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

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Can you go during the week? Or can someone else go and sit with her all day. Observation is going to be how you find out what's going on. And don't tell anyone what day you'll be there or what day you're returning. Maybe even leave for a while and then return same day.

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.
Helpful Answer (13)
Reply to my2cents

My heart goes out to you, especially as I have experienced exactly what you describe, and I know your desire to do your best for your mom, and your frustration and fear that you have made a mistake. This is one of the hardest choices that we ever have to make, and we literally are just feeling our way through day by day, trying to decipher clues from our loved ones, and from what we observe in the facility. I too, placed my mom, in what I thought was the best place. Four years later, she is still there, and she is settled and content, and I am very happy with her care. I know how things work. I understand what I need to be tolerant of, what bothers me and does not bother my mom in the least, how the staff really cares and tries, but sometimes fails because they are human, and just in general how to make the best of a situation that I wish none of us had to deal with, most of all my mom. That said, here are some things that I would say to you. 1) If at all possible, go often. Go at different times of the day and stay for different lengths of time. Be positive and praise the staff for all that they are doing right. Be pleasant and helpful. It will pay off for you. 2) If there is a problem that needs to be addressed, take it up with administration, and be firm, yet be as kind as you can be. Don't blow up, but be determined to get a resolution. Tell them how much you appreciate them and what you appreciate, and then tell them what needs to change. Be someone that they don't cringe when they see. 3) Participate as much as possible in any extra activities that are offered. 4) Basically, be a squeaky wheel, but one that people don't mind hearing. Your mom will get better care. 5) Your mom will change over time. My mom has gone from being unhappy there, to being ill a couple of times, each time deteriorating mentally, which is very normal, and each time becoming more content with her circumstances, even as she recovered physically. Now she is as happy as possible in what is her world, and she feels secure. Covid taught me that the facility is to be trusted. I could not see her, and they communicated well, they took excellent care of her, and by the time I could see her again, I knew that she truly was in the right place. It was God's timing for me, because we had to move across the country, and now I can see her only every few weeks. Because of the relationship that I had built with staff, I have credibility, and good communication with them. When I go there now, even if they are closed for some reason (positive covid occasionally) they always make an exception for me and let me in. In NO way do I want to make this sound easy, nor to make you feel like you are doing anything wrong. This is a PROCESS. I could not have done this overnight, and I have cried many tears, and have felt so frustrated and struggled through many difficult situations. I considered moving her at times, and I even looked for some places, which in itself made me feel better. But I stuck with it, and worked through it, and now I am glad that I did. Not every facility is worth doing that for, but this one was. I wish you the very best, and I want to encourage you. It will get better. I have come to terms with the fact that my mom is perfectly happy not seeing me often. She doesn't know, and she's thrilled when she does see me, but it's as though I was just there. Then I leave and she's back to her friends very happily. That is a BLESSING, and I would not have her any other way. I am fortunate, and I wish you the same.
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Reply to AstaLea
Anche71 Nov 16, 2021
Thank you so much for your answer which is healing.
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
It might help to contact the family members of someone else there. They can give you their experience over a longer time frame. You may also find out more about the routine of the facility – doctors and particular management staff won’t be there all the time, and it will help if you know when.

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
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Reply to MargaretMcKen

Anche, if I couldn't connect with personnel, an Admin, or the DON, I wrote a letter (obviously saving a copy) and delivered it to the receptionist to give to one of the admin staff listed.  

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.
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Reply to GardenArtist

Anche, one thing that I learned by watching from hiding places. The situation was never as bad as my dad told me. If fact, he was usually having a pretty fine time.

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.
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Reply to Isthisrealyreal

Try not to worry too much. Firstly it will take longer than a couple of weeks for your mum to settle and you need to wait. Then if after a few months you are still not happy then consider it. It took my mother ages and she said she was not happy but she was not happy at home either! It was her dementia not her environment. Interestingly when I observed her unaware she was chatting amicably to other ladies or was singing! But as soon as I appeared she complained.
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!
Helpful Answer (8)
Reply to wiseowl
Anche71 Nov 16, 2021
I know I have to learn to "let it go", not to worry too much. I will ask my therapist if we can work on that. Being an only child and an orphan since when I was almost 11 made me be the one in charge of my mom health on my own for the last 18 years, when she almost became blind.
I want to collaborate with the staff, what I am complaining is actually a lack of communication.
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Bad news
I went to visit her. I was supposed to see her at 11.30 and as usual I was there at 11.20 to have my greenpass checked and to fill some papers as an aunt came with me.
At 11.45, my mom was not to be seen. I so asked the girl at the reception. This one had just arrived, the one who opened to me, checked the pass etc. was just staring at me... So the just arrived receptionist called the ward to see what was happening: my mum was vomiting and have diarreah this morning. So they would not take her to meet me.
I calmly told them they have a communication problem. If I hadn't asked I would probably still be there waiting.
She offered to organize a video call which I accepted.
At home (I took some hour off from work to be there this morning), I called the social worker of my town to ask what to do to move mom and I then wrote an email to the facility.
I sarcastically said I know my mom is not their only client, but they could have told me when I arrived there would have been no visit instead of staring at me waiting for me to ask...
I am really angry... with them and with myself for having believed their marketing strategy !
I thank you all for the replies, I will try to answer to everyone... but for now I want to let you know that I really appreciate your support.
Helpful Answer (8)
Reply to Anche71
Isthisrealyreal Nov 17, 2021
Anche, you should also file complaints with whatever agencies oversee facilities in Italy.

I give you credit for not ripping the idiot a new one, what a mindless pos she must be.

This is really difficult but, you now have more information to proceed. That is the benefit, you know what questions to ask. I would put them in writing and require they be answered in writing, this is easily done with email.

I am sorry that it is working out like this.
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Call the administrator of the facility.

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.
Helpful Answer (7)
Reply to Taarna

I went through the same feeling. Even researched other facilities but then Mom asked not to be moved because she didn't want to start over. What helped most was changing my attitude, saying please and thank you, showing up whenever I could and making sure if I couldn't be there a family member or friend came everyday even if only for a few minutes. I met with care team face to face whenever possible . My mom passed in September and I still sometimes wrestle with did I make the right choice but find peace in knowing I did what I thought was best at the time.
Helpful Answer (7)
Reply to ReesChild
Anche71 Nov 16, 2021
I am sorry for your loss, my most sincere condolences and a big thank you for your reply : it really helps!
Greetings to you Anche71 in beautiful Italy! I would love to get back there at some point. Wonderful country and people. I have a bit of a hard time navigating the forum so I'm not quite sure what type of facility your Mom is acutually in (and I was too busy visiting restuarants and galleries in my youthful visit to check out medical facilities when I was there). If it is the equivalent of an Assisted living in the US, it is very possible that there are days when an RN is not on site and you only have aides available who may not have access to medical charts. Any therapists on site may only have access to their PT charts. I would like that there would be someone (Administrator or Assistant) who would be available to at least address your questions (although in the US Administrators are frequently not medically trained but they could at least access medical records). If Mom is in the equivalent of a US nursing home.... I would think that they would be the some type of medically trained nursing staff who could access the medical records on site at all times.

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.
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Reply to geddyupgo

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