Discouraged. Just a vent.

M1

For a brief interval I thought we had made progress, I was able to visit twice a week, taking lunch, and we would have good visits lasting 60-90 minutes.  She wasn't upset when I had to leave.  But three weeks ago my 3 yo granddaughter gave me a bad cold from daycare (not covid), and I've been sick since then--just now getting back to normal.  I missed three visits, and seems like we're back to square one.  Last Friday, Tuesday, and then again today she's furious with me, why can't she be with me, there's nothing wrong with her, no doctor has seen her, no one tells her what's going on.  Today she threw lunch at me so I left after 20 minutes.  Wish I knew how to get things reset, very discouraging.  And of course there's no reasoning with her.  We've tried redirection, telling her the truth, telling her fiblets, nothing seems to work.  I can't take her off site, even downstairs to the dining room, or anything.   She still has all her belongings packed in the hall--staff told me today they are going to try unpacking for her next week and remove any potential packing items to see if that's being a trigger, but I doubt it.  I'm back to feeling like I just have to stay away.  So sad.

Mint

M1 I’m so very sorry.

jfkoc

It must be horrible sad.

All you can do is what is in her best interest which leaves you sort of out of the picture for now and filled with grief. I am so very sorry.

Is she angry all the time or are you the sole target? Knowing she is not furious all of the time might make you feel 1% better.

Dio

M1, so sorry you're going through this. Let's hope this phase will pass soon and that your DW will "forget" about whatever it is that's agitating her at the moment.

Joydean

M1 I’m so sorry was truly hoping the routine that was working would last. There are no words of comfort that can be offered . Will she still see the children? I hope when they unpack her belongings they will find some other trigger beside you.

toolbeltexpert

M1 you have been on my mind the last 2 days and I was hoping everything was going well. I am so sorry, I keep my dw stuff locked up now so she won't pack it every day. Now I need to find different lock as my dw roomy has figured out how to open my wife's. I got there this afternoon just in time to help them avoid a major scene, the roomy had my dw sweater on and dw knew it was hers, the staff got the roomy and I got dw. 5 minutes later everyone's happy again.

Does your wife calm down quickly after you leave? Keep us posted about how it goes with the stuff. Maybe that's a part of the trigger? I hate that this has returned with such a bad reaction.

ImMaggieMae

M1, I’m so sorry. Maybe once the staff unpacks her belongings she will settle in and not direct her anger at you. Maybe you should just keep visiting. She was doing okay with your visits before you got sick, right? Get back into the routine of seeing her and hope that works.

Jeff86

How very discouraging, M1.  You were extraordinarily patient (forced to be, of course) the first go-round, and now it must feel like you’re back to square one.  I hope for both you and your partner that things will shift again so that visits are not only possible but enjoyable again.

TheMonck

M1,thank you for posting.Im sorry that you are facing such a difficult situation.i remember early on being told that dementia patients all act different.Im so discourged how my wife is acting but what you are facing is so much worse.I pray that it will get better for you.

TheMonck

I havent posted or read any posts for awhile.I'm discourged and just been keeping it in.My DW has now been in a memory home for 5 months and im watching her die little by little.So hard.I see so many shortcomings in the care and dont know what to do.Just today i visited at lunch and watched her struggle to eat,showing a lack of interest to eat.What can i do?It breaks my heart.

Ed1937

OMG, M1! I'm so sorry to hear that. We all thought you were not going to have those problems anymore. I wish there was some way we could help, but there's not. Please keep us updated.

Jo C.

Oh M; I am so very, very sorry.  I had been thinking of you and imagined all going well with the visits.  How disappointing and despairing.

When you are not present, how does the staff describe her behavior?  Does she continue to attend activities and join in as she had finally been doing?

Wonder:  Your being gone for awhile, did that upset her established routine which triggered her return to the prior behaviors?  If so, perhaps that will correct itself

Wonder:  Could something have happened or be continuing to happen in the facility that upsets her making her irritable, and when you arrive does that cause you to become the target focus for those feelings that may have occurred earlier?  Perhaps a dislike of another resident, a staff member, a change in something in her setting, being restricted from something she wants to do but is not being permitted, any changes to her usual established routine etc.?

Wonder:  Does she have one of those "silent" UTIs?

Wonder:  Does she need to have a dementia specialist adjust her medication?

Wonder:  If the staff takes her packed items when she is not present and stores them elsewhere or has locks on a closet in her room, would that remove a possible trigger point?

I'm sure you have already covered all the "wonder-ings."

My heart goes out to you; may this be a temporary, short lived state of affairs soon extinguished.  A big hug being sent your way on wings of hope.

J.

White Crane

M1, I am so sorry!  My heart hurts for you.  Things seemed to be going better and now this.  Maybe it will help when they unpack her things.  I hope so.  I know this is so hard for you and am holding you close in prayer.

Brenda

Hoot619

M1, I know what you are going thru and it hurts. No matter what you try just isn't working. It makes us feel helpless or even hopeless at times. I'll have you and yours in my prayers and hope that things change for the better.

Gig Harbor

M1 my friend’s wife is doing the same thing except that she is home. She no longer recognizes it as being her home and has packed and bagged all of her belongings and keeps asking him to take her home. He is at his wits end because nothing is working. I hope your wife is able to look at MC as her home as soon as possible.

JoseyWales

M1, I'm so sorry she's back to being upset by your visits. It's truly a terrible disease, that takes away the understanding that loved ones are trying to help. 

My thoughts and prayers are with you.

Jo C.

Thinking of you today, M1.

J.

Joydean

Hopefully your visit will go better today!

M1

Thanks you guys.  Today was no different, although at least she didn't throw lunch at me.

The staff unpacked her room yesterday and took away all potential packing materials--she reportedly cried because she liked it.  Couldn't tell me about it today though, didn't know why/how it had happened.  I just told her I liked seeing the pictures on the walls.

Didn't make much difference in our interaction.  She just fixates on wanting to come home with me and won't let go of it, won't be distracted or diverted.  Won't relax and just enjoy being together.  Talked about suicide today, as well as "going to Texas," that's been a constant theme.

I will report the suicide comments to the staff.  I don't know what to do otherwise.

toolbeltexpert

M1 I too had a bout a week or two ago where my dw talked about harming herself and did report it, it was right around the time her meds had been lowered, we ended up doing a little increase at night and so far that has helped. I hate this is happing and hope they can find something that will help.

Stewart

Hoot619

M 1 and Toolbelt, It makes me feel real bad that your Loved Ones aren't adjusting to their MC. I'll have you both in my prayers. I know you both feel so darn helpless that you can't change their outlook on things. Hoot

jfkoc

Heart breaking to have to make the "less bad choice". 

Things will change but no one can know how long before they do. 

It is just too hard sometimes.

M1

Friends went to visit today and called me to say they just had a wonderful, near 2-hour visit.  And staff assures me that she's happy and interacting when I'm not there.  Which is generally good news.  The VERY hard part is that it all clearly indicates that I'm the emotional trigger,  and she's probably better off if I just don't go visit and remind her of what she has lost.  I can take that, I can do it for her if it's the best thing.  I just don't see a way to break the pattern in the short term.  Hardest thing ever, but i can do it if I have to.

Ed1937

M1, I am really sorry. That has to be so very hard for you. I think about you all the time, and I just don't know how you can keep your spirits up. Is there anything that interested you pre dementia that you gave up? If so, maybe you could try to get back into it to see what happens.

DJnAZ

M1...sorry your wife's adjustment to MC is filled with complications and stress. I'm in a similar situation with my wife. She was admitted to the facility 5 months ago and refuses to unpack her things and settle in to her new home.

The staff tell me she is slowly adjusting and spends much of the day just wandering around the building. Because she has global aphasia she is unable to converse, talk to or respond to anyone. When she sees me, however, her calm demeanor changes. Initially she smiles and motions for me to follow her to her room. Once there she begins to gather her things as if she is leaving. This has been the routine every time I visit. I am her trigger to leave.

I see her every 4-5 days and my visits are usually about 30 minutes. As long as I'm there she will continue to gather her things as if she will be leaving. I try to distract her, take her out of her room and walk around or go to an outside courtyard. When I'm ready to leave she realizes what is going on and has to be restrained by staff. Otherwise she will follow me to the exit.

As much as I want to see her and be with her, each visit is the same. I'm told she calms down not long after I leave, which is good. In fact she probably calms down quicker than I do. For me the experience is depressing.

M1

DJ I sympathize so much, and it helps to know I'm not the only one--hope that helps you, too.  The staff want me to try coming more, not less--which is not easy since it's a 45-min drive each way.  But I'm going to give it a go.  Today we're going to try something different, too--they are going to let me visit with her outside of the locked MC unit to see if that makes any difference.  Staff available to help get her back in, of course.  

I frankly don't think it's going to make any difference--as with you, I think she just sees me and knows she wants to be with me and that's it,  nothing else penetrates.  It is indeed very depressing.  I'm sure the aphasia is difficult, but it's also difficult to hear accusations thrown at me every time I'm there.  

I'm also going to take some old pictures today for something to sort through, see if i can get her interested in those.  i have boxes and boxes--among her many other talents she was an excellent photographer in her day, and pre-digital cameras I have tons of old prints and negatives we can play with.

I'll let you know later how it goes.  But thanks for posting, and my heart goes out to you.  Glad to know your wife settles down when you leave, that's the same here apparently.

Beachfan

 I have followed this thread for a week, M1, hoping for a turnaround. It seems as though your situation is not about to change in the near future.  I am so sorry. You have waited so long and worked so hard to make this placement ideal for both of you. It is encouraging that the staff are trying to work with you to help you right the situation.

 I can understand your misgivings about traveling 45 minutes one way only to find disappointment at the end. My DH is 38 miles away, one hour each way, given traffic, mountains, weather. I, too, find disappointment upon arrival; no recognition, no reaction. no interaction, no response. Sometimes I wonder which situation is worse; equally discouraging and sad, I suppose.  I hope things turn around again, for you and your DW, and stay stable going forward.  Best of luck.  

Jo C.

Dear M; I hope that with a little time as planned by the staff that your partner will adjust to your being part of her usual days.   You are very creative in bringing the negatives and photos; so hope that gives a good result.

I will be thinking of you and looking toward that all soon turns around to better results and ease of your heartache.   You are a good and very loving person who leaves no stone unturned in trying to make things as best as can be and are to be commended for your faithfulness and  loving blessings that you bring to your partner even if she cannot process them at this time. 

J.

M1

The support here helps so much. It did go some better today- we met outside the locked MC unit for the first time, and looking at old pictures took up the whole hour-which was good. She did continue to ask whether we were ever going to be able to live together, but it was easier to get her off of it. She loved the pictures, though it was astounding how much she didn’t recognize, including her favorite niece, the house she built for herself in 1986, a lot of old pets. But it did help pass the time, so we’ll do it again. And she went back to MC with no resistance when I left, the activities director was waiting for us at the door.

Nothing to do but keep trying.

Joydean

M1, I call that a win! No anger, she enjoyed the pictures, didn’t get upset when you left! That’s so much better than than what you’ve been getting. I guess you could look at this like dating, slow and easy. Okay I’m corny, so hope you laughed or smiled. Keep doing what works.

toolbeltexpert

Totally agree that's a win and keep trying. 

Stewart