I live in NYC, my sister is in Franklin, TN, near mom. We both have kids (I have one and my sister has 2 plus 2 stepkids). Mom is 75 and had been showing signs of cognitive decline for the last couple of years. She has always had mental health issues and has lived her life from crisis to crisis since our dad left her in 1989. Always terrible with money, unhealthy relationships and quitting jobs and moving from place to place when the going got tough. She was in independent senior housing for the past 2 years. The last time I saw her was over Thanksgiving in 2019.
I had been paying her rent the past couple of years. She only has Social Security (no assets, all debt) and was "forgetting" to pay so I did it because I was worried she would get evicted. We engaged a geriatric care manager because we were hearing worrying signs (memory loss, increased financial mismanagement - car repossession attempts, etc.).
They built enough trust to get her to her doctor's - primary, cardiologist, neurologist. She was diagnosed with moderate dementia/Alzheimer's. Not vascular. Between the care managers, and her friend in her building who was attempting to care for her, we were hearing more and more disturbing information. Driving on expired license and insurance, eating out during COVID, going to payday lenders, wandering her building at night, open food and bugs in her cabinets. She would call us and complain constantly about her building - there were bugs, the property manager was running "drugs and prostitutes," etc.
So we made the decision to move her to assisted living. She was excited at first for her new home. She signed over DPOA to my sister and I. Let us take over the finances (THOUSANDS in debt). Made it through quarantine and then immediately started trying to escape/walk out the door demanding her car (which we had repossessed - she owed thousands in back payments). They are locked down due to COVID, but she just doesn't get it or accept that she can't leave.
The decision was made to move her to memory care in AL. She does not believe she belongs there. She does not believe there is anything wrong with her. She thinks she can still get a job (she was a counselor) and drive. She is in total denial of her finances, etc. The past couple of weekends she has been texting and calling my sister constantly. Basically, "they are just trying to get my money," "I will shut them down," "Call the lawyer!" "I will call the policeman!" etc. The administrator says she is no trouble, this is all normal, etc.
I called her with my daughter last week and was able to redirect her, but my sister is terrified to call and the facility said, in person outdoor visit not a good idea during this adjustment phase. I have sent flowers and cards as well. Between the guilt and resentment and more guilt and worrying that we made the wrong call, the stress of all of this has been intense. I think about it all the time. Dream about it. Worry we did something wrong, even though all the professionals say we did the right thing. Would love to know how anyone in a similar situation managed through this "adjustment period," and what if she doesn't adjust? We have no Plan B and are spending our own money for her to be there. Sorry for such a long post!
Mom is now in a safe place getting 24/7 care. You can do no more. Her brain is dying little by little. You just need to go with the flow. It may take time for her to adjust. Just tell her little fibs. Needs to be there until she gets better. Which she won't. She won't understand you live far away and have responsibilities to ur own family. Which u do and ur family is priority. She probably can no longer reason or process. They canmot show empathy, they get selfcentered. Again, you have done well no one can expect more.
Limit calls to one in the a.m. and one in the p.m. and ignore all others. Your Sister and I can divide the duty, so one call each each day. You Mother is suffering from both dementia and underlying mental health disorders. You should not be spending your own money for your Mother's care now, no matter she stays in quite so nice a place or not, unless you are independently wealthy.
You should be saving for your own care needs in future.
I cannot imagine how trying this is. You need better boundaries or you and your sister will end destitute in your own years of need, and harassed to death meantime. I am so sorry for all you are going through.
I can’t remember whether I first suggested a cognitive eval be done by the MC staff psychiatrist or the staff suggested it, but it revealed that within her social shell of apparent normalcy, there was a tangle of dementia confusion that terrified her (she DID know that she was losing her memory and ability to live independently), and was forcing her to battle constantly to appear and sound “normal”.
It took a relatively long time, maybe 6 months or more, but ultimately the attempts to escape stopped and until the pandemic, she lived in relative comfort.
Your LO’s administrator is telling you the absolute truth. I lived the guilt, the sleepless nights, the anxious twisting of her lips and wringing her hands. She IS better off, especially now with the pandemic, to allow the MC staff to become her allies, and YOU DID NOTHING WRONG.
You and your family made an INCREDIBLY PAINFUL and DIFFICULT decision, based on your love for her and your desire to keep her safe and well cared for and as comfortable as possible. In her case, the BEST decision wasn’t a very happy one for anyone, but STILL, the best one you had access to.
Contact her less, don’t respond every time she contacts you, ease off. For MY LO, I suggested to the MC staff that if LO became agitated, she could call me. I’m her last relative within a thousand miles, and I was able to soothe her, fib to her if I had to, and tell her I’d be around if she needed anything, familiar innocuous stuff that was always a part of conversation when she was well.
For yourselves, start regarding HER TALK as a product of her diminishing cognitive level. She can’t co trol it and it’s not based on reality.
We’re all part of a big supportive “family” when we begin caring for someone who has dementia. As sorry as we are to join the family, it’s a place where you can always feel at peace. We’ve been there, and we know.
your response was so thoughtful, supportive and encouraging. I’m receiving that for myself as MIL soon moving to AL
Does the facility where she is now have beds that are for Medicaid recipients? If so you might do a bit of planning and begin the process of applying for Medicaid. Usually after a specific period of time many facilities (that are not strictly private pay) will keep a resident that has previously been private pay when the funds run out and Medicaid kicks in.
It is difficult, just as she was probably concerned when you went to school for the first time and kept saying you did not want to be there. Eventually you settled in and found your place. She will as well.
I have had to do this with 2 different people. On my phone if I call a blocked number, I have to reset the block.
If there is an emergency, the facility will call you.
If she doesn't settle down in a month, she may need a consultation with a psychiatrist who handles Alzheimer's patients as well as those with mental illness. She/He can prescribe medications to help your mom to relax a little more.
Is her doctor on staff or an outside doctor. Can they give her an anti anxiety agenda perhaps?
I'm glad you and your sister have each other as you will want to be a team soon this and on the same page. My sister and I would take turns being "on call" with staff so that one of us could get a break. You can also ask the Director or nursing there to call a care conference to see what can be done.
I feel your pain.
Meanwhile you might want to block the number your mom's calling from and call her at YOUR convenience.
She doesn't want to be there, and legally without guardianship she can't be held there against her will, but she can't plan and carry out the steps required to just leave the building, even with her phone. I've read many comments on here saying "the elder law attorney said we can't force her into care against her will." But this is the way it works in the real world--she can't figure out how to get out, so she stays.
When my mother was in the early months of memory care, she had phases where she was totally lucid and rational and could make a very good case to anyone why she should leave. But despite all her verbal arguments, she was not actually able to plan and carry out the simple steps of leaving, which would've been: gather her things in a couple bags, call a cab, stand at the front door and wait for the cab, and when the cab arrives, insist that a staff person open the door. When the cab got to her house, she would've knocked on her neighbor's door, gotten to spare key to her own home, and looked for her checkbook or card to pay the cab (I had already removed checkbook and cards from her house.) But she didn't do any of those things! Why? Because she has dementia! Every day, 3 times per day, she had to re-learn the way from her room to the dining area.
She could speak and converse so rationally, and I was worried for over a year that she would call her bank and order new checks to come to the memory care address (which she found on various stationary and newsletters). But she didn't. One thing she did several times--she called and left messages for the attorney who drew up the POAs shortly before she fell. How did she get the number? She used the facility's phone, called directory assistance, and asked for the number by name. Some times, aides helped her do this--apparently they are legally required to help her contact the outside world? I asked the attorney not to return mom's calls, and the attorney respected my wishes.
The facility is legally required to mail any envelopes she gives them, but the facility also offered me the option that they will mail the envelopes directly to me, so I did receive several letters she mailed out to the attorney and the neighbor.
Helpful aides may find misplaced phones & plug them in quite often, but they won't replace lost or broken phones/chargers. They will be gone or useless unless family re-purchase.
Being in a home is not where I would want to be.
Maybe you could try letting her live with you and have a Caregiver help.
DI what you would want done if it were you.
Let her live back in her own apartment and use her Socisl Security to pay the rent and utilities and have groceries delivered to her.
You can install cameras in her Apartment to kerp an eye on her.
Adults may make mistakes just like kids did growing up but if she still has a mind even tho her choices may not be yours, she wojld be happier in her own apartment.
Yes Mother may *think* she will be happier at home... The reality will be very different.
Less resistive options were already trialed & found to be insufficient. Due to multiple factors, she could not thrive living independently, then self-neglect in senior independent housing due to cognitive decline.
Bev, I know you are a great advocate of aging in place & I agree it is appropriate & wonderful for many people. I certainly support freedom of choice where possible.
For others, it would be simply neglectful.
I wonder have you ever tried caring for a person with severe mental illness or dementia who is 'happy' living alone? I have. Residence containing rancid food, vermin, offensive
odours, soiled bedclothes etc. Family tried daily caregivers (often cancelled) but 24/7 was care required.
I certainly would not want my relative to be left in this way when they have lost capacity for decision making.
There is a better solution for your Mother, you just haven't found it yet.
Your Mother is telling you relentlessly that she is very unhappy.
Please be willing to hear her.
You spoke about your Mothers many unstable behaviors in your post, as if to validate your decision to have her in a place she really doesn't like
We are all crazy to some degree...some hide it better than others
On the other hand, your words carry true care and love for your Mother
I am sure there are many wonderful qualities your Mother has that have made you love her so. Even though you are a conservative young lady yourself, and not inclined to the 'fits of fancy' (as the writers of old would say) like your mother
I suggest you consider speaking to social workers, welfare workers, counsellors attached to hospitals..and searching on Facebook for programms, grants etc.
There are many support programs available for the elderly at this time. Don't accept no. Keep asking. Its a research project for you
The Cares act has provided both grants and resource centers to help care for the elderly.
Its also a good idea to speak to your local politician for your area.
From what you explained your Mother needs some care from others, and also freedom to move.
Otherwise she is a butterfly in a jar with a tightly closed lid, and will deteriorate rapidly
If you have the opportunity to sit and speak with her outside, I encourage you to do so. (despite what others recommend) You, i think, are more intellegant and in tune than most.
I am such she will be very happy to see your smiling face and have a hug
If she talks about being "trapped in this place" etc you can tell her honestly "Im working on a solution for you, please be patient"
When things seem upside down, and there's no solution in sight, there's a wise saying that I remember from my great grandmother
I hope it will help you in your time of uncertainty
"When the motive is pure, the way is clear"
l
I’m going to chime in on the phone issue; I talk to my mom daily but yes to the ringer off! I went one step further and got a second number and a second phone that MOM DOES NOT KNOW ABOUT. After the initial payment, this ‘dumb phone’ costs me 6$ a month. Some days mom calls INCESSANTLY ( to mostly complain ) but I keep the ringer off that phone and can give out and use my second number as I wish, and I keep the ringer on the ‘stealth phone’ on. This has worked REALLY well. I’m sure moms phone use gives the staff a little break too.
Huge hug and wishing you the best!