My sister moved into IL in December. She agreed she was no longer safe at home. Now she won’t leave her room! Should I be concerned?

There are ways you can go to seek additional medical help. Was she ever married to a veteran or a veteran herself. Ask a lawyer..

In my experience I would put off AL until absolutely necessary. You are right that it is very expensive and if she doesn't need that level of care not worth it right now. She would still basically stay in her room if that is what she wants. My experience with AL is that the "assistance" was minimal compared to the cost increase.

Imho, she requires a higher level of care than an IL.

a side effect of antidepressants is depression Check the side effects & the negative changes in your sister.
My grandpa was doing the same..given up..not helping himself...despite my every effort.
I remembered that he loves to swim in the local pool in the summer...some of the ladies bring him treats etc...Makes him feel young again im guessing
. I reminded him about the pool opening in the summer again...He hasn't pulled out of his funk altogether. However, he has pulled out of it for at least 3, sometimes 4days of the week.
Your sister (like everyone) has to have a. something to do b something to look forward to c someone to love.
Remember the interests she had a passion for..and see if there's a way to make that happen for her
Sounds from your message that you really love your sister.
You might tell her you love her & need her to help you with some concern or problem. Feeling needed is a motivation to be here
So many elderly wait in drug addled isolation for the body to expire so they can go through the doorway we call death. noone to care for them or about them
You sister is very lucky to have you watching over her

Ha! I respectfully (and very sadly) have to smile at the AL suggestions. You are all precious people, particularly to be taking your time to participate in this forum (we're all super busy, yes?)....but....let me tell you my heart-wrenching AL story: I placed my beautiful mother in a "care" facility. She was a fall risk, so the facility deemed it a necessity for her to be in AL section - and yes - for double the cost! Sure. They "assist" when there is available staff...which because of COVID, is not there as often as it needs to be. AL gives interaction activities...sure....when the activities director isn't occupied with the sometimes more fun residents in independent living. When there are "activities", my experience was that they were pop-in video movies or coloring projects, even though their activities page was seemingly full with projects. My mother was bored to pieces. End of my sad story: Because of continued falling at the facility, mother was approved for a Hospice companion aide while at the home and facility refused to let them in, citing covid reasons. Mother fell while at the facility's breakfast table, broke her hip, was rushed to ER and, at the age of 92, had corrective surgery -- We, of course, did not permit her to return to the AL facility, brought her to our home, treated her like the angel she deserved to be, but she never walked again, and passed two Tuesdays ago after being in our home under Hospice and physician's care for 3 months. My heart is heavy, as in my family's case, mother would have had as much supervision - if not more - at our home than in the AL.
(BTW, we always wanted her to be in our home, but mother wanted to remain as independent as possible and preferred her own space) I well know that not everybody can bring their LO home - and that is understandable - but in our case, my high hopes for mother - and the reason she was placed in AL to begin with - for fun activities, and close supervision - were both, at the (very expensive) AL facility were not honored . I miss her every, single day.

Since ILs don't offer any "assists" (including transitioning and walking) it seems as though your sister should have moved to the AL level of care directly from her home. Was she very social when in her home? It may be that the activities of the IL don't interest her but she will be better off if she moves a bit during the day; can she get PT within the IL? It sounds like she is in a facility that has IL, AL and MC which is good. Hopefully, she can move to AL where they can provide an assist with transition from bed to chair. Perhaps it would be a good time to have her totally evaluated physically and mentally (is it time for a wheelchair so she can get around without pain?) so that you can make a decision with more information.

Yes an AL will eat up her funds more quickly but some facilities have a policy whereby they will fund the continued stay of a resident who has been a private pay for 2-3 years. Hopefully she is currently in that type of facility already. Be aware that most AL facilities Medicaid beds are extremely limited. Time to sit down with the facility Administrator and find out how it all works; if they do fund residents who have run out of funds, please make sure you have that statement in your contract with them.

It's a difficult situation for all involved. Hugs and prayers to you.

Why is she in independent living? She definitely needs more attention than in independent living.

AL really sounds like a better fit if their is someway to make financed line up. She really needs the daily care and assistance. Also she needs daily or weekly visits with physical therapy. I take care of my mom who also has lots of falls in past and without me she would have to be in a snf. It's difficult no matter the choices we make. Best of luck

It dies take time to get use to a new place.

Being on antidepressants can make you feel like that plus can make you suicidal.

Speak with her Dr about it.

Go visit her often especially the first month while she's getting use to her new place.

She moved into IL because of falls. Since then, what has been done to improve her mobility and reduce her reliance on pain relief medication (assuming she's taking any)?

It's no good telling her she needs to take up her bed and walk, a way has to be found to make it worth her while. What are the underlying issues?

She does NOT belong in Independent Living..............what benefit did your sister derive from moving there, exactly? She belongs either in Assisted Living or in Memory Care............in Assisted Living WITH a Memory Care wing would likely be best, if the intake coordinator does not feel she 'belongs' in Memory Care just yet.

It's a sticky wicket, in reality, Memory Care.............because those who are lucid enough to realize some of the other residents AREN'T, are generally unhappy (like my 94 y/o mother). She's quite out of it, actually, yet is in deep denial that she has dementia. So............she will tell you and anyone else who will listen that she does NOT belong in 'the crazy house' with the 'stupid idiots' who live there. Sad but true. THIS is the reality of moving a loved one into Memory Care: will they TOLERATE it? Now, in spite of the fact that my mother has the hideous attitude that she does, she DOES tolerate Memory Care. She eats with the other residents and does the activities, etc. She just complains 24/7, that's her nature. There are quite a few residents who have milder dementia who reside in her place, by the way, she just chooses to associate herself with the more advanced cases and then complain. A person does not have to be 'very bad' in order to go into a Memory Care ALF, either............you will find all levels of dementia & ALZ in Memory Care. Some sleep in chairs all day, some power walk laps around the perimeter all day............it varies.

So my suggestion to you is to find an ALF that has a Memory Care as part of the services. Speak to the intake coordinator and see what THAT person has to tell you once they do an evaluation of your sister. 2.5 years is quite a while to be living in managed care. Speak to an elder care attorney in the meantime and see what s/he tells you about Medicaid and how your sister can qualify for benefits; some states have Miller trusts for those who make too much to qualify, and that's the go-around to get benefits. Only an EC lawyer will be able to give you the 411 on all of it.

Just know that your sister is too advanced for IL right now and is struggling; don't let cost be a barrier to placing her where she will do best. Again 2.5 years of private pay is still quite a long time.

Wishing you the best of luck with a difficult decision

She definitely is depressed and sounds like you are her only family. Can she live with you and share expenses, and have a care person come in to help? If not, maybe you need to look for a place that is CCRC where she could be transferred to more care as needed and still be in the same place. Being alone is only going to matters worse. At least she has got you for help. Other elderly persons are all alone. Bring your sister to your house for lunch/dinner. Take her out for ride. Go shopping. Do anything where you could start a dialogue with her to figure out where does she want to go from here.

Let me answer this from a personal basis. I will be 88 (but with it l00%). I am here because I can't walk but I still drive (safely). I take care of my affairs 99.9% and still work two jobs, learn daily, have hobbies and a kitty, take care of all of my personal affairs. I can't stand this environment - old, feeble, dementia, uninteresting people, etc. So, by choice, I stay by myself and immerse myself in all kinds of things in my room and love it. I will not spend time with people or surroundings that do NOT stimulate my mind, offer challenges, and are interesting and productive. Not enough hours in the day. Being alone, I am content and accomplish so much and I am so much more at peace. I know I have no place to go - I am stuck - but this is my choice and it is great for me. It is true - activities in these places are for grammar school age kids - not for me. It could be that due to pain, no interesting activities, being alone just might be the best choice for her. If she has dementia, this could be causing some problems and I don't know how to answer that issue. Please don't force her to interact if she is not happy doing so - leave her in peace. As to assisted living, SOME places will take you and keep you as a paid person for a certain time period, usually three years, and then will subsidize your rent for the balances. Medicaid only applies if you are in a nursing home. Start investigating options now as it takes time - there are solutions but you have to search for them.

Yes, she is "bad enough" for memory care. Folks in MC aren't are staring off into space and non-functional. Many of them seem pretty normal, but like your sister, there are some issues that prevent them from functioning independently. That's why she's locked herself in her room -- she absolutely doesn't belong in Independent Living.

Once her money is depleted, she will be applying for NH care. She may be eligible for a NH medicaid bed at that time, or may have enough to be self pay at a NH. The facility will be aware of her money and monthly income to help her apply for appropriate program.

She may not really be 'independent' living. Sounds like she needs more care than that. I would ask if IL or AL would send a person to her room to take her to physical therapy sessions. You may also be able to get her doctor to order home-health people who would send therapists to her via Medicare payment. And, perhaps weekly nursing visits. Sounds like she needs to be engaged rather than waiting on her to engage herself. If you can get in to the facility, find out if you could order a meal and eat with her in the dining area. Sometimes people don't feel comfortable going alone into a group. A more extroverted person might be able to get her over the hump

Sorry as I didn't read all the responses and may possibly repeat some things.
I experienced this problem over and over for the nearly 20 years I worked as a nurse supervisor in both AL and memory care. Does her facility have an "ambassador" program? This is someone on campus who can spend time with her (encourage her to participate in meals and activities) until hired help can be found. Finding our reason(s) for remaining motivated when we get into our senior years is perhaps the hardest thing any of us will ever do. With age we will all require a different level of "attention" and your sister is tipping the scale in this area. While my prayer is for her to have longevity, my greater concern is for her to enjoy what time she has remaining. It's all about quality, not quantity. During my career, I performed my own personal assesssment for each admission which concentrated on 5 hallmark areas. Nutrition, Hydration, Exercise, Rest and Stress Management. Under stress management is found pain/discomfort. My greatest concern is for your sister to be pain free. She will never move on (and will only digress further) until she is physically able to do so. Opioids may address her pain but have awful side affects--mostly constipation! Tramadol (Ultram) is better but can make her a bit loopey. Certain individuals can balance their depression through exercise but with your sister, she can hardly move so we have to start with baby steps. My recommendation is for her to try CBD oil, a warm soak in a bath with essential oils followed by a gentle foot massage twice a week--to start. Spending quality time with her is what she needs most at this point in time. Cannabis perscribing physicians can be found online and will be able to recommend optimal dosages. Use some of her resources from the sale of the house to hire a caregiver. Not just any caregiver but the right fit for you and her. This is where you'll really have to do your homework; by interviewing for the right person. Someone who she can truly relate to. It will be a lot of work but when you land the right person, it will be well worth it! This caregiver will be someone your sister will REALLY enjoy spending time with, talking to and laughing with. For my seniors who had no remaining friends or family, I always used Reader's Digests' mantra "laughter is the best medicine." Not just reading jokes to them but utilizing other resources like You Tube. Look for Art Linkletters "kids say the darndest things" and Hollywood Squares with Paul Lynn and countless animal videos. For the moment--as long as she's laughing---nothing else will matter and she will begin to regain her quality of life.
I feel your sister stands a good chance of remaining in IL as long as she recieves the attention she needs which will result in her willingness to thrive.

I wish you well and will keep you both in my prayers.

My Best,
Ken

First, I’m sorry you’re experiencing this difficult situation with Your sister. So hard to watch/fix. Is your mom elderly? Has she been looked at for depression? Is she in hospice? Moves are tough on high functioning young people; it’s amplified in older folks, esp. those with dementia or AZ. Sis may be trying to assume some sort of control and establish some sort of routine again. Probably very unsettled and anxious which manifests in many ways. What she’s doing isn’t unusual-hard to watch though. Is she unwell, because at some point she will “opt out” so to speak and leave on her terms, but that doesn’t have to be the case now. Are you able to visit or are lockdowns still in place? I watched more people quit and die at my dad’s facility over depression and isolation than due to their cognitive diseases or physical ailments. ( I’m not a Dr, but the decline was frighteningly fast.) If you can go in, perhaps you can start an activity she can look forward to each week? Consider putting interesting things outside her window if possible: flowers, bird feeders, etc... happy things!! Does she enjoy music, reading or a hobby? Good luck, hugs to you and Your sister

First thought
Could she go back to her home with in home care? Would she be happier there? What's the cost difference?

Second thought
If staying where she is, could she have Physical therapy? This would provide having her get out of her room and some socialization.

Third thought
Can you come to join her for meals? I know it might not be allowed, due to covid. When my Mom was in nursing home rehabilitation, she would not want to go to the dining room. I would take her to "find friends " and conversation. When I was not there, staff would take her.

Earlier in life Mom was VERY social, active and outgoing. A change in her health changed that.
Mom also did not attend any activities. Frankly, I didn't find them stimulating, either. My Mom's mind is still good. If your sister's mind is still good too, the activities may not be suitable for her either.

It sounds like your sister is depressed. I hope that she is able to cope better. Now that it is Spring, being able to get out may help her.

Best wishes to you both.

And during the pandemic, many senior facilities have curtailed the activities and visits to keep social distancing. Many people are depressed and feel isolated in their homes. My mother, who loved to join activities at her peak stopped doing this as her mind declined. Thinking back about it, perhaps she wasn't understanding what the others were saying, was having difficulty communicating, and was no longer up to it. Make arrangements for Assisted Living or Memory Care. It may be coming soon.

It sounds as though she definitely needs assisted living. I am assuming, since you decided this was a move that needed to be made, that she was not getting out of her house a whole lot either?
You don't give us an age. I know that my brother, not overly social, did have a bit of adjustment in ALF where he had two rooms. He gradually did get out and socialize a bit more, and take part in things. There may be some adjustment.
And again, you could be correct. She may have lost interest in living a life that consists after one loss after another. This is normal for some people. They honestly tire of it all, and would prefer it were over. It isn't an unreasonable option. You say that she is on antidepressants. Do let the doc know that this particular medication doesn't seem to work for her. There are other options. But eventually you yourself may have to accept that this is where she is at now, and that things may not change a lot. I am so sorry, and wish you the best.

Taking that first step to sit at a table for a meal or go on an activity with strangers is a challenge for most people — even harder with pain, mobility issues and cognitive decline. If you are able, join her for meals in the dining room and help her to make some friends. Once she is comfortable at meals, activities may come. If you are unable to be there, you could see if there is a consistent volunteer who could help her for a few days. Having a physio therapist visit would help her get moving. When you visit, try getting her out of her room, even if it is just to walk down the hall, sit outside or in the lobby for your visit — anywhere she can be around people. Finally, regardless of what stage in life you are at, people need purpose. Get her a plant she can care for and watch grow or a beta fish in a 2 gallon tank. With my Mom, they had an activity room we could book for Sunday dinner. My sister cooked dinner for Mom or we would order takeout. When the room was booked we were given a separate table in a corner of the dining room. Regular Sunday dinner was something for Mom to look forward to every week. Hope things work out for your sister. Things are much tougher now with COVID and visitation limitations. Hopefully once everyone is vaccinated, things will improve. Take care.

I find this discussion very interesting. I’m in a somewhat similar position. My husband has Parkinson’s dementia. No memory problems, but difficulty communicating and a now elaborate pattern of delusions and paranoid thinking that essentially keep him completely tied up with agoraphobia, extreme self consciousness and fear. He was not a very social guy anyway. Having decided not to continue to live with him at home, I secured a nice apartment for him in independent living, the aids visit him four times a day for meds, and they try to encourage him to go down for meals but if he can’t, which is most of the time, he eats in his room. Right now visitors aren’t allowed in the dining room because of Covid, but when I can join him for meals, that might help. We’re trying to find the right meds for him—he’s on everything—but I don’t know if his situation will change significantly. The reasons I’m not at this point moving him into assisted living or memory care are complicated. On good days (or good hours) he’s way too lucid for memory care. As far as assisted living, I’m not convinced that there’s a facility in my area that is going to provide a lot more than what he’s getting now. I would just be paying for things I don’t need like dressing him or bathing him. He’s perfectly capable of doing those things for himself. I also have to take into consideration the reality of the financials here. He’s in a really nice independent living residence, with very good meal service, nice aids (whom he likes), a visiting psychiatric nurse (via Medicare) twice a week. I’m paying thousands less each month then I would if he were in assisted-living. If I were truly convinced that the +2k per month deferential in assisted-living would give him a much better quality of life I would make that move. I’m saving his money for memory care, which I expect he’ll need. I’ve talked to the management and they tell me they have a many residents living through hospice at the facility who manage with home aids and visiting nurses. Until he develops hallucinations or disruptive behavior, I’m going to keep him there. He has a better shot, I think, of being brought to more normal existence if he stays there and I can get to participate in some of the activities at the IL. I visit almost every day—it takes heroic effort to even convince him to go on a walk around the building or much less outside for five minutes. I get it—he doesn’t want to be there but knows I can’t live with him (we were having problems before his illness). There are no perfect solutions.

Sounds as if she has given up. And just wants to sleep and never wake up. I'm sure you have told her if she doesn't walk she will lose what mobility she has. Antidepressants are not the cure all. She must want to get better.keep visiting,calling her, encourage her, support her. And the staff needs to do the same..it took me over 10 years to come out of my depression. The biggest thing is she MUST want to get better, she is like the little baby elephant who got stuck in the mud and mama was trying to move the mud and aunts and uncles then a whole village of men came to help but the baby elephant had to take the steps he had to accept the help and walk out of the mud. Noone could take the steps for the baby the baby had to take the steps. So as we say she is stuck in the mud. Keep putting out the help but she has to accept the help and grab onto the. Branch and take the steps.. Good luck, may your sister get better quickly. God bless

You don't say how social she was in the past. Some people just don't want to socialize or due to a hearing deficit or needing to be near her bathroom or other impairment find it difficult. The seasons are changing and it's getting much nicer outdoors. Does IL have a courtyard or porch where residents can congregate? Sometimes, fresh air and a little sunshine or a ride in the car can be a great motivator. My mom was an introvert. I found that taking her out for lunch provided good physical activity for her. When either of my parents were reticent about participating in social events in facility, I did offer to go with them once or twice to get them started. You don't mention if her IL residents have been vaccinated for Covid or if you have, but when that has happened, more opportunities will open up. You should definitely get legal advice from a specialist in elder law. Proper documentation of your payments and expectation to be reimbursed must be made to prevent the appearance of gifting if she does end up requiring Long-Term Care through Medicaid.

If she goes to a nursing home, the facility will seize all of her assets and income. It sounds like there is where she should be, and you may have issues with selling her property and keeping the money--Medicaid will call that "gifting" as there is a five-year look-back law. Assisted living only goes so far in terms of degree of care. What I am saying she may decline to the point you will have to change her diapers, bathe her, and even manage her bowels which means cleaning up that mess. It does not take much inactivity to become bedbound, which is permanent when it does happen. A person can live for years and years bedbound, and I hope you realize the cost of diapers is about a dollar a piece and you will be changing your sister about 5 or 6 times a day..not to forget a box of gloves has 50 pairs and that is about $10 a box..and the cost of lotions, ointments, bedbath products (rinseless--a small bottle about $10 a piece and that goes fast). And endless wounds -- cost of dressings are NOT cheap. Baby wipes are also VERY expensive. She will become a full-time job, and you never lived until you have to give her enemas and/or laxatives because after so many days without a bowel movement she can get impacted and you will be in a REAL mess. No assisted-living facility will do that and I'm telling it like it is. 15 years caring for my mom--BEEN THERE..DONE THAT.

You may want to see an eldercare attorney for estate planning and get her Medicaid-ready. I presume you are her POA? If not she needs one. The way she is headed you can practically count on her becoming bed bound.

Now I kept my mom going and we went to the park and walked a quarter of a mile for five years DAILY until she forgot how to stand so she was only bed bound for 2-1/2 months and died age 90 due to the complications of insulin-dependent diabetes and kidney and liver failure due to 10 years type 3 kidney disease--another result of diabetes. She died with perfect skin--not a single wound. I got a feeding tube in mom because I did not want her dying of dehydration--and that feeding tube took TONS of care but I never had a problem with it. Mom was very comfortable as she literally forgot how to chew and swallow food. Mom was the center of my life for MANY years so when she died it left me a basket case and now I'm working and trying to get my grad degree. Mom is in a much better place and safe for eternity. I miss her everyday but we all die and Alzheimer's did not kill mom--God did it with her diabetes, liver and kidney disease. Still I think her living to be 90 with insulin-dependent diabetes I took good care of her. So I have no reason to feel guilty over nothing.

I took care of mom by myself.

I'm not sure what kind of difference you imagine an AL or memory care would make for her, if she chooses not to participate they won't make any more effort to include her than the place she is now. Aside from making sure she has a medical evaluation to ensure she is properly treated for depression or any other cognitive or physical problem I would leave her where she is, they will most certainly tell you if/when they feel she needs a higher level of care (this usually means difficult continence care and behavioural issues).

I would suggest that she probably needs physical therapy and a doctor managing her pain. When people hurt, they don't move. She may need family to visit and "encourage" her to be more mobile and interactive. It can also take a while for somebody with dementia to feel comfortable in new surroundings with new routines. The challenge helping her engage in the new routines until they become her new normal.

If she has meals delivered to her room, a dining hall and a med manager, then she is in Assisted Living. Independent living is an apartment complex dedicated to seniors over 62 (usually) who must be able to care for themselves independently.. cooking, cleaning, laundry, trash removal out of their apartment to a designated location.

Contact the facility to clarify, the doctor with your concerns. I'd push for thorough evaluation. Check for a physiatrist or geriatric neuropsychiatrist. She may even be ready for palliative care to help with symptom control and emotional support.

Best of luck on this difficult journey.

She definitely sounds like less of an IL resident and more of an AL resident. I am surprised with her dementia they let her into IL as usually they will do a cognitive assessment. She probably needs more eyes on her. Where my dad was in AL they wouldn’t allow you to have all your meals in your room...only if you were sick. Getting them out to meals is part of an activity and socializing.
Sure sounds like depression with constant sleeping, no socializing and waiting to die. Is she on anything for depression?

This is a rough time to be in any kind of care center, for sure.

My mom lives with my YB but she has gotten very depressed over the past year and at first, wasn't ALLOWED out of the house, now she is and the whole thought of just walking outside is beyond her scope of capability.

She can barely walk, not that she did a lot before, but I don't think she takes 500 steps in a day.

She is grateful she was 'safe' during covid, but it scared her so much. All doom and gloom, all the time.

If she'd agree to a psych eval, I think, even at 90, she'd do well on an antidepressant and some talk therapy. She's still so angry at people who have passed on or are still here, but whom she can't stand--a lot of VERY pent up anger that I'd like to see her release---

And yes, her mild dementia has gotten noticeably worse.