My parents are moving to AL and say Mom needs the memory unit. My parents and I don't agree. Are there DOH standards?

Another thought: since most AL's are month-to-month rentals, the facilities may observe that a couple no longer "fits" with their community and ask them to leave. I have at least one friend whose parent is on their 3rd facility this way. Most people imagine they are going to move to AL and that's where they'll be forever, but not always the case.

Yes, it was so hard for gramma to just be around her husband--they even had live in caregiver and more, but it was so stressful (live in CG would quit too, it was so hard). So he only way gramma could "quit" was, once her hubby was in ALZ care. Then she could relax and go to Heaven for some respite!
But I also feel (maybe too strongly) that A.L. residents do reasonably expect their homes, hallways, dining room and common areas should be free from disruptive behaviors....even if that is from another resident's spouse. After all this is why people are moved to memory care or dementia wing, because their behavior needs are too great to be met by just their spouse or by themselves. Its a nice way of saying, these individuals do not "fit" in with healthier people--its no good for the sick folks, but it also isn't any good for the healthy ones. Very rough time for a couple, I hope doesn't happen to me, but I have written in my Health Care Directive that I don't want to be residing with family or spouse if I should develop ALZ or similar. Because it's too hard on THEM.

This is common knowledge among those who work in senior living...the caregiver often dies first, particularly when advanced dementia is part of the picture. They carry the stress not only of the caregiving (which is overwhelming in and of itself), but also of maintaining the facade for the adult children. No matter how much those kids think they know about their parent's dementia, they really only know the tip of the iceberg of what their caregiving parent deals with all day, every day.

Samara, my aunt and uncle were a similarly sad tale. She cared for my Alz uncle for years at home. She finally agreed to a memory care placement. She died of a massive hear attack a few months later. Uncle lived happily for another 2 years. It's a cautionary tale for me.

This is such an interesting question. Probably as Pam mentioned, it all depends on your state laws. I hope the OP will re-post updates as her situ gets resolved (sounds like an ongoing fluid situ). On a side note, I did have a grandparent couple, one had ALZ, they survived about 18 mos at home with 18 hr paid caregivers. Then moved to adjoining rooms in NH and one spouse died 2 wks later, we all say they were so incredibly worn out from having been in the presence of their ALZ spouse. IE they would have lived much longer if their ALZ had been placed in NH, earlier, so the wife could finally get a break from all that craziness. Its incredibly stressful just to be around. And if my spouse and I were in AL, someday, and the couple next door had ALZ, boy I would be moving in a flash (if it were disruptive). Those who do not have ALZ shouldn't be forced to be continually exposed to it, especially if they are paying a lot of money for a nice AL, it changes the dynamics of the AL.

We have a similar issue here, but turned 180 degrees. Clearly my Mom needs memory care, a secure facility, and I expect it may be a nursing home. However sibs think Mom would be just fine sharing an apartment with her husband. They are looking onlynat cost, not what would be best for both of them. He needs assisted living, mom memory care. So the cost will be in the area of 10k a month, on the low end for both of them. My mom's behaviors while she is still at home are difficult to manage and her hubby is relieved when I take care of this dirty work. He willingly admits he would not be able to do it himself. Does not make sibs happy in the least they have their eyes on the prizebat the end of the rainbow.

In my area we are beginning to get what they are calling memory care transition programs in assisted living/memory care facilities. They allow a couple to share a unit at a reduced price for double occupany. Then the one with dementia participates in a day program, at additional charge, to give time to the caregiving spouse. It will be interesting to see reports on how this method actually works. My Mom as it is is up and down all night long. If she were in a new place sharing space with her hubby, he would never get any rest not good for him. Expensive, yes but it is their money for their care.

I'm an Ombudsman in NY. Placement must follow the laws for Mental Hygiene Law, Public Health Law and Social Services Law.
The law requires that the facility, the primary physician and the home care agency (if the patient has one) ALL agree that the needs of the patient can be SAFELY accommodated, without 24 hour care.
Check your state laws.

Whether/when an individual is a candidate for (or not acceptable in) any of the various levels of retirement "continuing care" is certainly a matter of state law (the facilities are licensed by state) and may be a matter of Federal law as well, particularly if Medicare is involved (e.g. eligibility for Skilled Nursing Facility - SNF) or Medicaid.

Ask to see the assessment forms the facility is required to complete for admission -- that is, very likely there will be questions about key abilities/skills for either Assisted Living (AL) or AL with Memory Care (MC) and I think it would be helpful for you to see — as objectively as you can — in which areas you and the facility truly do have different assessments of those abilities. The facility might use some version of the PSMS (Physical Self-Maintenance Scale) for assessing activities of daily living. You can see one version here; it's the one my Mom's facility uses.

Other scales (IADLS) take into account the ability to use tools such as the telephone or do shopping, laundry, handle finances, housekeeping, prepare food, etc. Do it yourself to compare your parents' similarities and differences in these areas — and perhaps have each of them do it as well, but don't forget Dad may be protecting Mom in his assessment of her and may have largely taken over some such tasks for them both. (If he has, he's evidently decided he needs not to continue to do them.) Have you talked with your mother's physician about these issues? What does s/he think about your mom's cognitive abilities? Has Mom had an MRI? Seen a neurologist? Been evaluated by anyone other than the facility — or is the facility, in fact, relying on such evaluations? I know how difficult it is to accept that Memory Care is necessary for a loved one, especially when we've gotten used to "accommodating" our loved one's inability to do things.

Another important issue for entry into Assisted Living is some ability to manage one's own medications — even though the staff there dispense them. And this relates to each of your parents. Mom may have to have the ability to do this for herself as Dad wouldn't be the one legally responsible party if there's a mistake. For example, Alabama state law has restrictions on who may dispense drugs to persons who do not know/remember what drugs they are taking and what they are for, as well as being able to identify their name and date of birth on the Rx packaging to demonstrate that they KNOW it is for them. In Alabama if a resident/potential resident does not know/remember these things (I knew my mother couldn't and thus could not protect herself from being given someone else's medicine or being given a double dose of her own) the facility must have a NURSE rather than a MedTech) dispense medicines. Fine with me, except in Alabama ALFs are not required to have an RN on duty in at all times, this means that the ALF has to staff differently than they otherwise would if any of their residents don't meet this state requirement. Sounds like a very good requirement to me and although my mother's facility was willing to have an RN from the Memory Care unit come over when from time to time when that was necessary, it was not something they HAD to do. They could notify the family that she was no longer appropriate for AL, which eventually is what they did when there also began to be other issues.

Another significant "red flag" is a propensity for wandering. AL facilities are NOT secure...they do keep people OUT (after certain hours only) but they don't keep people IN. If you don't live under the same roof with your parents it is possible, Lynn, that you don't know if that behavior -- or some other -- has been occurring (or your Dad has taken over much of the household chores) and your parents are either hiding this or don't recognize the significance of it.

While NOT knowing one's family surely indicates some profound memory loss requiring Memory Care, the reverse isn't necessarily true. That is, knowing one's family seems to last longer than many other memories and doesn't mean a person doesn't need Memory Care. Strangely enough, I don't think reading is a good "test". My Mom can read perfectly and even know that she wants to share a particular article with me, but she can remember nothing of what she just read nor, for the same reason, can she enjoy television or a film with any sort of "plot". That's also why she can't help asking the same question over and over. It's not that she's "forgotten" the answer, she never was able to make a memory of the answer in the first place.

Of course it is POSSIBLE that the facility is just trying to get more $$ and if you really believe this is true (anyone would have a flashing thought but if you just really can't get over your suspicions) they shouldn't go there. Because I PROMISE you, you all are not going to be happy with that facility next week or next month or next year. If you have such a fundamental trust issue at the get go, it's only going to get worse. No facility is perfect and, if you are anything like my sisters and me, you are going to have issues crop up over time, everything from when meds are given to how much cajoling staff will do to get residents to eat, be active, or take a shower (practically NONE in AL and sometimes less than we'd prefer even in MC! In neither, of course, can staff MAKE residents do anything.) If you think they are lying to you now, what will you believe about other things in the future? How will you resolve even minor differences?

If you are otherwise satisfied with this facility, then I STRONGLY urge you not to "burn any bridges" with them at this point. If you haven't looked elsewhere, you should — and ask them the same questions about "appropriate for" and state standards. Every facility has to abide by the law (tho' some do not!) but it's possible that a private facility may also have policies that go beyond the law — it's their choice as a business whether they want to staff at a higher level than is required, for example, or if they don't. Keep doing your research and ask all the facilities the same questions, particularly about how EACH assesses candidates for Assisted Living versus Assisted Living with Memory Care. And if Mom hasn't yet seen a neurologist for an evaluation of her cognitive abiities AND an MRI, then that's a first step! Another thing to think about: from experience, there is value in having AL and MC available at the same place. Your Dad will probably be able to visit Mom easily and, of course, family will find it easier not to have to travel in two directions. If it were I and there was already an indication that one parent was going to require Memory Care if not now but almost certainly in the future, I wouldn't want to put BOTH parents thru the relocation upset and expense so as to obtain that care for one; I would choose an ALF in the first place that also had MC on site. It's also very helpful to the family that has already built a relationship with staff not to have to "start over" completely.

Whether your folks can afford two different levels of care now — OR in the future — is, of course, a very important question that you'll need to answer. But don't assume that a higher cost to them automatically translates into a higher PROFIT for the facility (which would be the presumed motive for a facility to lie to persuade people to go in to MC).

Memory Care costs more to purchase because it costs more to provide. It takes MANY more staff to protect, keep secure, and take care of people whose dementia has progressed to a certain level. They will be doing all the things that your father is either now doing or would have to do in the future. Mobility and balance are also issues as dementia progresses and MC staffing provides much more assistance in transferring from sofa to walker to toilet to dining table, etc. than is typically available in AL

If your parents' resources won't extend to them both being in a healthcare facility but not in the same suite, and if others think your mother DOES need Memory Care, then you will need to explore other ways to address their shared and individual needs. Home help can be great but has its own challenges. Be sure to read some of the postings and answers about those issues on this site if you want to evaluate that option. Respite or "day care" of some sort for your Mom to give Dad a break, as well as some outside help with housekeeping, laundry and/or cooking may leave him more time and energy to address your Mom's needs. Of course he has his own as well and caring for a spouse with dementia is more difficult than you may imagine. Another possibility is for him to stay in their home and Mom go to Memory Care. I suspect that option is the least attractive of all, but it is cheaper than what the ALF has proposed and may be necessary, particularly if he wouldn't really need AL for himself but they had decided on that approach primarily because they thought it would address your mother's needs.

This is all really hard, Lynn, and I will hope and pray that you and your parents find the best possible solution for them in whatever are the actual circumstances you all are dealing with. Please post again and let us know.

Angels watch over you!

I just want to clear up the concept that all dementia patients eventually need Memory Care units. NOT TRUE. Some do. Many do not.

contact your local long term care ombudsman, there should be a sign that posts the name and how to contact your ombudsman. The ombudsman would be able to assist you with regulations and can assist in advocating for your mother.

That's another idea. With your mom having significant dementia, it would be very stressful for your father to stay in a room with her. It's not just the memory issue, it's that the dementia entails other symptoms that are challenging to be around such as constant taking, repeating, pacing, moving objects around incessantly, suspicious delusions, etc. It's very stressful to be around a patient who does those things. I would really consider if your father would fare well in that constant environment.

Hi Speechlynn. Your question seems to revolve around cost without any thought given to need. Are you currently the caregiver for your parents? If your parents move into a shared unit, the facility probably doesn't offer any help for your mom, and so your dad would have to be her caregiver. You didn't mention their ages, but that arrangement may not be possible for an elderly man to manage on his own. He apparently recognizes that problem and finds that the only solution is for your mom to move into a memory unit. I'm assuming that the facility is a progressive one, so he could be close enough to visit with her daily. Does your dad understand the finances involved in this arrangement? Can they afford to do this? Do you have DPOA for either of them? This is a big decision and I hope that you and your dad can come to an agreement without causing a family rift.

Hey Speechlynn, Are you parents self pay or are they on Medicaid or some other state/county public assistance for Assisted Living and Memory Care?

I know that depending on the state, that may make a difference. In NC, qualified recipients are placed into the Assisted Living/Memory Care facility that best suits their needs. Those particular needs are determined by their doctor, health care worker or Nurse at a long term care facility completing a form called a FL-3. You can find one online and see the types of things they address that determines the level of care. This may be one place to look at the factors that are considered when placing a dementia patient.

I agree with StarSong above. You never know how fast the dementia will progress. Even if someone fits in nicely at a regular assisted living, it can change fast. That happened with my LO and I had to relocate her within months. Her transition was fine, but for most I know it's difficult. My loved one has Vascular Dementia like your mom. From what I have seen, it's particularly rapid in its progression. I wish you all the best.

It doesn't sound like they need the memory care unit. Where our mom is in Atlanta, the people in the memory care wing are WAAAAAY below here cognition ability and at 102, we feel the others and their "activities" are dragging her down. Check out the assisted living facilities. If they continue to decline, they often can move to a different floor as additional services are required.

Ask them to see the DOH rules for the memory care unit, if that's the reason they're telling you that she has to go to memory care. You have every right to know the reason why they want to put her in memory care.

Your theory about them wanting to bill for 2 separate rooms could very well be correct. I'd call them right out on that & ask how much the difference would be keeping your father & mother in a shared room vs. having your father in a separate room & your mother in the memory care unit.

Unless you're dead set on putting your parents in that facility, I'd look to other facilities.

You might want to explore in home services, 24 hour live-in, it keeps seniors in a familiar environment, provides for safety. Be sure caregivers are trained and specialize in senior care and have specific education for social engagement.

On a side note (inspired by rabbit72's comment)...many people with dementia lose their day/night rhythm and it becomes very difficult for them to keep a 'normal' sleeping schedule. It's a staffing struggle at AL and SNF communities. The more innovative ones are moving toward a resident-led schedule; they're modifying the community to fit the resident rather than the other way around. But, it takes increased staffing ($$$) so not all will be able to entirely make the shift.

"What if dad wants to get up at 3 am and sit in the common room and watch TV?" is a good question to ask during the selection process to gauge how the community would handle this issue.

Is there a reason your parents couldn't live together within the memory care unit? Your father with full facility privileges and lower levels of care, your mother with more care but being evaluated in real time and real circumstances to see how she manages.

If your heart is set on this facility, you might want to have a conversation with the director to learn exactly what deficits they observed in your mom that would preclude her from the general population?

I was within earshot during the evaluations done by that facility as well as the one we eventually chose. Listening to her evasive answers was heartbreaking:
Q: "Can you tell me today's date?"
A: "I can't keep track of the dates now that I don't get a newspaper."
Q: "Can you tell me the President's name?"
A: "I stopped paying attention to politicians a long time ago because they're all the same."
Q: "How old are you?"
A: "You don't even want to know that. I'm ancient."
And so forth. I stayed just outside the doorway. Close enough to hear, but out of her line of vision so she couldn't look to me for help.
Those interviews shocked me. I knew she'd had losses but had no idea how far she'd slid, especially since she still recognizes everyone (vascular dementia, not Alzheimer's).

Your suspicion that facilities can be motivated by money and space available may be well founded. When searching for AL for my mother we saw several facilities. One didn't offer memory care, and was really pushing us to move her in there. We resisted because it was obvious to us that Mom's cognitive skills would have put her at the lowest level of the residents we saw during the tour. At her rate of decline we would have had to move her again in six months or less. They had a hefty move-in fee, which would have been squandered, not to mention the considerable disruption to Mom.

We continued to search and found the perfect place for her. It's less convenient for me to visit because it's farther away and off my own beaten path, but is much better for her. I hope you find someplace that will accommodate your family's needs.

In VA and PA, you need a doctor to indicate the need for Memory Care via a prescription/form. I can't tell from your description why they are suggesting memory care is needed. My dad was moved in to Memory Care because the staff to patient ratio was higher and he needed more help. In some places, you have the option of hiring a private nurse to supplement the care while remaining in the AL portion of the community - that can get expensive though depending on number of hours needed. My dad would try to get out of bed at night so we hired a "sitter" to make sure he didn't.

Quick note to CarolLynn: I have been bitten by the need for editing in posting in this and similar mechanisms in other venues (who hasn't?) - the downside of real time typing. If your comment is longer than the small view window, your best bet is to compose it using Notepad, Word, or something similar. Do your editing there, then copy/paste it into the window.

Don't give up on AgingCare! This is a great site and you are needed to help make it great!! :)

Depends upon your state, but regardless of how tight or loose the definition of who can live in AL, in the fuzzy area (like where your Mom's condition has her now), it's a judgement call by the community. They may decide strictly based upon an intake evaluation (which is a pretty comprehensive review of a person's care needs) or depending upon their staffing and staff skill set. Some communities work harder to keep a couple together.

If you aren't fully committed to this particular AL and you have several to choose from, look at a couple of others and explain your situation. See what solutions they offer. One I can think of is to have them live together in a single apartment, but add an additional care level for your mom – much less expensive than a separate apartment for her.

That said, you have to prepare for her to need a 'locked unit' at some point in the near or not-so-near future, so you shouldn't move them in to a place where their finances won't survive if one of them needs much more expensive care.

Oooooh, I'm about ready to give up on AC. It is BEYOND frustrating that there's no editing feature subsequent to posting!

CORRECTION - That may make a difference IN what answers you receive, AS STATES SET MANY of their own rules.

I would add that they have some flexibility with in Medicare guidelines; but when the state or Medicare comes to inspect, if they have patients being kept at the wrong level of care, and the difference is too egregious, they can be fined, put on a probationary license or shutdown.

Different states have different rules about what kind of care can be given in what sort of facility. In NY, for example, if you are a two person transfer, that can only be done in a NH, while in nearby Connecticut, it's okay in AL. Have you called your state department of health?

Your profile doesn't indicate where you are. That may make a difference and what answers you receive, a skate setting any of their own rules.

Generally speaking, each level of care, from residential to assisted living, or from memory care to nursing home, has its own guidelines. There are limits to what kind of patient each type of facility is allowed to administer.

It sounds like you're in a tiered facility, where the patients can be moved to different levels depending on their needs.

You might want to try interviewing some other facilities for their opinions.