Memory Care in assisted living facilities - dealing with dementia and anxiety

[Sandi Bo]

I guess it's time I start my own thread. I feel like I keep hopping on others. There have been some good reports here and I am (or was) encouraged that there was some success out there - some good places. My mother is 90 years old with dementia and anxiety. She was pretty mobile til she started falling in June... She is currently in MA and I live in NE. I have 2 sisters back there that are here primary caregivers now (well... she's in a facility and that just isn't working out).

Our experience has been just awful. To the point my mother is now in a psych hospital - but we don't think they'll admit her to the psych area. She is admitted (maybe, official status is challenging) to a medical wing due to a UTI. And yup UTI's can wreak havoc, especially on the elderly. But my mother was already disruptive. We were told they may give her a 30 day warning in early June due to the disruptive behavior. But when they 'send her out' it's documented as she said she had chest pains (not threw something or broke something or called the workers or other residents names). It's just crazy how poorly anything and everything is communicated.

In early June my mother fell (because she was changing unassisted and got caught up in her pant legs). She was that mobile at that point. She broke her wrist. 3 days before the cast came off she fell and cracked her pelvis in 2 places, and at the rehab place fell and broke her nose (she can't remember she can't get up).

I am pretty sure I am going to bring her to my house because care in the assisted living and rehab facilities is ridiculous. Someone has to be with her or things get screwed up (or she falls). So why not have her in our home? (Well she does yell (alot when having anxiety attacks) - and you just can't calm her down til the anxiety subsides). Sometimes redirection, more often meds are needed. Very often they haven't been given as scheduled and so then you are waiting for them to take effect. I am going to learn to toilet her and transfer her from bed to commode when possible, that type stuff. She qualifies for hospice and I hear there should be good support from them. One driving factor to bring her to my home (in NE) is the hospice person I've been talking to here is amazing (please let her be as amazing as I think - please let her be half as amazing as I think).

I am beyond sad that the exit plan for our elderly seems to be eventually fall down and break something, until you break something fatal enough to kill you. Even after my mother's 3rd fall - when she forgot she couldn't get up and face planted - we had to fight for bed rails. Restraining is a big huge no no. No bedrails or seat belts in a wheel chair, etc. You can't use seat belts until the patient can undo it themselves. I asked about medication - when she is totally of the rails and nothing will help (and she's hitting people and knocking things over) and they said - that would be chemical restraining (and they have to super document that type of need). Sometimes they give her Haldol - seems effective -- but places don't like to give it because if the hospital gives it - it's a red flag for behavioral issues and then facilities tend not to accept the patient. And they can't release them until there is a facility to take them.

A lot of places/people don't know how to support dementia. Once reason I love my NE hospice person so much - she does. The past 2 years have been a nightmare.

Suggestions... support.. commiserating...

 

[Patri]

I am so sorry you are all going through this. It does sound like a nightmare. However, I wish you could find a different facility that can handle difficult memory care residents. I fear that after a short time you will be as needy as your mom. Hospice can’t be there all the time. You are going to be on guard, on edge, constantly and it could break you.

 

[rapmarks]

My husband was a soft spoken, well mannered gentleman, until the last falls. Your post is bringing back nightmares. First of all, they can’t be watched 24/7. My husband got up in the night and did things, both at home and assisted living, rummaging is a big sign of dementia, took things apart, flooded the bathroom. They found him on the floor every morning. So they Went to his room extra early to get him up and in a wheelchair

if you are thinking hospice at home, they don’t come in that often. You will need a lot of help.
the doctor that serviced the assisted living felt that drugs were the answer. She overdrugged my husband and they didn’t work.
my husband was given thirty day notice, and he was going to need to be moved to full nursing home. I have a video of three staff members trying to get my husband out of bed with him screaming and fighting them. A man who never got angry was hitting and punching staff. Once they got him up and in his wheelchair, it was like a switch. He would become the friendly, charming guy he usually Was.

 

[easyrider]

It's a tough thing to deal with. There are support groups both online and in person. We joined a group similar to the Alzheimer online support group to get ideas about what to do regarding a relative with dementia.

Good Luck

Bill

Home - ALZConnected

ALZConnected is a dedicated community where people with Alzheimer’s, their caregivers, and others affected by the disease can share answers, opinions, ideas, and support.

alzconnected.org

 

[VacationForever]

We ran a home care company for 8 years before we retired. I am sorry that your family is dealing with this with your mother. You will need professional caregiver support as you won't be able to handle your mother on your own. Hospice nurses will come in several times a week, and will also be able to send home health aides to help with bathing your mother about 3 times a week. But the rest of the time, you will need additional help. Unfortunately, she is in a situation where she needs the skilled nursing type care because of her physical condition but because she has dementia, SNF environment is not equipped to handle her unless they heavily sedate her. With dementia care unit in assisted living facilities, they are not able to handle physical conditions/injuries. If you are willing to fork out alot of money, you can hire an agency to provide around the clock care for her, whether it is at home or at in the SNF. It is short-term expenses, presumably she won't last another 6 months since it is a qualifier for hospice diagnosis.

 

[Cornell]

I'm reading this and it makes me sad and upset. Went through all of this w/my own mom.

You are learning one thing - rule out a UTI for any behavior/medical change.

My own mom was in a "top rated" facility. The kind of place that offers fully independent to memory care to skilled nursing care. The independent living looks all shiny and nice. In retrospect, this is where the sales people make the hook. My mom focused on that when she bought in b/c that's where she was at that time of her life. Her last stop in skilled nursing was NOT good and I actually feel like I have some PTSD from it.

Everyone speaks lovingly of hospice and how people are just "angels". Maybe....But in our case, our family was less than impressed by our hospice experience.

I wish you well on your journey. It's all so incredibly difficult. Do not underestimate what will be involved in having your mom living w/you.

 

[Cornell]

My husband was a soft spoken, well mannered gentleman, until the last falls. Your post is bringing back nightmares. First of all, they can’t be watched 24/7. My husband got up in the night and did things, both at home and assisted living, rummaging is a big sign of dementia, took things apart, flooded the bathroom. They found him on the floor every morning. So they Went to his room extra early to get him up and in a wheelchair

if you are thinking hospice at home, they don’t come in that often. You will need a lot of help.
the doctor that serviced the assisted living felt that drugs were the answer. She overdrugged my husband and they didn’t work.
my husband was given thirty day notice, and he was going to need to be moved to full nursing home. I have a video of three staff members trying to get my husband out of bed with him screaming and fighting them. A man who never got angry was hitting and punching staff. Once they got him up and in his wheelchair, it was like a switch. He would become the friendly, charming guy he usually Was.

These memories must be so hard for you. I'm sorry.

 

[b2bailey]

This is so sad and difficult to handle. End of life issues can be the most complex and challenging chapter of life. I'm sorry for you having to face it now.

I sense your loving concern for your mom's welfare. I agree with what others have shared about the challenges you will face if you relocate her. Unless you or she have a very large supply of cash, the cost of 24 hour care at home will be prohibitive.

You don't mention what your sisters feel is the best solution.

 

[rapmarks]

I'm reading this and it makes me sad and upset. Went through all of this w/my own mom.

You are learning one thing - rule out a UTI for any behavior/medical change.

My own mom was in a "top rated" facility. The kind of place that offers fully independent to memory care to skilled nursing care. The independent living looks all shiny and nice. In retrospect, this is where the sales people make the hook. My mom focused on that when she bought in b/c that's where she was at that time of her life. Her last stop in skilled nursing was NOT good and I actually feel like I have some PTSD from it.

Everyone speaks lovingly of hospice and how people are just "angels". Maybe....But in our case, our family was less than impressed by our hospice experience.

I wish you well on your journey. It's all so incredibly difficult. Do not underestimate what will be involved in having your mom living w/you.

PTSD is a good way to put it, I may have it. I too was not impressed with hospice. On Friday they rejected my husband as a candidate, on the following Tuesday they said he was a candidate, two days later they moved him to their facility and he died within a week, never waking up.

 

[SteveinHNL]

I know a fair amount about this, I wish it wasn't due to personal experience. Being a caregiver to a loved one with dementia is very taxing. You will need a lot of help as has been mentioned.

If your mom is eligible for Medicaid she should qualify for an in-home support service budget funded by Medicaid but administered through the State and Counties. In Nebraska, here is the place to start: https://dhhs.ne.gov/Pages/Social-Services-Aged-and-Disabled-Adults.aspx

Basically this means that a social worker will assess your mom's need for assistance in areas such as housecleaning, meal prep, meal cleanup, laundry, shopping for food and other necessaries, errands, bowel and bladder care, feeding, dressing, ambulation, transfers, bathing and grooming, medication assistance, accompaniment to medical appointments. In the State of CA they also allow for protective supervision for persons who could put themselves at risk of harm due to their mental disability (which allows for a lot more hours in the budget), but I can't tell if that service is part of the program administered in Nebraska.

One the amount of need and budget of hours is determined, basically that means that the program will pay for a caregiver that you our your mom hire to take care of her, at minimum wage. If she is assessed to need 80 hours a month, she would be able to use State moneys to pay someone to help her for about 20 hours a week, at minimum age.

Oftentimes, the paid caregiver is you, the family member who is caring for your mom. Or if the load is heavy, you might do what you can (for free) and use the allotted hours to pay an outside person to come in so you can try to live as normal of a life as possible.

 

[Rolltydr]

I’m so sorry you’re having to go through this, Sandi. We went through a similar experience with my mother in 2011. As Steve mentioned above, Medicaid is a good place to start if it is an option for you. You don’t mention any long term care health insurance, so I assume that isn’t an option. Medicaid was able to get our mother into a good facility where she was well taken care of. I’ve posted about it before so I’ll keep this short. She was in a good facility and my brother or I visited almost every day. I think that also had a lot to do with the level of care she received. The nurses knew us, knew what we expected of them, and knew we would be there every day. We never had a problem.

As several others said, if you keep her at home, you will need a lot of help and it will take a toll on you and your family. These are hard decisions and you just have to make the best decision you can based on the information and options available to you.

 

[Sandi Bo]

Thanks everyone for your comments, suggestions, etc. So very sorry to those who have travelled this path already (and the PTSD, ugg).

@SteveinHNL thanks for the info, I will research more. Without offending my sisters I keep saying - I'll take her if you're ready to let her come to NE. I don't want to spend too much time researching if they aren't going to send her to me. And then they say - yes - send her to NE. And than I do some research, and they want to keep her. I had found a couple places I liked for memory care (because the one there was so bad) but they could never quite let her go, and the place kept saying they'd do better (we never let up and we monitored like crazy). And now that she's fallen those places aren't options (probably ever at this point). I have found some SNF and a good hospice organization. I'll dig in more with what you sent. Also hard (damn where is that crystal ball) is the Medicare/Medicaid issue. We were looking at how to get to medicaid asap by drawing down her money (she has about $200K left), but now thinking her money will last her using Medicare - esp if on hospice. I really am at a point I say we don't care. Oh except I think she has to live in NE 6 mos to qualify for Medicaid there. So, we really need to get her to the state she'll be in in 6 months, I think (NE or CT -- no likely MA where she is now).

First, an update, I literally could do this by the hour and not be up-to-date. I have 2 sisters (also 2 brothers who defer to us). I am the oldest girl. The middle one lives closest (5 min) from Mom -- her and my Mom were besties, literally, forever. Did everything together. Going into her home is not an option - as much as she has done for my Mom, it wouldn't work (not for her or her husband). Then there is my little sister. I think she is going to take my Mom home to her house in CT (instead of Mom coming to NE). I appreciate and hope I understand the implications of that (for either of us). My little sister was a hospice nurse until fairly recently when her hospital sold off that service. She was too close to retirement to leave her current employer so switched specialties. She was (and still is) an amazing hospice nurse. She is 2 hours away from Mom and still working and her husband works from home. He has told her he likely won't be around so much (not in a mean or bad way, just that he will be working and has options to not be in the home). The 3 of us are just so tired of this hamster wheel. We lived by the motto - she may not be happy (she hasn't been for a long time) but we'll keep her safe. And we didn't. I also say to all - no guilt, no judgement (I've said horrible things to my mother trying to get her to stay in bed or stop yelling). My sister is constantly praising my patience with my mother. I'm not really, it's just that Mom knows I can't come so doesn't ask me to and instead listens (usually) to me. Although I live 1500 miles from my mother, I have supported her remotely. I was the overnight call. If they couldn't get her to stay in bed they called me. We have Alexa and ring cameras in her ALF memory care unit room (they love us (not really)). She trusts me, knows I can't come, and listens to me. It's crazy and many people didn't believe possible - but I can remotely calm my mother better than most anyone present in the room. If it's the middle sister they call - Mom wants her to come over. She has the presence of mind to know I can't come. It worked. The SNF she was just in (before the most recent trip to the ER psych hospital) wouldn't let her have Alexa. Withdrawal for me, btw. But ok. But missed opportunities for being able to calm her down versus sending to ER again. We did really good for a long time -- but now are in a terrible cycle of round trips to ER's (each taking a terrible toll on my mother's fragile mind).

@Cornell I'm sorry the continuous care failed you (and that scares me). My step-mother (for whom I am HCP, etc) is in a CCF. She is still in independent living (although close to needing to move to assisted - so far we've only need them for some rehab stuff and that worked well for her (and me)). I did experience the hospice end of that organization as they cared for my father (as a non-resident) - again, it was excellent care. So hopefully my step-mother's needs are met (time will tell). Funny/non funny I'd consider them for my mother but my step-mother would never forgive me if my mother were in the same place (to put that lightly). Geez, who knew gliobastoma (my Dad) would be easier than dementia?

@Rolltydr Thanks for your comments. Yeah, trying to figure out if we should be drawing her down. Not that that matters all that much - I think our only viable option to save anything (and we really don't care about the money) is a $15K funeral policy for her. Someone said she could buy one for each of us kids and our spouses (that would be 9 more $15K policies). Not for sure the funeral policies for kids is viable. I joke, Mom has said, I won't leave you much, maybe you'll have enough for a car. Instead it might be funerals for all. (None of us want or expect or need anything and are willing to split whatever is needed to properly care for her (that's when it's nice to have 4 siblings - but yikes we don't want to throw money away and are trying to be prudent). (And yeah, no long term insurance).

@VacationForever - Thanks for your comments. Exactly - there isn't a place for her. So she was at a SNF that didn't handle dementia. And they put her by the coffee carafe cart they were prepping for dinner. And she knocked over 5 carafe's of coffee. And they send her to ER for behavior issues. Or could they could have waited for that switch @rapmarks mentioned. To hear you say that @rapmarks - I've lost track of how many times I've said if we could only figure out that switch.

@rapmarks - my daughter is a hospitalist and often cares for dementia patients (it's where they end up when no one can handle them). And I'll always remember her telling me of one particular patients daughter pulling her to the side and saying - this isn't my mother - my real mother would be appalled at herself/behavior - and wished my daughter could know her real mom and went on to describe her. I have always held on to that and to some caregivers said something similar. I love dearly the caregivers who seem to be able to understand that (forget the outbursts and enjoy her when she is joking and herself). Some can't and I am angry at them - they shouldn't be caring for dementia patients. On the ring camera, I have heard my mother say to a caregiver - "thank you for being nice, some people are mean and don't like me". They know! (I do have to bite my tongue sometimes when Mom says they are mean (like, Mom, you were calling her a B... and telling her she was worthless and didn't do anything 15 min ago)).

And I am angry. I have plans in my head for later, lol. To those who failed her, to the person I saw hold my mothers hands in hers and say they love her and will take care of her, we're family. Who later assured me they would make things right (when pointing out all the things they said they'd do (for dementia care) but wouldn't. Later...

And why is it okay that this seems to be the circle of life? The falls are part of the exit plan. A facility in NE that I liked has infrared sensors (called Foresite) in the room and cameras. They monitor the patients that way. So no call buttons - but they know when they are up. This is a memory care assisted living facility. They monitor temperature using this system. They catch infections early. They can notice if someone is up more often than usual (and check for UTI). OK... I get it's the sales plan. But it sounds so good. And I only found it in this one place. Before her falls - my mother had scheduled meds at 4am (at my insistence - you had to stay ahead of things - HAD to or else). If she was feeling okay, she'd get up, use the bathroom, and go back to bed. And we had motion detectors on the ring camera - I would call and say - she's up - give her her meds. If she didn't get up, I tried to insist they wake her - they hated that, but if they let her sleep the end result was her psych meds wore off and she could be pretty bad. Anyways, I really liked the Forsite concept - I wonder if it's as good as they make it sound.

At the moment, I think my sister is going to take her to her home. But I do think I have a backup plan to take her to NE if I need to. And that if it doesn't work in my home, some facilities identified to transfer her to (with continued support from the same hospice organization - as long as this NE hospice organization is as good as I think). If the end is near, and my sister thinks it is, my sister wants to care for her (if you'd been a hospice nurse most of your life, I think you'd want to - I think that is where she is coming from). Comically, yet truthfully, she has said - she wants to take her home and pamper and spoil and let Mom be around family (last night sister bathed, washed hair, even put in the curly gel stuff, whatever, said the hospital staff appreciated it, too) - but said if Mom comes back and starts running around we'll have to talk more.

I appreciate all your support. My journal - I guess I should find a dementia support group - love that we can post here. And again, so very sorry for those that have gone before.

 

[rapmarks]

A sister who is a hospice nurse, that sounds like the best place to be. Her condition doesn’t sound that advanced if you can reason with her, if she knows you live too far to come, she uses the bathroom.
every move and trip to the er destabilizes her. At the least sign of combativeness, they will use drugs in the er, like fentanyl.

my husband was in a wheelchair and didn’t know it. He said he was not in a wheelchair. I took his picture and showed it to him and he said it was an old picture, he was not in a wheelchair. .
it sounds like her place is trying. When my husband fell, it took three weeks to find a rehab place. It was so awful. He caught COVID there and in the few days I was not allowed in, every stitch of his clothing disappeared. He was naked and the head nurse said, well he’s not going anywhere, what does he need clothes for. I am pretty sure something really bad happened to him there, afterwards he would go crazy if anyone tried to touch him, to change him or clean him up.

 

[Sandi Bo]

I'm so sorry for what you had to go through, @rapmarks We had Alexa and ring cameras and they knew we were watching. Some people turned the cameras around. Some places don't allow them (like the last rehab place). They told my sister she could bring Alexa and when they saw it and had a team meeting told her they didn't realize it had a camera and we couldn't have it. Those visuals were so helpful/comforting for my Mom. That "he isn't going anywhere" attitude is the one that kills me. The staff that act like because they have dementia they don't have feels or modesty have no business caring for people with dementia (or caring for anyone for that matter). When my mother fell the 1st time she was changing and her pants were around her ankles. The 1st thing she said when the staff came was she wanted to be covered up.

Mom's clarity comes and goes. As you can imagine. Repeatedly she needs to be told she has a broken pelvis. First she says it hurts, then you tell her why, then you tell her she fell. Rinse and repeat. She will ask why no one is there. I will tell her my sister came, she says she doesn't remember, I say 'she sent me a picture of you doing a puzzle together', rinse and repeat.

My sister is pleased with the care my mother is getting now (in the medical wing of a psych hospital). And so we figure, today, no rush to move on. She is supposed to get PT here and if she goes on hospice it may stop (depending on the hospice organization). It would be nice if she gets just a little better to help with the transfers (to commode). I'm not sure how realistic that is - I say that knowing overall she is getting weaker. We are still wondering which way she'll go.

 

[LMD]

So sorry you are going through this. I am a physical therapist and work in home health. This includes going into peoples homes, caregiver home, facilities including memory care units. If you bring her home you will definitely needs support. A consistent private duty caregiver that your mother responds well will probably be important - sometimes those are hard to find. I would also have a PT come into your home to assess safety , set up, recommend DME and also teach you how to help her with transfers. It takes a lot of patience and a good understanding of the disease process to care for a loved one with dementia. It is great that you are willing to take this on. Just make sure you also make time for self care. I see primary caregiver burnout all the time.

 

[Sandi Bo]

Sadly, repeatedly we have said -- Mom must be extreme, others can't be this bad. And yet.. here are your journey's

 

[pittle]

Sadly, repeatedly we have said -- Mom must be extreme, others can't be this bad. And yet.. here are your journey's

Oh, I have some horrid stories and memories with my mom and dementia. She also had to go to one of the psych hospitals and they put her on some "zombie" meds.

We finally moved her out of the really nice Assisted Living facility that she had progressed to the Memory Care wing into a group home. The group home was a lovely renovated huge home that had a maximum of 9 residents and 3 care givers at all times. They took remarkable care of my mother for her last 18 months.

 

[Brett]

We also had a similar experience with my mother, Family members initially providing support, then in-home visits by an agency and finally transitioning to an assisted living facility.
It's not an easy process. Health care agencies and nursing homes have high turnover so it's helpful to have family members check in and make sure she is getting the best care.

 

[Rolltydr]

Sadly, repeatedly we have said -- Mom must be extreme, others can't be this bad. And yet.. here are your journey's

Yes, others are just as bad. My mother certainly had moments when she was out of control. Some of them happened prior to her being placed in the nursing home. That’s how I knew there was no way we could handle her at home. I try not to think about those times because I know it wasn’t really her and she couldn’t help what was happening to her.

 

[rapmarks]

I'm so sorry for what you had to go through, @rapmarks We had Alexa and ring cameras and they knew we were watching. Some people turned the cameras around. Some places don't allow them (like the last rehab place). They told my sister she could bring Alexa and when they saw it and had a team meeting told her they didn't realize it had a camera and we couldn't have it. Those visuals were so helpful/comforting for my Mom. That "he isn't going anywhere" attitude is the one that kills me. The staff that act like because they have dementia they don't have feels or modesty have no business caring for people with dementia (or caring for anyone for that matter). When my mother fell the 1st time she was changing and her pants were around her ankles. The 1st thing she said when the staff came was she wanted to be covered up.

Mom's clarity comes and goes. As you can imagine. Repeatedly she needs to be told she has a broken pelvis. First she says it hurts, then you tell her why, then you tell her she fell. Rinse and repeat. She will ask why no one is there. I will tell her my sister came, she says she doesn't remember, I say 'she sent me a picture of you doing a puzzle together', rinse and repeat.

My sister is pleased with the care my mother is getting now (in the medical wing of a psych hospital). And so we figure, today, no rush to move on. She is supposed to get PT here and if she goes on hospice it may stop (depending on the hospice organization). It would be nice if she gets just a little better to help with the transfers (to commode). I'm not sure how realistic that is - I say that knowing overall she is getting weaker. We are still wondering which way she'll go.

At assisted living memory care, I felt the care was good. I went every day for several hours. I saw the staff treat everyone with respect. They were well trained. My husband just got worse and worse. But they never told me he wasn’t eating. I always left at meal time so he could sit with the guys. My daughter just complained again today that he never should have been in a home. With a broken hip, leg and wrist, I could no longer take care of him. It was supposed to be temporary. But I was worn out. The pt staff was terrific. They even came in to see him when he was moved to hospice.

 

[Kat05]

Like many others I've been there too. I brought my mom to live with me after she had a fall fractured her hip and suffered a head injury. She went from living independently, driving, traveling etc to not knowing who I was. Over the two years she lived with me she developed severe sundowner anxiety and would have episodes of insisting she was leaving and would try to leave the house. I am a Registered Nurse with extensive long term care and homecare experience and believe me nothing prepares you. It was a full 24/7 responsibility.
I had tremendous support from my husband, my 5 siblings and my children and grandchildren. Unfortunately two years in my mom started losing weight and was diagnosed with cancer. She only lasted 3 months after being diagnosed. We did have Hospice care at home and it was a major disappointment. I was hoping for assistance with her physical care as she became weaker but they had no staff. She couldn't be admitted inpatient because we had signed over her hospital benefits to Hospice. The only positive was the spiritual counselor (a former priest) who visited weekly. I never slept through a night the entire time she was with me. As weak as she became she'd still try to get out of bed alone. After she passed I honestly think it took me a year to recover. Would I do it again? Yes in a heartbeat, because I know that was still the best option.
Advice I can offer:
I brought familiar things from her home for her to have at my house. She loved looking at picture albums.
For nights I had an intercom in her room and carried the remote with me and kept at my bedside at night
I had motion detector alarms that I could position by her bed so the second her foot was down I was there
I had a camera in her room so I could check on her when she was sleeping
I had a gate in the upstairs hall because I was petrified she'd get to the stairway and fall
Be prepared for her to get up alone, have grab bars, a walker etc and light on in bathroom
If you have a porch or sun room Adirondack chairs are great because they are a bit more difficult to get out of for someone at risk for a fall.
Schedule and routine - as much as possible

My mom had been very social and was close to my daughters and she loved children. Although she rarely called anyone the correct name she enjoyed their visits and it was very calming. One of my grandsons would get off the bus here several times a week and they would do puzzles and watch movies together. I was lucky enough to have them close by and able to run over as needed. Something about seeing them calmed her and would snap her out of a bad episode.

She was physically well and mobile enough that we went out to the movies every week. She enjoyed going out and face it so did I, so we went for a drive every day. I'd go through McDonald's drive through and get her an ice cream or a shake and I'd get a coffee or tea and then we'd drive for about an hour. She sometimes had very lucid moments when we were driving she'd remember who I was and who she was. I can't explain it.

If your sister takes this on she'll need all the help and support she can get. It's the simple things you can no longer do, like trying to take a shower, make a meal, answering the door. It's almost like having a toddler they can't be left alone for a minute. If you have the money I'd find someone that can come in a few hours each week to spell your sister in addition to family.
Many nursing homes have respite beds that can be used for short term stays of less than 2 weeks when a caregiver needs surgery or plans to travel for a wedding or just needs a break. I'd research in case it's ever needed.

Finally, you need a physician or nurse practitioner to look at her medications (maybe your sister has already) some meds intended to treat anxiety can actually have an opposite effect on elderly and dementia patients. You'd like to believe those practicing in long term care would know that but they don't. UTIs as previously noted can also cause increased confusion as well as being potentially lethal.

There are many on here that have gone through this or currently are so reach out for support and encouragement as needed.

 

[Sandi Bo]

So I'm doing it - the plans are for my Mom to come to my house - the flights are booked for Saturday. So as long as all goes well, my sisters are bring her to Nebraska this coming weekend.

Scary - yes. I appreciate your comments and suggestions, links... your lists

The decision to come here is because she is doing so well. How crazy is that? When I first posted, we thought she was on her deathbed, and it made the most sense for my (hospice nurse) sister to take her to her house. However, my mom seems to be making quite the comeback. My sister still works, and her husband works from home (supportive but...would find somewhere else to work). Mom's been in the hospital since Aug 3rd. They adjusted her psych meds. She is more calm today than she's been in several years. Yes, still some anxiety, but nothing like it was. Depakote may get the credit for that. They treat her well all the way around. PT, meals, respect and comfort. Her room is right outside the nurses station - I suspect the immediate response to her calls for help are adding to her success.

This week I will be visiting facilities in the area so I have a backup.

The hospice agency (here in NE) we are using has been beyond amazing. Super supportive and I'm so grateful for that. I have a home care agency that will come in, working on those hours now. And I have to see how my mom does here to really gage how much help I'll need. She tells people she is coming to help me care for my grandson. I've always felt purpose has been missing these past few years. I argued she can fold and put away her own clothes, make her own bed, etc. But that just hasn't happened. Not sure where all that will land with the falls she's had, but I plan to have her do as much for herself as she can.

The hospice agency will do a med reconciliation when they admit Mom (she gets here Saturday, the nurse is coming Sunday morning).

There's a lot to do but I am hopeful. Today I have a home safety check and a handyman (amazing brother-in-law) ready to help with whatever needs to be done. My house is pretty safe already, I think, due to grandkids and dogs (gates over stairs).

For however long this peace of mind lasts, it's been nice. After 2 years of calls 24x7 and watching my mother be poorly cared for, it feels right. I'm not sure I could live with myself given the ridiculous trajectory of fall after fall after fall. I also totally understand so many people are or have been in the same situation and don't mean to offend or cause guilt or anything to others. I know I am lucky my husband is so supportive and willing to take in my mom and that I am in a position to be able to stay home and do it. And it may be short-lived. We'll see. Gotta try.

And yes, still so very angry. Such ridiculous care. My mom's first break was her wrist. 3 days before she got the cast off she cracked her pelvis. Still got the cast off. 2 weeks later my sister took a week off of work to care of her (in the hospital). Although the cast was off her wrist, my mother still held her hand close and curled and not using it. No OT or PT or anything (as now the focus was on the pelvis, etc). My sister started doing things with her and reminding her that yes she can use it. With the dementia she forgets. Happy to report she is now using her right hand again.

She's walking, too. I saw her last weekend. Encouraging her and cheering as she was getting up and taking steps, I said 'Mom, you're doing it, you're going to walk again', she said 'I never knew I wasn't'. We'll see how all this goes. Thanks for your support.

 

[Patri]

Hospice is required to identify who they are. Will your mom understand or mind? Granted, it can be presented as more people looking out for her and helping her.

 

[SusanRN]

I believe you are correct that she would benefit from having purpose in her life, even if it is made-up. You can give her towels and wash clothes to fold. When she's finished, you can surreptitiously muss them and give them to her again. Might occupy her for quite a while....

 

[mentalbreak]

I believe you are correct that she would benefit from having purpose in her life, even if it is made-up. You can give her towels and wash clothes to fold. When she's finished, you can surreptitiously muss them and give them to her again. Might occupy her for quite a while....

I so agree with the power of purpose. We found an organization that needed help washing and folding donated baby clothes in her own home. It brought her so much joy to be helping others.