New to the group and new to caregiving for my mom with Vascular Dementia. Having a hard time. What do I do?

Your one and only concern should be that mom is getting the care and attention she needs and deserves. And if it's not at the facility she's in now, then you must look for another. I'm glad that you've changed up your routine, and are now going at different times of the day, as that really is the only way that you can find out exactly what is going on.
Because your mom cannot speak for herself, you now must be her mouth. My husband had a massive stroke at the age of 48 which left him unable to speak but a few words and a few short sentences, and any time he would end up in the hospital or rehab, which was often, I made sure that I was there from early morning until about 8:00 in the evening, so that I could be his mouth.
And no you do not want them to keep her bed all day if she is able to sit in her chair or even a wheelchair, so she can go down to the dining area, or even outside. If they keep her in bed all day she will decline all the more rapidly. You are now moms advocate, so don't be afraid to stand up for what is right for her and her care. I wish you the very best.

So, my mother has moderately advanced dementia and lives in a Memory Care ALF for the past 2+ years. The rule there is the resident is not allowed to stay in bed UNLESS they are on hospice care!! Yep, true story. My mother is dressed and out of bed & helped into her wheelchair by 9:30 am every morning so she can have breakfast by 10. If she's sick, she can stay in bed later than that, but even then, they try to get her up before lunch; otherwise, the pity party gets going and it can be very tough to get her out of bed at all, plus the meal schedule gets thrown off & they're not allowed to eat in their rooms. I like that rule, actually, b/c then the residents can't hide out and hermit themselves away in their rooms, either, which they tend to do from time to time. The idea is to keep them active and involved with one another; socialized, in other words.

As far as 'short staffed' goes, yeah, all of these places are short staffed, what else is new? The answer to that little problem is Agency help. Any and all MCs should be using agency's when and if the regular help are sick or call in sick for the day. It's unacceptable for the excuse 'we're short staffed' to ever be used. My mother's MC also uses a big white board for the caregivers where they post notes and updates on each resident's care notes. "Today make sure JoAnn gets a snack at 11 am with her meds" and things of that nature. So everyone, including agency help, are all on the same page regarding care needs and communication.

If you are going to move your mother, look for a NON FRANCHISED MEMORY CARE facility, that is my suggestion. The franchises are all after the $$$$$ as their bottom line goal. Privately owned MCs are after quality of care for their residents as their bottom line goal. I've had my folks in both types of ALFs and had to get them OUT of the franchise (Brookdale) when things went downhill in a hurry once the buy out happened. It went from a lovely place to a nightmare in a New York minute, where the only thing I saw were increases on the monthly bill and a turnover in management where none of them would take responsibility for the sinking ship!

Last but not least, make sure the new MC can handle your mother's needs; not all of them are capable and she may actually need a SNF. Don't ever be afraid to speak your mind to the staff at any of the facilities you are involved with. If you can't do that, something is wrong. You need to have an open line of communication with ALL the staff from the CNAs and QMAPS all the way up to the Exec Director and the nurses.

Wishing you the best of luck finding the best possible living arrangement for your mom. I know how hard it all is, honestly.

Get her out of there. They aren't dedicated to giving your mom the best care -- they're taking the easy road for them.

While I can understand the wheelchair part -- it's often what is resorted to in order to avoid falls -- the bed is not OK. My mother was only bedridden the last 2 1/2 weeks of her life, and that was at my request because her skin had become so fragile, the sling for the hoist was tearing it.

Memory care is all about stimulation, and if Mom is in bed, she's not in the common area getting that stimulation. She's isolated, and she's going to decline rapidly.

That place should be ashamed to call itself a memory care facility -- they aren't doing the most basic thing a memory care should do.

Hello, I would move her to a new facility if things do not get better. Be upfront with the facility. You have every right to queston the care your mother is receiving but I would talk to the person in charge and if you do not get anywhere with the charge person I would go to the director. I have reported a few aids, doctors, nurses for poor care of my mother in the ER and on the floor. Most of the health care workers were great but there are always a few bad apples which I will never tolerate when it comes to my mother. Do not apologize for being a good advocate for your mother.Good luck.

Don't say anything to them at the facility she's currently in until you have found her placement in a different one.
Unless you can be there all the time or have other people checking in on her all the time, complaining could make it harder on your mother being in her facility.
Find a better quality place and then have her moved. You do not have to give the facility she's in any warning or even tell them until the day she gets moved.
This is what I did at the NH my father was in. They weren't providing adequate care to him and weren't even decent. He had to be hospitalized and when they discharged him he went to a different facility. Just do it like that. Don't complain and do not tell them anything.

All I know is as her advocate, you have to follow your instincts. If you don’t feel it’s in her best interests to keep her there, then visit & talk to other facilities & move her. If it made her present facility uncomfortable & defensive then they probably aren’t willing to adapt & may harbor resentment to you for asking them to. To me, that means they are thinking more about themselves & their weight load more than kindness & care to their patients. If my mother had to be in a facility, I would want it to be a place where the residents care always came first.

UPDATE: Thank you to everyone who replied just knowing others that are going or have gone down this road has given me a little piece of mind. We couldn’t get her pain under control and the Dr feels her dementia has progressed so we made the decision to put her on hospice care. In doing that I was given the option to place her in their Comfort Care Center/nursing home. It is a little further from my home but only 25 min drive so not terrible. She seems to have done well with the move. But I fear the Dr was right. When they try to get her out of bed now she refuses screams and fights. She does wake for a while during my visits sometimes she is “with me” sometimes she isn’t. I did follow much of y’all’s advise and visited many nursing homes in my area. None of which I felt were right for mom. I again looked into getting in home care for her but with my brother I just feel that is too much for him to handle and watch. I have to be very mindful of the impact of this on him as well. I don’t wish anyone be in the position but I know many are in balancing their family with the care of a loved one. The old facility administration was actually very helpful with her move. CNAs weren’t vey helpful but that’s ok. The facility even gave me a refund for the days we didn’t use after I paid. I will never know for sure that I have made all the right decisions but I have to trust that I am doing what I fell is right for my moms care during all of this. I was with my father when he was placed on hospice but he had cancer (my step mother made all the decisions for him) and his time in hospice was more clear. Although I had hoped my mom would bounce back, I’m afraid that she has started down the road to leaving us. She made her advanced directives very clear in her trust so I know I am doing what she wanted. And in the new place they have made her comfortable without sedating her which is a very fine line to walk when you have a new pt. I am at ease in the new place and have been with mom everyday at different times to make sure she is getting the care she needs. As we all do, I wish my moms road was easier.
Again thank you to all who gave their advise and wisdom to a newbie who is just trying to navigate a path that is so difficult to go down.

I have walked this road - and my heart saddens as I had to take my mom out of stroke rehab for this reason - I was living at her rehab - my husband was taking shifts it was so hard. My mom was the one who paid the price by not getting the acute more advanced rehabilitation in the first few months and made her recovery much slower. But I am not here to discourage you as your Mom deserves to have access to quality care and quality of life and for her that is in a place that can offer her safety as well as activities and a staff that cares about her.
If you cannot find a resolve with the management of a better routine (other than leaving mom in bed) then I would suggest that you may have to move her - but where she is comfortable and likes it there maybe you can come to find a better way for her.
It is so hard the not knowing and not being there - I do know some states will let you put in a camera? I have seen people post about it here - maybe that would be an idea to look into.

Utis can change their personality so severe it’s awful to watch them go through that (I too had to learn about the signs which are usually behavioral) but staff should know what to look for and be on top of that as well - they are trained to do so.
I would again attempt to request a care team meeting - and even speak with the doctors and ask to have a team of staff at the meeting. Ask specifics and lay out what you want for your mom for daily activity and ask them to describe her daily routine. Another thing I have seen here is people report if their parent was asked if they wanted to get up and refused that the staff can not make them - so maybe ask that if mom does decline early in the morning if a few more attempts and encouragement are made in effort to get her up and involved in activities?

I feel for you as I have a very difficult time trusting those with my mom now after witnessing things as you have. At the start of my moms care it was for rehab after a stroke - she too was non-verbal and at that time wasn’t able to tell me what was happening - it is such a hard time when I realized and began to witness these things.

maybe even speaking with other families in there to see if they have any issues and maybe even looking into a private care a few hours a week to stop by when you cannot and make sure mom is up if you can afford to do so.

My best wishes and hope you find a resolution for her 🙏🏼🌷

I don't blame you at all for questioning why she is being left in bed all day. I think the others gave you great advice on finding another facility. A move may be easier in the long run then having to worry if she is getting adequate care. Sounds like a bit of laziness. It's much more difficult that she is non verbal. All the more reason you have her in a facility that you know the care is five star. Must be a really tough situation to be in. Welcome to the forum! It's a great platform to ask questions, get advice and just vent as needed! We all are really here to support one another through the caregiving journey!! Best of luck:)
Love & light, Kelly

My Mother's behaviour changed a few weeks after the initial stroke. I could not tell if another stoke or what - an extention to the stroke, maybe additional micro bleeds, situational depression, emotional liability or now vascular dementia (I looked into it all). The nurses didn't know, the Docs didn't know. Still don't know.

Your Mother's UTI would have scrambled her thinking & behaviour. This may have started a negative snowball effect. Grumpy with staff, staff less joyful, refusing to get out of bed, staff insist etc. Without ability to clearly say no, or express my wishes, physically resisting being moved out of bed is how I would probably communicate too. A professional CNA would know this & look to re-establish trust & connection.

There is a world of difference between someone marching into your bedroom, pulling open the curtains, booming "Time to get up now", covers pulled off, being turned to sit & expected to participate... and being allowed to wake gently to the sunlight, being alert enough to smile hello, being asked to sit in a chair & agreeing to that plan.

IMHO you either got it or you don't! Common sense & a caring manner. Many CNAs do it because they love to care, but others just need a job, it's temporary, pays the bills etc. The culture of a place will trickle down from management. Maybe meet with the Nurse in Charge/DON (whatever title) for a meeting, with aim to improving the resident-staff relationships?