back to square one---or less

M1

At the urging of the activities director I made another attempt to take lunch today, but it was even worse than Friday and I left after about ten minutes.  Clearly she just does not tolerate my presence, it's too intense, all she wants is to get out of there and is upset with me for not making it happen.  I was so hopeful after the one good visit last week, but it clearly was a one-off.

Hard not to be discouraged.  Clearly the best thing is going to be for me to just stay away.  Even the activities director admitted that today.  Four months since she left home this week.

jfkoc

A tremendous loss for you to live with. No words of comfort from me except to say that we here have suffered great losses. We know, we understand and we care....

Ed1937

How long can this go on? I have no words.

Quilting brings calm

M1-  I’m so sorry.  Giving up visiting is yet another sacrifice you have to make to keep her safe… and to keep you safe.  Yet another example of how you have  to be the one to think logically because she can’t.  Hopefully your absence will allow her to restart settling  in and to do the activities that keep her occupied.  

I know you wanted to be able to visit while she still remembered and recognized you.   I’m sorry. 

T. Slothrop

M1,

Can you tell if she is happy when you’re not there?

Jo C.

Oh gosh; what a monumental disappointment; I am sorry that happened.  One thing that has struck me about your partner, is wondering if she has damage to the frontotemporal lobes of the brain.  That would explain some of her behaviors prior to her care admission as well as some of the behaviors that exist now.  Even though not FTD, in some cases as in Alz's, damage can be done to those structures.

There does not have to be hyperorality, or swallow issues or symptoms with movement; but especially the behavioral issues and fixations can be signifcant.  Her memory though compromised in some ways is still pretty high considering . . . that is also why I wonder about the areas of damage.

It sadly seems you are indeed a trigger for her acting out.  So undeserved and heartbreaking.  Your assessment for current plan is appropriate under the circumstances.  If your visits are causing her only upset, frustration and angerly acting out, and are painful for you, then nothing is to be gained by the visits at this point in time except to assess her physical well-being, but she has been doing fine with that.

It appears that not visiting again for awhile and getting reports and even photos, or if possible, videos of her in activities, etc. may be what serves best at this point.

How is her routine behavior now when you have not been visiting?  Is she getting some socialization, engaging in some activity whether planned or on her own terms?  She may not be happy which in dementia is not always able to be, but does she appear reasonably content?  If problems have surfaced and are persistent, then of course; rule out that UTI possibility and also assessment by whatever dementia specialist makes visits to the facility to assess possibility for medication adjustment.  Those seems to be the options whether helpful or not.  Other than that, there is only wait and see as difficult as that is.  

Hope that staff has managed to find relief from that screaming lady; that is horrible for the other residents.  I remember when the staff was going to move your partner to a different unit as she is so high functioning; do you know what happened with that?  If that unit is locked so she cannot elope, I wonder if she would be more content with that group of residents more than she is right now if she is still suitable for such a transfer. Just a thought.

 By the way, I loved the photo of your flowers and barn with her artwork above the barn entrance.  Really a good photo and all looked so peaceful.

How I wish this was different or that I had words that would be helpful; I just know that I have best wishes and high hopes that this all simmers down soon to enable you to make visits that are so longed for.

J.

DJnAZ

I have a similar situation, M1. This is week 7 my wife has been in MC and each time I have gone to see her has been a disaster. The moment she sees me she goes to her room, gathers up her things (that she refuses to unpack) and says, "...let's go!". The most recent visit it took several staff members to physically restrain her when I left. And as I went out the door I could hear her calling my name. Heartbreaking!

I spoke to the director of nursing and she suggested before I visit to call at least 2 hours ahead and they will give her something to try to keep her calm. I planned to see her last week but she tested positive for covid, along with others, so I have stayed away. I want to see her and take some of her things and will try to go in a few days.

I know this is terribly difficult for her. The staff has told me she seems to be adjusting and more accepting of her new world, but I know for sure she wants to leave. As much as it hurts to leave her there, she is safe and secure in MC. It helps me to know she is where she needs to be.

M1

I don't know whether she's okay when I'm not there, or not.  For a while she seemed to be adjusting somewhat, but apparently she is now pretty much refusing group activities.  But she never was one for those kinds of things, so it's hard to know.  The only thing she likes doing is helping the staff---and now there's another resident who also wants to do that, so there's competition and she doesn't like it.

Jo, we don't think she has FTD.  There are no other behaviors or characteristics that suggest it.

I'm just at a loss.  She's supposed to be getting a one-on-one companion in the next week or so, for a couple of days a week, we'll see whether that does anything.  Hard not to second-guess myself, but also pretty much impossible to think of other alternatives.

DJ, it helps to know I'm not the only one.  I hope it does for you, too.  I'm sorry about the covid, I'm still waiting for that shoe to drop.  Although staff is still masked in the facility, people have pretty much shrugged their shoulders here.  And transmission rates reflect that--test positivity rate was above 25% last week.  Of course most are just not bothering to test.  Matter of time.

ImMaggieMae

M1, this whole thing has to be heartbreaking for you. Is there a medication they could give her to calm some of her agitation? Is that woman who was constantly yelling moved to another area? It sounded like she was starting to settle in before that started. Who wouldn’t be stressed with that constant noise.

Gig Harbor

M1 I am sorry that your wife still has not adjusted. That is heartbreaking for you. My husband has been glad to see me but he doesn’t mind when I leave. I just make sure he is with a buddy. He is fighting the staff about shaving, brushing his teeth and changing clothes. I have decided that my visits there will involve having him put on all clean clothes and do his teeth and shave. He has forgotten all about his long walks and definitely has physically gone downhill in three weeks. I know that if I had kept him home he would be stronger and dressed appropriately but not any happier. It is so hard to not second guess choices. I hope your wife’s memory starts to fail just a little more so she will forget being home.

Jeff86

M1, I am so sorry.  You had reason to be hopeful, and those hopes have been dashed.  

I think you’re left with two unsatisfactory options, medication and patience.  My heart goes out to you.

toolbeltexpert

M1 that is so hard to get one step forward and 2 back, I wished it wasn't this way for you, cause I know the emptiness. Praying for tomorrow to be better for you both.

Nowhere

Your story was my story thru almost a year following placement. I was beside myself with grief, worry, and shame as I knew I was letting him down by not visiting, yet when I did he’d rage demanding nothing was wrong with him and he’d be exit seeking after I left. He’d lost three siblings and his father to Alzheimer’s and had asked if he followed in their path that I put him in a home, but make certain they treated him well. One day our child said that he didn’t think his dad knew who he was, and I immediately thought I wished he wouldn’t know me, so I could visit him. It was that moment that I developed a plan to visit him incognito. I bought a wig, practiced an accent, bought a name tag for myself that said a variation of  my name and indicated I was a housekeeper/gardener. Along with Covid masking it works! I visit regularly now and have been able to cut his hair, trim his nails, clean his room, change bedding, get clothing into the laundry room, and just plain stop in with a smoothie because he’s my favorite “resident”. Happily there are times I can even hug him hello and goodbye.

The staff knows and supports me in my role. I’m rather quiet and not one to be comfortable “acting” but out of necessity it comes easy and natural now. I’m so grateful to be able to be with him in this capacity. BTW He has a female roommate who he initially called by my name. She calls him by her ex husbands first name. He has since forgotten my name and even that he has a roommate when she is out of his sight. However, when they see each other there is something that draws them together for companionship. They are a great comfort to one another. Otherwise, the staff and I suspect he’d be much more anxious and exit seeking. 

Maybe there is a way you could disguise yourself and be with her? IDK But, I feel your pain and hope you can find peace of mind. 

Jo C.

Nowhere, I remember you so well and how creative you have been and turned around a deeply bad situation; you so impress me; what a wonderful, loving, kind person and that your husband's condition permitted him to see only the "new" person.

Still makes me smile.

J.

Nowhere

Thank you, Jo. I hope my story can help others considered “triggers”.

ImMaggieMae

Nowhere, what a wonderful solution and a great way to be involved in his care.

M1

Nowhere, I remember your situation and it has come up before in discussion of my dilemma.  Unfortunately my partner is still too "with it" to fall for that, a disguise would not work.  The unit is too small (and circular) for me to hide somewhere to watch her unobserved.  Cameras she would unplug (she unplugs her TV and clock multiple times a day).  Excuses don't work, redirection doesn't work, nothing seems to "work" except my staying away.

But not going has consequences too.  So far, just minor ones--like their not taking the plastic wrap off her new mattress, not notifying me that the adjustable bed frame didn't fit and needed to be returned.  This week, it was needing to remind them to please get her scheduled for a haircut and perm--this was supposed to be happening on a regular basis, but hadn't since right after admission in mid-April.  But one of these days I can almost guarantee that something bigger is not going to get addressed because I'm not there to oversee it.  Worries me to death.  Not to mention, I just flat miss being able to see her and share anything we could still share.

Wishing for progression or death seems awful, but it's true and it's real.

Joe C.

M1, I truly feel for you. I wish I had some advice or words of wisdom but I do not. Hang in there.

White Crane

M1, this is heartbreaking.  I'm so sorry.

ButterflyWings

(((M1))) this is the most cruel disease. I’m so sorry for you both, but especially for the one who is acutely aware of everything and yet we are so helpless against this monster-  dementia.

The only reason I was able to keep DH home when the hallucinations and delusions drove him to weapon up, is that it wasn’t directed at me - it was protective (he thought intruders were breaking in etc). It still was dangerous as he was starting not to always recognize me but not the direct threat to come after me with a knife that your DP promised. 

Seeing her determination over the last several months, despite a psych stay to regulate those meds, it seems likely her delusion that you were the enemy for not allowing overfeeding the animals...well it likely would have continued, possibly gotten worse, and you would have been in constant danger. No way to keep her safe, or you.

Not having nearly the space and equipment you have, I was able to disappear ALL the knives, bats and garden tools while (luckily) Seroquel shifted DH’s brain to deactivate his worst thinking. Still, it is a daily and nightly struggle dealing with all that his progression brings and the house, small yard, my career and health are casualties for now. So much of our little world is neglected. If pains me, but you can’t just hit the pause button on a 150 acre farm.

If DH had not gutted our resources pre-diagnosis I may have done exactly as you have regarding placement, still. Given the triggers of the farm, all the equipment and vehicles, the animals, and tragically targeting you as the enemy— you really just had no other safe choice. 

I’m so sorry that is how it is right now. None of this was supposed to happen when we found our loves and expected to face the future together, always. I hate this disease. Hoping and praying for some relief for the heartache, for you.