Wants to go home - won't be redirected

Korky777

Dad is in an SNF after a stroke last November broke his hip, weakened his right side, and affected his cognition. I had hoped he could recover enough to come home, but he refused to do PT or OT after a couple of months, and his cognition has continued to decline (he usually thinks he's still in college or the army). He's in a wheelchair and can't stand, transfer, or walk, and needs assistance with all ADLs. He desperately wants to leave the facility and go home. I've tried redirection/distraction and various other things I've read about or seen in videos, but nothing seems to work. He's unable to get into a car, so I can't just take him for a ride. I've tried the empathy route or asking him questions about home in an attempt to redirect, but that seems to make him angry. I've tried therapeutic fibbing (you can go home when you're stronger), but he doesn't believe that he had a stroke or that there's anything physically wrong with him. He even says he will walk the 25 miles home if I won't take him or let him drive a car. He is so sad and it's breaking my heart. Has anyone else dealt with this? Is there anything I can do to ease his distress?

Ed1937

Korky, welcome to the forum. But I wish you had no use for it. 

You might try telling him that if he goes to PT and OT until he can walk good enough to come home, you'll pick him up. That might possibly give him incentive to try, and maybe he won't keep harping about it to you. I'm sorry you're both going through this. I know it's hard.

harshedbuzz

Korky-

I am sorry your visits aren't going better. Under the circumstances, it must feel like a gut-punch to hear the going-home ideation. 

I would discuss this with staff. Is this a recurrent theme through the day along with purposeful steps (like packing) daily? Or is this line-of-thought something you might be triggering with your visits? If it's the latter, perhaps he'd be less agitated if you brought someone with you and/or made the visits in a common area? I found my dad had just enough social acumen to "behave" when he had an audience. 

If you know he has traveled back to college or the army, perhaps your redirective fiblet could focus on that time with a story about not going AWOL or missing finals?

HB

odowd

Korky, I'm sorry this is happening. I don't have great advice, just sharing that I understand your pain.

Mom has been in SNF for 10 months now. The asking to go home is a daily occurrence still. For her it sometimes appears to be motivated by money worries (how is she paying for this? she can't afford to keep staying there), so I remind her--half a dozen times in a 10 minute conversation--that insurance is paying for it. Then she obsesses about knowing a day/date that she can go home, and my brother and I always say it's up to the medical staff to discharge her. This often leads her to complaining that she's never seen any doctors or nurses. Then she often breaks down crying and says, "I don't know what to do."

She also often says she hates being alone (even though she would be alone at home too). Sometimes I remind her of that; that at least there are people around where she is, and she wouldn't even have that at home. And I also tell her that even though I'm not there physically, she's not alone when it comes to what she's going through, that we're in this together and I will always be a part of any decisions about her care. Occasionally that calms her a bit. 

We are having a quarterly care conference with her team tomorrow, and I will be bringing up this topic. If I get any advice or good ideas from them, I'll be happy to share here.

Korky777

Thank you so much for the insights you've all shared. Dad brings up money occasionally, too. I try to ease his distress about that, but he never quite believes me.

I love the idea of saying that though I'm not there physically, he's not alone in this. That's beautiful, and I will try it tomorrow.

I will talk to the social worker tomorrow to let her know how emotional he is becoming and to see if he brings this up at other times. Visiting in a common area is a good idea. And yes, I've noticed that Dad doesn't say anything about leaving when my brother visits, and only rarely when my husband is with me.

Thank you. I'm sorry that each of you are also facing this challenging situation. It can be so heartbreaking. I'm very grateful to each person who posted a response. Thank you.

quartlow2

When our LO is sad and distressed is the most heartbreaking. I'm sorry I don't have any helpful advice for you. It was so hard for me to see Mom distressed about her living situation. She'd dreaded it since her mother passed away in a nursing home with dementia. Now she felt like this was the end. The only thing that helped me was to ask God for His wisdom in helping Mom. Sometimes a new idea would come out of (seemingly) nowhere; sometimes as a thought or from a friend, forum, caregiver or article.

You're in my heart.

caregiving daughter

I was called to my mom's memory care home one late afternoon, by her caregivers, because she was having an exceptionally difficult time. It was really bad. She was totally set on going home NOW and I was to assist her, per her orders. At this point, I do recall her being wheelchair bound. Visual cues seemed to make all the difference. I first listened to her and told her we needed a plan. I used my ripped jeans (that I tend to wear a lot because they are comfy) and told my mom that I fell and that I needed to rest before we proceed. She believed me because she could see the jeans were torn. I got her comfortable first sitting and then laying in her bed as we made plans. I then further delayed by saying we had to charge my phone before we did anything because we would have to have a phone. I plugged it in and delayed some more. When she got frustrated, I offered to have her look at the phone to see if it was charged. She trusted me enough to know that I would need to be the person to tell if the phone was ready to go. Long story short, we delayed and delayed and delayed until she got tired and was willing to close her eyes. I believe that visual cues can make a huge difference. Telling your loved one that they cannot come home with you because you have a job and there is no one to look after them will likely not work. Wearing an arm brace and explaining that they cannot come home with you because you are going to a doctor may work. Thinking of you...

davidjon

I logged into the message boards today for the first time and discovered your post right away. It is almost exactly the situation I am going through with my mom. I've been trying many of the tricks suggested by others - often exhausting myself trying to redirect her thinking. I don't have a solution either, but wanted you to know how grateful I was to see the post and the responses. Simply knowing I'm not the only one having the "I want to go home" challenge is extremely helpful.

windyshores

My mother is using the exact same words: "I want to go home
 and "I don't know what to do." Like 40 times in an afternoon. She is bed bound in assisted living and today tried to get up to go home.

I tried every possible strategy. Nothing worked. Yesterday I couldn't stand watching her distress or endure my own frustration and gave her an Ativan!

jfkoc

More times than not redirection works best after validation...listening, reading between the lines and acknowledging the emotions. We all want to know that we have been "heard" and "understood". And, all too often the problem at hand is one we can not fix no matter how hard we try. And, again, all too often nothing makes the situation better.

JessiJ

I am also in the same boat.  My LO is living with me and constantly wants to go home.  She requests a suitcase hourly to pack her bags and go.  She's talking about hitch hiking home.  It is very draining and heart breaking to handle.  The redirection no longer works as well.  Hopefully god will send me a sign of what to do now to get through this.

ZackFootInMouth

windyshores wrote:

My mother is using the exact same words: "I want to go home
 and "I don't know what to do." Like 40 times in an afternoon. She is bed bound in assisted living and today tried to get up to go home.

I tried every possible strategy. Nothing worked. Yesterday I couldn't stand watching her distress or endure my own frustration and gave her an Ativan!

Mine is in the same spot. Except she is at home. At times she wants her mother, but don't know what to do or say about that. At times I find myself muttering "I want to go home" and "I don't know what to do"... Which is probably a bad sign.

The frightening thing is, I bought some "sleepy time" melatonin medicine for her, but she won't take it. I thought of adding it to her ice cream, but it really reeks of a bitter cherry flavor. In the end I took it. Overslept the morning after though, so I think that might be to dangerous.

DParan

I came here today looking for the same advice.  My mom was diagnosed with Alzheimer's about 3 years ago.  Recently the gentleman she has been living with had decided that he no longer felt confident in taking care of her.  (Or had decided he had enough and no longer wanted to do this.  Not really sure which. In his defense this came in the middle of a period of 7 days of mom pretty much staying in bed.) Whichever the case may be he was not willing for her to live with him any longer.  I live in a one bedroom second floor apartment.  I could not take her in.  Nor could I afford to give up my place to move to a bigger apartment that would house her as well.  And how long would that be for and then I would be left with an apartment I could really not afford.  It would also have left her alone all day as I cannot quit my job to take care of her. So it was decided to move her to an assisted living facility. Sometimes I feel it was too early for this move.  She definitely has memory issues, especially short term and immediate recall. But, she is not so far gone to not be aware of her surroundings and is still doing well physically. I just felt I had no choice.

We had discussions about this before she moved in.  She was not happy about it but seemed resigned to it.  Since the day we moved her in though she has it in her head this is temporary.  She is always talking about when she goes home and we better not be getting rid of her stuff.  (Which I have to do as the gentleman is talking about selling the house.) The first few days I would tell her this was where she was living now, but it just seemed to upset her.  So I try to avoid the questions and keep her engaged playing games.

But recently the questions have really intensified.  She asks at every visit, why am I here, who's decision was this, who is paying for this.  She recognizes that this can't be rehab, that they do nothing with her. I don't belong her, I am not sick. I want to go home.  I don't really know what to say and how to answer her. Even if I have that discussion she is not going to remember it.  I leave feeling so awful every time I am there and just really do not know what to do.

davidjon

I was worried it was "too soon" or "too early" to move my mom to AL too, but looking back getting ahead of her decline has made things much easier and it has gotten her into a familiar  routine that is comforting to her even though she would prefer to be home. Whenever you think deep down that it's time to move, just know it will only get harder from that moment the longer you wait.