What Do You Do When They Want to Leave?

Miss Ripper

Every single day, my husband wants to leave and he wants to go back to the little western Kansas town where he was born and grew up. He's 82. It's all he'll talk about from daylight to dark, no matter how many subjects we try to distract him with. He doesn't believe that this is our house and insists we get in the car and drive to the farm. We live in Colorado and that's about an 8-hour drive, not to mention nobody is there anymore. If I tell him this is our home, he gets a disgusted look on his face and tells me that's not true.

We've reached the point where we can't let him go outside alone because he'll simply walk off. By the time we find him, it's obvious he has no idea where he is, even though he's perhaps a block or two from the house. He nearly froze yesterday when he did this and it took forever to get his body warmed back up.

My question is this - how do you handle it when the one with dementia insists on leaving? I am at my wit's end and would love to be able to relax with a book or watch even one entire TV show without him insisting we need to leave He's willing to go by himself, but has no car keys and will suddenly decide to stop trying to start a car without them and walk off.. Is there any way to control this or is it hopeless?

Ernie123

If the normal things like fibs and distraction don’t work and it seems to be a an overwhelming delusion I would suggest an assessment by a geriatric psychiatrist who can prescribe meds that diminish paranoia, agitation and delusions. It is common for dementia patients to return to childhood memories because  they are the strongest ones left in their minds and therefore seem to be real to them. Two years ago my DW was convinced our home of fifty years was in fact her parents home. I wasn’t her husband and she would angrily try to force me out before her parents came home again. These delusional episodes became more frequent, violent and upsetting for us both. A referral to a geriatric psychiatrist led to a prescription of a common antipsychotic medication often used off label for dementia sufferers. Almost immediately the problem faded away. Occasionally she would be temporarily confused about where she was or who I was, but she was not upset or angry. She now lives in memory care and has had her meds adjusted several times. In the facility she is content, calm and doing much better than her last months at home. There are no negative side effects evident. I attribute her good outcome to an experienced geriatric psychiatrist  who knows how to assess and treat dementia patients.

Advice I would offer to you as a caregiver is that you cannot deal with this on your own. I don’t know if you have family supports nearby but I had to learn to say yes to offers of help when I was over stressed by 24/7 caregiving. One of my greatest supports was from our local Alzheimer’s Society. I joined a support group, about a dozen men, and I found our meetings very helpful. If you can reach out in your community and find others who are sharing the same journey you are, it will be a help and you will find you can offer advice to others. Attending workshops and counseling sponsored by the Alzheimer’s Society was a huge help to me in understanding the disease, how to respond and recognize what it was doing to me. 

I hope you find the supports you need for your DH and yourself.

Ed1937

One thing you should do is to make sure he is in the database for local law enforcement. They will probably want a picture of him. That will go into the database along with his information.

Crushed

Wandering and Psychosis is why DW went into Memory care in late 2017.  It was traumatic but necessary. I could not keep her safe at home.

Nowhere

Try a therapeutic fib? Tell him it sounds like a good idea, but that you just need to “insert whatever chore” first. He’ll forget, but it might put his mind at ease in the time being.

Miss Ripper

Ed1937 wrote:

One thing you should do is to make sure he is in the database for local law enforcement. They wlll probably want a picture of him. That will go into the database along with his information.

We live in a small Colorado tourist town and my husband was the chief of police here for 22 years, after a 20-year police career in a big city. Therefore, all the police know who he is and that he has this problem, where he lives, etc. Guess that's one break out of this chaotic mess.

Miss Ripper

Ernie123 wrote:

If the normal things like fibs and distraction don’t work and it seems to be a an overwhelming delusion I would suggest an assessment by a geriatric psychiatrist who can prescribe meds that diminish paranoia, agitation and delusions.......

Advice I would offer to you as a caregiver is that you cannot deal with this on your own. I don’t know if you have family supports nearby but I had to learn to say yes to offers of help when I was over stressed by 24/7 caregiving.

Ernie123 - Unfortunately, we live in a small Colorado mountain tourist town and, therefore, geriatric psychiatrists are unavailable, short of a long trip to Denver. He is being seen every six to eight weeks by a neurologist. He was recently put on a med that is supposed to reduce the paranoia, agitation and delusions, but it hasn't had enough time to yet be effective. I also have our son living with us for the last four months. He quit his chef's job and moved home to help me take care of his Dad the beginning of December 2020. If he were not here, I could not handle this alone. Both of us are on our faces today.

Last night DH woke up after sleeping for an hour and was livid because he doesn't want to be a father again. He was accusing me of trying to have a baby with him and wouldn't believe otherwise. I am 81 years old and he is 82 and all I was doing was reading my Kindle on the other side of the same bed...no light except from the Kindle.  He kept our son and me up till about 1:00 a.m. with this and other weird behavior, like standing in a dark room and refusing to go to bed for hours. He slept late this morning, had breakfast and slept in a chair until right now, which is 1:00 in the afternoon. So far, he hasn't had the chance to start wanting to "go home" and telling me this isn't our home (we've lived in this house 38 years now. He designed and built it.

Miss Ripper

Crushed wrote:

Wandering and Psychosis is why DW went into Memory care in late 2017.  It was traumatic but necessary. I could not keep her safe at home.

We are starting the process of looking into memory care facilities and also getting the finances organized, plus all of the other things needed to do this change. We were just discussing the fact that putting him somewhere is not an easy thing to do. This would be myself and my stepson, my DH's only biological child.

Ernie123

The decision for placement is so difficult, but  I would suggest sooner than later for both of you. It is inevitable, and if his behavior presents any threat or danger to you it must be done. A good facility has trained staff who will manage difficult behaviors easily, it is their job. You are too invested emotionally to try and manage those behaviors. My wife’s placement came about because she was becoming violent with me. I was a trigger for her delusions. So the decision was made for me. Placement will be hard, but you must follow the path that is best for you both. I hope you can find a facility soon and you can get past this most difficult transition. You will feel grief and guilt which is normal. But the passage of time will hopefully bring you some peace.

Lorita

Morning,

 Ernie, I'm glad things are better for both you and your wife.  I have a wonderful neighbor and he's beginning to deal with alz. and his wife.  Do you remember the name of the medication?  This might be something he could suggest to his wife's doctor.  My husband had vascular dementia and a couple of times the doctor gave us antipsychotic medications but I never gave them to Charles.  I read the black box warnings and deemed it better to contend with what was going on than to give it to him.  It worked out all right. 

 Miss Ripper - what you're dealing with is certainly a problem.  We live in the country and have a fenced yard.  A couple of times my husband left - I had no idea where he was going because he never talked about going home - just wandered off.  A friend suggested putting locks on all the gates.  I did this and it completely solved the problem.  He'd try to get out sometimes but couldn't get the locks open.  If you live in a home that has a fenced-in yard, this might work for you.  They also have little alarms you can put at the tops of outside, or inside, doors that will sound a very loud alarm when the door's opened.  If he tried to get through a door, it would alert you.  I found them at the Dollar Tree - really worked for us.

  

Ernie123

Lorita: Regarding the medications, it is my understanding that it is common practice for antipsychotics to be used off label when symptoms of dementia veer into more extremes of delusions and paranoia and potentially violent behaviors can result. They are not prescribed unless there is good reason. My recommendation is to seek the opinion of a geriatrician if possible. As with any medication individuals vary and what works well with one person may not work with another. Dosage levels must be determined carefully. In my experience and my wife’s, their use exceeded any expectations I held. The first medication was Risperidone. It helped calm her feelings of paranoia and her violent reaction to me when occasionally she did not know me. There were no adverse side effects. However, more than a year later, issues of paranoia recurred. She was so fearful someone was coming to get her she would hide in her closet. Her geriatric psychiatrist switched her to Olanzapine. Immediately, within two days, she became calm, relaxed and no longer fearful. She has been on that medication now for almost a year and,as with Risperidone, no adverse side effects. I visit her in memory care daily and assist with her care. She is consistently calm, happy despite her lack of short term memory and cognitive deficits. I attribute her comfortable state of mind to the effectiveness of her medications. I hope this information can be of help to your friend.

Miss Ripper

Lorita wrote:

Morning,

  If you live in a home that has a fenced-in yard, this might work for you.  They also have little alarms you can put at the tops of outside, or inside, doors that will sound a very loud alarm when the door's opened.  If he tried to get through a door, it would alert you.  I found them at the Dollar Tree - really worked for us.

  

We do not have a fenced yard. We live in the mountains and up high where it's very rocky. He leaves via our long, steep driveway when he walks off. We were just discussing getting those little alarms for the doors. That's likely going to be our solution. I will check at the Dollar Tree next time we go to a bigger town. It is 40 miles away.

Miss Ripper

Ernie123 wrote:

The decision for placement is so difficult, but  I would suggest sooner than later for both of you. It is inevitable, and if his behavior presents any threat or danger to you it must be done. A good facility has trained staff who will manage difficult behaviors easily, it is their job. You are too invested emotionally to try and manage those behaviors. My wife’s placement came about because she was becoming violent with me. I was a trigger for her delusions. So the decision was made for me. Placement will be hard, but you must follow the path that is best for you both. I hope you can find a facility soon and you can get past this most difficult transition. You will feel grief and guilt which is normal. But the passage of time will hopefully bring you some peace.

Ernie123 - I have chosen a facility already and have been in contact with them. He doesn't present any threat to anyone, so far. Yes, it's going to be very difficult when the time comes. However, my mother was in this facility for physical problems that prevented her return to the altitude and I have personal experience with the care. She was there for two years. He is not yet at the point where we feel the need to place him, but I know the day will come, thus I am preparing.

Lorita

Hi,

 Thanks, Ernie, appreciate the information.  I think we had a prescription for Respiridone for my husband but never used it.  Never tried the other one.  But, I'll pass along the information.  So glad they helped your wife and that she's doing well.

 Miss Ripper - I hope Dollar Tree still has those alarms.  It's been probably seven years ago when we bought ours.  I think it was Dollar Tree - or, maybe Dollar Store.  If you find them, they're easy to install very high up on the door.  Charles opened the door I put one on twice - each time the very loud alarm went off and it scared him so he immediately closed the door - never once looked up.

  

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HSW

Can you bring his child hood home to you? Town pictures, maps, scrap books. TV shows he watched as a child, newspaper etc 

Do you have his family on the walls? My DH once said that is how he knows he is home. I also put his name on his bedroom door.