I am new here and have been reading a lot and see/read so many stories it seems sad and unreal. My story is quite long, so forgive me and thanks for reading in advance :)
I am the baby of 5 and the closest to my mom, who will be 95 the end of May. She was diagnosed with Alzheimer's and Vascular Dementia almost 2 years ago and was having issues starting out about 7 years ago. I think that is when it started based on things she was doing, saying, etc.
My other siblings (2 Bros, 2 Sisters) never really had a good relationship with my mom. They lived right under her nose in the same state and did nothing for her all these years. When they did, they would kick her out and tell her to leave. She has always had a nasty demeanor/attitude since her and my dad divorced in the late 60's, and she never remarried, dated, etc. I moved away, got married, etc. Been gone ever since. Fast forward to 2008. I convinced her to move where I lived so she wouldn't be alone anymore. She was in good health at that time but no longer drove. She lived on her own in a senior place for the last 15-16 years.
All my siblings live in different states and 1 passed away (Bro) in the late 90's.
Well, 6 years ago, 1 of my siblings (Sis) and her adult kids (2) decided to up and move an hour from where we live but in the next state over from us. We had a relationship the 1st year after they moved, then there was an issue and it ended. They would take my mom up to their home for a few days, but once she got mouthy, they would bring her back then not call for months, etc. This went on for a year and they have not seen her since pre-covid. No calls for birthdays, holidays, mothers day, etc. Another sibling (Sis) who lives in TX hasn't seen my mom in years, but used to write a few letters and send money/gift cards on occasion. Then there's bro who lives in CO (the toxic one). None of these siblings have relationships with each other due to their own issues with each other. Very sad.
So for the last 8 years, my mom started doing things that were out of the norm like complaining that her next door neighbor was playing loud music, tv all night, etc. The lady upstairs was banging on the floor when my mom was on the phone, strange people got in her apt and were standing in front of her when she was asleep in her chair, and so much more that I began questioning things. And to top it off, she was lying to my siblings when they did call about me and my hubby. They believed every word and thought it was the gospel. My mom was saying we charged her to take her to the store, the dr, for gas, that we were stealing from her etc. All lies! I am disabled myself and have a heart condition, so I cut ties with the one sibling (bro) because he was so toxic and would leave nasty messages on my mom's phone for me and she'd get them. He hadn't seen mom in over 13 yrs. I would go pick my mom up and bring her to my home and she'd stay for 1-2 weeks at a time, all holidays, etc. I'm the one that took her to Dr. appts, store when needed, and she was walking 1 mile a day up to the family dollar daily with her walker on wheels. Then she began to stop cooking, was eating less and less and dropped 40 pounds in 3 months. She wouldn't take her meds and fell numerous times. She also has severe Osteo and scoliosis, so I began to worry and got the doctor involved. They began testing her mind on paper for awhile and failed them each visit. Then she was actually tested and diagnosed. Doctor said due to her condition, she can no longer live alone and would have to move in with me (her only option). So I decided to send a text to my 1 Sis an hour away and tell her what was going on with mom because I thought she needed to know. Bad decision. Go to 2nd post where I continue!
So I got a text back from Sis telling me that because she was 1 of the oldest that she would take charge and she demanded I turn over life ins and anything else financial. She has not had a relationship with my mom in more than 20 years and when she did it was nothing. I have been my moms Beneficiary for 25 + years and her POA for the last 12 years. My sis in Tx has a Life policy on my mom but no relationship in more than 30 yrs. I also found out that since the 1 Sis and hr away moved they had been trying to get my mom to take my name off everything and she refused.
So in April of 2020 I began going to my moms apt and throwing stuff out, selling her furniture, donating, packing and then moving what was kept into storage all by myself with no help from anyone and listening to my mom have attitude the entire time because she didn't want to part her stuff like boxes of greeting cards, address labels etc. all the while she was already living with us until her lease ended in Aug of 2020. As of April she will be with hubby and I a full year and since Sept of 2021 she has gone down hill. All her bills had went unpaid and she was being charged $40 late fees each month and she even took out a loan which is crazy. All caught up now thanks to me! She had her own phone in her room so she could get calls if anyone wanted to call like her 2 sisters that live in another state 8 hrs away. Well My Bro had called her phone and he asked to speak to me and I was hesitant but had been praying he would realize something was wrong and what he was being told was lies, so I preceded to tell him the hard facts and sad truth and he balled his eyes out on the phone apologized and ever since he and I are tight once again and we face time everyday and he came to see mom in Sept and now he sees what I am dealing with and he says he couldn't do what I am doing (I am 54). My mom requested that her phone be taken out cause no one ever called and it hurt her so now only her sisters and a few of her friends have our home number because of the lack of care and relationship she has with my other siblings but they never called much anyway and never did anything with/or for her in years.
SO since sept mom has fallen several times, can no longer walk with her cane and uses a metal walker, she wears depends now, and now she thinks I am my sis that lives an hour away and it hurts so bad and angers me because I am doing it alone, im the sole caregiver but hubby helps when he's not at work. Mom hallucinates and has delusions everyday, tells me there are people in the house carrying a stack of papers that need to do business with her, asks me how can she get into a place like where we live (our home) and one day said the dog talked to her (wow)Mom has late stage but is in denial, refuses to believe it says we want her money etc and stealing from her.
It is very hard to take her out anyplace because she gets nasty and mouthy in public and people give me dirty looks if I say anything to her, I bath her, see that she's fed, takes her meds, sees the dr's etc and I am so angry and hurt by all that has happened and is going on. She has medicare and does not qualify for medicaid because she does not meet the ADL's and because she has life ins so I have no idea about getting her in a nursing or memory care when needed and she tells me she refuses to go because she's not a crazy person and she doesn't want to be strapped in a chair. She has conversations in bed and during the day with her imaginary friends and the things that come out of her mouth is unreal, nasty things about me and hubby etc. She is on Seroquil to help tone it down at bedtime but doesn't always help. Some nights she sleeps without talking and other nights she gets up and dressed and forgets where she is or is angry and says she wants to go home. I hate these disease's and the stress it causes, I am in a support group twice a month to get help for myself and l
Your mothers weight loss and adl decline and falls are beyond concerning. No one person can handle that level of acuity. A hosp admission, or even a social admit, would at least give you more clarity into what you have to do to modify your house and provide her care. Go to the rehab or snf they send her to, and shadow their jobs for job training. If you will be responsible for taking diapers off an uncooperative person, you should see how they do that. When they feed her, check out how they do it. If you decide you can’t do it, it’s completely fine and not a failure to leave the heavy physical stuff to people who are trained and paid to do it. You can still visit, and perhaps that’d be best. Good luck
Ive heard bad storied about them going to an ER and not getting the proper care and being a fall risk that they can't handle a patient in her condition.
And one morning last week she opened the front door while I was asleep and I could hear her in the living room talking loud to her imaginary friends and front door open, 1st time she's ever done that. I have cameras all over the house. So now thats a worry.
If your mom has no assets, but doesn't qualify for Medicaid, AND no one is her PoA or legal guardian AND you as her caregiver are descending into burnout...I would seriously consider asking the county to acquire guardianship of her. This may happen anyway if your mom's dementia is so advanced that she can no longer create a PoA and legal guardianship by a family member through the courts would be extremely expensive.
I honestly don't know what other alternatives you have besides having the county become her guardian. At least she'd go into a facility and be protected and cared for. There are some very good facilities and the guardian would consider you input on the matter. Just start by calling the county. If you don't take care of yourself, who will?
If you read both of my long posts it states that I am POA and have been for 10 years. She does not have any assets other than bank acct which is small and 2- life insurance that draws cash value this is why she doesn't qualify for medicaid financially and because she does not meet the ADL's she does not qualify medically.
Thanks
When she 1st moved in with me I reached out to medicaid to start the process then learned about there rules to qualify. She is going to be cremated with no funeral service and ashes split between my Bro and me, (Her wishes) as there is no one to really attend a funeral or service. She only makes $1,400 a month so that is ok but she refuses to spend down her life ins but I would need to find out if I can do it since I am POA without her agreeing? She still has some of her thinking and at times rational but she's declining daily and with her nasty demeaner I worry if she did get in a facility that they would kick her out if she got mouthy? I wouldn't want to see her heavily sedated so its a worry. Thanks
Don't fill your head with ideas about nursing homes 'drugging' residents into a stupor, either. The DOCTOR has to prescribe each & every medication the resident takes, and that is how they are doled out by the staff; not willy-nilly, by nurses who feel irritated at residents who mouth off. They have a lot of experience with Alzheimer's and dementia patients, believe me, and they CAN handle your mother! She's not a rare case they haven't seen before. You are ONE person trying to do the job of a TEAM, that's why you are burning out & having a hard time handling her. Your siblings aren't directly involved with her, so they don't get a say in where she lives, unless THEY would like to invite her to live in their home!
It also sounds like your mom could use a hospice evaluation about now. She's losing weight rapidly and may be approaching the end of her life now. Whether you get her placed in a Skilled Nursing Facility *SNF* or you keep her at home with you, the doctor can order a hospice evaluation for her; if she's accepted, that's another layer of care she'll get at home OR in the SNF. They will keep her comfortable and cared for, bathed by a CNA twice a week, etc.
Don't think you have all the answers to the questions that exist here: GET the answers and THEN make your decisions based upon them. Go to the Certified Elder Care attorney for a consultation about the life insurance policies and how to cash them out, spend them down, etc. About how to use your POA to get things done FOR mom now, etc. Once an elder has dementia, they no longer get to make all the decisions b/c they don't have the capability to do so anymore. I was the POA for both my parents since 2014 and needed to get them placed in Assisted Living, and then Memory Care AL for mom after her dementia got very bad. She was 95 and on hospice when she passed away, in peace, last month. It's a rough road to travel, but we daughter's have to do what's best for our mother's. You're on that road now, so take the good advice you're being given here and put your priorities in order. Keep mom's best interests at the top of your list as you plow ahead.
BEST OF LUCK!
1st let me say, I don't have the answers nor do I claim to have them as I am learning about these diseases and I myself am going to support groups twice each month to learn more and get help/answers etc and to help me deal with all this as it bothers me to see her on the decline etc.
My post does make sense because I am going by what the professionals at "Medicaid" told me when we did the paperwork by phone. Our Dr even had a social worker call me and she said the same thing. Oh by the way, my mom is a retired nurse which makes her a harder patient :(
As far as weight loss, she's not losing weight now, that was when she lived alone, she had lost 40 pounds in 3 months, she eats very well and has a great appetite but she now weighs 115 and has stayed at that weight for now :)
I also thought Hospice was for the dying until I was told different but knowing when the right time to use Hospice is hard to know right now but I will discuss it with the Dr.
I spoke to Medicaid and did the papers over the phone and I was told by them (Medicaid) that unless the Life Ins was spent down that disqualified her financially and even with the Vascular Dementia/Alz she does not meet the ADL's because she is not bed ridden, she walks with a metal walker, she can feed herself and take her pills (I have control of the meds give them to her am/pm and make sure I see her take them),she goes to the RR on her own ( I help wipe her butt if needed when she poops) We have a bath bench and I help her in and out of the shower since we have glass shower doors and I help her take a bath and she helps wash some parts of her body, the most exercise she gets now is walking around the inside of the house but she sits in her chair a lot and naps most of the time and wakes up confused, rambling etc. I was told even with her decline its not bad enough to get Medicaid so unless they are lying who's correct?
Mom is more scared of how people are treated in facilities etc which comes from her being a retired nurse, I worry about that as well and cleanliness and the level of care one gets so it makes me hesitant as well. I just know this is a terrible disease and I watched my mom in law suffer with Alz but cancer killed her but she didn't have a nasty demeaner like my mom does but she saw squirrels in the couch and naked woman trying to get to her hubby, my mom is so much different with hers.
I will find an Elder Atty and see if I can get a free consult. Im glad I found this site and can't believe some of the things I read on here, Thanks for your reply and so sorry for your Loss :(
I appreciate all replies and read them all :)
Do you want to continue being your mother's caregiver? You can get her into a care facility without Medicaid being in place. The insurance policies will have to be cashed out. Her assets and property (if she has real estate) will have to be liquidated to pay for her care in a facility.
There will likely not be any inheritance.
If you really want your mother placed and are unable to get it done on your own, you can always use the last option which is an ER dump. Take her to the hospital and ask for a 'Social Admit'. A social worker will come to speak to you. Tell them you cannot adequately care for her anymore and that you will not accept her back into your home.
The hospital will admit her and keep her admitted until they find an appropriate care facility to place her in.
My mom has nothing but the bedroom furniture in her room and things in storage that in my opinion is mostly junk and some things that are/may be sentimental, she owns nothing and has nothing period! There is no inheritance so I do not have to be concerned with that thank goodness. Her life ins is small and not sure of cash value until I call/look at papers.
Wow ER dump, never heard of that and that seems so cold and heartless, I could not live with myself doing something like that, at least I don't think I could.
CareGiver, it reads like you can see well. See all Mom's health needs, see how much help she needs, see all the details involved in the financial side of obtaining care. See all the intracies of family dynamics at work too.
What's the BIG picture here?
Facts: Mom got old. She can't look after helpself anymore.
This triggered you into action. To help her. You skilled up & were a superwoman! But even superwomen need time off! This job needs a super-league!
Forgot the siblings (no superstars there), forget the money stuff for now, which ADLS Mom can do sometimes..
Fact: Her needs are too much for your home setting.
Which leads us to One question: What does Mom need?
A safe place to live, with 24/7 care.
Put your superwoman powers towards that goal & you got this.
Thank you!
If/when my mom gets to the level your mom is, I would be looking into having. her placed. As I understand medicaid and being in a nursing home (just having gone through it with my MIL), you can find a nursing home in your area that accepts medicaid and have her start living there. Any money she has (besides funeral expenses that can be pre-paid which I assume means cremation as well) goes for her care. I'm not sure how to deal with those life insurance policies but an attorney or even the nursing home that is well experienced with helping people apply for medicaid may be able to tell you what to do about them.
I don't think your mom is terribly safe at home. If she is opening the door during a hallucination, she really needs 24/7 observation which you can NOT provide. No one can. That would take, in your home, quite a few full time people which is very expensive and challenging to keep the schedule full of helpers to keep an eye on her and help her.
Good luck getting this sorted out!
This will be done by a professional that can actually certify what needs your mom has. This is required for any type of placement, it also gives you a baseline starting now.
Maybe getting her into adult daycare several days a week is all she needs right now but, maybe they recommend memory care or a nursing home. They will help guide you to services for whatever her needs are.
If you can't keep doing the care, please tell them that you are burned out and at the end of your rope. Because you matter too and they take that into consideration.
I wouldn't trust her GP for this. They NEVER want to be the bad guys. You need aging specialists.
Next thing that needs addressed is the life insurance. Medicaid doesn't allow cash value policies, period. So they have to be cashed out. This money can be used to pay for anything mom needs, new glasses, clothes, hearing aids, teeth, durable medical equipment, like a new walker, bed, etc. It can also be used to pay for day-care, in home aides or facility placement. Really, she just can't give it away, that's what would cause issues for Medicaid.
I think most important is that you need some respite. You are exhausted and can't see the trees through the forest. Can you get her placed in an AL for a couple of weeks to get your head cleared? She doesn't have to like it, she doesn't have a say so. You have to be well and balanced to help her. At the rate things are going, you will be a statistic and she will be a Ward of the state. You can't let that happen.
Great big warm hug! This disease just sucks for everyone.
Thanks!
Lucky for us our reg dr which we all see has been and is great, she's the one that got the testing started and what we now know, because I was telling her all that was going on and she listens to me when I speak, you have no idea how many times I have cried in her office and she and the staff have seen my moms nasty side to the point the dr gave me a hug and told me how sorry she is that I am dealing and doing this alone.
She is very caring. I love my mom and she and I have always been close but the days are so different because one day she's not so bad and other days she's the devil and she tells me she would sign herself out of a facility.
True the term 'ER dump' does sound a bit harsh and cold. The proper and official term is a 'Social Admit'. It's not the best way to get placement for a person who needs to be in a care facility, but it is the way that guarantees it gets done and fast. Families get the run around, the buck passing, and the red tape from everyone from doctors, to social workers, to care facilities themselves.
You aren't able to be your mother's caregiver and you get zero help with her too. I can't say I blame your siblings for having nothing to do with her from what you say she is like.
Your sister made attempts to have her visit, she got mouthy, and so was brought back home. I would do exactly the same thing. I do not tolerate abuse from anyone. I don't care who they are, how old they are, or how much dementia they have. I've been an in-home caregiver for almost 25 years. Since going private duty only around 15 years ago, I will drop a dementia client from my service if they're behavior becomes abusive. I don't care what happens to them when they're no longer my responsibility.
Your siblings are wrong to put all the responsibility of mother on you though. They should be helping you find a care facility to place her in. They're not going to though.
I'm not saying you should do an ER dump 'Social Admit' with your mother. I wanted to let you know that this last resort option is available should you need it. Believe me, many good and caring people have needed to do it and have done it. Caregiving can very easily become overwhelming for a caregiver even when they have support. When they don't, the situation becomes the perfect storm for elder abuse and not because the caregiver isn't a good person or doing their best. The ER dump/Social Admit is there if a caregiver needs it.
I agree with most of your comments….unfortunately, a lot of caregivers that came to house to help me with my mother (95 years old Bday this week) who has dementia & behavioral issues…quit & walked out…& I try to control with meds prescribed by neurologist…No offense, but with behavioral problems also lack mobility & incontinence. This is the inevitable of dementia. I’ve unfortunately taken my share of abuse…none of it was before dementia because my mother was loving & caring. I believe that is the difference…as I remember from your previous posts it was not so pleasant for you growing up? I’m so sorry, Burnt, you had to go through that. However, the Private Pay Aide that stayed since 2016 has been a big help to me & has patience. Unfortunately, not all caregiving cases are just helping an elderly person to bathroom or helping with a meal. …and don’t misunderstand..I don’t condone abuse of any kind ...just saying that is the result of dementia …Burnt, & if my mother was anyone else…I’d be outa here so fast too!!!
HUGS !!! 🤗
I truly appreciate everything you're saying. I've stayed on caregiving jobs with abusive clients who most certainly belonged in MC because they really needed to be medicated and cared for by a full staff. I stayed because I was agency hired and needed the hours. It's not about patience because even the most patient caring people have a breaking point. It's about being able to stay in control of a situation. A good caregiver with sense knows when to walk away from a caregiving job when a dementia client is beyond their control and when care needs can no longer be met in the home by a single caregiver. That's when it's time to talk to the family about other care options.
I'm very happy that your mother's caregiver is excellent. Always keep it in your mind that caregivers get burnout and we all have a breaking point.
I've done homecare for a long time and have worked every kind of case you can imagine.
I can be selective about the clients I take onto my service now because I only work private cases. The last invalid, incontinent, dementia case I had finished more than two years ago. I will not take on another client in that condition ever again.