Newbie - need help/advice

ckube

Hi everyone and thank you for letting me join you.  I am going to try to keep this a short as a can, but it is quite a situation I have found myself in.

My mother and father are 86/84 and were living out of state for many years.  When the pandemic set in I recommended to them that they stay there (more rural area - less contact with others, etc).  We knew my dad was having memory issues - possibly vascular dementia but mom was taking care of him and they were both healthy physically.

In Oct '22 I got a call in the middle of the night from the police in the next state over from them.  They had been stopped on the road and appeared to be lost, confused, etc.  One quick roadtrip and laying down the law and they are now down here in their mobile home, about 10 minutes from me.

It has become hugely apparent that my mother is in mid-stage altzheimers and dad's memory is suffering even more.  I already had POA for both of them since a health scare back in 2018 so that was taken care of already, but overnight - quite literally - I became responsible for them, their residence here in Pinellas, a 20 acre property in NC along with horses, and a Queen Anne Victorian house. (oh yeah and my own home and family). They had a fair amount of money in the bank but it didn't take long to discover she had pretty much stopped paying all bills around Feb '22.  This included all the property taxes, home owner's insurance and the regular water, gas, etc.  I have gotten all of that back on track, rehomed the horses and that type of thing.  But they are now limited in actual funds.  

I need to be able to go back up to NC and ready the properties for sale, meet with attorneys and that type of thing, but I cannot be here taking care of them at the same time.  I need to be able to find some additional caregiver(s) to be able to step in for me while I can't be here for a week or so at a time.  Is that even a thing?  I know that they will soon need to be in a facility - which raises way more questions - but we can't afford it until I can get the properties sold.

Other random questions I have are:

1. do any of you have BOTH parents with dementia?  These two have been married for 66 years and where one goes, the other goes - but their differing forms of dementia don't.......work well together.....to say the least.

2. how does memory care - or even respite care - work when their are two of them?  Is everything doubled then?

3.  how do you deal with the overwhelm??

LadyTexan

Welcome ckube.

Those are excellent questions. You are in a good place to get answers and support. 

It can be incredibly overwhelming. If you have not done so already, I think talking with an attorney that specializes in elder law would be beneficial. An experienced elder law attorney can provide guidance on medicaid eligibility, rules and regs which may be important if you are concerned with the affordability of long term care. Different states have different rules and regs. In my experience, it is definitely not a do it yourself subject.

My parents are 85 and 83. Mom is moderate stage Alzheimers. Dad is now displaying some cognitive impairment. His symptoms may be depression related or he may be overwhelmed with my mom's care.

A home health agency should be able to provide care in your absence. I recommend interviewing a few and getting that ball moving soon.

Others will have more guidance regarding memory care. 

Take a deep breath. Blessings to you.

SusanB-dil

Hi ckube- welcome to 'here' but sorry for the reason.

LadyT has great advice there.   I just wanted to reiterate that you are certainly in the right place in our little corner.  There is also the 'solutions' tab above, and the alz 24/7 help line.  You sure have your hands full, and certainly all at once! Hang in there. Your folks are blessed to have you.

You are not alone. We stepped into some serious bill issues as well. Still dealing with the fallout of the mess. 

Do make sure they are not driving. Disabling the car and fiblets work. MIL got lost, and after we took her off the road, found out it was several times, then she also admitted that she came to an intersection and forgot what to do. Thankfully, nothing more serious happened, but we know a lot could have gone way wrong.  Although highly unusual, my mom took herself off the road. She realized she just shouldn't drive.  

Although totally different circumstances, yes, I have 2 LO, but not nearly as drastic circumstance you are suddenly being faced with.

M1

Welcome ckube here's a thought: with enough notice, some assisted living facilities offer respite stays. There might be a minimum time, but it might be worth inquiring at facilities near you. You could look at it as a "trial run" for potential placement and kill two birds with one stone, using that time to go to North Carolina and simultaneously finding out how they do in the new environment.  Im sure you'd need to talk to the directors to fully arrange, but it's definitely a thing.. Just a thought. Im sure it wouldn't be cheap but neither will home care. Might be worth the upfront expense. And you don't necessarily have to tell them the full story, just tell them it's a place to stay while you're gone.

ckube

The driving was taken care of for me (thank God) - the police impounded their car, took them to a medical facility for evaluation and then released them....an hour and a half away from their home.  So I was on the road - 10 hour drive - and had to arrange medical transportation to their home in NC and someone to meet them there since they would arrive before I did.

But at least by the time I got there they had no car and I refused (obviously) to take them back to Georgia to get it.  I did go up a couple weeks later and got it out of impound and parked it in the NC garage.....far away from them here in FL.

Afash

Hi everyone, 

I am new here. My mother has AD. She lives with me. She's still in the mild to moderate stages.  

I need suggestions on how to persuade an AD patient to bathe when they resist it and get agitated. There is no issue with her at this point. But I understand that these issues will arise.  Thank you. 

harshedbuzz

ckube wrote:

Hi and welcome. Kudos to you for the work you have already done to secure their safety in this situation. And thank you for sharing your story. So often, especially on the spouses board, a new poster will struggle with taking driving away insisting their LO will be fine locally on familiar roads or during daylight. Yours is the cautionary tale.  

Other random questions I have are:

1. do any of you have BOTH parents with dementia?  These two have been married for 66 years and where one goes, the other goes - but their differing forms of dementia don't.......work well together.....to say the least.

I don't have both parents with dementia, but there is at least one member here who writes about acting as POA for her mom and stepdad. I hope she pops in. 

I have heard of the bolder being a problem. I could see where it would be expected given that one of the earlier losses in dementia is the empathy which would help them be there emotionally for their partner when needed which is pretty much 24/7. Anogsognosia might be playing into this as well. Many PWD don't realize they've had a cognitive shift which means you can't reason or explain something that isn't their reality.

2. how does memory care - or even respite care - work when their are two of them?  Is everything doubled then?

It depends. Every facility is a bit different in pricing.

FWIW, I would be looking at places near you so you can easily get to them in an emergency. There comes a time when PWD is transported to the ER for some reason (a fall, UTI, behavioral disturbance) and you'll need to meet them there. SNFs and MCFs do not send staff with residents so your LO would be alone if you aren't there which is not good. 

It sounds like placement asap makes the most sense now. If they don't have liquid assests to make that happen, perhaps they could take a second mortgage on one of the properties to get them placed and then pay it off when you sell it. even if you think you might set them up in a smaller apartment or condo with 24/7 care at some point, a respite stay in a MCF would be your easiest option as you deal with their stuff. Most places that offer respite near me require at least a 30 day stay.

Now, pricing. Some CCRCs and MCFs have an inclusive price for MC and others have a base-price with add one for higher levels of care. There are 2 pieces to the cost of a facility- the room & board and the care. At dad's MCF, most of the rooms were private, but there were a few doubles. The per person cost in the shared room was a little less than in private rooms. If they tend to squabble or worse, a facility may not allow them to share a room. 

In some places, you might pay a little less for your mom if she's still in a stage where she is largely independent in her ADLs and a little more for dad if her needs are greater. 

Depending on your assets and ability to bring in care, this could work out. An in-law of mine set his mom and his wife's aunt up in a cottage he owned with 24/7 caregivers. They lived in amid an Amish community and were able to hire women who were reliable and capable at reasonable rates. That said, they did still have to maintain the cottage and cover the occasional sick day. 

Because you have 2 PWD, most private or agency HHAs will charge a higher rate for the care of 2 people but it won't be double unless it is determined that each of them needs their own HHA. After my mom's knee replacement, we brought in HHAs as a way to get dad used to having carers in the home. Mom didn't need their help, but the agency still charged for her being a "client". They also had a surcharge for "dementia care" that was a couple dollars extra an hour. 

3.  how do you deal with the overwhelm??

You make it as convenient for you as possible.

Move them near you. Place them in respite while you sort out their properties. Delegate what you can. 

When we cleared out my aunt's compound in Maine, we made a few passes to look for important paperwork, family items and money. I found $1000 in crisp Benjamins in a basket of dirt socks and my cousin found a pistol and bullets in a hollowed-out book titled "Best Practices in Secondary Education". Once we secured the valuables, we hired a man who cleans out estates. He pulled up with a crew and 3 trucks-- one for the dump, one for donations and one for his antique/curio business. If you parents have some nice things that may be saleable, this could be an option. There are also outfits like MaxSold that host consignment online auctions.

Be sure to find the best available real estate professionals. I oversaw the sale of my parents' 2 homes. My mom went with a friend-of-a-friend for the house in MD and it was ghastly. The FOAF turfed us to one of her underlings who was a blithering idiot who kept offering to help by offering to take tools, furniture and such "off our hands". I selected a better team in FL-- these folks did everything for me in the process of renting/selling the house. I had 3 appliances die while it was listed, and the Realtor took delivery of the appliances and oversaw the installations and even ran to the hardware store for parts once. They boxed up the personal belongings ahead of renting, so when I went down to arrange shipping of a few family pieces, clothing and their car most of the work was already done. Seriously, they did most of the heavy lifting on the FL sale. Depending on the area, you may be able to sell turn-key in FL. We did which was so much easier than deciding what to do with yet another couch.

BTW, winter in FL is a great time to rent seasonally while you figure out next steps. I was even offered a few year round tenants but didn't want to do that. 

Good luck.

HB

Beauchene105

Hi, this is a good place to seek help and opinions. Take what suggestions you can use, and do what your gut instinct tells you to do.  Suzzin, who added to her post Wednesday 1/18 referring to "that middle ground between AL in memory care", seems to have some of the same issues as you in dealing with how to proceed with two parents. Hang in there.

MN Chickadee

Yes some Al/MC facilities offer respite care. There is often a minimum number of days, like 10-14 days but it sounds like you would need a good chunk of time to address the logistics anyway. Your local chapter of the Alzheimers Association and/or the county's senior help line may have some ideas of which places offer respite (most counties have an agency on aging or council on aging with a hotline you can call.) Many people on these boards have utilized respite care, it is definitely a thing. 

Meet with an elder law attorney asap. One who specializes in estate planning, long term care medicaid, and all things elder law. They will help make sure all legalities are in order and they can also help with financial planning for their long term care. This is particularly important when there is a spouse and/or real estate involved. I would get good legal advice before selling anything. If money is dwindling your parents will need long term care Medicaid to pick up the bill eventually and the attorney can counsel you on that process (and find out the rules for both their state and yours) and the best way to spend down and when to apply. 

I would echo that you need to tour and choose a facility close to your home. As they progress you will need to be close by. There will be calls to come at all hours of the day and night, things just happen with dementia. Despite my mother being relatively young and healthy and mobile going into this Alz journey, I had to meet the ambulance countless times at the hospital. The Alz led my mother to have falls and seizures and the facility has their protocol - send them to the ER to be evaluated. Imagine a PWD in an ER bed (or these days quite possibly in a hallway waiting for a bed) who can't advocate for themself, can't provide their personal info or medical history or make decisions and the family member is 10 hours away - not good for anyone. It is also hard to oversee care the facility staff are providing and ensure good care if you are not visiting routinely. Some facilities may be able to accommodate them together, or it's possible you may need to have them in separate rooms or even different facilities. My mother's facility had a couple units that were married couples. It's possible that with the right level of structure and support they would do ok in the same unit, but I can see how trying to survive on their own they would just feed off each other's issues. 

You have so much on your plate, of course it is overwhelming. Try to break it down into pieces and take it one day at a time. Today you research respite options and call an attorney. Another day you call MC facilities to narrow down which ones to tour for long term care. One day you tour them. If you have any friends or family offering to  help perhaps they can help with calls and research. Another day you find a realtor. Etcetera. Taking a leave from your work to have some time to only focus on this transition may help if that is a possbility, FMLA would cover it. Hang in there and let us know how things go. Good luck. 

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Regina312

Welcome.  You are definitely not alone here.  We have all been affected by this terrible disease in some way or another.  This forum will provide you with both answers and comfort.  My Mom passed in 2015, but I am still part of this group because sometimes I can offer guidance and suggestions.  Paying it forward so to speak.  So many people helped me thru my tough times.  I want to do the same for others. The advice from everyone here to obtain an Attorney is the best thing you can do to protect you and your parents.  My Mom had a piece of property out of state and I worked with an Attorney to clean all that up and have her name removed on the deed and my name added.  It took months, but it was all favorable.  I cannot assist you further with your particular situation, but I can tell you that the feeling of being overwhelmed is very normal.  So much to do, and every day seems to bring about a new challenge.  What works one day may not work the next, so don't give up, and try not to get too frustrated.  It is difficult.  Far more difficult than most people can imagine.  I wish you all the best.