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
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.
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…
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.
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.
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.
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.
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
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.