My grandmother is 92 and she has dementia. I’m not sure what stage. She normally lives in Puerto Rico but we recently moved her here because there is no one to take care of her. The plan was my mother and sister were going to take care of her in shifts (I have trouble communicating because my Spanish is very basic) I told them this before they brought her. Now she has been here for 3 weeks and I am the only one taking care of her. None of my siblings want to do it (except the oldest but she has a daughter and can only give so much time) my mother works and sleeps when she gets home and my youngest sister refuses. It has been very hard on me. My grandma wakes up through the night to put on clothes or clean or she doesn’t sleep at all and wanders. My sleep is completely non existent. Recently I’ve been in such deep sleep I haven’t heard her get up. She has had two accidents. She did number two everywhere in my bathroom and she has peed on my carpet. Now I am afraid to sleep and am constantly vigilant. I don’t know what to do anymore. My family REFUSES to put her in assisted living and I understand but I am the only one pulling the weight. On top of that I run my household while my mom is at work or sleeping so I have to clean and feed everyone.
Please hear me out. I was you. I was the primary caregiver for my mother. I burned out. You cannot continue to do this on your own. Deep down I imagine that you know this, just like I did. I was in total denial that I could do it all. I was completely miserable.
I love my mom dearly. It wrecked my relationship with my mom being her full time caregiver. I was no longer her daughter. I was her caregiver. It causes all kinds of family friction. It’s complicated. I don’t want to focus on that right now. I’d rather focus on you because my caregiver responsibilities are over.
First off, you are 20! I am in my sixties. You are far too young to be doing this.
Of course you and your family love your grandma. I completely understand that. I realize that you have the best of intentions helping your grandma.
Of course you are concerned about where you place her. That is where the social worker can help you. Also, do you belong to a church. Speak to the pastor about possibly getting volunteers to help. Also ask if he knows of any facilities that would be a good fit for her.
Please do not put this off. This planning takes time and I want you to get started right away by telling your mom that she has to make other arrangements for grandma.
You can help her do some of the footwork if that will make you feel better. Google nursing homes. They accept Medicaid. Assisted living facilities do not accept Medicaid. You can contact a social worker and ask her to email documents explaining the process of getting grandma placed and so on. Call and schedule tours for facilities.
Do you know how long I cared for my mom in my home? Nearly 15 years. What if your grandma lives to be 100? Then what? You are 20. These are your building years. You have your future to think about.
You are important. Yes, grandma is important. Your entire family is important but you are just as important. Do you understand that? I ask because sadly I did not understand that. I sacrificed everything for my mom. It wasn’t the best solution.
I felt like it was my ‘duty’ to care for mom and correct me if I am wrong but I get the impression that you feel a responsibility to your mother and grandma. Place your energy into arranging for someone else to care for her. Oh how I wish I had listened to those who tried to tell me that I was burning out. I felt like a failure.
You are not failing mom or grandma by getting outside help. You are helping her. I wasn’t ready to hear what I needed to hear from others. They had valuable experience. I thought I knew best. Guess what? I didn’t. I am not saying that I know everything. Of course I don’t but there are other people on this forum that are compassionate and very wise. Ask them your questions. Tell them your concerns. Then consider their advice.
I know everyone makes their own mistakes. I certainly made mine. Now I would like to help others avoid the pitfalls that I fell into. We can learn from our errors in judgment.
I am really not trying to be overly bossy. I hope you know that. Sometimes it’s hard to convey properly in texts. There are no tones in voices or facial expressions. Things can easily be misunderstood.
Let us know how you are doing. We care.
- in order to be your gramma's legal medical and financial advocate, she would have needed to assign someone Power of Attorney. If no one has PoA for her, no one will ultimately be able to control what happens to her as the county may need to pursue legal guardianship over her in order to manage decisions for her. Depending on what state you all live in, someone in your family (not you!) will need to pursue guardianship over her (and/or conservatorship depending on the state). To get her into a care facility, someone will need to have guardianship (family or the county). If the county has it, family will have no say in where she goes. Getting guardianship is a legal process that requires time and money.
- Giving control over to the county starts by you or someone in your family contacting the county social services and telling them her situation. They will come in and perform an assessment and she may be able to get temporary, limited in-home services. Again, those services can be different in every state. They will eventually find a facility for her and no guarantee it will be close to where your family lives. They put my stepFIL in one 1.5 hrs away.
- what is your gramma's financial state? If she has little or no money, she will need to apply for Medicaid in order to get into/pay for a facility. Her guardian is the only entity who can do this.
I hope you are not paying for any of your gramma's care? Please don't -- you are robbing your own future if you do. It is absolutely not your responsibility. Neither is the caregiving.
Are you living in someone else's house? If so, do move out so that the caregiving cannot be forced upon you.
Doing this does not mean you don't love your gramma. Everyone in this forum can attest to the fact that what you are doing is just not sustainable and you are too young. I realize your other family members are just as pressed and stressed by life's demands, but everyone needs to give up the "old world" notion of family caregiving. It doesn't translate into the 21st century. Blessings and may you have peace in your heart over all this.
Who is her primary doctor? Social workers have given me lots of good information when I cared for my mom.
Call her doctor or even a local hospital and ask for the name of a social worker that deals with the elderly.
Call Council on Aging too. There is usually a waiting list to receive help. They will bathe grandma, prepare food and do light housekeeping. They usually stay in four hour shifts so you can take a break. Please take advantage of this if you can receive help before placing grandma in a facility.
A social worker can tell you the steps to take to have grandma placed somewhere. This is not your responsibility. You have been asked to do too much. This is not a ‘one person’ job.
Speak to your mom and tell her that you are no longer going to accept this way of life for you or your grandma. She needs someone that can speak to her in Spanish.
If you don’t mind me asking, how old are you? Are you working outside of your home? Do you go to school? You need to think of your future, not grandma’s future. I would never have expected my daughters to care for my mom.
Please let us know how you are. You have taken the first step in reaching out. You have expressed distress in this situation which is completely natural. You have no reason to feel guilty so don’t let anyone tell you that you should feel badly about not being able to care for grandma.
Do not put off making a plan to find care for grandma because if not you will burn out. This will not get any better. It will get worse. Others who have cared for those with dementia can help you further. Please listen to them.
I wish you and your family the very best. Many, many hugs for you! Take care.
You have entered into a “devil’s bargain”, and there are only limited solutions available to you, and you will lose family no matter what you do.
WHAT do you “understand” about your family’s refusal to put your grandmother into AL? Do you understand that they have solved THAT PROBLEM by making the burden of it entirely yours?
You will need to assert your rights immediately to get out from under this, because NO ONE ELSE is going to step up, and by now, you need to know that.
For your health, for your LIFE, it’s time to tell them that their plan to cheerfully accept responsibility for this poor woman and dump it on you IS NOT WORKING.
Research your options for a good local AL. Does anyone in this (mess) have LEGAL AUTHORITY AND RESPONSIBILITY to care for your grandmother? Pass the information you find out on to whoever will be paying her bills.
If this development distresses Loving Family, you will have a choice of either walking away from them, including Grandma, OR - spending your life, 24/7/365, caring for her until her care needs are ended.
Under the circumstances, I wouldn’t let yourself be too upset if you did find yourself losing some of these untrustworthy relatives. YOU are obviously someone who can be trusted and relied upon, and you can be the judge if ANYONE ELSE in your family can say the same.
BE GOOD TO YOURSELF, if you can, and when you communicate with the others, Bear in mind that YOU ARE IN THE RIGHT.