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Hello, my mom is 86, dad is 84. Mom has early cognitive decline, as of yet undiagnosed but could be lewy body disease. She takes care of herself, remains active and wants to stay social, but has a hard time expressing herself and can get confused. My dad has heart failure, recent pacemaker, very low engergy, history of depression and fairly weak/deconditioned. All he really wants to do is sleep. PT/OT come to home, but he very seldom does the exercises. Says he wants to, but then doesn't do them. No recent falls, uses a walker or a cane.
I'm trying to decide on whether they should do to "independent" living (from home), with added on cares, or go right into assisted living. The assisted living place is next door to the indpendent living place, so they could eventually transfer there. I want as much engagement for my mom as possible, since she is essentially "alone" with my dad who sleeps so much. I will continue to help with meds. Both communities are less than 10 mins from our house. They don't really want to go to either, but are warming up to the idea. There are pluses and minuses to each place (they are both in "Brookdale" communities, with overall good, but mixed reputations. The option for an eventual Medicaid spend down is part of the selection process)
Anyone have any insights? Thanks....

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Your mom may have a difficult time emotionally moving to independent living and then in a short time, moving to assisted living. Is the assisted living facility one that gives her a fair amount of leeway in activities? She & I are almost in the same boat: my husband is semi-invalid ("can" walk with walker to the bathroom) but doesn't feel any urges, so we TRY to keep the bed, his chair, and clothing dry and clean. We have a visiting nurse stop for 20 min. 2x week and a Phy.Th. coming once a week. His aphesia prevents most conversations and his dementia gets everything all mixed up when he does say something legibly. I am 84 with a pacemaker as well as a watchman, and also have debilitating arthritis through my body, so must exercise regularly. I maintain the house, the yard & gardens, the shopping, cooking, cleaning, all finances, appointments and all of Tom. I've had to stop my own tiny business, many social engagements, etc. and I'm always dead tired. But I'm still very lively; when he leaves, I probably should sell the house and trade my good cooking for institutional food cooked for me. It is getting harder and harder for me to do physical work. I'm a museum awarded artist and a licensed interior architect, and occasionally get jobs in both fields. I can't imagine being in assisted living, but I know I'll be needing it very soon. My spouse needs specialized care in a residence with directors and staff very knowledgeable of dementia diseases, which I do not have, nor does a less costly typical assisted living residence. I'm sorry I can't give you a solution for your folks, but perhaps knowing their situation is not too uncommon will alleviate some of your own stress. IN TIME, everything always works out; all we can do is what we assume might be best.
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Reply to SarahWhite
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I would skip the independent living and go right to Assisted Living for your parents. It will be less stressful than making another move soon, and your mother can still enjoy independent living and socializing in Assisted Living. The supports will be in place for your dad.
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Reply to CaringWifeAZ
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I would have your dads iron levels checked, I use lentil soup for my dad when he was sleeping all the time, now he has perked up, and goes out to eat with us every week, an looks forward to going.
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Reply to Fiorenza
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I would suggest the ALF (assisted living facility) and keep your parents together. While there, your parents would each have a personalized service plan that lays out what cares they are needing (often this is dictates the cost). Since you are involved, you could remain as much involvement you want and depending on what all you do, that could save some money towards the overall cost of things. (example: if you are helping with medications, they likely wouldn't need medication services and/or if they were able to get a medication dispensing device- maybe you'd only need someone to check to make sure they took their meds from the device).

If the community is set up to be a GUIDE facility (or the medical director is a GUIDE provider), you could get some added caregiving services in which could potentially save some dollars too. GUIDE is a CMS program that provides 72hrs of covered caregiving services a year along with other supports. The program is for those with dementia that aren't in a long term care setting. You'd have to have your mom officially diagnosed with dementia, she would need to have Medicare part A and B, and the ALF has to be apart of it (which seems like most places are). 72hours isn't a lot of caregiving hours- breaks down to about 6hrs/month if used consistently each month. However- you could reserve that for times where maybe you're out of town and you need someone to come in a few hours a day to do medications and other tasks you'd normally do for them. That would be free, and would help protect your parents personal funds a little while longer.

I would also truly consider getting that diagnosis for your mom because depending on how advanced things are, there are good infusion therapies that help depending on the type of dementia. But if it is Lewy Body, you might want to discuss with the ALF what safe guards they have in place when/if that advances to a stage that has some challenging symptoms.
If they aren't equipped for that next stage of that, you might have to consider an ALF in which is a memory care (if a memory care- the GUIDE model is no longer an option).

Quite a bit of information there, but you sound like you're doing good investigations and are looking at the big picture.
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Reply to Natasha4Seniors
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I agree with all the tips given by others if you keep them in their home and about making sure POA etc is in order. If you decide to move them, go with a place that’s convenient for you and offers the most graduated steps of care possible all the way through the end of life… including a locked memory unit if possible. It will become increasingly difficult to move them and especially difficult if you have to have them in geographically separated homes, for example if your mom started to wander and you had to move her somewhere else away from your dad. My SIL and I had to move my DH’s parents so many times over the years as their needs changed. By the last two moves we were kicking ourselves for not starting with the end in mind. Ideally you’d find a place where they can graduate to the next level of care all the way through the end. Additionally sometimes their needs change quickly and if a move is needed urgently, it can be challenging to find a place that can accept two at the same time.
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Reply to HonorAble
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Birdlo— I Just wanted to say it sounds like you are really organized, clear-eyed, and realistic, and calm about all this. You have your stuff together. They are lucky to have you.

The facility you choose will definitely assess them and make recommendations about their needs. Like others on this thread, based on what you have shared I would also vote AL.
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Reply to Suzy23
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Your reply to me and along with lealonnie 1's comments I would look for a facility that does have Memory Care. It may not be needed now and a locked facility is not always necessary but if it is trying to move someone at that stage is difficult and most facilities that do accept Medicaid want the resident to be private pay for a while before medicaid kicks in.
A move is always difficult and the fewer times that has to happen it is better for all involved...including you
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Reply to Grandma1954
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They both seem in that sweet spot for IL. However dad and have to make sure they go down to dinner at the right time. Otherwise it might be better for AL. Since they are semi understanding about this move, start going by yourself to 2 or 3 places on your own. The marketer can determine if they are a good fit. Once you find one, then take them over for a visit. You can ask the facility if you all could go for lunch. Usually the maketer will ensure that a current resident sits down at your table for questions. When my mom was in the early stages, she went for a lunch. She was always social so really enjoyed giving tours of her apartment until her memory issues got worse.
I run a support group and occasionally I take the entire group to visit places. We as a group bring a bunch of written questions. At the last two times. My next door neighbor( no memory issues but has heart disease) came and decided IL was right for him. Another couple of women visited a continuoum of care and immediately decided to put in on the wait list. They will share the rent and entrance fees..
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Reply to MACinCT
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Right into assisted living. The fewer times they move, the less traumatizing, and reading the handwriting on the wall, your mom is headed for memory care, which will be on the grounds as well. If you go the route of independent living at home, someone has to manage it. Your parents aren't capable, and even if they assure you that they are, they have no idea what's involved. It's a full-time job to manage, the learning curve is steep, and you will burn out fairly fast. Also, finding and keeping a team of caregivers to take care of two elders with serious issues would be tough. One caregiver is not enough. You'd need someone there 24/7, relief caregivers, and more. How do I know? I've done it. Never again.

My mom was in a Brookdale community AL, and my friend moved to a Brookdale community a couple of months ago. Mom was there for five years. No complaints from either. Of course, you will always find someone who is complaining if you look hard enough, especially when dealing with people who are in eldercare. Ignore it. Some of them love the attention they get by telling others that the place served them fried iguanas yesterday and Mookie from down the hall keeps stealing their toothpaste. Who cares? I mean, really?

I suggest that you take the lead on this and don't pay much attention to mom, whose brain may be broken enough that she may not be able to make rational decisions. She's confused, maybe more than you realize. Don't pay attention to dad, either. It doesn't matter where he sleeps as long as he is comfortable. You're now the parent, strange as it may seem.

They are lucky to have you to advocate for them. I hope it goes well.
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Reply to Fawnby
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Brookdale is a big corporate nickel and dime to death kind of establishment that was SO bad, I had to get my parents out of there very quickly before the staff killed them!! 😳 If Brookdale accepts medicaid residents I'll eat my hat, so it's likely a moot point anyway.

Do your due diligence and place your parents in an AL where the RESIDENTS give the place good reviews. Ask THEM how they enjoy living there, that's what I did, and found my folks a wonderful AL that way. But make sure it has a Memory Care attached or you'll wind up moving them at some point, most likely.

Best of luck to you.
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Reply to lealonnie1
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Some good suggestions from all of your replies, thank you. We have toured so many places, so definitely have done my research. It all comes down to which accept the medicaid spend down, eventually. Neurologist appointment is in October, with some more testing I assume, and then a diagnosis. We're on the right path. I think I may wait for the diagnosis, and then the right room at the assisted living in the meantime. Thank you all for your insights.
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Reply to birdlo
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You need to have Mom diagnoised. Lewy body is one of the worst of the Dementias. It can cause aggression. It also gets mixed up with Parkinsons. And you must know which one because of the medication given. She needs to see a Neurologist.

I would say an Assisted Living. Neither can care for each other. They will have 24/7 around the clock care. You will have some weight taken off your shoulders.
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Reply to JoAnn29
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I think that AL would be better for your parents.
1. I think mom would be more engaged.
2. Sounds like dad needs help, maybe a bit more than you suspect.
3. With the dementia you say mom has (diagnosed or not) a move may be more difficult for mom and she may have a bit of a setback cognitively so she may need AL until she adjusts.

Does either facility also have Memory Care? That may not be that far off timewise if mom declines.
And be sure both accept Medicaid if that is a possibility.

If remaining at home is an option it can be ideal IF...
They both accept the help coming into the house that they need.
The house is set up so that they can safely remain there. (no stairs, low or no carpeting, wide halls in case there is need for Walkers or Wheelchairs, at least 1 accessible bathroom that can fit a walker, wheelchair and at least 2 people...the caregiver and a parent...
And while caregiver at this time might be needed for just daytime there may be a time when they will need care 24/7/365 when that happens is that in the budget?
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Reply to Grandma1954
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birdlo Sep 17, 2026
unfortunately no memory care, but evidently they are decently well equipped to handle dementia issues (but not if locked facility is needed). Not sure what we'll do then... And no, we wouldn't be able to sustain at home care once needs included night times.
thanks for your ideas
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I well remember the long road of heart failure with my dad. It came with advancing leg weakness that many rounds of PT never helped. Also had the home exercises that never happened despite good intentions. The falls began and became common. Keep in mind today is the best your parents will ever be, the sad decline will march on incrementally, and sometimes in jolts forward. Accept that happiness for them is likely an impossible dream. Socializing is far more likely in assisted living as they’re isolated in their home. We pretty much forced my dad took a hire a helper, she was great, but that plan was rapidly becoming not enough. Had he lived much longer we would have needed to change the plan to assisted living. In your shoes, I’d go straight to assisted living, skip the steps of “trying to make it work” by pacifying their wants (what I did by hiring the helper) and accept that no plan is without flaws. I wish you and your parents much peace
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Reply to Daughterof1930
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birdlo Sep 17, 2026
yes, i imagine the falls are coming, sooner or later. thanks for your comment and kind words
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First and foremost, you won't be getting them to do anything unless you (or someone) is their PoA. If they don't have their legal ducks in a row this needs to happen asap. The bar for mental "capacity" is very low and is actually assessed by the attorney, who will do this with each of them privately when they come for their initial meeting. They also are making sure the elder is not being coerced. I strongly suggest you encourage them to make the PoA durable (so without any conditions for the authority to be triggered).

After they have their PoA assigned THEN you take them for medical exams where the goal specifically is cognitive testing and evaluation so that it is in their medical records.

I don't think your parents are candidates for IL. This would be no different than if they lived in any random apartment complex. AL will get them the help and encouragement they need on a daily basis -- especially for your Mom. But you cannot project what you think your Mom should be wanting or doing for herself ("engagement"). When we transitioned my MIL into a very excellent facility with lots of offerings, she wouldn't participate for years until the staff finally coaxed her to start eating dinner with others, and then eventually attended activities and events. Go into this with no expectations.

As for Brookdale... I don't have personal experience with for-profit facilities but please know there may be other excellent non-profit options in your area, even ones that may be a slightly longer drive, but worth it. My MIL was in one run by Presbyterian Homes, so it was faith-based. Ebenezer is another one is you're in the upper midwest. Look for ones run by the Catholic Church. Most of the time these facilities do not require residents to share the same faith, or any faith at all, but they see the care as a mission rather than a business model.

Join Nextdoor.com and ask for facility recommendations -- you will get more current and accurate input to help you make a decision.

You can consider hiring a companion aid to help both your Mom and Dad first. I've done this with a lot of success, until my elders needed a hirer level of daily care (like medical).

Most of all, remember to keep your own self a priority if you intend to manage care for 3 people (and you are one of the 3)!
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Reply to Geaton777
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birdlo Sep 17, 2026
I do have PoA in place, so that's good. Will try nextdoor for info... thanks for the suggestions
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Keep that open dialogue going with them..
preparation is the key in whichever direction you take..
do talk to the residents and their family members to see how they line the facility..
do take a tour of the places with your mom and they will give you lunch abd answer any questions..
if you're not in a hurry visit mire places so you can compare..,
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Reply to MAYDAY
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If you do independent living with care in-home, make sure you have well enough workmen compensation insurance.
Edith and husband lost their home and their life savings because of that.
In-home care is very expensive where we lived. Please take that into consideration and look into all your options
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Reply to MAYDAY
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My friend had some similar experience.
From what I interpreted, it seems the more you move them the more confusing it can be.
I know you said that they will in the same facility with a different layer of care and that's very important. How much CARE do they actually need and you may also want to hire a personal caregiver for a couple days a week in the facility where will be living when the time comes?.
These are things to think about how many times do you want to actually move them from one facility to the other? Do you jump the first option?
What quality of Medicaid step down is there from one facility to the other??
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Reply to MAYDAY
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birdlo Sep 17, 2026
The extra move is definitely a concern. That would suggest I should just start them off in assisted living. As far as care, they need meals, less/no housework, and they need medication assistance (which I currently provide and can continue to provide with reminders and more elaborate med boxes). Not needing bathing/dressing cares...yet. The medicaid step down is allowed in the asssited living after they have paid for 2 years of private pay.
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correction, mom is 84, dad is 86!
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