How to prepare to be a caregiver for my grandmother who got diagnosed with Dementia at the start of this year? I am 22 years old.

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So you have your work cut out for you.

Contact your local area on aging, anyone know who that is for Ontario, CA? They will help you with all of the local resources available.

Grandma will need financial aid if I understand you correctly, can your aunt tell you what her income monthly is? Any type of assets, ie 401k, IRA, home, land, etc.? Can she tell you how much cash in the bank is available or give you statements from the time she 1st started helping? I ask, you don't need to answer, just follow through with your aunt. Getting aid takes time, so the sooner you start the sooner you will get it.

Search for adult daycare in your area or one that will transport grandma and ask them for financial aid package. She will probably reject the idea, unfortunately, you will have to be the reasoning mind on this journey, do what you must to get her to go. They will give all a break, to much of a good thing, is just that, TO MUCH. So no matter how much we love someone we need time apart. Do not feel guilty about making her do things she doesn't want to. Dementia makes lots of people not want to bath or change their clothes, so that gives you an idea of the brokenness of their brain and will help you get what needs to be done, done.

Establish a routine and stick to it, they are like babies and routine makes them feel safe. Even when they are bucking and snorting you enforce the routine, hopefully, after a time they will settle into the routine. I also think it helps to see a problem or change developing earlier.

Learn how to walk away and not try to correct their thinking, no matter how crazy it seems to you, it is real for her, redirect and comfort fears, never say it's in your head or your only imagining it. You're right, but she's broken and can no longer reason. This was hard for me.

Take one day at a time, sometimes you have to go minute by minute, other days it may be hour by hour.

You are going to be dealing with government bureaucracy and that is going to be the most frustrating part of the situation, do not get mad, your file can go to the bottom of the pile. Be focused on the end result, care for grandma. Be diligent in following through with them, if they say they'll call tomorrow and don't, call them, be sweet and kind and understanding and persistent. You require their help, let them know that and thank them, even when they have jerked you around and you'd rather kick them😋.

Get started now and you will feel like you have some control over the situation.

Hugs for being willing.
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I think that it should be on your mom's back to get the finances and any application for medicaid together for her mother. You have enough to get done with completing a masters and getting employed full time.
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angiesoccer15 Aug 5, 2018
Yes, she is looking into the paperwork and referrals needed.
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Dementia is a journey. People begin that journey with memory problems and some noticeable and testable cognitive decline while remaining legally competent and still able to function alone with some outside support. In the next stage, dementia patients can still function fairly well but need someone around most to all of the time to provide structure and pickup any dropped steps (like loading but not running the dishwasher or using the toilet but not wiping). And then one day your LO is so confused, their damaged thinking so bad, that you realize they need constant supervision to be safe. Many times I think that last stage crepes up on us.

If your grandmother is in either of those first two stages then you and your mother working together should be able to provide her care. You may even establish a deeper relationship with your grandmother, learn more about her life and find it rewarding.

Because dementia is a creping monster disease, the day will come when you and your mother will struggle to take care of your grandmother and keep her safe. When that day comes, please be open to placing her in MC or SN.

Regardless of how rapidly your grandmother's dementia advances, in a few years when your life changes - finished your degree, found a job, started a family - you will need to reduce or walk away from providing your grandmother's care. Place grandmother in a facility and become her advocate. Be proud of the time and care you gave her, but go on to live your life.

Don't let posters push you to placing your grandmother now because you won't be able to meet her needs down the road. At the same time, don't think of this as a "to the death" arrangement. The "as long as we can make it work" arrangement is a lot healthier.
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angiesoccer15 Aug 5, 2018
Thank you for that.I really appreciate your response. I am hoping my mother and I can do this together.


And as you have described, my grandmother is in the first 2 stages.

My mother and I just talked about how we need to be on the same page and be 'okay' with placing her in a home when the time comes.

Thank you again, so much!
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Angie, you say you have experience with terminally I'll people, as your father died of cancer when you were 15. (I am sorry for your loss) Cancer and dementia are not the same thing. Dementia is a disease that takes bits and pieces of someone but leaves them alive, if that's what it can be called. PLEASE DO NOT take this on with the idea that you have been there, you have not. I am not trying to belittle your experience, it just isn't the same.

My grandma lived for 20 years with dementia, she beat up 6 nurses because she thought they stole her teeth, she would pee on the green carpet behind the recliner, she thought she was going in the grass behind a tree, she picked up an old man and that was her new husband, she had to be physically restrained in a wheelchair because she would walk out the door and disappear, she would forget who we were, become scared and combative just to name a few of the things we dealt with.

I know your love for her is motivating this decision and it is admirable, I think most of us are concerned because you are young and have no idea how hard this is going to get, this point is the easy side of dementia, it only gets harder and worse. There are no normal days, this awful disease progresses at it's own will.

Yoy have obviously made your decision and nothing will sway you to change your mind, so as a previous poster said, go spend a day at a memory care facility and get a good look at your future. That and actual hands on day to day care are the only way you will know what you are dealing with. I pray your mom helps you as it takes a village to care for a dementia patient and 2 people have their work cut out for them. One person trying to do it becomes a statistic.

Good luck on this journey you have chosen to take.
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angiesoccer15 Aug 4, 2018
I truly appreciate your response. You are completely right! I haven’t “been here before” and I think I’m honestly trying to make myself BELIEVE that I can do this.....

This site has been very helpful in opening my eyes to whats going to happen.

To be be completely honest with you,
I am not choosing this. This is our only option at the moment. My aunt is to overwhelmed to continue care.

I’m hoping my mom and I can figure out my grandmothers financial situation and move forward form there.
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All I want to say is reconsider, you are only 22, working on finishing your Master's degree. With student loans? Not part of the equation but definitely something to think about.

I am sure your aunt is doing the best she can and what grandma will cooperate with. It is impossible to reason with anyone with dementia and it will get worse, much, much worse. You are too young to dedicate the next couple of years to grandma much less what could become twenty years or even more.

Find caregiver support meetings in your area. Go, even before grandma arrives, maybe you will change your mind. Go to the memory care day program to tour and observe. Even getting those with dementia into the car to go to the program is nearly impossible for many.

YouTube, check out Teepa Snow videos. Read, read and read this site, don't stop with this thread. Especially check out the many articles and read discussions and comments to those.

If I was your mother I would tell you do not offer your life and future and ambition to spend so much time and energy, yes lots of energy, to sacrifice for grandma. I would be willing to bet that not even Grandma would want you to do this.
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angiesoccer15 Aug 5, 2018
Thank yo so much for your reply. Im going to look at the resources you have provided!

My aunt is having difficulty caring for her. So, my mother and I are really the only option left.
We are currently looking into what help we can get.
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Since your grandmother does not have the money to pay a caregiver, you may want to look into seeing if she qualifies for Medicaid. She will likely need it as her care needs increase as her dementia gets worse.
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angiesoccer15 Aug 3, 2018
I will do that, thank you!
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You can't be there for her 24/7 becuase you must have other responsibilities but she is in intense situation and she needs a good care. For this problem i will suggest you a blog
https://perfecthomedefense.com/how-to-keep-your-seniors-and-the-elderly-safe-at-home/
Hope this would help.
Best of luck
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angiesoccer15 Aug 3, 2018
Thank you! I will check out that blog right now!
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Is it possible to go give your aunt a month or week vacation to get some hands on real life experience of where grandma is mentally in an environment that is safe and familiar to her? This will help you know what to expect and it will give your aunt a much needed break.

Is she so far into the disease that she needs 24/7 care? Did you get a 2nd opinion?

I ask because I was told my dad, who was very ill, had dementia and needed memory care. Once he recovered, 2 months in hospital and skilled nursing facility, he was able to go to assisted living for about 10 months, he has now moved to a different state all by himself, drove 1000 miles to move. Proper nutrition, managed meds and good medical care changed what the hospital docs believed was a terminal diagnosis of dementia, he would have died had I listened and not had 2nd opinion and my gut instinct. I mean who can answer questions when they are sick enough to be hospitalized and woke up abruptly then queried? Not me, I can't tell you what day of the month it is half the time, yikes, I would be committed in a heart beat with the criteria some docs use.

Please, do not be critical of your aunt, she has a young daughter that is her 1st priority and being a caregiver is a very trying situation to be in. You can not begin to imagine how very hard raising a child is, then add mom, who is like a big child, but has rights and can make their own decisions and choices but you have all the responsibility and no authority, no matter what she does, you can't get her to listen to you and you can't force her, you are tired and exhausted, lonely, angry, and grieving your lost mom, then you have a non-caregiver criticize your every move. What a tough spot to be in. Be kind to her, she might be the only person that will step up and give you a holiday or she might repay you in kind. Just think about it.

Best of luck on this life journey, you will be learning more than you can imagine.
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angiesoccer15 Aug 3, 2018
My grandma recently went to Arizona to spend 2 weeks with her sister and my grandma has been there before. While she was there, we were told that she would forget to eat, shower, not recall certain names, not able to continue a conversation without jumping to a new topic, she would put on her clothes but sometimes forget certain garments of clothing.


Getting a second opinion is a great idea!
I just looked into a memory care program near me and Im going to see if my grandmother qualifys for it.

I apologize for how I worded it it regards to my aunts situation. There is much much more background to the situation that I did not mention. But, you are entirely correct, as I do not understand the situation she is in.

I do have experience caring for a terminally ill person. As, my father got diagnosed with cancer when I was 15years old and I helped care for him for 2 years until he passed. I understand consistent hospital visits, hospice care, iv fluids, 24/7 care and so forth.


I am trying to get more insight on what to expect, prior to my grandmother arriving. So that I can have a sense of what to prepare for.
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Give your Aunt some slack. Its hard to keep someone with Dementia entertained. Especially, if they had no interests prior. My Moms life was her husband, children, Church and reading. She was involved with Church. But never joined a Woman's club or other organization. She never played games. She was an avide reader. By the time she came to live with me she had no idea how to use a remote or telephone. She hadn't been able to manage her meds for a while or her finances. She had problems putting her thoughts together and short term memory was gone. And made no sense when she was trying to tell u what she wanted. You couldn't play games with her because she couldn't retain the instructions. She could no longer read. Her mind could no longer comprehend or retain. The last book I gave her she tore out the page to use as a bookmark and didn't remember doing it. Talking to pictures has nothing to do with your Aunt not keeping GMa socialized. Its part of the Dementia. With Mom, her TV, dreams and reality were all one and the same. She always saw a little girl who disappeared when I came in the room. Like said, they start to unsocialize themselves. They get overwhelmed when too much is going on. Adjusting gets harder and harder. My Mom lasted at small gatherings for no more than an hour and was ready to leave. While with me, our socialization was going out to eat at dinner time. We always ran into someone we knew. Good for her and me. Really, they prefer peace and quiet. As someone has said on this forum, their brain is broke. Actually, its dying. There is no reversing the problem. Even though Gma was Diagnoised the beginning of the year, there were signs before that.

Please read up on Dementia before you take this responsibility on. Do not try to do it all. Can't be done. Know when to admit you can't do it. My Mom went to Daycare 3x a week. They bathed her while there. She had breakfast and lunch. Gave me and husband some "time off". There are resources out there, use them. If Gma has no money, Medicaid has services for aides and payment or partial payment for DC. Dementia becomes a 24/7 thing. Be ready to make that decision that Gma needs more care than Mom or u can give.
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angiesoccer15 Aug 1, 2018
Thank you so much!
I really appreciate how straightforward you have described everything!!

I am continuing to read up on on Dementia.
I definitely have a lot to learn!!

Again I appreciate your response!

If you have any other suggestions, please feel free to share.

My mother and I feel like we are going in this blindly and really do want as much insight as possible.
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If financially able, look for a memory care day program.  Even if she can only go a couple of times a week.  My mom attends one daily and it's been a real blessing.  Make sure there is a variety of things going on, mom attend one where all they did was play board games and watch movies, she was bored.  The one she goes to now has arts/crafts, music, instrument playing, movies, visiting animals, children, musicians, and games.  She usually can't do the art/crafts so they find something else for her to do but keep her there with everyone else.  That's important too.  Best of luck.
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angiesoccer15 Jul 30, 2018
thank you so much! i will look into one of these programs!
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