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

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They were originally moving to a companion suite. Now of course they can charge full price for both rooms, instead of the couple price which is much lower, not to mention that the memory unit is much more expensive. She doesn't wander, knows her family, she can read still. The memory unit is not the least restrictive level for her in my opinion. They say DOH sets the standard, but I can't find that anywhere.

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