Mother Has Dementia

MZayas86

Hello,

I am very new to this and have never used open forums or discussions to talk about my personal life. I recently moved in both of my parents with me because of their illness and they could no longer take care of themselves. My mother has mid-later stage dementia and my father has early onset Alzheimer’s. I also have a 4 year old toddler. Sometimes I feel like I have no life, my mom has sundown and can become really agitated which scares my toddler. I know it’s not her but the disease and I can’t seem to find my patience. I give in to the arguing and get frustrated. I would love some techniques or advice on how to be more patient. My plan is to put her in assisted living but since we just moved to a new state I have to apply for insurance all over again and the process might take a while. It makes me feel guilty because I can’t take care of her but I also want her to be safe, felt loved. I’ve been questioning my faith because taking care of two parents with Alzheimer’s and a toddler. This was supposed to be my time to enjoy my toddler and we wanted to have a 2nd kid but have decided to pause due to all of the emotional stress we are undertaking. It doesn’t seem fair but I also know life comes with it’s challenges.

SusanB-dil

Hi MZayas86 - welcome to 'here', but sorry for the reason. Do not worry about sharing here, there is much support and advice.

You have much on your plate, both your folks and a toddler... Caring for just one is a lot to handle.

A couple things come to mind - first is paperwork - do you have DPOA and HIPPA accesses? very important. Another is the assisted living - not so sure that would be a good fit, since both parents probably should not be taking care of themselves/each other. Do look into memory care, instead. Agree that this current set-up is not 'a life'. In the meantime - do look into adult daycare, and some assistance at least a few days a week. What you are doing now is not sustainable!

dancsfo

I agree with what @SusanB-dil has written. It seems that if only your mother goes to memory care (MC), then both your mother and father may feel lonely not being with each other, but I presume you father can go visit. There is also respite care, which can give you some way to relieve yourself from daily stress. That may be a good temporary solution until you settle on full-time MC. I think it's like the adult day care mentioned earlier, but there may be small differences.

Marta

If you’re waiting for insurance to kick in, don’t wait. Memory Care is not covered by Medicare, because MC is considered custodial care, as opposed to skilled nursing care, which is provided in nursing homes. If your parents qualify for skilled nursing AND if they qualify financially, then MEDICAID would potentially cover nursing home care.

You need to see a CELA ( certified elder law attorney) yesterday to make Medicaid happen. Also be aware that Medicaid looks back five years to determine whether any of your parents’ assets were redirected to someone else so as to shelter them from Medicaid.

Your little family deserves to focus inward.

Also please be aware that a four year old child may be adversely impacted by a PWD in the home, as you have already seen.

Again - see the CELA ASAP. Your parents assets CAN be used for estate planning and to prepay for funerals.

You can do this, but not alone. Get some help in the home. Do your parents have long term care insurance? Their policies may pay for in-home care. Try Care.com

Come back here often. You are one of us now.

[Deleted User]

The user and all related content has been deleted.

Emily 123

MZayas86,

Your parents are lucky people to have a kind daughter like you. Lots of people try out in-home care for their parent(s) with dementia, and subsequently move their parent(s) to where they can have the 24/7 care they require. It doesn't mean you don't love them or care for them.

Don't beat yourself up. It just exhausts you, and there's no point. (Even Mother Theresa was pretty jaded about caretaking.) Can you get an aide in to assist with mom? They can do light meals, laundry, etc.

I can't tell you how to be more patient, I have challenges and regrets myself with my mom. It sounds like you know when you need to step away. It's just difficult, isn't it? I can't recall who on here recently said something to the effect of 'of course your mother knows how to push your buttons-she installed them, didn't she?' (and yes dear forum, I did indeed search the threads to attribute it, because I think it's perfect. I searched 'push button' and 'mom button' and it picked up the 'Just need to talk to my friends' thread discussing push-start cars.)

You also might want to check with your mother's healthcare provider, too, about meds or a med adjustment to help with the agitation/sundowning.