After Independent L and 2 ALs, they are back at home!

SeekingSerenity

 My Mom (88) and her 30-year companion Jim (97) lived with us in the MIL-suite downstairs from 2008 -17 when they agreed to go to independent living and we would downsize from a 6-bed, 3 level to a one level 3/2/2 cluster home. My DH and I  were looking forward to this change. I’ve been retired for a few years and DH is still working a very stressful job from home but getting closer every day to retiring.

 By this time, Mom had already given up driving, banking, cooking and filling the medicine packs. So I knew I would be going to IL a few times a week. Jim is 125 pounds and getting weaker but his only real issue is being legally blind / wet mac which requires 4 kinds of eye drops twice/day. Up to that point, Mom had been doing the drops for him but that eventually became too difficult. He has no memory issues.

After a year we noticed that Mom lost her desire to make friends or go to the dining room or scheduled entertainment (paranoia). Five months later we moved them to an AL but it was the first day of COVID lockdown and we had 1 day to move them in and couldn't go back. Luckily they had connected rooms to keep each other company. Because of Mom's agitation and isolation with a window to nowhere and paranoia with CNAs, 8 months later we moved them to another AL. Again still during COVID, we had one day to move them in and then no visitation for months. At least this time there was an accessible window.

The new dining room was still closed and they ate every meal from a styrofoam box in their rooms and Mom’s paranoia created problems again with the CNAs. This is where she was first prescribed Seroquel (12.5 once/day). About this time, she was losing the ability to use the TV remote, phone or do anything timely. And she also lost the desire to get out of her PJs.

After 7 months of frustrations and wondering what we will do when their money runs out, we moved them back to the new house in March to save money for when we can't take care of them anymore. Mom was never formally diagnosed or tested for dementia except for the MMSE test that the PCP gave her. At this point, we would like to know where Mom is in the 7 stages of dementia. Recently a few times she woke from her afternoon nap thinking that it was early morning. She asked why I was serving roast beef for breakfast and verbally attacked us for “lying” to her. I’m assuming that is a form of sundowning. We are now giving her Seroquel 12.5 twice/day. She always appears to be either angry, depressed, disagreeable, stubborn, accusatory or spiteful.  And Jim is just the opposite – easy going, agreeable, and positive. Mom’s short-term memory seems to be getting shorter and shorter. And the incontinence doesn't help..........

Luckily they never gave us a problem with any of the moves. We just took charge and made the arrangements. Being their POA also simplified the process. We know now that IL was not the right place for them. I guess we were in denial about the real situation. I do have a brother 8 hours away, but he will never be able to help with anything.

For now, we would just like a clearer picture of where exactly we are …what kind of tests can tell you that..…..thank you to all of you out there who consistently offer encouragement to all of us on this journey! 

Battlebuddy

    Good Morning! Taking in two people is a lot. I admire your determination to give your mom and her partner good care. The financial planning of this disease is so hard isn’t it? 

     It sounds like your question is a staging question . You didn’t really give enough symptoms to get a clear picture of where your mom is . Short term memory issues can happen anytime. But you mentioned incontinence which usually shows up late in strange six. 6D to be exact. The  description of your mom being spiteful, etc sounds exactly like my DH . He is also at 6D so if I was guessing that would be where I would place her. Hope that is helpful.

M1

SS, if you Google Tam Cummings seven stages of dementia, you will find good descriptions of the different stages. Someone else can give a link. Urinary incontinence starts jn 5, fecal in 6. 

Her seroquel dose is very small, you've got lots of room to move up on that. Might be worth a discussion with her doctor. Good luck.

JJAz

SeekingSerenity wrote:

For now, we would just like a clearer picture of where exactly we are …what kind of tests can tell you that.

Unfortunately, no tests will tell you how much longer your Mom has on this journey.  The trajectory of the disease is a more likely predictor.  Has she gotten to this point quickly or slowly?

My Dad (no dementia, then 88) and step-Mother (dementia, then 87) were in a similar situation that you describe.  Dad was never satisfied with any of the IL or AL facilities where they lived the last few years, mostly because she was constantly angry and confused.  She lived until 91 before she died of cancer (with advanced dementia).  Dad then moved in with me and lived with me for 5 years and died at at 97 while I was also caring for my husband with advanced Lewy Body Dementia.  Remember, your first duty is to care for yourself and your husband.  Don't let caregiving ruin your lives.  If Mom and friend run out of money, that's what Medicaid is for.  Bless you for what you're doing.

JJAz

Also, your Mom may benefit from and SSRI anti-depressant.  Our doc said that as the brain shrinks from dementia, the nerve cell synapses have difficulty making a connection and the SSRI helps them, even with dementia.

Emily 123

Hi there,

 I think there was a recent thread about the testing on here if you want to hunt for it. 

I too like the Tam Cumming's website--there's actually a pretty detailed checklist (note that DBAT is for AD, and there's another one for FTD).  Here's the link, or you can navigate from here to the 'stages' list.  You do have to provide an email address to access it, but it's easily unsubscribed from. 

https://tamcummings.com/sign-up/

You mom's had a lot of moves during a very unsettled time, so perhaps her agitation is partly from that and she might be able to settle down once she has a routine.  

It wouldn't hurt to get her a neuropsychology work up given the behaviors--they can help manage those, and they can do the memory testing at the same time. There are actually an array of tests that can be selected and a thorough assessment would incorporate several of these to give a clear picture of what areas are affected.  My mom's did a series of tests over about 1.5 hours, with results graphed by she was scoring against her age /education cohort. So--good cognition, terrible memory. She scored with mild dementia, but her day to day inability to know date/time, weather/dressing, and some incontinence that is probably more than just a hyperactive bladder make her a moderate/stage 5 presentation.

 I wouldn't get too hung up on the testing scores as they're more useful to track the progression but not the day to day behaviors.  I think age at onset and what parts of the brain are affected plus the cognitive reserve makes matching a score to how they're expressing the disease pretty hit or miss.  Good luck!

jfkoc

You have taken on a big job and rather than knowing a "stage" I suggest concentrating on making their life comfortable. ...getting on their "page".  

The stages all overlap and each person's journey is different and each behavior needs to have its' own care...individual.

Take time to read some.....books by Naomi File or John Zeizel. Take time to go online and look for Teepa Snow. Sometimes we can get ahead of a behavior.

Please let us know how the adjustment to the new living arrangement is going for them and for  you.

SeekingSerenity

Thank you for all your advice and comments. I was very familiar with Teepa Snow....how demonstrative and awesome is she!! I did take the time to watch Tam Cummings and check out her website.....very informative.

We now have an appointment with our local MC with a neuropsychologist for testing but it isn't until Jan. 2022. I'm ok with that since the disease advances slowly anyway. From the description of the 7 stages, I figure that my Mom is around 5 - give or take.

Does anyone have any insight on the following: Mom is just under the Medicaid income limit but if, in the future, she kicks in her long-term policy again, she will be over that limit. Am I correct in assuming that the policy is considered income? Does anyone ever forgo using the policy in order to stay under the limit?  Just trying to figure out the future financial plan if my husband and I got to a point that we couldn't take care of them ourselves.............

Cynbar

I am not an attorney or accountant, but here is how I understand the issue of counting long term care insurance benefits as income. Policy holders usually get payments and then pay the facility or home health care charges. They will get a 1099 for tax purposes, but then they deduct the medical expenses. It only becomes an issue if the payments exceed what is being spent for care. That is unlikely to happen, with the cost of facilities and in home care so high.

As far as the stages, I understand your wish to know where your parents stand, to have some idea of what will happen next. Unfortunately, that is hard to do, since each person's journey is so different. Certainly go ahead with the testing and evaluation you have scheduled, but just be prepared that it is unlikely to give you the clarity you are seeking. Sometimes the progression moves faster, sometimes slower, some people jump around between stages. Uncertainty is a big part of this caregiver journey we are on, sadly.

Quilting brings calm

Why would someone choose not to use long term care insurance that they have paid for and go on Medicaid?  You don’t get to leave it to your kids for their use.  I would also wonder why Medicaid would be willing to pay  for long term care that an insurance policy is going to waste for.

SeekingSerenity

Well we were always under the impression that using a long-term policy was considered income for the patient (which it is as Cynbar explained) but with the medical costs deducted from the income from using the policy, it most likely would NOT jump us over the Medicaid income limit.

I'm assuming that if that were not the case, anyone  would have the option to use a policy or not if it puts the patient over the Medicaid limit preventing one from using Medicaid to keep a LO in the care of a facility.  Of course at that point, the family would have to be prepared to start spending down in order to get on Medicaid. 

Am I understanding this correctly?

SeekingSerenity

Quilting brings calm wrote:

Why would someone choose not to use long term care insurance that they have paid for and go on Medicaid?  You don’t get to leave it to your kids for their use.  I would also wonder why a Medicaid would be willing to pay  for long term care that an insurance policy is going to waste for.

No....lol...you definitely don't get to leave it to your kids.....but now that Mom is back home again, my family has to wonder if we'll be able to keep her payments on the policy going until she makes another claim and enters another facility and if she will have $30,000 for the first 3 months of MC before that policy would kick in again which is the standard requirement on these policies. If we are lucky enough to hang on to the policy, then we have to figure out if  she will be able to sustain $9,000/month thereafter since her policy only covers $3000/month..........and we know that MC is about $12k, don't we?

So it's not like the policy would be going to waste. There are still costs involved once you open a claim on a policy like this. It's not all free and one must decide if there is enough cash available to sustain all costs......or start spending down and forget about the policy. Anyway, that's what we've been led to believe.........someone please correct me if I'm wrong....this is a journey full of red tape!

Quilting brings calm

I am sure every long term care  policy is different.  We haven’t had to investigate ours yet and my parents don’t have any.  Ours has a 6 month waiting  period.  It also can be used for home health care assistance.  The rate per day for that is lower of course since  costs are also  lower. Once  we start using ours, the premium is suspended.   You might check your parents policy and see if home health care is covered.  Might help you keep them home longer.

Is that $12,000 for both or for 1?  MC costs in my area are running about $6000 a month for 1 person.  Nursing home about $8000.  Central Illinois. 

M1

SS, I have to agree that if your mother is already clinically at stage 5, there may not be much to gain by pursuing testing six months from now. Doesn't hurt to have the appointment, you can always rethink it as it gets closer, but I agree with Cynbar that it probably won't add much to her care. Seems like the practical issues of where they need to live and what supports are more pressing. Good luck with all of it-

SeekingSerenity

Yes it is $12k for one in NC. I've heard that it's more expensive in the South.

Yes no two policies are the same. Mom's doesn't have coverage for home health but she does have a benefit limit that is lifetime unlimited. But again, that only works if one has all the funds necessary to pay the first 3-6 months and the difference monthly forever. She bought this 30 years ago from American Express which at that time was a great policy, but by the time you need it the prices are off the charts......unless one pays outrageous premiums for a lifetime. 

We are seriously thinking about dropping the policy because we wouldn't be able to pay the monthly differences totaling $102,000/year when we use it again. So why pay a $1500 premium for a benefit that you won't be able to afford for long? This is why we brought them home. We saw their money evaporating and realized that if it goes down so far, they would be sent back home with nothing left for home help, etc. So now we have a lady coming in 11-2 on weekdays. She gets them up, gives breakfast and pills, showers twice/week, cleans floors and bathrooms, changes beds when necessary. We feel fortunate to have her and she is willing to extend the hours when it becomes necessary. We have used agencies before but found them to be too rigid. We found "Jane" privately and like that either one of us can feel free to cancel if necessary.

We have resigned ourselves that this is our life for now. The whole subject mystifies me. Thanks for letting me vent..........it sure helps to hear about everyone's experiences!

SeekingSerenity

When I said "cancel if necessary".....I meant cancel for the day if something comes up.

Cynbar

This is the problem with most long term care policies ---- you will have to spend money to use them, which you may not have. You will have to look at the numbers closely, and see which way gives your parents more time in a good facility : spend down without the insurance and then go on Medicaid, or pay for the elimination period and then the uncovered costs. But another factor is that not all facilities accept Medicaid. The fancier ones often do not, and in some states (like my state of Massachusetts) memory care is only private pay, Medicaid patients must go to a SNF.  So, sometimes it is worth navigating the LTC policy quagmire so they can be in a good facility for at least awhile.

SeekingSerenity

Yes, Cynbar you are spot on! That's exactly what I've been trying to say but not as eloquently as you have. This is what we've been told after having been in 3 facilities already. It also appears that if you self-pay for at least 2 years, the nicer place where you presently are may sometimes keep your LO for the income they have after they spend down and only if they have a Medicaid bed available. You are right....it is such a quagmire! So many people are led to believe that a policy is the end all when it is only the tip of the iceberg! 

Thanks for writing!

Cynbar

It sounds to me as if both your parents would qualify for nursing-home level of care, if and when you decide a move must be made. You may want to start working on a plan for that, even if it is your Plan B or C or whatever. All of us are always juggling several balls in the air at once! Plus, they will likely continue to decline, that's just what happens as people age. The better nursing homes are really a class above the other homes, but of course also are the hardest to get into. Do your research and identify which those are. Your parents will have a much better chance of admission if they have several months of private pay to start, even if the home technically accepts Medicaid from new residents. I have seen people keep their LOs in private pay memory care here in Massachusetts as long as possible until they run out of money, but then be surprised because they don't have a choice of the best nursing homes. This usually doesn't end well for anyone.

Salsam

Would the policy pay for in home providers?  I cared for my uncle with Dimentia for one year...brought him to another state, and had to look to find a Home Health agency that would honor his policy, but they paid my provider, who was also a relative.  Plus they sent me providers from their agency. 

At the end, after he had a stroke, Medicare paid for Hospice, and the Long Term Care policy paid for 24 hour care, and I paid 3 relatives, and once in a while I had a person from their agency that I didn't know well. (this situation only lasted a month) 

The policy got a good deal, because most of the time it was cheaper to pay 40 plus hours of provider care than it would have been to have him in a Long Term Care facility or nursing home. 

If they are in your home, either you or somebody should be paid.  I don't think the policy allowed me to be paid, but my sister in law was not a direct family member. 

I just re-read and it sounds like the policy has you stuck between a rock and a hard place. 

I was lucky with my uncle, but we did have to do extensive testing--he drew clocks, answered questions about who was the president , and then we had to wait 6 months also.  When he died, and I ended up caring for my parents (who had no LTC policies) it was actually easier....I just paid providers from their pensions.  

It is so hard dealing with the disease, and then on top of that all this financial nightmare as well, contacting elder care attorneys, or learning about what Medicare and Medicaid pay for.

SeekingSerenity

Well, my friends, it has now been 7 months that we brought Mom and Jim home from AL. It didn't take long to figure out that my husband and I wouldn't be able to do it all ourselves. My cleaning lady/friend offered to come in 11-2 weekdays for breakfast, showers and some cleaning. That ended when Jim (97) fell out of the shower stall. She never came back.

Then I decided to try care.com. I went through 3 ladies and gave up on that source! I hired one just for showers once a week and she actually brought her overactive, curious going-through-drawers 3-year old for me to watch while she gave showers! And here I thought that was supposed to give me some free time - silly me!

And now we are working with Home Instead again just for showers once a week. This lady is much better and more experienced and we will probably give her more hours soon. I miss the 3 hours I had to myself with the 11-2 help and it also gave Mom someone else to talk to. The only glitch with an agency is that they aren't allowed to do eye drops or put hearing aids in. And those are 2 problems here. Jim is legally blind and does 3 rounds of drops in AM and PM. Mom (89) can't hear and needs her hearing aids or we find ourselves screaming all day. BUT lately she insists on keeping her nails about an inch long - refusing to cut them - and of course, that makes it impossible for her to do the aids. Do we think she is purposely doing that so she doesn't have to put them in?

They are home 7 months now and it feels like 7 years........I feel guilty even saying that. Did anyone else go through multiple home helpers?  

Seeking Serenity.........

dayn2nite2

I'm sorry, but 2 impaired people, the falls, the behaviors associated with dementia and aging and the issue getting and retaining help all signal they are past the end of being able to stay at home.

No, she is not "purposely" keeping her nails long to avoid putting in the hearing aids.  

I don't believe in going down with the ship.  Save yourself.

SeekingSerenity

I get it.......my husband and I would welcome the thought of finding a nice place for them but the reason we brought them home again in the first place was $$$. At $10k/month for 2, we saw it flowing out like a river! And with 2 years max of assets, we brought them home thinking that it is better to come back with $$$ than without so that there would be $$$ to take care of home health. Then as luck would have it........the need for extra help (wet beds, wet floors, vomit) would always be outside of the 11-2 hours of help....and I would get stuck doing it anyway.

Then you find out that you're not equipped to give showers with support, or pick up dead weight from the floor (had to call EMT once already to get him up), or deal with the paranoid issues and incontinence, or having to change channels constantly because one is blind and the other's brain can't operate a remote anymore, or do eye drops 6 times a day........not to mention the cleaning, cooking, laundry, appointments........and take care of her bloody cat - litter box and food - 6 times a day.

Now I'm sounding resentful and I don't mean to. The truth is we are 69 and 74 and winding down ourselves and wondering when our retirement begins and who will take care of us when the time comes and will there be enough $$$ after witnessing what the reality of the cost is.

Sorry for whining....we are just at our wits end after living with them for 10 years and then moving them from IL to 2 ALs and home again and wishing there was a way for them to qualify for Medicaid so we can place them and not worry that they will be coming back because of $$$.

Thanks for listening............

loveskitties

Seeking,

Have you reviewed the Medicaid requirements in your state with a qualified agent or elder care lawyer?

Some AL facilities which take Medicaid patients, will take them as long as there is X amount to be paid out of pocket (or X months/years), and then when it is gone will take them as Medicaid patients.  They would then not face having to return to your home with no funds.

Might be worth doing some checking, since it doesn't seem the home care route is working for any of you.

SeekingSerenity

We have an upcoming appointment with an elder attorney on the 22nd. We hope it will prove to be very enlightening!

AlyJo

Please keep us informed.  I am afraid that I will be in this position soon with my husband.  I hope to find in home care as he begs not to go to a home.  I have retired (ha ha) to care for him but I am sure the level of care will grow as time goes on.  I see the progression daily.  

You don't sound like you are complaining.  You are being real.  At one time I quit monitoring this site because everyone was so positive and caring and never sounded frustrated with anything.  If I didn't love him I would have quit taking care of him years ago.  I want to stay for the long run but I also want to be sane in the end.  It may be too late for that ( but I will keep trying.  It is like I am giving up my life to care for his.  I guess this is my calling from God but I hope there is more.  

Regarding the neuropsychological evaluation, we did it 6 years ago and again this year.  I have POA since 2014.  I only did it so that I would have a doctors report saying that he can not make decisions on his own and needs a guardian.  His neurologist did not want to make that statement. I would change doctors but we are at a point where it is just daily care and comfort because there is nothing that can really help make things better.  

I am going to start looking for home health care now.  He doesn't think he needs it but I need someone to help and to get a few hours break without worrying about him.  ( tries to cook, falls, can't operate the remote, very upset he is blocked from purchasing things from the television, just wants to sit and eat chocolate.)

We have $$ for retirement but not enough to pay for a good long term care and provide for me.  He is only 62 and diagnosed at 55.  

SeekingSerenity

So here it is...............

We finally got to an attorney to discuss how to deal with the fact that their income will always be over the monthly limit for Medicaid. He said to get them into a facility that handles Medicaid, but self-pay until their cash goes down below the $2k requirement to apply for Medicaid. If the facility has a Medicaid bed available at the time of need, they will apply for them and keep them there. If, however, there are no beds available at that time, you either continue to self-pay or take them home until there is a bed available. 

He also said that you wouldn't necessarily have to start this whole process at a 90-100% Medicaid facility but if you initially enter an upgraded facility, they will be looking for 1-2 years of self-pay before giving up a Medicaid bed.

Did anyone hear anything different?  any corrections? or additions?

Thanks for listening...............