What is life like when LO in MC?

RobinNicole

Good morning all,

I have been following the many threads on placement of a LO.  I am starting to research and have pulled together the recommendations others have posted and that in itself will be challenging evaluating the many options in our area (CT).  I have also read and heard that sometimes it may entail a couple of placements if things do not work out.

I am trying to understand what a typical day / life is for the caregiver once your LO is placed?  Currently so many of us are stressed, worried and navigating all the changes of the journey and it is draining.  What does it look like when they are placed?  I am guessing that I will worry less about her safety, but what else?  Medicine management, meals, socialization (hopefully if she participates which I assume she will as she is very social).  Do you work with the facility to have a plan on calling?  I would expect my mother to be calling at all hours because I have been her person for so long (dad died when I was 19).  I would visit her regularly as would my family - but I guess what I am asking is - is there a bit of relief?  I know I will probably have guilt when she is sad etc.  I know you develop a care plan (not sure what that entails) so I guess I get calls if she falls etc.  but I would hope in some respects I can go back to being a caring daughter v being a caring caregiver.  Would appreciate your experiences.  This board is so helpful and I appreciate everyone sharing.  

abc123

Dear Robin, welcome to the forum. I’m glad you found us. There are many wise people here with years of experience. We do our best to support each other emotionally. Someone will come along with answers to your questions. I’m sorry your mother has this awful disease. Mine does too. Dad and I are presently taking care of her at home with the help of Home Instead. I just wanted to welcome you. Feel free to ask any and all questions you may have. You can vent here too! We understand.

GothicGremlin

Hi Robin --

I'm also glad you found us.

It's been about two months since I placed my sister Peggy in memory care. Here's what memory care looks like for us now. 

The caregivers there get her up and dressed by around 7:30am, and then take her to breakfast. Her memory care unit is relatively small, maybe 22 residents? Even so, she'd never be able to find the living room/activity room/breakfast area from her bedroom. She has breakfast with others. They have activities and exercise class every day. Sometimes they go (escorted) to the assisted living side if there's something going on over there. Noon is lunchtime, then activities after lunch. Dinner is at 4:30ish, movie to follow. The caregivers get them into bed by around 9pm-ish.

Caregivers check residents and get them to the restrooms (almost always before accidents happen) often, and help them out as needed. Peggy's not capable of toileting correctly so she needs help there. She also needs help showering so they help her out with that as well.

They do laundry twice a week, and manage her medications.

Unfortunately, I now have Peggy's phone. It was causing her so much stress that they asked me if I'd take it. She'd leave her phone somewhere, wouldn't be able to find it, spend hours looking for it, and generally stress out over it. Or, she'd forgot how to use it ("which part of the phone is actually the phone?" Peggy asked me not that long ago). Then, somehow, who knows how, she managed to change how her name and number appears when calling. Usually the phone rings, I see it's Peggy, and I pick up. For about a week my phone would ring, instead of her name, I'd see "Unknown" with no number. It looked like spam so I wouldn't pick it. But it was Peggy. And of course she'd call me 10 times in the  space of an hour. So I'd see a string of unknown callers in my recents. Arggggh.

So anyway, I made up a story to Peggy that her phone is broken and I need to take it to the Apple store. It's been about two weeks and she hasn't asked me about it for about a week, so I'm thinking we're done with that.

To call her, I call the main number, get transferred to memory care, and then they go get Peggy, and we talk.  It's worked out well for me since I can (mostly) now control when we talk. It's a big deal since her personal best was 31 calls in one day.  I tend to call her once every day, and then visit when I can.  Visits are getting more difficult with omicron - testing and proof of vaccination is required now for all visits.  I don't mind, but the testing requirement limits how often I can go, just because I can't get that many tests. At least that requirement goes away in a month.

Peggy's adjusted really well to memory care. At first she viewed it as a punishment and she was really upset, but now she likes it. She's told me on multiple occasions that she really likes it there, everyone is really nice to her, and that she wished she had moved there sooner. This is a huge relief to me because, even though it's not productive at all, I had a huge amount of guilt. I sometimes still do, but not anywhere near as bad as I used to.

I have a caregiver I use to help me with doctor appointments, but we're getting to the point where I think the doctor is going to start having to come to her. She's just not that mobile anymore.

My next problem to solve will be how to arrange the doctor visits. Peggy's not yet 65, so not eligible for medicare yet, so she's on her own for whatever the supplemental insurance coverage is for those types of visits. I've been told to contact social security and so that's on my list of things to do this upcoming week.

Anyway, that's what life looks like. It's not bad, but different, sometimes sad. Mostly it's good for her with the occasional meltdown. Less stress for me (I'm not getting called on the phone all the time), but there's still plenty of stuff to worry about and take care of. 

Sorry for the novel length post here, but I wanted to detail as much about life in memory care as I could.

Tfreedz

Thanks for the very detailed day in the life for Peggy and you! I’m also feeling anxious and stressed about placing my mom in the upcoming weeks so your experience has helped calm the nerves a bit.

RobinNicole

Thank you ABC123 for the welcome and thank you GothicGremlin for sharing such detail on this part of the journey!  It sounds like your sister is adjusting well and while you are never “off” she is safe, is enjoying many aspects and you get some relief.  I hope it continues to provide you both with what you need   The phone part is of interest as my mom can call family a lot   I am hoping w structure there is some distraction.  One question- do they spell out when you need aids or companions on top of their staff?

If you don’t mind please continue to share next steps as many of us are up next   I am so grateful to you and everyone else

My mom is very mobile and handles a lot of her daily activities ( laundry, cleaning) but would benefit greatly from social activities   I worry a bit like many that my mom straddles some independence w serious memory issues and may feel she is “healthier” but I know they have seen this before 

Thank you agaun!

Emily 123

Hi Robin,

My Mom   (late stage 4 or early 5) moved to a dementia oriented AL, that also has MC available.  I chose it because mom's memory and anosognosia was such that I wasn't sure that a regular AL would prevent a very stubborn 91 year old from sliding out the door to try to go for a walk on her own.  My mom is still spry for her age, so there's a physicial mismatch with about 80% of the population of her AL, but in terms of a fit for where she is with her memory I think it's good--she likes it.  She's a trooper, and had wanted a place of her own, so that was a blessing, She was a bit disoriented  at first,  but the staff let her slowly acclimate and she did well. It took her about 6 weeks to really settle in, and at around 3 months she was starting to have a routine where she was remembering her neighbors and participating in things she wanted to do. When your mother has her assessment and intake, the nursing director should sit down with you and go over her care plan.  That should address the goals of care in each of the ADL areas.   For example, my mom uses incontinence briefs, but forgets to change them.  Her care plan notes that they will empty her bathroom trash twice a day to make sure she's changing her briefs AM/PM.  If there's something specific you  think they should be doing or need to be aware of, get it on the care plan. My mom isn't a big 'joiner', especially with the AD, so we ammended her care plan for them to prompt her for specific activities she might like (Wednesdays are 'get in the van and eat luch out' days!).  They do call if there's a fall.  So far, so good with the two she's had. 

In terms of what I have to do--mostly it's routine reminders because covid's really done a number on their staffing on the AL side and the DON's office looks like a bomb's gone off in there--so reminders that Mom needs to be on the schedule for a haircut, or a toe trim with the podiatrist. But mostly I can just go and visit or take mom out.  It's nice to have our mother/daughter relationship back, and she doesn't give them the pushback she was giving me, so win-win.  I hope it's the same for you.

RobinNicole

Thank you Emily 123.  More good info!  I am glad it is working well for you and your mom and you can enjoy your time with her.   Are evaluations standardized?  Or does each facility have their own?  Sounds like some offer AL w extra options and move to MC when needed 

Tough to evaluate places w COVID raging and staffing shortages but it’s so important for reviewing care and what her future home would look like.  I hope to find a place and have her settle in ( over time) like your mom 

Emily 123

Hi,

It seems like each place has their own version of the form. They'll tote up what assistance is required, finalize the care plan,  and then assign a care level based on that.  Once Mom settled in and could navigate around she needed less orientation and so they bumped her down a level.  That was a nice suprise and will help make the money last a little longer. Every little bit helps.

GothicGremlin

I don't know if the forms are standardized. Prior to Peggy moving in, I spent time with staff and her doctors creating her care plan. Staff also gave me a booklet to fill out, maybe 4 or 5 pages? What are Peggy's favorite songs? Favorite music genres? Books? Is she athletic? What does she like to do - hike, walk, dance, watch tv? A lot of stuff like that. I suppose that's for activities, ways to make her feel at home, and ways to engage her.

Staff hasn't really advised me when to add personal caregivers, or if to do it at all. I have a caregiver who I've been using since 2019, and Peggy's fairly attached to her, and she's really good with Peggy. So, she'll continue visiting Peggy a couple of days a week for continuity, engagement, and spotting me in case I miss picking something up that Peggy needs (like Depends). Between us, we're on it. We'll do that until it doesn't make sense to do it any longer.

Also thankfully, Peggy has some good friends who come by and visit, so between her friends, my caregiver, me, and a couple of other relatives, she has someone coming by to see her almost every day, even if it's not for lengthy periods of time. And yes, I do try to coordinate all of that. I think Peggy is doing as well as she is because she doesn't feel isolated from everyone. Even the veterinarian Peggy used to use when she had a zillion cats has come by a couple of times to visit! I can't even begin to tell you how grateful I am for her friends.

I have a feeling that if I wasn't as on it as I am, staff would tell me what's up, but I'm very present, even when I'm not there.

I'm really glad that things are going well for Peggy, and that she's happy there, but the decline is relentless. It seems to be going a little more slowly now that she's not so stressed, but it's there even I don't detect it. And yeah, I am still "always on", but at least I'm getting some sleep now.

RobinNicole

Thank you Emily123.  Very helpful!  Looking at a couple of places w AL w care and two different levels of dementia care    It is reassuring to think they can age in place in same facility or campus.   I hope when it is done and she settles i too can settle back a bit more

RobinNicole

Thank you again gothic gremlin for sharing more about Peggy.  My mom has a companion she adores and I would think visits ( when she is placed) will bring familiarity and peace   We have much research to do but all this info is so helpful

GothicGremlin

Hi Robin -

I agree 100% about your mom's companion. The more her companion can visit, the better.

I'm glad that all of us who have posted here can help with advice.  When I first came to this forum, I had no knowledge of Alzheimer's, and the whole thing was overwhelming. I've gotten a lot of great advice here.

Kdsfit

 My mother has Alzheimer’s. As selfish as this sounds, she started in independent living to start. Her behavior has changed so badly that i knew i could not care for her. She has gone from a living great mom to literally a crazy lady. She progressed to assisted living and as of March 2021, memory care. She sent remember the move (forgot about it within a few weeks). She made friends. They have daily activities. Is it perfect. No. But i know she is safe and taken care of. Most of the staff are truly caring. Her behavior is difficult at best. There is a group of Dr that come to her facility so i don’t have to take her out to Dr. They are great. I’m very pleased with their care and listening to things that are going on. Life is still stressful but so much better. I have one sibling. He lives near me and does nothing. Doesn’t see her. Nothing. But he and his wife happily tell me what needs to be done regularly. That is where the stress is now. 

I’m happy where mom is.  She likes it and will tell me that. She is safe and cared for. I occasionally receive phone calls from staff ( mom has landline in her room with phone numbers TAped next to phone). She no longer knows how to dial phone. But overall HUGE relief for me. I check in with staff and nurses regularly, as well as going to see her twice a week. I wouldn’t change a thing. For me, this has worked well. 

I hope this information helps. Wishing you all the best. 

RobinNicole

Thank you Kdsfit.  It is so reassuring to hear you have some peace and your mom is safe and happy.   Once again hearing about others journey and experiences makes me feel not alone   People understand the stress and questions.  Thank you