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I just attended first support group ever. It happened to be at a memory care facility with most of the loved ones admitted to and living in that place. There were horror stories about the care. Their loved ones falling, breaking bones, hearing aids and dentures going missing, aides sitting on their cell phones doing nothing, no nurses on duty. They say this is the state of affairs throughout the country due to COVID. Is this so?
My husband is just starting to get a little worse in his Alzheimer’s journey. I came away from there scared to death!

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There are good places and there are bad places. This site can provide you assistance on researching facilities and it would be best if you can visit them yourself, if possible unannounced and ask for a tour. Ask to eat a meal in the facility, ask to get in touch with a family who has a loved one there.

From my experience try to find a facility that has a graduated care, so you will not need to move your LO in the future.

You will need to do some homework, even if you need to stay in the parking lot and wait for a visiting family and approach them and talk to them, most families are more than willing to talk to you. Ask probing question, what they like about the facility, the food, how well their LOs are being treated.

the food thing is a hit and miss, talk to 10 individuals and they will either love it or hate it. Ask about the room, appt etc.

If possible and financially feasible try to find a facility with AL MC so it will be less expensive but they will have another section for MC as the cognitive challenges progresses.

Best wishes
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Reply to SusanHeart
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My mother was in a wonderful Memory Care facility. They kept the residents out of their rooms all day with multiple activities so they didn’t just sit and sleep. No TVs in the rooms, just one in the gathering room. During Covid the staff made every accommodation to make sure we got to visit Mom, even if it was only waving to her through the window. They recognized how important it is to the residents to see visitors.

Im sure there were some slackers and unmotivated staff but in general I was very happy with her care. She was taken off several meds prescribed at her previous facility to keep her quiet and make her sleep. Every person I engaged with was helpful and concerned. Of course this was a nice new facility and we were self paying not on Medicaid.

Yes, there are a lot of substandard facilities out there, and for most of the staff it’s just a job. Your job is to keep an eye on things and speak up if you have a concern. Do your research and get lots of referrals before you choose.
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Reply to Frances73
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COVID wasn't an issue when my wife was in MC. But I know in talking with others and reading posts on this forum, that the pandemic brought some serious concerns to family members who didn't have access to their LO.

But facilities are starting to relax restrictions and allow families in to visit. So now you get to see for yourself what you can expect and what care is provided. There are many ways to evaluate a facility. There's the technical stuff like facility licensing, staff licensing and ratios, contract wording, etc., and then there's the subjective stuff- what you see, what you hear, even how you feel about the place. When visiting a facility, don't just listen to what the staff is saying, observe what the staff is doing. Engage your senses. Watch how they interact with the residents. I eliminated one facility because I saw a staff person pulling a resident backward in a wheelchair. Not for my wife, I thought. Does the staff treat residents with dignity and respect? Despite a house full of incontinence, there should be no unpleasant odor. Ask under what circumstances the facility would evict your LO- no more money, unmanageable behavior? Is the facility clean? Does it have an outdoor area where residents can walk and enjoy some fresh air? Does the food look appetizing?

So don't be afraid, do your homework. My wife's MC facility was excellent. I've conducted support groups in care facilities. The purpose is not to complain about the facility, the purpose is to validate one's needs and emotions, to offer a safe place to talk without judgment, to socialize, to offer some respite time, and to share caregiving experiences.
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Frances73 Jun 9, 2021
I scheduled a meeting with the director of each facility we were considering. Mom and I toured and then had lunch so we could judge the food. I also made a point of talking to ant residents we encountered.
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Any time someone paints a situation with a broad brush like "...this is the state of affairs throughout the country due to COVID," you should take that with a giant grain of salt. There is absolutely no truth to such a statement, so don't listen to it.

My mother's MC has been amazing throughout the entire lockdown, even though they weren't allowing visitors except through windows. Did the residents decline? Absolutely. WE declined throughout the lockdown and we don't have dementia and aren't in our 80s and 90s, so of course they declined. Nonetheless, the staff at Mom's place was remarkable and truly heroic throughout the entire time and continue to be so now.

People fall at nursing homes just as they do at home. The difference is there are trained people there to pick them up and they also likely prevent a lot of falls from happening in the first place.

As far as hearing aid going missing, that happened to my mom. The caregiver wrapped them in a napkin, put them in her pocket to put away when she went back to the nurses station, and yes, she threw them away. It happens. The nursing home paid for them to be replaced, too, so they took responsibility. There are also little leashes you can clip to hearing aids to keep them from falling out on the ground. Someone here mentioned them.

How would someone know there were no nurses on duty? Another statement I'd take with a grain of salt.

Do your research before you choose a place for your husband. I did mine, and I found an excellent place for my mom, and I think you will be able to as well. Know that residents with attentive family members who visit and get to know the caregivers seem to be cared for pretty well. I'm at my mom's place three times a week now that the lockdown is over, and the caregivers freely come over to me to chat and see me as an ally, not an enemy. Be sure you become that kind of person, too, once your husband is living in a nursing home.
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Frances73 Jun 9, 2021
Yep, after 3 moves last year we never found Mom's hearing aids. Get insurance! And yes, old people fall, it’s part of aging.

Mom had several trips to the emergency room after falls at night when she should have been in bed. The nursing manager discussed the problem with me and we chose to have her bed lowered at night so if she did try to get out she would just roll onto the floor.
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My Dads MC was wonderful, Did he fall, yes indeed,, he was a fast guy! But they kept him busy , well fed ( with help when he could no longer swallow very well) and clean. He was only there a month before he passed on hospice, and they were wonderful with that as well. Now my MILs MC was not so hot.. way more residents and less staff,, but my FIL picked the cheapest place he could find ( with help from my BIL,, noone listened to hubs and I as we had already been down this road. ) So if you can look at a few, or if you know anyone who has a family member there ( we did for Dads, and she loved the care her Mom got) then you can make a better choice. I have to admit they are pricey.. But FIL could have afforded better care for MIL,, he just wanted to "save the money for his sons" and its a mess even so..LOL
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Frances73 Jun 9, 2021
Yes, you get what you pay for.
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Hi, Catwinter. My mother was in a stand-alone memory care center for a month before she died from a cardiac event (on hospice). Moving her there was one of the hardest decisions of my life and I knew that I was trading one kind of difficulty for another. There were early concerns. I learned a few things I'd like to pass on that I believe would have helped me better address those concerns. You will need to be your husband's voice to assure he receives the best care possible.

My recommendation is to choose several facilities that will be convenient for you to visit frequently and then compare what you learn about them. Arm yourself with information about those facilities: a) state laws that govern the type of facility you are considering (memory care at assisted living may differ from the nursing home); b) state laws about cameras in resident rooms; and c) state health department complaint-based survey reports for the facilities you are considering; d) look for job ads for the facilities you are considering. The job descriptions will help you understand what to expect from caregivers and to whom to address your concerns. The number of job ads may also indicate that the facility is stressed, especially if the ads are for leadership roles. Finally, read all the topics on the AgingCare website in the memory care category. Contributors have been extremely helpful!

My second recommendation is that you go to interviews with the facility representatives with the intent to understand how well they will meet your expectations, given the information you found online. Ask for a copy of their Resident Handbook. The handbook should provide you with information about expectations and is a good measure of transparency. It will also be a tool for accountability.

Now that COVID restrictions are lifting you should be able to get a tour of the common areas as well as the room you are considering: Look to see how well the staff are engaging with residents and ask about the staff ratio for each shift and on weekends (it varies depending on the time of day). Ask who is included in the staff ratio and how often an LPN or RN is present in the building. If you saw a job ad for an RN, ask how they are meeting state regulations in the meantime and assuring adequate supervision of the care staff.

Once you select a facility, you'll be interviewed by an RN that will evaluate "fit." You need to ask questions as well, based on what you've learned about the facility. That RN will be contributing to the development of your husband's admitting care plan - let the RN know you want a copy on admission. And clarify when the next care plan meeting will occur. These care plans are tools for accountability.

I'd like to say I did all this prior to admitting my mother to memory care. Instead, I took a leap of faith based on a hospice staff member's recommendation. If I'd done my homework, I might have selected a different facility. No facility will be perfect, but having this information at hand will help you with your selection, as well as holding the facility accountable for meeting the terms of the contract.

Good luck!
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Frances73 Jun 9, 2021
Excellent advice. And don’t just accept what the staff tell you, verify the facts. Don’t be awe by all the glitzy marketing gimmicks like popcorn machines, bars, and coffee shops. Often these are only for show and the residents don’t really use them. Moms AL had a beauty shop. But the operator only worked one day a week and as Mom said "everyone came out looking like Shirley Temple!"
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Facilities had what I call "Covid Cover"
This allowed a lot of places to be complacent because the family members ability to "just drop in to visit" was gone. Then states allowed their health departments to ignore a lot of things due to covid. Money talks and the ALF have a lot of money invested in lobbyists. This is before Covid so nothing new. What is different this time is a year+ of no visitors.
The good facilities rose to the top...the bad got worse.
For profit places are great till they are not. This depends on management and corporate greed. Ombudsman contact is a great way to get an overall view of a facility. AND as another post said, an aging family member is not like the person you remember. They are weak, not able to care for themselves, demanding, confused, sad, memory challenged, health and personal care is poor or non-existent. They are like a two year old, and when we were raising our children we knew the two year old phase would pass. Unfortunately at the end of life the only phase is eventual death,
Support groups are great for venting and what facilities need! Many of us struggle alone with plans of joining a support group. Daily caring for the financial burdens, emotional burdens, family dramas etc. can prevent attending them. Grain of salt and if you were the newbie with others who are already bonding, human nature has what I call the "bonding blow-harding" phase.
Hang in there and whatever you do DON'T beat yourself up for the decisions you make for love. You do what YOU think is best for YOU and your loved one.
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Reply to citymouse
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My mother lived happily in a beautiful, well run SNF (before AL/MC was available), her baby sister (93) lives there now, and if I live long enough and lose cognition as they did, I will live there too.

We all want our LOs to enjoy the best lives possible, but sometimes we forget the HELL that Covid has been for anyone associated with residential care, residents and caregivers alike.
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My mother’s MC is a wonderful place, with sweet, compassionate staff.

The nurses maintain terrific communication with me.

I am VERY pleased with the care my mother gets there. She is NOT an easy patient, and still, they are kind and respectful to her.

Tour some MC facilities before you need one. That might help you feel more comfortable when the time comes.
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Reply to cxmoody
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The best memory care facilities are still pretty grim places. Much of what you mention about falls lost dentures and so on is par for the course with elders who are near the end of life. Sad thing is the end of life can take years for some.

Short staffing is an issue in every care facility I’ve dealt with. Especially at the lower paid jobs like aides and food prep. Always a big turnover. In overseeing my parents care I dealt with assisted living, nursing home , memory care and two rehab facilities. Some were better than others. There is no perfect place.

Also, I think lots of time people’s expectations of care places are unrealistic and they freak out about routine stuff like lost dentures and lost glasses and tell all their horror stories. My folks got good care in their facilities but I would hear these “horror” stories from families about their elder in the room next door. Take it with a grain of salt.

Go visit some facilities in your area. Lay some track now if you can. Get your finances figured out. Your husband might start in assisted living and progress to memory care like my dad. Lots of places have both under one roof so it’s an easy transition. You’re beginning a difficult journey.
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Catwinter Jun 9, 2021
Thank you for the info!
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It's good there is a support group - is there also a family council that meets with the facility admin and nursing directors? Some means of having concerns/complaints addressed?

Don't panic. But sadly the things you describe are common to nursing facilities, period. Too many are working there because of the money and prestige, not because they're driven by compassion. Or common sense.

A large part of caring for a LO in a facility is showing up regularly, at no specific time, and engaging with the staff, especially those regularly attending to your husband. Commend where possible, report when necessary.

Every facility has an ombudsman assigned by the county. Get to know them. Tour other facilities; it's amazing the difference in culture from one to another. I'm trying to remember a study some years ago which found that generally privately-owned, smaller, facilities tended to rate better or have fewer complaints.

And showing up regularly comforts your LO, knowing that kind person is 'always' there. Nothing is perfect in this imperfect world, but you'll find a way to manage hubby's care at a distance.

Virtual hug and best wishes to you both.
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Catwinter Jun 9, 2021
Thank you for your response.
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My mother has been living in a Memory Care ALF since June of 2019. The truth of the matter is that the DISEASE is what is at the root of the 'horror stories', not the staff at the MC or the MC itself. Dentures & hearing aids go missing b/c the residents have no memory and cannot remember where they left them. The residents fall b/c they've lost core strength and have serious mobility issues, not b/c the 'staff' is doing something wrong. My mother has fallen 33x in Memory Care alone, not b/c the staff did something to cause it, but b/c she can't remember she's wheelchair bound and tries to get up or bend over to pick something up and falls out of bed or out of her wheelchair, etc. In fact, the staff has instituted a TON of safety measures to help ensure my mother will NOT fall, but fall she does anyway. It's impossible to prevent, at home or in managed care, in truth.

I have no real complaints against the ALF; there is plenty of staff on duty to care for the 23 residents who live there, there is always a nurse on duty too, which is the law. Is life in the MC perfect? Of course not. But the question is, is life in your home perfect with your husband & his care?

The root cause of the problem is the Alzheimer's and the myriad issues that go along with it. In my experience, my mother gets a great level of care in her MC and I thank God she's there every day. If you feel trepidation about the MC you went to a support meeting at, by all means, check out some others to find one you DO get a good feeling about.

Best of luck!
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Catwinter Jun 9, 2021
Thank you for the reality check!
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It all begins and ends with management. If the management at any facility is hands off and uninvolved that’s exactly what you get. The facility my mother lived in had very involved management, we were often asked if anything was wrong, and had care meetings to go over any issues or concerns. I think Covid has heightened the ability to slack off in providing good care, little beats a family often checking in and seeing the state of care, and Covid has had the side effect of providing cover for those not doing a good job. I know without doubt that my mother’s care was good, and made better by our frequent visits. I also saw this many times during hospitalizations with our son, I kept him dressed with hair combed everyday and it made a difference. It may not be the best side of human nature but it is very true, when others see you care, they care more
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Catwinter Jun 9, 2021
Thank you
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