When to know if it’s the right time to put your parents into AL and how to go about it.

mlowe6

I love my parents deeply and have a great deal of respect for them however my dad has concussion syndrome from 2 previous falls and a brain bleed that has caused slight dementia, an auditory processing disorder and speech issues. My mom suffers from dementia and sciatica and a need to never follow Drs. Orders or physical therapy orders. They are both having issues with medication intake which I cannot legally help them with as their caretaker. My mom has had about 12 falls in the past 6 months my dad about 5-7 in the past year. I feel like for their safety it would be best for them to go into AL. They also have a 2 story home. It would help them make new friends and take some of the work load off their lifestyle. I spend about 30 hrs a wk caregiving for them and it’s never enough. I’m exhausted and this has taken a toll on my immune system, back, finances, and marriage. They absolutely refuse to move out of their home but I don’t know where I stand legally even though I have a DPOA. Any help you can give me would be great fully appreciated.

Jo C.

Hello and a very warm welcome to you. This is certainly quite a challenge; your parents are blessed to have such a loving and caring daughter. The very first thing I would do under the circumstances would be to consult a Certified Elder Law Attorney to be certain just what in your state the legal ramifications are for your ability to step in over parental objections and to advise you on planning. While you may not wish to do so at this point, it would be good to ask about Guardianship should that become necessary in the future. Knowledge really is power when things are changing rapidly.

It is often extremely difficult to convince our Loved Ones (LOs) to move from their home even when we know it is dangerous for them to continue as they are. Screening facilities first and then taking the parents to see the one that is the best fit to have them "enjoy" the setting and all that is available to them sometimes is helpful. It is parent specific how this goes as changes can be threatening to a person with dementia. NOTE: With the frequent falls, some facilities may not be open to accepting them as they are both high risk; just be prepared for such questions and always be honest.

Question: Would one or both of them be best served in a Memory Care setting?

One of the questions I have would be, considering the depth and breadth of their conditions whether a standard Assisted Living setting would be an appropriate setting for them. ALFs are licensed as "assisted" only and they are not staffed for much direct close care or one on one care as conditions evolve. They would be alone in their apartment, having to get to a dining room for meals at the right time and would not be in view of staff nor have significant staff support on the 24 hour continuum.

There are some ALFs that specialize in dementia residents and are formatted differently, but these types of care settings are far and few between and most are not apartments, but rooms. Most important is to place your LOs for what is their "worst" day capabilities and behaviors; not the best days. The disease will continue to evolve and while it is a bit easier to gain admission to an ALF setting, (they want to fill their census), it is not at all unusual for the facility to demand that the residents leave if their care burden is too high or if they are a high risk, or the resident is not a good fit. You would definitely want to avoid that dynamic.

I can well understand how exhausted you must be, that is understandable considering the situation as it is. The initial screening of ALFs for persons with dementia would be something you would need to do as well as visiting them to see the settings yourself. That is no small thing. If you had a facility that had different levels of care in different units as a parent's condition declined, that would be helpful for the future. If the parents refuse to move, then the next step would be to consider having 24 help in the house; that too takes some maneuvering to have parents accept that and it would need consistent oversight.

It may be helpful to speak to a professional Social Worker; the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900; there are no fees for this service. If you call, ask to be transferred to a Care Consultant. As said, no fees. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive and can often assist us with our problem solving and often have useful information.

You will get much more input from other Members and may receive some new information and advice that will be more helpful. Please do let us know how you are and how things are going; we are all here in support of one another and that now includes you too.

J.

mlowe6

I do feel like they are now past the point of Al and they both need a MC facility. Thank you so much for all your advice I think this will be a difficult task considering our small town in Indiana. I will try to call the 1800 number as soon as I get a chance. Today we are having the discussion with their Dr because the falls have gotten out of hand and my dads situation is sad because of his speech and auditory processing disorder. They just need more help than I can give them even though I’ve had about 50 credits of medical college classes it’s not enough for what I’m dealing with. Plus all this takes time to do. Thank you so much for your valuable help you don’t know how much I appreciate any little bit of advice I CAN GET. Thanks for everything.

Marta

Hello, fellow Hoosier, and welcome to the Board.

if you follow Jo C’s advice, you will be well on your way to working out a solution for your parents.

Anytime you hit a roadblock, come here and we’ll help you through it.

Legal measures first.

Would you share where you got your medical education?

mlowe6

Yes IUSB I took medical terminology x3 semesters, anatomy, healthcare, medical ethics, dietician classes, phlebotomy and several others. I was on my way to becoming a medical assistant when I had to have back surgery then had a stroke. It took a while to gain back all my mobility.

We had the talk with the Dr today and I sat down today afterwards with DH and explained how much I loved them and wanted them to be on 1 floor to be safe after they both have fallen so many times lately including down their stairwell. They agreed to invest and look at AL. However as we were leaving they thought the door was shut but it wasn’t quite closed and I heard my mom say “ I’m never moving out of this house it’s finally beautiful and I have too much stuff to move somewhere smaller.” We just remodeled their entire home by ourself from top to bottom while they went on vacation my hubby and me, new kitchen, furniture, flooring, bathrooms, curtains, banquette in the Dining room, all new appliances. The works. Maybe that was the wrong thing to do. We have done everything to try to make them happy. I just want them safe and they act like I want them to go to an Insane asylum. I’ve told them how much it’s taken out of my own body and that I need help. My mom shouldn’t and doesn’t want to drive and my dad has his drivers license suspended due to his concussive syndrome. So they really do need a lot of help but just don’t see it. They just want me to do everything for them but I physically can’t. I told them if AL was not an option then I am switching their provider help to another place with real services that can provide them with more hours. They will have to have cameras installed in the home to keep an eye on them and the help when I cannot be there and anything sentimental or of value must leave the house so it doesn’t get stolen because now my mom swears everyone is stealing from her even though there hasn’t been very many people at all there at their home and never without supervision. I just don’t like having to get stern or be the only one in the situation who has all the cognitive decision making but they are not capable of it. I feel like they think I’m trying to be mean to them when I just really want them to live out their life with quality safety and love.

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mlowe6

They do not do their bills or touch their financials but she has done dumb stuff like call Allstate and cancel the mortgage insurance. So had to hand deliver a POA and explain that no decision by them gets made without my approval period. Last month she signed up for some dumb subscription online, monthly and I had to call and get their money back explaining that she has dementia and their is was a dpoa in place and they were kind enough to return the money. They gave me a great idea to buy a gift card every month for their groceries if she goes on her own since she won’t give up the car, that’s why we’re considering disabling it, then she can’t overdraw the account. She gets her Medicaid Medicare amount of $250 that goes towards Walmart for that stuff but they always spend way more. I never let them spend money till every bill has been paid. Your ideas are so good but many of them go against a lot of my convictions of never tell a lie and respect and honor your parents, however their disease has now taken over andI can see where we are headed. Drastic times call for drastic measures. I will read your article/ book and thank you so much for all your advice I really appreciate it. As for the lawyer thing they have no money for that I have done all there lawyer stuff online. I took enough law classes in college when I got my business degree to have a pretty good handle on the basics before I took about 50 credits in medical and healthcare. While no not a paralegal or lawyer there is just no money for that so that option isn’t there. Maybe Legal Aid locally could help. Once again thank you for all your advice to you and everyone on the boards this gives me a lot to get started with and I am so grateful for all the help since I have had no one to really lean on with a lot of experience in this area. Truly thank you thank you to everyone!

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mlowe6

First off when the remodel was done they did a refi on their home 2 yrs ago at 2.1 % and their payment didn’t go up it went down because of lowered interest rates at the time. Also 2 yrs ago was a whole different ballgame cognitively speaking and physically speaking they were not in the condition they are in now. I do have the DPOA and yes I have been wondering about if I would be responsible if something would happen to them if my mom got in a car accident or my dad took the car without thinking. My mom has argued though that she still has the right to drive and doesn’t have to take a driving test in our state till next year when she turns 85 so she isn’t giving up the car. So I guess the distributor cap or spark plugs get pulled. She uses a debit card for groceries which leads me back to the point of taking away their cards as I am a full partner on their accounts. I have already removed all the checks out of their house so they can’t right any checks. I had no idea that I could maybe get a free consultation with an elder law attorney. Once again I’m trying to take in all the information I can to keep them safe I read the suggested book and I will call an elder law attorney. They just have no money so I don’t know how that’s going to work. I will just continue doing my best as I continue learning and trying to keep them safe and loving them hard.

harshedbuzz

First, I want to say I am sorry for all that you are going through with this situation. It's typical to meet resistance when taking steps to keep your parents safe as dementia progresses, but it doesn't feel that way when you're in it. This situation really isn't that unique for many of us, but that doesn't make it easier in the moment.

I agree with Victoria on this. You need a CELA asap. There are those who offer a free consultation and others who operate under a pay-as-you-go model. I don't think my mom paid more than $1200 setting up POAs and getting advice about Medicaid qualifying. The CELA also vetted contracts for the sale of 2 homes and the MCF before signing. Your parents should be footing this bill as it is for their care.

Your mom has to stop driving. Full stop. If she has an accident, as POA you could also be held accountable through the criminal and/or civil courts. The optics of having secured mom's money being a priority over her safety and that of others would not bode well for you against the parents of the kid she ran over. Consider, too, how much she's progressed in the disease process in the 2 years since you remodeled the house. By the time a court date was scheduled, she would be even more impaired to a jury than she was at the time of the accident.

It also sounds like your parents need MC not a hospitality-model AL. ALs typically offer meals, a weekly cleaning and a daily well check. Plus, the activities will not be dementia friendly. The staff are less likely to have dementia training. And the other residents will, at best, ignore them once they realize they have had a cognitive shift. My aunt-WD was bullied by meangirls in AL.

Good luck. This is all hard stuff.

HB