Questioning My Caregiving Standards

Joe C.

When I came to terms with DW’s cognitive decline about 7 years ago (pre-diagnosis) I made a promise to myself that I would provide DW the “very best life possible” and would care for her as long as I could. Up until the Covid lockdowns DW & I maintained a fairly active lifestyle traveling, socializing with friends & family going to shows, the beach and others activities we always enjoyed together.

Back 7 years ago I set 3 criteria for when I would give up care of DW to others:

1. When I believed someone else could provide better care than I could. 

2. DW was a danger to herself or myself. 

3. The stresses of care giving became a danger to my health.

Fast forward to the present and I still have trouble believing someone else could provide better care for DW and I do not feel that DW’s is a danger to herself or to my health but DW declines have introduced so many challenges I did not anticipate at the start of this journey. These challenges include: 1. DW no longer believes our home is “her home” to the point where she will insist on leaving several times a day and I have to take her for a ride or a walk to calm her down. 2. DW’s decline in personal hygiene and etiquette which is making it increasingly difficult to take her out in social situations. 3. DW is constantly looking for the “other people” and carries on conversation with the people in the mirror on a daily basis.

These declines and others have recently started me questioning my original promise to myself that I would provide DW the “very best life possible”. With DW constantly having the need to leave the house, looking for imaginary people coupled with the difficulties of carrying on any form of a social life sometimes make me feel like I’m keeping her prisoner in our home.

These thoughts and feelings are making me ask the hard question: Is the time for MC placement approaching? I do not believe that MC will abate DW agitation about where she lives nor do I believe they would have any better success dealing with the personal hygiene issues. On the other hand, being in an environment where there are actual “other people” to engage with and there are structured activities to participate in may provide some social enrichment which I am struggling to provide at this point.

It sucks thinking about this but possibly MC would provide the “very best life possible” at this stage.

LadyTexan

Dear Joe.

Your analysis is comprehensive and well thought out. 

I have heard that some PWD thrive in memory care because of the socialization. I suspect it depends on the memory care and the staff training and the available activities.

Please don't question your caregiving standards. My perspective is that this is not about one option being better than the other. It is about the difference in opportunity and how your wife responds to the opportunity. 

Quilting brings calm

Joe

You’ve put  a lot of thought into your current situation.  I think you are correct that MC would provide her with ‘others’ to talk to, feel comfortable with, without the need to leave.  She might even be less agitated.  She currently doesn’t recognize what is her actual home, yet she’s being told it is her past and present home. The MC would not have that split personality. It’s not her home, but it is a new place to be. They will help keep her busy too. 

I think you are also under more stress than you realize.   Having to leave your home several times a day, foregoing socializing yourself because it’s becoming difficult to take her, all contribute to neglecting self care. By the time you realize your health is deteriorating, it  may be too late to fix it. I think HB has a cautionary tale about her parents in that regard? 

60 falcon

Hi Joe. I agree with the others that your post is well thought out.  It's clear to me that you are a great caregiver.  Your post is spot-on for things that I've been thinking a lot about lately.  I agree that it sucks thinking about MC.  

What bothers me most about this process of considering long-term care for DW is that I think it would be mostly for my benefit and well being rather than hers.  And that just doesn't feel right to me.  It feels incredibly selfish when I think about it. But, there are more and more days when my stress and frustration maxes out and on those days I know in my heart that the situation is not healthy for me.  My plan is to enroll DW in a new adult day care that is supposed to open in Sept. 

I keep telling myself that I (all caregivers) matter too.  I'm looking forward to hearing what others have to say.  

Stuck in the middle

Sounds like it's time.  I agree with everything you said, especially the part "it sucks"

M1

Joe that is indeed very well thought out, it helps me think about it too. A good framework.

I disagree on one point though: I think the wandering Is a danger to herself. You are handling it, but it is nonetheless dangerous. If you missed it, if she got away from you even during a bathroom break, tragedy could ensue.  My point being that I think your criteria are met.

Regarding the hygiene, its interesting how at least sometimes our loved ones are more cooperative with strangers. Perhaps another criterion met.

You know you've got support here regardless.....

Ed1937

Joe, I think the things you mentioned are the same things that many of us consider. I highly doubt my wife would get better care in a facility than I could provide (at least at this time). Maybe if you are ultra rich you could make sure there was someone with her every second seeing to her needs. I doubt there are many of us on this board that would fit that category. And none of the caregivers would have an emotional attachment to the PWD the way we do. And although I don't really know, I think that's why LT brought her husband home. And that's understandable.

My wife rarely leaves the house anymore. But fortunately, at least one of our kids come over once a week or more.

I'm not sure how you would know if the stresses become a major health problem, unless you have a heart attack or something.

harshedbuzz

Speaking as an adult child, not a spouse to some of the points made by Mayor Ed.

My dad got much better care in the MCF because he interpreted the staff as professionals and cooperated with them around eating, drinking, hygiene and medication. He would do things for them he would not do for my mother or myself. He always commented on how kind the staff were to him; when he died, they all commented what a gentleman he'd been in all their interactions.

He also got my mother back as a wife. Time spent together was more positive than because his care was no longer a burden on her which is odd because she still did the occasional shower, toothbrushing and nail care in the MCF. The only picture I have of either of them smiling from the last 12 years is one taken at a party in the MCF.

It can be hard to know when your health is taking a hit from stress especially if your duties as caregiver have put routine self care on the back burner. I know my mother was the frog in the pot of warm water set on the stove even with me stopping by most days to check on them. Two months after he died, she nearly did from a COPD and BP crisis then two months after that she lost the vision in one eye from damage to her optic nerve which means she can no longer drive safely. She deferred a lot caring for dad thinking she'd have the opportunity to do things when caregiving was over but is not able to live life in stage 8 as she would have liked. 

dayn2nite2

You can keep her at home as long as you like, but do you have everything set up should you have a heart attack, stroke, terminal illness or something that may cause an interruption in caregiving by you?

Like legal documents instructing people (in case you are dead or incapacitated) which facility your wife goes to, how that is to be funded, etc.

If you've been here for any length of time, you know that some of our spouse caregivers have had cardiac or cancer or injuries, needed surgery requiring rehab.

David J

Joe, I’ve been thinking the same way lately. I never planned on keeping her home until the end, so the only question is when to place her in an MCF. Like you, I tried to set criteria based on her well-being and my ability to provide care. I know intellectually that my health is important too, but it is so hard to put that ahead of DW’s needs. I started looking into local facilities last year, setting criteria for timing because of COVID:  the end of COVID outbreaks in long term care facilities, full vaccination of residents and staff, allowing visitors, the end of lockdown, etc. Well, we’ve met all those but I’m still not ready. Every negative incident weighs on me, and I wonder if now is the time. Increased incontinence?  I can handle that. Taking her with me wherever I go? It’s hard but we manage. Freaking out in public? I am not embarrassed by anything she does. The house and property a mess?  Nothing that can’t be fixed later. Inability to schedule my own health needs?  It can wait. But all those things together make a huge weight to carry. 

So many of us here are facing this momentous decision, fearing the consequences of placement. The caregiving won’t stop, and will even bring new challenges. The money saved for our retirement will be spent on one person’s care, maybe leaving the caregiver in financial stress. Caregivers will lose some control over the care and safety of the PWD. The caregiver’s fear of being totally alone and the loneliness of not having the PWD with them is daunting. Will we feel guilty about giving up on home care or relieved at the reduce responsibility? Both at the same time? It’s no wonder some of us are emotional wrecks when considering this decision. 

Joe, you very eloquently put into words what so many of us are feeling. Thank you. 

Dave

Crushed

two points

1. DW no longer believes our home is “her home” to the point where she will insist on leaving several times a day and I have to take her for a ride or a walk to calm her down.

 3. DW is constantly looking for the “other people” and carries on conversation with the people in the mirror on a daily basis.

DW started "wandering" because of #1 
and at the same time developed #3 Mirror self misidentification, which is a psychosis  

https://en.wikipedia.org/wiki/Mirrored-self_misidentification

These two condition combined with my own deteriorating health was why DW went into memory care in 2017. 

Jeff86

Your posts, Joe, demonstrate what a great caregiver you are.  

I must admit that when I first began to deal with my DW’s diagnosis, I had nothing like the carefully thought out criteria you outlined for providing care at home.  I simply, naively, assumed I would care for her at home till the end, as I knew she hated the idea of being in a MCF or nursing home.  

Of course, I have had to re-think such a position.  As I learned more about this terrible disease, it became clear that there were (at least) two circumstances in which keeping DW at home would not be the optimal situation:  if she could be better cared for at a MCF, and if I were unable to provide care.

Further, I’ve modified my thinking about ‘better cared for at a MCF’ which I thought of primarily as a medical imperative.  I now think that ‘better cared for’ could also be social, psychological, and other reasons….

You also note, so rightly, the onslaught of unanticipated challenges that keeps coming and keeps coming.

My DW’s AD has progressed to a fairly similar point to yours, I think.  The lack of recognition of our home as home, for sure.  We’re sliding into hygiene issues—tooth brushing is a grumpy affair that I know is on the brink of turning into refusal (just the way taking medicine was), and showering is a bit of a struggle some days.  And for socialization—with vaccination in the rear view mirror, we’ve done a little socializing with friends or family, but DW is mighty quiet mostly in these situations.  I wonder, in a MCF setting, if she would do more, participate more, relate more to other people.  In other words, might she actually be doing better, not at home?

This is an agonizing decision.  This morning, my DW rose and came downstairs before me .  When I came downstairs, the front door was open and I thought, uh oh.  Fortunately, she was sitting in the living room.  I helped her up and asked if she would like to go to the bathroom—she never thinks to do so, on her own.  Normally, she’s very compliant but this morning she refused to, started to cry, and said, “Please, just take me home.”

You are framing the issue well and accurately.  It is hard to know where our LO’s would be best off, and there’s a huge guilt factor, a feeling of giving up, that comes with thoughts of placement.  The one thing I can offer you as some solace, something to make it a little less hard to make a decision, is that it isn’t necessarily an irrevocable decision you’re making.  If you decide to continue to care for your DW at home, you can decide later that placement would be better.  Contrariwise, if you go for placement now and it doesn’t seem to be working out, you can bring her home again.  

Wherever you land on this, you have total support here from this community.  And your DW is lucky to have you.

[Deleted User]

The user and all related content has been deleted.

Joe C.

Thank you to all who have offered their wisdom & support as I struggle with this decision. 

For me, this has been and will continue to be a process that began when I started working with a CELA early in this journey. Two years ago I began touring MCFs, selected my preferred facility and put a deposit down. I have involved my stepdaughter in every step of the process and together we revisited the preferred facility last week to make sure we still felt this was the best option when the time comes.

I work hard at keeping myself in good physical & mental health by seeing a therapist, participating in support groups and exercising regularly. Still no one ever knows, so I have set up a bank account that gives my stepdaughter immediate access to funds should anything happen to me and made her aware of all my legal & financial arrangements. 

I often feel that I am creeping to this next phase at a snails pace. I am still not quite ready to make this move but I know it is on the near horizon. I’ll keep you posted as I move forward.

banpaeng

Mr Joe C., All I can say is a big Thank You!!!!!!

I will now explain.  I did not see your post till this morning.  I have been in a constant state of flux for a bit now but the last few weeks have been hell.  Using your parameters, I qualify on all three.  The walking off is terrible but the crying and not talking is the worst.  As my wife is from Thailand, we were going to take her home as her sister wants to take care of her (She can't come here legally because coming to take care of a loved one with a serious condition is not an acceptable condition)  

My sons and I have really been talking all weekend about what to do,  After a horrible day yesterday, we made a decision to put her in memory care.  It is down to me or her.  I am not being cavalier.  It is time.

Wish I could say she could not remember me but she does.  There have been times when she didn't but that was small.  Putting her in MC might kill  me but if I don't it will kill me.  Guess I will go with the might.

Jo C.

Dear Joe; this is one of the most difficult places to find oneself; but your thinking and assessment appears to be right on spot. I have great respect for you and how you have managed the caregiving of your wife; no one could have done better.  As Jeff said; nothing is written in stone. If your decision is for placement, should you ever decide to reverse course, you can choose to do that any time you wish.

My guess is; since you have so carefully chosen a facility that meets high standards and appears to be best fit for your beloved wife, that this may well work out to be the best approach to continuing care for both of you.  It will indeed permit you to be present as the loving husband and not as the exhausted, overwhelmed, overworked person who is near burnout.   That counts for a lot.

One thing:   You mention giving your step-daughter access to funds and have made her aware of your legal and financial arrangements.  You probably have done so; but just in case you have not yet done this; I would hope you have or will set up a Trust as well as spelling out just who is going to be primary and secondary DPOAs for both healthcare as well as for finances; not only for your wife, but also for yourself should anything unexpected happen.  This is so important.

Sometimes, quite surprisingly, our LO may do better after placement then they actually did at home no matter how hard we worked to make things as best as could be.  Rather startling, but such a relief when that happens.  It certainly brings peace to one's spirit.

Not only do our LOs have a period of adaptation after placement; but we too have a period of adjustment.  Must first say this:  I am NOT a crier.  Rust could come out of my tear ducts.   However:

The day of admission with placement of my LO, my DH and I stayed with her all afternoon; we left about 5:00 pm.  Did not feel like cooking; I was exhausted.  We stopped at a lovely restaurant; Mimi's Cafe, to have supper.  We were seated at a table in the middle of the dining room; we ordered.  Suddenly; without any warning whatsoever, and without any control over it, I burst into tears.  Not soft quiet tears; but huge wrenching loud sobs with red face;  I could not stop myself; so embarrassing. We had to get up and leave, walking through the dining room with me red nosed, hiccupping and blubbing. I wonder what the other diners thought - perhaps that my husband was running off with a bimbette.  Cried all the way home, fell into bed and slept until 3:00 am; woke up, called the MC to check up on things, and all was well.   First few visits were difficult when I left the building, but I was still in my own adaptation perod.  The placement turned out to be by far for the best.

I realized that I was not feeling guilty as much as I had regrets.  Regrets that dementia had ever been, and so wishing that things could have been as they were years ago; but that is just human feelings. It was grief for the loss.  Placement is not abandonment; it is still caregiving - just in a different sort of way.

Please let us know how you are doing, we truly, truly really do care; you are awesome on behalf of your wife as her loving husband, her advocate, and her carer.

J.

Battlebuddy

    Joe, 

    I’m so sorry you are in the spot where you have to contemplate placement in Memory Care. I unfortunately am contemplating it for my dear husband. 

    I was like you - in never entered my mind that placement would be part of the care package. I  also wanted the “ best life possible” for my husband , and that could only be staying home with his loving wife doting on him, and his favorite things around him, including his dogs. 

    We wish that could continue, but as you said well , so many factors come into play that we hadn’t anticipated . My husband has a huge family near him with very rare  visitors. So it’s just me and him . He is increasingly mad at me but can seem to be kind and happy around everyone else including strangers in target that he wants to “ hang out with” He thinks he knows everyone  he sees and so I have to dislodge him from people. Because of this even shopping is minimal.Our world has shrunk like yours . 

  We just moved into incontinence , which I could care less about, but he fights me to change him. The struggle is aggravating my bad back which may be the one factor which will determine placement. If he would just let me help him I would be more than happy to. 

   I’m going to visit MC facilities next month when my daughter visits, and develop a solid plan B . I will be watching your decision making with interest as I may be right behind you on the road. For now taking it one day at a time. 

   Thanks for the thoughtful contemplation of the issue. It helped a lot of us. 

Jo C.

Just dropping by to say I am thinking of you,

J.

banpaeng

Wwell I found Memory Care and  started the process.

Beachfan

Hi Joe,

I read your OP, re-read it, put it aside, read it again and read and re-read all the comments.  My first reaction was how fascinating it is that so many of “us” are at this point- - conflicted over placement for a LO.  I am there as well. Regarding your original 3 criteria: 1. I KNOW  no one can care for DH as well as I care for him, 2. He is not a danger to himself or to me and 3. Caring for him does not seem to affect my personal health.  That being said, I am growing tired of caring for him.  He is so compromised and dependent at this point that we provide no companionship to one another. He does not seem to know who I am, only that I am always here.  I love him with all my heart and cherish the life we shared, but “he” is long gone.  

I want to take my grandson on his first plane trip to visit his cousins in Texas; I want to bring my granddaughters to the shore without their parents and let them experience the giddiness of  ‘tween life; I want to play golf and “do lunch” with a friend; I want to sit on the beach with a cold soda and a trashy novel and maybe fall asleep……My selfish wants go on and on.  

Yesterday, I called one of the MC facilities on my preferred list and talked at length with the director.  I am seriously considering a 30 day respite for DH, but primarily for me.  30 days was suggested as a good precursor to possible long term placement.  I promised to call back mid-month to finalize a plan (or not!).  

I know I have the world by the proverbial a#*; DH is easy to care for, we are financially secure, I have wonderful family support, many/most are far worse off than me, but I am tired. I have put in 11 years of active duty, probably more, looking back.  I can empathize with everyone who posted, and those who are thinking along these lines but not posting.  Sorry for the selfish rant, but that’s my story and I’m sticking to it!  I hope all of “us”can find the courage and inspiration to follow the right path, myself included.  Good luck, Joe, keep us posted.  

Battlebuddy

  There is an aspect of this that I keep thinking about and that is how a year of lockdown affected us caregivers. We all had to be lock-downed with a dementia patient which was not easy. I believe it took a lot out of us. In my case, keeping my husband home now requires I lock myself down again . My husband can’t handle church, shopping , the barber etc. so I am essentially having to stay home again . The thought of placement and that I could get out and do a few things socially after that tough year is growing in my heart. No ones fault just the way our caregiving has unfolded. 

    

M1

I think that’s an important point BB. Talking on this forum is the most sane interaction I have most days. I think that influences all of us

Stuck in the middle

banpaeng wrote:

Wwell I found Memory Care and  started the process.

I am glad you are getting the help you need.  I know nothing about this is easy.

Joe C.

 Beachfan wrote:

 I am seriously considering a 30 day respite for DH, but primarily for me.  30 days was suggested as a good precursor to possible long term placement.   

 When the time comes my plan is to start with a respite stay to make sure DW acclimates well before committing to a long term placement. One reason is just to see how she is doing in the MCF but the second is financial. The facility has a $7500 community fee for permanent placement and I want to make sure things are working out before I pay this fee.

I am planning on trying to keep DW home through the summer. Our wedding anniversary is in mid August and I can not imagine placing her before then, even though she will be oblivious to the significance on this date. I also want to take her on one last vacation. We have rented to the same Vermont property for over twenty years, DW has always loved this place and I want to go one more time. My stepdaughter and brother-in-law are going with us so I have help and to keep her engaged.

The battle over placement continues to rage between my logical self and my emotional self but now that summer solstice has past and day will start getting shorter there is a new voice saying, “Winter Is Coming” (Game of Thrones ripoff). Dealing with DW’s anxieties is challenging even with warm weather and late sunsets when I can easily take her out of the house but I can not imagine doing this when it is cold, dark and icy. All that being said I am leaning towards a late summer/early fall placements. 

There are so many little things I can start working on now, primarily the paperwork provided by the MCF, figuring out the furnishings and clothing to move. Coming up with the “fiblet” that I will tell DW about the move is something I have begun discussing with my support group but have not landed on. So much to do but I feel my feet are stuck in the mud.

banpaeng

Mr. Joe C.,  We are really at about the same place in this hell.  My wife tried to run already today.  She turned and came back because she had to go to the restroom.  I know funny but true.  I sent my sons a note this morning that I feel like she would run away today.  I still think that is very likely.  If she does, I will let the ambulance take her to the hospital and let them discharge her to Memory Care.  I have a date of the 9th July to admit anyway.  I know it is the chickensh-t way via hospital, but the 9th will be horrible for me.

Face it, there is no good way to do this.  I kind of broke the ice by telling her we need to change meds.  When I get there, I will just say she needs to stay here a few days while meds are adjusted.

I  would like to hear some of the things you said to try to make the transition a bit smoother.

All help is appreciated.

Joe C.

Banpaeng, I think the transition from hospital to MC is a good way to go if the timing works out but that is difficult to get the right timing. Then you could just say she is going there to get recommended physical therapy.

I know people have used the excuse that there was mold or insect infestation was found in the house and they had to leave the house while it was being exterminated. I heard of one person who actually brought in an impostor home inspector complete with uniform, clipboard, etc. to “find” a mold problem that required them leaving the house. 

I was you and your wife the best in this transition. Please keep us posted.

Quilting brings calm

I haven’t faced the ‘how to get them in the door of memory care’ yet.  Moving my parents to an ASL was easy on the day in question   as Mom was in rehab and Dad was in a hotel. Rehab wouldn’t discharge her until the ASL apartment was ready. Dad hadn’t  done one thing while she was in rehab to find a place for them so they had to accept what I chose. 

Here is my suggestion for you, Joe.  The respite part- just tell her you are going to have work done in the house.  You don’t want her to deal with the noise, dust, smells( paint)  and the people. So  you’ve booked her a staycation in this hotel like place.  You have to remain at the house to supervise and clean up every night.  ( tell her you got a discount for helping).  If you go immediately into a longer stay at MC, the repairs are still not done. At some point. she  either has the ability to figure out your fib, forgets about it, or directly challenges you. If she does, then you have to tell her this is better for her.  I know you aren’t going to walk away and deep down her subconscious knows that too.  That’s probably what she will need to hear. 

Beachfan

Joe,

I am curious.  What is the $7500. community fee for permanent placement?  My 2 preferred  MC facilities have a $2500. “move in fee” for permanent placement.  Wondering if they are the same (only different? LOL). There is no move in fee for respite; the cost is $195./day.  However, if ever permanent placement were the plan, then the move in fee would be required up front, so thinking it through carefully would be important.  

I completely get your desire for the Vermont vacation (on my bucket list, by the way).  We have a beach house at the Jersey shore.  I love it here; DH once loved it, but is oblivious at this point.  Every summer I think, “Is this his swan song?”  This summer is especially hard.  Just a stroll around the block is exhausting; walking 5 blocks to sit on a bench by the ocean is becoming impossible.  Actually spending time on the beach is out of the question.  The days are long when we are here alone, but when the grandkids show up it’s chaos and DH gets agitated and it’s stressful for everybody.  Winters are actually easier.  DH is not anxious, just paces the evenings away, or sits quietly.  You are so on point with your description of the battle between your logical and your emotional self.  I am with you!  I am planning long, in depth discussions with the kids in the near future, but I already know which way they’re leaning.  They love their dad and pop, “he” is gone; they want their mom and Mimi back. I am thinking of you.  Hoping it all gets easier, or at least, acceptable.  

Jo C.

banpaeng, having been in such a situation, I understand the feelings; the second guessing and unsettledness that surrounds admitting a LO to a care facility.   You may want to make some arrangements to get her room put together before she gets there.  The following is something I did for my LO to make the transition a bit easier and more comfortable:

Our LOs often are undone, and agitated with changes; they also feel heightened irritability and sometimes even agitation with too much activity going on around them; especially in unfamiliar places.  So; knowing this about my LO, I did the following.

My LO was going to be admitted to the care facility from the acute hospital; and even if she would not have been, and was admitted from home, I would have done the same thing . . . .

First, I had all the clothing including shoes that would be going with her, have identification name tags put inside of them. I used a black marker pen for the shoes.

Prior to her admission, I went to the care facility and put all of her clothes and shoes in her closet and her grooming items in the drawer provided for that as well as the drawer in her nightstand next to the bed.  She would not have to put up with all that activity and perhaps also have been upset seeing her items being put away.

I also put a pretty twin sized bedspread on her bed that she had liked at home, along with a favorite afghan on the foot of the bed.

She had a favorite upholstered chair she always sat in and it also had a lift mechanism.  I had my step-brother and DH help get that chair and move it into her room which was permitted by the facility.  Familiar objects are comforting and helpful.

I also had some family photos I put in her room as well as a couple of pretty pictures for the wall near her bed to lighten things up in a lovely way.

In advance of the admission, I made sure I had her favorite treats available and some things with her name on them, like her favorite pudding, in the facility refrigerator on her unit.  The lovely people at the facilty asked what her favorite food was; it was fresh fruit plate.

The day my LO was admitted I was so nervous inside I felt like I was quaking.  It was truly such a heartache but there really was no good alterntive. 

So . . .. all clothes in the closet, all grooming items put away - she did not have to have any fuss and muss going on around her while she was trying to process the new room, new people, etc.  My fiblet was that she was going to rehab ordered by the doctor as she was not yet healthy enough to return home. She accepted that. 

The nursing director and unit supervisor came in to welcome her; they were soft spoken and lovely in their welcoming.   About an hour later, the nursing supervisor came in with a fresh fruit plate for my LO. How nice of them.   They had assigned only one nursing aide on day shift and one on night shift to care for her; they kept the same ones for the first couple of weeks so she did not have to try and process new people while she was adapting to the changes.  The aide would also come and get her and take her to the dining room as well as to activities so she did not get stuck in her room.

She was aware of things, so in the room, with nursing, we made an appointment with the facilty hair salon the next week - she liked the idea of a "beauty shop." Surpised me that she did.

I was asked not to come to visit for several weeks. I was not comfortable with that; but did so for the first week.  This of course had me calling once in the daytime and once at night to see how she was doing.  At one point, one day, I was able to be in the nursing office that had a window with one way glass - I could see out but no one could see in. It looked over the activity and dining area and I was able to see my LO without being seen and she was doing well.   So relieved to have seen that; it really helped me keep my mind at ease.

IMPORTANT:  Ask for your LO to be seated at a dining table with others who are at her level of function. At first my LO was seated at a table with others who were far more compromised than she was, and it was a disaster due to behaviors and messes . . . had that changed and my LO began to eat well again.
 

NOTE:  Many NHs or MCs will ask family not to visit for weeks; I am not in favor of that - it smacks too much of abandonment and if I put the shoe on MY foot what would I feel?  Well; I would feel abandoned and without any source of advocacy - my protector - if something was not right.  I was wanting to do what was best for my LO and not what was best for the facility.  It all worked out, so that was good.  No visits first week, but then a few days a week for a couple of hours next week, then normal visits.

It did take me some time to adapt to the changes, but that is part of the process.  When visiting, I often took a small treat.  If my LO got agitated and started to be angry with me for whatever, I would excuse myself to. "use the bathroom," and then simply left after letting the aide know and asked her to check in on my LO and refocus her after I was gone.  It worked well for such times.

Sometimes, once in awhile, we brought a meal from home or from her favorite fast food place and then we ate together in a separate dining room they had for families. 

NOTE:  It is also good to bring a treat for the staff now and then, thanking them is a good thing and helps relationships.  Just find out what can and cannot be brought in due to pandemic concerns/

Later, when my LO became more irritable, I hired a lovely lady I met at church who had worked with the elderly.  She was not expensive.  She went to the MC and introduced herself as a "volunteer," and then said how much she enjoyed my LOs company.  She came in two to three times a week for two to three hours at at time; they talked, went on walks around the facilty with my LO in a wheelchair, looked at magazines, did a few small creative items, the woman was very creative, she even brought flowers from her garden, and my LO said the woman was her, "best friend." Great!!

Step by step, little by little, you will find what works best and you will also have a chance to recoup your own energy.

I send you biggest, best, warmest wishes for a very good outcome, please do keep us posted, we will be thinking of you and Joe C. while you are making such transitions.

J.

June45

It seems that I am in good company of those currently trying to decide to place LO in MC and everything that decision involves.  My daughter who lives in another country was finally able to visit us in person after almost 2 full years of not seeing her.  She is in healthcare and many of her clients have dementia so she is well aware of the challenges.  A few days after arriving here, she told me that she would fully support my decision to place her dad.  She has been doing night duty every night since being here...my husband is up 1 - 3 times every night. We checked out 3 MCs while here and she has been helpful from a healthcare worker's point of view and was able to ask questions that I didn't think about.   She leaves next Tuesday after being here 3 weeks and I will be back on night duty, 24/7 care, which will probably do me in.

Joe C.

Beachfan, Yes, I would say the Community Fee & Move In Fee are the same thing by different names. In my area MC cost are high, $8,000 - $12,000 per month and one the community fee $5,000 - $7,500 depending on the facility and level of care the resident requires. Fortunately DW & I were both savers during our working careers so we can afford this care.

The one thing I learned is that not all MCs are equal on when they will require residents to move out as the disease progresses. Some facilities will require resident to move out once they can no longer feed themself, need 2 person assist walking or require meds to be crushed & mix with food. Other facilities will care for residents in much more state of decline. I never want to have to move DW a second time so I choose a facility that will provides the most care as her functioning continues to declines but these facilities are at the higher end of the price range.

I have met a fellow traveler on this journey who moved his wife into a MCF as a permanent placement & paid a $6,000 community. The placement did not workout and he lost the entire $6000 fee. That is why I will start with a respite stay to make sure thing are working before I pay this fee.