Boorriinnggg
Boredom has become a big issue with my LO. She has no interest in any of her previous interests. (My teacher aunt would kill me for that sentence). Early on there were long walks on the local beach, visiting local attractions, she had an interest in cake decorating (took several courses with granddaughter, best part was Consuming the spoils) teaching piano, some crafting with the grandkids, helping around the yard, etc. Now the day is spent mainly in the recliner watching the birds and squirrels on the feeders and collecting a few items for the trip “home”. She will help a little around the house, but tires easily and has a bad hip and not much strength (tremors). After a while she will get a few of her things, coats, a sweater or two, night gown, favorite teddy bear, etc and spend a reasonable amount of time packing and arranging them in the car before we are ready to go. After the trip she will spend time putting things away, until it is time to go again. We have two very nice senior centers in the county, one 15-20 minutes away and a large brand new one 30-45 minutes away. She has no interest in visiting either. I have tried a number of excuses to just go and see what it is all about to no avail. We also have a large college nearby, we would attend plays, talks and especially the Thursday briefing on their archeological work. Turns out we both have an interest in archeology. We have tried to increase socialization, as we have noticed she seems better after a visit from family or successfully attending a family gathering (very rarely will we stay more than 15 min, if she will even get out of the car. Shopping is also gone. She used to spend a lot of time looking around in several local stores. There doesn’t seem to be many options, but if anyone has any ideas, please let me know. Oh forgot, TV. Has no interest in watching TV at all. As a matter of fact watching something mundane with minimal commercials doesn’t get her interest and at times seems to heighten here frustration and desire to go home. I think she has trouble seeing and processing the information. Thank you.
Comments
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Hi ClarkEb-i doubt that this is boredom but rather is apathy and loss of executive function. It probably is boring to you, but sadly it is par for the course and there probably is very little you can do about it. It doesn't sound like it is distressing her but rather you. If she is content sitting and watching the birds, so be it.
I'm a bit confused, is she spending days with you but then "going home" at night? That part of your post wasn't clear. She doesn't sound like she should be alone at night?
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People often think of dementia as a disease of memory loss but don't always realize how other dementia losses impact the PWD. Apathy is common in the early stages, so much so that loss of interest in previous hobbies is often listed in those Ten Early Signs of Dementia articles.
Your LO has changed. She no longer has the memory for a 30-minute TV show or a book. She may not recall the skills needed to enjoy things she used to do-- especially if she learned them as an adult. Memory tends to be LIFO. Lack of executive function means she can't put together a plan to entertain herself on her own. If she's having trouble with auditory processing, watching TV or conversations with others would be difficult and exhausting.
Conversations about and planning activities together is beyond her now. She's probably not ever going to say yes to an activity if you feel the need to get out or to make her do something. You could just bring her along with you and see if she goes along with it. She might depending on her personality. Or she might fight you on it. Same with the senior centers. I would caution you against trying to include her at a mainstream community senior center as the activities and conversation will likely be beyond her ability to be successful. A memory cafe for you both might be a good fit or even a day program for PWD if you feel the need for her to be out of the house for the benefit of you both.
She's probably not bored even if the former-her would be.
HB
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Understand your first sentence just couldn’t figure out a good topic. It doesn’t seem to bother her, although at times she will mention she needs to go to the other house, nothing to do here. Home is here with us, just her asking to Go Home, telling the dog we will be going home, isn’t that great and when we get home after a short trip, she is so glad to be home. Home is our residence, although at times i wish there was another place we could go. We do stop at our kids/grandkids homes, but she is not interested in going in. She is not left alone at all. We are working with a local caregiver, who comes in two days right now, from 4-8 pm, however, LO “needs” to go home around 6PM. So it will take time to work this out.
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Thank you. Your insight is greatly appreciated.
i will check with the local OOA and see if there s a memory cafe. I had a great contact a the office, but learned lately they have moved on. Bummer.
She will eagerly go along on any errands we have for the day, so i try and keep something on the agenda for after breakfast, even if it is only taking the trash to the transfer station. She and the dog are happy companions. Everything is curbside pick up. Today for example, we have to make a “banana run”. She enjoys a banana with breakfast and we are about out. The nearby Weis store has a great APP for placing orders. Occasionally, right before bed, she will ask what we have planned for tomorrow. I used to make silly remarks like going to chase whales. But learned that just caused confusing. Now it is usually, “going to the Amish market for vegetables or plants”. She spent her early years in a small PA town with a large population of Amish. Usually prompts a few stories.
thank you again……
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I agree that a lot of what you're seeing is apathy and not boredom. I'm sorry you're both going through this. A couple of things that sometimes engage my husband are coffee table photography books (mostly pictures, some text to read but not too much- he especially likes the ones about animals or cars) and a dementia robotic pet (he has a joy for all dog that he pets, talks to, sings to). I also find that a short walk helps him engage. But I'm learning to be ok with him sitting and zoning out. My theory is that engaging is exhausting for him and he needs time to reset.
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I can certainly relate ClarkEB. My wife is in a similar mode where she tends to just sit in her recliner and doesn't have much desire to do anything. She typically has no energy. She will start to do a little home redecorating and stop not even half way through and leave it for a week. From the comments, it sounds like this is par for the course with ALZ.
Thanks for making the post, I can stop worrying that it's something else.
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If she isn't able to watch a "TV program" but will watch outside animal activity, would she be able to watch some of the YouTube animal videos? There is one called Cute Baby Animals by Relaxation Films that is a little over 3 hrs. No words just calm music. (And the baby animals are super cute!)
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Every time I get up and leave the room, my DH turns the TV off. It used to aggravate me to no end, until I finally realized the noise is so hard on him. He would rather stare out the window with silence. I know he cannot follow even a simple commercial (I have to explain what is going on) so I know he cannot comprehend a 30 or 60 minute TV show. So, what to do to fill the day? We go to the grocery multiple times per week, and he loves to go to the Dollar Store and buy York peppermints. He likes to talk … he has stories about meeting Dolly Parton (which he never has) and the details are amazing - the story goes on for 30 minutes. And I always comment how wonderful those memories are for him. He smiles and agrees. But, sometimes it’s just hard to fill up the day, and I feel guilty that I am not helping him with enough activities. Hopefully, when spring and summer get here, we’ll get out more.
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Here are a couple of off-the-wall suggestions.
Does DH like looking out the window? Would having a bird feeder outside engage him?
Our Roku box has a screensave, "Aquatic Life" (free), that displays an animated aquarium with colorful fish swimming around and other stuff going on. DW and I find it rather hypnotic, and it's tempting to just sit and watch it instead of a program.
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She is in a different space now. I think that people with dementia spend a lot of time “in their minds”. It may seem boring to you but it is what her mind can handle. I imagine they dream a lot so sleeping to them might be like you watching a movie. Trying to make her do and enjoy things that she used to is an exercise in futility for you. Too much activity or noise is hard for them to handle and it may be very frustrating. Often what is most enjoyable is a car ride followed by ice cream. My husband used to sleep during drives but would wake up and watch the scenery for a short time and then go back to sleep. He was happy and I learned to accept that that was all that he needed and could handle.
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@ClarkEb you have received some great insights and ideas from our forum mates. I think I saw something in your posts about your DW getting antsy or wanting to go home around 6pm? This is called sundowning. Here is a link to explain.
Also, "home" is a relative term that usually means longing for a space where things are safe and familiar, pre-dementia not necessarily a specific location that even exists anymore.
Here is a link with several things to do during mid-stages of dementia. I hope this helps.
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A lot of this describes my partner, and it's helpful to hear from all of you that this is an expected part of the disease and not any particular failure on my part or unusual development on her part. She spends her day looking out the window, patting the cats, annoying the dog, sitting in (my!) recliner, going to the bathroom (our water bill!!), and if I'm home, coming into my office to tell me about the bird she saw or why are we out of granola bars or isn't this a cute picture of the cat? After about 11:30 am, everything I say or do is something to argue about. If I'm not there, whatever she wants to argue about just repeats over and over in her head - I got 7 texts with essentially the same message about going for a haircut last week. It gets worse if there's anything happening that day - anxiety on her part turns me into the worst person ever, and she doesn't hesitate to tell me how and why. 98% of the things we used to do together are off the table now. She comes with me to the barn every evening to take care of the horses, she volunteers a few hours a week (fingers crossed that can continue - I have no idea why they still let her come). Once in a while I can get her to come to the grocery store or Farm & Fleet, but she would rather be home -- unless I'm late, then I'm in the doghouse for making her wait because (oh the horror) she's been home alone all day by herself - even if she turned down my offer to do something that would get her out of the house. Now that I"ve seen the explanations of shadowing, I have a new way of looking at some of the things she does - thanks for that - and while it still drives me crazy, it helps to understand the context.
I'm probably going to be the next one asking, "how do you get them to accept someone coming into the house to stay with them if they won't tolerate the cleaning people we've had for 10 years?" We have one day program in our city (that I'm aware of) and it's run by a hospice agency with a well-known name. I can only imagine the reaction I'd get if I tried to drop her off "for hospice!"
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Thank you, i looked up several, but she showed no interest, however, i did finds several nature things like a walk in the woods or views of the states. Thank you.
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We have several bird feeders in the tree out front that she watches. We also have this spring loaded thing called a “SquNgee” (squirrel bungie) that is sold by a local bird store. Attach an ear of corn (luckily we have a son-in-law with a big farm) and watch the fun begin.
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I guess I’m late to this thread but still adding my 2¢. I was thinking that you could take her to the senior center(s) without really discussing it with her. You could just be going for a ride and YOU want to check it out since you’re right there anyway. Will she understand what the building is prior to walking/wheeling into it? Becoming activities director for my LO was one of my least favorite caregiving tasks.
As far as the TV, again, I’m not sure I’d discuss it. I was thinking of the many options on YouTube also. Besides many animal shows, like Pet Collective, there are dancing videos (ballet and ball room were a fave), concerts, “how to” and senior exercise videos. You can find anything on YouTube. My LO watched TV most of all as she progressed. Lawrence Welk was very common in our house. There are aquariums on video with lovely music to watch the fish to. It’s really endless. I ultimately subscribed to many of the streaming platforms so there was variety. I would change it up often, not consulting her much except asking “is this good”.
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Here is a favorite 3 hour YouTube video of soothing music and mainly nature images. https://www.youtube.com/watch?v=qk5xuWNFUvY
It was a regular favorite background video for kindergarten naptime, and I love using things like this for me to wind down or meditate, too. DH sometimes sleeps better with soft music like this in the background. It may entertain a PWD who is awake but can't follow storylines and plots on regular TV shows. And there is nothing violent or confusing here, to trigger delusions (unless they end up swimming with the dolphins or whales later 😉 We've never had that problem though).
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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