Is the dramatic decline in my LO’s health just a normal progression of her dementia, or is her MC facility not meeting her needs?

Memory care is different than a SNF ( skilled nursing facility) and I’m not sure how it works but they absolutely should be trying to FEED her or at least ASSIST her with meals. My husband is in a veterans medical Center ( it’s a SNF for vets) and he’s getting excellent care. He has lost a pair of shoes and a hat but he wanders and they were found In another Vets room. At his facility, they are very good about letting me know even the slightest changes and any bruises, rashes poor appetite ect. They offer ensure or glucerna shakes frequently and a sandwich before bed if he doesn’t eat well. I’m sorry your mom has advanced to this point. It’s so hard to see. Hospice will be a good resource and you know she is safe. Sending hugs and prayers. This is a “ club” that none of us ever wanted to be in. 💜

I just wanted to comment that maybe this facility has a Bed Bug infestation. They are sometimes mistaken for each other.

Shanindo: Her clothes should not go missing. The episodes of passing out may be a condition called syncope. I would suggest that she see a neurologist; however, she's a hospice patient. Prayers sent.

I had my mom in 2 memory care facilities that were very high end "boutique". I didn't have a camera at the first one and encountered similar problems and my mom was hospitalized for dehydration. In the second facility I had cameras that were approved by the facility. There aren't enough words to explain what really happens in memory care. The reality is that the workers are not trained in memory care. I have hours of footage over 6 months where my mom was neglected, left in wet briefs, not brought meals, never offered a beverage outside of what was brought at meals. They dropped the meals in her room (covid) and never checked back and then picked them up. No one ever noticed or noted if she had eaten or had a sip of anything. Management was aware because of my complaints on sharing video but it ended with them becoming bitter because my request for basic level care was something that they had never accomodated. They were not used to someone seeing how things are actually run. I was not even being picky, I was just asking for her care plan to be followed: take her to bathroom, make sure if she is wet/soiled to clean her up, bring her meals and fluids, and do room checks every 2 hours. She fell once and crawled on the floor for hours because they would go 7-10 hours without ever checking on her. I have my mom in private 24 hour care next door to me because after working with attorney general, ombudsman, LARA and anyone who would listen they basically said "it's a broken system". Even the ombudsman told me she would never put her loved one in a memory care because there is no accountability. If you keep your mom in memory care I would 100% get a camera so that you can appropriately advocate for her and really know what she is going through on a daily basis.

While my LO is not in MC, they are in SNF I was told by the social worker to keep on top of the staff, and be sure to check in often.

You should contact a personal injury lawyer, sure the clothing may he common but the weight loss is not and needs to be investigated throughly.

It is good that you’re noticing these things. If the hair on the back of your neck is standing up, it’s for good cause. Your mom cannot be her own voice anymore and many facilities take advantage of this excuse. You should stand up for her humane care and treatment.

Continued: Sorry, ran out of space:
I suggest you visit mom as often as humanly possible to stay on top of the staff at the MC; check on everything they do; make sure she's eating, etc.

Wishing you the BEST OF LUCK with a nerve wracking situation. Rely on what hospice tells you, too, they are usually a wonderful source of help, strength & reliable information you can trust.

My mother lived in Memory Care for almost 3 years and never had clothes missing from her room, wore other people's clothes, or had things go missing (like chargers) from her room; it was always kept locked. So that's a red flag right there. The good news from your post is that your mom has been to the hospital frequently, so if there was something physically wrong with her, it would have been found by the hospital during one of those visits, I would think. Right?

Nobody in mom's MC had ever gotten scabies! This usually comes from close skin-to-skin contact between people in crowded places or sometimes from sharing an infected person’s clothes, towels, or bedding. This would be a big red flag for me, too. It is not 'normal' for your mom to have none of her own clothing in her room, no.

The food; at mom's MC, the staff would help the residents eat if they weren't able to feed themselves. But, if/when mom was picking at her food & pushing it around on her plate (towards the end of her life), they would not insist she eat if she refused to. The staff cannot and will not force a resident to eat or drink fluid.

Hospice: they are an extra layer of help which is phenomenal, especially if you are worried that mom is not getting proper care at the MC *which sounds like it may be the case* The hospice staff visits on a regular basis (social worker, chaplain, CNA, nurse) and should call you regularly to keep you abreast of what's going on and what they see with their own two eyes.

End of life signs: Your mother could definitely be approaching end of life in addition to not getting fabulous care at her MC. Losing weight rapidly, frequent hospital visits, spilling water (bad fine motor skills very common with later stage dementia), more confusion in general pertaining to the food you bring her. I saw this to a HUGE degree with my mother in MC with advanced dementia during the last 6 months of her life; she forgot she had snacks that I'd brought her; forgot to ask for them, didn't know how to open the packages, etc. in addition to loss of interest in eating (which was always her passion in life beforehand).

I think you have several issues going on at once with mom: end of life activity, lack of hygienic conditions at the MC, lack of proper communication at the MC and lack of trust, all rolled into one MESS of a situation. What makes me happy is to know they DO send her to the hospital frequently; that means major issues are NOT being 'missed'. Hospice is a good thing for her now b/c they WILL give her extra care & more eyes on her in general; they will bring in a hospital bed/air mattress, incontinence supplies, oxygen, etc, whatever is needed to keep mom safe & comfortable. Get your hospice nurse's take on mom's condition; does she feel mom s/b moved out of that MC and if so, where? To a hospice facility? Because a move during end of life can be very difficult for the patient.

Get the Exec Director involved at the MC; let them know how upset you are at what's been going on; the lack of help feeding mom, the scabies situation (which you'd like EXPLAINED, please), the missing clothing, all of it.

To summarize my very long response; my mother had a dramatic decline during her last 6 months of life in Memory Care; she went downhill faster than a bowling ball down an icy mountain. Her Sundowning got so bad, she was insisting her mama & papa were there at the MC but she just couldn't find them. She wasn't eating (not the fault of the MC), she was delusional, losing weight (which is common with end of life activity), looking horrible/slumped over in her wheelchair, incoherent, unable to use the telephone which she used to love doing (talking on the phone); went to the hospital a few times with chest pain (they found nothing), spilling food and water all over herself all the time, just so many things were wrong 24/7. The last month was the worst. Then one day she just went to bed, semi-comatose, and passed away quietly one week later.

Seeing your LO wearing someone else's clothes and small items like a phone charger going missing are very common even in MC facilities that are reputable for high quality care.
The extreme weight loss and the scabies, well that isn't so common. Your mother is being neglected. They are not feeding her or keeping up on even basic hygiene care. This happens all the time in memory care facilities because the residents can't speak up and report neglect themselves.
I'd speak to a personal injury law firm if I were you. One that also offers representation for elder abuse/neglect in a nursing home.
Your mother is not getting quality care. She isn't even getting basic care and that's abuse.

Please read this.... The neglect and abuse in many of these facilities is off the charts! During the lock downs when we could not visit, my sister with dementia had a seizure. She quickly recovered, but without my knowledge they decided it was time for her to die! She was NOT dying ...they just decided they wanted the space and did not like having to care for her. She could no longer walk without assistance, so there was no way for her to get food and water.

They REMOVED ALL FOOD AND WATER! I kept calling every day. I knew something wasn't right from what they were describing. Finally I asked how she was eating and drinking. They said all food and water was being denied. I went frantic and demanded they rehydrate her. They refused and hung up on me. I kept calling back, finally they told me to talk to the head of the nursing staff. She said 'she won't eat on her own'. I said she needs help and has always gotten help the last few years. Then they came up with stupid phrase saying she is actively dying. I asked from what? Covid, flu, what? They said no and could not answer. I told them they were actively killing her. They hung up on me again. The following day she died from dehydration. I was told this is a legal method of euthanasia. They had no right to kill her. They were playing God!

Please get her out of there!

Your Mom may need a stay in a nursing home level of care to get more 1 on 1 care. If she improves she may then return to amsted living level of care, which is what most memory care units are.

Your mom is not getting good care. Take photos and videos. Document every visit. Report to the Social Worker, the Charge Nurse, and anyone else involved in her care.

She might need a different facility.

Unacceptable. I am dealing with a very similar situation with my dad in NH. If you feel that something is off, doesn't make sense / adding up, don't be afraid to speak up! Request to see or have a copy of all medical records, ask for labs to be taken and tests ran.
UTIs frequently do occur, what about dehydration, have they ordered labs-metabolic panel, complete blood count, how is her magnesium, phosphorus, calcium? Oxygen levels?
As far as the clothing not belonging and lack of clothing, I don't understand why that would be happening. I've noticed that with my Dad-I would see him and he would be wearing clothes that were obviously not his. There were many times when we would visit and he wouldn't be wearing his glasses, which is something he would never not wear- he's been wearing them for almost his whole life for a reason! When I would ask the facility I would get vague answers, there was a new CNA, they were out of his reach, not on night stand ( he needs the assistance of a last two people or a hoyer lift to get up out of bed and into his wheelchair). Same thing with his cell phone - family members would call and it would either go straight to voicemail or ring and ring and ring. We all knew that he had it in his hand at all times in case someone were to call or if he felt up to calling and that is how he'd been for years, even before entering the facility. A variety of excuses - the phone was dead hadn't been charged, phone charger was not working or broken, the phone was out of his reach, the phone was turned off, the CNA didn't know about his phone..
There is no good reason why an elderly parent should have to go without.
Bottom line, if your gut is telling you something's not right, call, ask questions, during visits take pictures, reach out to the facility social worker. They will look into any concerns and do what they can to fix any problems. If possible see what else is available in the area. Good luck!

It seems that you're having a hard time facing reality. Your mother is rapidity deteriorating in all aspects. No "proper care" will stop the final outcome.

That sounds crazy … obviously she’s not getting good care !!!!

My wife went through everything as you just said, but we kept her at home on hospice. We fed her - spoon to mouth until she stopped allowing that. Bought 100% Silicone bottles, blended at high speed, all cooked solid food. She got tooth and gum infection, antibiotics orally swabbed, swellings went away, but 2 or three weeks went by at the end when her whole body went stiff, no food, no liquid, body shut down. She kept pulling her legs up, knees to chin and over time we couldn’t properly change her diaper: inaccessible. For about six months she was in extreme pain if we just touched her or tried to move her. Nurse put her on morphine sulphate and muscle relaxant, but it all became futile. She got open bedsores, nurse tried, but finally we had to let her go. I talked to her, explained my torn emotions. Married 58 yrs. She was my everything.

None of this is acceptable care. Your LO needs more care than she is receiving and help with eating. Request a CarePlan meeting and establish a connection with MC social worker. Contact MC’s administration rather than call, use e-mail to communicate - you will then have documentation of your efforts and the MC. Take pictures and attach to emails. If you’re not satisfied with the response from the MC, contact the State and complain.

I just posted about this very subject. Title is "Moving Mom". A lot of the things you mention also happened at Mom's MC facility. I started doing her laundry after her first week there because they "lost" so many of her things! Of course, everything had her name on it and each resident's clothes were supposed to be washed separately, but lots of nice clothing disappeared. They even lost a set of her sheets!

The food they serve there is frozen and pre-made and usually fried. The caregivers do the cooking and no seasonings are ever used. Mom is also a picky-eater and had to be prescribed Megastrol to increase her appetite. After she fell and broke her hip there two months after she arrived, and spent 30 days in the hospital and rehab, she returned to the MC facility and it was never the same. Mom was not able to walk and had to be transferred to the toilet and in and out of bed and her wheelchair. In my opinion, she became more work than the caregivers wanted to deal with. There were only ever 2 caregivers there and one had to cook which left only one to care for the 14 residents. The general anesthesia from Mom's hip replacement surgery did a number on her dementia and she lost the ability to talk. So, if she did not say anything, she must be okay, right? Nope.

I visited every day. I knew the caregivers' names and about their families. I let them know how much our family really loved our Mom and how precious to us she is. Didn't make one bit of difference.

Every time I called to ask how Mom was doing, the answer was: "She's fine." She could be laying there bleeding out and the answer would be "She's fine." Nobody told me when she was not eating or drinking. There was very little communication about Mom at all, and remember, I am there every day. And, yes, I do ask questions whenever I can find a caregiver to ask!

The majority of people at Mom's "house" could walk, talk, feed themselves, toilet themselves and dress themselves. They seemed to stick together and never tried to talk to Mom or include her in anything. The caregivers did not "invite" Mom to activities, even just to watch the others. Finally it came to the point where one of the caregivers had to feed Mom every meal. Sometimes they did, sometimes they did not. I had to get her out of there. And, yes, I met with the Executive Director several times to discuss my issues/problems with the care. Nothing changed.

My advice: move your Mom out of there as quickly as you can. Most Memory Care facilities claim that they can handle various levels of dementia but I have not found that to be the case. After all, you only have to have 16 hours of training to work as a caregiver. That is two days of training! The facility had already taken the money out of Mom's bank to pay for March, so we are actually paying for TWO places at the same time. That's how bad I wanted her out of there. If you ask me, the MC facility should give her her money back based on the fact they were either unable or unwilling to meet Mom's needs.

Sudden declines should always trigger a test for a UTI. Was that done?

She appears to be on her way down. I'm afraid that nothing will stop her from this free fall. I think that relatives should be more realistic and not to expect miracles from the facilities. Demencia is progressive and nothing will improve it or cure it. The progression of demencia is unpredictable, but always downhill.

No this is not normal. Her clothes should have her name in them and returned to her room. Moms AL they washed the residents clothes separate. So, they wash, dry and return to the resident. No mixing up of clothes. The scabbies, they came from somewhere, another resident or staff. I would call the Health department and see how they would handle this. 40 lbs! They should be questioning why Mom has lost so much weight. There should be a nutritionist associated with the MC.

Since Moms clothes seem to disappear, I would wash them myself. Go to the laundry room and see if you can find them. If not, ask that they be looked for among the female residents Moms size. MC ur paying for so means residents can afford there own clothing. I put Moms clothing in sets. Then I knew what was missing. When she entered LTC I took pictures of everything she owned.

You need to sit down with the director and find out what is going on. Then u may want to consider another MC.