My father is in stage 4 dementia, what should I be doing now to get ready before mid stage dementia hits?

Be sure and do a rental/roommate agreement and make sure that it is fair market value for the neighborhood. This will stop any issues with Medicaid.

I am sorry that your family is facing this awful disease. They sound very blessed to have you.

If dad insists on cooking, I would find alternative ways for him to prepare meals that have shut off safety features. Countertop induction cookers automatically shut off after 45 minutes and some even have heat sensor shut off. Microwaves can cause fires and need to be monitored.

One thing that I had to decide, what is my realistic game changer. I can feed, clothe, clean but I can not deal with adult incontinence. Do you have something that says it is time for a different plan? Really think about this, it will save your sanity. It is okay that we all have a point that things are bigger then we can deal with, it doesn't mean we fail.

Another thing, don't make dad any promises about his future and what his care might be. You may have to place him and if you promised never to put him in a home, well you can see how that would be.

And most importantly, be kind to yourself. This journey takes us places that we could never imagine, we lose our loved one bit by bit, it is not our fault and nothing we did or didn't do would change anything. So don't blame yourself for the choices that keep him safe and cared for as best as possible. Don't beat yourself up when you have to walk away, hang up or take an extended vacation or break. Learn to laugh at the absurd things that will be said and done. Remember that it is important to leak (cry) or you could blow from the built up pressure. Keep your expectations of how others care for him real or you will be disgusted, because no one will ever care exactly like you and others that love him, pick your battles wisely or you will be at war all the time.

Great big warm hug! This is a marathon not a sprint, pace yourself 🤗

Edit: use his money to cover his expenses. The attorney can set up the monthly living expenses so they are not taxable income to you. Then his money should be used for caregivers, do not use his share of monthly housing to cover caregivers. If he saved for a rainy day time to break out the umbrella, it is raining. No need to keep a savings account for inheritance, because it will all go to his care. You should not be paying for anything that he can afford to pay or qualify for assistance. Remember, you will get old and need your rainy day fund.

Hi Martz06,

Gosh, I remember being where you are. When I learned of my mother's diagnosis, Mid/Moderate Mixed Dementia - Vascular and Alzheimer's, after she was tested with a neuropsychologist, I immediately went into "take action" mode. Mom was living in a very nice independent senior living apartment complex. After Mom forgot she was frying chicken one day and set off the smoke detectors in her apartment, I knew it was time for extra monitoring for her. This is what prompted me to set up the appointment for her to be tested. It took me 6 months to get the appointment! They were that backlogged. I turned off the breaker to her stove and asked her neighbor to check on her throughout the day. I made made sure she had food that she did not have to cook. I was with her 4 out of 7 days when I was off from work. He did, and all was well until I was able to get her moved into an assisted living facility.

To date, Mom has declined significantly. She has been in her AL facility now for almost 8 months. She turned 85 in March. Mom now receives Palliative Care. She is in stage 6c. And, she loves and takes care of a baby doll, which I am thankful for especially since Covid-19 has her facility on lock down.

Please get your dad tested so you will know what type of dementia you are dealing with. You have received great advice already from MacinCT and sjplegacy and HelloImMinsu.

Good luck and keep coming back to this forum. We are all in this journey together. Some are just beginning their journey and others are farther along. I have found that there is always somebody who can share their story with me and help me figure this out.

Stay well and take care of your own well being.

Sounds like you'v got things pretty well figured out. Keep looking into facilities and take the lawyer's advice about rent.

I applaud you for trying to stay ahead of the game by educating yourself. You say he's at stage 4 but don't say what's causing his dementia. Dementia is not a disease but an umbrella term that implies a cognitive decline along with the inability to perform certain daily activities like eating, dressing, showering, etc. The cause of the dementia needs to be determined in order to plan ahead. Different diseases like Alzheimer's, Lewy body, or vascular dementias manifest themselves differently in a person. Parkinson's and MS, for instance, can cause dementia symptoms. So although you're trying to plan ahead, you may be going in the wrong direction. Your dad should be diagnosed to determine the cause of his symptoms. Two great books that might help your learning more are "The 36 Hour Day" and "Learning to Speak Alzheimer's". Both lean more towards AD, but offer excellent information on dementia and its causes.

What amount of assets is he trying to pay down? If it's substantial, a memory care facility rather than a nursing home would be preferable. There's a huge difference. Begin by touring some AL/MC facilities in your area. Whether it's an AL/MC facility or a nursing home, get your name on their waiting list.

A Memory Care facility would suit him better than a Nursing Home.
But there are options to consider.
Is it possible for him to stay where he is if you got caregivers in to help out?
Is the house he is in adapted so that he can stay if he is using a walker or wheelchair? How about the use of equipment? Is a Hoyer Lift going to fit into the bathroom, would a wheelchair fit into the bathroom? Is the shower such that he does not have to step over the shower pan to get into it? Can he afford caregivers?
By the way is your dad a Veteran? If so the VA might be of help and depending on where and when he served it might be just a little help or it could be a LOT of help.
If you do not think it is safe now for him to be alone install a security system so you can see what is going on and an alarm so if he leaves the house you would know. A security system like this would help when you have caregivers in as well. (video no audio with caregivers though and not in a bathroom they would use)
I would also remove knobs on the stove.
I agree with the rent and he should also be paying electric, gas, water, garbage pickup and insurance unless you figure that into the rent.
If he has done anything that you would deem dangerous then it is time to get past the thinking and planning stage and get the gears in motion as to what the long term plan is. With Dementia you don't know what will happen next nor will you get advance warning when the next decline will happen.
Filters are gone and he may do something he has never done before. He might never wander but one minute he is there the next he is gone, he may never have been a violent person then one day out of the blue he pushes you. You need to keep him safe but you need to be safe as well.

Martz, as the others have noted, you have made good progress already! My 91-yr old mom lives next door to me too! She is only just beginning to have some cognitive decline and she is the kind of person who cannot see her condition and is resistant to any suggestions that she might be a teeny bit forgetful. I do most of the shopping and cooking and try to remove any reason for her to do certain things that she is becoming less able to do safely.

Shutting down his stove and microwave, toaster, etc. is a good idea. Also remove any medications from his home, and any sensitive paperwork should be stored in your home (like checkbooks, cc's, personal info like ssn, etc). If you don't have room in your house, keep them in a small, fireproof safe in his and keep the key. If he has access to a phone, this is a gateway to financial predators and needs to be monitored very closely. If he still drives, even a short distance, this needs to come to an end.

You haven't provided other info, like his age or if he has any health issues, but coming concerns will be falling and maybe wandering. Maybe install a Ring doorbell, or remote door locks and put sign up on his door saying "No Solicitors".

Yes to him paying rent by check if you are joint on a checking account -- it has to be a clear paper trail. Also do charge him for caregiving, ditto to paper trail. You may want to check into care agencies and consider a companion for him. Keeping an LO in their home also means a degree of social isolation and sterile environment. My 2 aunts in FL have a Visiting Angels companion who does light housekeeping, drives them wherever they want to go, chats and plays cards with them and they love her to pieces. She comes 4-hrs 6 days a week, about $22 p/hr, for her. Don't hire a private person -- that's my advice from experience with elder financial fraud. Plus the headache of having to be an employer of any private help.

My mom and I made an agreement a few years ago that I would keep her in her home as long as it was safe and wasn't an undue burden for me/my family to care for her, as my hubs and I have a company w/employees still and I'll be working full time for at least the next 4 years.

You may want to start researching and visiting MC facilities that are as close to you as possible and check if there's a waiting list and make sure they accept Medicaid recipients. You've done a great job already -- I wish you a few more sweet years with your dad next door!

So glad you found a way to keep your dad close to you. I agree that having him pay rent is an excellent idea. Disconnect any stove or microwave so he can not "cook" and needs to allow you to take on that responsibility. If you are worried about wandering, install a security system on doors and windows that will notify you when they are opened. If he comes to need a caregiver, you can arrange home health aides for the day time and a sitter at night - use his rent to cover their expenses.

Rental income is taxable income to you (although you also get depreciation expense).  Our eldercare attorney recommended a "roommate" agreement where mom pays a fair percentage of costs, and the IRS does not treat as taxable.

As others have mentioned but I'll emphasize, if you are considering asking your father to pay rent and needing Medicaid is either a possibility or a definite part of the plan, be certain to document everything related to this, including that checks or money (better to use checks because you can document the amount and purpose more easily) given to you are for rent and not gifts. However, FloridaDD's comment about a "roommate" agreement might prove to be beneficial--something more to keep in mind as you weigh all your options.

Aloha Martz06,
My mom is also in stage 4/5 dementia. You can check out Teepa Snow videos
on YouTube, she's an expert in the field on caring for our LO's with ALZ & Dementia. You'll see lots of examples and get much insight into this world as
caregiver. It's helped me to understand what our LO's are going thru, how we can help them and how we can cope. This forum is also an excellent source of support as well.
Best Wishes.