My sister has a myriad of issues. She is a recovered alcoholic with spending issues and 2 bankruptcies. She had a stroke 2 years ago and struggles with short term memory issues and aphasia. She was living with my mom and she and I were caring for her but after the stroke it became very difficult for her so I stepped in more. My mom passed in April just after the pandemic hit and we had to sell the house due to a reverse mortgage situation. My sister then stayed in the house until just before it sold, moved into public housing and then decided to give assisted living a try. The pandemic has forced them into lock down for 2 months solid and she has been miserable. Couple that with grief for my mom...She wants out but she is not truly happy living with anyone and wants to be on her own despite the act that she has only a small disability payment monthly and most likely could not work due to her stroke. I got her signed up for the Medicaid assisted living waiver and into a lovely facility because I thought it would give her the independence she wanted (not living with a sibling) but still someone to help with medications (she forgets to take them) and other things but now she tells me she does not belong there as she is too young and wants to leave. I would take her in but she generally becomes angry toward me when I don't let her do what she wants (spending money). I am concerned for her driving as she was getting lost prior to moving into the facility. And I am concerned that husband who is retired would have to be home with her all day while i am at work. I want her to stay in the facility as well because she has such bad spending habits that I fear that she would starve because she would not remember to save money for food. My problem is dealing with the my guilt over her situation. I am so sad for her; she loses my mom during a pandemic and then everything in her life changes. It was difficult to even be with her at first due to the pandemic and now I berate myself for not just tossing caution to the wind and just spending more time with her after my mom passed. We couldn't even have a funeral :( Now all her sadness and despair in the facility and I am a total wreck. Anxiety and guilt and sadness have overcome me. I can't seem to put this in a good place. I would appreciate any comments on my handling of this and if you think I am wrong to put her in Assisted Living. Thank you!
The only way to put this guilt into any kind of a "good" place is to realize that your situation is repeated millions of times all over the country. Every one of us here with loved ones in nursing homes are experiencing what you are experiencing, except we've been going through this for the better part of a year now. What has happened with the pandemic is not your fault, or my fault, or the fault with anyone with loved ones in nursing homes. It simply is what it is, and like any other difficult situation, you buck up and move on. It doesn't mean you endanger the health of your loved one by pulling them out of a place where they're getting the care they need.
understand that hearing the truth hurts. But again, if you have never actually lived in one of these places , you have no idea what really goes on when you’re not to there. The place where I am currently has three lawsuits against them for wrongful death, abuse, and neglect. The landscaping and decor are beautiful, and if you take a tour, you would be impressed with the larger rooms in AL and the white tablecloths and the friendliness of the people taking you around. The model room is beautifully decorated, and the “Activity Sheet” for the day seems to have lots of things for the residents to do. In reality, those activities are boring, repetitive, not at the individual ability and preference level that the state regulations require, and some of them are cancelled at the last minute when no one shows up. Most residents (before the Pandemic) just choose to sit in their room and watch tv all day. The food is cold, burned, tough as shoe leather, and at least than 1.000 calories a day ( I have a food scale and measuring cups), it’s at deprivation level. Frequently the people who are supposed to give showers and help with dressing don’t show up. Showers are typically only twice a week anyway, so how do you think we smell?
The Ombudsman is a joke. They are more like a mediator. And they will tell you they have to have pictures or written proof of what is going on to actually do anything about anyone’s accusations. So there is no accountability.
I have lived in three of these places and researched 20 others. My husband died here due to the negligence. I have long term health insurance that pays very generously as long as I live in one of these places. That’s the catch. I don’t want to be a burden on my children, so I put up with it since I don’t have dementia and can still drive. A local newspaper reporter ran a huge expose for several months that I wish you all could read. She exposed everything I’m talking about all over the state, and at least some new legislation was passed that takes effect this summer as a result of her research. I and many other residents and their families gave her much of the information. I have every right to “bash a facility “. It’s called free speech and telling the truth. Some of you out there believe you are doing the right thing by putting your loved one in a place like this. And if you are comfortable with that decision, that’s your right. Thank God I’m not your parent. I have a wonderful relationship with my children and grandchildren, and they know how bad these places can be. I also have a wonderful relationship with the other residents here. And they frequently come to me for help and to tell me how they are treated. The ones who have a private sitter 24/7 are the lucky ones. Their families get it.
As I said, these places didn’t exist until the late 1980’s. Families took care of their own, as they do in many European countries today. Maybe the small homes with only a handful of residents are better. But I have also caught a lot of abuse to my husband on camera by private sitters. My husband couldn’t tell me, but the camera sure did. Maybe you didn’t see the expose on the nursing home where a woman in her 90’s had her diaper removed and was raped in the middle of the night by a CNA. The family had placed a hidden camera in the room.
So please, don’t criticize me for trying to alert people about what can actually happen when you don’t know what really goes on. And by the way, A Place For Mom and all the other businesses that “help you find a place for your loved one” get commissions from the facilities. They don’t know the information about these places except for the geographical location and other logistics.
Yes many families took care of their own (pre 1980's). Mine did going back further. The facts are now that women work out of home for a wage they cannot also be caregivers (unpaid) in-home 24/7. Families were bigger too. Maybe 6 adult kids living local to aging parent. Now 3 spread all over the country. That system broke. I agree a better system is needed.
Therefore I KNOW assisted living is her best option.
Maybe it would help you to discuss your sister's function level with an OT or other professional or even the AL Manager? To gain insight into her daily needs?
If you still feel making her happy is the top priority & fixing everything for her is your job, I'd suggest some councelling to discuss it all. Some counselling may really benedit your sister too - for grief & life stage adjustment. It really helped me get to where I am now. Which is no longer drowning under her needs & actually starting to swim towards my own goals. Happy for you to private message me.
It is fine for your sister to have a goal to leave her ALF & live alone. If she is serious about this, she will need to obtain a case manager or social worker to work out what choices are available to her;
1. What is REALISTIC for her level of function.
2.What is AVAILABLE to her.
3. What is AFFORDABLE for her.
What she *wants* may differ to what she *needs*.
Stroke is a brain injury, damage & recovery varies significantly. Some will have reduced or lack of insight regarding their care needs.
My sister (stroke survivor) is childlike in her thinking. *Wants* to live alone too. Cannot manage finances, bills, makes poor food choices. On Katz Index of Independence scores 2 to 2.5 (2 is severe functional impairment). The only way for her to live alone is with daily aides & daily care management. The burden on family is extreme. It is NOT living independantly. It is actually living alone, DEPENDANTLY. I do not recommend this setup at all. Neither does her health professionals - every professional has recommended AL (but sister also thinks she is too young). Her Doctor told me to step back out of her housing situation. Don't get caught up enabling her. Let the chips fall, as they say.
Sometimes we have been shaped by our families to be the problem fixer. It can get in the way of other solutions.
As a responsible grandma, I have to keep him safe, and take appropriate measures.
You are keeping your sister fed, and making sure that she takes her medicines. In this case, being safe trumps “happy”.
Your sister clearly cannot live alone. She can manage neither her finances nor food. Those are two huge things that someone else must manage for her if she is to continue living anything resembling a life. Her alcoholism probably contributed to her current health and her current situation. It's not your fault. Those were her choices, not yours.
In my opinion, it is a bad idea for anyone to take responsibility for caregiving without the authority. If your sister will not give you durable power of attorney both medical and financial, then step back, let the state take over making decisions for her, and be her loving sister who calls and visits.
"...she generally becomes angry toward me when I don't let her do what she wants..." That, in my opinion, is the clearest sign that your sister's problems are bigger than you solve. Do not risk your marriage for anyone.
Get rid of that guilt. It is not your fault she is where she is in life. Your help has probably bettered it. She should appreciate your States Medicaid allows for ALs, not all do. I personally would not take her into my home. You may need to be blunt "Sorry, you cannot be on your own you need others to help and its not me" Maybe the Nurse who evaluated her can tell her she is where she needs to be.
You also need to realize that she may never be happy. That it is not your job to try and make her happy. I would wonder if she has BIPolar or even a depression. Drinking and spending when you don't have it are signs.
(((Hugs))) 2nd Assisted Living YES, 3rd lose the guilt, 4th you have done a great job! 5th take some time for yourself too!
If she was in Independent Living facility, she could drive herself lost, or got in an accident, or killed someone or herself, how would you live with yourself?
Or she would squander every last dime and you had to buy her food week after week, month after month for year after year. How angry and stressed would you be then? Wouldn't you resent and even hate her?
If she moved in with you, she would ruin your husband's life and your life, and your marriage. You would regret it and wish you had never moved your sister in. Not only that, it would be 100 times harder to move her out once she moved in.
So, you did the right thing. Now, pat yourself on the back for making that wise decision.
As for your problem:
"My problem is dealing with the my guilt over her situation. I am so sad for her; she loses my mom during a pandemic and then everything in her life changes."
You can't fix things that are not within your control. And you are sad over things you can't fix.
Your sister had a stroke, it's not your fault and you can't fix it.
Your sister is sad because of your mother's death, you can't change it. You lost your mother, too. My condolences on your loss.
Your sister's life changed drastically, you could not have prevented that. It would happen sooner or later when your mother passed.
I can understand why you are sad, but I don't understand why you feel guilty. What did you do wrong? Nothing. You made a very wise choice by putting her in Assisted Living. You did the right thing. The alternatives would have been disastrous.
Many people in care facilities are in the same situation as your sister. Sad and lonely because of the quarantine due to the pandemic. You can't change this either, except to call her and talk to her as often as you can without being dragged down into the dump with her as well.
Remember, of all the options you had, you picked the best one for her.
The details and the costs vary between establishments, and many places have several types of care on the same site, so that residents can transfer between them as their needs increase. My understanding is that Assisted Living, Senior Living and Independent Living can have a fair bit of overlap and/or difference between different facilities.
If you think that your sister's spending habits really need to be controlled, you could look up Power of Attorney as well. If you could do a budget with your sister it is possible (crossed fingers) that she could settle on a regular account for regular spending money under her own control, that she knows will be safe for her. Perhaps the balance could go into a 'two to sign' account, if she won't agree to a POA.
I’m sure you will get more personal feedback, but a good understanding of the basics will help you to sort things out. Best wishes, Margaret