When moving LO to AL Causes MORE Stress, Not Less

Lgillis4

Hello caregivers -

A somewhat lengthy post, apologies -

My Dad (currently 85 years old) was my mom's (currently 86 years old w mixed dementia) primary caretaker at home for about 3 years after she had a stroke.  He could no longer do it as she's very mobile and active. Therefore, was getting herself into trouble at home and causing great frustration for my poor father.

 Like many, we never wanted to place her but if we had to, we always wanted to place her in a nice AL, not a nursing home. We happened to come across this GREAT Assisted Living place at the right time as my mom was accepted into a good financial program the AL offers.  Beautiful place, great reviews and my sister and I felt so comfortable with moving her in there.  She is in the Memory Care unit of the AL.

    She moved into the AL mid June and lasted 5 days before she fell and bumped her head.  Spent 2 weeks in the hospital and a month in rehab (she was ready to be discharged after 2 weeks but that's another frustrating story).  Turned out she had a UTI which she was treated for.  Went back to the AL, back for one week and she starts showing signs of infection again. I ended up staying unexpectedly overnight with her.  It was either that or we would have to send her out to the ER Again.   So currently being treated again for UTI.  Not only that, my mom has never been a good sleeper since she developed dementia;  no matter how tired she is, there are days she will fight going to bed.   Last night I get another call stating she fell and bumped her head.  Again.   She is supervised throughout the day as she sits with other residents/aides and they do hourly checks overnight.  However, not supervised 24/7.  Not sure any place has 24/7 supervision every minute of every day.   We now have been hiring an overnight aide ($$) to watch her overnight.  The one night we didn't have the one on one overnight aide is the night she fell again. 

I could go on and on with the bad luck stories we have been having lately but long story short, placing her was supposed to take a load off of all of our shoulders and relieve stress but it hasn't!   I don't think I've ever been more stressed through this whole dementia ordeal than right now, despite her being taken care of by more people, getting cleaned up every single day, having activities to be involved in all day etc.   I think there was only one day at the very beginning of the AL move where I felt a load come off my shoulders and was so happy.

  Just at a loss and not even sure I'm looking for answers from anyone - just curious if anyone else has experienced this though:      Has anyone ever had to move their loved one from an AL to a nursing home?   If this beautiful AL with all the boxes checked isn't the right place, then what is??   I'm afraid what's to come if we have to move her somewhere else.   

Just want peace and happiness for my mother in these last years of her life.   I want peace and happiness for my family,  knowing we made the right decision by placing her but so far,  it seems it has been a big mistake and has been one thing after another after another.   We thought we were doing the right thing and best thing for my mother but we cannot seem to catch a break!

Thanks for listening   

BassetHoundAnn

Hello, Lgillis4,

I can totally relate to everything you're going through. Has your mom been evaluated for hospice? Qualifying for hospice care doesn't necessarily mean death is imminent. 

I placed my mom in an AL memory care about a year ago and have experienced much of what you've been through. Because of frequent falls aids were calling 911 and sending her to the ER every week or two. Then they'd call me and I would have to rush to the ER in the middle of the night only to find doctors had already performed tens of thousands of dollars' worth of MRIs and CT scans and whoknowswhatall. And a week later they'd be doing it all again. 

Once she qualified for hospice life became sane again. Omigosh did it ever! Now when she falls the aids call hospice not 911. A hospice nurse goes out to evaluate her. And they invariably find that she's o.k. End of story. 

The hospice nurses have been a godsend. They also visit her 3x a week to change, bathe and spend time with her. I feel like a great burden has been lifted from me in so many regards. There are extra eyes and ears watching mom and helping her, as well as making suggestions for care and medication changes. 

Medicare has been paying everything now that she's under hospice. Drugs, medical transport, nurses' visits, everything. Prior to hospice mom was racking up thousands a month in ER, ambulance, and medical transport bills for all those fall visits. 

I strongly encourage you to have your mom evaluated by local hospice agencies. 

As far as the frequent falls go, even a skilled nursing facility is probably not going to be much help, although I could be wrong. For my mom, the memory care moved her room next to the nurse's office and across from the dining room so more staff would see her than when her room was in a distant wing. This has made a big difference. When she goes tottering down the hall there's usually someone nearby to grab her to keep her from falling. 

There are still the occasional falls at night when staff is scarce. But when they do happen they call hospice instead of me and that's a help. 

Good luck! It's a frustrating situation. 

towhee

Hi Lgillis4, I see you have fallen into the "everyone said we would have no more problems once she went into AL" rabbit hole. If it is any comfort, you are not alone.

I have never heard of "every minute supervision" short of private care or overburdened family member. If your LO is supervised during the day and has hourly checks at night, I very much doubt a nursing home would be any better, and might actually have less supervision, especially at night.

For falls, these are some points to consider:

One- she is in an unfamiliar environment; it is easier for her to fall. Make sure there are adequate night lights, what is adequate for her might be brighter than you are comfortable with. Take a good look at the room, see if there are things she might fall on, and if she has furniture, walker etc. available that she can hold onto.

Two- what is the facility policy on bed and mat alarms. A MC is more likely to allow these than a nursing home, especially one that takes Medicare rehab or Medicaid. How useful these are depends on the facility staff.

Three-- Low Beds- a good nursing home will be more likely to have a bed that lowers close to the floor, but some MCs will let you buy and install one. However, if your LO can easily get up from a low toilet, this might not help. Some mattresses have higher sides and are harder to get up from, but again if your LO is very mobile they can do more harm than good.

Four--Check Medications--see if any have been added since admission to MC. Occasionally there are side effects such as dizziness, balance or vision problems.  Adding medications--sometimes it is necessary to add something for sleep. If you have private staff there for a few nights it makes sure that side effects are noted.

ER visits- you are more likely to have in house medical staff in a nursing home, which might cut down on these. You can also have an agreement with the MC about calling you first, and palliative care or hospice can be very helpful.

General--a Nursing Home might be better at keeping someone hydrated and noticing constipation, it depends on facility.

When my LO got out of rehab we did move them to nursing home instead of back to MC, primarily because of the low bed, mattress and soft mats by bed, which the MC would not allow.

It is never going to be perfect anywhere. I know you are worried about your mom, but it sounds like she is getting good care and at least your dad has been able to get a good night's sleep.

harshedbuzz

Lgillis-

I am truly sorry for you and your family in this situation. Truly.

But I feel like your expectations may be unrealistic.

Certainly, you can hire out or delegate the physical labor of caring for a LO with dementia. It sounds as though you have found a good MCF and that they are doing the right things to keep mom safe and even engaged with others. Clean, fed, safe and reasonably contented may be as good as is possible for a PWD in your mom's stage. Peaceful and happy may not be possible for her now.

But-- there's always a but-- there is no way to assign the real heavy emotional labor of dementia care to professionals. The burden of worry and caring never fully go away so long as your mom is living no matter who is tending to her physical needs. There is no facility in the world that checks that box. 

This might be one of those situations where you aren't going to find perfection- the situation at home wasn't sustainable and she was likely headed into care if your father passed first. This sounds like you chose a lovely place- my dad's MCF only had overnight checks every 2 hours. 

In your situation, I would look to do 3 things.

Firstly, I would make sure the UTI is cleared. All positive UTI tests should be followed up with a culture to make certain she is being treated with an appropriate abx.

Secondly, you should look at the falls. How is this happening? Is she tripping, passing out, unsteady, weak, dizzy, or just sitting down? PWD fall a lot. If she's falling out of bed, maybe her bed could be lowered. Sometimes this can be mitigated by looking at medications to see is something they take has this as a side effect. Dad 's PCP took him off his BP med as he was no longer hypertensive by stage 6. We also looked at some of the psychoactive medications he was taking but decided the risk of falling was worth not having him constantly anxious and responding with agitation and aggression. The other thing was that sometimes dad would just sit on the floor if he was tired or felt dizzy and sometimes we'd get a call that he'd fallen when he really hadn't. 

And thirdly, it seems like the overnight aide was helpful for prevention. Perhaps that is your answer if your family can afford it. At some point in time, this behavior will likely fade. There is no facility that offers this level of one-on-one supervision; families provide it either by hiring privately, taking turns among themselves or doing some mix of the two. When my aunt with dementia broke her hip, her 86 year old sister, her late son's widow and her disabled daughter took turns acting as a sitter as my aunt couldn't recall not being able to bear weight. They didn't have the assets to fund private care. Getting hospice on board might be useful.

A move to a SNF will provide a different kind of care but not necessarily better, more appropriate or to the same level of attention overnight. A MCF with dementia-informed activities and dementia trained staff would be a better placement overall. When my other aunt had dementia, she started out in a lovely CCRC which had many different levels of care. She spent 5 years in the MC wing but initially was included in some of the activities and outings for the Personal Care/AL folks because she was socially quite competent. Over time she needed more skilled hands-on physical care, so she was moved into the SNF floor of her building but until the last year she spent most of the day in the MC wing doing activities and hanging with the staff and residents there. In general, for someone who isn't actively dying, I feel like the quality of life in MC is probably better. 

HB

Quilting brings calm

You need to wait until several weeks after the UTI is cleared before  you make any decision about moving her.  My mom is an entirely different person when she has an untreated UTI, physically and mentally.   She  could barely walk by the time that we got the right hospital that diagnosed her. She spent a week in the hospital and a month in rehab prior to moving to AL.  So your mom’s falls could be part of the UTI. 

It also takes a few months for people to acclimate tp a change in their living arrangements.  During that time, you do find yourself spending  a lot more time and stress rhan you might later.  Same with hospital stays 

There is also the fact that the MC is there for her daily care, but they are not her legal POA or guardian.  There are still responsibilities  that fall on you or your dad.  However at least you can sleep at night, run errands, visit friends, etc.  

Lgillis4

No, she actually has not been evaluated for Hospice yet and we will have to have a more in-depth discussion about it with her doctor.  I was hoping Hospice could help out somehow on the overnights but from what I already found out about it from the doctor, they would not help w overnight.  They would just help out with ADL's etc during day, which she would get help with anyway by being in the Memory Care unit.     But I will still look into it as far as the aides calling hospice on the overnight if she falls and possibly having someone go check her out for me to make sure she's not terribly hurt.  I think I'm going to be getting phone calls late at night more often than not if we can't get her on a normal sleep schedule.  The nights we don't have an overnight aide, Im just going to be awake worrying all night and that absolutely stinks.  Thank you so much for your input - it helped a lot!

Ed1937

"My mom is an entirely different person when she has an untreated UTI, physically and mentally.   She  could barely walk " My wife was the same way. She was also so confused, if the neighbors heard her, we would have had the police visiting us. When the infection was treated successfully, she was back to baseline. UTIs can be devastating.

Lgillis4

Thank you, all good points.   Her doctor is actually going to take her off some of her meds to see if that might help.   Also thinks that some of them aren't even beneficial to her anymore.  As far as the AL and what they will allow,  I know they are not allowed to have bed alarms on the bed, or long bed rails.   And yes! I, as well as the rest of my family, have fell into the "AL will make everything better" rabbit hole ☺.     Its funny because I remember the conversation I had with the assistant director of AL, telling me that we would no longer be "solving problems" and would be able to just have a pleasant visit with her and leave whenever we want.    That's the farthest from the truth - I feel like all I've been doing is solving problems more than ever.  Sad it has to be this way!  Even a social worker in the past not related to the AL said something similar, how we could go back to being her daughters and my dad her husband instead of her 'caretaker' once we place her.  Anyway, rant over -  thanks for the helpful information.

Lgillis4

Thank you for this helpful post.  I guess what I mean by wanting peace and happiness is this:  I feel guilty having to have moved my mother out of her home for the past 48 years and into a memory care unit as it is.  If these are the last days of her life, I just want her to have some good ones; not days falling and getting bruised up and swollen, then so tired she sleeps all day and misses the activities/entertainment she may actually have fun with.  She was only in the AL 6 days and then ended up in a hospital/rehab for the next 6 weeks.  She moved back to AL, there only one week, and here we are again, a swollen head, two black eyes etc.    I just would love for her to have at least a FEW good days in a row. But every time things seem to look like they may be headed in the right direction, something else happens and we now take 2 steps backwards.  I guess I'm just frustrated, not patient enough and yes, maybe I am expecting too much.  But just would like her to have a few consistent, good days there and that has yet to happen.  

Anyway, these are all great points to consider and think about.  She is going to be taken off some medications so hopefully this will help and prevent the falls.   On the flip side, not sure if this will increase her insomnia and make her fight sleep.  I do believe her falls have happened when she has not been supervised during the night.  This last fall - they put her into bed and left her room.  Next thing you know, she is up and out walking in the hallway and down she goes.    Thankfully she was able to get herself up so paramedics weren't called.   

Thanks everyone

windyshores

My mother has been in an ALF for 7 years. I would definitely counsel lower expectations, though a memory care unit is probably more attentive. For these 7 years I have had to provide a lot of the care, medical management and so on. But...I can drive away.

My mother had numerous falls. Fewer as she becomes more unstable, believe it or not, because she has slowed down.  I agree with the other posters about a new, unfamiliar environment being a possible factor, as well as medications.  Can she have a commode by the bed for overnight?

 We have an excellent hospice but their services don't really take a load of my shoulders. The aide does wash her in the am but only stays 20 minutes. Nurses come twice or three times a week. It is nice to be able to call them.'

In our state we have a form called a MOLST. We have maximum restrictions on paper: no artificial nutrition or hydration,  DNR, no intubation- and no transport to hospital. I had the MD invoke my proxy due to dementia so I speak for my mother, legally.  If she needed the hospital, they would have to call me for consent. They also have to call me before certain meds, by agreement.

I don't think there is any placement that effectively relieves stress on families- but  as  I wrote before, we can drive away.  Private aides are a great idea but expensive and who knows how long our parents will last?

It sounds like your mom is in a really good place with relatively good services. Dementia can sometimes qualify for hospice. It depends. The falls and the infection are upsetting but I wonder if the falls will lessen as she gets used to the place.  Again, commode might help or she could wear Depends at night. If that would help. Good luck!

May flowers

I can relate to the MC move not being nearly a relief as I thought it would be! 

There’s a lot of good advice here, just a few thoughts - maybe the doc can prescribe something to help her sleep that didn’t make her unsteady during the day. For my FIL that is risperdone and melatonin but it could be different for different people. Another idea is to see if the facility is willing to use a bed or floor alarm mat that would alert the nurses’ station if she is getting out of bed.

You might find after the doctors take her off some meds she sleeps better too! This happened with us - he had the opposite reaction to many meds.

MN Chickadee

Oh I hear you. There were months where I cringed every time the phone rang because it was always something. We had wonderful care at mom's two MC facilities but problems and phone calls are inevitable. Falls are inevitable. No facility can totally prevent them. Even family caring for someone at home they fall, all you have to do is take your eyes off them for a second. In my mother's case a UTI always meant more falls, it was the first sign she needed to be tested. Make sure you get that cleared up. Towards the end the UTIs just kept coming. But even if they clear falls are a part of dementia. The brain controls balance and depth perception and gait and they all become affected.  Finding a sleep medication that works may help, because it means she won't be trying to get out of bed unsupervised. And yes discontinuing meds that aren't essential sometimes help. I would be surprised if skilled nursing gives you what you are looking for. They also won't prevent all falls, and may actually be less able to provide dementia informed activities and enrichment. If you think another memory care facility would have a higher staffing ratio, better training or care you could shop around for another MC. We did end up moving my mother in later stages. The first place started out great but didn't come through pandemic staffing struggles very well and I decided the care was no longer acceptable and moved her (and the new place was much closer to me which helped a ton in later stages.) But if you feel the current facility is doing well with care it might just be the way it is for now. 

Have you had a care conference with the facility regarding this? When you get all the different heads involved put together sometimes you can come up with some little things to help prevent falls. But nothing will be 100% it just isn't possible. My mother had strong bones and somehow kept coming out of the falls with minimal damage.  I knew eventually some incident was going to be the straw that broke the camel's back and send us down a spiral to the end. I was always ready for the broken hip call but covid got her first. We had numerous difficult experiences in the emergency room, because if someone falls the facility has a duty to make sure they are ok. The ER is a difficult place for a PWD; they don't understand dementia and are not equipped to care for a PWD even for a short time.  I would fight off the phlebotomist because they were young and clueless about dementia and mom would fight them; we were able to have blood draws at her facility in a much easier setting. I would definitely look into hospice. Then the facility will call the hospice nurse and not the ambulance. If for some reason something came up and you wanted her sent to the ER and treated you can pull her off hospice, but at this stage in the game for most of us the number one thing is comfort making the last days as peaceful as possible and that's what hospice is all about. You can call numerous hospices and have her evaluated to see if one will accept her. You do not need a doctor's referral, hospice has their own physician that makes the decision. 

I'm going to suggest what is going on with you is the grief we feel when we place a LO - for all they are losing and we are losing, for what should have been, the unfairness of it all. The undeserved guilt for doing what had to be done as their POA. The grief involved in dementia starts long before our mothers die. Their bodies are still here but the grief is so real and painful. The bargaining stage of grief is the what ifs, the what else can I do, the if only I had done this and that differently. It's normal to question every step and decision and feel like you can't win. Because really you can't with this disease. All we can do is our best. All I can say about the grief is to let yourself feel it and sit in it. I'm sorry for what you are going through. It's a painful journey but we do come out the other end one way or another.