Need Some Advice(3)

CarolineJ

Hello. My name is Caroline and I'm 21. This is my first time posting/ using this message forum. I am desperate for some advice. 

I currently live with my grandfather (who has Dementia) and my mother. My grandfathers Dementia is getting really bad and hard for my mom and I to handle.  For example: He is constantly paranoid. He thinks people are going to steal his money (including my mom and I). He has tantrums and has become violent. He tries to escape our neighborhood. And he is verbally abusive towards my mom and I. 

Despite all these problems, I can't convince my mother to put him in memory care. She constantly gives me excuses. I spend most of my time with him while she works. I've switched all my University classes to online so I can help her out with him. 

What should I do to convince her? or Is it not my place to tell her what to do? 

Quilting brings calm

Caroline… when you were a child did your mom let you suffer the consequences  of your own actions? Such as, you didn’t clean your room. So you couldn’t go to the movies or whatever?  

Your Mom needs to suffer the consequences of  not putting your grandfather in a proper care situation.  She’s not doing that because she has you to pick up whatever she can’t do. 

Put your classes back on in person learning, move on campus.  Get a job. Tell her to hire a caregiver or find an adult day care center for when she works.  As long as she can depend on you to be at home, then it becomes your problem. 

You could lose your entire 20s to caring for your grandfather.  Putting you behind for jobs. Advancement in careers and savings for retirement. Marriage and a family.  Do not let that happen. 

David J

I couldn’t say it better than Quilting did. Having lost my 50s and now my 60s to caregiving, I know it takes chunks of your life while you’re not looking. I know you love your mother and your grandfather, but you are not responsible for solving the whole family’s problems. Imagine that you spend the next ten years caring for your grandfather and supporting your mother. Then in 20 or 30 years your mother needs help. How will you feel?  It may seem insensitive, but your grandfather is your mother’s problem. Help, if you can, but please don’t make it the focus of your life.  My opinion.

Cynbar

I totally agree with the other posters. Your grandfather is your mother's responsibility, not yours. If she doesn't want to put him in memory care, she needs to hire someone or arrange for day care. As long as you are doing the "heavy lifting," she has no reason to make any changes. Dementia is a progressive disease, medication may help some but it's not going to get better. This is so unfair to you. Your 20s are the time when you set the course for the rest of your life --- you get an education, start a career, socialize, maybe meet someone special and start a family, just in general get a focus on who you are and are going to be. You can't do that if you are stuck at home, taking online course, babysitting for a person with dementia. The pandemic is over, you need to get out there and make a life for yourself. My advice is to give her a deadline to make another plan for your granddad, and then stick to it. Good luck --- it can be done.

towhee

Hi Caroline, welcome to the forum. People often say, caring for someone with dementia is marathon, not a sprint. Caregivers have to be realistic in their ability to care or they burn out and do no one any good. As a caregiver for your grandfather you have every right to set limits, including saying you just can not do this anymore. But in order to keep a good relationship with your mother and agree on what is possible and, best for everyone, it might be helpful to clarify the situation. It is usually better to convince someone when you are sure of your ground.

I am going to review some facts and challenges of placement.

When do you place-- care needs drive the decision making. That means that when your loved one has needs you cannot meet, whether it is the safety of the physical space, you are too tired, you cannot meet physical care needs, or handle behaviors, it is time to place. Placement does not mean you stop caring. Getting a doctor to prescribe medications for behavior and using day care can help caregivers cope and delay placement. 

Legal Barriers--Persons with dementia past the early stages are often very reluctant to move.  In order to place them in memory care you need a Durable Power of Attorney and sometimes a Health Care Power of Attorney. If the PWD has not or will not or no longer can legally give these legal powers than you have apply for guardianship. Guardianship is expensive, time consuming, and the persons capacity has to be diminished to a certain legal standard. If a PWD has given a DPOA but has not later on been declared incompetent, and they are capable of calling a lawyer it is possible for them to revoke that DPOA. Then you have to go for guardianship.

Financial--The cheapest memory care is about five thousand a month now, many are more expensive. Given the length of time many PWD live a substantial number of people do not have the resources for this. They must rely on medicaid. BUT, some states do not have medicaid coverage for assisted living and memory care, only skilled care. Those that do cover them have specific rules about income and asset limits. They also have a five year lookback period where if money or property has been given away,  they can deny coverage. Medicaid rules are complicated.

towhee

Placement continued-

Time--It takes time to find all the information you need about the financial and legal aspects of placement. Some of the people you might need to talk to only work 9-5. You need to research, contact, and tour memory cares if possible. You need to talk to the PWDs doctor to discuss what level of care the PWD needs. When you are already barely able to cope with your current day to day schedule adding this can seem impossible.

Emotional--For some people placement is the hardest part of dementia. Your parent cared for you, you feel that you should care for them. With placement may come the realization that yes your parent is getting worse and that they are progressing on the path to death. You might fear that your parent will be unhappy and blame you and that your parent will not get good care. And they might not have any idea of how to get their parent thru the door of AL/MC.

So how do you help your mother come to a decision? Find out if there are any legal or financial barriers and help her deal with them. Tell her of the options of medication, day care, and help coming into the home so that she feels she has done everything she can. Tell her that placement does not mean that she will not be involved in care. Ask her to think about every ones' safety. Take a good look at what you can and cannot do and for how long, and communicate that to her. 

Good luck

The4thOne

Hi Caroline,  You have read some advice that may sound harsh in terms of leaving this to your mother.  I know you 'just can't do that to her'.  It's not doing it to her.  It is not ideal, but you have to claim and reclaim your life.  As others have said, you are young, there is more in front of you.  And Grandpa is not going to get better.  That is an undeniable truth.  You have not done anything wrong, so don't lock yourself in prison.  Mom is trying Love Management and Guilt Ownership.  She will only consider the alternatives when she can't handle it anymore.  And that day is coming, so you need to get out of the way so that she can see it when it arrives.  I know this sounds hard, but you are now 21 and an adult.  But being an adult is a legal statement.  Decisions like this is what makes you 'grown'.  This is the kind of stuff that grown folks have to do.  

Try to get Mom to read these posts, and if she refuses, print some of the more relevant ones out and place them on her bed, where she has to read them.  You may not be able to say it, but believe me you will find someone here has said what Mom needs to hear.  Praying for you and Mom and Grand Pa, and keep coming here for support and advice.  There's a lot of love and understanding here.

Amymv

I agree with the others, Caroline.  You need to get back to classes on campus and have a social life.  I am not sure what your financial situation is, but if you cannot afford campus housing, just attending classes, joining clubs, and being with friends during the day will be good for you. 

Do you have any aunts, uncles, or cousins who might be able to help out until your mom can find paid cared givers or get your grandpa in a facility?  Might you be able to lovingly suggest to your mom that this is a crisis waiting to happen? 

You were very wise to come here and I hope you feel stronger now,  Please check back again.  You are facing challenges, but you are seeking help and answers! That is very healthy!