Where is the best place to start looking for help?
I have been taking care of grandma for 7 years and I need some help! I have looked on the web, called Alz. Assoc. for info and have even called her insurance co.
The insurance says she is not covered under home health aid and medicare says she is covered if she needs skilled nursing care. She doesnt fall under skilled care. She has no health problems whatsoever!
A friend suggested I apply for medicaid but I found the requirements and she gets too much money. (the cutoff is like $720 a month and she gets $760 a month.) I did find out that Medicaid offers partial coverage for qualifying families, but not sure what that consists of.
I do not understand why medicare doesnt offer some sort of Alzhiemers coverage. They even have mental illness coverage!
Is this as hard as it seems or am I not getting good information? I just need some help because I am at the point of desperation! She acts out when I take her ANYWHERE and would prefer if I just left her at home. (the only help I have is my husband, have to wait for him to get off work to even go shopping) I have 2 boys so I HAVE to get out of he house.
Also, what about when the time comes to place her in a NH or other facility? Do I call the NH? Her Dr? I dont even know how a person gets this all started.
Help please!

~Sweety

Medicaid and her insurance will cover the Drs. visits and testing for alz. in most cases. what they don't cover is the day to day care of because they call it non skilled custodial care. They say this even though anyt professional will tell you that in placing an AD LO in a care facility you need one that is specifically trained and experienced in the care of someone with a dementia causing disease/condition. Go figure.

What you may want to do is consult with an elder law lawyer to see how to best plan for her care. your profile indicates your grandma is in stage 6 which means she needs 24/7 care NOW!! You will want to check out what care facilities around you are suitable for her care. You should be able to get a list from the Alz. Assoc. Once you decide which is your best care plan you will need to use her money (and may have to seel her house) till she has only X amount left and Medicare will then pick up for her care. Please be sure to check what the regulations for Medicare are in your state as it varies from state to state.

Thanks Edyth for replying.

She doesnt have any assests. She gave her home to my dad and then he passed the following year so the house went to me. So basically all she has is her SS checks.
I had a lawyer draw up a Power of Attorney years ago. We have never needed it since her account is joint with me. (there is no money in it)

I did check the medicaid standard eligability here in NC and she doesnt meet those standards. But someone did mention that there is another plan where once you have spent all her money for the month medicaid may kick in for the remainder.

There is a facilitly that has been reccommended by a friend. IF the time comes that I must do that I would like her to go there. Not sure if I need to presue that now so I will have my ducks in a row.
Right now I am just looking for other alternatives to keep her at home as long as possible. I am with her now 24/7. She doesnt leave my side unless my husband takes over so I can run errands.
My perfect short term solution is for someone to help watch her 1 or 2 days a week so I can run errands, shopping, my own Dr. appointments and just a plain old fashion relief!
Seems like that would be cheaper than putting her on any kind of state funded program, full or part time.

What they do with my father is the Medicare takes his check and covers his care. They give him something like 40 a month for persoanl needs. Just check around and find a good care facility that is trained and experienced in alz. care, there are more and more of them every day. Make sure they take Medicare. You may have to show where all her money went in the last 3 to 5 years. Do not put any of your money in the joint account. It really is better to have your name put on the account as POA rather than a joint account. That is info too late for you but for anyone reading this it may help them.

Sweety,

I understand how difficult it is to find affordable in-home care, especially when financial resources are limited. Care outside the home as you referred to is also a challenge when the person, like your grandma, has behaviors that make their transition into group situations such as day care, more difficult.

But support and respite care is very important for the caregiver, even for a caregiver with good health and coping skills and some available family support.

If private pay in-home care becomes necessary, the speaker of a seminar I attended last week on this subject said that it costs LESS to hire someone yourself instead of going through an agency. Our nurse case manager suggested putting an ad in the local nursing school or at church, etc.

We are now getting home care without cost through medicaid. I just wanted to make a couple comments about medicaid eligibility.

I'm sure that each state has their own eligibility requirements, and although you have already determined that her income exceeds the requirement for medicaid eligibility in NC, medicaid has a program that allows for partial coverage. You illuded to it in your message, insomuch as the way it works is that when the person has used up what monthly income they have for care, then medicaid will supplement for the rest. Additionally, any out-of-pocket medical expenses, the home she lives in and one car are also exempt from income requirements. The money she uses for medical purposes are subtracted from income for eligibility purposes.

If your grandmother has a share of cost, that would mean that she would be expected to pay a certain amount before medicaid would kick in and pay for the rest.

Since her income is barely over your state's income requirements for medicaid eligibility (and she may still be eligible due to income exemptions and/or qualify with a share of cost),I would encourage you to go ahead and make an appointment with social services (your state's dept that accepts medicaid applications) and talk to them about her situation.

I didn't think my husband and I would be eligible but we were. My husband's income is social security of $867 a month, my disability income was exempt, and although medicaid has a rule about disqualification for 30 months in the event of property transfer (my husband unknowingly transferred his property to his daughter), we were still eligible.

IN-HOME SUPPORT SERVICES program (a medicaid program) pays for personal care needs. The number of hours received is based on what the individual needs are. Although my husband receives very little physical care support, I still receive 43 hours a month of free care for him. Your grandma would receive more since she does not have a spouse to do domestic services.

IHSS takes care of payroll. All you have to do is interview the referrals they give you, call their references, give instructions to the person you hire (just as you would any private pay home health aid), and sign their time sheet. If your grandmother becomes eligible for medicaid, YOU can also work for IHSS and get paid by the state for your grandmother's care. I really needed the hours for respite. But I hired a person my husband already knew (a neighbor friend) and my son also gets paid by IHSS. Even though medicaid was temporary in our case (my husband is going to be getting his resources back soon as a result of legal action), medicaid has been a god-send because it has allowed me to have time away to take care of my own needs and is paying for some of his dental, new glasses, and other medical needs. Since Medicare doesn't pay for medication, it is helpful for that too.

As far as nursing home eligibility EA gave good suggestions. If your community has a caregiver resource center you can receive a free or low-cost legal consultation with an elder law attorney or from legal aid. As you already know, since your grandma does not own assets she would be eligible for the state paying for NH. Even if she doesn't need it now, planning ahead will save you a lot of stress later on.

Your grandma is lucky to have you.

Cher

[ February 07, 2002: Message edited by: Cher50 ]

Thanks for the reply cher. Between Edyth and you I have some good info!
It looks as if my best option is to go to SS and see what they can do for us. I hope something.

I am still surprised that medicare doesnt have some sort of policy plan for Alz. Isnt this a disease? Why is it treated so differently?

again thanks for your reply!

~Sweety

Sweety,

I had a similar situation with my Dad's care needs and finances.

When in-home care was still feasible, I applied to the county Social Servces for Medicaid (called MediCal in my state of CA). They approved some assistance in the form of $5/hour for a certain number of hours of inhome care. Of course inhome caregivers charge $10 to $18 and hour. So I was able to sign myself up as the caregiver to recive this $5/hour...and then could use that to go towards the actual cost . That gave me some very needed time off.

As far as skilled nursing care in a Nursing Home...it is a good ideas to plan ahead. Research and get on waiting lists. Facilities with secure Alzheimers units can have long waiting lists and sometimes only a few Medicaid spots available.

Skilled nursing care can be approved by Medicaid when your mom is "a danger to herself or others". I know that is a difficult statement to make but that is how Alz becomes seen as a medical condition in Medicaid's terminology. I needed to get a letter stating that from my father's doctor. Some doctors (particularly in HMO's) can be hesitant to provide that either because they are unaware of the extent of the condition or because of policies about avoiding any liability for the cost...so you may have to be insistent when that is statement is needed.

Again you would apply for Medicaid through your county's Social Services department. Based on your mother's income and assets they will cover the NH on a "share of cost" basis. In other words, what your mother cannot afford.

Nursing homes want someone to sign a a guarantor. I don't know if anyone else has been able to avoid that. I did it for my Dad and covered his initial month or so until Medicaid was officially approved. Kind of scary to sign as a guarantor on $4000 to $5000 a month but it worked out okay. Of course you would want to get things started with Social Services so you knew they would approve it before hand.

If you start researching facilities, there are a number of sites on the web. Search for eldercare. I found that when I entered Alzheimers or Secure Alzheimers Units as a search criteria I came up with almost nothing. But by getting some initial phone numbers on the web I was able to call and get further leads.

Hope this helps a little and makes the future a bit less overwhelming.

Suzanne

Hi Sweety, take a deep breath, you will get through this.....if I did, anyone can!

My best resource for help turned out to be a local "Elders at Risk" program in the town where my Mom lived. Does your Town or County have any organizations specific to Elders? They assigned a Social Worker to my case and she held my hand and supplied me with Avenues to check out. They also have an Ombudsman in Massachusetts who oversees Nursing Homes/ALFS and is a good resource. I'm not familiar with NC but would imagine that each state has their own 'services'. Many advised me to the Alzheimer's Association but in Massachusetts, all I ever got was voice mail and never did connect with a human voice, so I gave up on them, Other states have better programs I hear....Although my Mom ended up being placed in Massachusetts, (where she is from) I also researched in New Hampshire where I am from. As I live in a rural area, the most expeditious way I found help in this state was to call my State Representative and put her on my case, She was great and hooked me up with all the State Resources I needed to know about. It was one phone call that resulted in a mammoth amount of help. Hope one of these thoughts works for you.

I had another question, when you say your LO "acts out" when you go out, is this her 'own' personality acting out or the disease? In the case of my Mom, she reverted to some very aggressive nasty behaviors that were always underlying in her, but kept in check prior to the disease (at least in Public!) I FINALLY (should have done it sooner!) had a full Psychiatric work up done and they put her on Zyprexa 2.5 mg a day which has made all the difference in the world. She does not appear 'drugged' but is kept level and cooperative by this miracle....Both of us are able to be happier now.

Hope this helps and hang in there, this too in time shall pass.....Susan

You all are great. I wish I had found this group a long time ago.
Thanks Susan and Suzanne for your input.

Susan, her "acting out" is not in her nature. She was one of the sweetest people I ever knew. Someone could cuss her out and she would never have a bad word to say! Unfortunatly this disease has taken most of that away. She is not violent often, but has smack a few people here and there. The worst part is bath time. If I am not careful I will get a good "wholop" during bath time. Mostly she is just ill all the time. (ill as in angry) I have an apopointment for her to see her Dr to get his opinion on something to ease her temper. I think I need to switch Dr.s though. I have to wait atleast a week for an appointment and he is in and out so fast I cant remember all I want to talk to him about. I am going to make sure I talk to him about declaring her incompetant (sp?). What Suzanne was talking about: Danger to herself or others. There is no doubt that she is. She has taken worse in the last year. She still paces back and forth through the house, searching for what I dont know, but she only does this for awhile. She falls asleep sitting up, and is sleeping longer and longer. She has no control over her bowels. Her appeitite is going and she is starting to lose weight. 90% of the time she makes no sense. She cant form words much anymore. (although she surprises me sometimes)
I know the time is here for me to do something. I cant handle it all on my own. I know this, yet I sit and do nothing about looking for help. I dont know why. Maybe I dont want to give up on her, maybe I dread seeing her in a NH. I just sit here and let the days go by, doing nothing about this.
But I still think I could handle this responsibility better if I just had a break.

Hi Sweety, First and foremost, I would INSIST with the doctor that a full Psychiatric workup be ordered NOW. The sooner you get her behaviors in line, the better. I waited too long because I simply didn't know better....In my case, I ended up committing Mom to a Psych ward, 911 call, which was the hardest and the smartest thing I did. (I had an appointment for her the following week, but we just couldn't wait that long...) MY POA gave me the right to have her committed even if she disagreed. The Zyprexa that Mom's on has evened her personality out and she is pleasant and happy most of the time. WHAT A DIFFERENCE! (it took about a week for them to figure out the dose and we still have follow ups to make sure it's on target.

As for the problem of 'doing nothing', I can also relate to that, Don't beat yourself up, Sweety, you are doing something, you are writing to the forum, you are thinking about what's next, all things in time. Trust that the Universe will prompt you to act when it is right for you. What I did to help me get passed what I refer to as my Perfection Paralysis (I was so scared that I wouldn't do the right thing, that I did nothing) was two things. First, I wrote one task each on an index card that I needed to address and put them in a box (in no particular order). Then, I promised myself each day that I would do just one of them. (if I was having a strong day, I did more, but on my weaker days, I pulled enough strength for just one and told myself that was good enough for now....I didn't focus as much on the results of that phonecall or visit as much as I patted myself on the back for having done it.) The other thing I did was to TRUST TRUST TRUST in God or the Universe or Mother Nature or whatever you wanted to call it to get me through this. And they did! You don't have to fix this all in one day, Sweety, you just need to start the journey. "A journey of a thousand miles starts with a single step"....You have ALREADY made many steps and several leaps, Appplaud yourself. Others would have run from it....

Another thing I learned, when Mom was in the Psych Ward, they told me that they could only keep her 7 days and that I would have to take her back with me. However, I learned from an Attorney, that if I refused and all other relatives refused, they would HAVE TO assist me in finding a suitable place for her to be cared for as they would be liable should they release her to herself and something were to happen. This felt awful, to refuse to take Mom out, but I had it in my 'back pocket' if I needed it. The Hospital has Social Workers who advocate for you and for her. Call the doctors office today and ask for a prescription to be called in for the aggressive behavior and start there. I did that and while initially they put her on Haldol (it wasn't the right one, but it worked for a few days....) it was a start. Try for Zyprexa ...perhaps, but ultimately, the Psychiatrist will know.

If you had told me awhile ago, that I would be sitting here calmly drinking a cup of coffee, knowing that Mom is safe and cared for, I never would have believed it. But it has happened and I survived. Believe that this will work out, trust, trust, trust. Much love and cyber hugs, Keep posting, we all care, Susan

Sweetyhide,

I noticed your comment on medicare, and why doesn't medicare pay for Alzh. care program.

I couldn't agree more. Medicare in-home care programs could evaluate individual need and pay for necessary services. This not only would significantly reduce the stress of family caregivers (and some of us are the only one in the family providing care), but would SAVE the governments money by reducing the number of people who are in nursing homes. Although NH or residential care facilities are good options for many individuals especially those who do not have a family member(s) willing or able to provide care at home, if we had more affordable or free home care programs then more people would be able to stay at home longer.

Medicare as you know at present only pays for temporary care and only if the person requires nursing care. In other words, the home health aid has temporary visits and under the supervision of a visiting nurse. My friend who is 82 is constantly having inconsistency in her health care because as soon as she gets a little better, then she looses her medicare-paid home care. Then she ends back in the hospital and then it starts all over again.

Recently we found out that some HMOs pay for respite hours, but only 80 or so hours a year for caregiver. Respite hours are available at caregiver resource centers (do you have one in your area) but there is a waiting list. There are also respite programs available to veterans.

My daughter and I are now looking into long-term care insurance for me (I'm only 52 but she would like to plan ahead since she sees what I am going through caring for my husband alone). Her plan through her work (John Hancock) would cost $35 a month and pays $100 day. This may be fine for in-home care assistance for 5-6 hrs a day but obviously is insufficient for NH care.

Local universities and hospitals and county government has booklets listing community resources for seniors that I have found helpful as a starting point.

Good luck, We're all in the same boat. Maybe we can help each other with ideas. My goal and desire is to be able to care for my sweetheart at home as long as I can and give him a good quality of life.


Cher

quote:

---

Originally posted by Sweetyhide:
She is not violent often, but has smack a few people here and there. The worst part is bath time. If I am not careful I will get a good "wholop" during bath time. Mostly she is just ill all the time. (ill as in angry) I have an apopointment for her to see her Dr to get his opinion on something to ease her temper. I think I need to switch Dr.s though. I have to wait atleast a week for an appointment and he is in and out so fast I cant remember all I want to talk to him about. I am going to make sure I talk to him about declaring her incompetant (sp?).

---

OK let me break my answers down a bit.

• Violent behaviors - Thes only get worse as time goes on if they are not treated/adressed

• Bathing - This is something that makes most AD LOs very anxious leading to violent behavior. They do not understand all the activity going on around them, there is a great deal of stimulis, like water pouring on them, bright lights, noises and slippery surfaces, and frankly they do not understand what your intents are stripping them of their clothing. This is a frightening activity and when we get frusterated it feels more like an undecent non consentual activity.

• List for Dr. - Make a list of the question you want to ask the Dr. Give it to the nurse to give to the Dr. before the appointment. this will give the Dr. a chance to review uyour questions. Be sure to take a copy of the list into the exam room with you.

• Declaring incompetent - This is a legal step and just having the Dr. say she is is not enough. You may want to contact the Alz. Assoc. and they can give you a better guidline as to how this can be done.

When Alzheimers progresses to the level when 911 calls, "incompetent" declarations, or "danger to themselves or others" are part of the discussion it seems to me that the situation is pretty urgent. I hope Sweetie's situation is not there yet.

I agree with Edyth that ruling incompetent is not something that a doctor can do. This is a legal action and is therefore more complicated and takes time. A letter for a doctor that states "a danger to themselves and others" is not a legal ruling but can get the care process and Medicaid approval going more quickly.

When my father got to this stage, I had to find a solution to get him into care as soon as possible. He was not at that point capable of understanding his need for care. Getting him ruled incompetent would have been a complicated process that took time and would have brought in resistance from a sibling who though not willing to participate in caregiving would have opposed it. (I will spare all the details.) I did have Durable Power of Attorney and that was critical.

The Social Services and Adult Protective Services people I talked with told me I might have to 5140 my Dad to get him into care. (He had pretty well scared the Social worker who interviewed him.) Sadly I did have to do that to get him stablizied (he had to be on medication to stabalize his behavior so that any NH would consider admitting him...they refused to consider him otherwise). Taking Dad in on a 5140 was a real heartbreaker but it was the only way to get him into care. I had already gotten a letter from his doctor stating that he was a danger to himself and others (this was based on numerous incidents with neighbors). That allowed us to apply for Medicaid NH coverage.

I my Dad's case, the HMO was happy to remain out of the picture as far as assistance in getting him care. They only way I got them to assist was through desparation. My Dad had hallucinated and torn the bathroom mirror/cabinet and part of the wall out. Once he was 5140'd, the hospital and doctors could not ingnore his condition. Although they did call me after the 72 hour period was up to say that they could not hold him if he wandered out of the hospital. That took a call to the media. Then the HMO started helping with placement search and agreed to keep him in secure hospital care until he was placed.

Writing about this again I wonder how I still have some marbles left. I case my point is that there are routes you have to take that get the care fast! Sometimes it takes actions, one doesn't want to take, sometimes it takes persuassion, insistence and even a call for help to a local news station to get there.

There was no money to go anyway than through Medicaid for NH. It took a lot to get that help. But it can be done.

Suzanne