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My dad lives with his wife in a house (her house) that he moved into 17 years ago when they were married. He began showing early signs of dementia since 2010. He has progressed to the point that he mixes up the fact that he thinks my mother is still alive and needs cared for and that he lives in his childhood town. He only knows that his wife is a person that cares for him, but not that she is his wife. She does not have any of his personal belongings out in the open other than pictures of the two of them, which confuses him. When sun-downers syndrome occurs he thinks it is time to go home. He gets frustrated that he can't just leave or that I won't take him home (or to church). He gets upset he doesn't have his keys or any money in his pockets. My dad is a fall risk. He has very little balance but doesn't remember he needs to use his walker, or he pushes it aside and doesn't think he needs it. After all, he doesn't realize he is 88 years old. He only began using the walker after a heart attack last year. He has fallen several times and gotten hurt but remarkably he heals very quickly.


What does anyone suggest my family says when he thinks it's time to go home. I try to distract him and change the subject but that is working less and less.


Thank you in advance for your suggestions.

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Hi ptshopper, we have experienced what you have in the last 2 years and are her caregivers in-home. Unfortunately we're at end stage now and have hospice to help out as of today. If distracting or diverting to another subject is no longer helping, I would suggest speaking with his psychiatrist or geriatrician for an anti-anxiety medication. Those with dementia have "triggers" that send them into that state. Especially if his memory is only long-term, he has a lot more anxiety than usual. I recommend speaking with his doctor or having his wife speak with the doctors to help with that type of anxiety. It was a struggle for us when Mom had manic episodes and was very confused but having the proper medications helped calm her which helped us to care for her better. It is trial and error and difficult to find a happy medium on the right dosage and the right medication. Hang in there! It is a journey. It is distressing to see because of course he's your parent but the best way to treat a lot of these symptoms of dementia, I've learned to detach myself emotionally so I can see it for what it is.
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I know how uncomfortable that is. Your post reminds me of my dad. He had bad knees and couldn't walk well. He would walk around holding on the walls or furniture. Wouldn't even use a cane. Wasn't until assisted living he used his walker. (never thought it belonged to him tho) It had to be put right in front of his chair or he'd never use it. he would use it to go to BR and then leave it in BR.

my dad was a real booger at home. at the time, I REALLY didn't know how to handle him. Both my mom and dad ended up in assisted living.

My dad was still a booger in AL. They were both safe in AL, but I felt bad for my mom because she still had to deal with him. and she didn't know how to deal with him either(they both had dementia)

My dad would start in on some 'worry' about something. and want to get up and go take care of it. And you couldn't convince him otherwise. The only time  you could distract him was with a cookie or chocolate candy.

he did end up getting on an anti - psychotic meds. because he was combative towards the end. he passed in 2015 at almost 93.

My mom started having paranoia problems.(plus other behavior problems) and she saw a geriatric dr who prescribed an anti depressant. it helps even out her mood. so she's not so 'worried' and obsessive about things. She's almost 89.

if you take Dad to the dr. - write the dr ahead of time everything that he is doing. that way you don't have to talk about it in front of your dad. Cause it really hard to tattle on your parent ....in front of parent.
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trying42 Aug 2018
lots of great suggestions Wally!
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When they say that they mean Home to Heaven
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whaleyf Aug 2018
As nice as that sounds, he's not asking to die. She said he doesn't understand why he can't go home, drive a car, stuff like that. He doesn't understand that where he's at is home.
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It sounds like you're doing the best you can when he gets upset and wants to go home and is confused about things. It's very frustrating when they won't use their walkers, but, it's really a matter of being with him at all times to insist that he use it. It just doesn't occur to them to use it. Eventually, my LO went to the wheelchair.

I agree about discussing his anxiety with his doctor. Often the dementia causes anxiety that can be very distressful for them mentally. A daily medication for anxiety/depression, really helped her a lot. It didn't make her drowsy at all. There are some meds that do that, but, I would discuss it with his doctor to see what might be best for him.

I've read that some people continue to ask about leaving to return home, but, most of those that I know do stop at some point. If his wife is the primary caregiver, I'd suggest that she get some help. It's very stressful to do that around the clock for a family member.
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disgustedtoo Aug 2018
Mom gets Lorazepam (for anxiety), but a VERY mild dose and ONLY when she has sun-downing that they cannot redirect or refocus her out of. Generally she is easy to redirect, but once in a while -yeaosah! She does NOT get this every day. Doc was hesitant first because:
* it can mask UTI (reason why we needed the Rx along with antibiotic)
NO doc, we are not using this daily, only AS NEEDED!
* it can make one more inclined to fall
NO doc, but I was more concerned about her getting hurt while ranting and raving, herself or someone else!

It is a med that will work pretty much right away (not 2 weeks from now) if it is going to work. Generally the issue is at night if it happens, and usually within 30-45 m she is ok, and then shortly after goes to bed. She started using the walker months after asking for it, but uses it most of the time now.

You will have to monitor your dad after he gets a dose, since he forgets to use or dismisses the walker. Since there is a fall risk with these meds, you would want to watch over him after he gets his!
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This is a terrible disease and I too find it hard sometimes to accept that this wonderful man who for 95 years was my rock... is slipping away from me. My dad also sometimes lives ( in his mind) in his childhood town and when we visit that town his remembers all the names of his neighbors and recognizes their homes. But, he also forgets his walker and frets over not having any money in his wallet or understand why he cannot drive my car.
The biggest problem we came across was his 'frisky' behavior and preoccupation with sex. It actually got him kicked out of his assisted living situation. The doctor put him on birth control pills to help lower his testosterone. It seems to be working so far. He still looks at women differently than he looks at men but he does not ask for 'favors' any longer. Fingers crossed.
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Zdarov Aug 2018
Aw, bless him. Yes, fingers crossed on the new med, sad!
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Google what it means when they ask to go home. They are not meaning home as in a house or even heaven. As I understand it, it means they need security, maybe they are cold and need a blanket, maybe they are hurting and can’t express it. Try massage particularly bottom of feet. Look into essential oils.

Last year, My dad was asking to go home, forgetting his walker, falling and healing fast just like your dad. He passed away last month. He was my best friend and I would say to you, you can’t fix dementia but your dad is receiving everything you are giving him especially love. Massaging him regularly soothes him and you too. Cherish the time with him.
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‘Going home’ can mean anything from wanting safety to a childhood home.
I’ve been caring for my mom 7.5 years and the ‘going home’ comes and goes. Your dad may need a light balance of meds; the primary care doc might not be enough. I found a psychiatrist or neurologist can reduce the anxiety and he can still keep his energy. Crucial for home care.
Reading your post there is another huge concern; your mom! How is she doing? Is she close in age to your dad? I’m 20 years younger than my mom but her energy is through the roof! If your dad is active; and being an ‘exit seeker’ he has got to be wearing her out!! Does she get any support?
Mourn town has Council on Aging; it’s nationwide, but each has different offerings. Ours has dementia daycare!! It’s an affordable way to keep them occupied and active, social. In return; I can clean, run errands and clear my head.
please research what community support his wife needs. A tough statistic is 40% of caregivers pass before the person they are caring for. She needs help!! Please bless her and have a conversation with her. Bless you!
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cetude Aug 2018
medications are not without risk. Especially with a history of falling, any kind of psychotropic or narcotic will increase risk of confusion and falling considerably.
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a person with later stages of Alzheimer's tends to wander because their mind goes back to childhood and they are trying to go home where they used to live in the past. Their long-term memory tends to be more in focus than short-term.
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Emmdee Aug 2018
This does not apply to all Alzheimers people!
My husband (diagnosed in 2011) does not relate to his childhood as you describe, he does not seem to remember his childhood at all!
How I wish people would not give advice which is flawed.
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Although I haven't tried this, some friends have had success driving their LO around the block when he said he wanted to go home when sundowning. Just the act of moving and going somewhere was enough to convince him he had changed his situation. Not sure it works in all situations, but it's worth a try.
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Emmdee Aug 2018
Driving around certainly helps my husband! The only problem is that 50/50 he finds it difficult to get in the car! Needs lots of directions, and there is no physical help I can give! So I am wondering what I can do when he fails completely....... However, in the meantime - we go driving around the hills and valleys and coastlines near where we live in Bristol Uk - and we both get a lot out of it. We have reluctantly stopped visiting the Welsh castles etc because he finds the uneven walkways too difficult - but certainly getting out and about, even if he doesnt get out of the car, is helpful!!!! Love to all of you!!
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Distract and redirect, but I know it isn't that easy.
Mom's away visiting her family, (or they tented the house for termites, or they're painting, or laying new carpets or....)we'll go back when she gets home.
I heard there was a big accident that closed the highway, we can't go until it reopens. Let's have some supper while we wait.
I think it would be OK if we watched church on TV or online for today, I'll try and take you next time.
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My mom wants to go home. She has lived in their present house since 1975. She believes she needs to take an airplane to get there. Every morning she gets dressed up, tries to get my 97 year old father up so they can catch a plane to go home. She calls me constantly during the day,"we were only supposed to be here for 2 weeks. The man has our tickets and we have to get them." I am so tired of her constant cry: I want to go home. I believe that she really wants to go back in time, to when she could drive and live her life independently. If anyone has an idea on how to stop this, I'm all ears. I have driven her around the area and had her give me directions to their house ; unfortunately the "we were supposed to be here for 2 weeks"scenario comes in handy here. Finding stuff in the house that only they would have also backfires, she says it's a dirty trick to confuse her. So I'm sorry ptshopper, it sounds like your dad wants to go back in time also.
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As was mentioned here, when my Mom became insistent on “going home” going for a drive was sometimes helpful. We’d go through a park and other interesting places. One time she gave a caregiver turn by turn directions to a house she had sold 30 years earlier. She just wanted to see it and was ok to return to her house afterwards.
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#1 DON'T feel guilty
EVERYBODY GOES THROUGH THIS PART!! I still feel guilty.

Question(s): why only the pictures of family in his room?
Is he in a facility that he doesn't have a private room?
Does he have a favorite chair like a recliner that he could still use, depending on his physical condition and space for it in his room?
Does he have clothes that he would know are his?
Is he in a "nursing home" vs a "group home"?
Very big difference regarding care if you find a really good one...they are some what more expensive...but if Mom has the $$$, better to use for Dad and later Mom than save to give as an inheritance.

He needs things around him so he will feel as if he were home. A few pictures ain't gonna cut it.

Does your Mom go to see him often?
If she does, when it's time for her to leave have her tell him she has several errands she must do and she'll be back as soon as she can.
The caregivers should be helping talk him down when the Sundowner's begins too.

Both my Mom/step-father are in a great group home, they have a "suite".
I bring things each time I go to check on them (every month as I live out of State) to help Mom especially to feel better about where they are now.
My last visit I took her an afghan her Grandmother made for her. Mom had it on the back of the sofa for years, then placed it in her cedar chest.
I also have a small photo album I add pictures along with a description of who the people are in the picture(s) and sometimes a small story about them and her.
My step-siblings....nothing for their Father except video phone calls....oh yeah! I don't have anything anywhere for him.

Every little bit you can do to help ease him into this the better.

Talk with the facility manager/coordinator/owner to find out what you can do to help your dad more.

Remember, his reality is the past not the now. You have to learn the tricks of the trade. Talk with an in-home care franchise owner for help to navigate this ship.
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disgustedtoo Aug 2018
You might want to reread the post - dad lives at home with his wife: "My dad lives with his wife in a house (her house) that he moved into 17 years ago when they were married."

She also said no personal belongings because they confuse him and only pictures are of dad and his wife are out in the open (probably to reinforce the relationship, but sadly it sounds like it has gone beyond that.)
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"To go home" means a variety of things. When these questions arise, redirect him and talk about getting him his favorite meal or ice cream,
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So sorry your dad is so upset.

I would often put my mom in the car and drive slowly around the block. Then she was home. My dad had to have his wallet. A man has to have his wallet. I put $2 in it in a $1000000 bill a couple of old business cards he had and a copy of an article written about him when he retired at 91. He was happy then

My mom loved one of the photo frames that would automatically play a slideshow of photos that I chose. She would watch it over, and over, and over, and over, and over. And the photos are pretty easy to change out too.

Redirection is the best answer. Mirror them. Get down on their level face to face. Hold his hand.
If he says - 'why can't I go home'? you say 'why can't you go home'? Dad, do you remember the big porch on the front of the porch? (Or the chickens in the backyard, or the swing off the tree, or some nice or funny memory). Usually remembering the nice memory does not bring back the 'I want to go home'; it can lead to a discussion of comfort for him. He wants to know he's being heard, and you're repeating his questions helps him know that.

There's a term - Hiraeth, that fit my mother. I think it fits many of these souls looking for their past, and lost in their future:

"Hiraeth: home sickness for a home to which you cannot return, or for home which may have never been; an intense form of longing or nostalgia, wistfulness; the grief for the lost places of your past.

I hope things get better for you all.
Read "The 36-Hour Day", it is very helpful.
Or everything (books, lectures, videos☆) by Teepa Snow. Brilliant woman on dementia/Alzheimer's.
Good luck.
dejawog
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ptshopper Aug 2018
Thank you.
A very good idea to read Teepa Snow's book. I know of her. I'll get the book.

I tried the slideshow photo frame years ago, but his wife eventually put it away.
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Here's what I do. After 9 pm. I keep the house real quiet. Absolutely no news. Or stressful TV. Never talk about money. In the bedroom I keep it real dark for her sleep. In the morning I try to see if she gets 1/2 of sun in the morning. Helps her rythem. With the transfer of day to night. I ask her to eat veggies which helps the brain. and I'll take her cruising. Like for a ride in the car. This stuff seems to help.
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shad250 Aug 2018
What happens if there is a storm at night?
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Since attempts to redirect are no longer working all the time (and will get worse), you should consider some of the methods suggested for sun-downing:

more lighting at night
close curtains/shades before it gets dark
redirecting when possible
keep to a fairly strict schedule
keeping everything calm
perhaps some light exercise well before this sets in
...
Search for "methods to deal with sundowning" - there were way too many responses for me to post here! Stick with the clearly safe ones (NIH, WebMD, healthline, aplaceformom and even agingcare.com!) Most of these will suggest similar methods, but you might find some suggestions that are only on one or another website. It would be best to know as many methods as possible and use those that work!

You can consider medication, especially if nothing else works. Despite scare tactics from some, a mild anti-anxiety might help. Personally my feelings about medication is less is better, BUT sometimes they are necessary.

These are not narcotic drugs. They do come with a fall-risk warning, but so far has not impacted our mother. She does NOT get this daily as she only has random times when she cannot be redirected. In her case, when she gets wound up she is more likely to hurt herself or someone else (staff!) than she is to fall, so this is a necessary evil, just not all the time (probably a total of 7 in over 3 months?)

However hers is a very mild dose AND it does not take weeks to kick in. It is worth a try if nothing helps - just keep an eye on him after he gets his dosage, since he forgets or dismisses his walker.

Your best bet would be to consult with his doctor. If possible a specialist who can best assess your dad and recommend the best med or combination of meds. Starting with something mild worked for us... for now... :-)
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ptshopper Aug 2018
Thank you for your response.
We have had doctors (PCP and ER) suggest mild medication for anxiety and even to help sleep, since his sleep schedule is often switched from night to day. Especially during a full moon. His wife refuses to wake him on a regular schedule "because he is up all night". ( so she says). She refuses to give him medication to sleep because she says it will make him groggy during the day. But, he sleeps all afternoon now. She insists anxiety medication will just make him more agitated because that happened to her brother. Does it sound like we are going in circles? I have been dealing with this for years.
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Thank you disgustedtoo for pointing out the obvious.!!
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