care turns out to be not as much of a break as we hoped.
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One of my favorite quotes comes to mind. "Normal is just a button on the washing machine." Make an appointment with the Director and ask all your questions (like, can you put a picture of your mom on her door?). Learn all that you can and visit this site for tips that you want and need.........no need to read all the topics that pertain at this time. Then, use the search window (upper right) to look for relevant topics.
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It is a difficult situation, and all you can do is the best you can. I think it is helpful that you can go so often especially at the beginning. I was not able to because I live out of town, and when I got there I found all sorts of things that were unacceptable. You are your mothers advocate and voice. Don’t become a drain on the staff with your demands and questions, but certainly negotiate a way to have her needs met in timely manner. My mom was very difficult and refused showers etc., and eating and even getting out of bed. That said I did expect them to help her with the basic needs. Make sure that what you want covered is on your moms assessment, otherwise they will not do it. Good luck, you are doing what is best for all, and this is a situation where not everyone gets what they want.
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Talk to your mother's case manager at the memory care facility about having a nighttime routine, where they put her in a nightgown, have her brush her teeth, help her with the toilet, comb or brush her hair, and then put her in the bed. She may not stay there, but it's best to have a routine. If your mother likes to listen to music, get her a simple radio that you can set to her favorite channel and ask the staff to turn it on softly. Make sure there are night lights so that the space is not pitch black. Maybe you can put some other identifying thing on her door such as tying a ribbon around the door knob, so that she recognizes her room. But it's common for people with dementia to get confused about where their room is and not to know which way to turn to get there. The staff should help her when needed. My mother went through many packages of combs. It's true that they just seem to disappear, and then sometimes I'd find one in an unexpected place. The same thing happens with clothes. My mother had so many clothes and bed linens that weren't hers in her closet. It's best to to get her clothes that are easy to get on an off: no small buttons or tight neck pullovers, elastic waist pants, etc. They wash and dry everything hot so get things that can take a rough laundry (no delicates). I visited as often as I could, and I tried to let my mother know that I'd be there for her, she wasn't abandoned. In the beginning, I took her out to a meal at a restaurant occasionally, but as her dementia increased she lost her table manners and forgot how to eat in public, so it seemed better to keep her at her place and bring things in that were easy to eat or drink. We took walks together around her facility and also just sat together in the common areas, inside and out. I learned how to give her haircuts in her room, as she couldn't sit still for a regular haircut. All the best to you both!
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rapidswimmer: Imho, it seems as though the facility should have a routine in place for bedtime, e.g. putting their patients in pajamas or nightgown, brushing their teeth, toileting and medications among other things. Hugs sent for this most difficult of times for YOU and your mother.
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Rapidswimmer, how is it going? Are you making progress? I have been thinking of you and hoping things are better.
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I had similar issues. I moved mom from the home my father built for her in 1960. She had never lived more than a few miles from where she was born. She moved 12 hours away from what she was familiar with. What I found is that as her memory declined she simply forgot it. I had a memory book made of each room in the house. I would often show her and she did not recognize it. I also made the decision to put it on the market. Cleaning out 55 years of memories….and yes my mom had saved valentines card from my elementary friends…..was gut wrenching. Every childhood memory I had was on that property.

But…you take one hour at a time. Three groups….give away, throw away and keep. I tried to be sure the keep pile was the smallest but that was certainly difficult.

As for your mom’s transition, it sounds like you are making progress. My mom liked some of the activities and loved the garden but she never really adjusted well, I think I waited too long to place her. Had I made that difficult decision earlier, I think she would have had better cognitive skills to adjust. But, you can only make the best decision you can when you are in the moment.

In my case, I went every single day for the entire 5 months she was placed. I was not completely happy with the care. I considered moving her but wanted to give it time to work out. Another move would have been traumatic for her,

I will say within two weeks of placement, my mom did not remember my house where she had lived for 5 years. It made me realize how much she had declined. It is very hard to measure decline when you are facing it every day. It is a little like a boiling lobster. You do not realize the water is hot until it is too late.

Stay engaged with the staff. Make your visits mom/daughter visits and not just task visits, While my mom’s placement wasn’t perfect, we did have quality time. She had a garden view. I placed flowers and windmills outside the door and we visited the garden every day. I prepared a home cooked meal every day. I would not have had the time to do those types of things if I was the only caregiver.

Leverage the efforts the staff can do so that your time consist of precious moments you will always cherish. Now that mom is gone, I am trying very hard to remember those interactions rather than focusing on what I could have done better. There will always be a list of what you wish you could change. But your mom is SO much more blessed because you are in her life. Keep that in your mind now as you navigate this difficult time.

My caregiving years were long but she died much quicker than I expected or wanted. Cherish every moment. Keep us posted.
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