reconsidering SNF placement

odowd

I had a difficult day yesterday with mom calling seven times in four hours. And following a visit to her last week (I live about 500 miles away), I’m reconsidering her placement in SNF.

We placed mom in SNF about eight months ago. We moved her to a better facility Feb. 1 when a room became available there. She’s been moved within the facility a few times, so she’s now on her third room there (have had trouble getting her placed with a suitable roommate). She moved into her current room just over two weeks ago. Yes, it’s a lot of moving around and my brother and I struggled with each of those decisions because we knew we were kind of resetting the clock each time on getting her accustomed to her surroundings. But on balance we felt it was better to have her with a roommate that wasn’t driving her crazy.

I mention this because I find a lot of affirmation on this board every single day. And yet… I’m so envious reading about loved ones taking only a couple days, or a couple weeks, or even a month to settle into a long-term facility. My mom hasn’t been home since mid-October 2021 and still she asks every single day when she can go home, how long she has to be there, how is she paying for this, etc.

Following my visit last week, I began rethinking whether or not I should move back home to have her live with me and get in-home care. Because when I visit her, I can spend hours with her and she’s fine. Yes, still can’t remember much, but she’s not scared or confused about where she is. That only happens when my brother or I leave and she’s alone. And it stings even more when she occasionally says to me, “the one thing I never wanted was to be alone.”

If anyone has experience with Michigan Medicaid waiver program (MI Choice) or the PACE program, I would love to hear some firsthand experiences.

My dilemma: I work full time. I would have to move back from NJ to MI. I would need to buy a car to live there. My employer is willing to be flexible as far as WFH but I don’t know for how long. (A year? Less? We’re all supposed to be back in the office at least two days a week starting July 11 but they’ve told me they will work with me.) If they won’t let me work remotely long-term, what do I do after that time is up? Find a new job? (Not easy in my field). Move back to NJ and move mom back into SNF at that time?

The CELA has advised against transitioning to Medicaid waiver (his words: “it’s been broken for 20 years.”) The social worker at the SNF has advised against it as well, saying the team there agree mom needs 24/7 care.

For background, mom is, by my best assessment, probably 6a. She also has bad knees and is mostly wheelchair bound, though she does transfer herself in/out of bed and to the bathroom, albeit with considerable difficulty. She also appears to be urinary incontinent. (That last one is what tipped the social worker; she said if she weren’t incontinent, home care might be more feasible.)

terei

I would have some conversations with staff that have regular contact with your mother.  Is she continually complaining about leaving to them?  Is she engaged with any other patients?   Does she seem to enjoy activities?

So many times, these complaints are ONLY to the people they think they can sway with their dramatic guilt tripping.  You moved your mom again 2 wks ago. I suggest giving it a full six months before you make any drastic changes.  I would not answer multiple calls during the day.  These conversations just seem to ramp up agitation. If you have her phone set on a one key dialing program, have that eliminated.   Every time she calls you, she probably thinks it is the first time she has done so.  I would stop the calls.  If there is an emergency, the staff will call you, trust me.

Please dont upend your life.   Your mom is in a safe place + there is no guaranty that she would be any more satisfied being in your home + you would have a lot more stress + pressure yourself.   I have a feeling she is doing just fine but you are getting information from her that might not be entirely what is really going on.

dayn2nite2

I can verify that in Michigan, the Medicaid waiver program IS broken.  You won't get help there.  Or maybe you'll get some help in a year, and then when you do start getting help, you will deal with daily issues of the worker not showing up, new people starting all the time and you retraining them.  Just no.

Don't do what you're considering.  You will be sacrificing your job (they SAY they'll work with you but wait till your coworkers find out you don't have to come in to the office).  

Every move (even within facility) has set her back to Day #1.  So whatever date she moved into her most recent room, that is when the clock started again.

She WILL adjust eventually.  Stop moving her around.  What is the issue with the roommates?

If your goal is "happy" well that's just not going to happen.  She will never be happy about this.  Tell her Medicare is paying for it, it's doesn't matter.

You tell her that the doctor has said that she has to be there and you don't know but you'll check when she doesn't have to be there anymore.

Olly_Bake

So true. Had a lady all trained and going along decent. Dad ended up in the hospital and since he came back, she has fallen off the face of the earth. Not answering texts or calls from me or the office. Another one started this week and already she could not come the next day and has to think about it for another day this week. This has caused me to be going non-stop for over a week and it is not looking good coming into the next week as far as having someone other than myself.

Stuck in the middle

I don't think working full time, even from home, while caring for someone works very well.  At Level 6a, your LO only has to progress a little before she is interrupting Zoom calls and generally keeping you from getting your work done.  

I think, if you take her out of the SNF, she'll be back in a year or less, and you will have rearranged your life for nothing.  I'm not an expert, I'm just a guy whose heartstrings aren't being tugged like yours are.

Good luck, whatever you decide.

ButterflyWings

Is SNF the right placement for her? Maybe MC is more appropriate for dementia and can engage or redirect her better. I think the SW is right about the bathroom supervision needs and incontinence demands that are inevitable anyway—since this is progressive.  

Agreeing here that you should not upend your life and career for this one-way disease that will leave you without your LO plus empty handed in your personal life if you are not careful. I would not. Pre-dementia mom likely would never want you to.

sandwichone123

She also has bad knees and is mostly wheelchair bound, though she does transfer herself in/out of bed and to the bathroom, albeit with considerable difficulty. She also appears to be urinary incontinent.

A patient who is not independently mobile needs to be moved every two hours, 24/7/365 to prevent skin breakdown and monitored consistently for falls. The care of a person in this condition really requires shift workers, and most families, even large families, can't do it for long unless they're willing to assign shifts. A week involves 21 shifts of 8 hours each. This is very repetitive, unrewarding work, for the most part. It can be much more rewarding for facility staff, as they have the social support of coworkers and can go home to their own families.

If you are concerned and want another change, it would make more sense to put her in a facility near you than to move yourself toward her.

odowd

Thanks all for the feedback.

terei, you're right that these complaints only come to my brother and me. And in truth, she's even said to us many times (only ever midday) that she likes it there. But it's when she's alone, after dinner, that she gets very depressed and scared.

dayn2nite2, thanks for the insight on Michigan. It's easy to say "stop moving her around" though. I have to consider her comfort and peace of mind. The first roommate drove my mom crazy because she would scream in pain throughout the day. The last roommate was mean, would say hurtful things to my mom (and trust me, I'm not just taking mom's word for it) and stole things from her (little things like coloring books). Sorry, I couldn't leave her with that roommate. 

ButterflyWings, you're right that pre-dementia mom wouldn't want me to. Sadly, Medicaid in Michigan doesn't cover MC.

mommyandme (m&m)

My thought is if you’re going to make another move, make it be getting her closer to you and/or your brother.  Possibly move her to a facility in your area then you can visit more. 

Would hiring a caregiver/companion to visit her where she is now be an option?  A couple of hours a few days a week?  Besides companionship for your mom, they could be another set of eyes on the ground.  

I’m sorry for these struggles for all of us. 

dayn2nite2

odowd wrote:

Thanks all for the feedback.

terei, you're right that these complaints only come to my brother and me. And in truth, she's even said to us many times (only ever midday) that she likes it there. But it's when she's alone, after dinner, that she gets very depressed and scared.

dayn2nite2, thanks for the insight on Michigan. It's easy to say "stop moving her around" though. I have to consider her comfort and peace of mind. The first roommate drove my mom crazy because she would scream in pain throughout the day. The last roommate was mean, would say hurtful things to my mom (and trust me, I'm not just taking mom's word for it) and stole things from her (little things like coloring books). Sorry, I couldn't leave her with that roommate. 

ButterflyWings, you're right that pre-dementia mom wouldn't want me to. Sadly, Medicaid in Michigan doesn't cover MC.

"Peace of mind" is not going to happen.  You may get "no complaints" which is the best you can hope for.  BW is correct, Michigan Medicaid does not cover any MC and the waiver program is as I described, with you constantly dealing with no-show aides, chasing after supplies, phoning about billing problems and errors - it's a full-time job all by itself.

My mother was on Medicaid in a wonderful SNF in West Bloomfield but sadly it was sold to a chain a few years ago and doesn't seem to resemble the old place in terms of care.  It is now more geared to concierge/private care and I don't even know if they take Medicaid anymore.  

JJ401

Roommate stealing — things disappearing in SNF or MC are common. That is why most facilities tell you not to bring items of value and to mark everything with a name. Sometimes the item is actually taken, but most often another patient is in the hunter / gatherer stage  and is just moving things around. Sometimes the resident themselves has carried it around and left it somewhere in the facility and another resident has picked it up.  In a SNF or MC possession does not always mean stealing.

glitterqueenscare

Hi - I live in Michigan and was cautioned about the waiver program here when my Mom's care made it necessary to get round the clock aid.  We were told to expect the issues others have mentioned such as workers no showing or constantly having to retrain new workers.  We also had to wade through a long approval process that wasn't exactly certain and it sounded like we would of still ended up with out of pocket that would have been pretty steep because it wasn't certain how many hours of care we would have received once approved. We opted for full medicaid approval. Once she was approved we placed her into SNF.  It has been the hardest thing I have ever done. It is something I have grieved for a year.

She isn't happy, far from it. She does have good days and many staff members dote on her but she is confused and not able to reason or communicate well. She is sad, cries often and hard to redirect. Although staff try to cheer her up or direct her she ends up pacing most of the day alone or with staff. I try to stop in to see her a couple of hours 3-4 times a week and bring her treats or take her outside in the courtyard. She no longer begs me to take her out of there but only because she isn't able to form the words as easy as she is becoming less and less able to verbalize her thoughts. 

I work from home full time and have for years, way before the pandemic.  I originally thought I could care for my Mom and have caregivers during the day and take care of her at night. Once I did it I realized how out of my depth I was. I lasted a year once we moved in together full time. Its just not realistic.  I was cutting myself too short and my health was sliding, I had no time to restore myself. I did have a decent caregiver most days while I worked but no help on weekends or evenings and worked all day. I had very little relief. The game changer for me was when I couldn't really leave her safely in a room anymore to so much as go to the bathroom. She was becoming a full feed, I had to dress her, bathe her and take care of all the bathroom functions daily. Even with caretaker help it was just too much. Are you ready to fend for yourself on most weekends, holidays, etc. My employer was wonderful when her caregiver called in but it was one year, I am not sure how he would of felt if it had been longer. 

I have had to work on making my peace with the decision. There simply aren't a lot of resources out there and if you work full time, even from home, my experience was that caretaking is the number one need in the house and everything else will slide. Your job, health, social life, appearance, diet, fitness, mental health, everything will be second to it. My Mom would not have wanted that for me, I am sure yours wouldn't either. Its hard to think of them suffering, its a horrible disease with such protracted pain and grief over years and years. I just wanted to say you aren't alone, not all parents are easily placed or happy and adjusted once placed. 

odowd

JJ401 wrote:

Roommate stealing — things disappearing in SNF or MC are common. That is why most facilities tell you not to bring items of value and to mark everything with a name. Sometimes the item is actually taken, but most often another patient is in the hunter / gatherer stage  and is just moving things around. Sometimes the resident themselves has carried it around and left it somewhere in the facility and another resident has picked it up.  In a SNF or MC possession does not always mean stealing.

Thanks for this perspective. I just wanted to note that the roommate in question had NO cognitive issues.

odowd

Wow, glitter. Thank you SO much for sharing this. Reading about your experience brought me to tears. So much of what you describe with your mom is very, very familiar to me. Sad, crying often, hard to redirect... the staff also dotes on my mom, and my brother visits her for a couple hours 3-4 times a week.

I am planning to talk to the psych NP again about whether we can make some adjustments to her medications and see if we can make any progress that way.

glitterqueenscare wrote:

Hi - I live in Michigan and was cautioned about the waiver program here when my Mom's care made it necessary to get round the clock aid.  We were told to expect the issues others have mentioned such as workers no showing or constantly having to retrain new workers.  We also had to wade through a long approval process that wasn't exactly certain and it sounded like we would of still ended up with out of pocket that would have been pretty steep because it wasn't certain how many hours of care we would have received once approved. We opted for full medicaid approval. Once she was approved we placed her into SNF.  It has been the hardest thing I have ever done. It is something I have grieved for a year.

She isn't happy, far from it. She does have good days and many staff members dote on her but she is confused and not able to reason or communicate well. She is sad, cries often and hard to redirect. Although staff try to cheer her up or direct her she ends up pacing most of the day alone or with staff. I try to stop in to see her a couple of hours 3-4 times a week and bring her treats or take her outside in the courtyard. She no longer begs me to take her out of there but only because she isn't able to form the words as easy as she is becoming less and less able to verbalize her thoughts. 

I work from home full time and have for years, way before the pandemic.  I originally thought I could care for my Mom and have caregivers during the day and take care of her at night. Once I did it I realized how out of my depth I was. I lasted a year once we moved in together full time. Its just not realistic.  I was cutting myself too short and my health was sliding, I had no time to restore myself. I did have a decent caregiver most days while I worked but no help on weekends or evenings and worked all day. I had very little relief. The game changer for me was when I couldn't really leave her safely in a room anymore to so much as go to the bathroom. She was becoming a full feed, I had to dress her, bathe her and take care of all the bathroom functions daily. Even with caretaker help it was just too much. Are you ready to fend for yourself on most weekends, holidays, etc. My employer was wonderful when her caregiver called in but it was one year, I am not sure how he would of felt if it had been longer. 

I have had to work on making my peace with the decision. There simply aren't a lot of resources out there and if you work full time, even from home, my experience was that caretaking is the number one need in the house and everything else will slide. Your job, health, social life, appearance, diet, fitness, mental health, everything will be second to it. My Mom would not have wanted that for me, I am sure yours wouldn't either. Its hard to think of them suffering, its a horrible disease with such protracted pain and grief over years and years. I just wanted to say you aren't alone, not all parents are easily placed or happy and adjusted once placed. 

BlackCat1

qlitterqueenscare- my LO is not happy in a SNF either.  My spouse tried to care for her while working from home for a year and did a great job, but it was very hard.  We tried to bring our LO home for a few days during Christmas and it was unbelievably challenging.   It's hard to believe that the disease gets so much worse - but it does.  I would have thought that when they are wheelchair bound that they can no longer wander and that we wouldn't be dealing with the stress of someone's nonstop pacing but now our LO tries to throw herself out of the wheelchair all day long.  She tries to throw herself out of the bed which is scary because she will fall.  It is hard to make peace with your LO not being happy.  My LO can't express her unhappiness often now but we know.  This is a devastating disease.  We have her in an amazing SNF and we have done our best.

JJ401

Seven phone calls in one day. My guess is that she doesn’t remember calling earlier. I’d have someone (on staff or your brother) make the phone disappear. At most facilities here there is a unit phone staff can bring to the resident when a relative calls. You call her, not she calls you.

If she is fine when you visit, and you know from others that she’s fine when they visit,  you have to learn to gloss over the I’m unhappy on calls. It’s unusual, almost never heard, that a facility resident says they are happy with their placement.

odowd

Just thought I'd share an update and ask another question (I know, I have so many!)

I was referred to the PACE program in Michigan for a consultation, which I had over the phone yesterday. It sounds like a possible option. But I am touring their clinic and meeting with them Tuesday while I'm in town visiting mom.

Has anyone had firsthand experience (good or bad) with a PACE program in their state? 

dayn2nite2

odowd wrote:

Just thought I'd share an update and ask another question (I know, I have so many!)

I was referred to the PACE program in Michigan for a consultation, which I had over the phone yesterday. It sounds like a possible option. But I am touring their clinic and meeting with them Tuesday while I'm in town visiting mom.

Has anyone had firsthand experience (good or bad) with a PACE program in their state? 

I'm sure they promised the world.  The reality is quite different and is what was outlined already.  I don't have time to re-read right now to see where you are, but if you're in the area I guess you'd be able to fill in when the workers don't show.  This will be often.

If you live far away, you need to ask them what happens when the aides don't come.  Often it's a last-minute call and frequently they don't even call, you figure out for yourself after an hour or so that they probably aren't coming.

JJ401

 You are coming from out of town to visit and check out Pace. Your brother should be with you when you meet with Pace as he is the in town person who will have to deal with any problems that arise. He needs to be on board with this change.

I’ve never dealt with Pace, but my understanding (and I could be wrong) is that you deal with them as gatekeepers. You use their primary doctor. They provide dental. It could be great.

But, their primary doctor and/or dentist is most likely not the one your mom currently has. If you are fine with switching, perfect. In some of your posts you mention a Geri-psych, will your mom still have access to this doctor? 

Do you live in an area with weather such that things close when it is bad. I’ve heard Pace centers closed today in the closed announcement on bad weather days here.

Think carefully before you leap. If you leave the SNF where she is getting good care, it may be difficult to get her readmitted if you decide Pace isn’t working.

kf21843

My 95 year old dad entered a SNF about 6 weeks ago after a short hospitalization following Covid. He lived previously in assisted living for about 3 months, with my mom who died suddenly only a month after the move to assisted living. Until this last hospitalization, my dad was driving and managing somewhat independently, although having some urinary incontinence issues. Upon hospital discharge we were advised to seek SNF. This was the first time dementia had been diagnosed, even though my dad saw a primary care Dr regularly and a family member accompanied him. We were also advised to try hospice. Hospice nurse told me that dad is 7a! We just dropped hospice so dad could get PT to possibly help him ambulate enough to transfer without a lift or maybe to even use the toilet. Dad is very upset about being in diapers and being dependent. I am at a loss as to how to give dad a better quality of life in the time he has left. He refuses to go to the very  few activities offered at the facility, possibly bc they are usually in the afternoon when he is tired and starting to get confused and agitated. Any suggestions on how to keep dad occupied or to help him deal with his lack of mobility and incontinence ?

mommyandme (m&m)

kf21843,

Welcome to the forum! It’s unfortunate that you need to be here but glad you came.  It’s bountiful with support and knowledge.  I’m so sorry that your dad is uncomfortable with his new reality, we here understand the pain in trying to help our LOs live a good life while they decline.  

This is a long thread started by someone else, you may get a better response if you start a new post with your questions which is a green button at the top of the forum.  I wish I had some ready answers for you.  I expect more to come along especially if you start your own new thread.  

I am primary caregiver to my mother at her home.  One of my first thoughts are these:  Has he been thoroughly tested for a UTI?  Sounds like his decline is rather steep and sudden.  Silent UTIs often mimic a decline in cognition but can be treated which often brings our LO back to baseline. Also if a UTI or some other Vitamin deficiency or brain impairment isn’t involved and your dad is truly stage 7, PT may not be that helpful as many dementia patients don’t remember the steps to take to improve their mobility from day to day or possibly minute to minute.  

This is very difficult to navigate and must be especially unnerving with the speed of your father’s decline and the loss of your mom so suddenly.  I’m very sorry!  

Please keep coming back and sharing.  

dayn2nite2

kf21843 wrote:

My 95 year old dad entered a SNF about 6 weeks ago after a short hospitalization following Covid. He lived previously in assisted living for about 3 months, with my mom who died suddenly only a month after the move to assisted living. Until this last hospitalization, my dad was driving and managing somewhat independently, although having some urinary incontinence issues. Upon hospital discharge we were advised to seek SNF. This was the first time dementia had been diagnosed, even though my dad saw a primary care Dr regularly and a family member accompanied him. We were also advised to try hospice. Hospice nurse told me that dad is 7a! We just dropped hospice so dad could get PT to possibly help him ambulate enough to transfer without a lift or maybe to even use the toilet. Dad is very upset about being in diapers and being dependent. I am at a loss as to how to give dad a better quality of life in the time he has left. He refuses to go to the very  few activities offered at the facility, possibly bc they are usually in the afternoon when he is tired and starting to get confused and agitated. Any suggestions on how to keep dad occupied or to help him deal with his lack of mobility and incontinence ?

If he's in stage 7, PT isn't going to help him.  Get hospice back.  You mention he was having urinary incontinence issues even prior to the hospital, so he needs incontinence briefs, that's a non-negotiable.

If he's only been in SNF 6 weeks he can take up to 6 months and some people take longer to adjust.  He's gone from assisted living to hospital and now to this place in a short span of time, so give him some more time to get involved in activities.  

As far as why you didn't know he had dementia, a lot of doctors operate on "don't ask, don't tell" so if memory wasn't brought up, the doctor wasn't going there.

Make sure he is being brought out into the common area after breakfast and if all he does is watch everyone else, that is good.  Eventually he will get used to the structure.

I would just advise you to enjoy the time he has left.  I think when my mother entered stage 7 she had just stopped walking and she lived for another year at the SNF and with hospice.