No POA - Options?

wtxman

 I'll try to be brief.  MIL has dementia. We got a diagnosis in Feb. via MRI. She wouldn't stay in to narrow it down as to what kind of dementia, but we do know she had a stroke at some time. She has been showing signs for a number of year prior, but it wasn't affecting her life much. repeating stories during the same conversation etc.

 now, however it is very noticeable. we took over her bills about January or February and automated everything. She doesn't have a POA, directives or a will and wouldn't get them. Now we don't think she would be competent to sign.,

 she lives alone in our town, and we do what we can. ordering groceries for delivery, re-filling prescriptions and trying to calm her down.

•  She calls 20+ times per day and texts at least as many times. Highly agitated when she calls but usually gets better toward the end. Rinse / Repeat.
•  Can't remember what town she is in.
•  Doesn't know she owns her house of 14 years and will argue about it.
•  She has lost a lot of weight despite doctor telling her not to lose any more. Obviously forgets to eat.
•  We worry she is not taking her medicine correctly.
•  Wants to go home all the time.
•  Sees things like lots of people have visited and has lots of dogs. sometimes she has lost her dogs. She only has two but thinks she has more. Once talked to her dead mother sitting on her bed.
•  Forgets things you just told her.
• Finally, tonight having trouble knowing who my wife (her daughter is) refers to her by name like “Jane called me” when she is talking to Jane (not real name)

 In her lucid moments she knows what is happening, but has refused to have help come in and absolutely does not want to "be locked up"

 We are looking for ideas. we think she needs help of some kind; we work full time and cannot look after her 24/7.  We feel there isn't much choice but to wait for a crisis, but we feel guilty and conflicted like we need to do something.

 Ideas would be appreciated.

 

Iris L.

Welcome, wtxman.  Others will come along with great suggestions.  Please read about anosognosia.  She is not aware of how much she is slipping.  You will have to use work-arounds to get things done.  Also, rehome the two dogs.  She cannot care for them properly.  She should not be living alone.

Iris L.

​fesk

wtxman - I am sorry you all are going through this. I am sure others will respond with helpful advice.

I agree with Iris L. that she should not be living alone. It is not safe. You mentioned you are not sure she is taking her medication correctly. Is she on any medication to help with these symptoms? Are you, your wife or someone else able to monitor her medication? 

It seems from your description that the time has passed to get powers of attorney in place. I recommend speaking with an elder law attorney to confirm and to see about guardianship or what other options might be available so you can arrange the care she needs.

wtxman

Thanks Fesk,

WE check her meds when we are there and refill the pill minder but it isn't always right. we were going to try an automated dispenser, but with the difficulty with new things it didn't seem she would be able to adapt to it.

We really think she needs someone making sure she is taking it right, but it would require someone coming in daily in the morning.  that seems like a good solution except for the cost. she could afford it if i was able to restructure her finances and i don't have the power.

it seems like we are kind of trapped into trying to get guardianship, but i have see that could cost thousands. idk

wtxman

Thanks iris,

you are right, of course. perhaps WE are a bit in denial about what needs to be done. To do what needs to be done it feels like we need guardianship to restructure finance and at the least get someone in to help everyday. otherwise we are looking at MC.

this is such a difficult lonely place to be as a LO. DW and i are "fixers" and this is something that can't be fixed.

harshedbuzz

wtxman-

I am sorry for your need to be here, but glad you knocked on the door of our little club house.

Your hair is on fire. Your MIL's dementia has clearly progressed to a degree that she needs 24/7 supervision. Many of the behaviors you mention- no longer oriented to place (doesn't know her town or home of 14 years), doesn't recognize her daughter, isn't eating, and "wanting to go home"- are typically late-stage manifestations of dementia. If you aren't seeing sleep disturbances and incontinence, you will soon.

This outline may help you understand where she is vis a vis disease progression. This is written specifically for Alzheimer's, but can apply a bit more generally to other forms of dementia especially in the later stages. Given previous evidence of stroke, it is likely there is some vascular dementia in the mix (many PWD have more than one kind with VD and Alz being the most common combination). This matters because VD often progresses in a series of plateaus and sudden loss of abilities vs Alz which can be more gradual which adds a layer of urgency to planning for care needs. 

Stages of Dementia Dr. Tam Cummings

To my ear, she sounds roughly stage 5 which would give her the abilities of a child between 4-12. You wouldn't leave a child that age unattended for very long. 

I would see a CELA about gaining control of the situation. You can find one here-

National Elder Law Foundation (nelf.org)

If she was deemed competent to sign, you might be able to manage that. It's quicker and considerably less expensive than obtaining guardianship or conservatorship. Many CELAs are absolute wizards at selling the notion of a POA to elders. If not, guardianship is an option. My aunt and a friend of mine had to take this route which goes through the courts, but in both cases it was more of a formality. BTW, the assets of the PWD pay for this if you obtain guardianship. My friend's father fought him mightily-- even hiring his own lawyer-- but the court ordered neuropsych evaluation highlighted the need for someone else to take the wheel. 

One concern I would have is that your mom's condition- the dementia and weigh loss- are on the radar of the physician as mandatory reporter- medically that weight loss could be construed as "failure to thrive" or malnutrition and trigger an APS visit. If she's not eating well, she could be missing essential nutrients which could further exacerbate her behaviors. 

I could also see a problem if she's out among her neighbors and giving off a vibe that she's not safe at home alone. If they're concerned and don't see you taking steps proactively to keep her safe, they could also trigger APS involvement.

I get that she doesn't want to be "locked up" or have care in the home, but dementia has already robbed her of that option. Basically, you have 3 options here. 

You could move her into your home to provide some oversight while introducing HHAs to give you respite and allow you to live your own lives. This might allow her to keep the dogs for a time as you could take on their care. 

If she has LTC insurance or plenty of assets, you might be able to do care in her home either with a live-in or shift workers. Alas, this is an expensive option and more challenging in COVID-times. Agency workers start at about $30/hr, privately hired can be more reasonable but you'd have to arrange the payroll and tax situation. 

A MCF is the other option. There are a few that might allow the dogs so long as she is capable of caring for them. 

This is all sad and difficult. And it's really hard to insert yourself into every aspect of a parent's life and take over, but the time is past for you to do that.

This was a good read for me-

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Try to remember that you are doing this for her-- not to her. Dementia is what is robbing her of her autonomy-- not you.

HB

wtxman

Thanks so much HB!

I needed to hear what you said. The "hair on fire" made it clear that we are maybe getting lost in the moment and need to look at the bigger picture. This is exactly what I was hoping I would get here, the benefit of people who have been here and can see it more clearly from a distance.

Iris L.

wtxman wrote:

  DW and i are "fixers" and this is something that can't be fixed.

The disease cannot be fixed, but the situation can be fixed.  This is in the steps that you would take to manage things, as HB has outlined and as you have probably already figured out.

I'm serious about the dogs.  There are many threads on pets of PWDs.  They may love their pets, but they just can no longer take proper care, and the animals suffer.  There are also many threads on how PWDs often do better in a facility, due to the structure and socialization on their level and supervision.

The members here know what they are talking about.  Read lots of threads.

Iris

jfkoc

The diagnosis is difficult...al you can do is to make certain the proper protocols were followed.

The big picture means DPOA, wills, trusts etc. This calls for hiring an attorney, CELA if possible. It will be up to an attorney to make the decision if they want to witness the document.

Then you get all financial matters in hand.

At the same time you strive for safety and find your Plan B.

We are here to share all we know and to be by your side as you make this walk. 

CatsWithHandsAreTrouble

Hi wixman. You've gotten a lot of good info and I'd like to add one other thing to think about or to add it to your "tool kit" of caregiving. 

If your mil is very attached to the dogs and she cannot keep them, you're unable to, they're not allowed, however it comes up, you'll have to figure out how to handle that loss to her. Do try to not tell her they're going away because they can't be cared for. That'll only upset and agitate her. I have seen other people get lookalikes in forms of toys. She might resist the decoy at first but she might grow accustomed to them eventually. Maybe introduce the lookalikes before the dogs go to a their new home so if she's aware enough the change between real and decoy won't be as jarring.

We recently lost our childhood cat of 19 years. Mom still has some recollection of the cat and occasionally asks for her. Thankfully we still have another cat that she absolutely loves so we redirect her to the second cat and distract her with something else. We're twins so if mom says "where's the other cat?" we pull a quote from a story she told us about a neighbor when we were young. "Which one's this one? Where's the other one?" She laughs and reminisces back in time 30 years. She also has two stuffed dogs that we use to redirect her if needed. 

Hopefully you can get things going well and maybe the dogs can stay with your mil longer. Best wishes!