Well as I wrote mum entered the facility on the 4th November. She is confused which is normal. I had her on the phone yesterday and she was fine. I went to visit her today. Just like on last Sunday she was in a very bad mood and then she started whining almost crying. She said a woman died just next to her and she was left there for a long time. This may not be true, as she is confused. But the I saw her right thumb was really swollen, it looked like an infection. I was there on Thursday and her thumb was fine. Today there was nobody to talk to, no nurse, no doctor… an assistant I asked told me the doctor will visit her tomorrow.
I also asked last week to talk to the doctor just to know how they will go on with rehab. Mum first said she isn’t doing anything, then she said she is doing a little then she said again nothing.
I know her brain is not working properly. That is why I need to ask someone. But nobody is available.
I feel terrible. I am afraid I made the wrong choice. I chose what was supposed to be the best facility and it is the most expensive. I feel like I should at least look for another one.
Once again I think I will be able to rest only when one of us dies. And I do not care if I am the one.
I am depressed I now realise it. If I take her back home I will get worse and worse but wondering if they are really taking care of her, thinking that professionals are neglecting her and that I am the one who put her in their hands is not helping either.
I feel so lost. And it feels like I have the whole world on my shoulders.
Thank you for reading me… I feel less lonely
I would make sure that you're there tomorrow when the doctor is there, and make sure you ask all the appropriate questions to not only the doctor, but the physical therapists, head nurse etc. And if need be accompany your mum to her PT sessions so you can see for yourself exactly what is being done(or not done)for her.
I'm sorry that you're having these doubts, but I think more time is needed before any major decisions should be made.
You did what you knew needed to be done in your heart of hearts, so wait until you talk to all the appropriate parties, and see if you don't feel better about things. Best wishes.
Don’t feel so bad. It’s a big adjustment for you, as well as for your mother. You are handing responsibility to other people you don’t know so well and who you can’t immediately trust. Find something to do, so that you aren’t thinking about this all the time. If mother isn’t in immediate danger, there is time to step back before you are sure about making any change. Love, Margaret
Someone at that facility should have been able to read her chart and tell you what the finger infection was all about. They are supposed to note those things. It is very possible a dead person stayed in a bed for a long period of time. Usually after being pronounced dead, the body has to wait for the funeral company to fetch the body. It can definitely take awhile.
Don't feel guilty. The most expensive, beautiful facility can be run by a bunch of slackers. All you see when you visit is the pretty package tied in a bow. The thing is to show up at unexpected times and OBSERVE. Things like how long it takes to come in and help a person after the buzzer goes off. - And pay attention, not just for the person to open the door and say what do you want, but for the person to actually do what needs to be done. Needing to pee for 30 minutes is not acceptable. I observed the staff opening the door and turning off buzzer (as a response timestamp), but saying I'm in another room and will be right here. They may not return for another 30 minutes to an hour - or until I rang the buzzer again. By then, the pee was in the pants and not at all acceptable to me because she got there being able to get to the bathroom and did not wear a diaper. The facility showed me response times to show they came to help my mom within a few minutes until I produced a log I kept of how the staff were managing to get such quick response times.
If people are not available, that can answer your questions, that's a good indicator the people there are weekends have not been given the tools to assist patient families. You might want to consider this the first strike.
Most residential facilities have
- medical aides/nurses aides/certified nursing assistants that do the majority of the care for the clients,
- licensed practical nurses who give medications and do evaluations of clients,
- registered nurses who run the facilities,
- administrative personnel who are available to talk to families Monday through Friday during the day.
You should always be able to talk to a nurse who can let you know about your family member. Don't expect to get any answers about other clients since that violates their privacy.
Make sure the doctor evaluates your mom's issues. It usually takes a few weeks before a new client with dementia starts to comfortable in their new "home." As long as your mom is healthy, give her time to adjust.
If you do this, address the swollen thumb specifically. You might also just state the issues of concern, and ask how (not if) they can be addressed, and what the options are.
I itemized issues of concern. I also provided home contact numbers and when I would be available.
Given that this was the best facility, I would try to establish a contact in the admin staff so that reporting can be done directly to you. You might even create checklist as to issues so the staff doesn't have to write them out.
As to the visiting doctors, my experience was that they typically had specific days of visit, but times varied.
However, you could also write a letter to the doctor and ask him/her to contact you either by phone or e-mail. Raise the issue of the swollen thumb. Or ask if he/she (doctor) will be working any evening hours, or weekend hours so that you can plan care more specifically.
That raises another issue: has there been a care plan meeting yet?
Also, check your e-mail, in a few hours, or tomorrow.
I don't think your concerns and queries are out of line; you're insightful to consider these issues.
I would try to make phone calls during regular administration hours but, I would be worried that nobody is available to answer your questions every day. That's the whole point of facility care, 24/7/365 care available. Find out what is going on. If you aren't feeling like this is a good care facility, follow your gut and start researching other facilities.
I think finding another facility is a good idea. Not that you need to move her, just in case you decide that she isn't getting the best care possible. I did have to move my dad because the level of care was unacceptable, they were a for profit company and didn't respect their residents. That wasn't something I was willing to subject my dad too.
I know that cost and nice furnishings do not mean a good care facility. One that cares, even if it is a bit worn, as long as it's clean and the staff care and you see that care in their interactions is really what you want.
I want you to known that placing a parent is the hardest thing most of us will ever have to do. I can't tell you how often I bawled like a baby leaving my dad in the 1st month's. So much 2nd guessing, so much feeling like a jerk because I could not provide him with the care he needed, so much guilt because he intentionally made it seem like I placed him in hell. So I hear your struggle and totally understand.
I think that learning our parents will and do lay a guilt trip, even when they are mentally gone, they know how to do that to us, helps us not feel so bad.
Picking what is most important in her care and advocating for that, choosing battles wisely is super helpful. You will see proof of what she is saying, if it is true, weight loss, lethargy, looking dirty, like gross finger nails, oily hair, etc. Bad care shows itself. Right now she is trying everything in her book to get you to take her home. Don't be surprised if it escalates, she is trying to find the button that gets her what she wants. So try not to engage with her about dealing with issues. A simple, "I'll check into that." Will keep her from seeing that she is wearing you down and hopefully, it will change the application of FOG techniques. Then you deal with concerns without her knowledge or input.
Knowing that no one else is going to jump every time she hollers is okay and while she might be mad about it, it won't kill her. Don't let her think that they should hurry when she calls, let her know it takes a few minutes because they are helping others.
Most importantly, take care of you right now as you get her settled. Know that it takes time, you may have to move her to ensure the best care, that is okay and know that as hard as this is, it really is what everyone involved needs to survive this season of life, because you matter as much as she does.
Great big warm hug for strength to get through this difficult transition.
I will go to see her on Wednesday morning but I will call today (it is 5. a.m in Italy now). I will talk to the social worker of the facility, the one I talked when I was told my mom was the first one on the waiting list.
I have chosen this facility because an old school friend has her dad there since March and she is really happy with it.
I tried twice to have some information about a plan for my mom. At the reception, they filled a form with my data and they told me they will fix a phone call with the doctor. But nobody called me not even to say it is too early, give us another week…
My mom was right, her roommate died... The nurse said it to me when I finally talked to her yesterday.
I know I can't have answers immediately, but I saw the blister on Sunday morning, it is Tuesday and I still do not know what it is, how she got it. I know my mom is not alone, but this silence is hard to deal with.
Last week I asked and filled a form to know it they had started with the rehab programme, but nobody came back to me. It would not take a long time just to say yes/no/we'll start next week.
It is part of my personality I have to work on : I need to know not to panic.
What is making me worry is this lack of communication. Luckily I could talk with the nurse yesterday she had seen that big blister on my mom's thumb but she was waiting for the doctor. Which is probably what is giving me a bad opinion : the doctor did not show up. Probably it is nothning serious, but a 10 seconds phone call saying, we notices the blister, it is nothing serious and we are trating it who have helped me. I was supposed to know someting this morning but for the moment, nobody called (it is 14.00 here).
I think communication is really important to start with the right foot... Well, I work for a magazine... so communication is my cup of tea ! Lol
Phoning is often better than trying to get staff to talk when you are there. Make an appointment for a face to face if you want a longer meeting.
Good luck!
I want to collaborate with the staff, what I am complaining is actually a lack of communication.
Covid is making everything much more complicated as I have to book my visits.
I moved my mother twice. Once into a beautiful assisted living with dementia care (that she agreed to) and she was over the top with lying about what was going on. She eventually settled down, but she always hated being there. Then she declined and was moved to LTC where the staff has been very communicative. Initially she resisted all efforts by the staff to help her settle in, and started up with her stories. But she has settled into a regular “disagreeable” state.
I have a good friend that cared for her mother in her home until she couldn’t physically or emotionally manage it anymore. They had a wonderful loving relationship, but her mother’s dementia and physical needs made being the sole caregiver impossible. She moved her to a local LTC and her mother would cry and beg and plead to go home every time she visited. It was very hard but my friend understood that her mother was safer at the facility.
it would be perfectly okay for you to reach out to the administrator of your mother’s facility and discuss your concerns about needing more communication from the staff as this initial adjustment time has been stressful. And remember this is an adjustment for you as well. Make sure you are included in every care plan meeting. My mother’s visiting doctor has technology that allows me to read the progress notes when they visit and also communicate via email with her providers. That has been helpful. I heard you loud and clear when you said “if I take her back home I will get worse and worse.” Please care for yourself and continue to seek counseling and support. All my best during this time.
What are the regulations where you are? Here in the USA there has to be a Nurse available.
The fact that there is no nurse would have me concerned. What if there were an emergency? How long would it take to get a Nurse or other medical help?
You mom is confused. She will continue to be confused so some of the things she says should be taken with caution.
People die in facilities just as they die in Hospitals, at home and anywhere else.
Leaving a person I would think would be standard until they can be "officially" pronounced. And if there is no "official" staff person that can do that the person must remain where they are. Now the staff could have done a number of things to make it less traumatic for your mom.
Injuries do happen. And it is possible that they and you will never know how the injury occurred. But leaving it possibly infected, untreated is neglect.
Moving mom is your call. I would be more than a little concerned if this is what has happened in such a short time period.
Not an excuse but all facilities are short staffed and the staff that is there are working hard.
The only thing that I would do is go by my gut feeling, if you think she should be moved then begin looking. Make the best decision you can based on the information you have at the time. Don't second guess yourself.
In any event as others have mentioned it's been a very short time so some anger and disorientation on the part of your mother is very natural and to be expected. I am so happy to hear that you are speaking with a therapist. It is hard being an only child (yep... I'm one) because it all falls on you (although I have seen the fights some families get into that have made me very appreciatiative of being "the only one", lol) but remember that in oder to care for Mom you have to take care of yourself first. I mean.... who will advocate for Mom or your child if something happens to you??
So take a deep exhalation and attempt to relax a little. You did a good job my getting your Mom to place with more hand to care for her. Yes, it always helps to have a contingency plan just in case it is needed but give Mom and yourself to really find out how this place works and the lay of the land. All relationships need time to be established. Please keep us updated on things.
Hugs, Prayers and Peace to you.
Lover Ones seem to get worse especially with depression. If the staff is bothered too much, they will want to put the Loved One on Meds telling you it will help them but in reality, it only keeps them quiet and zombie like to make it easier on the staff.
All Nursing Homes present their best to you when you tour then, they are making a sale for your business and you're told what you want to hear.
The Best Place for your Mom is to have her home with you and hire Caregiver Help.
Install Nest Cameras as I did for my Dad as he is living in his own home with 24 7 Caregiver help.
I had my son install the Nest Cameras and I can view what is going on 24 7 from my Cell phone or laptop.
If you have to put your loved one in a Nursing Home, you really need to go visit them every day and at different times.
Prayers
I was not allowed to place a camera in my moms SNF for her rehab stay after her stroke (after finding eggs and bruises on her head and her roommate telling me they were mean to my mom the night before) we then had to do shifts in sleeping there with friends filling in a few hours a night so I could sleep and advocate and learn all day. My mom was non verbal after her stroke and took a few months with speech to talk again - I still feel sick not knowing what she endured before I started sleeping there. I witnessed many begging to be washed up - treated as if they “could wait” buzzers ignored and people left with meal trays they couldn’t reach - food that was not cut up - sitting in soil waiting to be changed. There is a very different level of care needed for those whom have higher needs and the options for these people do not exist.
I am sorry if someone got defensive with you as you have every right to expect proper care for your loved one. Best wishes going forward.
Still, I look back and think I made the best decision at the time...didn't know that she would pass away so soon after placement. Similarly, cut yourself some slack...you are doing the BEST YOU CAN!
I would keep an eye on whether Mum gets any UTIs (not being changed, cleaned frequently enough); whether her bedding is clean; whether you spot any infections, sores or bruising; whether she is eating (go visit when a meal is scheduled). And of course, if video cameras are permitted, go for it!
I'm not trying to minimize your concerns, but contextualize them.
It helped me to talk to a senior advocate organization to get their sense of how this facility stacks up against the others (as well as to talk to hospice once they began to visit my mother as well, as those nurses have a lot of experience). Some of those organizations are vultures, but we probably lucked out that we were recommended a very good senior advocate org. in the Atlanta area (Atlanta Senior Advocates--basically a placement service). ASA was AMAZING, but again, my sense is that's not the norm.
Frankly, we're also using a really good hospice org. in part to fill in the gaps some in my mom's care (with her approval).
EDIT: Oh, wait, after I wrote I noticed you live in Italy. Not sure how much of this applies then, but I'll leave it in case it's helpful to others as well.
My Mom’s facility tried to gaslight her and faked documents to make it look like they were providing showers, etc. when they weren’t. I had to 100% keep on top of it.
If you have paid a community fee and want to have it refunded, documentation might help when that time comes. See if there is a social worker who you can talk to. Many facilities provide that.
Everyone says make sure you take care of yourself, but that’s hard. They don’t understand that it is hard to do when you are giving what you feel you need to give to take care of your loved one. But at least, try to do that. Find a way to give yourself breaks, or talk to a counselor.
And rest, knowing that you are doing the very best you can under the circumstances.
Don’t try to take your mother back home.
i was a nurse aide in a hospital for a number of years and often felt i was not giving good care.
i remember one night going to a patient’s room to take her to the bathroom. When i got done her roommate wanted her turn to go. Sure. Why not. Thats what i was there for.
i came out of the room and lights were on for 3 other rooms. That meant 6 patients who i was sure were all uncomfortable and had to wait.
yes. I got everybody taken care of but felt really bad it took so long to get to each one.
this was nothing unusual ... it just seemed to hit me that night how difficult it is to be a patient.
On a different note (but similar in nature), I recently needed to speak to my neurologist. I called him, only to be told that he was out of town. I advocated for myself by asking who the "covering" physician was. THAT physician returned my phone call in under five minutes' time.
Personally I would research other places and compare reviews with the one she's at with those. The place she's at sounds like where I work and I would not want my mother or family member to have to live where I work.
One good source for researching nursing homes is medicare.gov/care-compare. You can research hospitals, doctors, as well. The nursing home reports are very informative because it lists all reports on the facility (abuse, safety, staff ration per patient, quality of care, etc). It's a very accurate source of information that will help you make the right decision for your mom and you.
Your state should have a senior citizen linkage line or senior ombudsman who can help you get answers if the care center doesn't.