I know this has been talked about at length, but I just need to vent to those that understand and I need a connection to those going through similar situations. Mom is 80 and has Alzheimer’s just like her dad before her. She put my grandad in a nursing home when he could no longer live alone. Mom doesn’t know she has Alzheimer’s and if I ever try to tell her, she adamantly denies it. She says, “I’m so tired of that story I could scream, come up with another one.” She lived alone after my dad died 13+ years ago, but she thinks he’s still alive and “left” her for another woman. After a couple incidents at home, I moved her into a Memory Care facility in her hometown back in August. I am 7 hours away. My brother lives in town. I call every day and my first visit since she moved in is next month. I know she will beg me to go home when I visit. I feel extremely guilty that I am not there every day with her, even though I am trying to work full time and raise two teenage boys 3 states away. I talk to her every single day. And every day she literally cries and begs me to come get her and let her go home. We can never discuss anything else because she starts begging as soon as I say hi. Please come get me, why can’t I go home, etc. She thinks my dad has left and won’t come home because she’s not at home and he’ll “never find” her. She cries and cries and after trying to change the subject a few times, I just tell her I’ll talk to her later. Going home is not an option. I don’t think her last home is the home she’s even talking about because sometimes she talks about her mom and dad being at home and they’ve been gone 30+ years. She refuses to participate in all the community activities available to her even with the workers encouraging her. I was there for 4 days after she moved in, and I know they are good people there. We have other family that have stayed there before. But the situation is simply awful. She says every day that my brother brought her car to her (obviously not true), but the b**** at the front desk won’t let her out. My brother refuses to visit her because he “can’t take her crying and begging”. She has 2 friends that help me out by visiting once a week at different times so that I know someone is visiting twice a week and that she has the things that she needs. I tried “the doctor said you can’t live by yourself” non-truth, but she questions me “What doctor, no doctor ever told me that, find another doctor”, etc. She thinks I’ve left her in a loony bin with “all those crazies” that are there with her. She’s taken to staying in bed and refusing meals unless they bring them to her. I’ve never heard anyone so adamantly wrong about everything she says – and says it with such confidence! She tells me I’m doing this because it’s convenient for me and that she can’t believe that I have done this to her and that of all people, she can’t believe it is me. She tells me someone steals her phone every day even though she’s talking on her phone. When I point that out, she just says, “My other phone, I’m not stupid” - we all know there is no other phone. I know she doesn’t know what she’s saying, but it has gotten to where I dread calling her and I’ve blocked her number so that I only have to talk to her once per day after I've built myself up to make the call. I have considered taking her cell phone away, but I feel it’s the only thing that makes her think she has any independence. At least I removed all her contacts after the first day because she called everyone asking them to pick her up. I feel so terribly sad, as I know all others in my situation do, and I know it’s grieving for the loss of the mother I knew. I tell myself not to feel guilty, that she is safe and being cared for, but she is so miserable. There is no alternative and at some point she will have to go to a skilled nursing facility, which she will hate even more. Thanks for reading my rant. Any words of comfort would certainly be appreciated.
Secondly, guilt is inappropriate to this situation. You are not a victim and she is not a victim. Alzheimer's is a disease. Whether we get it or not is not in our control or anyone else's. GUILT requires causation. That is you cannot be guilty of something that you did not do.
You did not cause Alzheimer's in your mother.
You cannot fix it.
Therefore you CANNOT BE GUILTY in any way in any of this.
The other G-word (and words DO matter) is GRIEF and grief is appropriate to this situation.
Thirdly, your mother HAS HAD HER LIFE. You now have a right to your own life. And it is CRUCIAL that you care for your children as your obligation is to them, and if you are using time on your mother that they require from you, then THAT is worth feeling guilty about.
Fourthly. You are NOT responsible for your mother's happiness.
No matter what you do, you cannot make OLD AGE in the best of circumstances a happy time. It is a time of loss after loss after loss from hair to hearing, from consciousness to continence. And I, at 82, could go on at length here.
Now down to what does need to happen.
1. You have placed your mother in care.
Good on you. Because her care is now requiring several shifts of several people each to care for her.
2. You must expect and accept her grief. Your mother will beg you to take her home to the home she loves. She may rage. She may cry. She may do both.
You need to meet this with calm understanding, telling her you are sorry but it is no longer safe for her to be home and you cannot care for her. That this is now her home and you will visit. That there is nothing that you can do to change this. That you understand her grief and that you are also very sad for her.
You may need to say this over and over and over and it may STILL make not the slightest difference.
3. Keep visits short. Your staying there longer and having her grieving, mourning, crying, begging will cause her only more suffering, and to no avail. If you leave her attention can be/will be directed to others.
4. Expect the unexpected. Elders fall. That is inevitable no matter where they live. Falls are often more common in care places.
5. Accept that your mother may eventually need medications to give her more peace and a sense of calm.
6. Do no heroic measures now. If she doesn't wish to eat, that is a good thing. If she wishes to sleep that is a good thing. There is no sense to prolonging this. There is no cure, and your mother is in torment. You must stand witness to that torment. There is no longer a cure for this. Happiness is out of the question; you cannot create it. Nor do you have any right to rob your family of your own loving gentle spirit at as much peace as you can create.
I don't have any other advice. Other than that she should not have a phone. That should be brought to her when YOU call. Alzheimer's and phones doesn't mix well.
If you hate any advice I gave you, then kick it to the curb and let others give you help that better suits you.
I am so dreadfully sorry. You are as well. And that nets you no gain either. You are one of 100s of thousands going through this dreadful disease and the longer we live the more of us there will be facing this crucible. Again, my wishes are with you, but you MUST take care of yourself and your family and you must understand your mother has had her life and you must accept that her leaving will relieve herself and the rest of you from this dread disease.
Love yourself.
You deserve happiness, and your kids need you. You are where you belong, your boys need you.
If your mom was healthy, she would say the same thing.
Can you maybe try calling mom every other day?
Your mother has regressed in time, mentally, to when she was a young woman or girl and lived with her parents, most likely. That's the "home" she wants to go back to. My mother insisted on riding the subway (in Colo) to go see her (long deceased) parents and siblings in NYC on a daily basis. She then accused me of locking them up in the closets at her Memory Care Assisted Living facility.
Your mom needs calming meds. Ativan worked pretty well for my mother to get her off the looped thinking cycle she was on constantly. Or to at least calm her down so the agitation level over it didn't keep her crying and raging all day.
This situation is horrible, there's no two ways about it. It's very difficult to hear/see mom like this while knowing you cannot take her in. And even if you did, she'd STILL beg to "go home" since your home is not the home she's seeking. Dementia patients seek a place in time they call home; a comfort level they no longer feel due to confusion. It's humane to medicate them to where they can function w/o crying and carrying on all the time. Then they can adjust, eat with others, enjoy some activities, go outside in the garden, etc.
None of this is your fault and there's nothing you can do to fix her dementia. If there was, I'd have done it for MY mother to prevent the anguish we both suffered for a very long time. Dementia is cruel and we all lose when it rears its ugly head.
I had a hospice evaluation for my mother the moment I thought she'd qualify. In November she Showtimed her way to a rejection. In December I had another nurse evaluate her and call ME first so I could give her a heads up about moms predisposition to lying, pretending to be fine and putting on an act. She was approved that time under the Medicare code of Senile Degeneration of the Brain. She passed away, unexpectedly, 2.5 months later. Peacefully, thank God, at 95.
I wish you good lugood luck and Godspeed as you endure this journey. Pick up a copy of the book Understanding the Dementia Experienced by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and not internalize moms issues, to the best of your ability. It's a tough road.
you'd have done it already. Apart from trying antianxiety medicines as others have suggested, it sounds like you've done all you can for your mom. So knowing you've done all you could should ease your mind that way.
As for the future going forward. Well, it's sad but it's not your fault. You can't sacrifice yourself for your mother.
My hubs is going through something similar with his mom now. She just lost her husband and now he and his sister are knocking themselves out to fill the void he left. She wants someone with her every second of the day. They are draining their parents savings paying care aides to be with her when they can't be. It can't continue for long.
But as I told my hubs just today. You still need to live your own life.
I wish you the best.
I am at this very moment ignoring my sister’s nearly daily sundowning texts that she’s “ too young to be put away “. Etc .
I’m surprised she can still text . She’s only 69 ( will be 70 in four months ) with dementia .
My nephew ( her son who placed her ) is also getting these texts .
You didn't make your mom old, you did nothing wrong. Sometimes what we think is guilt is more grief. We are grieving the person that once was . So feel the grief as for what it is , not the guilt.