Dealing with a grandparent with Alheimzer's and dementia with a 3yr old


Okay, so... I live with my boyfriend and our little boy who will be 4 in a few months. My boyfriend's mother has severe Alheimzer's and dementia. Over the past few months she's gotten worse then usual and I really don't know how to handle myself because of the fact it involves my son!

We live in a town home. It's 2 stories. So my boyfriend's mom has access to upstairs. We had to replace all the locks because she's a wandering risk. We also have a lock on the door to the basement cause that's where me, my boyfriend and our son live. It's 2 stories if you include the basement.

Anyway, since the stove and main fridge are upstairs (we have a mini fridge downstairs), we have to go upstairs to get food. Whenever my son is up there he likes to run laps around the house. He's not hurting anyone and me and my boyfriend prefer it if we're up there for a few hours cooking or whatever. I'm honestly tired of my boyfriend's mother yelling at my son for running through the upstairs of the house. I've even seen her put her foot out trying to trip him while he's running! I've seen her grab his arm once and I almost lost it. I'm very protective of my child.

Sometimes when my son runs his laps, his grandma thinks we have neighbors downstairs or something even after we tell her otherwise. But once she's told otherwise, she'll make up some other story as to why he's being bad and will continue yelling at him. I'm also tired of her cheap snarky comments toward me as a mother.... This entire situation has made me more depressed then I usually am cause she can't just chill and let my son be a damn kid.

I've told my son that grandma is sick in her head and that she doesn't understand, but I don't think he's old enough to comprehend that yet. Also, my boyfriend is the only one that can bring her back to reality. She doesn't remember me 99% of the time even though I moved here in Dec 2012 before she had fully lost it. Back then she could still drive, cook etc. Now she literally can't do anything. She basically sleeps and eats. That's it. We also administer her medicine 3 times a day. She's not the healthiest and she's 80 years old.

We pay for an adult care center but getting her up to actually go is a pain and many times she'll argue about it. In the end she ends up not going cause trying to get her out of the house is more stressful then letting her be. We have a caregiver that comes twice a week to watch her, clean and cook and sometimes watch our son but I always worry about leaving my son around his grandma these days. Our caregiver has told us sometimes how mean my boyfriend's mother is to my boy etc. And it's just.... I don't know what to do anymore.

I want to put her in a home but we can't afford it. I asked my boyfriend about a state home but he's against it cause he says they're worse then ones you pay for outright. We have no lives. We can only leave anywhere 2 times a week together when the caregiver is here otherwise my boyfriend goes alone to do errands because someone always has to be at home. Plus my boyfriend has Parkinsons so he can't watch our son by himself. My boyfriend is tied to his mom's bank account which is how we afford basic necessities and pay the bills. I have a bank account but no income.

I'm also chronically ill and my own Dr. doesn't know what's wrong with me. So with me and my boyfriend unable to work, we're basically living off of his mother's social security check. So you can imagine how difficult this is to deal with.

How do you all deal with this? I feel like I'm at my wits end, mostly because of how she treats my child. She's gotten so much worse lately. The anger is almost instant the second my son starts running. Literally, that's all he does. He just runs. He usually doesn't get into stuff or do anything out of the ordinary. He just has a lot of energy. And when he sits down to eat or gets pulled into a cartoon it's like an instant switch off for his grandma and all of sudden she will go on and on and on about what a good boy he is..... I'm very worried how this erratic behavior will affect my child.

Most of the time she doesn't even know where she is. Many times she doesn't recognize her own son anymore. Occasionally she thinks her husband is still alive even though she's been twice widowed. Or how she'll think she's babysitting when she's not.... Or when she thinks her parents are supposed to come pick her up even though they've been dead for years. She's so far deteriorated at this point. Only things she can still do herself is make toast, dress herself and go to the bathroom.

I guess I'm just looking for advice on how to deal with this with my highly energetic 3 year old son. Sorry for the long background story. Just thought it'd help paint the picture of what's going on.

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Hi Mamawulf, to answer your original question about how to handle co-habitating with a preschooler and an elderly grandma with dementia, here are some things that helped with my grandpa. (We did not live with him but cared for him nearby while my kids were very young.)

1. Try to keep upstairs visits short, like half an hour. More than that at this stage is probably going to tax your boyfriend's mom. The motion, sound, etc. is probably overstimulating for her.

2. Pay attention to both your son's and his grandma's natural schedules. I would try to log both their sleep schedules, when they eat, how their moods fluctuate through the day for a couple of weeks. Try to be strategic with how you arrange your day (meal prep, caregiver visits, drs appointments, etc.)
-Try to prepare meals or ingredients ahead of time so you aren't spending a lot of time upstairs in the early evening when she might be more agitated.
-Maybe have your son visit grandma when they are both in relatively good moods, like after breakfast or lunch.
-A lot of people with dementia experience sundowners. Around dusk they start to get anxious, disoriented or clingy and that can continue into the night. That is probably the same time your son gets a little whiny (at least my kids would start to get a little pesky around 4:00pm at that age.) I would try to make it a priority to spend evening time with your son and have your boyfriend do dishes and visit with his mom.

3. It's great that you are getting your son outside. He might still want to run when he gets indoors, but at least he is getting some time to be wild where he isn't crabbed at for it.

4. Take care of yourself and make sure you are OK with the situation. Your son is probably much more in-tuned with you than he is with his grandma. If you feel good about how you are handling things he will pick up on that. If you are stressed, he will absorb that.

5. Avoid sugar before he will be spending time with his grandma. Not only doe sit rev little ones up, but it makes it harder for them to listen or to stop when you need them to take a break.

6. For safety, obviously, don't leave your son alone with grandma. And we used to shut off the breaker to the stove when we weren't with grandpa, just in case. (He generally wasn't interested in it, but he went through a phase where he was pressing a lot of buttons and we were afraid he'd start messing with the stove.)

It's good that you are trying to educate yourself about your boyfriend's mom's dementia. She really can't help how she's acting. And her needs will increase and it may not be in a predictable way. If your boyfriend isn't addressing things head on, do more research on your own. There are probably resources in your area for elderly people who could use some assistance but who aren't at poverty level. You can learn more about these through the Area Agency on Aging or Department of Aging. (There are different names depending on the region, but they are usually through the county.) Your boyfriend doesn't sound like he can do a lot of planning right now, so keep trying to take of yourself and your son -- if things change, you will both need to have your feet on solid ground.

One final tip: once your son gets into school, you can volunteer there. If part-time jobs become available at school, and you already have been volunteering, it gives you a toe in the door. It is a nice way to ease back into working while having a realistic schedule as a mom.

I just get the impression that those are excuses that are used to often. There is help out there but you must pick up the phone and do it, even if you are on the phone all day to get the ball rolling. Things won't change unless you stop complaining and start making changes. Life may not be "fair" but it's up to you if you want to make chicken crap or chicken salad. It's up to you if you want to spread your wings and fly. What kind of example is being set to the son?

I don't think calling out the OP for not working is fair, she has a small child and an elder to care for and is trying to deal with her own health problems, it's hard enough to find work without all those restrictions and commitments thrown in the mix.

To me, it looks like you are making excuses not to find work or a solution. There are plenty of work from home jobs and jobs that don't require you to to anything physical that would harm your back. What about you looking at government agencies that assess your needs and skills and help you find a job? Your boyfriend can dispute the SSI ruling because there are differences between SSI and SSD.

Something else you need to be aware of... If your BF is hoping to inherit his mother's half of the house one day it most likely isn't going to happen, when she eventually does enter a facility on Medicaid everything she has will go toward the cost of her care and there would be a lien placed on her half of the house.

Putting your boyfriends mother in a state home will end any income you and your family rely on for living. The mother's income will go straight to paying the nursing home. Your boyfriend should qualify for Social Security disability if he has Parkinson's Disease. I do not know what your health issues are, but it can take a long time to qualify for SSI disability. What you want will not happen as long as you let the situation you are in remain the same. It is not a workable solution for you or your son.

Your son has to come first. I would ask your Medicaid case worker if she could recommend any programs where you might enroll to learn a career as it doesn’t sound as if your BF has any plans for the future, his nor his family.
You’ll have to make that happen. You are never too old to learn.
You have to set the example for your son. Where he is living now is not a good environment.
You have to break this dependency on others & make a plan to better yourself.
You can do it, back problems or not. Consider classes in IT. Get your GED if you aren’t a high school grad and go to a community college.
Agree with Barbara as well. Seek therapy to work through your issues.
Good luck.

Start by getting an evaluation for your son. Every State has a Committe on Preschool Special Education which provides services to children 3 to 5. If nothing else, this will get you access to a social worker who may be able to point you to resources for your child in your area, even if he doesn't qualify for services.

It sounds as though you would benefit from therapy/mental health services.

You are stuck in a co-dependent relationship and don't see any way to change that. If you are seeing an MD (I assume you are, since you say your doctors have no idea what is wrong with you) please ask for a referral to a mental health professional who can help you find your way out of this quamire.

@freqflyer yes it's always been a finished basement. It's already been tested. It's safe. Thank you for your concern.

MamaWulf, may I ask if the downstair's area where you live, has it always been a finished area with a bedroom, full bath, and family room?

Why I ask, and not to scare you, I am concerned about "radon". Have hubby or you go to Home Depot and purchase a radon tester, and set it up in the house. I would hate to have you both plus your son be sleeping in an area that has a higher than allowed radon reading. Chances are it is ok, but to be on a safe side, please have it tested.

As for the joint bank account, I had a joint account with my Dad so I could pay his bills out of that account, thus be able to sign the checks. None of that money was tied to me, as Dad was the primary holder of the account, and the interest gained on the account went to his social security number for IRS purposes, and not mine.

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