As a side note, for those who are veterans, if you own property or have a decent amount of cash put it in a trust. The VA offered a caretaker for my grandfather/grandmother but in order to qualify they would have had to spend every last dollar they had, leaving no money for food or other expenses. And if their homes weren't in a trust, they would have had to sell those too.

Thanks all.

I am fortunate that my mom (and perhaps my dad...or maybe her second husband) thought of a lot of that. She has a good friend (who is local) named in a General Power of Attorney. She also has a Medical Power of Attorney and a living will. Lastly, she also has a long-term health care insurance plan.

Oh, and the second husband was a retired Navy Chaplain so she also has some sort of thing through Tricare for Life.

She was discharged today. I did talk to a social services lady, someone is coming out tomorrow to start an evaluation. The doc I talked to said that she had early onset dementia and should be fine if someone checked in on her, made sure she takes her meds and eats her meals. She was eating like she was starving while in the hospital. The RN also slipped in some paperwork about a ministroke?
TEsomething?

Once we got home she used the bathroom (door wide open, I unfortunately walked past), no doubt full from all the food. I sat in the kitchen. Heard a lot of splashing, assumed she was showering. After a while I heard her walk off. I went to check.....she'd somehow clogged the toilet and flushed it repeatedly. Then apparently went, showered in another bathroom and went to bed.

I cleaned up what I could in the bathroom. No seal around the base of the toilet that I could see and it was on the 2nd floor. Mom said she was clean, and was rapidly falling asleep. I was just numb. Still am. Going to call her PCP tomorrow, see about getting that second opinion. I'm also supposed to call the neurologist to set up an appointment.

Please pay attention to what dsmack wrote.
If the power of attorney is with a friend, that almost certainly needs to be changed if she is going to be in your care.
I recommend you call an estate planning attorney and see what can be done. May have to go to court and have the friend relinquish the POA, but I am not an attorney. Just have dealt with it as son and trustee of my Mom's trust. She had enough sense to know she was no longer able to make decision for herself, we got an attorney and had everything set up in time for me to do all financial, health care, and legal decision-making.
Among other things, you don't want a family home lost to the state because of use of Medicaid--an estate planning attorney can help you set up a trust.

I am very sorry to hear this. We went through the same thing with both my parents and with my MIL. It is heartbreaking. What dsmack wrote is spot on. I also recommend the book The 36 Hour Day to help you understand what is happening and prepare you to handle it; I saw a previous posted also recommended it. My prayers are with you. In addition to the other advice, try to maintain a sense of humor if you can. In my family we used the whole situation as a way to bring the siblings closer together rather than to drive a wedge between us, and that was one silver lining. God bless.

Allen... I was encouraged to read this morning that your Mother had the foresight to purchase a Long Term Health Care policy!!! That is going to prove to be one of the best decisions she has ever made, believe me!

My Ex about whom I wrote earlier made the same wonderful decision 14 years ago. The only reason I was aware of it was that each year she complained about having to pay the annual premium, which went up each year. The latest annual payment was in the neighborhood of $3500.00.

Fortunately, when she purchased the policy, she also stepped up and bought the riders that provide additional benefits above and beyond the basic 60 month annuity payout period. The facility in which she lives now in a one bedroom apartment, with provided meals, housekeeping, medical services of an RN, Med Techs to dispense the myriad of meds on time, etc., costs $4350.00 per month. In the 12 months she has been a resident, she has recouped over thirteen times the total amount of premiums she had paid in over the years!!

The additional rider benefits I mentioned are going to extend the period of time those payouts will continue, well past the original 60 month time frame. Another rider stipulates that upon payment of the first benefit the requirement for additional premiums ceases also, for another $3500 - $4000 saved each year!

For any youngsters reading along here today, I cannot recommend anything else that will provide the level of comfort that a good Long Term Health Care policy will provide... When the loved one becomes ill, there are enough problems to face and try to ameliorate, but having the secure knowledge that finances won't be a problem... PRICELESS!

I don't want this to turn into a commercial for a particular company providing said policies, but feel free to drop me an e-mail if you need or want more information. I can provide you with an overview, and the phone number of the most helpful person I have worked with during the stressful last year. She is an absolute marvel, and absolutely low key.

My e-mail is in my profile if interested.
Don

Aside from what others have said medically and emotionally (fwiw, my mom has a trusted internist and a neurologist) consult with a banker or financial advisor or attorney that you know. The banker and financial advisor will be chaeper (i.e., free) and get some ideas on how you can move to get things structured to help her care for her finances while she is living and using them as well as for when she’s passed and no longer in need of them. The bank and financial advisor will probably be of a greater help as to how things work and move in the financial industry. The lawyer will be required if there are other circumstances at hand and legal entities to create and supporting filings to make (conservatorship, etc).

And find a support group for yourself. Dementia is a nasty disease that affect those directly and others indirectly. It’s tough.

You have mail.

See an estate attorney ASAP! Honestly it should have been done a long time ago. My FIL is in a similar boat and has been dragging my MIL down with him. Second, explore all medical options you have for care including staying home. It only gets worse, never better. Eventually she will require 24x7 medical care. Sorry for the diagnosis, but those are the hard cold facts.

My mom had some strokes last year, lived through those somehow but has vascular dementia. Dad tried to take care of her at home, they're both 73, and after three weeks with my brothers help he was desperate for help. She requires care in a nursing home but they can't afford it. If it gets to that point consider an attorney capable of helping you with the Medicare/Medicaid system. She's still alive and still has a lot of her mind considering but her body is gone. Prayers for you all.

Sorry to hear. My mom had it. They can't be left alone.

I'm sorry for your mom. I think there interesting ideas being developed. Trying to get my mom on low carb but I would need to stay with her and cook for her.

https://universityhealthnews.c...all-dementia-stages/

My grandmother had dementia before she passed away (and Parkinsons). It is very very trying sometimes. Sometimes the person won't know who you are, other times they will, the big thing is to always remain calm and always stay level headed and be honest, but only give out some information if directly asked about it and only the truth.

quote:

I did talk to a social services lady, someone is coming out tomorrow to start an evaluation. The doc I talked to said that she had early onset dementia and should be fine if someone checked in on her, made sure she takes her meds and eats her meals. She was eating like she was starving while in the hospital. The RN also slipped in some paperwork about a ministroke?
TEsomething?

Transient Ischemic Attack (TIA)

It might not be that your mom didn't like the hospital food (though, who really does like institutional goo), she probably wasn't eating well prior to that.

My mother-in-law is developing some early symptoms as well. And anytime she goes out to eat, she goes to town on the menu. She can buy and prepare all the food she wants, but she often doesn't want to go through the hassle of a meal, so, she'll eat cereal, toast and coffee. Salad lettuce will go bad, she won't replace it, she'll "eat the green parts" and leave the rest, no matter that it is rotting.

This is the beginning of a catch-all diagnosis of Elderly Failure to Thrive. Here's a better definition.

"Four syndromes are prevalent and predictive of adverse outcomes in persons who may have failure to thrive: (1) impaired physical function, (2) malnutrition, (3) depression, (4) and cognitive impairment.

A comprehensive initial assessment should include information about physical and psychologic health, functional ability, and socioenvironmental factors."

Talk to your mom's physician and/or social worker about a very thorough evaluation. I'm glad she has insurance and Tricare for life, because that will take the economic aspect of stress out of the equation.

As you can see with the toilet episode, there are going to be times when you get frustrated and angry, but remember it isn't her fault, it is the illness.

Some of my best times have been taking care of dementia patients. I had one special woman who was the sweetest, most precious person. Her memory wasn't good, she wasn't alert or oriented due to Alzheimers, but she would sing verses of the Israeli national anthem, Hatikvah; she was Jewish and had grown up in Hungary, so she had a wonderful accent. She loved to hold hands and when you called her name, she would say, "Yes, dear?"; and gave the most adorable answers to everyday questions. One of her favorite responses when I asked how she felt, 'vell, I feel normal' and then she would chuckle. And when I was helping her eat and had something like chocolate mousse, her eyes got really big and she'd say, "Mmmm, that vas good"

Yes, there will be changes in your relationship, but people with dementia still need to receive and give love. It isn't all negative, so try to focus not on who they were or what will happen, but on who they are now.

Good Luck and Take Care

Right now the thing is I'm worried sick over what might happen between now and when I can get whatever care lined up for her. As it is, some medical types are coming to check on her a couple of times a week. I'm gonna pay to have some in-home care Mon-Wed (so far). Of course, who knows what might happen during the night.

I'm having this huge internal argument with myself about whether I push for having her in a skilled care facility, and what's my justification. But I've heard from all three of her friends who've spent time with her since being discharged, the physical therapy evaluator, and the medical guy.....none of them think she should be on her own at all, especially in a mid-entry home. Still, I experiencing waves of self-loathing, guilt, etc. This is such a mindfuck. Running back and forth between her and work, then trying to get to my home to do the things there I need to do. I've dropped 6 pounds since last Saturday.

And sig2340, I may try to call today. Thanks a million for reaching out.

Allen~ Each of us who have been thrust into similar circumstances with a loved one know all too well the frustration and waves of self-loathing you are experiencing!

Consider the alternatives, however... If you leave her in her own home, she is surrounded with things which can hurt her: Stairs, stoves, toaster ovens, etc. The two most difficult things I've faced were taking her car keys when it became obvious that she was no longer capable, and deciding, after conversations with her Doctor, and our two sons, that the burned up toaster oven and delaminated and partially melted aluminum bottom on a stainless soup pot were telling us it was time for action.

The other factor that was major were the "Night Terrors" she had started to have. Panicky phone calls to me in the middle of the night when she was hearing people prowling in the house and talking about her, etc. It is amazing how quickly one can cover 11 miles between two residences at 3:00am!

It is a totally dynamic situation with a person suffering from dementia. I have seen her demeanor and abilities shift from pretty good to scary bad and back in the space of a few hours. It is, as was described, the disease and not the loved one, but that is terribly difficult to remember when it is falling apart around you!

I need to see what is available in my area for a support group. I am feeling the stress too much myself, so should not be giving out platitudes. Each of us must work out our own solutions I'm afraid.

I will keep you in my thoughts, and hope that you can see the advantages to getting your Mother the care that will help keep her safe and as comfortable as possible.

Take care of yourself!
Don

What you are feeling is only natural, but people with dementia aren't consistently capable of sound judgement. Like dsmack said, there will be signs that she isn't making good decisions. did she used to be neatnik and now the house looks messy? what is there for food in the fridge or cubbards? Does she do her laundry? Does she bathe regularly?

There is a variety of different levels of care, everything from a companion who can run errands and prepare meals all the way to acute care. It sounds like your mom is pretty independent still, so maybe just having somebody stay with her and see that she is safe is an option.

I forgot to mention sundowners. It's as if a switch is flipped and my mom goes from sometimes oriented to something akin to demonic possession or sheer terror or intense anger. It's the weirdest thing I mention it just to alert you to the possibility. My mom has said some of the worst things a son/daughter can hear from a parent and it's hard to keep it together through that. Might read on it. I pray it doesn't happen to you. Happened to my wife and daughter too before mom was hospitalized. We have to plan any time with her and my daughter around the sundowners.

Mom's behavior seems to be based a lot around her penchant for being organized. She always had a file for everything; recipes, bills, addresses, you name it.

She's been leaving Post-it notes, desk calendar pages, etc. with notes written all over them. She's been doing that for awhile. Her grocery lists were written in tiny, almost illegible handwriting on scraps of envelopes, etc. Granted, that's not too bad. I just assumed she was grabbing whatever.

This weekend she spent a lot of time staring at the channel list Suddenlink provided, her address book, and the clocks. She'd read of the time occasionally. I think if those weren't there, she'd have no idea of the date or what time of day it was.

She is using the toilet okay, aside from that first mishap, so far as I can tell, but I do not believe she is showering. She can dress herself to some degree, but spent all day yesterday in her nightdress. She takes up and puts down these rugs she has in the hallway. She wants to go and check on things, even in the garage. I had to reverse the doorknob on the interior door from the garage into the house proper because she tends to lock it. I want to replace the door handle on the main door but it's a strange size I can't find a direct swap for.

Ugh...she has an appointment this morning. I'm hoping (strange word for the situation) that the doc will recommend she have round-the-clock care in a facility.

Saddened by the terrible news, my friend. My few and possibly useless words to you are BE PREPARED. What comes ahead will be sad, exhausting and will stay with you forever.

My father was some sort of recognized genius in his field and his work and he changed the world. It was painful to see his character change and his inner light and life dimm the way it did. Will always regret not be capable of undererstand what he was going through and properly adapt to his situalion. Mood changes were unpredictable and caught us unprepared.
You will learn to be extremely patient, flexible and forgiving since youur mother will, at some point, be lost in her disease and reality will not be something recognizable the same way by all those involved.

Be careful, be patient and don't forget to love her every step of fhe way. My eyes just filled with tears so I will stop writing now.

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