I was a live-in caregiver for my mom for a year before placing her in memory care. It was very difficult in the beginning because I was so used to taking care of her and I was terrified that she would be miserable and not taken care of. There was definitely an adjustment period, but my family assured me that living in MC was best for her as they specialize in caring for people with dementia in all stages. After a few weeks, my mom even seemed to enjoy living there. She is very social and at the point she became a resident she was pretty high-functioning. She was ambulatory and frankly in pretty good health, other than her cognitive decline. There were things that I noticed that bothered me at first, she was always wearing at least one item of clothing that wasn’t hers, sometimes her clothes didn’t look too clean, I bought a number of phone chargers and they would always say she lost hers. I figured that these were just issues that probably happen a lot at memory care facilities, and I just needed to trust that she is in a safe place and well taken care of.
On Christmas Eve I got a call saying she was going to the hospital for abdominal pain, she stayed at the hospital for 2 days and was released. They couldn’t really find anything wrong, she had low potassium levels, so she went back to her facility. It’s definitely hard to communicate with the facility on most days, or get a call back which has been a problem from the start. Things started happening pretty quickly after that. She usually gets 2-3 visits a week from family members. We take her out to lunch and shopping etc. Beginning last month, she started passing out whenever we tried to take her out, she goes to the hospital and they don’t really find anything wrong, they give her fluids-they release her. She has been to the hospital 5 times since Christmas Eve. She has lost so much weight since she’s been there, she is so weak. In 5 months she has lost at least 40 lbs. She has always been a very picky eater, but I have been bringing groceries with tons of things she likes that are easy to eat. I was only allowed to see her room last week (Covid policies) because she fainted when we went to visit. She looked horrible. I asked for water for her-they brought in a full pitcher with a paper cup. She gets confused when eating or drinking. She spilled the water all over herself and her bed 2x. So I went and bought a bunch of small water bottles and kids cups. So, basically I feel like she is having trouble and gets confused about eating and drinking. It doesn’t do any good for me to buy her food if she doesn’t remember she has it or even how to open packages and she seems like she has forgotten how to actually eat. We have noticed this on visits and help her eat and drink, but im starting to realize they don’t do that at the facility. They always say she refuses to eat, but I think she needs assistance. I never dreamed that she wouldn’t be getting assistance. Surely they encounter this, it’s a MC facility for all stages.
She also had what I thought was a rash at first. It’s scabies. They said they can't be positive because they can’t get a dermatology appointment, so they are treating her for scabies to be safe. And that we shouldn’t visit for 7 days just in case. Waited 7 days, saw her this last weekend, she is covered in scabs, even on her face. When I was in her room she didn’t have one piece of clothing in her room. Is this normal? Does this happen at facilities? We just began hospice care last week, I have been working with her case worker, she is awesome. Will hospice care take note if she’s not getting proper care? I’m so confused, I thought I was trying to be too involved and that I needed to let go a little and have some trust. I feel so guilty, she looks like she is on death's door. I feel a little more confident now that hospice is involved, I just wonder if anyone has had any experience with this. Thank you for reading, sorry for such a long question.
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.
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.
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.
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.
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!
She might need a different facility.
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!
Your wife has been released from her hell, and I am certain she also would wish you to release yourself from your tortured memories.
I pray that as time passes you will be able to remember all the good years.
You have my sympathies.
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.
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.