What now!!

blacksparky

Well today’s events knocked me for a loop. My DW became very anxious and kept saying that she wanted to go home. I tried to comfort her and tell her that she was already home. Of course she didn’t agree. She told me she was going to take a walk which she has done occasionally by herself. Never had a problem before. After about 20 minutes I got into car and started to look for her as it was beginning to rain. While searching for her, I received a phone call from our clubhouse ( we live in a 55+ hoa community) saying that she was there and very confused and agitated. When I got there, DW told me that she didn’t love me anymore and didn’t want to go back to our house. Normally when I ask her if she wants a hug, it works, but this time she told me to not touch her. I finally talked her into getting into the car with me because she wanted to go to her mother who lives with her sisters family. I dropped her off there and we came into the sisters house and she told me to leave as she never wanted to see me again. I know it that dam disease but it still tears my heart apart. What now I’m asking. Is it time for MC? Or is this just a stage that she will forget. I told her sister to call me when DW settles down. I was handling this caregiving assignment given to me pretty good up until now. Any advice would be greatly appreciated.

Quilting brings calm

It depends on a couple of things. It’s possible she has a UTI. Confusion and paranoia is part of that infection for people with dementia. If that’s not it, then you will need to see if her attitude continues or becomes repetitive.
If placing her makes her feel safe, that could be the route to go.

jfkoc

A loved one in placement like MC can be very hard on the caregiver so look carefully at the pros and cons.

It would be a good time to get your plan B in place and do check for the UTI.

CindyBum

Good to check for a UTI, yes. Also, this could be the beginning of sundowners for her. I had good luck in moving some of my DWs anti-anxiety meds to late afternoon instead of evening. It has really stopped the sundowners and "I want to go home" from her, for now at least. Others have success with medications to calm their spouses, others haven't.

Telling them they are home, however, rarely works. Some folks have been able to distract with other stories or taking their LO on a ride and bringing them right back home. Neither worked with my DW…so we went the medicine route.

I hope you find a solution that works for you both. I found these behavior super challenging and heartbreaking. Hang in there!

FTDCaregiver1

It’s painful for sure, agitation can be triggered by lots of physiological things, fevers, headaches, UTIs,etc. Also situational, biggies for my DW were confusion, fear and multiple people talking around her. Agree with others in looking for physical issues yet consider developing some redirection techniques to bring her down when she’s agitated and developing/practicing co-escalation approaches as well. Over the years, food/snacks worked well on redirection even into late stage 6. Co-escalation works too but takes time and lots of trial and error. Soooo many times, and just about every day, and multiple times a day. Early on, I’d try to confront or reason, soooo frustrating. Eventually I learned about co-escalation and months/years of practice, got to the point where I’d walk into the room to see her yelling, throwing things, I’d smile, make eye contact, match her voice volume saying stuff like “there you are, I missed you, your so sweet, keeping arms length until she was comfortable with me approaching/touching her, reducing my voice volume to where I wanted her to be. Eventually, over time and lots of practice, got to a point I could bring her down to a whisper and walk slowly around the room until we sat. Initially when she yelled harsh things like “your trying to kill me”” and in public, I was so hurt, but over time, as I learned more about the disease my pain lessened and found I had more energy to focus on identifying sources of her extreme agitation and learning from others on how to use techniques to address them. Your not alone in this journey and fortunately there’s a lot of info out there on dealing with agitation.

blacksparky

Thanks everyone for your great advice. I think I just overreacted because this has never happened before. I have learned from your comments.

SDianeL

maybe it’s time for locks on the doors so she can’t leave by herself. As you know reasoning with her doesn’t work. Redirect or distract. They want to go home because they are anxious. Home is not a place it’s a feeling. Ditto on asking her doctor for medication to calm her. If you can’t keep her safe and calm perhaps it’s time for memory care. If you’re asking it’s time to have a plan B. You’re doing a great job. It’s the disease and no way to know how long each behavior will last or whether it will stop or get worse.

Biggles

Hugs to you, it’s so horrible and hurts so much when you are rejected and you still want to be their greatest partner, friend and companion even though you know it’s the disease talking. Like you I thought I was doing ok with this caregiver stuff for my DH and then he asked one day who I was, the first time it guttered me but I too am learning that these things seem to come and go. We keep smiling, keep trying and go on, we love them so. It’s cruel take care.

Lills

My DH also wanted to go 'home' but this stage was very, very short-lived. Hope that helps!

eaglemom

I don't believe that you've over reacted blacksparky. This is someone whom you love and want to protect who is changing and you can't stop it. It hurts.

Any type of different behavior is concerning. As has been mentioned the first thought goes to a UTI. No matter how long or short you've been on this journey, each day is different than the previous one.

Do let us know what is happening and what you've found out.

eagle

mrsdee13

Blacksparky, I am so sorry for what you're going through. I am not at that stage yet, but I do fear it. I believe we all do the best we can, and it's so unpredictable. I pray you come up with a solution. We're all keeping you in our hearts. Hang in there

conrey

this is all new to me. Just beginning this journey. DH diagnosed 8 months ago. He’s still in denial, I’m beginning to look into support groups

BPS

Start looking into memory care facilities so if you have to go that way you will be prepared. Even if you get on a waiting list you can be moved down the list if the time is not right when an opening comes up. I started looking even though I thought there was no rush. Then she had a stroke and I was glad I had some idea about what to expect from memory care.

blacksparky

https://alzconnected.org/discussion/comment/235743#Comment_235743

At this point MC is not an option due to the high cost. We live in California so I will need to apply for Medi-Cal. My understanding is the person applying needs to fail on 2 of the 5 ADL’s. My DW is physically able to complete all 5 ADL’s. Her IADL’s , she fails on all of them.

sandwichone123

https://alzconnected.org/discussion/comment/235745#Comment_235745

Even though moving right now is not an option, this is a great, low-pressure time to scout out the options before you have to be choosing "for real." That way, if it comes to pass that you need to start considering options you'll have a better idea of what to expect—even if you never seriously visit any of the places you did your initial scouting.

AlzWife2023

https://alzconnected.org/discussion/comment/235745#Comment_235745

Think hard about those ADLs. Do you have to help her get up from the sofa, hold her hand while she gets in & out of the car? Do you have to cue her when eating? The first major ADL my DH failed was showering. Not only would he just not shower for weeks, he would not know how to fully wash when I got him in the shower. You don’t know until you observe what they’re actually doing in there.

Carl46

I don't know about MediCal, but failing 2/5 ADLs is usually for physical impairments. For mental impairments, a person can qualify for my LTC insurance if they require constant supervision.