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Merla

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Anonymousjpl123

hi Merla,

My sense is that it depends a lot on the level of care a person needs. If your mom is fairly alert and self sufficient, independent living to AL to MC may work really, really well. In my mom’s place they have that and I have made friends with a lot of people who have gone from one level to another. That being said, that works best for people who start off with mild cognitive impairment and/or who can take care of most of their daily needs.

Moving to an apartment close by is harder, because it will be harder to move when her needs change. There are a lot of places now with varying levels of care, with amenities like regular apartments for people with fewer needs and much higher care levels as people progress. It sounds like that may be a good option.

Also, with her staying with you, you will get a much better sense of what her needs are. It’s really good you’re thinking about this now. Much harder later down the road.

Emily 123

Hi Merla,

You've made a good start with organizing your thoughts. My experience has been that if you're picking up on increasing forgetfulness of new information, then that includes not only information that they hear, but also information they can see. When a PWD is moved to a new place it can take a while (weeks/months) to get into a new routine, because the disease blocks their ability to save a new information. Given that you have small children at home and very likely not a lot of time to catch your breath as it is, an AL level of support will be a better choice rather than IL. You may also want to investigate if there are any care homes near you that might meet your mom's needs as well.

Keep in mind that It's easy to underestimate how much the PWD becomes reliant on the same environment and routine to get them through their day. A decision based on their abilities in a familiar place they may have lived for years might be over-estimating their ability to function well in a new environment. Another issue you might see once they're moved is increased difficulty assosciating time to events. Their memory loss means they can't sense time passing or 'when' they are in their day--outside their familiar environment and routine they'll need more cueing to take meds, go to luch, participate in activities. You don't want to end up being the linchpin that provides 'assisted living' level of support to keep your mom in an 'independent' apartment. It's very time consuming and unless you have the ability to drop everything, right away, it's going to be stressful.

In stage 4 my mom was unable to recall that her move to my town was permanent - every day for 9 months it was clear that she thought she was visiting. Map in hand, she'd get turned around on walks around the block, so that I bought a GPS for her coat pocket. And yet…up to a few months before that she was managing her finances and household. So. Be aware that if you're already seeing memory issues she's likely a better candidate for at least AL level of care. If she's prone to walking out alone then I'd assume worse case scenario and make sure there's safety rails in place that provide some oversight-you do not want her to go out on her own and then get lost.

Beware of the 'regular' hospitality-based AL, where it's basically apartments and the expectation is that she'll be able to be social and stay on top of her IADL/ADL's without cues. (Can she recall new people's names? If she can't she may struggle to find a friend group in IL/AL. What's the layout like? Does every hall look the same? Will that present challenges to a PWD?)

There are checklists available online that can help you organize your thought (possibly even on this site). Nerd that I am, I made a spreadsheet listing room amenities, square footage, base price, then additional levels of care costs. I also included a column for their staffing-you'll want an RN on staff as nursing director, and to ask them what their staffing plan is for after hours-is there 24/7 RN availability? What's their process for when a resident needs medical care? What is their staffing ratio? How do they address complaints? What would get mom kicked out? Facilities are licensed by the state for the level of care they'll provide, and many states maintain an online database of complaints by facility, as well as inspection reports. Example:

https://www.dss.virginia.gov/facility/search/alf.cgi

Levels of care: Most AL's will start increasing the monthly rent as the level of support increases. So assistance with meds is fairly common and might be a very basic level of AL, but showering assistance will cost more.

'Hospitality' AL's will care for ambulatory residents— but they may each define 'ambulatory' differently based on their staffing. Find out what they mean. Some places will only support a person who needs minimal assistance to move themselves, others will say that if a resident needs more than one helper to move that the person should be in a different level of care. Ambuatory places will at most do a 'two person assist'—beyond that they don't consider a person ambulatory -they may need a lift, and that's a step up in care. Can the facility take your mom from assisted living level of support to hospice? What % of their MC patients do they have to transfer out of the facility to a higher level of care as they enter final stages? Do they allow hospice in their MC unit? Dietician? OT/PT in-house? Podiatry? Dentistry? Medical group? Do the do hand-over-hand feeding assistance or do they consider that nursing care? Can they provide a pureed diet? What specifically would they consider nursing care that would mean a transfer for mom?

In terms of MC—does the AL wait until the resident is really debilitated and a move to MC is a last resort, or do they have MC for a wider range of residents, some of who may be physically fit but need all the support and engagement a good MC can supply? A facility that won't move a person to MC until they're really debilitated may not be staffed on both the AL and the MC sides. The AL side might expect you to provide additional out-of pocket care because they aren't staffed to provide the level of assistance your mom needs as they hold off on transfering her, and on the MC side they're busy taking care of seriously debilitated people and aren't set up to provide interactions for more physically fit residents.

Sniff test: Do the residents look clean and well-kempt? Is the facility clean? Staff seem professional and happy? Ask family in the parking lot what they think. Check out Google and Yelp reviews, keeping in mind that some are just from people who've done tours or even employees. What's their rep in the area? Pastors and social workers go in and out of those facilites—do you know any? (If you can get mom set up with a healthcare provider they can refer you to a social worker.) A lot of my neighbors have elders who ended up with dementia—ask around. Do you see a lot of private-pay aides around? (could be a red flag about staffing).

A big beautiful AL that has all the bells and whistles isn't going to be helpful if they aren't staffed to keep an eye on your mom. A smaller less modern facility might have less residents, and a better staffing ratio with better trained staff. Keep in mind that your mom's ability to participate in things will decline. A place with all kinds of amenities but unstaffed to help your mom use them might not meet her needs as well as a place that can get her out participating in things every day.

Definitely get her to a provider for an assessment-you can tell her it's a new requirement by Medicare when a person moves to a new state—let the provider know ahead of time what your concerns are. Some things can mimic dementia.

mabelgirl

I’m in the process of hopefully getting my mom moved into AL but am braced for MC. Before starting this process I got her DPOA in order for both finances and medical. Simultaneously I worked with area agency on aging to get help with in home care and also applied for a Medicaid waiver as she did not qualify for full Medicaid. The waiver gives her long term care assistance whether in home or a facility. Now with all that in place I have looked at smal residential setting (6 patients ) and larger facilities accepting Medicaid. My mom is not active but she is social when not being stubborn. I look to see if they have activities, beauty parlor, visiting in house physician , laundry (she has to do her privates) outdoor access with sitting areas and whether there is both AL and MC. I then look at their licensing records to see if any complaints and how they were resolved and when. Look for recent change in ownership. If it looks good and reads good I schedule a tour by myself. I made the mistake of taking mom with me to visit a day center and boy did that cause an explosion! I have now 2 places my siblings and I are considering one is available immediately the other still in licensing phase of the new home.
Personally, I would not move her in with your family. I think the less moving the better. My mom has never been the nicest of people and with dementia and her Anosognosia she can be down right vile. I think it would have been much easier on her to move directly to AL from her last residence.

Prayers for a peaceful transition.

livefree2

Try zeroing in on an enriched living that has options to have AL. My mom is in one. There are many residents that are there that are independent and living their best life with friends, community events, etc. They are living in single apts. My mom is in a shared room because she is on Medicaid. I thought this would be her “age in place” but unfortunately she’s progressed to MC placement in another facility.

Location should be as close to you as possible so you can still take her to pickle ball, etc…

Hope this helps.

harshedbuzz

What should I be looking for in a care facility? I'm not sure what budget I have but want to research all options in my area

In past posts, you have mentioned concern about funding care especially if your mom progresses slowly and needs years in a facility. Given that, you should definitely sit down with a CELA asap and figure out what assets she has and start planning for Medicaid if it is even a remote possibility. If it is, don't even bother to look at the fancier corporate for-profit places that don't accept Medicaid as you will most often need to self-pay for a couple years before converting to a Medicaid bed. If you spend down elsewhere and turn up as a direct to Medicaid resident, your options could be very limited as priority is given to current self-pay residents who are converting over.

what should I be looking for in a care facility besides just cost. And even in terms of cost, I get should I be looking for in terms of cost structure?

There are lots of posts about what to look for in terms of quality. I believe there's one started in the past week on the spouse's board.

I would be wary of places that offer tiered pricing as the often lure you in at one level and then immediately raise it. I would also be cautious about places that offer AL and MC that sometimes promise families lower price AL to start knowing their LO needs MC. Ask about entrance or communities fees in addition to monthly fee.

Also would it be a horrible idea to have my loved one live nearby like a 5-minute walk in an apartment? I know that this arrangement wouldn't be forever but perhaps it could last some years.

Given your past descriptions of your mom, this probably isn't sustainable. Closer proximity doesn't replace human supervision. She can elope and get lost or burn down the house living 500 miles away of in the next room. She's going to need human supervision soon. This is one of those things that OK until it isn't.

I was thinking my loved one could live with us for a short period while we look at living options for her and i can assess her cognitive state and hopefully get her a medical evaluation. I think it's a hard no for her to stay with me because I have young kids.

Your past posts have described her as difficult and suspicious. Was she also the one who didn't like a daughter to visit with her child? If that's you, in your home doesn't sound like it would work. Your first responsibility is to your children.

My loved one is in their early 70s. So younger than a lot of people in independent living. She is very active, likes walking and biking and playing pickle ball. So many of the facilities I see are just essentially a building.

Most MCFs operate on a home-like model— the residents room is for sleeping and resting while the public areas serve as living and dining areas. Depending on where you are there maybe an outdoor patio and garden space as well. And just an aside, does she actually do these things or just say she does? Dad always said he was golfing or at the pool daily but when I went to FL to sell his house, neighbors reported he'd not golfed in over 5 years and they'd not seen him at the pool with mom the last 2 years.

so far my primary criteria is a place that has all levels of care from independent to memory care. Are places that specialize in memory care the best option even if the person starts off in independent living?

Can she afford this? Many of these places have hefty entrance fees on top of their monthly rent and other monthly fees. My uncle suggested I move my parents into one near me that has a $700K entry fee plus monthly fees similar to other places. 80% would be refundable if they left/died and were up-to-date in their fees.

Do the ones near you take Medicaid? Near me, only some do. My top choice campus that has all the activities and care levels from independent to SNF vets their perspective residents closely. They even require cognitive testing to avoid people who will need a higher level of care sooner rather than later. They pride themselves on being a vibrant and active adult community, and they do allow residents to age-in-place with dignity and excellent care but they don't want to be seen as a nursing facility.

i looked at one place that said they had memory care but when I talked with them, they said this service was ancillary and they only dealt with people who have mild to moderate cognitive impairment.

Anytime you tour, ask if PWD can age-in-place and under what circumstances you'd be asked to leave or add additional private-pay caregivers. Also, at any place that has the full range of levels, tour everything. Seldom is the quality of a place excellent across the board. My preferred place rocks Il and AL, the SNF is good, their rehab is only so-so and they closed their MC 2 years ago and moved the residents into the SNF. My second favorite CCRC offers an amazing hospice program and IL/AL but the rest is kind of meh. FTR, both are Quaker affiliated with similar philosophies yet different.

HB

Anonymousjpl123

Hi Merla - very true that you won’t know until you spend some extended time with her. Be mindful, though, that changes can really upset the apple cart if you will. She may have seemed fine to you but a big change - like a move - could lead you to see what family saw when she was out of her normal environment.

I say all this not to sound like Debbie downer but so that you are not caught off guard. Either way, your mom is very lucky you are taking actions now, it will make it so much easier down the road no matter what course you follow.

M1

Merla, remember too that our natural tendency is to overestimate our loved one's abilities and underestimate their impairment. The fact that your relatives reported significant concerns about her impairment is sobering and probably a reality check. Your mom sounds like a huge risk to get lost on that walking path. You need to plan for her worst day, not her best, and safety has to drive the decision making.

H1235

This staging tool may help when you have a chance to spend more time with her. What are doctors recommendations for the level of care she needs?

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

harshedbuzz

@Merla I think the only way you are going to get any real clarity here is to go on a fact-finding trip where you stay with her 24/7 for several days. This will give you a chance to observe if she's more with-it at certain times of the day. It would also give you a chance to see what her living conditions are— is there spoiled or out-of-code food on hand, is she showering and changing clothes, is she truly walking and at the gym (dad self-reported this but it wasn't true for that last 3 years at least), is she truly engaged with friends? Speaking with them could be eye-opening.

My friend's mom lived a mere 1/2 mile from her. They spent a chunk of each day together as friend would pick mom up after her PT job ended at 12:30— they'd hang out, run errands, fix dinner, watch a little TV and then mom would return to her townhouse for the night. My friend knew mom wasn't as sharp as she'd been, but it wasn't until she moved mom in with her at a new house she'd had built for that purpose and was readying mom's place for sale that she found the spoiled food, dusty soap, dirty clothes stashed in weird places, etc. I only saw my dad a couple times a year, but in retrospect, I had a clearer idea of how my parent was functioning than my friend who was devoted to her mom was.

You seem very focused on her age and how she looks. Sadly, she is on the younger side to have dementia but at the end of the day, it's her care needs when she's struggling the most that need to be considered not whether she is youthful looking. One concern I have about a more hospitality model AL is that in addition to insufficient care and supervision, she likely won't be accepted by other residents. Often, we see our LOs with rose-tinted glasses. You may think she looks like she works there (there was a lady like that at dad's MCF, too, she was further progressed than dad who looked like a Yeti) but the other residents who don't wish to be grouped with PWD will figure it out with the first repeated story or inappropriate comment. My aunt's family placed her in AL when she was more appropriate for MC. It went badly. The other ladies quickly assessed her as unable to keep up with their conversation and activities and shunned her. This was real middle school meangirl bullying.

HB

H1235

It’s great she is so active. But lack of good decision making could still be a potential problem. If she can go for a 3 mile walk that’s great. But will she know she shouldn’t do it in the middle of a 90degree day. Will she remember to bring her phone with her and drink plenty of water. Will she know her limit and make sure she has the energy to get back. Then there is the concern that she could get lost. Anosognosia- not being aware of her symptoms and limitations is very common with dementia and very difficult. It’s going to be a tough balancing act to keep her safe and still allow for that much activity.

kblau

same boat as you. My mom is 72. Put her in the bells ans whistles ALF. Bc she’s young and active. And it’s a big community lots to do. That was 3 months ago. It’s been torture. She’ can’t navigate the community . It’s harder for her to meet people and she doesn’t like to do things now bc it’s not her routine. Got the call it’s not a good fit. MC.

who she is today is likely going to change when she’s in a new place.