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My 94 y/o mom was diagnosed with dementia about 18 months ago, although she has even steadily declining cognitively for several years. She has had about 6 TIA’s in the past two months. She lives independently in a senior living facility where two meals, cleaning and laundry are provided. Her social life revolves around the community meals. I have a video camera in her place where I can check in at any time. She’s still able to take her meds that I place in pill packs which she takes morning and evening. Mostly she is lucid and can carry on a conversation, other times its wash, rinse, repeat. Recently, she’s has been having very vivid dreams and cannot distinguish the dreams from reality. She has suffered from sundowning, hallucinations and some psychotic episodes in the past when hospitalized. Her latest thing is waking up at 3:30 in the morning, but then taking a long morning nap before lunch and a long afternoon nap before dinner - about 2 hours each. Then off to bed at 7:00. I know I will have to eventually take her in, but I’m not sure of the right time to do it. Pre-dementia, she has always said that she didn’t want to move in with me or my brother and I haven’t brought the subject up with her lately. With sundowning I fear the change, but then wonder if now would be better than waiting. I’ve read articles trying to put her at a stage, but her symptoms overlap. Any suggestions would be helpful. Thanks in advance.

"Right now she is too mentally aware of her surroundings to place her without resentment."

Does that mean you are leaving her in her senior living apartment? How much time do you spend taking care of there?

Why wouldn't there be resentment if you moved her in with you, since she has stated she does not want that? And you will then be looking at TWO moves -- to your home and then to a facility. Why not bypass the stay in your home and move her right to a facility? It will be easier on her, as it will be one less transition.
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You say your mother has made it 'expressly clear' that she does not want to go into a nursing home or live with any of her children. This statement is an oxy-moron. Since she is ALREADY in IL, I'd move her into a Memory Care AL right away. Dementia normally reaches a place where in-home care becomes wayyyyyyy too much of a burden, between incontinence issues, staying up all night, behavioral/argumentativeness, etc. Not to mention the dangers of living in a regular home are huge! You'd have to educate yourself thoroughly on what is REALLY involved with in home care for a demented person, and make your decision from there.

I work in a Memory Care home and can tell you this: The residents, for the most part, develop SO many terrible issues that sometimes WE can't even handle them! But we have teams of QMAPS and CNAs and nurses who are trained to do so. Activities and meals and snacks and diversions galore. They also get to socialize a lot, which your mother loves, and that is something you cannot provide her with in your home.

You have a lot to consider right now. If it were me, I would NEVER take my mother in. She has dementia also and has been living in AL since 2014, and moved into their Memory Care annex this past May. She has more issues than Newsweek and I STILL have a ton to deal with, even with her living outside of my home. I still need my own life in addition to handling a 93 year old woman's life. I deserve it, and so do you.

Best of luck!
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When my Mom got to this point, I took her in. She should not be alone. Hallucinations can be scary. My Mom, dreams and TV they became part of her reality.

I never brought Mom to my house with forever in mind. I was hoping her house would sell. Those proceeds and money she had would have kept her in an AL for the 2 years needed to switch to Medicaid. House didn't sell, so I placed her with the money she had. By the time it was gone, she had declined into the last stages of Dementia. So, I was able to place her into a nice Nursing home.

Be aware, if u take Mom in she will continue to decline. If she hasn't already, she will forget how to use a remote and a telephone. She will forget how to bathe and u will need to do that. You will need to toilet her, because she will be incontinent. (Worst part of caregiving for me).
Your Mom was raised at a time that NHs were horrible places. No, they aren't perfect now, but lots better. The State inspects and are more in control. What Mom wants will not matter in the later stages because she will no longer be that aware of her surroundings.

You will need help. So, if you take this on, use Moms money to hire an aide to help with the bathing. Give u sometime to yourself. Maybe Adultcare. Maybe some respite so u can go on vacation. I think one poster did this and came back to find her Mom liked the AL she was doing the respite in.

Never say never. None of us knows what the future holds.
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Tese50 Feb 27, 2020
Thank you so much. This is how I thought it might play out when I envisioned the scenario. Right now she is too mentally aware of her surroundings to place her without resentment. However, I realize there will come a point when that wont be an issue. I will definitely look into an aide. I'm not too big on the toilet issues, either.
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I would try to keep your mother in a setting with socialization opportunities as long as possible. When/if she does move into your home, please consider finding an Adult Day Care so she can continue to enjoy meals with other seniors.

I encourage you to check with your local Area Agency on Aging to determine what services your mother may qualify for. TN has Medicaid waivers for AL/MC care when a senior has health conditions that require medication management but isn't ill enough to need NH care. Maybe PA does too?

At some point in the ALZ decline, your mother will require 24/7 supervision and care and you will mostly likely need to place her in a NH. You need to view her living in your home as a temporary measure during the time where she still has enough cognitive function to know and enjoy her environment.
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Tese50 Feb 26, 2020
Thank you. After all these responses, I'm certainly weighing all the options. All of you have already been there, so I'm taking advice from those who have walked this long hard road.
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Unless your home is adapted to a person using a wheelchair you might want to reconsider having her move in. Unless you are willing to make changes.
Ramps
No carpet
Large bathroom with roll in shower
No stairs
Wide hallways and wide doors
You will need help, caregivers that will come in and help out.
There are other factors but you get the idea.
The person that said "no nursing home" may not be aware of the Memory Care facilities that are not like a nursing home and she can transition from an Assisted Living to Memory Care fairly easily. She is used to a "community" life at this point it will be difficult for her to transition back if after 6 months or a year you decide that it is no longer safe for her in your home and she needs to go to Memory Care.

About the "stages" I always found them confusing as my Husband could do some things that he should not have been able to and could not do others.
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Tese50 Feb 26, 2020
Thank you - very helpful. I'm no spring chicken myself and live in a 55+ community which has most of the amenities she would need right now, but not so sure looking ahead.
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Unless money is an issue (and I realize that the memory wing or assisted living may be more expensive than assisted living), I would be looking for her next home with the contact she likes.  Also, I would ask her primary care physician about the hallucinations, we have had some luck with medication.   If money is an issue, you may want to consult an elder care attorney about what state benefits are available.
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Thank you all of your responses. To all who questioned why I would consider taking her in.

1) She has made it expressly clear pre and post-dementia that she doesn't want to go into a 'nursing home', just as she made it clear she would never want to live with one of her children which we heard as early on as in our 20's growing up. Which wish do I honor???

2) She doesn't have the money for assisted living or memory care centers which I have researched and are largely, if not all, out of pocket.

3) I don't want her to die alone.

These are not excuses to pacify myself, they are the facts. I'm very torn about what to do when the time comes.
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Do not move her into your home. Find her another solution, assisted living, memory care, care home, whatever is appropriate. She does not want to interfere or cause more stress on your life.
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This sounds exactly what happened with my mother when it all began, other than we didn't have the dementia diagnosis and it hit us like a freight train out of nowhere. Complete with the sundowning and strange sleeping schedule. We had a few other complications in the mix, but basically, it sounds like what we went through. Not saying that your mother will follow the same path as mine, but if she is having TIA's, I would expect you will begin to see an obvious decline in her mental capacity periodically. We tried to care for my mother at her home and even had help, but it was killing us. We had to place her in a MC facility. If I was you, I'd begin to look for one, unless the place she is living now offers it. This is going to get harder and harder as she declines.
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Tese50 Feb 26, 2020
Thank you.
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As she declines, IMO she should go to AL or MC, not your home, she will need more professional care. She has expressed her desire to NOT move in with you, why not honor that?

My mother is 95, we recently placed her in AL, she really likes it, no meals to prepare, meds are given to her, activities and being around people her age is a joy to her, no more isolation, she has made several new friends, life is good for her.

Neither me or my brother are clinically trained and thus have no business attempting to care for a 95 year old in our home, not that we would want to in the first place.
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Tese50 Feb 26, 2020
Thank you.
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Why would you be considering this when she has made it clear it is not something she wants, why not make the move to assisted living?
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Tese50 Feb 26, 2020
Thank you. See my post above.
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" I know I will have to eventually take her in, but I’m not sure of the right time to do it. Pre-dementia, she has always said that she didn’t want to move in with me or my brother and I haven’t brought the subject up with her lately."

Why will you eventually have to take her in? Does your brother want her to move in, too? Why won't you honor her desire to NOT move in with either of you?
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Tese50 Feb 26, 2020
Thank you. See my post above.
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