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

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 🙏🏼🌷

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.

What are the three explanations you've been given? Bear in mind that none, one, more or all might be true at different times. And there could be other factors too.

I do not envy your position.

How much is it possible to gather from your mother about what she wants included in her routine?

What does it say in her care plan (or support plan, or whatever it's called in this facility)?

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.

Update: So yesterday afternoon when I went to visit and of course was not expected mom was in bed. Probably had been all day. I find out that after my talk with the director the staffs response to my concerns were to leave mom in bed for 17 hrs. I am at a loss!!! I've cried and cried everyone knows moving someone with memory issues is very disruptive but obviously that is what has to happen. There are not very many memory care places near me so visiting will be made more difficult. I hate everything about this!!!

Chiming in the UTO piece of things, as we've had lots of experience with my mom on that. My mom got so many UTI's that eventually the oral medications were no longer effective. The doctor told us that over time one builds up a sort of resistance to them. (I think that's the right term.) Anyway, from then on, she had to receive treatment through an IV, and I wonder if even that over time loses it's effectiveness. Just one of many reasons that I always tried to get my mom to drink plenty of water, but she just wasn't.

The only other thing I'll say in gentle reminder (please, nobody lash out), is to take with a grain of salt that sometimes places may be short staffed due to all the issues with COVID. In Maryland at least, if a staff just tests positive, they have to quarantine for like 10 days. So picture that happening with several staff at your facility, and they're still trying to meet everyone's needs. My dad, before he passed, was very heavy and also weak, so that had to use a mechanical device to get him out of bed. And it took two staff. So we understood if somedays that just wasn't possible.

I wish you the best in whatever you decide to do.

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.

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.

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?

Since you have problems with your mom getting consistent care, you should have concerns. Generally, every client in long term care should be encouraged to do as much as he/she can do for himself/herself. Since there does not seem to be a consistent plan of care for your mom, it might be a good idea to start researching other places.

Sometimes it is actually hard on a resident to get them out of bed without a sit to stand or hoyer lift. Since they can't use those there, apparently the staff has been told they do not need to pull on your mom' arms, etc. to get her in & out of bed- ? Maybe it hurts her. If she is pretty much dead weight, staff may injure themselves. Happened to me!
As a former cna- it wasn't up to us to just leave someone in bed all day. There must be a reason, maybe she is resistant? Also with dementia, she may happily pop out of bed one day, and be fighting (for lack of a better term) w staff the next.
You, as family can request a meeting at any time. Or speak with the nurse manager. You will not be "hated" for wanting the best care! We respected families who spoke their piece, more so than ones who never came. If you want her out of bed daily, say so! Most likely tho, skilled is probably in the cards. And that's ok. Same activities etc. Not very different from AL.

Unfortunately facilities are short staffed and the caregivers are paid all that much. When mom and dad were in AL there were some good caregivers. One of the night and one on weekends; the day workers were ok then gone and they got one terrific day person - the rest were not so great. I would ask the staff questions, but if I had a problem I took it to the director and kept the staff out of it - I let the director then work on it. Dad's been gone 2 years now and mom is in a new facility in IL.

If you are getting different answers you may want to climb higher up in the food chain and take your concerns there; include the social worker as well. If you are not satisfied then look for a different facility that fits your mother's needs better.

I've had kids I grew up with that were downs or otherwise mentally challenged. Two of them went to live in group homes and from there went to their jobs. If there a possibility of your brother fitting into a situation such as this. One boy I grew went back to live with his parents when they got older - I believe he assisted them in some areas.

You have a lot on your plate and you need to find the time to care for yourself. Once you get your mother settled either where she currently is or in another facility, please take some time off for yourself - pamper yourself and take a deep breath.

I pray you and your family is blessed with peace, grace and love.

get a nanny cam to see what is really happening...i have heard of families doing this due to issues...just check your local laws first...

Does she qualify for hospice? It might be worthwhile checking out. They can go to the nursing home to help care for her, and can be extra hands for you. Keep in mind they can't be there all the time.
Some facilities just suck, and I would suggest moving her in the long run. I know it is stressful, but consider the long term stress on you & her by staying there.

Please remember that assisted living facilities and memory care facilities are just types of businesses. You are the customer, and have every right to get the services for which you are paying. If a clear plan cannot be decided upon and executed by the facility where your mother is currently housed, you have every reason to look for another. I hope you are in a large enough urban area that you have some better options. If your mother is already in memory care, she will not remember how often you are able to visit. A better facility may be found farther away from you that does not require your constant intervention, appeals, and oversight,

If you can have a wifi camera installed - do so. Go with your gut. Your Mom's well being is way more important than someone's miffed feelings. I get so angry when people say health care workers get paid so little and are overworked - that's their job-they chose it! . You are your Mom's only advocate - do it with conviction and be relentless. The squeaky wheel gets the oil. In my experience, most of the elderly are confined to a wheelchair or bed, not just because it's way easier, but also due to fall risks & liability issues. That said, if things really aren't to your liking, then find another place that will adhere to your needs or at least be more transparent. Your Mom will eventually adjust just fine anywhere if she being treated well.

I agree with being present with mom and installing the wii fii camera as mentioned below.

Have you met with the social worker on campus? Maybe its time for mom to be accessed and speak with the physician there. Can mom start PT and OT there? Something more stimulating for her day.

Not sure how old your brother is but to help could you find someone to spend a couple of evenings with your brother?

At the pace you are going exhaustion is around the corner. Get as much help as you can for yourself.

It may be time to find another memory care.

Prayers and best wished

I would start looking at different facilities so you have options. You may want to consider a NH over assisted living since she appears to be at least starting to have mobility issues. NHs generally cost more than AL facilities, but AL facilities generally do not want to keep patients who become bedridden. If she can still ambulate and her fall risk is low then it is well worth it to keep her mobility. From what you described, it really seems that walking without a great deal of assistance is becoming more of a thing of the past. Sad - but likely true. My mother became bedridden last August. We manage to get her up in a chair every day with. Hoyer lift. If the AL you are in would be willing to move her to a chair and sometimes a wheel chair to take her for a walk that would be great. She just can’t stay in the chair all day - probably 3 hours max. Then back to bed where she will need a change of position every 2 to 3 hours. If they can’t or won’t do that you need to find a place that will. She will be at risk for bedsores if she can’t shift positions several times a day. This is all very tough - I wish you the best in solving thus problem. Seems we are constant problem solvers - that is the life of a care giver.

These are not easy situations -
FIRST . . . . YOU ABSOLUTELY need to take care of YOURSELF. Do not go at your every free moment - as you WILL burnout and not be available for you or her, or your family.
* If you can, research other locations for placement. Observe, talk to other patients or families of other patients.
* Will the long. term health care pay for caregiver in the facility?
(or is that doubling up?)
* Certainly, with dementia - each day or some days, care needs could be different. It is not a steady or even decline. Medical needs are up and down.
---- And, abilities to move /walk/function change based on medications given. Absolutely check on what meds are given and ask for a print out of the meds and what each med is for - this happened to my client. She is stabilized now although it took awhile. And, the process of figuring out what meds are needed presents different behavior due to how it affects the brain / body. Ask the physician there.
* And, do talk to the MD in charge, not just the administrator.
- I would recommend you cease focusing your frustration on the caregivers / aides as they 'may' react accordingly with your mom. You want to encourage them to do what is in your mom's best interest by either talking calmly (if you can) and if you can't - talk to their supervisor. In essence, you want the best care for your mom and the aides will provide their best when they feel good about you/your mother. Of course, they should respond to each patient the same no matter what the family says ... This is reality.
* If you could / can, apologize to the caregivers - and say you are concerned and upset and that you don't mean to take it out on them. You don't want them on the defensive, which certainly is very easy to do in this situation. (Don't blame yourself, just adjust your thinking and behavior towards them. This is a learning process for you, too).
* Yes, it is a lot for aides in any setting to manage handle / with case load and emotionally managing dementia communications/acting out.
- Some are outstanding - amazing. Others want a paycheck. And income is low and generally so it their education level. This is very hard work. (I manage care for elders and offer direct service).
* Did you check on this particular facility to see if any reporting has been done - due to wrongful / inadequate care? Call an Ombudsman and check and/or ask them to assist you / advise you.
Gena / Touch Matters

It’s important to stand up for your mom as she is voiceless. Yes, it truly is uncomfortable to do it, but necessary! I also brought the poor response of a caretaker (she was very rude to me when I was talking to her about dad on the phone) to the attention of administration in my dad’s facility (dad also has vascular dementia). She was not happy about it either. Unfortunately caregivers are poorly paid, and you “get what you pay for” so to speak. In my town they are paid 11-12 dollars an hour. My dad’s place has the reputation of being a very nice, even pricey home, and they have lost many of their regular caregivers, there’s been tons of turnover since the pandemic started. I even suggested that we put in a camera. We didn’t end up doing so, but if they had resisted the idea I might have been even more suspicious regarding what was going on. My dad (age90)has also lost all mobility after getting COVID last January so has to be hoyered to and from bed, to chair, to wheelchair. Certain caregivers are less efficient about getting him out of bed in the am, and I often call ahead before visiting to let them know I’m coming and want him up. In fairness to the caregivers, there are often only 2 or 3 on the floor, and it’s a workout for them to help everyone AND do all of their other duties as well. You’ll probably never get the same kind of care your mom received when she was home. It’s just not available at most of these places. I guess that’s why home care is so much more costly. Even so, My dad has become part of a community there. He has connections with the administrators, the social coordinator, Some of the residents, and the caretakers. It’s something that I can’t provide for him as his family. I’m finding that it’s beneficial for me to not be there every day. You might need that as well, and might want to consider giving yourself a break by not going all the time. It gives them a chance to develop friendships and relationships with the people that work with them when you’re not there. Of course I’m thinking that this would only apply if you’re feeling comfortable with the place she’s at. It seems horrible to have to move her, but, when they know that there’s a possibility that it might happen, it’s amazing how they change their tune and their attitude! And if they don’t, then maybe you are on the right track to find a different place that’s better for her. Good luck!. Your mom is blessed to have you caring for her as you do!

It is our job as healthcare workers and yes, we did choose it because we want to be able to help people. However we are being so overburdened, short staffed, so one nurse is doing the job of three or four yet being paid for one. We are being picked on, spit on, peed on, and pushed around. Yes we chose it because we want to help people but the healthcare industry has made it impossible for us to actually feel like we are doing any good. Instead we're being micromanaged, nitpicked, and so overburdened that we can't keep up with even the med passes. So please next time you have to deal with any health care workers please thank them. Who will care for the aging population if not the healthcare workers?

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.

You have a difficult situation that most of us who have LOs in Nursing Home have had. I am guessing that your mother is depressed. Being depressed and having other medical problems make matters worse. She might be going through a period of adjustment with all the things that she has experienced recently. It is difficult to say because she does not talk. If she was combative with at home she probably is doing the same in the NH (when you are not there.) You are going to need more time to figure things out. If you jump the gun and move her to another facility it might be better or worse. Talk to the on-site doctor, What are their observations? Maybe geriatric psychiatrist should be considered for your mom. Keep in mind, you are on a difficult road ahead and this is only the beginning.

We also had issues when my mother-in-law was in Memory care, when my husband would question things, when his mom's needs were being neglected. We found another Memory care facility, and she did better there, at least for a while. Staff makes a huge difference, and with Covid, there's more of a turn-over I think. You're caught between a rock and a hard place. I agree with the other posters: you shouldn't feel guilty about asking questions. Best of luck.

Dont EVER stop questioning. Even If there is a small issue you notice. Bring it up. You are your mom's advocate! Having her in bed all the time is easier for them and not good for her. I can guarantee your mom on some level knows. If she doesn't talk...watch her eyes. Amazing what you will pick up on. My mom had vascular dementia...the doctor stressed different levels of simulation on a daily basis.
If they can't comply to the care you expect....you need to find somewhere else.
As a caregiver this is my #1 petpeve.

First of all, your Mom has raised one great daughter. Your devotion to her and her needs is truly wonderful.
My own mother’s ability to communicate is very limited. (96 years old with late stage Alzheimer’s), can’t’ walk and is in a wheelchair. What helped me and may be helpful to you is to ask for evaluations by OT and/or PT to assess your Mom’s abilities and come up with a plan. The social worker on her floor may be very helpful too. You can ask for a Care Plan meeting to make sure your mother is getting correct level of care and decide if her facility is able to meet those needs.

The physical road downhill starts with limiting mobility. By all means, they should be getting her out of bed and encouraging her to move. Does she get PT? Do they have a lift in case it gets to the point where she cannot transfer herself with assistance, because if they don't, you will have to move her to a different facility anyway. Look around.

Don’t back off. Keep at it. There’s no reason for her to stay in bed all the time unless she has MS and even then people still get up. They’re being lazy. I worked in facilities for six years. My mother died from nursing home neglect. Is there any other facilities or is home health an option? You can anonymously report them to the state department as well. One thing I learned the hard way was to NEVER tell them when you are coming. Pop up at all hours unannounced. Send in people they’ve never seen before to visit. Make nice with the people who aren’t having a hard time and see if you can get information. Unfortunately you have a long road ahead but don’t back down! Get a lawyer if you have money and keep on retainer. Whatever you do keep the facility in the dark about any plans you have! It keeps them honest! I will pray for you.