Time to just stop, not going to change

M1

Tried to visit again today.  No luck, even with friends there, my presence clearly just makes her unhappy.  She was pouting, telling us she was going to Texas because "there's no reason to stay"--looking at me.  Wanted the others to leave so she could lay into me.  Clearly still believes I have left her for someone else.  I cut it off of course.  The activities director assures me she forgets it as soon as I leave and isn't unhappy all the time.  So the only recourse is for me to just stay away.

It's not going to change in the next few weeks, that I'm sure of.  So farewell, my lovely--I will have to love you and care for you from a distance.  Awful, awful, but fully predictable,  knowing her underlying personality I shouldn't have expected anything else.

David J

M1 I am so sorry. Our lives change when our LO goes into MCF, thats for sure. I try to be cognizant of the present situation, not the past. Did my wife and I enjoy our life together? Absolutely!  Will that continue?  Absolutely not. Is she well cared for, clean, well fed, loved?  Yes. Can I live just as the affected spouse? No. I have to live my life and cate for my wife with help of the MCF staff.

Ed1937

M1, I was hoping for a better outcome. I'm sorry. To see a post from you saying things went well would have made my day. It's been waaaaay too long for you. You both deserve better than this.

Jeff86

I am so sorry, M1, that your worst fears about your partner’s adjustment to MCF are playing themselves out in this fashion.  AD is a heartbreak under any circumstances but ever so much harder when the caregiver becomes a trigger.  

Hoping against experience that there’s an improvement soon.  It’s hard to want to hope for disease progression to ease the transition.   

Jo C.

Dear M1, I was thinking of you today and hoping all would go well and be much lighter with your visit.  I am deeply sorry; I know that your plan to give some space is what is needed at this point and I can understand what this is doing to your heart.

You are a kind and loving partner and will be doing what is necessary as a distant advocate until the dynamics clear to enable you to step back in person.

I send a soft hug down the electronic tether,

J.

toolbeltexpert

M1 I am so sorry,  I know this is so hard and I think of you often.

Joydean

M1, I was sooo hoping for the both of you! Wish there were some words to say but there honestly aren’t any. As you stated you know her so well, she is cared for and not always unhappy.  Only you will know when you can see her. Have you considered writing her letters? Not text messages but real paper and pen letters? She could read them over and over. I hope that doesn’t sound silly but I was just trying to think outside the box. 

Prayers for you both. 

JoseyWales

M1, my heart breaks for you, and your wife. As if this disease wasn't cruel enough, it has to play with our spouse's minds and make them believe things that just aren't true. 

Have I ever mentioned before how much I HATE dementia?

ButterflyWings

Oh (((M1)))- It is all so unfair. But otherwise it was so unmanageable, unsafe and was only going to get worse from there. You have done the most amazing work to ensure your LOs specific needs are addressed, despite the layers of stress and pain it brings to you. What a terrible thing for us to be between a rock and a hard place, one way or another with this disease. I am so sorry this is how she feels right now. Praying the situation changes for the better...and soon. I love the idea of a love letter. Even if you don't send it.

Gig Harbor

Do you think you could wrap up some little gifts and write her cards and have the staff give her one a day. Ask them to make a big fuss over how much you must love her and how lucky she is to get such nice things. They could then ask her if she would like you to visit.

Buggsroo

M1,

I am so sorry, this is heartbreaking. This disease is such a pile of sh--. I hate you are so hurt and you know the accusations are groundless. My heart goes out to you. I am relieved that she is doing well, but this must be so painful. 

Vitruvius

M1 you have my deepest sympathy. From what I can see from your posts, you have done what had to be done to provide the safest, most comfortable situation for your LO.  Like everyone else here I hope it gets better over time.

Not to minimize the suffering our LOs might feel, but the pain that dementia wreaks on the caregiver seems just as bad and so unrelenting. 

Gig Harbor

Here is another idea. Next time you visit wear an ankle walking boot and use crutches. Tell her you will be having surgery and will have to go to rehab. Say that you can get someone to bring you to see her but that you wouldn’t be able to care for her or yourself at home.

Scooterr

M1, my goodness I feel for you my friend. My prayers go out to you and wife. Dementia is truly horrible, and you are being run through the gauntlet. Please try to take care of yourself during this time. I know that's easier said than done, stay strong.

Ed1937

Gig Harbor wrote:

Here is another idea. Next time you visit wear an ankle walking boot and use crutches. Tell her you will be having surgery and will have to go to rehab. Say that you can get someone to bring you to see her but that you wouldn’t be able to care for her or yourself at home.

I love that. And I'll remember it. Thanks!

 

Joe C.

M1, I am sorry to hear of your continued struggles on placement journey. I can’t imagine how I would have dealt with similar circumstances. Hang in there & I hope things improve.

ImMaggieMae

M1, I’m sorry this is going so badly right now. But if there’s one thing I’ve learned about this disease, it’s that it changes, sometimes quickly and sometimes not so fast. Praying that with time some of her crazy thoughts will be forgotten and a new normal will prevail. There are a lot of ideas from people here that might be worth a try. It’s awful when you do everything you can and things don’t go as planned.

Stuck in the middle

It seems that placement goes one of three ways:

1.  The person placed thinks they are being left for another lover.

2.  The person placed thinks they are being punished for misconduct.

3.  The person placed doesn't know who you are and fits right in.

In all cases, the caretaker has a broken heart.

So sorry, M1.  You didn't do anything to deserve any of this misery.

M1

Thanks Stuck.  It just is what it is, for now.  And I do think there is some element of her thinking she's done something wrong, and I know she thinks I am doing something wrong, that I have done this to her on purpose.  She still knows me enough to know that she wants to be with me, and that she doesn't want it to be there.  I offered Tuesday to come be with her every day, but that's not what she wants, she said no like a child would.

She told the staff today that they were in Texas and that she was ready to go home, it was okay for her to be there for a few days but no more than that.  She told them she hasn't talked to me in months (and it was just 48 hours ago).

I think I just have to stay away.  I worry so about the possibility of neglect in that scenario.  Just like they didn't test her for covid until I insisted.  They didn't even take the plastic off her new mattress until I saw it and insisted.  What else am I gonna miss?  There's going to be something important, and meanwhile she's still living in a packed-up, uncomfortable room with everything stacked by the door.  Coming up on ten weeks and she won't let anyone put things away, put pictures on the walls, anything.

Gig I don't think she'd fall for the boot/crutches thing.  She and I have been through too many real orthopedic surgeries together for that one to fly.  And it's my presence that upsets her.

I may try writing, I had thought about that before.  Have to think about it.

Days I am busy I do okay.  Right now the weekend stretches in front of me very bleak and lonely.

Jo C.

M1; you are quite a distance away from your Partner's care facility, and being at a distance in a rural setting, it limited your access to more choices of care settings as I recall.

I wanted to ask:  Are you feeling uncomfortable with the care at the present facility?  I get that feeling from your writing, and it sounds as thought this concern may well be appropriate for what you have been observing when you have visited.

If you are not comfortable with what is there or actually not there, this may be contributing to some of the discomfort you have been feeling.  I wonder if you feel if the staff has put adequate interventions into place to assist your partner; do you feel they have the necessary expertise to deal with your LO's dementia challenges?

Has the facility sent you a notice of holding a Multidisciplinary Care Conference as yet?  If not, I would suggest your requesting a Multidisciplinary Care Conference .  This should be attended by the DON, the Nurse Supervisor of your Partner's Unit, the Social Worker, the Activities Director, Dietary, P.T., one of your LOs care aides and anyone else pertinent to care at the meeting.  They could present their present plan of care and any identified ongoing issues; you can present your own concerns to be discussed. Of special concern would be their skills at dealing with your LOs behaviors and issues being present and consistent on all three shifts.  All together, the Plan of Care can be adjusted to address needs and you can get a feeling for their ability to meet the challenges.  It would give you a full feeling for the care approach and may be helpful in assessing what is actually happening or not happening.

Personally, I have found such meetings very helpful on several levels.

Just an idea; and your Partner should not be at the meeting, nor should she see you are even at the facility until the meeting is over IF you wish to visit her and it may be that it is not yet a positive to do so.  If after the meeting you feel an improvement, that would be great; if you do not feel confident, then that is something to think about for the future.

Once again, I am so sorry and am sending the best to you and so wish there was something I could do to help.

J.

harshedbuzz

M1-

I am heartbroken for you and your dear wife.

Is there some way you could observe her and see her at a time and activity where she is settled and perhaps even enjoying herself? A ground floor window or a one-way mirror that would allow you to watch her without upsetting her for now?

My dad thought my mom had a lover and was divorcing him. Her protests only ratcheted up his anger and distrust, but if I went in and spoke of her undying love explaining that once she'd met the most handsome, smart, clever, entertaining man in the world, why would she stray? I laid it on thickly with a trowel despite our less-then- comfortable relationship. A smile would come over his face and he would talk about their early years retelling various stories I's heard a million times and was happy to hear again. 

Another thought came to mind. There was a woman here years ago-- perhaps one of the long-timers will recall the details-- who disguised herself to visit her husband when he refused to see her otherwise. I don't know if your DW is at that point-- facial recognition can be all over the place depending on progression-- but it might be an idea for the future. 

HB

M1

Jo, I am going to ask for a care conference next week.  They are starting a new support group (for the whole facility which includes AL as well as MC) and the first meeting is next Wednesday--I'm going to go, and will ask about a care conference then.  Unfortunately there are no windows or way to observe without being seen--and she wouldn't fall for a disguise at this point.  We talked about cameras, but are pretty sure she'd unplug them.  

I appreciate the ideas though.  I'm still working on whether a hired companion would help--working the art angle is the difficult part, and most who responded to my brief ad wanted more than just a few hours a week.  Since she doesn't need ADL assistance at this point, it doesn't quite feel like the right time.  More of the college-level art students will be around in the fall, so that may be the time to bring it up again.  

I had a favorite fortune cookie taped to my office computer for a long time:  Nature, time, and patience are the three great physicians.  It's applicable here and I keep trying to remind myself of it.

Jo C.

Hello again M; the Multidisciplinary Care Conferences, (MCCs), are mandated in many states and are also mandated by federal law for any facility that is licensed under Medicare.  We know that Medicare does not pay for custodial care, but the facility is in all probability licensed that way anyway.

In our state a MCC must be held within a certain amount of weeks after admission and then again at defined intervals throughout the patient stay. It may be Medicare requires some time frames, but I am not certain.

I would like to suggest that you ask for the MCC by yourself, perhaps even by phone outside the group setting. Reason for this, once you ask for it in a group setting, it is likely many of the group family members may decide to chime in and demand the same for themselves at the same time which may muddle the dynamics with delays and stress for the staff.

The "Support Group" the facility is starting may or may ot be in place of or designated as a Family Council group which by law the facility MUST provide if even one family member requests it.  In such a Family Council, it take only two people to meet together and it can be as many as wish to be there.  It is against the law for  facility to deny such a Council.  The facility must also provide a place for the Family Council to meet without staff being present.  This Council is not a gripe session, it is supportive and also assists in identifying issues that need to be addressed or items to improve and can make a good relationship with the administration.  It is also very supportive. I would hope that the facility treats their Support Group as not intended to side track any Family Council being formed.

Here is a very good link regarding Family Councils in how to form them, their purpose and so much more.  It is good reading to inform oneself:

http://www.canhr.org/familycouncils/

It is terrific that you are going to be at the new group, that is great and will begin a new way to look at and address matters.  So hope it is well attended.

J.

caberr

I am so sorry.  I don't know what to say.  Have no advice.  I know I will be going through this as well if/when he gets placed thinking I've left him for another man.  DH hung on to me last night saying he wanted to stay with me. It was heartbreaking. I hope eventually you will be able to see her and she will be happy to see you.

Lynne D

M1,

I am so sorry for what you are both going through.

You mentioned that she is living in a room with boxes and belongings unpacked. That would be an unsettling situation for anyone. Perhaps (if she ever leaves her room) some things can be unpacked and arranged to create a more home-like and comforting environment. If you secure a personal caregiver, perhaps, after trust is built, that is something they could do together.

One never knows what little things may help alleviate a problem.

M1

Thanks Lynne, I know, i feel awful about it.   But it's her doing--they've tried a couple of times, and she keeps bagging/packing things up, saying she's leaving in a day or two.   I've let her have a television, and even that she unplugs several times a day--so far they are putting up with it, though I've offered to have it removed if it gets to be too much of a problem.  I don't know what to do about all of it except put up with it for now.  yes it would drive me crazy and make me feel unsettled too.  I am going to ask for a care conference when i go to the new support group meeting on Wednesday evening, they've had two months to get to know her now, maybe in a care conference we can brainstorm a bit.  But it's quite the dilemma.  I had it all fixed before she moved in, and she promptly dismantled it and won't let anyone put it back.

Ed1937

M1, just a thought. Our kids and I were thinking about bringing a TV up for my wife. But I'm wondering if that's really a good idea. Without one, if she wants to see TV, she'll have to go to a nearby community room where others will probably be watching TV. Then she'll be out of her room more, and maybe meet some new people. You know your wife. I don't. Even if she's not very social, she still needs people in her life.

jfkoc

I have a good freiend who's father, a retired Dr, was placed and very restless until the staff put him to "work". He helped with checking on patients, getting them for meals,  putting together in-house activities, making stuff for the bulletin board etc. My friend believes that they had him 1/2 way convinced that he was staff. 

Is there any room outside where your wife can garden? Maybe a pot of tomatoes that need her green thumb? Can you get away with bringing with a stack of old records (paper) that need sorting with a request of "help, I do not know how to do this right, would you mind".

Just thinking out side the box...busy might help. Everyone likes to feel needed.

Addded: print and cut out all the old photos you can find and have her put them in a scrap book...could do the same with recipies

M1

That's what she likes the most jfkoc, is helping the staff=she assists with setting tables, bussing tables, laundry, and yes, there is a courtyard where she can garden a little bit.  The TV is negotiable--but so far apparently not a problem.  

One of the issues is that there are apparently not many people there other than staff who can interact with her--she's the most functional resident, from what I can tell.  So there are not friends to be made, at the moment.  They do watch some tv and movies together--the thing she likes best is funniest home videos, that's the only thing she'll be front and center for, apparently.

All of it is a work in progress.  I miss her so.

White Crane

M1, it is heartbreaking that you and she are going through this.  You have been a loving and attentive caregiver to her and I know it hurts right now.  I don't have any ideas that might help but am sending many prayers for both of you.  Hugs.

Brenda

toolbeltexpert

M1 I know how hard this has been and I think of you both often. Your dw's activity is a win though. Being able to have that sense of worth in any way is priceless. I am not good at helping my dw, When I get involved she usually stops whatever she is doing.  She does several loads of laundry a day, I contribute by adding stuff to wash. I am thinking of getting towels out and putting them in the dryer so she can have an activity she enjoys.