How do you deal with the silence and not talking much?

Karn, my heart goes out to you, but you should not be doing this. You Grandma's children need to take on responsiblity to have her placed in care and you need to get on with education (if not done) with job, with your own place and your own life. I would encourage you to consider "giving notice" and doing this. I recognize that doing this may give you a place to stay and enough money to stay alive and have a place to live with food provided, and I recognize how crazy scary it will get to leave what you know and get out there in the world we enter when you are grown, but it is time to consider doing just that so you don't sacrifice your entire 20s, that time when you get out there on your own, get a friends and a life, and begin to mature. I surely do wish you the very best.
I guess some of would say it is "good luck" to have a grandma who is content with quiet as opposed to the difficulties that hit many elder with Lewy's (tho it leaves YOU with no real communication at all).
My brother had a probably early Lewy's Dementia diagnosis, and he died before it could get bad of another cause. To be frank, I think he was lucky; it was what he wanted; he knew what he had and feared where it would take him.
Good luck and best wishes out to you.

Carry on conversations with grandma just as you normally would.
My Husband was pretty much non-verbal the last 5 years or so of his life. he made noises but never spoke. (He did say "ouch" once when he hurt his hand)
Can you get involved with some things that you can do from home?
Tutoring
There are online support groups.
The senior center near me has a program where they have people call Seniors to check in on them, make sure they are ok and just have a chat to keep them company.
Any of these might keep you busy, have an outlet for yourself.
It is difficult. I do hope you have more help than just weekends.

How dreadful it is that your grandmother's children left YOU with this burden to care for her, with such a terrible dementia diagnosis, all on your own, w/o any help and with no escape.

Like AlvaDeer said, I'd give your Aunt your 2 week notice IMMEDIATELY and get out of this situation at once. Not for lack of love for your grandmother, but for sheer burnout and the absurdity of being left in such a situation in the first place. 6 years is 5 years and 11 months too long that you've had this job with no pay and no benefits, so it's time you strike out on your own and find a job that you're paid to do. It's your turn now to develop a social life, find friends and start dating!

Wishing you the best of luck moving out and on with your own life now. You deserve to.

Karn, how did you end up in such a hopeless situation?

Don't you think your grandmother deserves more socialization and more professional medical care than you alone can give?

Have you had a recent assessment of your mental health?

Who holds power of attorney for health and finances for your grandmother?

This is such a difficult situation because
1. no one else offers help care for your grandma - they just leave it to you
2. you fell burdened that no one else cares as you do about her
What you need now is HELP - you should not be doing this alone - there are people out there in your community who will understand. Dementia is a dreadful illness - you as the carer watch and grieve as the person you love dies by micro-inches in front of your eyes- and the helplessness that that brings to YOU wipes out your hopeful, sunny sides of your thinking - you get depressed and need time out.
Big Hugs
Kath

I have seen so many men destroyed by "family obligations" like this. No one took a lien on your life. It is on your mother and all these aunts to deal with her.

You have zero friends and probably no girlfriends because, trust me, no one in your age category is going to accept a Tinder date with you knowing that there will be a old lady there. In addition, starting this year, you have to pay for your own medical insurance, no more Obamacare on behalf of mommy. Let it be on the aunts and mom to figure out what to do with her.

Hi Karn I'm going through similar circumstances. Ok im from the UK. You need to contact a social worker / case worker & tell them you need help & you have carers burn out. They should help you with carers & respite. In UK we have what's called Carers trust & they deal with helping people like yourself to meet people who are in same position & a sitting service. People to sit with your loved one while you can go out for a couple of hours. Look online to get phone numbers. I would start with your Dr first as they might direct you in the right direction. I know how you feel. Best of luck & sending you a hug as you are doing a great job.
🙂

I have been in your boat--somewhat. I was about 20 years older than you are, and dealing with my mom wth Alzheimer's. Since I'm an only child, it was up to me. (My husband helped too.) I tried to find humor and heart in the situation, for my own sanity. We juggled work schedules, so someone was always with her. (I taught night-time classes at a local college, and he worked during the day.) I commend you for taking care of your grandmother, but I know it must be a frustrating situation for everyone. Could you get a volunteer (hopefully vaccinated and masked, due to Covid concerns), to sit with your grandma for a few hours here or there? You might want to look at www.alz.org, (the Alzheimer's Association) and see if they have any suggestions. You could also contact your local Area on Aging and maybe a local house of worship, to see if they have any volunteers willing to visit, to give you some respite. Is Assisted Living or Memory Care an option for your grandma? Best of luck.

Get home health care.to help clean make meals bathe.clean house.you can't do it all.Tell the to family you need help or put her in a assisted living home.

Yeah, find caregiver help…it’s out there, start looking…call your local Alz assoc and they will help steer you. After help is secured, then start getting your life back. Start working, even part time, get yourself out in the world again. Then speak with your family. I bet most of them of blissfully unaware of what you’ve be going thru. If they won’t step up at that point, then yes, go, move out, take care of your own life and never look back. Sounds cruel, but it isn’t. Grandmas life was over long ago, yours is just beginning. There is not one reason on earth that only one grandchild be saddled with this.

And to Rose87….this young man took on the responsibility your BF is looking at…do you want to end up like this in a couple yrs? Isolated, desperate? A cautionary tale to be sure.

You will be blessed for loving your grandmother so.

Do you have any interest in reconnecting with old friends? You may have to reach out maybe through social media first. It is important for you to get out and have some time for yourself. Focus on a hobby? Take a class to meet some people?

The advice below is great about getting even part time support in a caregiver. Post on facebook and go from there. I needed a part time caregiver for my mom and 2 people my family already knew responded to help. Not everyone knows what you are dealing with unless you share.

Forget about the family that are not interested. If they were you would have seen them by now. Every family has givers and takers.

My husband and I care for my mom(85)and his aunt(93). Both with different levels of dementia. Some family help a small bit but we are the primary worker bees. We would not survive without our caregivers. Both ladies are still in their homes.

You are so young to be tied down so much with this responsibility.

Karn2020, speak to the person who has Power of Attorney or whoever should be in charge. 

Politely let them know you will be moving on with your life, therefore, they will need to take over. 

Give the POA a set time when you are ready to go. 

Let the POA know that if they do not take over, then you will contact the Department on Aging in your state to get the help needed to enhance your grandmother’s quality of life by connecting her with services that will help take care of her.

First of all, you are to be commended on your dedication to your grandmother's care--she is very lucky to have you near.
To keep this relatively short, I recommend the following:
1) find a support group, either in person or online or some combination--given the Covid surge conditions right now, online is safest. I am in a small support group for dementia caregivers (peer-led so it is free) and it is a lifesaver, truly.
2) Find a therapist to help you with issues you're having making or keeping friends and/or figuring out how to stay strong and have some boundaries around the care you are giving so that you have a life for yourself (as it seems you did until a few years ago, probably, I am guessing, when the pandemic happened). You sound like a stellar individual, caring and kind.
3) Mindful practice: I recommend Sharon Salzberg--look her up online--she's wonderful and her programs are free or very inexpensive depending on your means.
4)Use this group to ask any questions you might have--the community is generous and knowledgeable!

Karn why do you stay ? Are you getting paid a salary ? I would start there . Who is Power of attorney ? There is no way you can do it all . I would suggest a social worker for you and if Possible a psychiatrist . Contact elder services or have the social worker help you . See if you can get someone to clean and bathe her . Too bad if she doesn't Like paying for it . Why are you stuck doing all this work ? 6 years is a long time and I know because I have been doing it for 6 years . Do you have a separate living space for privacy ? Your giving up the best years of your Life . Your 20's is suppose to be fun and adventurous . You need to be compensated . Most people Make $25 a hour . Your definitely being taken advantage of by her children . Who Put you in this Position and dumped you with this responsibility . I would hand them their parent Back and get on with your Life .

Most times in life you have to "make happen" what you want. What you want is a fuller, active life. If you weren't there doing what you're doing, someone else would have to step in. Period. How do you make that happen? - speak up and let others hear your voice. The way your aunt moved out during the week, you must do the same. I do understand that you can't physically move out yet - but you can prepare the family by telling them you need more help and more time to look for a new job, join a gym, take some courses - whatever your dreams are. It is a normal, valid and very basic thing that you are asking for - DO IT!
Your grandmother once had and aide but balked at the cost - no surprise there! Most elderly people can't fathom their hard earned money going to a stranger, nor do they understand/accept what the wages are today. However, I am hearing that the money IS there, she just doesn't want to part with it - and she's thinking why should she when she has you living there? (a little sidebar-I took care of my mom but hired a part time local aide at $20. an hour. I told Mom she had to pay but even when I told her the rate was $10 an hour, she thought it was too high! And she loved the woman! lol).
It's time to talk to your aunt and say that Gram needs part-time outside help now because you need to take steps to get a job and move on with your life. THIS IS YOUR RIGHT. If your Aunt is POA she can hire and pay the aide out of Grams money just as she pays everything else. Gram doesn't need to know the cost - a white lie will go a long way here. If that's not acceptable, Grams children should share that cost.
Last - it's clear you are a kind, loving and caring person who may have become introverted due to the hard life you have had. Nonetheless, you are a valuable person who surely has a lot to offer in this world. Consider taking a nursing course, a very lucrative job that will open up many doors for you. If that's not your interest, please take steps to live your dream - whatever they are. You sound like a very intelligent person with a lot of insight - you just need that confidence and belief in yourself to make it happen. You owe it to yourself.
On another note, while you are living there and helping out, to quell the silence - here are some things I suggest. Talk to your grandmother, even if she doesn't or cannot answer. Talk about current news, how much you love her, and your dreams. Keep the rooms bright and cheery. PLAY MUSIC. The elderly LOVE hearing music from their era, and play some of your own. Exercise. Learn to cook. Take some online courses in whatever interests you, join a MeetUp group - stay active!
This is my last suggestion which may be the hardest one: if no one reaches out to you - reach out to them! Call them up just to say "hi". It may be awkward at first but it will get easier. Explain you and Grams would love some company from time to time. Invite them over for lunch, one by one. Even if just one of those people reciprocates, your loneliness will be a bit less. You are on your journey to a better life and you CAN do it. One step at a time.
PLEASE stay on this site and keep us updated. We care!

I echo NYCmama' comments. My only added suggestions
1) Show Grandma pictures from Facebook, family albums, etc. that will start a conversation
2) Watch an old tv show that she can relate to, Match Game, Hollywood Squares, Golden Girls, etc. These might also provide some conversation.
Best wishes and God Bless You.😇

KArn--

My heart aches for you. You're in the prime of your life and should be living as such!
While your caregiving for gma is admirable--it's time to walk away. I think your family is abusing you, with your permission.

Before you leave, do set up alternate care and if gma doesn't 'like it'--well, she's joining a huge group of elders who don't wnat/like their CG's. Sadly, this is part of life. Gma is robbing you of your youth and that is patently unfair. Your family knows it too and as long as you quietly acquiesce to unspoken demands, nobody is going to step up and step in.

Your question is about keeping gma mentally stimulated, annd in truth, that's pretty hard to do. If she cannot find something on TV that meets her interest, maybe games or puzzles. My mom can do puzzles for hours on end.

If what you really want and need is an independent life--then it's up to YOU to make the moves.

New year...new you!

Your grandmother may not "want" to pay for outside help, but you do not need to trade your life for her convenience
She does not get to have things the way she might like at such a great emotional cost to you (or to any other family member.) Whoever has POA should arrange for either paid help at home or placement in a care facility. You are not obligated to accommodate her selfishness.

Very good advice here at this site, as you must realize by asking in the first place.

I would like to address your financial and legal aspects of your relationship with your Grandmother. Do you have POA for health issues and financials? Do you write the checks for electricity and taxes? Not from your money, from her money? If you do, please get these things registered with a lawyer's help. If no one in the family will help you, no one but you should benefit when Grandmother is finally released to God's good care.

I say say this from the experience of my husband's cousin. He gave his life for their grandma, he was an old man himself by the time she passed at age 103. The children, the aunts, the cousins all got a share of everything equally, which meant he had barely anything, not even a house to live in. If they do not wish to help, they cannot benefit from the end result.

So do this now, don't ask anyone, just go ahead and make the arrangements. Put your name on her checkbook at the bank, and secure all financial benefits in your name. You don't need to ask them, you are her full-time caregiver, her doctor can give you a letter explaining her situation, and perhaps yours also. The bank should honor that letter and do as you ask. They can also be a real help to you in securing what you need. This is not just for you alone, but for her. She needs you, as you seem to be the only one willing.

The advice to get help in to give you a few hours to yourself now and then is more than correct. It took me ages before I would allow anyone else to watch over my husband. What a relief and I was glad to see him every time I got back, if only from a few hours gone.

Best of luck to you, you are an unusual young man, don't ever forget that. You have done a Herculean job already and later you will be glad you did what you could. Even if you find you cannot do anything but leave, then go with a happy heart knowing you loved and helped your grandma. And in that situation, not being able to stay, go..... and go soon. 27 is too young to throw your life away for an ungrateful family. ((((((Hugs))))))

Mom used to be very social. As her dementia progressed she became less interested or aware of her surrounding. The one thing she did was spend hours sorting through her mail and writing cards out to her parents
We could spend hours not talking. There are groups called senior companions. They can come in for a few hours so you can get a break. Check with senior linkage line about what is available. Americorp may also have programs. Covid has changed a lot of things. I do know that when your loved one dies, you will be at peace knowing you were there for her.

Karn From what I read here, It sounds like your family dysfunction left you taking care of yourself long before you should have been expected to do it. Don't rush into any big life changes. Ease into it. I'm wondering if this situation gave you a place to stay and also provided grandma with a caregiver. If so, nothing wrong with that, but you haven't had much life experience apart from all of the family dysfunction.
One thing I realized a long time ago, is that people don't even realize that the role of a caregiver is REALLY, REALLY hard. It just does not dawn on some people that it can be so difficult, until they have been in that position themselves. Those of us here, know how hard it is.
You haven't stated if you are getting paid, or not. You should be. A lot of people are not aware that you can get paid for what you are doing, even if the person is on Medicaid or might someday be transitioned over to Medicaid. Grandma can't take the money with her, but is there a possibility that the POA does not want the money to be used? After all, less money spent on her care, leaves more for the beneficiaries. Not accusing anyone of this, it's just a fact. My sister and I take turns caring for our mother. We get paid for it, but have to keep good records in case she ever has to transition to Medicaid.
Whatever you choose to do, make thoughtful decisions. Ease into changes, it's too easy to jump in before you are ready, but DO reach out and let the other family members know you are overwhelmed and this isn't working anymore.

Have you looked into adult daycare? They take people with dementia and it can give you a break at least during the day. You can set up fixed days per week. Many of them provide transportation services especially since many of their clients are in wheelchairs. You can then possibly take a class in something that interests you and meet people. They may not be your age but it can lead you to other places where you can meet people your age. It is a good thing you are doing. I am sorry no one else pitches in.

You are a sweet and compassionate young man. And you love your Gma very much. Sadly, as this disease progresses the brain will shut down normal functions. The ability to speak, to remember, to chew, daily functions. It's sort of like an upended file cabinet of memories for our loved ones. But, for you, ...you need human contact. I can only give suggestions that might help. I'm quite happy by nature with a small group of close friends. But the isolation can become depressing and cause anxiety. Getting out for a bit is a good plan. You are doing an outstanding job. Perhaps if you joined a group exercise class at a recreational center you could show up 10 minutes early. And you'll find the instructor or others will eventually strike up a conversation. That mentally is very uplifting. And might lead to a friendship. If you are church minded, a choir group. They all love to chat before singing. And you'll love taking your mind off things. Or guitar lessons at a guitar center. You'll know your interest. Just eating lunch at a bar top and chatting with the server is a means of human contact. A dog park. Whether you have a dog or not. People will chat. And you'll enjoy a moment of peace. You are a good spirit. And God has a plan. Good job young man.

At your age, you SHOULD NOT BE THE CARETAKER and especially since the others in the family will not help. And the bad news is - THEY WON'T HELP YOU NO MATTER WHAT. And people stop visiting and talking to most people with disabilities with few exceptions - it is sad but true. In your case YOU NEED TO LIVE YOUR LIFE AS YOU SHOULD WHILE YOU CAN. Speak with an eldercare attorney to legally be able to take over decisions and arrange to move her to a facility. You have no other choice.

What city and state are you in? If local, I would be willing to give some respite care. You need time & space to live YOUR life.

In my area I was able to get some weekly respite care paid for by the state. They also paid for me to receive counseling as a caregiver and would pay for a certain amount of supplies each year (such as money to get a camera for my dads room to monitor him) They also offered educational materials and classes for those coping with caring for an elderly person. Perhaps some support like this is available to you and would be helpful. Also if your grandma has declined this much she may now qualify for hospice care which is enormously helpful. Her doctor can help you with that.

I see you.. I feel your struggle.. I am in the same struggle generally however I have support from my mother and siblings!
it is still the hardest thing..

OMG! You are a loving grandson, but this situation is totally out of balance. I concur with the many good suggestions offered here, and the observations that THIS is NOT how you should be spending this time in your life.

First of all, you must take care of YOU. Good for you for recognizing that the situation isn't good for your mental, physical, social health or employment prospects. Connect with a therapist or a support group (many are online these days) Look for one @ www.ALZ.org

Speak with grama's doctor. Hospice is a good idea - it will get someone into the home, to assess grandma's living situation, provide you with options and resources, AND it will be so affirming for YOU just to have someone witness what you are dealing with. That alone will reduce your sense of isolation.

Yes, you can get paid for being her caregiver. Depends on what state you live in. In NYS, see Consumer Directed Personal Assistance Program (CDPAP) (ny.gov) A Social Worker or the Alzheimer's Association can help with this.

Get it documented that YOU have been living there and providing care for grandma. A lawyer can help with this. And if she owns the house - there may be provisions for you to be compensated when the house is sold.

Even if you get paid to care for gram, find a way to GET OUT OF THE HOUSE EVERYDAY - walks, a PT job, a hobby.

Don't wait for others to step up - likely they won't. Continue to write to this forum - to let us know how you are doing.

Karn2022: Imho, this dynamic must change. You can no longer carry on in this sole caregiver role.

OMG ! You are so young and deserve “ a life” ! Shame on all of them!! You need help or to have grandma placed. Contact her “ children” for a MEETING and tell them you are DONE and they need to STEP UP. If they don’t help…. Have her doctor help you get her placed ASAP and live your life. NO ONE can do this alone and you have certainly earned all of OUR respect . God Bless you 💜