Need some advice.

Rather Not Say

Looking for some advice, my mother has dementia and I have been trying to get her services for the better part of the year. I have done eight fair hearings so fair with professional help unfortunately her total allotted care is maxed out at 22.3 hour for the week. I have been as her condition progresses I can try again to get her reassessed. What exactly are my options at this point? She has no money, and I cannot sustain the cost of live in care and my own expenses, and I need to work. I have no family support, as they have told me they do not want to spend their retirement years babysitting my mom. 

I have spoken with her doctors, social worker, MLTC case manger as to what I can do since her assessment shows that she is not a good fit for AL, and SNF with memory care is not an option since she lacks the skilled medical need. I have tried seeing what the ER could do, but my mother refused to eat and told her doctors that she would sooner die then go to a NH, and her blood will be on all our hands. She was in the hospital for five days full evaluation across the board. She did not eat for the entire them, they kept her going with ensure and IV, but during that time they would unable to find her placement so I took her home since I did not want her to starve herself to death, she is fully capable of doing so. Looking back I know this was a mistake since the hopsital social workers told me they would still help me after the fact by sending our her assessment to places while I keep her at home for the time being. This was a lie, I know that know I feel for the trap, even still my mother was not eating and she most likely would have died since she is weird one. 

When we got home she went back as if nothing happened, she was clearly very hungry though and ate her fill. I love my mom, but I cannot do this but it seems like the system is not equipped to handle dementia. As per my fair hearings I was told medicaid is not meant to provide optimal care, only adequate. The judge told me it is not meant to take the place of poor planning on your mothers part. Hurtful, but I get it, that said I am in a weird position cause based off her MLTC assessment, her PIR states she cannot be left alone for 0 hours, yet they deny her coverage since her aid falls under safety and supervision. Yet I have also been told my own others and my own legal team, if I leave her alone and something were to happen I am responsible. So what exactly do I do? Her MLTC has told me they will not cover the cost of a facility since she does not yet me the requirements. As they told me she is at the familial stage that wonky grey area where she is still capable yet not capable. 

What people do not seem to understand is family does not want or needs to help me. I feel stuck and I am greatly confused. The hotline suggested I reach out to the forums. I am getting to the point where I have lost all will to live, I should be enjoying my 20's instead I am taking care of my mother because my family wants to enjoy their lives. I am bitter, confused, and angry. I welcome any and all advice. 

Another Day

I know what you are feeling. I posted on here yesterday because I also am at the end of my rope. My husband is mid stage, I think, as of yet he is undiagnosed. How is it that our loved ones can act/seem normal when the situation warrants it, then go back to bizarre behaviors once back to us and them? I'm also looking for answers and that's how I wound up here. It's reassuring to know that we are NOT alone in this. As for my action plan, I pray a lot. That's probably how I got this far without losing it.

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dayn2nite2

You are correct that a mistake was made when you took her home from the hospital fearing she would starve to death.

Your mother seems to have a manipulative behavior system that works with you.  Lesson learned.

I think the only thing you can do is the next time she is hospitalized, simply refuse to take her home and tell them she needs to be placed because she will be alone at home.  Doesn't matter where - do not put any restrictions such as distance or type.  She needs to go where they take her because of her behavior.

Do not agree to any feeding tubes or IVs.  If she decides not to eat, that is her decision.  

That is the only way you will be able to get out from under this.  You will not get more care hours at home.  Your only hope is placement and it looks like the best hope is placement from hospital directly to facility because the burden is on the social work team to get her out from under them.

Ed1937

I'll be the third to say you need to get her in a hospital, then refuse to take her home due to safety issues. They might tell you that you have no choice but to take her home because she is being released. They are bluffing. It is up to them to find a place for her, but they will likely try to pressure you to take her home. It is critical that you keep telling them you will not take her home because of safety concerns. I'm sorry.

harshedbuzz

There is another option no one has suggested yet.

That would be to have state take over responsibility for her care. There was a poster called "Hawaii Girl" who did this with her mother who had dementia and mental illness. HG lost a say in mom's care, but she was able to return to her own life.

HB

Rather Not Say

Is it common for families to struggle with getting care hours? As her therapist explained to me my mother is not manipulating per-se she is simply expressing in the only means she knows how. She is scared, she is happy where she is, everything she remembers and can recall is for the most part in this community. This systems greatly confuses me even with doctor documentation nothing seems to work to get an increase in care hours. Yet, placement is an option, isn't placement more costly across the board? Also from what the social worker told me when she was in the ER, if I left her to starve I could have faced trouble since they would have to report that I refused to take my mother in despite them no longer having a medical reason to keep her, and at the determinant to her health and wellbeing. Was this also a bluff? How do I address this if they use this line on me again? Also, the social worker at the ER told me it is not the purpose of the ER social workers to place family members that the family  find too hard to deal with. I appear to getting mixed messages, like I have been told from a medical POV it is fine to leave your mother alone with proper safeguards in place, yet in the same breath I told if something were to happen I am responsible. Her doctors are telling me she is doing well in the community, why take her and force her to try and readjust in a place that will most likely not be very close or even be the proper fit for her. Are their alterative means of funding care outside of Medicaid?

Ci2Ci

harshedbuzz wrote:

There is another option no one has suggested yet.

That would be to have state take over responsibility for her care. There was a poster called "Hawaii Girl" who did this with her mother who had dementia and mental illness. HG lost a say in mom's care, but she was able to return to her own life.

HB

I am in a very similar situation as the OP, about to face the MLTC application process, fearing the same outcome. When I questioned a SNF (in FL) about what would happen if MLTC was denied, so the PWD had to become ward of the state. The SNF admin coord said that the state then becomes the person to make LO decisions but that the state does not pay for her care. Shocking that there is little to no hope in these situations.

Ci2Ci

Rather Not Say wrote:

I have spoken with her doctors, social worker, MLTC case manger as to what I can do since her assessment shows that she is not a good fit for AL, and SNF with memory care is not an option since she lacks the skilled medical need.

...but I cannot do this but it seems like the system is not equipped to handle dementia. As per my fair hearings I was told medicaid is not meant to provide optimal care, only adequate. The judge told me it is not meant to take the place of poor planning on your mothers part. Hurtful, but I get it, that said I am in a weird position cause based off her MLTC assessment, her PIR states she cannot be left alone for 0 hours, yet they deny her coverage since her aid falls under safety and supervision. 

...I am getting to the point where I have lost all will to live. 

With all of my heart, I wish that I had some great advice for you or had  won the lotto to help. But, alas, I am in a very similar position, except that I am just about to apply for Medicaid LTC -- fearing the same result as yours. I quit my job to be 24/7 caregiver for the past 15 months, but can't continue b/c of LO's [new] increased level of care. 

It isn't even about you wanting to "enjoy your 20s", it is that doing it alone is extremely difficult and will break you. *sigh*

Sending you all the positive vibes that I can muster.

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Rather Not Say

Here when someone is living outside of a facility they say they are loving in the community. My mother was in the ER, and she spent five days doing a full work up, was also looking for placement at that time. They were unable to find placement, and she refused to eat while in their care. She told the doctors she would sooner die before going to a NH, I caved and took her home since I did not want her to starve herself to death. 

Her doctors say she cannot be left alone, the MTLC medical team that handles the assessments claims she is okay to be left alone, and does not meet the requirements for Medicaid Funded placement. Only care she gets is 22 hours a week, I have been trying to get her more but time is based around how long it takes to complete the tasks she needs help with. During the other time according to the MTLC the aid can leave food out before leaving and my mother can be left alone until I get home from work. Yet her personal doctors have stated otherwise, as does my legal team. Safety and supervision for whatever reason are not covered as such she can be left alone since she does not need active help with many of her ADL's and IADL's promoting and queuing do not count as an active need. 

That is mainly where the mixed messages come from, her personal care team says one thing, while the MLTC and ER team say another. It is like everyone has their own idea as what Medicaid is. 

CanyonGal

Rather Not Say wrote:

Her doctors say she cannot be left alone, the MTLC medical team that handles the assessments claims she is okay to be left alone, and does not meet the requirements for Medicaid Funded placement. Only care she gets is 22 hours a week, I have been trying to get her more but time is based around how long it takes to complete the tasks she needs help with. During the other time according to the MTLC the aid can leave food out before leaving and my mother can be left alone until I get home from work. Yet her personal doctors have stated otherwise, as does my legal team. Safety and supervision for whatever reason are not covered as such she can be left alone since she does not need active help with many of her ADL's and IADL's promoting and queuing do not count as an active need. 

It seems like no one can come to a consensus on where your mother is at in terms of her dementia. She "sounds" like she is on the borderline of meeting the number of ADL's to qualify to meet the level of care where Medicaid would step in and cover costs but needs oversight. This will be a waiting game but eventually she will qualify, and it is difficult to know when she will reach that stage. What stage of dementia does the assessment team say your mother is at? What ADL's does she need to meet to qualify? 

"her assessment shows that she is not a good fit for AL, and SNF with memory care is not an option since she lacks the skilled medical need."

Nursing home care is pretty obvious - because there is usually a medical need where skilled nursing care is required. Just visit a nursing home and you can visually see where people are at physically and mentally and know immediately why they are there. 

I am not sure why if she qualifies for 22.3 hrs a week home health care and can be left alone for some period of time why assisted living isn't a good fit. Assisted living will provide meals, do laundry, handle medication, housekeeping, provide stand-by assistance with bathing/showering (fall risk) and provide activities. Some assisted living facilities provide extra services like help with transfer or dressing for an extra fee. However, the fees for this type of arrangement are not Medicaid funded - to my knowledge. 

There are some gaps here. Are you consulting with an elder law attorney? Do you have Durable Power of Attorney or Medical Power of Attorney to make decisions for your parent?

Rather Not Say

I am her POA, and yes your final point also confuses me. Unfortunately I have been told that what her MLTC states is gospel so to speak even if it does not make sense. As for why she is not a good fit they claim it is because her assessment states she needs a one to one due to potential behavioral issues, and need of constant redirection, and is wander risk. Also because while she is capable of doing tasks, she needs someone beside her constantly to do said task.  Though I replaced she is fine with myself and her current aid. She engages on her own and does activities on her own like tending to her garden. 

It seems the notation of a one to one is holding me back but your points are pretty much what I have been told. I have to wait till she progresses, though I am going to try for another assessment and see if I cam avoid getting the one to one direction removed. This entire system is confusing, but nature of for profit system. Ideally I wish it was possible give people what they need. Maybe I should lie about her needs and behavior I thought being forthcoming was best but ot seems my honesty is making her case more complicated.

Marta

Just a small correction:  Medicaid is not a for profit system. It is funded by us taxpayers. 

Having said that, your Mom is very fortunate to receive the 22 hours she receives, at the stage she seems to be. If you require more coverage, it will have to be you, or private pay. 

If we want better coverage for long-term care in this country, we can:

1.  Purchase LTC insurance 

2.  Vote for lawmakers who will prioritize LTC  

Rather Not Say

The for profit comment was aimed towards the entire system. Facility costs are insane. If I was private pay I would have none of these issues in my area. The only AL with MC that we have are private pay for most of the cost. I can use medicaid for the medical stuff care. Also long term care insurance cannot be bought after the fact, and even LTC insurance is not as robust as it use to me. Looked into policies for myself whole life policies are not aviabile in our state, and the max payout per day is 150 per day for a max of 7 years. Our state has higher than avg cost when it comes to facilities that have MC. 

Which is where my issues seem to lay because she has memory related issues it seems MC is my only option. The system is flawed when it comes to eldercare especially in this area. 

Is it wise up upload the assessment with redacted key info. Cause been reading the forums doing Google searches all things point that in most cases it is rarely considered wise to leave a PWD alone. Yet it appears unless you have a means to pay for care either through proper planning / other means or meet requirements you are left to either become a ward of the state dropped off at the ER and pushing the buck pretty much leaving your LO at the mercy of where ever she can go or have your family give up their own time to help. In an ideal world would love my family to help but alas they have no real reason to help which I get. This is not a burden someone will willfully jump into.

Yet everything I have been told given by officials seems to contradic the advised care for PWD. 

Marta

America has not been willing to pay for long-term care for the elderly. This is why it isn’t affordable and considered to be the family’s responsibility. 

Every family should be preparing. 

Rather Not Say

You are right sadly single parents often do not have the luxury of saving for their own future. That said I will be taking steps to make sure I am not left in the same boat, but that still leaves my mom hanging in the wind. I understand where you are coming from I should count my blessings I have something rather than nothing.

dayn2nite2

Unfortunately, the system we have is how it's going to be.  It often will not/cannot pay for long-term care that is appropriate for this disease.

Example:  After my mother had exhausted her available funds and I even gave her my retirement fund, my mother ended up on Medicaid and the only facility my state's system would pay for was SNF.  Home care was not an option at all, no MC, only SNF placement.  So SNF it was.  Luckily, we were able to find a SNF that took Medicaid and had a bed for her.

If her state is paying for that many hours at home now, then I would feel pretty fortunate.  It doesn't get much better than that.

I would again recommend that the next opportunity when she is hospitalized I would refuse to bring her home and tell them she will be living alone and it's not safe for her.

Rather Not Say

You are correct I am lucky to have what I have, it is simply a stressful situation. I do wish if it had to happen it was when I was older it is rough dealing with this and your first job out of school, while also working on a masters degree / professional license while juggling all this factors. Also greatly annoying when the system makes the assumption that you have family that is willing or able to help. Sometimes I guess I just need to vent, but everyone is correct next time she ends up in the ER will stand my ground, I just hope she does not pull the whole not eating thing, cause I will cave. I am not sure of any child that can watch a parent that gave up so much for them would simply sit back and let themselves starve themselves to death. I know she does these things because a part of her knows I will cave. She is my mom, of course I will cave. I know she does not want to die, I know she is scared, and I know she does not want to be a burden to me. At the same time she is also young. I know the system is limited, and when it comes to the ideal level of care many need it is simply just not the cards for states to pay for it. The tax burden would simply be too great, and I doubt we would even have enough caregivers even if the state was able to pay. Working with my boss ATM to see if I can extend my work from home options and reduce my office commitment. 

The ideal will be if I and my mom can hold out for a free more years I can send her the place she likes to go for respite. She has made some friends it is just the nearly 20k price tag is a lot, but if I save and invest properly I might be able to swing it. Since the place works with families after funds how dried up. You just need to show you have the funds to pay for two years min. They have grants and stuff that open up after two years. 

dayn2nite2

You are young and perhaps your mother has always used guilt to control you, but the no eating thing is pure manipulation on her part.  Of course she will use it again because it works.  

You can 100% count on her doing it again.  

Rather Not Say

Her therapist has told me not to view it as manipulation and more so a sense of expression towards an unfavorable situation. So I do not know it is manipulation in an inherently negative sense. As her care team has told me PWD often express the needs and desires in unfavorable or uncomfortable ways. Like when she was asking to go home, her team told me often such a statement could mean she ia uncomfortable with her current surroundings and needs a change of scenery. Her team told me the aspect of not eating and the comments she made could have been a product of her feeling as if she was being ignored and her needs not being met. At the core she is operating under a mindset family takes care of family. I wish I had the money and time to do so, and I know it hurts her that even her own brother and sisters no longer reach out or extend a helping hand. I am young and I would not say my mom has used guilt to get what she wants from me. She did a lot for me growing up making sure I had the best shot to reach my goals. This situation is more so a matter of I lack the means and a proper support system, though I am learning to cope without a lot of formal support. 

Much of my pain stems from how much family alienates PWD. Prior to her dementia we would spend every major holiday together with all our family in the area. Now they always have an excuse as to why they cannot come down, even when I offer to pay their way. I alone cannot provide the healthy social interactions she would benefit from. I am looking into various adult day programs and activities to see if she can possibly create new bonds or ties. Most social interaction she gets is when she has goes off fot respite care and she is able to hang with her friends and stuff the free standing memory care facility. 

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Iris L.

IME, our country is still operating under the assumption that older adults will die about five years after their retirement at age 65, so there would not be much need for long term care.  Unfortunately, depending upon how you look at it, people are living for many years after retirement, also early onset dementia is more prevalent due to more chronic disease. What to do?  The best way is to prepare years prior, but no one can predict the need.  What next?  Come to these boards and get advice from those who have been there already, because the outside world does not have a coherent response.  This is my personal observation after many years on the boards.

Iris

CanyonGal

My mom wouldn’t eat in the hospital, or rehab, or even when she was back at her facility for 7 months. I called hospice in due to the weight loss. When food was delivered she said she wasn’t allowed to eat it. She would only eat tomato soup for a couple of months. It was bizarre. When placed in memory care, she began to eat in the dining room with others, and there is some modeling with other people eating around you.

There are a few LTC (nursing homes) that have a memory care unit or wing. Perhaps they take Medicaid? It is frustrating to not get a solution. 

My mom’s facility is private pay and we were on a waitlist for several months before she was able to get a room. She had LTC insurance that I am using to pay for her care and we sold her home for care after the insurance funds run out. I know I am very fortunate to have those funds.

My siblings did a disappearing act leaving me to cope with my mother. It is not uncommon for family to avoid having to assist the dementia parent. I am pretty disappointed by the unwillingness to visit or help her unless it is asking her for money. 

You’ll find many of us on the forum have been in similar situations. It isn’t fair when one person gets the responsibility but we just keep plodding on as best we can.

Rather Not Say

Yeah I am looking into a few LTC that have locked down MC units that take Medicaid and do not have a wheelchair policy. Oddly enough you would be shocked how many Medicaid LTC facilities  have a wheelchair policy to reduce falling and wandering into others rooms and stuff. Made a few calls awaiting call backs to do a tour and see if she is a good fit. Though oddly enough I do find it strange how I have been told Medicaid facilities do not allow families to provide one-on-one care for their loved one. Was working out the numbers and was thinking if she does get placed and I no longer have to cover her food, utilities etc I could afford an aid to be with my mom for 12 hours. Sadly, when I bring this up many told me that is not allowed. I wonder why is that the case, they claimed it was for safety and liability reasons. I did reach out to our ombudsman to see what is the policy on that since that seems fishy imo. 

I have noticed that when I pick her up from the place where we do respite she is a different person. I see her having her mock cocktails at the bar with her friends, they showed me pictures of her getting her nails down with her friends. It is pretty heart warming to see, she brings her cello and plays for them also. It is amazing what the mind can retain even though it is sick.  Even if I place her I am going to still do the once a week respite care. I will not take those moments away from her for as long as I can.

Debsta

Hi and Happy New Year!

I'm a retired nurse and have seen dad every day for personal care for the past year and a half.  I've been blessed with the support of a nurse/friend who now helps twice a week for 2 hours.  

My dad is experiencing sundowning!  He awakens every hour during the night, turns the TV on at 100 volume and snacks each time on whatever he sees that looks appealing.  This was suspected by the PCP given dads wt. and confirmed by my brother who is now spending nights there.  Dad eats 3 meals during the daytime in addition to the night eating.  He comments that he just can't eat as much as he used to and doesn't remember that he gets up at night.

I am confronted with 2 concerns:

1.  How to guide dad respectively with food/portions available during the night.  He's 5'3" and weighs 205 (Athletic built in the past with muscle tone in legs there yet decreased).  Broad shoulders) - big belly-81year old).  I've tried hiding pieces of pie in the freezer as individual servings and he has spotted them. 

2.  For the TV volume I'm looking to advise my brother to obtain ear plugs and possibly a white noise app on his phone.  Does anyone have any other ideas for us?

3.  Has anyone found benefits with a Physical Therapy consult for an exercise program?  Dad is shuffling move and stopped walking on the trails that we had done the summer before.  He has RA that is managed and Alzheimer's. 

Kindest regards,

DG

Ci2Ci

Debsta wrote:

Hi and Happy New Year!

Debsta, your reply post is off topic under this thread. Consider copying/pasting it into a new Topic. Cheers.

Ci2Ci

Rather Not Say wrote:

The for profit comment was aimed towards the entire system. ...

I am so much in a similar predicament, as you with your mother. Especially in the need for secured MC unit. And, the tireless research ending in shock and despair.  My best strategy at this point is an active lotto ticket. Sad.

Cool that she likes the respite place. Is it an AL or SNF? Offers a bit of hope that your mother could thrive in institutional placement. (Would be great if we all had the opportunity for placement into a 'fancy' AL.)

Rather Not Say

It is a free standing memory care unit the place she goes for respite. Everyone present has either dementia or alzheimer's. Being as the grounds are 100% locked down and always monitored they are free to roam and do as they please. It is an interesting dynamic. They based it around the concept of a dementia village. It strives to maintain as much anatomy as humanly possible. They do have a SNF part but as they said that is mostly used for hospice not general placement. 

Wonderful places exist, but darn to they break the bank. It is funny dementia and alzheimer's itself does not discriminate but unfortunately the care does which is a shame. Cannot tell you how many times I have been called an entitled brat because I insist that home care would be cheaper and a far better fit for my mother at her current stage. Yet the system acts as if homecare is the most expensive option. I got a few call backs from LTC that have MC sadly the claim my mother currently is not a good fit, but If her assessment does change they said please do not hesitate to call back. Most stated they are worried about the need listed for a one-to-one akin to a paraprofessinal if any of you remember them in school, and were unable to provide one but have policies in place that do not allow for families to provide outside one-to-one care on a fulltime bases. They state If they accept a person in medicaid they agree that the facility itself can meet their needs without the need for the family to get involved. They recommend I look into private care cause they do not have to follow the same policy. Many families in private pay can and do provide their LO with their own aid.  

Love when you ask how to pay for the higher end places always comes down to the having money or pooling funds from your entire family. As they told me can you really put a price on your mother's comfort? 

dmered21

Hello,

I haven't read through all of the posts already created, but have you considered an Accredited Memory Care Foster Home. I've had my Mom in one for 6 years, and they have become my family. It's a 6 person max residential house. My Mom's SS and retirement income are ALMOST enough to cover the $3800. I never could have afforded a larger home, which are more than double that cost in my area. Also, my Mother has always been introverted, and would have been lost in such a facility. It's very homey, and they have Mom in a nice routine built around her interests. Perhaps contact your local Agency on Aging for someone who gives tours. They are sprinkled throughout neighborhoods, and you could never tell they are there. 

Mom is now in Hospice as well--still in this home. They work well together. 

Just a thought. Best wishes.

Dawn

PS: After reading the other comments, and seeing your mother isn't eating in the hospital setting, many of these residential homes have family style meals. They all sit together at a dining table, and can converse as they eat. Also, early on, my Mom was a runner. They put locks at the top of to outside doors out of her reach so she couldn't get outside. She could walk around the house, until she became too weak to do so. She would help with tasks around the house and bathe herself as long as she could. Now they feed her by hand with her soft mechanical diet. They take care of her bathing and toileting.