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Mom finally agreed to go tour a facility today (yay, progress!). Seemed like a nice place, but they are more like Independent Living and it would cost $500/mo extra to have someone come and take mom's blood sugar and administer insulin and meds twice a day. They do, however, have a call button and staff available on site in case of emergency, so that part is nice.

It seemed like a friendly community with lots of activities. I'm thinking mom would do better with a roommate, although she was complaining about not liking being around all the people. But she is also afraid to be alone for long periods of time. I can't leave for more than a couple hours or so at most, even then it's a struggle.

This community seemed like there would be people around in the common areas most of the time, but no semi private rooms available.

Since she's been on the Cogentin, she has been able to perform her ADLS better. Still a little shakiness but can still bathe, dress, brush hair, etc. Meds would be the only thing she would need physical help with daily.

Anything that I should know or ask about AL from some of you who have had parents there? Would it be possible that independent living might be a better deal (within a "community" setting like this one, not separate apartment buildings - this was all one indoor, enclosed facility which is locked in the evening and residents enter by key card, similar to a hotel), and then just pay extra for med services?

Mom's issue right now is primarily with her mental health, struggling with paranoia, anxiety and fear of being alone for long periods of time. She is still ambulatory but has gotten isolated due to her fear, etc and doesn't have any friends and rarely wants to leave the house.

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If she can barely afford the place now, know that if her needs increase so will her bill. Just something to keep in mind if she has a hard time with change.
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Reply to Isthisrealyreal
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Thank you for the responses. I finally convinced mom to go back with me today to talk to the facility manager. Had primary doctor appointment beforehand so we stopped for lunch afterward and headed over there.

Speaking of mom's doctor appt, her A1C is down a little from last time, but still high, so he is putting in an endocrinology referral. Glad for that because that will help manage her diabetes better.

She says she might want to live at the facility, still not sure. I am going to do some more leg work tomorrow to contact her insurance company and Medicare to see what if any of her care they might pay since she does require a skilled nurse for insulin injections.

Guess I just needed to vent this morning. She was in better spirits this afternoon. I was just honest with her and told her I love her and want to make sure she is in a nice place and will make sure she is safe, but that I need to be able to have time for my hubby and kids and to take care of our home too.
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Reply to FrazzledMama
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PS to my post above: Ombudsman also provide resident advocacy to nursing homes and small residential care homes, in addition to assisted living facilities.
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Reply to Sharrie98
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Here is one more question to ask when surveying AL facilities: is there an Ombudsman? This is usually posted in the reception area, with the name and contact information. If not posted, ask.

An Ombudsman is a person who visits assigned facilities on a pop-in basis; no advance notice is required. Must be certified and trained (in California anyway - I do not know laws in other states.)

He/she is an advocate for the residents! The on-site visits include things like chatting with the residents, eating meals in the dining room, attending the AL committee meetings, and keeping a detailed record of each visit (the records are submitted to the state agency for which the Ombudsman represents).

The Ombudsman also meets the family members when necessary, to gain insights not usually apparent during on-site visits with the residents.

I was an Ombudsman for several years and loved meeting the residents. And, as an advocate for them, I was always on the watch for ways to improve situations that were less than perfect. I met with the Executive Manager monthly to share my findings, after obtaining permission to do so from the resident involved. Some AL management and staff considered me a threat, while most listened and acted on my recommendations and welcomed the chance to improve the residents’ stay at the facility.

My chats with the residents were confidential, unless I saw the threat of harm. The fear of retaliation kept many conversations a secret; however, I sought out additional resident conversations when a problem arose to suss out things like: how many residents were affected by the problem? Was the issue easily fixed, as in ensuring the food was served at a warmer temperature?

I also reported a few facilities to the state agencies and requested an immediate investigation. This was where my diligence paid off in helping the residents because it was my role to make sure that the staff and management did not mistreat the residents. I was the residents’ voice. In a few cases, the facilities were fined and ultimately shut down.

Just a few thoughts for those who are unaware of the Ombudsman program. As family members and friends of AL residents, be sure to contact the Ombudsman and say “hi” ...
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Reply to Sharrie98
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Her neurologist had her stop the antipsychotics for 6 months (we go back in Sept) due to Parkinson like symptoms in order to see if the meds could be some of the cause. She is more lucid and "with it" but still has involuntary leg movements, anxiety and paranoia (which she did with the psych meds also but was more "zoned out").

Her psych doc put her on Cogentin and Ativan until we see the neurologist again. They help with the anxiety and muscle spasms somewhat but unfortunately she does still get scared and paranoid frequently, and still has auditory hallucinations.

Her MRI  two months ago didn't show any major changes, but she did go into a diabetic coma in 2011, and it seems that is when the hallucinations started.  Those and the paranoia have just gotten steadily worse since then.  Her psych doc said it's probable mom sustained damage in her brain from the coma and the high glucose that may not show up on a scan.  Neuro doc had said it could also be Parkinsons or LBD, but will do another assessment and evaluate more when we go back.
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Reply to FrazzledMama
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Is mom seeing a geriatric psychiatrist ? Is she getting medication to help her deal with the agitation, anxiety and paranoia?
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Reply to BarbBrooklyn
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I'm frustrated. We went to tour an IL facility on Saturday. They do have onsite home care, which would be worth the cost considering with the rent would still be within her budget, barely but doable.

She seemed in good spirits on Saturday like she liked the place, so we made plans to go back today to talk more about the care cost, as they said insurance may cover some of the skilled nursing portion.

Well today mom told me she doesn't want to move there. My abusive sister is supposed to be out of her house on the 1st according to the court order (yes, she's been living in mom's house rent free while mom is living with me!).

I asked mom if she wanted to go back home, but she says she's afraid my sister will come back and beat her. I told her we would change the locks and I will not allow my sister back over there, but she can only afford someone to come a maximum of 4 hours a day with the agency rates here.

No medical reason she can't be alone some, but due to her anxiety and paranoia she probably shouldn't be for long stretches. That's why I think this facility is better, because it is all one building, like a hotel, has home health staff on site during the hours of 9a-6p M-F, and she has a call button if an emergency were to happen. Plus people there all the time but she has her own room if she wants alone time, much like a hotel.

I have told her I love her and want to keep her safe, but need time for my husband and kids too, so her living with me is temporary.

What do I do, then, if she doesn't want to move out? She started crying and asking for more time, but to her "more time" will turn into years if I let it. I'm so torn on what to do.  I know mom is sick, and scared, and I'm not trying to be unsympathetic or a jerk, but I am getting worn out, and hubs and kids are getting worn out too.
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Reply to FrazzledMama
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FrazzledMama, it would be up to the Admin staff to check Mom to see whether she can still be ok with Independent Living, thus a nice apartment with a living room and kitchen... or if she would be better living in Assisted Living.

When my own Dad was in Independent Living eventually he would forget to take his medicine, thus Dad had to sign up for the optional Med-tech, that is where a qualified Staff member can give Dad his pills. Since Dad needed pills twice a day, that was an added $900 a month for him, but well worth the cost.

Dad liked his "independence" to do what he wanted, be social or just be happy as a clam sitting in his recliner reading or watching TV. Dad did sign up for physical therapy which he enjoyed.

What questions to ask the facility? Does the facility have weekly linen service where someone comes into the apartment and removes the sheets/towels and replaces them with a clean set of sheets/clean towels, then washes/dry and puts the newly clean sheets/towels in the linen closet.

Does the facility have weekly housekeeping? Thus someone comes in to vacuum, dust, clean the bathroom and cleans the kitchen floor, counter tops and sink.

Does the facility offer in the rent three meals in a restaurant styled dining room, where your Mom would sit with someone the Staff picks out for her. My Dad sat with a couple who was from the State where he grew up, the odd of that were staggering. And if the kitchen helps with special diets. My Dad was Lactose Intolerant, so I brought a carton of Lactaid milk and a carton of Lactaid ice cream for the kitchen to keep on hand just for Dad.

Are there trips once a day to a certain store via the community bus? Where my Dad lived, one day was Wal-mart, another day a grocery store, another day the Dollar Store, etc. On Sundays the community bus when to the nearby Catholic Church.

Is there a move-in fee. My Dad had to pay one before he moved-in. Dad also had to pay his utilities as each apartment had their own furnace/air conditioning unit. And there was a set price on the landline telephone.

Dad could have guest for lunch or dinner, but he would need to let the kitchen know at least a couple hours a head of time. The meal cost was charged to his room. Like a hotel.

Is there a 24/hour nurse in the facility at all times? Are there fire-drills? Dad loved the fire-drills as he enjoyed seeing the fire trucks :)

Does the facility allow private caregivers from outside Agencies? Dad was able to bring his private caregiver who was there for only a half day. She gave Dad a sense of routine in the mornings. And was able to drag him out of his room if there was something interesting in the community room :)

Eventually the Staff recommended that Dad now needed to move into Assisted Living.  Dad's only worry was about the food, if he was going to have the same chef.  In AL he had daily linen service and housekeeping. 
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Reply to freqflyer
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It sounds like AL is your best choice for Mom. You don’t want to have to move her in a few months if she suffers a cognitive decline. Talk with Mom about her anxiety and tell her she can always call a nurse or go see who’s chilling out in the public rooms. My own mom was a recluse and she actually would go down to the apartment lobby and visit. They almost had to use smelling salts on me when I found that out! If Mom has her own room, and she’s having an “anti-social” day, she can stay in her room. She can mix and mingle when she feels like it. But if she has a roommate, she will have little alone time.

Wherever she goes, give her time. There will be days when she loves the place and days when she hates it and the fault is all yours. Stay in touch with the staff for reports on how she’s doing. Visit often but not every day. Good luck!
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