My parents just moved into assisted living but they still need my help all the time almost all day and not sure how to continue?

They need Memory Care which provides a higher level of care with more aides per resident than AL. Stroke patients usually have more strokes and/or TIAs, worsening the Dementia, not improving it, as my mother did. When she could no longer function properly in AL, I segued her into MC where her world was shrunken down and a lot easier for her to manage. It's not about "want" but about "need".

I still had 100 things to do for her, including all bill paying and making sure her meds were approved by me, talking with doctors, bringing over endless supplies, clothes, toiletries snacks etc. I ordered what I could on Amazon to be shipped, like Depends, and drove the rest over. Laundry in AL and MC should be done by staff, not family. If it's not done perfectly, oh well, that's something to overlook.

I had both parents to manage in IL and AL for 4 years before dad died of a brain tumor. It's not easy no matter where they live, just easiER in managed care than in our homes. It's still a huge amount of work though, I know.

Best of luck with a difficult situation.

I think the key is where you wrote: “we are used to them having that one on one care at home which a facility can't provide.” We — or they?

I know one case of a 90-something person in AL who refused MC even though she needs or expects the kind of all-day assistance you mention with fetching items, turning on TV, etc. She now has a full-time caregiver who lives with her in the AL. Yes, I’m sure it’s very expensive.

I urge you to find a solution that does NOT involve you staying with them all day, every day in their AL. The longer you do that, the more I worry they will come to think of it as normal and necessary. Don’t sacrifice all your waking hours.

Either aides + AL or MC seem to be their options. Good luck!

Assisted living does not mean one to one care . They need to adjust to that , it is what it is . That is why there is a call button . There really is no other way unless you keep hiring one to one staff to come in .

Also why hang on to the house ? Once your parents adjust , Sell it , tell your parents the house is a burden on you . Let the facilty do the laundry . Don’t let your parents run you ragged . They expect things to be as they were at home . You can’t keep providing that level of assistance .

And let your parents fetch their own glasses , toothbrush etc . If they can not do these simple things on their own either by using a walker or self propelling in a wheelchair then they do not belong in assisted living . They would need a higher level of care .

I suggest you back off , go back to your job , and let them adjust to the new reality . If a one on one is too expensive , they need to adjust to that . They are used to being waited on when perhaps they really need to do some simple things themselves . You should not be fetching things . They also need to use the call button and rely on staff .

Also have the facility encourage them to go to activities outside their room ,

I would speak with the administration at the facility where Mom and Dad are.
If you are being required daily then they really are not in the right placement category.
The facility knows your mom and dad and knows what is available to them and to you for their care.
I would discuss all this by making an appointment with the admin.

If you are POA and I am assuming you are, I think it is wise now to take over bill paying and other executive functioning. Bills should come to you, and you will be keeping records, handling all banking, supplying Mom and Dad with a small spending account. This is safest for them. This will take about 1/2 year to get up and running smoothly as each entity, bank and so on, will have a different set of hoops for you to jump through. Meanwhile you cannot allow them in a facility where all meals are not already provided. There will be little shopping and etc.

This is a big adjustment. Expect it to take a solid year for you and for them.
I wish you the very best.

Sell the house now. Why wait? They're never going back there, and the money from the house can be used for the higher level of care that they need. A good realtor can help you with all the details so that you don't have to agonize over every little thing. A contractors' clean-out can help you send piles of their stuff to the dump, the thrift shop, or wherever. There is no need for you to be heavily involved in that very emotional task.

If you weren't there, mom and dad would most likely do for themselves or find someone else to do it for them. You're setting yourself up for a routine of slavery to demands that can only get more and more impossible to meet. And this is NOT worth losing your job! Don't quit. Stop jumping when your parents shout "frog!"

I wish you the best of luck in unsticking yourself from a sticky situation, which will only stay that way if you let it.

They very clearly require more care than the AL can provide. Unfortunately you and your siblings made a mistake by placing them there.

Start looking for good nursing homes for them. And hire more help in the meantime.

Did it ever occur to you that all the stress your 91 year old Mother was under "taking care of everything" was what could have caused her stroke?
People don't recover that easy (if at all) after a stroke. At 8 weeks, she's as good as she is going to get. Her days of running the show are over.

You said yourself before Thanksgiving it was hard enough taking care of 95 year old Dad. How do you think you Mom managed all the stress she had doing it at 91?

Now you have them in an AL facility, yet are still with them full time, every day. Now your stress has doubled...time to cut it way back, or you could be next. Who will run over and take care of you (and every detail, every day) when you approach your 90s?

Both parents now need a higher level of care. Stop fighting that reality. Get them what they need, not what they want. Then pull back and let them get what they are paying for. Stop hovering over them, fetching all day. Let them adjust, or they never will.
Good luck in this difficult situation.

I have answered a couple of comments above, but just want to add that I think many of us do get it. There is no easy answer, but it seems this situation may be too stressful and hard for mother after her stroke. That can be fixed for now with extra private duty helpers or if Constance works part time. It's so hard to see parents in this sort of situation where they have diminished capacity and they are struggling to adjust. They are definitely not spoiled, but maybe overly challenged by this environment. Also, the AL is not doing what they promised and this is not your fault, but I urge you to become the squeaky wheel (politely) to remind them of their promises. But frankly, every 2 hours is probably not enough. I wish you the best as you deal with this @ConstanceS!!

The right Adult Family Home would deal with all of this while allowing them to continue with their daily activities with dignity. They could have separate rooms or shared rooms. Most Adult Family homes smaller with full time live in caregivers, with like 4-8 residents for one house. Several in my area bought two adjoining homes, turned it into a place for 16 residents. They vary in cost, services, approaches, specialties but all regulated by the state. Make sure to pick one that will use a medicaid spenddown as most do, and get it in writing. Try to find ones that know how to deal with married couples in their 90's with mutual care needs. Care needs at that age only increase so assisted living while it seems "fun" the care plan costs will also increase with every increase in the need of care. Often the care more customized in an AFH due to smaller size. Also rarely do they both die on the same day or at same time so when things like hospice or death happens, they stay in the AFH where they have grown comfortable. It does not sound like anyone exiting, sundowning in extreme or highly agitated but in a small private AFH and Memory Care units, people get evicted for stage 6 dementia sundowning agitation or anxiety (violence or hallucinations or high risk exits) as that puts everyone at risk. My experience with people in their 90's they don't have the energy for this and often much more peaceful about it. Also some SFH specialize in men with dementia in their 60's and 70's (often their caregivers big burly looking men) or women with senility in their 90's or the developmentally disabled in their 20's or 30's. I work in hospice outreach so have cold called every single community or AFH in my county. I feel like a religious fanatic going door to door sometimes as part of my job. My suggestion: I use my family gut feel: Would I put my mom or dad or family here? If my child needed to pick this place for me, would I want them to pick this place? I treat everyone like family only I don't have any personal involvement or connection other than helping them access eldercare hospice or palliative services.

Assisted living means just that, assisted. Short of nursing home level, seems the only solution for you is to hire a caregiver that will tend to your parent’s needs. That will get very, very expensive. I made the mistake of placing my beloved aunt in a beautiful assisted living facility and (she) ended up paying for everything they could not provide. When I realized she needed nursing level care, I had to give them 30 days notice that I was moving her…so she had to stay there during that period or if moved before then, was still responsible for the “rent” which would have meant paying 2 places.

Like you I have two parents in similar condition. Between everyone we had 7 hospitalizations followed by rehab. I have decided that nursing homes are a last ditch effort. It is indeed more stressful to have them in the nursing homes than to manage the situation myself with home care....which is expensive. I would rather spend down resources that way and know they are being treated with dignity than expose them to the nursing facilities. Nursing homes are not what they used to be and palliative care is not available. Best you can do is wrap around home care with ot, PT and speech therapy and a visiting nurse through home health. The only thing that is a problem is getting them to medical care since doctors do not do home visits and your only option is hospice which you are not ready for. That is what Medicare will do for you. I am stunned by what Medicare will pay nursing homes to do ....or claim they do....and what Medicare won't provide at home. When my mom was recently in a nursing home rehab facility I had to go there all the time while caring for Dad at home. I ended up having to take her out and rehospitallize her and then bring her home because she developed a infection which they were not treating and were messing up her meds. The whole time dad was in acute care and in hospital I had to sit on people to give him his meds properly. It is frustrating when they need help and you think the facility care will help because they have teams if people to do things. The reality is what Medicare budgets per patient is insufficient for what people in facility care need. Yes...it is exhausting and stressful and hard to go to work and come home to do the evening wrap and have no life on the weekends. I would rather just have one fight and know that they are receiving the medical treatment they were prescribed properly and manage the situation myself. It is sad that the American system locks away elders and basically euthanized them through neglect in nursing facilities. As far as I can tell the government and facilities care more about the cash they can get or save and not about human dignity. I have long given up on thinking that a nursing facility is there to help. As my daughter says I am going to move overseas myself when I am old. I would have done it myself but can't afford to care for them outside because Medicare does not provide any support for people overseas and I am still in prime working age. Great way to invest in American workforce productivity.

Is it possible in your area to find a facility that has several levels of care? Your mom could be in the assisted living part and your dad in memory care. They could see each other in the common room of the memory care branch or in his room, but return to their own rooms after the visits. Sounds a bit cruel to separate them, but it might actually help your mom recover better from her stroke to not have him to worry over. However, the expense might not make it possible even if you can find such a facility. I know they exist, but I also know they cost more and your parents would have to pay for the separate rooms. And then the facility would have to also accept medicaid if the sale of their house would not cover the expense for long. So sorry you have all this to figure out. Take breaks for your own well being. What is happening right now doesn't seem it will work short or long term for them or for you.

I have a friend who had a stroke 8 years ago. She was in her late 70s. She could not speak, tho’ did know what she was trying to say. After about 2 years of intense Speech Therapy, she was quite understandable. Physically, she is paralyzed on one side but did PT to the point she could get around the house. Admittedly, she has an able husband. My point being is that “8 weeks out is as good as it gets” may not be the case. Can the AL facility get Mom some of this therapy as needed?

You say they are not checked on every 2 hours as promised. If you are not getting what you/they are paying for, speak to the Administrator. Approach this from an angle of “I understand the shortage of caregivers ….but…… I can’t be here all day”. Try not to be too aggressive with Admin., tho’ I’m sure you could scream right now.

I suggest talking to an Elder Care lawyer re selling the house. This could involve huge capital gains tax, depending on your state of residence. Here in CA, one of the kids could live in it for 2 years and then sell. It’s complicated so really get professional advice.

All this from an 83 year old of sound mind with a husband with early dementia. We’ve had time to work thru this. For you it’s harder because of the suddenness of the breakdown.

it’s a huge adjustment for Mom. The AL really needs to get her into an activity or two so she doesn’t feel like a lump on a log.

All the best to you.

Why are you there all day? You say you could hire an aide/caregiver to be there during the days, but they wouldn't have much to do because the AL staff does all the hard work.
They will not be returning to their home. It is time to sell the house and pay for all the assistance and caregivers you can get to relieve the burden on you.
Your parents may not require as much as you are currently doing for them.
Back off a little and let the AL be their support system. When the AL can no longer meet all their needs, I'm sorry, but it is time for a nursing home.

Your mother's stroke caused permanent brain damage. The dead brain cells will not "recover". It is possible for someone to improve a bit post-stroke, with intensive physical therapy, speech therapy, and occupational therapy (re-learning how to perform activities of daily living). Everything gained from therapy is a Re-Learning, teaching the remaining healthy brain cells to perform new functions. What I'm saying is, your mother is unlikely to ever improve. She will not get back to her previous level of function. This is not temporary.

You need to make plans for their future care, taking into account how much you are able to continue to do for them. If you are already overwhelmed, this is not sustainable, and something must change.

This does not sound right. Your parents are living in assisted living to be assisted by a paid staff, not you. Please put your foot down. Yes, visit often. Don't take care of them or it is a big waste of money. You are not responsible for your parents care anymore.

My parents have 24/7 care at home and not a facility because that's what they chose and can pay for. My dad was in a facility after a stroke. He would hit the call button and they wouldn't come for 20-30 minutes if at all so his immobile self found another way to handle urinating - kleenex then dump on the floor.
I discovered at that moment that I would have to let go of many things AND know my parents would figure out how to cope and I could squawk a couple things at a time. As we were in the facility every day, we got more attention. But we (my mom and I) only stayed a couple hours (all mom could stand). Then we brought in private PT and that gave us more insight to what was needed and another advocate.
After 4 months we were able to bring him home and a different set of caregivers had to be trained. Now it is just my dad, 4 caregivers rotate for 24/7 schedule. I come in 2 weeks every month and suggest what I can. I live in a different state so separating is a little easier than if I lived in the same town.
Separate yourself, take lots of deep breaths, know that taking care of yourself is most important. When you take a step back you can see more clearly. And yes, it is about the little things - finding a place where the remote always goes, adding a little color with cards or ribbon, getting a friend from church or neighbor to visit for an hour each week, bring in favorite snack, call for help to come in when needed. Breathe!

Hello. You sound absolutely overwhelmed and I understand why. Your mom is 91 and dad 95. Why not sell their home now and pay for the full-time care they need now instead of waiting 2 years? That would give you the break you need. With their current money and the money from the house, that should get them the care they need.

Could you pay for additional caretaker shift in the early or middle part of the day to do some of that fetching, turning on TV/DVD, checking medicines etc. Three hours in the evening on "several days" is helpful, but ay not be enough.

I feel you! We are having a very similar experience with Assisted Living* for my parents. Wanted to keep them together. We were oversold on what the traditional side of AL could provide - everyone realized it pretty quickly and they moved (2nd time) to the memory unit. Still a lot to coordinate, but they get much more supervision. Ultimately they need nursing care, but no beds available, so we took this option. Hiring a care giver sounds like the right move. Also consider hiring a Care Manager to help you assess objectively, interface with admin, and find resources to support your wishes. Other commenters are making good observations and suggestions. Time to adjust is needed, and your mother needs time to heal also. All the best. You are not alone, by a long shot.
*I slept there for 10 days when they moved in because I could see they would not get enough attention to be safe or well on the "traditional" side!

Assisted Living communities are not meant to provide the level of care your parents need, despite what they said. Your mother is no longer in a familiar environment and her post-stroke deficits have become more apparent because of this.

It's time to take a step back and really look at your parents and understand what they need vs. what everyone wants. One of the hardest things for aged couples, and the children who manage their care, is to acknowledge when one of them needs more care and then taking the steps to provide that care, even when it means living separately. Your mom may or may not regain more cognitive function, but the fact that she can't remember to push the call button is, at the very least, a safety risk for her and your dad.

So, it's time to look at what options you have to get yourself untangled from the load you're carrying. First, have a direct conversation with the AL administration to see if they overstated their ability to care for your parents in the manner you want them cared for. If they admit they did, you need to find new living arrangements for your parents together or separate them. Bear in mind you might run into the same situation elsewhere.

Second, look at what needs to happen to sell the house to your parents' greatest advantage. They will not be going back there unless you find a way to afford 24/7 care for them. Why hold on to it, especially when the funds from the sale will definitely be needed down the road?

Lastly, as hard as it is to let go even a little, perhaps consider a little counseling for yourself. It might help you gain some perspective about your role. Also, some communities have services that help guide care managers (which you are) through a lot of the things you're dealing with. If not, there are also elder care companies that can guide you.

I hope you'll be proactive to resolve this for your parents and yourself so you can get a little relief.

Hi Constance,
There are so many off the cuff assumptions being made here about what's going on, and what to do about it.
For heaven's sake, your parents *just* moved into assisted living. Moving is incredibly stressful regardless of the circumstances. Everyone needs to expect things will be a bit chaotic while going through the normal adjustment period of getting things get unpacked and settled in the new place. This includes the staff getting to know your parents and adapting to the routine that they need.
Give it a week or so of being quasi available onsite and see if things improve before jumping to any conclusions about the facility, the appropriate level of care, and your mother's recovery from the stroke.
My husband has had 2 strokes. He is now 5 years from the last one - and he is still improving, but S-L-O-W-L-Y. The fastest post stroke recovery occurs during the first six months after the stroke with ongoing physical therapy, occupational therapy, and speech therapy. Medicare pays for this - make sure your mother's MD orders this. So don't assume she's already reached a recovery plateau, don't assume that her cognition won't improve, don't assume that parents need to move into MC or Skilled Nursing. Don't quit your job. Don't assume there will be more strokes or TIA's. There are new prescription medications available now that are miraculous preventing more strokes (Xarelto, Eliquis, etc). Ask your mother's MD about these.

Reassess things over the next month - give yourself some time to decompress and don't make any big decisions immediately.

I have a feeling that things aren't as dire as you fear! Maybe things are working out great but you can't see that yet.
If things aren't vastly improved within a few weeks, then you can move into Plan B.

Best wishes. Remain calm and carry on.

I think you need a meeting with their head !

ConstanceS: Something seems amiss if you're doing the assisting rather than the staff.

Just sell the house now. Why in the world are you keeping it? They are never going back there.

Seems your parents need to learn to ask for help from the aides at ALF. Every time they ask for non-urgent help, tell them to call the aide. For every issue you must deal with, make a note to deal with those on specific days/evenings of the week. The idea of having them in ALF is to take tasks off of you and allow you more time for your career and your personal life.

1. Ask administrative what services the IA Division provides.
- None provide 24/7 so you will have situations where your parents are not getting any / enough attention. You need to clarify what the services are. Staff is managing several / many clients / residents so it is challenging for them.
- In addition, many of these facilities are short staffed (ask about that).

2. Consider / Ask: they may need to be in memory care - or one might need more care.

3. While I understand you may not want to trust a caregiver (where they are now ...) , you need to screen them thoroughly enough to feel you can trust their abilities / judgment. You will have to 'train' them. (I do this work ... I've trained caregivers; it takes time and can be exhausting.)
- The reality is: Some only do for the income and don't care much about their clients. They have kids to feed and can't get other work due to education and/or Eng as a 2nd language so it is challenging
- Some work through agencies; others are independent contractors.
- Ask for references, car insurance / DL, experience, dependability; if foreign born: immigration status
- Create a form of questions so everyone is asked the same question. If you need a list of questions to ask, let me know.

4. As another mentioned, why are you WAITING to sell the house?
You may (very well / likely) need those funds to cover their current and future costs. . . . I recommend you find a realtor ASAP and get the house on the market.

5. You cannot run on empty. You need help for them.

6. While not ideal
* They may need to go into separate living facilities. This sounds heartbreaking although you need to do what you need to do for them.
* You might need to consider moving them further away ... to another facility so they can be together.

7. I would recommend you speak to the social worker on site and/or if that doesn't work out to help you figure out what to do, hire a med ind social worker for advice / support.

You are VERY FORTUNATE in that they have a house to sell - to provide the needed income.

Gena / Touch Matters

The more you do, the less the aides will do. If you are constantly helping your parents throughout the day, they will just skip the room or the work because you are doing it. Get a camera and monitor what happens when you are not there. Give them a chance to do their jobs and give yourself a break. But it does sound like your dad needs a nursing home and maybe your mom can manage AL if her cognitive abilities improve after she adjusts to the new situation. If not she may also need skilled nursing facility or MC.

People always think that just because you place your parents in care, that your job is over. Nothing could be further from the truth.

When they are in care, you must constantly check in with the doctors and nurses, who are prone to mistakes; bathe, dress, toilet, and feed them; entertain them; change their bedsheets; make sure meds are properly administered, and more.
You might need to hire more help to get the care that they need.

I feel your pain. Mine are 99 and soon to be 98. Both have mild to moderate dementia. One is mobile and recently went to AL. The other is bedridden and stays in my home. I have brothers who do what they can. The care issues started in 2020 and the decline has been slow and steady. They still own a house.
You have multiple tasks and complex problems to deal with. I won’t say “solve” because that implies that it is solvable - which it isn’t. As long as they are living, there will be changes and new challenges. My goals are to, as much as possible, keep balance in my life and constantly re-check my plan of action. It is not an easy thing to do. I too thought it best to keep them together, but I had to accept that once my mother couldn’t walk, that was not practical or possible. So, she moved in with me one state away. He continued living in his house (with my brother) until it was clear that he could not be trusted alone and that he needed the socialization that AL could give and my brother could not.
My take on your situation is this:
1) stop prioritizing togetherness over appropriate care. Maybe your Dad can be in memory care with your mom in regular AL in the same facility? Maybe you care for her in your home while he stays in MC with visits? Make a plan for whatever works financially and care wise concentrating on those two things. If they can be in the same facility, great, if not, you do what you have to do.
2) Finances. I’m sure you know that care costs are high. The cost for two is astronomical. Take a good look at what they have and what they can afford. Research whether they will be able to qualify for Medicaid in the future if they need it. Sometimes pensions and social security payments complicate that. If that is the case, research whether a Miller Trust can work. Don’t count on Medicaid if they own assets. If they need money from the house start working on that. Don’t pay for private aides in AL unless absolutely necessary. Work with the facility to get a better response or find a better facility and f you can. But remember, AL is not going to be one on one. You will have to do some of the lifting - but it should not be heavy lifting and not all the time.
3) Re the house: Get it ready to sell. Clean it out. Assess repairs. Paint as needed. Sell it when it will not be an emergency so it is not a fire sale. You mentioned you might buy it. If you do, remember that if they need Medicaid there will be a 5 year look back. That is not an issue if you can show you paid a fair market price. But a below market sale might be trouble ahead.
4) speak with your siblings and get a clear idea of what they are willing to help with and when. Agree on how the work will be divided and compensated.
5) Do what you can - not what you can’t. Sometimes good enough is the goal because perfection is unreachable. You don’t need to pay gurus or counselors for much of this problem solving. Take breaks, exercise, time for yourself, activities that bring joy. Reward yourself for doing the best you can with a bad situation. But if you do feel the need for outside mental help - seek it out and use whatever resources are helpful.

This is a very delicate situation. I hear you. I have been there and doing that. No one except for a few comments here can really say that. My Mom’s situation is the same but different as is everyone’s in this stage of life. No one has the exact answer. My Mom’s dementia is reversing when everyone in my circle said it’ll just get worse. Everyone I’ve read here says to “just sell the house”. Like it’s so easy peasy. You have options.. We all have options. Whether it’s a feeling of loyalty and obligation or just plain LOVE for your parents, only YOU know the answer as to why you choose to spend your time doing what you do. There ARE some things only a son or daughter or POA CAN do. Period. There ARE times to pull back and see how the staff will be with your parents without you there all the time. But we are their children. We will always be their children. As they will always be our parents. Parents who deserve the very best care. Period. They took care of us when we couldn’t and yes, now it’s our turn. Whether we do it ourselves or find the right help for them to help us out. We don’t abandon our loved ones. We also don’t neglect our own needs. It will take time to balance their needs and yours. But you will find that balance. And you’ll be in better condition when you DO see and lovingly get things done for them. I don’t know how many times I was told that I have to take care of myself while in the midst of my mother going through such a hard time. I understand the possibility of the caregiver ending up in the hospital or worse while taking care of their loved ones without any help. There must be a balance. But only you can find out what that looks like for you and how to get it.
My parents had many pieces of property when they were married, and I was raised watching them manage their properties and we also had restaurants.. and the only thing I could think of when reading your issue was possibly renting out the house and not necessarily selling it. And you could make income from that house and work part time. I haven’t heard or read that suggestion yet. You can get a management company to manage the house and vet the renters for a small percentage of the rent. So you don’t have to do all of that work either. Everything will take time. And time is our most valuable commodity. And if you want to spend your time with your parents, I’m not here to tell you not to do that. And at the same time, it truly is very important that you take care of your own health so that you can make the most of your time with them. And give the staff a chance to get to know your parents so that when things do go awry which they will, they’ll be able to know how to handle it. However, saying that, still be VIGILANT. Do not let much time go by between visits.. Surprise them (and I mean the staff). So they don’t expect you on a certain day or time. And keep an eye out for other locations “just in case.” Because you just never know. You are not obligated to keep them at a certain place forever. If there are more than one or max two occasions that something is done completely out of bounds, you have the right to call the local ombudsman and the health department and report them if they’re not doing the right thing. You can do this anonymously as well. And find them another place. No place is perfect. But they deserve to live in joy and peace as do you. I don’t have siblings to help me or a husband to help me. But when I come to my mom’s facility, they know me very well. And they know what I need done and how I need it done. And if things don’t go the right way (as newbies do get hired there too), I am not afraid to let them know. Your parents are in a position where they need someone to speak up for them. And that’s who we are as their children. Like I said at the beginning, this is a very delicate situation and you know your parents better than anyone. It is possible for there to be a balance.