My mother is 94, has memory problems, sundowners, and auditory hallucinations. I need help.

Hi I am the caregiver who was willing to help. if you would like and we can make a plan ..

Lexibrite,
You now need to put yourselves and your marriage first. You've both (you're a team) done all you can for your mom, and no one will judge you for making a decision to make sure your mom has good care 24/7! Any guilt you may feel is normal, but at this point her well-being long term is priority. Evidently, her buying LTC insurance was something she seriously thought about and planned for. Just think of it as you're following through on her wishes. You'll still be able to visit, and as I've been told, you can be a daughter again and not just burnt out caregiver.
Best Wishes.

To Be continued from my other post:

You said: "But there goes all her savings."
  This IS part of the "spend down" others mentioned, in the event mom will ever need to apply for Medicaid (if/when her own assets run out.) Her savings and any pension plus SS would be used for now, along with the LTC funds. Her house will likely need to be sold as well, using the proceeds to help pay for care. Your best bet is to consult with an Elder Care attorney (MOM's assets should pay for this, not you.) If you are not already DPOA, it may be too late, but if she has lucid times, she might pass muster with the attorney. This atty should be able to help advise you, set up a trust for mom (for house and assets), get LTC insurance on board (perhaps a second opinion from another doctor is needed? Oftentimes I have seen people say two opinions are needed in order to ensure she truly is incompetent and needs placement), and, if need be, start the Medicaid application.

You said: "No one seems to understand that this is a real phenomenon."
    No one, that is, who has not experienced this. You are in a place where MANY have experienced this.

You said: "I know you are right. It's just hard to do this on my own."  
   Yes, it is, there is no denying that this is a difficult decision, but it IS the right one! Just remember, here on this forum you are NOT alone! Also, reread Kickinrsd's post!

You said: "One person says the facility isn't safe enough, the other one, a nurse says their sister facility, with a memory care unit is too strict for her."
   I believe one of your posts mentioned mom out and about (perhaps it was someone else, but more than likely if it hasn't happened, it might soon)? A MC unit *SHOULD* be locked down. THAT really is the restriction, so they cannot wander off. It is not like anyone will be locked in a room or cell by themselves all day! You have to do your best to inspect places, ask LOTS of questions and make the decision based on the right place for your mom.

Betsysue2002 says: "Sadly she may "hate YOU " whether shes with you or in a facility so i think the best thing you can do is find a good facility with good caregivers."
   In addition to trying to understand it is the condition that is making anyone say mean nasty things to loved ones, you have to realize THIS is so true for many if not all dementia sufferers. What you need to learn to do is let it roll off your back. You know your REAL mom would not think or say such things (as another said, it is a bit like dealing with some toddlers/young children, who when told they cannot do/have something or have to do something they don't want to do, will yell how much they hate you!) Try not to react, try to let it go and redirect/refocus mom onto something else, if possible.

You said: "It is very hard not to feel guilty."
   Yes, it can be, however put it in perspective - you are only doing what is BEST for her, and as a benefit it helps you and your family as well. Do not let guilt get you down. She was preparing for this by getting a LTC policy, she just has lost that plan somewhere along the way. Would it be nice if all was rosy and we could care for everyone at home? Sure. But sometimes that just cannot be or is not in EVERYONE's best interest. Don't beat yourself up over it!

lexibrite:

I'm adding my comments based on some of yours and others, but not necessaily in order!

BarbBrooklyn suggested: "Have you considered admission to a psychiatric unit to het her meds sorted?"
 Although you are checking out a place, there may/may not be room, or you may not like it. You may have to check multiples before finding the right place... Having her evaluated (Medicare should cover this) can help in several ways: 1) give you more time to find available MC and 2) work out the best combination of medication and 3) give you more ammo for the LTC ins balkers. In addition, Barb's suggestion is good because you can move her from there to her new "home" (assuming you find one you like that has available room!) Then it becomes easier to blame the doctors for the move (if she still notices!) Mom, you are here to get better before you can go home!

You said: "I hate that she will hate me for it."
   As many others have said, it is the dementia talking, not mom. Don't let it get you down. If she rants, try redirecting/changing focus. If it doesn't work, just tell her you see she's not happy, you will be back later and leave. Be consistent. Despite dementia, sometimes something new will "stick" - I got an LCD board for helping communicate with mom due to hearing issues. She quickly took it on as hers, accused others of stealing it when it was "missing" AND learned quickly how to press the button to clear the screen! So, it might work, being consistent and firm... Given time, this behavior sometimes passes as well.

You said: "My health is poor and my hubby has issues too."
  So, what good would either of you be to her if something happened? It is better to find a place where she will be safe and cared for - bonus is it takes a lot off your shoulders, and allow you to follow the geese south!. To reinforce that, when she is in a safe place, now any time you do spend with her is spent WITH her, not doing things FOR her!! It will take you some time to get used to it, but you will feel so much better with that load (tasks AND concerns) off your back. Whether she gets used to the place or not, it really does not matter. Clearly she cannot stay alone, it it VERY expensive (more in most cases than using a facility) and she may reject any caregivers you bring in. It is wonderful that your son has tried to help out, but the time really has come that you need what others have called "the village" to care for mom.

You said: "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..."
   The nature of this afflication does often have its ups and downs, where they are seemingly normal, then out of touch. When this happens daily, usually down later in day/early evening, it is sun-downing. They might be fine when they get up, go through the day somewhat normal, then wham - Dr Jekyll Mr Hyde. Although it is generally later in the day this happens, some people's internal time clocks are out of whack or something as it occurs at a different time of day. Repeat of elsewhere - although she is asking not to be put in a "home", why did she buy LTC? That is mainly what it is for, although I believe it can be used for home care.

 It is interesting that mom is paying for LTC, BUT also asking not to be put in a home... I suspect the request came after dementia stepped in. First she IS of that age when a "home" meant the old nursing homes, which could be sub-standard and not ideal. Although there are some like that still out there, and many "modern" nursing homes can still be depressing at time, your mom might do well in a regular MC place. Some NH do have MC units, but it seems to me many NH candidates have special medical needs on top of dementia. You mom's condition now might be okay for just MC.

Once again, maxed out, so To Be Continued...

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.

Have an assessment done & put her in memory care. When she starts hitting, punching & throwing mouthwash in your eyes, stabbing you with her fork....then she will tell police you assaulted her & then you can have a nice respite in jail. We can be jail mates!

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]

For heaven's sake, I think you answered your own question. Given what is happening to your mother, and I assure you it will only get worse, you MUST start thinking of your own welfare FIRST. I think your mother will soon hate everyone and everything around her because it is different than that which she had and was before, and that includes YOU. Are you going to let her get away with that? I hope not. I am sure you loved her and you each took care of one another but if you keep her with you, YOU and your HUSBAND will be destroyed. Keep in touch with her and accept her dissatisfaction of not having you to lash out on. Think of yourself.

I really dreaded it, but Mom had made it clear before the dementia that we (my sister and I) were not to take care of her full time when the time came. She was fine. She loved all the attention and no one there made her feel stupid (like what was happening at the senior living place she had been in. My sister and I don't always get along, but we made a pact to deal with this in harmony. Her long term care policy paid for all but her hair and nail appointments. Her expenses at the senior living were quite high.

Being an only child is hard, but having two siblings who are constantly at war with each other is much worse! But after your mom moves into memory care, she may grow to like it. My Ex, who is now in memory/nursing care asked my RN daughter to bring him suicide pills before he went to an "institution." However, once there he got to where he liked it, and he liked the "sitter" who sat with him 10 hrs a day (paid for out of his funds). He no longer asks when he is going home, where he lived alone in a house where everything was falling apart due to negligence. My son disagreed about the sitter, but my daughter had her name on her father's bank account, so she controlled the purse. Now she is worried that he will outlive his savings, but he does like it in the "institution." And no longer talks about going "home." I too hope I die before I have to go to LTC, but the window between first realizing you have dementia (if indeed you ever do realize it) and having to go to a Memory or Long Term Care facility is very short. I say I will jump off my 10th floor balcony when I realize I have Alzheimer's (I do carry a gene for it)--but I doubt if I will.

I can only imagine how much harder this is as an only child, I don't know how my brothers and I could make these decisions without each other. While I don't think you are being selfish or wrong in anyway by wanting to continue living the life you and your husband have set up for yourselves I do understand the second guessing. I would ask you to consider it from a different angle though, move yourself and your family out of the equation for a moment. If you were able to arrange to have someone come in every day to check on mom would that be enough to keep her safe? If you had someone staying over night and spending a few hours a day with her, would that be enough? How about if you had someone come in each morning and each evening? Even if you hired people to stay with her 24/7 it would be a number of different people in and out and would that make life safer for mom, would it make life more enjoyable? If you could have enough staff at home to feel like she was safe would that make her happy? Would she be any less angry with you for having caregivers come into her home than moving her to MC and would her life be happier and more full at home or in a facility that is set up for this? It varies by personality & the facility I'm sure but I hear people talk about how much fuller life is and how much happier, more engaged their LO is since being moved into MC or AL even though they were moved kicking and screaming. It may be awful to say but it also may be a fact that while she might yell about how much she hates you for it she is likely to forget about that especially if she is in a better living situation and happier after acclimating. The truth is she is bound to scream she hates you or at least be very angry with you at least once, probably more, if you keep her at home, it's part of the process.

But if you can try to remove yourself from the equation as much as possible and consider what it will take to make her safe and happy you may discover that home is no longer the best place for HER so by moving her you are taking care of HER not yourself. As it turns out and it makes sense, what is best for her is also best for you and your family. That's nothing to feel guilty or selfish about and it simply means that what you are doing is the right thing for everyone, now you just have to go about figuring out how to make it happen. Good luck and try not to be so hard on yourself, this is one of my biggest fears and regrets about having an only child, leaving him alone and solely responsible/attached in the future.

I read here continually about problems like yours and wonder how i'll be so i hope this isnt too harsh.

Sadly she may "hate YOU " whether shes with you or in a facility so i think the best thing you can do is find a good facility with good caregivers.

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

My heart goes out to you.. I do live in care for mostly dementia clients. Maybe I could help while you try to figure out your final plan. If be free the 3rd week of September. And would donate time to help for a bit. Not trying to sell myself. Just want to help

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.

Lexibrite I am sorry you are at this crossroads with your Mum. Dementia of any kind is so very difficult for the family as they are watching their loved one disappear right before their eyes, dreading the day they will no longer be recognised or remembered and might become feared as a stranger.
As for fearing your Mum may hate you for your decisions regarding her care, the day when my husband and I realised we had no choice but to place my dear father-in-law in care became a distinctive turning point for my husband. He realised the roles had switched and just as there were likely times when his father may have feared his son hating him for decisions he had to make as the voice of experience, maturity and reason when he was young, now he was in the position to have to make decisions for his father based on the same things given dementia had robbed his father of them all.
While I know it is far easier said than done, these decisions must be made based on the realities at hand, namely the safety, security, health, happiness and wellbeing of your entire family, rather than on emotions.
Your Mum is 94. It sounds like she is in good overall health. If you look around the discussions on this site you will see comment after comment from people who moved a loved one in with them rather than a care home 10, 15, or 20 years ago and they have not had a life since. They gave up everything in those years, never anticipating the person living as long as they have. Some have lost marriages, some children and even more siblings and friends as many give up over time because of the time commitment and correlating lack of outside “life”. Most speak of wishing they had set different boundaries for themselves from the beginning but often guilt did not allow for that to happen.
I am saying this because you must determine your boundaries now. You have gone south for the winter and left your Mum behind for years I imagine. What makes you feel guilt about the idea of doing it while she is in a “home”? She will be better, not worse off. She will have her food prepared for her, her housekeeping and laundry done, assistance with showering and hygiene, people around her 24/7, activities and outings, her medications will be dispensed to her, someone will be looking out for her at all times, etc.. Once settled, her quality of life should improve, not decline.
When you promised your Mum you would never put her in a “home” you never anticipated dementia. Especially Lewy Body! It takes a village! No one person or one family can take care of dementia in the home. The needs are far too complex and widespread. This is why countries like Italy, where since the beginning of time family looks after their elders and care homes have never existed, now have care homes and are building more. For dementia patients. They too have come to understand that even with the biggest, most loving family with the best of intentions the needs are too great and it is nearly impossible to keep someone safe and healthy at home.
I agree with the advice to seek out a lawyer who specialises in elder law and finances in order to determine how best to protect and proceed with things.
Even without having made a definite decision, it is well worth visiting the care homes in your area that have dementia units appropriate for your Mum. Be sure to mention Lewy Body when speaking to them as you want a facility with experience in dealing with all your Mum is and will go through. Take a notebook and take pictures as it gets overwhelming to remember by the second one, much like looking for a house but far more emotional. Brainstorm together and write down any questions you, your husband or son have before going.
I have been in your shoes and so wish no one ever need take one step in my wake. I wish you peace in your decision making. You are Mum’s advocate but never forget to be your own as well. While seeing to Mum’s happiness make sure you are nurturing yours! With peace and light XO

She needs to be placed for her safety and your well being. I am going through it now, yes, she will say she hates you and how could you do this and tears, +all tough to swallow), but remember, it is not her, it is the disease. Just dig diwn deep and do what you have to do. Foing the right thing is never easy. Wish you the best.

Have you had Mom's hearing checked and does she wear a hearing aide. They can manifest what they think they hear. When my Mom first showed these signs, hearing test results were she had 80% hearing loss in both ears. Now with a hearing aide, the hallucinations are gone, she can enjoy family time better with two way engaged conversation.

Life is short both for you and mom. Placement seems the only reasonable solution. Don’t wait for s crisis to occur. The facility you chose will definitely speed the process of long term ins being used. They want to get paid.

I have one sibling who is not nearly as involved being that she is out of state and doesn't have the load to deal with on a daily basis. So in a sense, many of us in similar situations can identify with the sense of being alone with it all. There is SO much to know and understand from so many perspectives. I would invest some time in finding the very best elder law attorney you can to intervene on your behalf as far as the LTC insurance situation...they will be able to review the policy and defend her for what she is entitled to. They also may be aware of a geriatric care manager, someone who could check in on your mother while you go south. You would be able to be kept informed; you could appease any guilt you have with maybe a quick trip back to visit once every month or half way or something. If you have a geriatric specialist involved (or psych or neurology who specializes) you might be able to tweek the meds to make things better. I am hypersensitive due to a friend's husband being dx with Lewy Body. The professionals were resistant in believing her, as a lay person, but it was ultimately confirmed and evident. You might want to check on that as some meds have different results for those with that. Do not destroy your own health or you will not be able to be there to help her at all. Best of luck...also might want to connect with local Alzheimer's Assn and/or one of their support groups...the people who attend have no doubt traveled the same path and may know of some resources...

When dealing with this disease. Its best to do what's right for the patient not the daughter or son. I am at the very beginning stage with my mom. And I may have to make the decision of a memory care place one day.

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.

"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".

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.

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.

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.

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)))))