My mother has vascular dementia, has lost her license and depends on me for grocery shopping, scheduling doctor's appointment's and interpreting their comments, ordering and giving her her medications, making sure her dogs have meds, calling repair men...use to do her bills but she has accused me of stealing from her. She's told everyone she talks to friends, neighbors, other family members, her cleaner. She got her neighbor to get her into her accounts and the institution determined that I had not been stealing, nothing had been taken out of the account. But she is still accusing me. She has not gone back to anyone and told them that I actually had not been stealing. That same neighbor gave her her Humira injection and I almost gave her another one the same day. I happened to see the used pen on the counter just before I gave her the shot. She blames me for losing her license and not getting it back for her. I spent one year setting up tests neurologist, GP and driving school. She did not past any of the tests, not even close, including cognitive function exam. That was two years ago. I have not stolen from her. I do her paperwork for her. She sat at the table with me while I paid her property taxes online, gave her the receipt and she still accuses me of stealing the money. I've taken care of her for the past 3 years and the previous 4 years I took care of her and her then boyfriend who was in a wheelchair from a stroke. And it goes on and on.
I've hired caregivers to come in and help--but she either runs them off or won't let them in. She did let one come in but would not pay her. I had to pay her. My sister and I both have tried to get her to go into a residential facility but she refuses.
My mother told me that I don't do much for her. I can't do anymore and I'm thinking about doing less. My sister lives 3 hours away so I do everything.
I'm so tired and unhappy.
Stop doing things for her. Let her realize she DOES need help. If she calls you for help tell her that it's time for assisted living. If she refuses and expects you to endlessly prop up her charade of "independence" with little appreciation tell her you are done. She can either go to ALF with your help and guidance, or the state can decide her future, how her money is spent, and what facility she ends up living in.
See if that changes her tune.
I hope someone has POA because its needed now. If its effective upon Mom being incompetent to handle her own affairs, then time for you to take over. Get a letter from the Neurologist confirming the diagnosis. Its now what Mom needs, not what she wants. She is not capable in making informed decisions. You need to make those decisions for her. If she can afford it, an AL would be nice. If not, that may be a problem because Dementia alone may not get her into LTC unless more advanced.
Try (and its hard) to let what Mom says roll off your back. Chalk it up to the Dementia. Not sure why, but money always seems to be something they are fixated on.
Your neighbor seems to be a good person. You might mention that if she gives Mom a shot, she needs to inform u she did so. Actually, I would not have any medication within reach of your Mom. I did a med planner every week for Mom. That and her meds went on the highest shelf in her kitchen cabinets. My nephew gave her her meds daily. Never letting her see where he got them from.
The one they see/rely on the most is usually the one pooped on.
The meds need to be out of reach for others, including the neighbor.
If you understand dementia, you understand this is what they do/say.
Their reality has changed and you have to adjust to it, not change it.
Hard as it is, try to let these things roll on by. Don't take them to heart.
As for the finances, I would ask sister to take her out and take EVERY bill, statement, any and ALL paperwork out of the house. I had to do this with my mother, after I took over her finances. She was digging out old papers and confusing me with them! Out of sight, out of mind. She never asked about them. I didn't live nearby, so I temp forwarded her mail to me, so I could get all the billers, addresses and phone numbers and have billing address changed to my address. From there I could set up payments online every month (I don't do the auto-pay.) This doesn't work for federal mail, such as SS paperwork. If you are managing her SS funds, you should sign up as rep payee (legally SS requires this anyway.) If she doesn't see any bills or statements, she can't complain about them! I took POA to CU and changed the address on the account (she had added YB and I already long ago.) The one thing I missed was the insurance, as that was billed/paid yearly. When that came, she called the bank to get checks. They were sent to me. She called again and was told I have them. Never heard a word from her!!
It's nice to want to share with her and explain, and show her, but this is what is in her head and you can't change that. As for what she tells others, unless they are going to poke their nose in, ignore it. If the bank checked and said all was good, get it in writing - if need be, show that to the busybodies to shut them up. Tell them mom has dementia and THINKS all kinds of things are going on that are not. It's none of their business, but if telling them this will stop them poking in where they aren't wanted, go for it!
For moving: mom's plans before dementia included AL. After, nope. I tried various times to bring up AL, nope. Brothers suggested living with them. Nope. Initially I tried bringing in aides, 1hr/day, to get her used to them and planned to increase days/times as needed. Nope. Less than 2 months later, she refused to let them in. So, plan B was to find a nice place for her. EC atty told me we couldn't force her to move, despite having dementia, and we would have to seek guardianship. Facility chosen wouldn't accept a committal. So, we had to create a scenario. She was actually the catalyst, as she injured her shin and developed cellulitis. YB wrote fake letter from Hospital saying she either moves where we choose, or they will place her! Madder than a wet hen, but she went with bros (I stayed OUT of the actual move.) Once in MC, she can't get out, so despite begging YB (never me!!) to take her back to the condo, she was there to stay. 9 months later, she forgot the condo and focused on her mother and her previous house (40+ years gone and 25+ years sold.)
So, start planning now. Check out places and make a plan. Get all the paperwork out and have bills mailed to you. Figure out what furniture and clothing, etc will fit in the place(s) you like. When the time comes, have those items moved while you and/or sister take her out, and bring her there, presumably for lunch or dinner, then excuse yourselves to use the bathroom or something and leave.
When dementia is at work, we can't wait for them to agree to anything. Mom was adamant and repeated all the time that she was "fine, independent and could cook." Answer: D - none of the above. We couldn't leave her there, as anything could happen. If we hadn't planned the move when we did, the cellulitis could've killed her before I went for the next visit/grocery trip! Wandering. Starting fires. Falling/getting hurt. Other medical emergencies. There are just so many dangers for those with dementia!
If Mom does end up with hospitalization (almost a given with vascular dementia) you may have a social worker who, with one simple call to a judge, can get you "temporary guardianship" and who can find appropriate placement for her.
Piper is correct in that when we on forum see the words "but Mom refuses" it triggers something within us. My brother was diagnosed with "probable" early Lewy's Dementia, and was still so with it that he literally BEGGED me to help him sell his home, get him settled in a good ALF, take over management of bills, account, become Trustee of his Trust and keep him safe. That so rarely happens. Usually what happens is what is happening to your Mom and you.
Think of utilizing APS for "adult at risk" when Mom doesn't allow your care, and is in a position of being possible prey to a group of people "caring for her". In all likelihood these are good and caring and concerned people. But it only takes that one bad apple to lead to catastrophe in some way.
Could you elaborate? Is there something about vascular dementia I haven't seen? Honestly I don't think waiting for that "emergency" is the right way to tackle the issue. It is often suggested, and that's fine for those who aren't cognitively challenged and refuse to move. For those with dementia, we still aren't "allowed" to make them do what they refuse to do, but we have to tackle these issues with some sense! Police won't take license away until AFTER the accident. Am I going to wait for mom to kill herself or someone else? Nope. Same for her refusal to move. Guardianship gives you the power, but the facility wouldn't take her if we did that. We just had to get creative, come up with a plausible fib and take her there (staff actually told me "just get her here, we'll take it from there.)
Mom was and has been healthy and doing just fine in MC these past 4 years. NO hospitalizations. We never had her tested, but all fingers point to vascular dementia. In her case, I don't see why she would have ended up in a hospital if we didn't have to move her. She was already 90 or 91 when I realized something was up and did my research. She was 92-3 when we moved her to MC. No medical emergencies, living there almost 4 years, until she had a stroke early October this year. She REFUSED to be taken to the hospital (EMT called me, like I'm going to force her to go? I left it for him - if YOU can convince her to go, fine, but NO hospitalization. Not even sure what taking her there and testing was going to accomplish - she refused still. She even got mad at the nurse for calling them!)
Now, in my reply to another comment, I did mention cellulitis, which is a serious infection. She injured her shin, didn't mention it to any of us, but did tell neighbor she "bruised" her leg. Neighbor called me to report this. I was unable to go check at the time, but OB was arriving the next night for the planned move. I instructed him to send a picture and when I got it, I had to almost threaten him to take her NOW to the ER. So, yes, she had to go to the ER, but that would NOT have happened if we weren't moving her!
That said, most likely if we were not moving her at that time, she wouldn't have made it to a hospital - she'd be dead. She didn't have enough sense to know it was bad and could lead to sepsis. My car was out of commission and next trip down to get or bring supplies and visit probably would've been too late.
So, I'm not a big fan of the "wait for the emergency", not when dealing with those who have cognitive disorders. They are a walking disaster waiting to happen! Although we can't force them (even staff told me they can't force residents to do what they refuse to do, they have to get creative and coax them, often making it seem like their idea!), there are ways to work "around" the refusal. Given a choice of having my mother injure herself, burn the place down, wander and get lost, better to have her pissed off at us!
Of course. From Mother's point of view: Why leave her home? Where she is comfortable. Where she has daughters at her beck & call.
So the current arrangent works for Mother. But does it work for you? For your Sister?
If not, obtain a Social Worker to assisted with the steps necessary.
This may be adding non-family home help - or it may be placement in a memory care residence.
Vascular Dementia is a beast - robbing people of their empathy, reasoning & judgement (although some personalities may have lacked empathy & been entitled since year dot...)
If reason is gone, you will need to go behind the scenes & just arrange it.
Many hope for change but I find being ACTIVE is better.
Best of luck. Let us know how you progress.
Or the hospital emergency...
ACTIVE IS BETTER! Otherwise, it might be too late...
I posted some of what we did in response to other comments.
You've done more than enough -- caring for her boyfriend and her. She should not be living by herself. And you know that.
No one can force a parent to go into a facility.
Adult children become frustrated. Parents become very dependent on their children.
It’s a never ending cycle! Honestly, your sibling could live 5 minutes away and still do nothing! I dealt with this in my family. It usually does fall on one person.
Does anyone have a perfect answer? Nope! It depends on your particular circumstances.
I do wish you the very best and hope with all of my heart that you find the best solution possible for your situation.
You are tired and unhappy. The only thing that will make you feel less tired and less unhappy is joining forces with your sister and putting her in ALF. Stop propping her up in her charade of independence. Her needs will only increase.
Stop her as soon as she starts accusing you of anything. Tell her "No, you will not speak to me like that".
Until you find a spot for her, please pay caregivers using her checkbook, not yours. If she doesn't like it, that's too bad. You just need to get through the transition period between her living alone and moving to ALF.
You need to have a heart to heart with your sister. You need to be honest with your sister that you no longer can "do everything" for your mother. Ask her to tour ALFs near her. Tell her you will be touring ALFs near you. Get the ball rolling.
"My sister says she would help my mother if mother went into a Care Home and made my sister successor trustee."
and
"...diagnosed with vascular dementia since 2009..."
Not likely your mother is of sound enough mind to make these changes. Sometimes in early dementia they can still sign paperwork, but now? I doubt it. Even the change in 2013 might be questionable, but that's not the subject here. Also, talk is cheap. She *says* she would help (how many on the forum have heard that before???)
"I was one of those who promised to never put her in a home."
Hindsight, 20/20. Very often we recommend not saying this to a LO. All too often is isn't a promise we can keep. However, even if you DIDN'T "promise" this, she'd still refuse to move. That isn't the real issue, which is how to get her to move. We had to use a fib to facilitate mom's move (elsewhere discussed what EC atty said and what we did - mom was NOT going to move!) I never promised my mother anything. The biggest issue, esp for older adults, is what they have for images of a "home" - dating back SO long ago! They were likely dreary awful places!
This is a promise that you are going to have to break. You either need to find a place and move her there, or give in and let the state take over, but either way, she'll end up in a "home." It would be better for you and her to choose the place that YOU like, and not let the state make that decision, plus take and allocate ALL of her assets.
"She refused to pay the last home care giver I hired, she ran her off and I had to pay."
Do you have POA? Why on earth would you pay if you have POA? Use her funds to pay. I never asked my mother to pay ME, but would have her pay for items I purchased for her. Once I took over her account, I was able to get a debit card in my name for her account (two of us were on the acct.) I use that for her purchases.
"She won't even let them in."
Been there, done that. Tried bringing in aides with plan to increase when needed and keep her in her own place longer. Less than 2 months, nope, not coming in!
"I need to find out if I'm obligated to take care of her because I'm successor trustee."
"A Successor Trustee is the person responsible for administering the trust after its Grantor either passes away or becomes “Incapacitated” – that is, unable to administer the trust for themselves." (www.freewill.com)
NOTHING about that talks about caring for the person. Some people even think accepting POAs means you care for the person - NO. Even guardianship wouldn't require caring for the person. ANYONE can be named a trustee, POA or guardian, even a non-relative. Do you think they would accept that "honor" if it meant caring physically for the person? Nope!
"I wonder if I can refuse to be ST."
That's a bit more complicated, BUT, it could take legal action and if there's no secondary appointed, does the state step in? I wouldn't recommend resigning or trying to change the trustee. You are NOT required to care for the person, just managing the trust when they no longer can. Caring for her is what we need to focus on. Finding a way to move her to a safe facility, despite her refusal to move. I also touched on this in replies to other comments. I will repeat here that the EC atty told me we couldn't force mom to move, despite dementia, and suggested guardianship, but the facility wouldn't take her then. We had to "wing" it, and come up with a fib scenario that worked. Better to have mom angry with you from a distance than what you're dealing with now, all the time!
I also discussed what to do about the finances in other replies. You need to get all paperwork out, have billing address changed to yours, sign up for rep payee, do not work with her on finances, take it over and away!
In the end my sister weighed 97 pounds I ended up having to place her in a home!I was her only family!There are many changes Alzheimer patients go through-none the same as another person!Its seven years now & she does not know me can only have puréed foods!
They take very good care of my sister in the nursing home & that’s all I can ask for! Don’t make yourself feel guilty it is the disease!
I sending you ((hug)) and strength. You're in my prayers. Take care of yourself.
She can order her own groceries to be delivered.
Onice she sees that things can't get done then she'll realize what you do.
If she is unable to handle her finances then she needs to sign allowing you to handle them.
If she has a checking account and everything is set up Auto Bill Paid, then just the Checking Account Statement will show where the money went and what for.
Tell the neighbor that you appreciate her willing to help but to mot give your mom a shot without letting you know because you almost gave her a 2nd one that day.
Maybe the neighbor lady can be paid to be a Caregiver a couple hours a day
She didn’t want to go to a residential facility either, and probably should have gone into one at least a year before she actually did. I told her that she needed to move to a new apartment and that’s what the facility was. I didn’t go visit her (pre Covid) for a while after she moved in because she had become so hostile toward me.
Detach with love and do what you can. But do not accept or internalize abusive behavior. Since she has dementia, it is not really her choice whether or not to go onto a facility—she needs a lot of help and she’s making it impossible for you to give it to her. Just let her be mad about it, over time she will settle in. Ignore feelings of guilt. You are doing an amazing job regardless of what her illness tells you and you are not meant to shoulder all of this indefinitely.
I'm so sorry to hear what you are dealing with. What you say about your Mother is very similar to my experience. Very accusatory to me. I know I am lucky that my Dad is still alive and does most of the day to day items, I handle the medical end. She has even gone as far to say she will call the authorities on me. I keep a copy of her medical paperwork with her diagnoses in my car, to give me some comfort when she does that. I recently had a friend tell me, those with Dementia, you can't have them come into your world, you have to let them accept you into their world. I'm still working on how to do that.
For your Mom's safety, you may want to call her neighbor and set up a time to talk. Thank her for helping your Mom, sounds like she can help you. Show her your Mom's medical diagnoses. Work out a system so she is letting you know is she gives your Mom any meds so its not duplicated.
I hope this helps you some. Good luck!
You are too kind. Literally. You have a big heart and you want your mother to have the kind of care that you think you would like in her place. However, that seems not to be what she wants. If she wanted the caregivers she would let them in.
Stop. Catch your breath. Then leave your Mom alone for a while. Do less. A lot less. Give it a few days or a week before you arrive at her doorstep again. Do only what you really want to do, not everything that you think ought to be done. Let your mother live the way that she seems to think she wants to live for a while. Close your eyes to the mess.
After you both recover from the struggle between you caused by you trying to give more "help" than she thinks she needs, reassess. Talk to your mom about what she really wants, really needs. Do not impose on her your desires for her. Rather, let her know that you love her and want her well-cared for, but that you will listen to what she wants. Let her have less care if she wants it--so long as she is not physically in danger she has a right to live as she wishes. She may prefer her privacy to a perfectly kept house. She may not mind if she wears the same clothes 3 days in a row. Believe me, she would much prefer to see you as a friend and daughter than as a control-freak keeper. In her mind that may be what you have become. Think about the facts: she is nearing the end of her life, she is not capable of everything she was accustomed to doing 20 years ago, she wants to be able to do what she can for herself, she wants some peace and quiet. You cannot remake her, it will be easier to adapt to who she is now and who she is becoming. When/if a move to residential care is necessary it needs to be a choice you can make together, if at all possible.
Now, about that sister thing. I live a 20 minute drive from my Mom, another sister is even closer. One sister lives 2 hours away and really can only phone Mom, which she does daily. The one sister who takes on so much also lives about a 15-20 minute drive from Mom. I know she wishes that the other 2 daughters living close by would do more. What she doesn't see is that we are doing what we--and Mom--want done. We are not interested in becoming housekeepers, launderers, slaves; we are interested in making Mom as happy and comfortable as we can in her waning years. We keep her company, do fun little things with/for her. In our minds, when Mom wants to live in a place where the laundry and housekeeping get done for her she will make arrangements for such a place. We see our duty, as daughters, to care for her emotional well-being, not everything. So the other sister doesn't understand us or our positions, but we don't argue about it. We each do as we see fit.
You may want to ask your sister to make regular phone calls to your Mom to cheer her up and to help keep tabs on her. That is something she can do to help you. You might be surprised how much easier it is to get a 2 minute call from your sister with the report "I talked to Mom, she's fine" than to do all the checking yourself. I urge you, don't even try to do "everything." It is more than anyone should try to do. But, you are like my sister, and I think you will have a hard time letting go. Please try, you deserve some peace and quiet yourself.
It sounds like your mother needs to be in a locked facility "if" she won't allow caregivers in the house - or that she should not be living alone and may need a live-in caregiver.
The brain is - has - changed and this manifests into fear, fantasy, hallucinations, etc. Once you understand that it 'isn't your mother' talking - it IS the dementia acting out. and that she cannot help it, you will not take her behavior 'so' personally. This requires you being willing to shift out of your current automatic thinking behavior.
The main (if not only) change you can make is how you deal with yourself. Learn to stay grounded, centered, focused. "Of course" you will revert to feeling hurt, angry, etc., however you need to quickly check yourself and re-align.
Re-aligning can take different forms / behaviors of yours:
1. re-affirm that this 'isn't my mother' it is the dementia talking/acting out.
2. Learn to shift into compassion (for your mom and YOURself).
3. Have a response ready and insure it is not confrontational or create a response in her to be adverse, i.e., "I understand how you feel."
4. As you can, remove yourself from the room for a minute to an hour to however long you can to regroup and give YOURSELF compassion and self-love.
5. Lower lower and then lower again your expectations of your mom. In fact, I learned decades ago in a workshop to NOT have expectations. It is not easy although it is a healthy mindset to develop for your well-being and equanimity.
6. You are headed for or already in BURNOUT. You need 'a village' of support - enlist volunteers, church people, dog walkers, and socialization support through phone calls to your mom (and you if you feel it will support you).
7. Check into social services (IHSS?) for seniors.
8. Learn how to find balance in your own life by creating 'pockets' of self-love time -- even 5 minutes to meditate, buy yourself some flowers as a reminder of the essence of goodness you are . . . keep / start a journal to get out anger, grief, sadness.
9. Realize you can only change yourself, not your mom - or perhaps not your sister.
10. If your sister can't be there in person, ask her to contribute $ to find careg or someone to give you a regular respite.
11. Let us know here if you try any of these suggestions and how it works for you. Changing yourself (ourselves) is often NOT easy. Our life depends on it, or certainly the quality of our life. Get into therapy if you can. Enlist social services if they are not currently involved.
12. In line with no expectations, do realize that your mom is confused, fearful and lashing out due to how she feels about herself and her life; it is not about you. Gena
Caregivers hired would be working for you so that she cannot fire anyone. You'll just have to explain that to them at the onset. Make sure they have access to a key to get in the house if she won't let them in. If mom understands things at all, explain that these people are coming and if she gives them grief, she will have to go to a safer place to live. A neighbor should not be dispensing meds to her without your knowledge - so you may need to talk with the neighbor. Some folks with dementia can be very coherent at times and convincing to those who aren't around them all the time. So approach the neighbor in a way that you are giving her info about the diagnosed dementia and need to avoid having a double dose of meds given.
If your mom is still harping on driving and, perhaps, still has a car. Disable the car and put a note under the hood so that some one doesn't fix it for her. Let it sit in the driveway as a broken vehicle that cannot be fixed if you have to. And avoid the argument of selling or removing the car.
She has really reached a point of needing caregivers in the home. If there is any way to reach her, in a conversation, put emphasis on 'her' safety and see how it goes. You're in a tough spot for sure, but doing less is going to result in the accident that will eventually happen for her. If she doesn't have option of living with you or sibling, it may well be time to go to memory care facility. Dementia is so hard for everyone involved.
youve been on this forum long enough to know this.....
1) Most likely having a rational discussion with your Mother is a passed thing by now. So you can tolerate her bahvior
2) Tell her and for that matter put in writing to her you can no longer tolerate being treated like this and she is on her own. You and your sister should have this conversation with her together. There comes a point your personal sanity and well being can no longer take getting kicked in the head and you have to protect your own well being.
3)If you had Power of Attorney you could arrange to move her to a facility without her going along with it.
In these final years of life there are no easy answers. My wife and I tolerated her Mother for many years. It demolished our marriage. Finally my wife could no longer tolerate her and put her in a home. You make no mention of a spouse for you?
family member. ( meds, bathing, groceries, need for rides, meal consumption...)