Newbie here...when is it time move to Assisted Living?

Haron

Both of my parents who are 82yrs old, were recently diagnosed with dementia and started on Memantine.

Both have diabetes and my dad has congestive heart failure.  Both have had COVID and the Flu (dad being hospitalized due to this) and it seems that each time they experience an illness, it takes more and more out of them cognitively.  Anyone else have this experience?

They are currently living in their own apartment but have recently started to decline more rapidly than any of my siblings or I expected.  There is a lot of confusion, they have started unplugging electronics daily which includes the home phone.  Both have also experienced some form of hallucinations (mom seeing bugs, and my dad thinking he sees one of my siblings in the apartment).

They have a 15-month lease in their current apartment which I think we need to break given that they have now both been diagnosed with dementia.

I believe they should now be living in an assisted community and will hopefully be able to convince my siblings of this.

Wondering when others made this decision for their LOs and at what stage they deemed this necessary?  Did anyone start with home help first or just go right to Assisted Living?  Did parents fight the decision or welcome the help?  Was the decision discussed beforehand (not even sure they could still have a meaningful conversation about the topic at this point).  Is it better to have them tour the facilities if possible so they feel like they are the ones in control, making the decision?

M1

Welcome Haron, your experiences are not unique and I'm sure others will chime in.  First question that comes to me is:  who has power of attorney for your parents?  That is crucial, that person gets to make the decision.  If no one does, you need to see a certified elder law attorney asap--you can find them listed at nelf.org.  The question is likely not to be home help vs. AL but AL vs. Memory care.  If hallucinations are involved, it may well be memory care.  You can start looking at facilities near you, the professionals there will help assess your parents to see what their needs are.  Good luck-

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Haron

Unfortunately, my parents do not have any POAs in place and as far as I know, no Will of any kind.  My dad has become extremely paranoid about finances recently and the cost of everything.  He seems to think his children who are trying to help them are somehow stealing his money.

I am in the process of looking through living options in the area they are in so a move would not be too difficult.  Also looking at elder lawyers in the area.  May be too late to get any type of POA but we need to get advice on how to handle things at this point.

Haron

After my dad's recent hospital stay with the Flu and then last week with fluid around his lungs due to congestive heart failure.  we found his blood sugar was over 200!  He was always careful to manage his sugar intake and controlled through diet.  He had been on Metformin a few years ago but was taken off of it and was able to manage up until recently.  He was just put on Glipizide last week...I also wondered if the high blood sugar could be causing some of his mental state currently.  I do call everyday to make sure both are taking their meds.  My sister is also getting a new glucose monitor this week it can be checked.  They do have coverage to get HC services for so many hours a week and we are trying to decide if we should go this route first so someone will be there when one of us can't to make sure meds are being taken, they are eating properly (at least 2 meals a day) and blood sugar is being tested.

He was also started on Memantine which we are hoping will settle his mind.

Unfortunately, my husband and I tried to talk to my parents 2 years ago about Wills & POAs but they did not execute either so here we are with no control over anything and trying our best to help in the background.  Definitely will be reaching out to an Elder Lawyer in the near future.  Just received a few recommendations in the area.

I wish I lived closer but they are an 1.5hr drive away and it is difficult to get to them during the week.  One of my siblings lives 25 minutes away and goes when she can to help but it is already starting to wear on her.  I am one of 6 but a few have stepped back and don't seem to want to be involved so it is adding extra stress on the 2 that are handling everything currently.

Suzzin

I'm a little further along this path, but it's similar--two parents both with Alzheimers/dementia. I tried to keep my parents at home with in-home carers, but they fought that and it was very expensive. I did manage to get them to AL, where they have been for 2 years, but in the last few weeks it's become obvious that they can't manage even with "assistance" so I'm having to move them again. Given what you've said, it's dangerous for them to be left alone and the time to move them is now.  Looking back, I wish I had moved my parents to a facility that had AL and also memory care, which would have made the transition much easier. "Assisted" living in most cases covers the physical help they need (baths, medications, gentle reminders) but unless they are staffed around the clock you'll always run the risk that something can happen at night. Particularly with diabetes, that could be serious.

It sounds like your dad is more stubborn; could you work with your mom to at least get her POA? And, to be honest, if your other siblings aren't really involved then you don't need to convince them of your parents' needs. I found the book "Being Mortal" by Atul Gawande to be incredibly helpful in framing the conversations I needed to have with my parents.

PickledCondiment

Haron - M1 offers solid advice, source a elder law attorney asap.   Factually, you'll need the correct legal documents in place before you can make any decisions regarding your parents care, living situation, etc. Getting the proper paperwork in place takes time, start now, do not wait. To prepare for your elder law appointment: locate their checkbooks, investment statements, any financial/all  documents, start a list of questions, issues to discuss at the appointment. (More information is better.)  If you can locate any medical notes those will be helpful as well. You'll need appropriate authorization to discuss medical issues w/providers. 

There are aging, disability recourses in your area.  The people are lifesavers, they know the landscape and what is available.    

Keep coming back to this site, we're all stronger together.

dayn2nite2

Just by reading, my guess is your parents are probably beyond AL level of care and more into the MC level.

If your father is paranoid, I would advise you seeing an attorney regarding guardianship - it's unlikely you will get them to agree to move anywhere.

harshedbuzz

Haron wrote:

Both have diabetes and my dad has congestive heart failure.  Both have had COVID and the Flu (dad being hospitalized due to this) and it seems that each time they experience an illness, it takes more and more out of them cognitively.  Anyone else have this experience?

This is not unusual. Most PWD will suffer a decline with a serious illness. It is especially likely in the case of hospitalization or surgery with anesthesia. Sometimes there will be an improvement but seldom all the way back to a previous baseline.

You don't mention the kind of dementia, but it is usually the case the those with vascular dementia will have a decline that looks like a series of steps and plateaus versus the steadier decline seen in Alzheimers. Mixed dementia can feature both kinds of decline. 

They are currently living in their own apartment but have recently started to decline more rapidly than any of my siblings or I expected.  There is a lot of confusion, they have started unplugging electronics daily which includes the home phone.  Both have also experienced some form of hallucinations (mom seeing bugs, and my dad thinking he sees one of my siblings in the apartment).

I am sorry. My father also messed with electronics and started hallucinations in the late middle stages of his dementia. At this point my mom felt she could still leave him alone safely for an hour or so before late afternoon when the sundowning shenanigans commenced. 

They have a 15-month lease in their current apartment which I think we need to break given that they have now both been diagnosed with dementia.

I believe they should now be living in an assisted community and will hopefully be able to convince my siblings of this.

You only have to convince the POA or guardian. Since there is no POA, you could consult a CELA to see if they can finesse this situation. Some CELAs are wizards at getting this done assuming they feel your parents are competent to sign. Otherwise you are looking at guardianship/conservatorship which is considerably more expensive and time consuming. IME, the costs for guardianship are paid by the assets of the PWD if you are successful.

Are you the logical person to oversee decision-making? I, personally, would not share this sort of responsibility as I have seen it goes sideways where one person sees placement as necessary and another won't agree because of costs.

There's an old saw around these parts that by a time a family is willing to even utter the phrase "Assisted Living" that cruise has well and truly sailed. I believe that applies here. A hospitality-model AL offers little more than they're getting at home. Maybe even less given that you have home health services already. There'd be meals, maybe medication management and a daily well-check but they would be expected to get themselves to meals and activities on time. 

My aunt went to AL when she should have gone to MC. Money was an issue and my cousin didn't realize how much scaffolding she was providing her mom. My aunt crashed and burned. She struggled to make it to mealtimes and often just hung in the dining room because she was hungry. The other residents ignored her at best as it was clear she couldn't keep up with their conversations or the activities scheduled. A few of the ladies were full-on middle school mean girls. About 6 weeks into her residency, she had a fall and fractured her hip and wrist. She was on the floor for some time as AL only checks once daily when her morning meds were given. 

Wondering when others made this decision for their LOs and at what stage they deemed this necessary? 

My situation with my dad was different because my mom was his caregiver. Had she passed or been unable to care for him I had a Plan B in my back pocket and would have placed him immediately once he was diagnosed in the mid-stages. 

Did anyone start with home help first or just go right to Assisted Living? 

My mom had some in-home aides for about 6 months before she placed dad. For her, in-home help wasn't the solution she'd hoped. The agency sent out a few duds at first-- the best HHAs tend to already have as many clients as they can handle. Some didn't seem to get dementia, one stole some of my mom's jewelry and one just wanted to do housekeeping stuff. Plus it was expensive and their funds were not unlimited. Five years ago-- pre-COVID-- mom was paying just over $30/hour with a 15 hour/week minimum. 

 Did parents fight the decision or welcome the help? 

Both fought it. Mom blanched at the cost. Dad had lost much of their nestegg day trading in the early stages of the disease when she was in denial and blowing off my urgent pleas to get him off the computer. 

Dad resisted care in the home. We introduced the HHAs as being there for my mom who had recently had TKR saying they were doctor's orders and paid by insurance. Many of the HHAs were recent immigrants with heavy accents and dad just couldn't process what they said to him. 

Was the decision discussed beforehand (not even sure they could still have a meaningful conversation about the topic at this point).  Is it better to have them tour the facilities if possible so they feel like they are the ones in control, making the decision?

Oh hell no.

It's possible at least one of them has anosognosia which is a condition in which a PWD is unable to appreciate that they have had a loss or cognitive skills. They don't know what they don't know. In their minds, they are as capable as ever and trying to reason with them otherwise will just feed into their paranoia. 

It's best to tour several facilities to get a sense of what is a good fit. The facility should be located near whomever is POA or guardian. Don't make the rookie mistake of moving them to a place in their current community. As the disease progresses, their local friends will pull away either because it pains them to interact with PWD or because they have their own stuff going on. Plus, the POA will need to be able to easily monitor care in the facility and meet the ambulance at the ER when those inevitable trips start. MCFs do not send a staff member to the ER, so your LO will be alone until a family member gets there. 

HB

Haron

Thank you for the links!  Full of great information.  I've shared with my siblings to we can all better understand the disease(s)

Haron

My husband and I are meeting with an elder lawyer in March to discuss what, if anything, can be done with POAs and/or guardianship.  I am also looking at Assisted Living/Memory Care communities near their current home and will visit as many as we can or have a sibling go on a tour.  The most important items for them are being able to control their own heat and the food!  They will most likely not participate in many activities so quality of meals is a big deal for them.

After talking with my siblings yesterday, not everyone is on the same page and one sister who lives closest to them wants to go down the HHA route (they have coverage for up to 4 hrs a day, 200 visits a year).  I don't agree with this path but since no one has POA at this point, I can only continue with researching and finding a suitable facility when this avenue has been exhausted.

Thank you all for the advice so far!

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MN Chickadee

Given that it will take some time to get the legal paperwork in order and name a POA or guardian, perhaps let the sister go down the home health route for a while. It certainly can't hurt for them to have some extra oversight right now, and perhaps by the time you get POA it will have become clear the HHA route is either not enough care or is just too much of a headache to orchestrate. There can be a lot of denial in the early to mid stages, often born out of grief and fear of what is coming, where some family members just can't wrap their heads around what is really happening and make the right decisions. I  would lean on your elder law attorney for advice. You might also look for a geriatric  care manager to help navigate both the decisions and also the sibling dynamics if you continue to be in disagreement. Your local chapter of the Alz Assoc may have a social worker on staff who could also lend some advice or even mediate a family meeting to get on the same page. 

Assume your parents cannot reason or process your logic, you will not get their permission or buy in for any of these decisions. Find therapeutic fibs and work arounds. I wouldn't bother with AL unless it is enhance, high acuity AL that has dementia specific training, higher staffing ratios, is a locked unit, and is very much a dementia unit. Al can mean different things in different states when it comes to licensing, but generally speaking a regular AL will likely be a disaster given what you are describing and their care/medical needs. My mother's facility was licensed as an enhanced assisted living but was more like a nursing home than AL. People aged in place there and stayed until the end. They had the hoyer lifts and far more hands on medical care than an AL. The medical oversight from the nurses was so much better than she would have gotten at home.  My mother entered it in the middle stages when she was still walking and active and declined in place. The staff ratio for aides in the actual assisted living wing (think light housekeeping, meals, and one daily wellness check) was something like 20 to 1. In her memory care enhanced wing it was 7 to 1 plus extra staff dedicated to activities. As long as you are going to the trouble to move them, make sure you move them to the right level of care. Evaluate based on their worst days and the days that are ahead. 

harshedbuzz

Haron wrote:

My husband and I are meeting with an elder lawyer in March to discuss what, if anything, can be done with POAs and/or guardianship. 

I hesitate to mention, but will you need to be discussing Medicaid planning? Most families pay for their parents' care by selling their home. Do they have the funding at hand to pay for their care or will they need Medicaid at some point? FWIW, 5 years ago my dad's MCF was $7200/month out-of-pocket. A double room would have been less expensive per person but not by much. Another question for the CELA, if Medicaid might be needed is whether Medicaid will fund a MCF; my state does not. Another piece to Medicaid is that many facilities have a limited number of Medicaid beds set aside for those residents who have been self-pay for 2-3 years. When you tour, if Medicaid needs to be factored into the decision, ask about this. 


I am also looking at Assisted Living/Memory Care communities near their current home and will visit as many as we can or have a sibling go on a tour.  The most important items for them are being able to control their own heat and the food!  They will most likely not participate in many activities so quality of meals is a big deal for them.

The subject of what to look for in a MCF comes up a lot here. You could probably do a search for past threads on the subject. FWIW, I have never ever seen anyone mention climate-control as a priority. (Dad's particular diagnosis came with being cold all the time. His room did have controls, but I don't know that he knew how to work them as they were different than those at home.) Most people touring want to know about Medicaid, fee-structure (some are one price/all-inclusive while others have tiered pricing), what sort of staff/resident ratio they have and how weekend staffing is covered, what sort of training they offer (Validation, Teepa Snow, Naomi Feil are all good answers), what their staff turn-over is like, what's the expectation for aging-in-place (most places will expect family to add private caregivers/hospice at some point), whether they have affiliated doctors, dentist, podiatrists, OTs, PTs and SLPs available and under what circumstances would a resident be asked to leave. Since you have 2 PWD you'll want to know if they have a double room or if they'll need to each have their own. I'd also ask in which circumstances would they move them into different areas of the facility; this can happen if one spouse "interferes with" the care of the other.

Food is important. IME, most of the food offered is "healthy heart" and may not be to their liking. Dad's MCF's food wasn't great but they always offered an interesting afternoon snack and would bring him a different offering if he was unhappy. One advantage to being so close was that I could bring him lunch a couple times a week. Either a portion of a favorite homecooked meal or a fast food option that facility didn't offer like Chik-Fil-A or a pizza. 

After talking with my siblings yesterday, not everyone is on the same page and one sister who lives closest to them wants to go down the HHA route (they have coverage for up to 4 hrs a day, 200 visits a year).  I don't agree with this path but since no one has POA at this point, I can only continue with researching and finding a suitable facility when this avenue has been exhausted.

Victoria offered some excellent advice about legal liabilities and such. Another piece to consider is that this plan you are cobbling together could be taken off the table in a heartbeat. The ideal setting for your mom and dad seems to be a MCF. Most MCFs require the PWD to be ambulatory and self-feeding upon admission to the community. If mom breaks a hip or dad has a stroke, the option of placing them together in a MCF is off the table. A SNF will be the only option to keep them together. SNFs tend to be much more expensive and if they're on Medicaid, the second person will need to require that level of care to have it paid for. Otherwise, you risk them being placed separately. 

Thank you all for the advice so far!

As someone new to this, I can appreciate that it's hard to hear.

HB

Haron

Harshedbuzz - Thank you - some great questions to ask!  I am unfamiliar with how Medicaid works in NY as far as MCF so have to do some research or get advice from the lawyer on this.  My parents do not own a home (they sold their home in 2020 and we advised them to rent instead of buy another home...think this worked out for us!)  My parents do get SS and my dad has a small pension so between the two of them, they do not qualify for Medicaid so I'm guessing they will have to use whatever savings/investments they have to pay for care until they get to the $2k asset limit.

I'm not sure but think that once that happens, their monthly income would go towards MCF expenses and whatever they could not cover would then be covered by Medicaid?? with the exception of health care covered by their UHC/Medicare coverage?

I don't know how any senior could afford the cost of care otherwise!

Right now, both parents bathe, feed and dress themselves.  Since getting out of the hospital, my dad has been taking his meds and I see an improvement over the past week.  His blood sugar was high (over 200) and he had run out of his cholesterol meds.  I have managed to get all the meds he needs delivered and get him back on track so hoping some of his recent brain fog/forgetfulness will improve a bit.  He does still have his car but I have taken the key so he cannot get in the car and drive. off somewhere.  They have had 3 big moves in the past 3 months so think this has also contributed to their confusion (NY --> SC -->NY).

I don’t want to make mistake of moving them into a type of living situation that is too “advanced” or “above the scope” of their current abilities (not sure if I am using correct phrasing here?  My sister told me today that the Dr. said my dad was in stage 1 dementia so I believe some of the recent behavior we witnessed could have been attributed to other levels being off (blood sugar, cholesterol, etc).

I will definitely visit a few senior living communities to have a plan in place should it be needed sooner rather than later but also want to make sure the right type/level of care is being considered.

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harshedbuzz

Victoria2020 wrote:

Stage 1 Dementia is no sign, normal in most description lists- which seems odd since the Dr put him on a dementia med.

Sounds like the doctor was using a 3-Stage Model. Both of dad's neurologists and geri-psych used it. 

This compares them.

Stages of Alzheimer’s Disease - HelpGuide.org

The saying is you plan living for their worst day- not their best.

AMEN!!!!

Don't do the medicaid financial planning on your own -- you really should use an Elder Law attorney as there are techniques that can maybe save assets to benefit both spouses if done properly.

Yes. A CELA may be able to create a trust which could qualify them for Medicaid sooner. 

CaliforniaGirl-1

You are not the only one whose parents are refusing help. Many people do not accept any help in the home or really consider a move long after it is evident that they need help.  And to some extent your hands are tied if they are actively refusing help unless you can get the courts involved. It is very hard for the family members,l

We planned and researched and tried to hire help for the home and propose senior communities for a long time with no success. It took a precipitating event, a fall, to get my LO into a safe environment, And that turns out not to be unusual, taking a precipitating event to allow family members to make changes.

There are lots of people in AL with dementia and memory/cognitive issues.  Different places have different standards for when someone needs to move to MC. And unfortunately most people are not at one single level cognitively. They may be more high functioning in some areas than others. The one line that I have seen is that if resident is mobile and exit seeking and has a risk of getting lost or needs redirecting and won't accept it, they will want them in MC for their own protection. The ratio of caregivers to residents is better in MC and some places may suggest that the family needs to hire a caregiver or aide to be with their LO if they want them to stay in AL after the facility thinks they need to be in MC.

It can really feel very lonely. But there are lots of other people going through the same thing. If you call your local Alzheimer's organization they probably have local support groups that meet either virtually or in person and that can be very helpful.