I am worn out caring for my mother with Alzheimer's and we cannot afford to put her in a home. Where do I turn next?

tiredout, start by asking the adult daycare staff to point you in the right direction. Some of these facilities have good working relationships at nursing homes and can hook you up. Find a NH that will help you apply for VA, SSI, Medicaid or whatever it takes to get the job done. Get the MD to certify their incompetence and need for skilled nursing care.

Hugs as im in same boat! Captains right! i think my mum will have to burn the house down before we can get her help or she falls or worse? My mum wants to die in this house and she just might. I am very down today as im just wondering how much more i can take.
Today shes moaning again about the carer "she does nothing". no matter whats done for her she moans and im sick of it!
Like captain says if she wants to stay in her home what can we do?
I too still have to find out whats next? But without POA we have no power of thier care.
You are lucky that she even goes to daycare ive applied for my mum and am dreading the war ahead as she wont go "thats for old people". shes right shes only 76 but her minds going?
This is so hard i dont want mum in a home but I cant do this anymore she is not safe here on her own and her doc says we cant force her into a home?
I am just waiting for something to happen like a fall and pray she will realise she cant be alone?
Governments should be working harder to keep people in thier own homes.

Pro I am glad you and your husband were able to repair your relationship -caregiving takes a toll and setting boundaries is very important-the person getting the care can become very selfish and think only of themselves-that was true with my husband-I had to learn not to always put him first and to realize that I did not deserve to be treated badly and was able to take steps to change things before he passed away-I am very lucky now to have a good man in my life now.

"If she said: "I want to stay ALONE with NO CARE and smoke crack , the law would abide by what she wants first...."

this is exactly what ive read online about elder affairs. the self determination of the elder will be upheld by law. i find that comforting. i know carers need more respect and help in our society but when im old and half witted i , especially then, dont need anyone telling me whats best for me. becoming a burden on someone else is not good but being treated like a child would not go over well . i want to live alone and smoke crack, figuratively..

Hi Gina. My heart is breaking for you and your situation. About seven years before she passed away, my mother fell at our house and broke her hip. That moment was a turning point for everything and everyone that was a part of my life. She was not intentionally demanding, but she had no concept about the value of money. She couldn't understand that it took all of her income (after her assets were gone), plus my supplementing her, to afford to keep her in the ALF I wanted for her. It was five minutes from our home and was a lovely place, and I didn't mind supplementing her income. When I finally realized she had no concept of money, I made sure she had some money to go with her friends when there was a shopping trip or activity. I even gave her money to go spend at the casinos, because she seemed to enjoy it so much! It made me happy to see her comfortable and, if not happy, at least content. I was retired and working a second job. What used to be my "mad money" soon became "Mom's money." I made a point to see her every day. I made friends with the owners of the ALF and the people who lived there. Half of the people there thought I worked there, and the other half thought I was someone who was being paid to care for my mother. :) When seeing her once a day was not enough, though, and she started calling "needing" something else after I got home, it was pulling me in all directions. I knew it upset my husband for her to pull my strings,but I was also devoted to my mother. I got to the point that I had to see a counselor, because the pressure was about to destroy me. As someone else here said about their home being neglected, ours was the same way. My husband was doing the grocery shopping and cooking, and I barely kept up with the laundry. The rest just kept piling up for all of those years. My husband and I rarely had time together; and, when we did, I was so tired I would fall asleep during a conversation! If we took a week to go out of town, I felt that I had to call and check on her every day. Well, she passed away three years ago. I am happy that I was able to make her final years comfortable and content, and I don't regret a moment I spent with her. In the meantime, however, my husband's anger was building by the moment. He let it all out two weeks after her passing. It totally shocked me and hurt me to the core because of the fragile state of mind and body I was in at the time. We had a very rocky year after that, and I was an emotional wreck. My husband has become someone I didn't remember ever knowing. My best friends were encouraging me to leave or ask him to leave. I was truly at the point of giving up on our 20+ years of marriage. We didn't have children together, but he has grown children from a previous marriage. I called a couple of them and told them what was coming if he didn't do some changing. I think there was some discussion among them and with him.. They had always said I was the best thing that had ever happened to him, so they probably put things in perspective for him. We began to put our life and relationship back together. I am pleased to tell you that we have had two years of happiness, and I feel sure that our commitment to each other has returned. We almost lost each other, though! I didn't realize how much I had neglected him and our home, including Mom's dog that was staying with us, It has been three years, and our house is still in the process of recovering from all of the neglect experienced during the time my mother was living. Now, I can enjoy my husband again, and I can enjoy coming home to him and the precious little dog we inherited. My advice is the same as you have heard from others. Do not let anything keep you from taking care of YOU! What I didn't realize was that I had the power to make decisions; I just wasn't exercising them. Hire a lawyer with her money, get his advice and arrange all of the legal things you will need, and get on with living. Keep your mother in your routine and do as much as you can and are willing to do to make her comfortable. Do not sacrifice your health and marriage in the meantime, though! One day she will be gone, and it will be important to have your health and relationships as your support system. That is not being selfish. It is being sensible. Do not feel guilty, once you have her placed in a NH, if you need time to yourself and can't make her the focus of your life. There will be people there to do all of the things that you have been doing. You have to take care of yourself in order to enjoy life and to be there for the rest of the people in your life. The beauty of it will be that you will enjoy the time you spend with your mother. You will feel better and will be in control of your life again. That should make her happier, too. After I started exercising some "tough love" and setting limits when my mother tried to pull my strings, we were able to be happy together and enjoy the time she had left. I wish you all the best. I still miss my mother very much, but I count my blessings that my time, money, and energy I spent on her did not cause me to lose myself, my former life, and the other people I love in the meantime. God bless you. I will keep you in my prayers and hope to hear that you have taken some of the advice from me and from others and that you and your mother are happier and enjoying each other.
ProfeChari

We are in the process now of getting mother on Medicaid. We did see a lawyer who deals with elder care because the laws are absolutely confusing.

With the help of your family doctor, put your mother in the hospital for three days and the doctor can order her to have rehab for 20 days in a nursing home and Medicare pays for it. This will give you a much needed break. And tell your mother the doctor ordered her rehab so she will stay there for the 20 days.

All of her money, except $2,000.00 needs to be used out of her account/investments, etc. on remodeling her house, helping with the grandkids' college, even getting a car to use to go back and forth to the nursing home, etc. So, someone needs to have Power of Attorney (POA). When her money is done to $2,000 then apply for Medicaid with the help of the lawyer and/or the nursing home she will go into. There are several ways to get on Medicaid. The lawyer will know all the state and federal rules.

It takes awhile to get this done, so go ahead and bite the bullet and get it started.

Our lawyer charged $200.00 for our visit and he sent letters about the visit to all the children, so everyone would know what is going on. Mother has some money, so we are paying the nursing home out of her money for now. This was the least complicated of all. We will see the lawyer on a "must see" basis...not until her money is nearly to $2,000.00. So that is where we are at the moment.
Her nursing home is $100.00 a day and we pay once a month. If she goes to the nursing home beauty shop, they tack that onto the bill.

We switched to a pharmacy that delivers her medicine to the nursing home, so that saves me having to do all that. The pharmacy sends me the bill once a month and that comes out of mother's money, too.

We also pay her supplement and Humana for her drugs out of her Social Security check.

My husband and I live in mother's house and have for 4 years, so the house is "safe" from being taken because "adult children live in it." So, that was a blessing.

Anyway, God bless you in dealing with all this. My husband and I got to where we absolutely did not have a life and mother was so mean to us...she has dementia really bad. Now, she is nice to me when I go see her every other day at lunch time. And, she is mean to the nurses a lot. Our life was totally miserable living with her. If she had not turned out mean, it would have been different I'm sure. But, that's not what we got.

Bless your heart. God bless you. God bless caregivers.

i too am going through this. I am worn out completely and get no help. I feel like I will scream and want to run away but know i cant. the doctors say matter of time but it seems he is just some days getting stronger. cant be both ways which is it? he sleeps very little very little can be awake 36 hours at a time. walks and walks and walks running into everything and falling if i am not right behind him. he wont let anyone but me change him or bathe him. I and my back and my mind are all about shot. but I continue to go on. I know if he went to a nursing home they would have to sedate him as he would not just sit he would get up and try to get out. God Bless Us All

I would suggest calling your local A Place For Mom advisor for free advice. Many of them are certified senior advisors and they know the inside scoop on local facilities and home care companies. I have found the one in Nashville, TN very helpful.

When my mom moved in with us, I went to an elder attorney...he charged me $350 to tell me how to spend down. Since my mom didn't have that much, it was not complicated. You are allowed to have certain things that do not count towards assets. One of the best things you can do is make sure she has her funeral arrangements done and paid for. That could be $10,000 these days. That is one way to spend-down. If you are not Power of Atty now, you have to try to become that soon so you can accomplish these things. Depending on which state you are in, there is a limit on what she can have in her bank account. Ours in Florida is $2,000. When her assets do not exceed the $2,000, you can be eligible for Medicaid. Hopefully she has Medicare Part A, B and D because most nursing homes require that. There is a lot to be learned, but step by step, you can do it! Seek advise from an attorney or research the internet.

You can go to MEDICARE/MEDICAID....meanwhile, I will be building a ledge that I can hang out on....I hope everyone is seeing what they will be getting as they get to this LOVELY stage of life, It sure is not pretty is it?

I jumped though every hoop....then since my GREEDY sister flew up from Florida to take mom to the bank, I had to go for Conservatorship so only one person banks. Now that she is "PROBATED" and my sister contested this, I still have to go through this STINKING JUDGE for every decision even if it is a safety issue. What is the point of being in charge of your own mother if only to have some stranger who works for the exploitive system to under mind every decision I make? The hearings are $150.00 plus $18.00 for hearing notices. It takes up to 6 weeks to get a hearing, meanwhile all hell is breaking loose and I my BP is through the roof from STRESS. Then the attorneys get $250.00-$300.00/hour, so the WINNERS ARE.....THE SYSTEM...WHAT DO WE HAVE FOR YOU LADIES AND GENTS? A huge BILL and your mom gets a kick in her oxygen machine..ding-ding-ding!!! Clearly the system does not give a rats ass about the care givers. They use us to cart them to appointments burning our gas and time and energy while they sit on their throne's making us bow down to "YOUR HONOR". YOUR HONOR will do what ever my dementiated mom wants. If she said: "I want to stay ALONE with NO CARE and smoke crack , the law would abide by what she wants first....I am living the definition of insanity.

I believe that is the issue, she does have a little $ and dad wants it. It really ticks me off as I have said over and over to he and his son. that is her $ that she worked her whole for to be taken care of properly. Its all about the $, so they can all get it through their inheritance. I am doing my best to get her more nurse care. I cannot even believe they are that concerned about the $. I am so glad my family was always poor!!!! ")

I too have a mother who suffers from Alz. Last year I consulted an Elder Care Lawyer who advised me on how to make my mother medicade eligible. My mother's monthly income too exceeds medicade eligibility, but is not enough to afford a decent nursing home. And in addition, my mother owns property. I have kept the property because I thought that I would needed it as an asset in order to inact a Miller's Trust in the event I needed I couldn't care for my mother at home, and needed to place her in a nursing home. I was wrong. I was advised by the lawyer of my options, and none of them involve losing the house. For me, the most feasible option was to "spend" down her assets. This included spending down her life insurance cash value, wherein I simply opted to pre-purchase all of her funeral arrangements. I also needed to spend down her other assets (ie. checking and savings accts). Regarding the house, I was given serval options, but I choose simply to have the title transferred into my name at the time she passes away. I echo the responses of the other's comments, I would look into spending down your mother's assets in order to make her medicade eligible, and in the meantime, look for a nice convenient nursing home that accepts medicade. My prayers are with you.....

I told my daughter, as soon as you see me like that, put me in a NH because I never want to put you all through this. My 2 sons, 19-17 are great w/MIL, but my daughter is getting resentful due to being up most of the night because of screaming and blabbing nonsense all night, her room is almost next to theirs. The stench of urine and feces is enough to knock anyone out. I have been trying to make myself less available to make my husband do the hands on of cleaning her up when the nurse is not there, since he thinks it is a waste of $. I am hoping after he gets a little more hands on he will understand. I think we are finally getting a nurse in at night from 12-6 AM. That will be a blessing in itsself. God Bless!

gina - we have a 9th grader and it is interesting on how all this has impacted him. Much of what DH & I have done regarding the mom's has been about what is the healthiest for our son, our family.

My MIL was a selfish, demanding, financially self-destructive piece of work. After a number of incidents (including being held up at gunpoint), we got her into a good NH that was old, old so it really was more an IL (she was in her own efficiency with a shared full big bath), that was blocks from her old place. Food was great, there was an outgoing afternoon sherry group, staff was multigenerational and caring. But going to see her was always a nasty hateful visit. When he was in 1st grade, he said Dad I don't want to go see Gramma Jean until she speaks nice to you. When she died in May, all he said was something like glad that's over.

My point in this is that by making ourselves bone-dead tired in taking care of in-laws or parents and fighting with family over care & $$ for those who have the ability to pay for care or putting up with manipulative parents leaves an impression on our kids that is not healthy and they are going to run for the hills or South America when we hit our 80's.

I really appreciate this link as it does allow me to vent here instead of burning up my fellow worker's ears and friends. It is consuming my life, I am so burnt out and my husband just thinks that there should be no reason to complain and doesn't think it is hard at all. Now mind you, he is never around her maybe more than an hour a day and he makes sure he is too busy to help. I have to put my foot down and make him help. It is his step-mom and his dad's 3rd wife, so he really has no connection to her. It is quite sad in my eyes and do all I can. And pray, alot!

the saddest part of all of this is that it is all about the $. Dad and his son, my husband think we can keep her home. It is his step mom and they think that she will not get good care at a home. I just told dad this AM that all his fears about the nursing home happen when he is in charge of mom. We have an AM nurse, but MIL needs more care than that and it is getting the both of them to surrender to the fact that me and our teenagers cannot do it any longer.

gina & tired - you are just overwhelmed.

Is there any way you can do a respite care for a week or a few days?
Many of the home-health agencies do this at your home and also the ALF at their place. One big advantage is while the respite team is taking care of them, they ALSO are evaluating them as to their needs and placement. All this coming from an experienced outsider(s). They will do a report for you - which can be invaluable for family who may not see the reality of the situation whether it's mom & dad or aunt tina or that worthless brother.

This is all so hard and so many of us have such difficulty in taking the bull by the horns and becoming the parent to our "reversing adult children" aka elderly parents. But just as we go and do and insist and make rules for our children we have to do that for our parents when they cannot see the reality of their situation.

It is only by the grace of God, that we all are making it through these days.

Please look after yourselves-FIRST-. Having looked after my FIL for 3 years I was diagnosed with depression; I supposedly attempted to kill myself. I am now working on the guilt I feel since he left. He is now living with his daughter. You need you more than anyone else.

Thanks for all the advice and all the "venting" i feel like all my conversations with my friends and family revlove around my "old kids" now. It is getting so stressful between my husband and I. Our home, just 2 years old is now nothing but the smell of urine and feces. It is heart breaking! We will continue to do the best we can. God Bless to all and everyone Hang on! LOL!

It is so much harder than raising young children, you can passify them and make them happy and they can tell you what they want. With ALZ she cannot communicat at all with us, much less the fact mom doesn't even know who we are now. And they do not want to pay for extra because they have us! We have help in the AM but according to dad, why pay for help when everyone is home then??

Mother who has Alzheimers, and Liver/Adrenal Gland Cancer lives with us. She owns nothing, and has no money besides a very small Social Security check. Before we found out that she had cancer, her Doctor wrote an order for Hospice. They are really wonderful. I have also contacted the Council on Aging in our community as well as Elders Affairs. just a few ideas for you. Hope things go better for you. It is a long hard haul. But I would not change anything for he world. Hugs to you

Please take the advice of MindingOurElders very seriously. Limit your search of facilities to those that will accept Medicaid. Be candid with the admissions people. Mom can be private pay for x months, and then she will need to be on Medicaid. Start the application process. This is all hard work, but it should be very worthwhile.

And also I don't really see much solution to this issue on a personal /family level. I summarized the solution in one word: money. If old parents have this, things can get a bit better because money can buy time from other carers, money can buy luxuries and amenities so the old don't have to burden us caregivers. Then we can have more time to pursue what we wanna do. But in reality this isn't so. And that's when we all lament the fact & reality and wish this isn't happening to us. I really have no solution. Ahh except more money to pay for mom's care or death which is the great equalizer, the great solution-provider. The great "omega" in the saga of caregiver's stories around the world. God bless everyone! Me too I'm battling this battle and I just pray and take deep breaths. Mom isn't getting any better. There are days it's just too much. I rant here, it helps. Thanks for listening.

lijoma62 I agree with u. It's also been on my dialogue that raising kids was a cake-walk compared to "raising" old parents until they don't get strong, but actually go down the grave. Kids have a predictable years of growth & progress that follows. This caregiving duty is years down down down the drain. I got a student same age as mine, we're both 40 yrs old. He too was so worried about his own future because we're both breadwinners and we only have 1 child each. He read this book called "The Shock of Gray" about the world having too many old people in the next few decades. I'm not promoting the book, I'm simply sharing insights thru these links. I cant help but agree it starts with personal negative impact, until the whole problem of ageing societies impact negatively on a national or global scale.

Gina! My sister and I are going through the same thing. It must be a generational thing along with your father-in-law trying to hold onto control of things. They are not going to get any younger or better so you and your husband have to start making all the decisions no matter how difficult it is.
It will seem like a no win situation...everyone involved will be unhappy, stressed, angry, frustrated and stubborn. This is very unfortunate for all to have to deal with.....all of the entire aging process. This has been the most diftficult task in our lives...raising kids was a cake-walk compaired to this! Be strong, yet loving and take care of yourselves!

@ Ginamahoney: you need to get DPOA or Guradianship ASAP, so you'll be legally able to make these hard decisions. Your dad may be angry, but there can actually be dangerous situations where it's very needful to intervene. Maybe your folk's doctor, pastor, respected friend, or eldercare attorney can help...and please DON'T feel guilty asking for help. ♥

my inlaws have the $ to be put in a home or get help at home but they will not do this. Dad will not spend the $ and i have just now been able to get a comfort keeper in to help when i am at work. We still need someone to help at night but cannot get dad to understand this. He is 86 and thinks we can just do it. Mom is 89 and is full blow alz. She needs 24/7 care and it is so hard now to take care of her now that she doesn't understand anything.

The first thing would be to call your your social service office and get a medicaide form-you might want to use her money to pay for an elder lawyer's advice it will be worth it in the long run because the medicaide form is very complicated because their impression is that everyone is trying to get out of paying their fair share which of course is not true but in the past people have done that. Start looking for nursing homes-my best advice would be to go and see the closes ones to you-see about 3or 4 so you can get an idea of how they are and while visiting them talk to the social worker at each one they have the experience to get through the red tape. You might want to get a notebook to write down who you talk to and what was said and the date because you will be talking to so many people and you should get their names also. I tried to do the paperwork myself and it was necessary for an elder lawyer and a social worker to help me-what Carol above said is it in a nutshell. A lawyer told me the 60 % of caregivers die before the ones they are caring for do because of the stress of caregiving and you know when you reach that point which it sounds like you have - do not feel quilty because you will still be a part of the team and it does no one any good to kill yourself-actually if she does not have many assests it is a lot easier to get her placed-you are not responsible for the expense of her care -they use her assests to deturmine when she qualifies for medicaide and the social worker at the nursing home you choose will help you because the faster it is done the sooner they get paid-I learned a lot from the experience-at first is seems overwhelming but take it one step at a time and let us know how you are doing because the people here on AC want to be of help and your experiences will help others also. Carol has been a caregiver to 7 people I believe and I have been on here over 3 years and she gives very good advice.