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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!

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You’re in a tough spot, but you’re doing the best you can for your mother! I’m in the process of moving my mom into assisted living/MC and it’s been absolutely wrenching.

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!
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Alzheimer's patients do not even know what they want. I took my mother into my home. She has a beautiful room and beautiful clothes to wear. I do all the cooking, cleaning, shopping, bathing, etc. I give her constant love and attention. Yet, everyday she says, "I have to get out of this place!" "I never should have come here!" What she means is that she wants to get back to a place where the world makes sense again. Everything seems confusing to her because of the disease--not the surroundings. You did the right thing. Take care of yourself. Get counseling.
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your guilt is the voice of your Higher self...telling you something is not ok..you can do better.
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
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Imho, you did the right thing with your mother in re placement, but it looks like you'll have to set boundaries for the calling and texting. Prayers sent.
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Stop answering the phone more than once a day and ignore texts. Pick a time, and only communicate with her at that time. She's where she needs to be and will be kept safe. Don't pay for her rent out of your own pocket either. She has a broken brain, so you really can't expect for her to be or act rationally, and trying to explain things to her logically won't work.
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Try letting her live in her own apartment in addisted living where she can come and go as she pleases.
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.
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Beatty Nov 2020
I have read the OP's full description.

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.
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sorry for the issue.  (1) Stop paying for her stay with YOUR money.....get in touch with an Elder attorney or with the admin office at the AL and get your mother on Medicaid, they will handle paying the AL.   (2) yes there is an adjustment period and each one is different.  You can either call and see how she is doing but really that is just making her stress more (and YOU) or just delete the message and do NOT call.  If you want to know how she is doing, call the admin office or main nurse there and they can tell you.  I am guessing that they will have quarterly meetings with you and/or your sister to let you know how things are going.  (3) you did the right thing as its sounded like she had more than mild dementia, more in the middle of it.  everyone wants to be in their own home (feels safe, etc), but when no one can be there 24/7 to be with her it is not safe. and you do NOT want to move her in with you unless you have decided to dedicate everything to her (so unless you have good backup to take care of the rest of your stuff, forget it).  it sounds harsh but its a tough job and God bless the ones in the AL and NH that do this job.  wishing you luck.
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Since your mom is 75, she should be eligible for Social Security (SS), who pays for her care out of the Social Security Check. You can authorize the home that is caring for her to automatically pay themselves from her check. I did this with my mom and they paid themselves for her care but would leave a small amount of cash for her personal care items. This process makes it easier for everyone. Regarding the adjustment period, my mom never did adjust and would ask all her visitors to get her out of there. She also resented and blamed me as I had Power of Attorney (PoA) even though I had no choice because the state determined that she needed 24/7 private nurse care which I could not afford out of my pocket. I suggest that you talk to your primary doctor about this and hopefully your medical insurance can pay for professional counseling for you and your sister, because all this stress can affect your health and marriage & family. Sending you my prayers and Blessings. 🙏🙏
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You did the right thing and what you are going through with her now in excepting her new environment is quite common. Best is to stop answering her texts and calls. Let the home handle her. She is in a safe place and it might take many weeks for her to adjust. Her mind is very mixed up now. I went through the same with Mom.
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I agree with everyone else, you're doing the right thing. Hard as it is, this sounds like a relatively smooth transition--tho I'm sure it doesn't feel like it. But look at the positives: Guardianship was not necessary. She willingly went to assisted living. Experienced staff there led the transition to memory care. Mom has her mobility, her speech. She knows who you are. She still knowns how to use a cell phone, that's something! She's safe and you feel confident she is well cared for.

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.
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Beatty Nov 2020
Other things that happen in the real world are mobile phones go flat & get misplaced.

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.
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Dear stasia, heard enough? In reading thru these posts there wasn't a single one that questioned your placing mom in MC. Not a single one that implied you did the wrong thing. So couple those posts with the advice your getting from the facility and have a glass of wine. Guilt, resentment, stress are all emotions that can rob you of your health. So let the facility take care of mom's needs and demands and you take care of yourself

Meanwhile you might want to block the number your mom's calling from and call her at YOUR convenience.
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Boy can I relate to the "dreaded adjustment period" . I didn't see where you said how long she's been there but expect it to take 3-6 months. Also, as advised by others, block her texts so you don't have to see them. If there is an emergency, the staff will call you. As you know from her texts there are a lot of cry wolf issues and non issues even though they mean something to her. It is exhausting. However, if you don't want to block her you can text her only every now and then with a pat answer of I'm looking into it. Often that calms them down as they want to be heard. However, they often forget they even called or texted.
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.
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stasiaful71 Nov 2020
Thank you - yes, we switched her primary care doctor to the company that actually sends their nurse practitioner to the facility. She has been lovely - calling us after her visits and reassuring us as well.
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Since your mom is a "risk of flight," memory care unit is the best call. The initial signs of Alzheimer's dementia is difficulty with executive functions: handling finances, using good judgment on decisions... Unfortunately, the person with Alzheimer's dementia doesn't realize that he/she has problems - sounds like your mom's case. She is justifiably upset with her new restrictions and her anxiety and frustration come through loud and clear with her many text messages and phone calls. She needs more time to adjust to her new living conditions.

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.
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You have received excellent advice. My only additional tip is not to ignore her calls, as you will still have to check your phone and will be triggered every time it rings or pings. Block her calls and texts. That way she cannot get through to you at all.

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.
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My mom wanted, asked for, begged for a phone. By the time we placed her in a home, she had no concept of time. She was calling people and family over and over, sometimes a dozen times within an hour. She would call me at 1 in the morning and ask what I was doing. I told her she could not have a phone bc it would disturb the other residents and wr needed her to be in a safe place. She threatened the director of the home to do all the things your mother is threatening to do.....call the police, leave by walking, etc. Finally Dr put her on Lexapro. I know some people don't want to or like to medicate, but I'm telling you IT HAS MADE A HUGE DIFFERENCE! She is not so anxious and waaaaaay more calm. Also sleeping better. You and your sister cannot be there for your family if you don't take care of YOU first. Taking care of you means not being anxious about your mom. It's not easy, but you can do this. She is where she needs to be for everyone. Hang in there.
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You made the right decision and have done nothing wrong. This is a huge adjustment period for everyone. You have done everything possible for your mother. There is nothing more you can do. I would suggest disabling her her phone. You and your sister must protect your own mental and physical health.
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I agree with the others that you either don't answer when she calls or have the phone taken away.
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.
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stasiaful71 Nov 2020
It is run by the Catholic diocese and does not have Medicaid beds or provide long term care. If her disease progresses beyond what they can provide in assisted living memory care, we will need to apply for Medicaid and move her into a nursing home. They have generously given us the maximum financial aid, but my sister and I are still paying about $800 a month for her to be where she is in addition to her social security.
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Yes, yes, YES, trust the MC staff AND LEAVE HER BE. My LO “looked” so good the day I took her to her “new home” that most of the staff there thought I was the new resident and SHE was escorting ME there!

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.
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DILhagen2 Nov 2020
Anne,
your response was so thoughtful, supportive and encouraging. I’m receiving that for myself as MIL soon moving to AL
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I really needed to see this! You pretty much just described my mom. During COVID she went from IL to AL to memory care. She calls me all the time wanting to come live with me. I agree with all the advice here, but would like to add that you should continue to talk to memory care. Perhaps there is some anxiety and she could have some medication for that.
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Short answer; turn the phone’s sound off when you need to. I did & it saved my life.
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agingmother4343 Nov 2020
Me too! No more stressful triggers when my phone rings. Hard to do but a must for my own sanity.
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You are all going through an adjustment period and it's not going to be easy. The memory care facility tells you she's no trouble and she just needs to get through the adjustment phase. The professionals have told you you made the right call and yet you still worry that you did something wrong or that there is a better answer or that somehow it's all your fault and if you just had the magic key it would all be better and different. I'm going to give you the same advice I give my daughters when their babies are fed, clean, healthy and still won't stop crying. Put the baby in the crib and go take a shower, wash your hair, shave your legs and when you are finished the baby will be asleep. For you, just step away from the drama, stop taking her calls and listening to her messages and reading her texts. Only call her a couple of times a week to chat and don't listen to the complaints. Eventually she'll stop crying just like the baby does. It seems that you've made the exact right decision and that she needs memory care, the facility seems to be very experienced in dealing with a new resident and will contact you if there is a problem and now you just need to wait it out. So now, go take a shower.
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stasiaful71 Nov 2020
I love this response. Thank you. It's just what I needed. I think there is something really primal that gets triggered when it's your parent. Sadly we've been in parenting our parent mode for most of our adult lives.
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I agree with ignoring the calls and texts, there is no benefit to subjecting yourselves to the constant stress. Set up a regular time for phone calls/face time on your own schedule (weekly or every two weeks or whatever makes sense), anything that needs to be said can be addressed then.
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You did the right thing.
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.
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She may never fully adjust until her Dementia worsens. You have done what you can so far. Stop taking her phone calls and her texts. Not all members agree with me especially because of COVID but I say take the phone away. Allow her to depend on Staff. If anything wrong, the staff will call you. Or, just ignore the calls. Keep telling her the staff is there to help her. Set up a time of day or week you feel comfortable in calling her.

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.
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