Anyone have advice about power outage?? and Life in General?? My first post.

samremyva

Today our home lost power for no apparent reason.. Maybe car hit a pole.. maybe lightning? I don't know.. but my parents, mostly my mom with Alz COULD NOT understand that I couldn't call someone and just have it fixed. It was out for about an hour and the complete off the chain conversation had me completely dumbfounded?!? I couldn't find a way to help her understand that I had reported it and we had to just wait. She got very upset that the TV wasn't working and got upset about every other thing in the world.. Her newest complaint is that I have moved everything in her kitchen and now she can't find anything.. of course, NOTHING has been moved. no dishes, utensils, pots, pans.. Nothing! But she screams and attacks me for it. She is on medication that is supposed to calm her, but it doesn't appear to be working and I am seriously worried that she will hit or kick my dad and he will push her away and she will fall because he has some cognitive decline as well due to a stroke and some mild dementia.. I just don't know what to do anymore.. Mom has declined so quickly since September.. I wasn't prepared. She is 84 and I am 61 and it's my hubby's time to enjoy his retirement and I am stuck. We have some help but I haven't slept at home in my bed since September 1 and help my dad all night long with toileting. I haven't slept a full night.. I am so tired.. OH! I also have a 14 yr old daughter that I only see at supper time about 5 days a week. She's getting the shaft.. we cannot afford a facility and we don't qualify for Medicaid.. so I am trapped. I hate it. I miss my mom and want to talk to her about it but she's gone more and more each day.. This is so hard.

SoCo Kirsten

I just went through an admittedly complicated process of setting up a medicaid trust with an attorney. it's highly specific, but that MIGHT help her get into a facility. It's highly specialized but a regular wills/elder law attorney should be able to refer you. In your spare time...

Meanwhile, can you afford respite care, even once a week? And can your mom be distracted with desserts or other treats she likes?

SDianeL

so sorry you are going through this. We understand. You can’t reason with someone whose reasoner is broken. No amount of explaining will help. Maybe create a fib? She’s also having delusions. Speak to her doctor about her agitation and delusions and ask for a change in meds or dose.

samremyva

https://alzconnected.org/discussion/comment/269693#Comment_269693

We have made preparations for this, but we are still in the lookback period. The problem is that if one goes to a facility, and their income/retirement payments are taken by the gov't, then there is not enough for the other to live in the home.. They will both have to be placed in order for it to work.. There needs to be a better way.. What I really need is a sibling or two! :)

harshedbuzz

@samremyva

Did a certified elder law attorney tell you this?

Most, maybe all, states allow the spouse of the individual on Institutional Medicaid to retain their home (under a reasonable value) for their lifetime and have stipend allotted a community spouse to pay for their own needs.

https://www.medicaidlongtermcare.org/protection/community-spouse-resource-allowance/

To my ear it sounds like your mom's dementia has progressed beyond what would be considered mild. She may need more or different medications to manage this behavior.

HB

H1235

https://alzconnected.org/discussion/comment/269739#Comment_269739

You need to live your life! Your family needs you! You said you are getting up multiple times a night to help your dad with toileting. I don’t see how you’re going to have any more time with your family if just one of them is placed in a facility. It sounds to me like they both need a care facility. If you’re not aware some facilities can have a waiting list. I agree with others that your mom’s medication probably needs a dose increase or something stronger. I have attached another Medicaid resource. I have a friend who’s dad is in a nursing home and receive Medicaid and their mom is still able to live in her home. If you have not seen a lawyer a would strongly recommend it.

https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

samremyva

https://alzconnected.org/discussion/comment/269749#Comment_269749

Yes. I think so, too. I am calling her Dr tomorrow. Today was a day to deal with an allergic reaction to antibiotics for my dad.. Covered head to toe in a rash.. It's always something, right?

As far as medicaid, I got the info from the Medicaid site.. also - If they don't own a home now, I actually don't know how that works.. They have lived in their home for over 20 years, but we bought it. The expenses that they have now actually wouldn't change much if one of them were in a facility. - A bit of the food bill, and if Daddy went to a facility, the cost of his supplies would save some money, I guess. But they're not doing anything but going to Drs at this point.. no leisure activities at all.. I guess I need to call an attorney..

samremyva

https://alzconnected.org/discussion/comment/269756#Comment_269756

I am going to make some calls tomorrow about facilities.. Thanks..

harshedbuzz

@samremyva

Your situation is a little unique and worth discussing with a CELA. I wouldn't make any move, aside from dealing with the rash, until you understand the rules you'll be navigating.

If you own the home, then it wouldn't factor into qualifying although, depending on the state mom's spouse-in-the-community allowance should cover her living expenses. If dad needs medical care and mom has progressed to a degree that she's paranoid and agitated perhaps placing both makes sense. Often elderly couple provide considerable scaffolding for each other which doesn't become apparent until one is removed and the other collapses.

When looking at facilities with Medicaid in mind there are a few caveats.

Firstly, not all states offer Medicaid in a MCF so if you need care, the person must qualify for a SNF which is a higher bar.

Secondly, many places that do accept Medicaid, do so under a business model that requires the family to be self-pay for 2-3 years before they transition to Medicaid. Ask about this.

Thirdly, related to the second, places that do accept Medicaid can have waitlists because they prioritize those folks who have been in their community for 2-3 years and are transitioning to Medicaid. Ask about waitlists.

You mention something about saving money on supplies. I'm not sure what supplies you're talking about, but in MC, supplies (like diapers and wipes) aren't generally included as part of the monthly fee. Even things like toilet paper and soap aren't included in some places. Medical equipment would be covered by either Medicare or regular Medicaid. Once on hospice, some "supplies" might be covered but it depends on the provider.

Good luck.

HB