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Mom has begun to believe her hallucinations are real. She has called the police, wandered her neighborhood and even began telling half truths about "the voices". Problem is these hallucinations are directional so they are entirely real to her. Since being put on a 3rd medication, things have calmed down quite a bit. We are not taking care of all her business while waiting and waiting on a long term care insurance policy to be approved. I'm hoping they will at least pay some of her care since she has been paying over $300 a month for the policy. The ins co is jerking me around some but I am hopeful that I will have some positive news soon. Being an only child is hard. I know the time has come where she needs to move into memory care, but I hate that she will hate me for it. My husband and I are snowbirds. My health is poor and my hubby has issues too. It has made me sick to watch her decline. So we would like to continue going south for our own health in the winter. Any words of wisdom? I am at a loss.

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hi I just wanted to say something about you being worried how mom will hate you if you move her. ~please~ try not to let that bother you. If she is seeing and hearing things(plus dementia), then she just isn't thinking straight anymore, period. you have to take control, she is no longer able to. so if you feel some hate coming...just shake your head and move forward with your plans.

she's living alone? this is so scary.
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lexibrite Aug 19, 2018
Thanks wally003. Yes my mom lives alone but my son stays with her over night. After some time of doing this, however, it is starting to be too much. I have control of her finances etc. Your advice is most appreciated!
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What are her resources? What is her health like? Would she be medically qualified for a memory unit at a nursing home? She could private pay and spend down to Medicaid?

Have you considered admission to a psychiatric unit to het her meds sorted?. She is clearly a danger to herself, and to your health.

Can you admit her to memory care NOW and gain the facility's help in fighting the insurance company?

Make sure that you c.c all your written correspondence to the insurance company to your State Attorney General and State Insurance Commssion. I've found that doing that can speed resolutions enormously.

(((((Hugs)))))
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lexibrite Aug 19, 2018
Thanks for your reply. My mom has a little savings and a fairly nice home. I know she will use her resources up quickly and we will likely end up selling the home to pay for care. She is in good general health, just some issues due to her age. Not sure what spending down means....could you clarify that for me? Also the suggestion to cc corresp. to the State Insurance commission is a very good idea. Again, many thanks.
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Lexi, your mom is past the point of being able to be alone. She needs constant supervision, 24/7. If your son is a sound sleeper like mine, Grandma could take off outside and by the time he realizes she’s gone, well..

A good percentage of us here have dealt with being “hated” for placing a loved one in a facility. But deep down, we knew we had to. For some people, dementia is a very angry disease. My mom lived her last years in skilled nursing hating everyone. But she was safe, fed and well cared for.
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Hallucinations are always "real" to the person experiencing them. (I used to be a psychiatric nurse.)

It is unsafe for her to remain living with family (or alone). Also, you and your husband have a right to your own lives, to be able to travel south when the spirit moves you and while you still have enough health to do so.

I recommend that you start investigating memory care places and get her name on the waiting list. The time has come.
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lexibrite Aug 19, 2018
Thank you dragonflower. I am calling a memory care facility tomorrow. My mom has days where she is nearly normal and other days where she is almost totally disconnected with reality. I am being a little chicken because she always asked not to be placed in a home. She has long term care insurance that she paid on for years, but they are slow as molasses making a decision to pay, (even though her doctor wrote them a letter stating she is not able to take care of her own affairs). So frustrating. Thank heavens my kids and hubby help me because I am an only child.
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"Spending down" refers to using up mom's financial resources with an eye to a time when she might need Medicaid. Once you start paying for care, it is imperative that you keep good records of where her money is being spent so that Medicaid will not see transfer of funds as "gifts".
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My Mum is also 94, has dementia and auditory hallucinations and I am an only child. I tried letting her remain in her home, with care coming in 3 times a day, cameras and a door alarm, but it became too disturbing for her as she was convinced there were people fighting in her garden, a boy hiding in her loft, burglars breaking in, carers stealing anything she couldn’t immediately find etc. She would go outside in her pyjamas to look for the intruders or to go for help - on the last occasion the police were callled because she was knocking on a neighbours window after midnight, on a cold night.

I arranged for her to be admitted for a psychiatric evaluation, I told her she had an appointment, then, after we were there, I said the doctor needed her to stay in. She accepted that, with no issues. After evaluating her for a month, the psychiatrist said she needed full time care, so I found a suitable nursing home (she is self funding but I haven’t told her she is paying for it, she wouldn’t want so much of her own money spent on her), the hospital transported her over, so I could tell her it was another unit the doctor wanted to move her to, because it was better for her.

She has been there since March, she now can’t remember where she used to live. Until then I just kept telling her the doctor wanted her to stay because it was the best place for her just now.

The hallucinations got worse, to the point where I couldn’t speak to her, she would tell me to shush because I was interrupting her conversation with the voices. She has now been prescribed anti psychotic medication, which is helping.

It was a difficult decision to make and I can understand totally why anyone would be reluctant, but I knew it was best for her and I can see now, the difference that 24 hour care makes. She is showered and fed (which she refused from carers in her home), with lots of activities to take part in. For now, she is stable, but who knows what the future brings, it’s a heartbreaking journey.
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lexibrite Aug 22, 2018
I am so sorry you had this same experience. No one seems to understand that this is a real phenomenon. It is a real harsh reality. I am touring a place Friday that I hope will help us. You are in my thoughts. I hope to report soon my results.
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Hi! I know this might not soothe your heart in terms of the decision you're facing right now, but watching this sort of situation with both of my grandmothers has moved me to begin the conversation regarding my future needs with my son now. I firmly believe that both of my grandmothers - before their dementia symptoms took over their ability to reason - would have supported their children's efforts to care for them. It was the dementia responding with "I hate you" and "I'll never forgive you for what you've done to me." Several times over the past year, I've told my son that I want him to know that I trust him to take care of me and to make the best decisions he can make when/if the time comes that I can't make them for myself. I also told my parents that I promise to do my very best for them when/if they need me, and that any decisions I end up having to make for them will be made out of love and respect for them. They both said they trust me and know that I'll do what needs to be done.

I hope that this will take some of the guilt out of making painful decisions in the future. My parents never had these conversations with their parents, and as dementia has changed their mothers the window of opportunity for real understanding seems to be gone. My dad's mom passed away a year and a half ago, and I know my dad carries guilt because she really didn't understand why she had to be in a care facility - and she was brutal in berating him for "putting her there" even though it was apparent to everyone including her doctors that it was necessary. The funny thing is that my grandmother was a doctor. And she was very vocal about her intolerance of people who couldn't accept the reality of their needs and limitations as they aged, at least when she still had her faculties about her. Dementia took away her ability to see that in herself. So I think that her younger self would have approved of what my dad did out of love for her. Maybe your mom's younger self would thank you for doing what you know is the right thing to properly care for her.
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disgustedtoo Aug 22, 2018
Another awesome post - appears your dad is still among the living - perhaps sharing this wisdom with him, often, will help him with his guilt? Can't hurt, worth a try!
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Lexibrite I am sorry, I did not make myself clear earlier. As someone who has been in your shoes as well as a Registered Nurse, from the little information you have provided it appears that you know what needs to be done. Your Mum is no longer safe living alone. While it is lovely that your son has been staying with her at night, that cannot go on forever and that still leaves her alone during the day. You need to take control and find a place of YOUR choosing quickly because if something were to happen to Mum and she wound up in the hospital, social services would place her in the first bed available upon discharge, no matter where it was. You do not want things like that to happen. A 94 year old with dementia alone all day has a high risk of hurting themselves or wandering. While that has not happened yet, every day is a new day of possibilities with dementia so you cannot trust that tomorrow will be a continuation of who you know your Mum to be today.
Wishing you peace as you traverse these coming days and weeks of transition. With peace and light XO
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lexibrite Aug 22, 2018
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She will forget soon just as my mom did - we told her it was temporary until her walking was better - she had been in rehab before so she assumed that it was similar & I didn't tell her different as that made her happy

Often it is how you phrase it that can be the difference - try telling her it is only while you are down south & hopefully by the time you come back she will be settled - the fib for their benefit is much better that screaming, tears, words etc - look for a way to skirt around the permanent part & accentuate the positive [I believe there is a song about that]
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lexibrite Aug 22, 2018
I so appreciate your help. People in this position need all the help we can get from people with your experience. Many thanks.
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My Dad was furious at everyone. He is 90 and has lived on his own until this spring. He has been in a SNF for 4-5 months. He yelled at everyone, was very angry, hallucinating and delusional. He has gained 15 pounds, has stopped trying to escape or go home, and is clean. He is safe. We can breathe easy knowing he is safe.
He has finally made a friend, and is moving into a double room with him.
If you knew my Dad, you would know this is a miracle.
You are due for one also.
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lexibrite Aug 22, 2018
I hope I can create a good outcome for my mom. She deserves it. And...I am ready for that miracle time too. Thanks SO much for your words.
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