In-home care advice needed - first post

Solace

My 78yo father is in the middle stages of Alz/dementia. He’s undiagnosed at the moment but my sibs and I are planning to bring him to his neurologist for a diagnosis in the near future. About 5 months ago, his previous neuro didn’t think he needed a diagnosis yet. But here we are: depression, irritability, dressing, grooming, bathing, bowel, memory issues, doesn’t want to do anything but sit in front of the tv all day. He now regularly will sit alone in his chair without the tv on and when I call him he says he’s contemplating, sitting with his thoughts. Oh, and just this weekend he started having hallucinations. He lives with a good friend who is his main caregiver and one of my sibs lives about 40 minutes away and visits him a couple times a week. I live in another state and don’t visit often. His friend works part time and is out of the house for 8 hours at a time, a couple days a week. This has been fine up until now but we believe he’s progressed to the point where he needs some in-home care while his friend is working. In reading the alz.org ‘types of in-home services’, I think he could really use Personal Care Services (bathing, dressing, toileting, eating, exercising…) for a few hours, a couple days a week. We have another friend (professional caregiver) who comes to hang out with him one day a week which has gone well except for the time when he found out that we’re paying them. He complained that he ‘doesn’t need a babysitter’. Thankfully he forgot about that when the next week came around. My question is this: How do we go about getting this care for our father? Is this something that his doctor prescribes and insurance should cover? He’s a retired gov’t employee and has health insurance (included with his pension) as well as Medicare. I’m assuming that we first need to get him properly diagnosed but am not sure of the next steps. Thankfully he set up POA & HCPOA years ago so we’re all set legally.

This is my first post here. I’ve been lurking on this forum for about a year and have found some very helpful information. Thank you all so much!

M1

Welcome to the forum Solace.  Glad you have your legal ducks in a row.

Sounds like he may not be safe to be alone while his friend/caregiver is working, have you discussed this with him/her (the caregiver I mean)?  I'm just wondering whether the friend/caregiver is going to have conflicts with you guys if you hold the POA, because it sounds like some major decisions are probably in the offing.   Or to put it another way, whoever does hold the POA is going to have to take some major steps here.  Could he handle a fire emergency?  A plumbing emergency?  Would he know how to call 911?  Is he at risk for leaving the stove on?  These are all things you need to think about before he stays alone.  If he's hallucinating, he almost certainly has more advanced disease than you are giving him credit for--and I don't mean that critically, we all tend to underestimate the disease advancement in our loved ones.  But safety has to drive the decision-making.

Unfortunately you may be in for a rude shock--Medicare and health insurance does not cover in-home personal care services or long-term care, should he need institutionalization.  You may need to have a conference with all the involved parties about what you/he can afford, and how to plan financially and otherwise:  a certified elder law attorney can help with this; there are state by state regulations about how to qualify for Medicaid, if he needs to, which is the default/backup system in this country to pay for institutional care if you can't pay out of pocket or don't have long-term care insurance.  Some states have waiver programs that cover some in-home care in order to keep people at home (but these are generally estate recovery programs, meaning they require a spend-down and will expect payback of a certain proportion of the costs after death).  If he's a veteran, there may be some benefits there, too (and there are links on this forum about how to find those).

Good luck, there are lots of experienced caregivers here and you've come to a good place to learn and find support.  Read a lot of threads, there is good information to be had.

NuttyProfessor

This is a wonderful setup!  Care from a roommate & friend?  Wow that is seriously ideal.  You are way ahead of the game here.

Unfortunately, Alzheimer's care is a completely DIY affair.  There is no help from any resource except your own pocket and legwork.  It's really a horrid situation, but...we are all going through it. 

You have actually had a relatively easy time getting your father to accept care.  There was a period where my mom was calling the police every night, and she still throws the aide out of the house for an hour or two most days.  The aide goes to a nearby Starbucks, watching her on Ring cameras using the phone app, and returns an hour later with a blueberry muffin.  By then, my mother has calmed down and greets her happily.  In between, whenever my mother calls me and starts on her "I don't need an aide and I want her out of the house now" jags, I either don't answer the phone or I tell her "Of course Mom.  She'll leave tomorrow."  Don't try to argue or tell your dad he needs the help, it will only escalate the situation.

You didn't discuss your father's financial resources, but it sounds like paying for care could be problematic.   What's his situation?

I'd suggest adding care a step at a time, to minimize resistance.  Definitely continue with the caregiver friend as long as that person is willing.  Adult day care might be an option, and would have the benefit of some socialization and intellectual stimulation, plus they can take care of things like haircuts.   It's cheaper than a private aide.  After that...yes, you're looking at finding and paying a private aide to patch the remaining gaps.   Maybe the caregiver friend knows someone?

Another option is to set up cameras to allow the friends and you to monitor your father remotely.  If he's generally ok in the house by himself during the day, that may be all you need for a while.  I got Ring cameras, but I have started to research remote caregiving options.  There's a local company here who will set up sensors, send reports on activity patterns, and can intervene via remote video hookup and/or notify emergency contacts if something happens.  Given the ever escalating costs of in home care and the incredible degree of resistance to care that a lot of these patients have, I think this is a very promising and hopefully increasingly available option.

Solace

M1 & NuttyProfessor, thank you so much for your responses.

Thankfully we’re all in agreement that he needs some form of care while his caregiver is not at home. I don’t think he needs someone 100% of the time yet as I do think he can still function in an emergency. I believe he’d be able to call 911. He’s called me when he can’t figure out how to turn the tv on, we even video chat through his phone to figure it out. He doesn’t cook or drive anymore and has pain issues when he walks so (hopefully) he won’t be roaming around much. I do understand that even though he may not need 24/7 care at the moment, that time may come real soon. We also understand that we should have come up with a care plan earlier but, we’re here now and want to do whatever we can to make sure that the rest of my dad’s life is as comfortable and meaningful as possible.

I have the POA and have taken over his finances, and my sibs and I share HCPOA and we’ve all agreed on how to proceed so far. Of course it’s upsetting to realize that insurance won’t cover in-home personal care services. My father does have some savings that could cover costs for a while but we won’t really know for how long until we get some hard numbers on exactly how much it will cost. And costs will grow as his condition deteriorates. We have a lot of planning/research to do.

We have been working with an elder-care attorney who has been very helpful so far but we’re somewhat hesitant to ask too many questions since time=$.

Getting our father to agree on further care isn’t going to be an easy road. He can be very stubborn (always has been) and has never been the type to ask for any kind of help. We’ll probably have to tell him that his insurance will cover all costs. Otherwise he’ll refuse any help knowing that it’s coming from his or our pocket.

We have some cameras set up outside the house to keep an eye on any movement. Do you have cams set up inside the house? I’d feel like I was spying on him and his caregiver but that’s something we’ll definitely look into. I do like the idea of being able to just check in to see where he is / how he’s doing.

Thank you again!

NuttyProfessor

Yes if you're going to use in-home cameras you absolutely will need the consent of both caregivers.  Fortunately, the aides I've worked with have not only not minded the cameras, they thought it was a great idea.

The Ring system is nice because you can share the camera videos with the caregivers, and the motion detection works pretty well.   And it's cheap, $30 per camera per year.

Your dad sounds like he's where my mother was a year ago, before she fell and broke her arm and pelvis.  She was so with it at the time that she called the police herself after falling, and told them exactly how to get into her car via the combination lock and then open the garage door with the electric opener.   She was still driving to nearby, very familiar places (only), but only got prepared foods because she could no longer cook.   And at that time, she was living alone and absolutely refused to hire any kind of help.  I tried to suggest a housekeeper/cook but even that didn't fly.  I used the cameras to look in on her, and it's good to know that if my mom hadn't been able to get help herself I would have spotted her on the bedroom floor before too long.  But, I definitely would have preferred it if someone had been coming to the house every day.

What about Meals on Wheels?  I didn't think of that at the time, but it would have been a perfect stopgap.  The person who delivers the meals will stop by and spend a little time with the person.

I know a lot of people automatically say that a person with dementia should never be alone, but it's really not so black and white.  Depends on the person.  My mother is well into middle stage now, and she still needs her "alone" time, as she always has.   That has to be respected (and respecting it certainly helps minimize temper tantrums/blowups), but it's good that remote monitoring is available for safety.

Another technological wonder to consider:  an Apple iWatch.  If your dad will wear it, it has built-in fall detection and will call 911 automatically.

ButterflyWings

Solace wrote:

 I don’t think he needs someone 100% of the time yet as I do think he can still function in an emergency. I believe he’d be able to call 911. He’s called me when he can’t figure out how to turn the tv on, we even video chat through his phone to figure it out. ...he may not need 24/7 care at the moment, that time may come real soon. 

Welcome to our group - though we always say we wish no one needed it.  Solace I hope you are right about guessing about his competence in these life or death situations. But it is best to confirm if you can somehow test your theory before a real emergency pops up. My DH had not cooked or even attempted to in over a year (almost 3 actually). Until last month when he suddenly took it upon himself to turn on a burner - and attempt to heat up a bit of coffee from the coffee maker (I can only guess that he couldn't recall how to press the "on" button on the coffeemaker -- and I always unplug everything after I use it). But literally less than 10 minutes on his own in the kitchen, and he had melted the handle and 1/2 of the lid from the little pot, and it left a sizzling hot pool of lava like substance on the burner, with a horrible chemical odor. And I was just in the next room though occupied as I rarely am when he is awake.

Anyway, we often suggest to please observe him closely for a 3-4 day overnight period to get a true picture of what may or may not be happening. And then, know that can change immediately anyway. That's dementia. Sorry to say. Based on what he can't do per your report above, I'd be very worried about leaving him alone for even 1 hour at this point. 

Last point, please be sure you have a DPOA - durable POA, not just a regular one which becomes invalid once he becomes incompetent. (I never understood that -- it is exactly when the POA is most needed, but that's why a CELA is recommended in these situations.)

Wishing you well despite the circumstances. You are in good company here.

Cm0508

I am an in home caretaker for my mom 87 years old I retired this year to do it…I have my two brothers that are very supportive and helpful. She is in middle to late stages. Sundowning, seeing things not there. Memory of places and things some people.Balance is really getting bad. Her combativeness is getting worse.I have accepted she has this and  pretty much not my mom and best friend she use to be. Which makes me sad, she is my mom I love her with all my heart. And I will take care of her the best I can till the end. Which I know is going to get much worse This has been the hardest job I have ever had to do.

So I joined her to read and get some support on those days when I feel like I am going crazy. And need and place to vent.

Thanks 

idgsajs

harshedbuzz

Solace-

This is a situation that is somewhat unusual and could be fraught with complicated issues. You have left a lot unspoken that could have major implications for how this situation evolves as your father's disease progresses. This kind of situation is discussed here from time to time and it seldom goes well. 

FTR, my aunt lived with a "friend" for a time in the early mid-stages of the disease just before she was diagnosed. It was about six months. She was a widow with no kids who lived a distance from her elderly siblings who mostly had significant health issues themselves. I used quotes because this woman was kind of my aunt's frenemy-- their husbands had been life-long friends while they went along for the ride. This worked out for a time because the other woman had dementia as well and was being cared for by a niece who liked her aunt and I think kind of thought she'd get the property (4 oceanfront acres) for helping. Prior to that the pair of them were like some sort of Thelma and Louise with dementia terrorizes their small town in a massive Buick. A sister obtained guardianship each woman and both families determined it was time for MC for their prospective sisters as the other woman's Alzheimer's was progressing faster. 

The friend? What is the nature of this relationship? You managed to avoid the use of pronouns-- is the friend a man or a woman? Is this relationship of a romantic nature? Could it be a marriage-in-all-but-name? 

It is highly unusual for a PWD to be cared for long term by a friend if there are adult children, siblings or even a niece/nephew in the picture. This might work for a time, usually until around the point the PWD begins with incontinence and requiring 24/7 care that can lead to the friend becoming isolated and overwhelmed. 

Sometimes when a PWD is in the care of a friend, that friend uses it as an opportunity to informally extract some kind of compensation for the care they are giving-- signing over property, having the PWD pay for meals out, improvements to the home and vacations or such. Often, the caregiver feels somewhat justifiably entitled given that they are doing the work normally deemed to be the responsibility of family.

Someone in the family needs to do a deep dive into dad's assets and make sure he hasn't done anything that may impact his ability to access care as he needs it. Medicaid is the safety net for those who cannot afford care once they have spend down their assets. The rules applying to a Five-Year-Lookback are quite specific and draconian. You probably want to lock down dad's credit to prevent him signing for loans and such if you have not already. 

A visit to a CELA to be certain the POAs you have are appropriate to the situation and discuss Medicaid planning and Veterans Benefits (if that applies) would be helpful.

Do they rent their home or does one of them own it or do they own it jointly? If he owns, and the friend does not, you could run into some landlord-tenant issues should you need to sell the home out from under him. This can sometimes get ugly depending on the relationship and character of the friend. 

As for the separate issue of whether dad is still save home alone. He might be. He might not. My mom certainly believed dad was OK for a couple hours when he really wasn't. She had an appointment once and asked me to stay at the house as she was having a HVAC system installed. Her concern was that dad would interfere in someway, so I was there to answer their questions. While dad and I were visiting, they soldered a pipe which set off the smoke detector-- they yelled down to explain what happened. About 30 seconds later dad asked what the horrible racket was. I explained and he sat there for another 20-30 seconds before slowly rising and toddling off to find my mother as he forgot she wasn't home. At no point did he call 911 or ask me to. We never left him alone again.

Good luck. This is difficult stuff.

HB

Joydean

Solace, I hope you will take the advice you have been given seriously. People with Alzheimer’s/dementia their brain can not react as you may think if an emergency should happen. Cameras are nice but could you get to him in a matter of seconds? We are all going through this terrible time and we learn something new every day. Just when you think you are handling it surprises always jump up to bite. From what you have said your dad should not be left alone for any period of time. I wish you and none of us had to go through this but as an old saying goes we have to go with the hand we are delt. Best of luck to you and your family.

Rescue mom

Solace, we all differ in our comfort with risk, and in how we decide about leaving the PWD alone for long.

I certainly did leave mine alone for a few hours….he could make phone calls on his own, he knew and demonstrated 911 abilities, when others were around.  So here’s what happened with us:

I came home after being out about 90 minutes, and found ankle-deep water in our kitchen (broken pipes). When I screamed, he walked up and said “I saw water on the floor.” And pouring down an interior wall. Big repairs and appliance replacement. Repairmen thought it must have been broken/running at least an hour to collect so much. But he didn’t call me, nor think much about it at all.

Once while cooking, I took a quick (I thought)  bathroom break. I always turned off all heat if I left the room, but this time I forgot. There was an oven fire, blazing flames up the cabinets, smoke detector going off. DH just looked at it. No reaction, no yell to me, nothing.

A couple years ago, firemen were called to a nearby house by neighbors who saw flames and smoke from windows. When firemen got there, the man (with Alzheimer’s) was calmly sitting in his chair across the room, watching it burn. After getting him out ok,  neighbors told firefighters to check about wife—he never mentioned her. She was apparently sleeping in another room, and died there.

News reports said it burned for a while before being seen, and grieving family said they thought he knew how to call for help. (Much the same reaction seen on news about car accidents caused by a PWD. They always show family saying “but he always seemed like he could drive just to there.”)

It’s just really hard to say what they will do in emergency—plus, the disease gets worse as time passes. Maybe we take the risk, but we should know things happen, and a dementia brains reactions are hard to predict.

Hallucinations are a whole nother thing.

Stuck in the middle

The trouble with AD is, it is progressive and worsens in fits and starts.  Just because my wife could do something yesterday doesn't mean I can count on that today.  The A/C was broken at the diner this evening and it was hot.  DW said "I wish I had a mandolin."  At my blank look, she waved her hand in a fanning motion and I knew she meant a fan.  First time for that.  And tomorrow is a new day.

mommyandme (m&m)

Get cameras! Not sure on needing caregiver permission for them unless they’d quit because of them.  I guess you wouldn’t want a caregiver that’d quit due to transparency anyway. I suppose some states may have rules, I have no clue there.  When the service came in for our initial consult I just told them “we have cameras”. I advise each new caregiver that walks in along with hospice or any other newbie.  I’ve not asked in other words. 

Cameras have been invaluable for us.  We were able to start 24/7 virtual supervision because of them, per her neurologist.  Now still use them even though she’s been with personal 24/7 supervision/care for three years.  The cameras do not need to be expensive either.  We don’t have them in the bathrooms for obvious reasons.  

As far as your LOs ability in an emergency, we cannot predict which brain waves are firing or burping at any given time.  The remote could be mistaken for a phone.  Your LO could freeze from fear or confusion or for no reason.  I just wouldn’t assume calling 911 would be successful.  Having said that, we did leave mom alone in her home over night and in the middle of the day.  Even though she had neighbors looking out for her, we probably just missed a catastrophe.  After all she did put a paper plate in the toaster oven. 

Positive thoughts being sent your way!