My wife's Alzheimer's has become worse last 6mos in memory care, which she did not like from day one even though the aids are very nice & help her . I live in independent living in same facility. She has been physically healthy & does not get sick. She asks for me all day long. We have been married 64 years. I see her every afternoon & eat dinner with her & sit with her when she goes to bed at 6pm until she falls asleep, usually by 7pm. She wakes up after midnight (2 to 4am), gets up and walks until 3pm. She's on RX's for anxiety/aggitation, which helps somewhat but they say ADHD meds won't help anymore. Her walking is getting more unstable. She has a walker but keeps losing it or leaving it behind. She hurt her thigh on her last fall and hass been using a wheelchair for a few days when she's tired of walking. Her bathroom is her torture chamber since she is fearfull when the aids help her get on toilet & give her a shower. She won't join in most of the activities. She's been on hospice the last 3 months. Our children visit her every weekend, but she will only stay about 2 hours at family functions. She can't stand noise and is hard of hearing.

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The question isn't who has encountered this 'problem' /situation (although knowing that could help you feel better), the question is "How do I cope in this situation - which is hard for me - and my wife.

It sounds to me that she should not be allowed to get out of bed in the middle of the night ... or have "bells and whistles" on the bed to alert staff that she is / has gotten up / or attempting to.

* Sounds like she needs more 1-on-1 support during the days / when she wants / is walking around. To lose a walker or leaving it behind tells me that she shouldn't be walking alone anymore.

Being fearful of the bathroom / shower could be dementia (fear of water is common) and perhaps hallucinations. Read up on this. There are 'reasons' - in her head - for her fears / resistance. In her (confused brain), she is 'trying' to protect herself from harm.
- Perhaps ask them to do sponge baths, instead. Is there any reason why she actually needs to get in the shower ? if she is kept clean?

While you do not mention yourself residing in Ind Living, do take care of your own mental / psychological health. Perhaps you are. This decline must be very difficult for you. This is a very long marriage/union. Watching / realizing your beloved is declining as she is must bring you immense heartache, sadness, and grief.
- How do you take care of yourself?
- Do you talk to others about how you feel?
- How do you have some fun?

Take good care, Gena / Touch Matters
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Reply to TouchMatters

Someone here mentioned restless leg syndrome. If you read the symptoms it could be a cause:
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Reply to Geaton777

There has been some wonderful suggestions here that I will keep in mind to share with others as well, so thank you to everyone who has commented.

It's always good to ensure that we understand why people do what they do and that it is for the reasons we feel it is and other things have been ruled out. That's the first step, just in case it's something more serious and/or can be resolved effectively.

I'm not sure if you wanted to possibly try natural products such as essential oils etc. to help. I make a specific dementia blend as well as an ADHD blend that I rely on, even more so than the meds sometimes. Oils such as lavender, ylang ylang and vetiver are wonderful for calming the mind, with lavender having the added bonus of supporting people with dementia through a form of reminiscence therapy. As long as it's safe to do so, a diffuser in her room may help, but even if it doesn't make a huge impact, the room will smell nice! Please ensure it's 100% pure oil though as other products are full of chemicals which may cause greater harm.

Without much information on likes/dislikes, music is another sensory support for people with dementia, sometimes even leading to people who are non verbal actually speaking (usually singing the words though). I'm thinking that if relevant, this may support her focus and/or mood at least for a short time during the day. Continuing to enjoy hobbies and interests until there's no possible way to manage this may help as well.

The lack of time spent at social gatherings is normal for someone with dementia and for your wife, this is exacerbated by the ADHD and hearing issues, all of which make gatherings of more than 2 or 3 people uncomfortable so your wife is 3 times more uncomfortable.

The sleeping sounds like it could be a circadian rhythm (body clock) issue as your wife appears to be getting enough sleep, just at different times to most of us. Body clock issues are common with ADHD although we usually have the opposite problem. I don't feel tired until around 1-2am and then my brain doesn't wake up until at least 10am, no matter what time I physically get out of bed.

I wish you and your wife all the very best and hopefully some of the ideas from everyone here will help support you both.
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Reply to VanessaD
Madisoncuckoo7 Apr 19, 2024
I’m most curious about that ADHD blend! I enjoy lavender essential oil myself.

A brilliant caregiver tied a small scented sachet to the back of mom’s wheelchair, near her head. It is very gently scented, not at all overwhelming. No miracle cure, but very sweet!
donald88: Hospice should be providing comfort care. Or speak to her physician.
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Reply to Llamalover47
TouchMatters Apr 19, 2024
Good point. What is Hospice doing to support this woman? - and her husband ?
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I’m so sorry you’re going through this.

Just fyi I have ADHD, so does my 88 yr old mother in memory care, so do a lot of other relatives on my mother’s side . We pay our bills on time and arrive on time ( adhd miracle ) but none of us can sit still!

Caveat, I don’t know how adhd and adhd meds affect the elderly. I do know that my mom always was moving until she had a seizure that essentially zapped certain parts of her brain, now she’s still. Two other elderly relatives with ADHD - one with dementia, one not - also were big walkers and movers and ‘do-ers’, right until they passed. Myself, it’s hard to explain, but I literally can’t sit without fidgeting. I get vigorous exercise 5-6 days a week and my body still can’t stay contained in one place. Group meetings where I have to sit in place are very uncomfortable for me. I don’t think my mom or adhd relatives could do sit down group activities either!

For these reasons I really like Beatty’s suggestions. Getting her in a wheelchair part of the day where she can tap her feet and move her arms and roll around sounds like a great idea. It might also be worth it to experiment with fidget toys, things she can fiddle with and move her hands. Fiddling with things with colors, textures, even smells. Visceral experiences, like popping outside and feeling the wind and the sun. Looking at active animals is another good activity. Maybe a bird feeder or little solar fountain outside a window to look at. I’m just throwing a bunch of ideas out there, but you get the gist of it. Think movement, touch, sight, possible smell.

There’s been at least one study now that shows that adhd folks who move and fidget while doing a ‘desk task’ ( like math problems, say ) focus better. I can personally attest this is true. don’t know if your wife needs to focus, but I’m guessing her body has to move. So lean into the fidgeting , I say.

As for falling, that’s a tough one - there will always be falls. Best thing to do is try for mitigation. But my mom even falls out of chairs. I also really like Beaty’s suggestion of bright ribbons on your wife’s walker.

Excuse the long answer! Please let us know how it goes with you and your wife.

Take Care
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Reply to Madisoncuckoo7
Animallovers Apr 18, 2024
My 92 yr old mother has add and I have the combo form add/adhd (though the hyperactivity is not as bad as most, I tend to just be very fidgety). I actually wish my mother had the hyperactive form! Falling may be a problem but the muscle atrophy from not moving also makes that more likely as well. As people have been saying the exercise is better than what my mother does, sitting in her recliner all day. Her caregivers are great at getting her to do things but it is hard work! She does have a weird sleep schedule however. My mother does not take the meds, I believe it was because it can also raise blood pressure. I don’t take them regularly, just when I need to focus, because of that as well but they help me enough that I feel it is worth it. I wish I could take them regularly however.
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Won't sit down - always on the go.

While I know this type of behaviour & have seen it many times (including this week) it can be hard to manage.

Dementia, ADHD, OCD, Anxiety or Delerium can all cause this agitation.

To me, whatever the cause, it's like the brain just needs the stimulation from endless motion. Maybe it is soothing somehow.. like the motion of a rocking chair.

I am wondering if fidget toys would provide satisfaction for her? Used to be in special education or special needs stores (often for kids with ADHD or Autism). I've seen in Kmart & other toy shops now.

I agree with Alva that even though falls are a risk, so is too much sitting. So if your wife can walk & enjoys it, I suppose let her. I agree it is hard when it seems she cannot register when she has tired out. Staff may not always pick up on the signs or if so, may be unable to redirect her.

Hopefully the Memory Care staff can add as much safety as they can.
- Being supervised in a day room where possible during the day
- Bed alarm to hear when she gets up at night.
- Bright coloured ribbons on her walker frame so she hopefully notices it more.

A wheelchair may provide a safe place to sit with some motion?
Need the bigwheels.type with rim, to allow self-propel. Also can lift the foot plates to 'walk' the feet along.

If there is an Occupational Therapist on staff this would be the person to ask - to come up with strategies & equipment.

I hope you find some information to help. Or maybe people to chat to who understand. All the best.
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Reply to Beatty

Yes, take her off the ADHD meds. When my son took them it gave him insomnia, changed his mood to somber and killed his appetite. Once she's off those meds, see how it goes. If her pacing behavior doesn't improve I would consult with her doc regarding other med options. 7pm is too early to go to bed but I understand she is exhausted from the pacing. Start by taking her off her ADHD meds and go from there.
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Reply to Geaton777
JoAnn29 Apr 12, 2024
It did not effect my grandson mood wise. My daughter chose to only give him enough to get him thru school. It started wearing off at 6pm. He slept OK. He did lose his appetite but that was only temporary.
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The instability of gait and balance are almost certainly as a result of the failure in the brain. Balance goes in even normal aging process, and with dementia is goes really quickly.

As far as her ASHD it is GOOD for her to be up and about much as possible, so I wouldn't worry about that. It's excellent for her blood circulation and prevention of clots in blood vessels.

It sounds to me like things are going well as they can be. You understand that with hospice she is now on end of life care. I would allow her to move about while she can. Might this mean a fall? Perhaps. But at this point bedrest is a much worse danger for her than a fall.
I surely do wish you the very best. What a long time together.
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Reply to AlvaDeer
Anxietynacy Apr 11, 2024
Good point about the bed rest and falling risk, Alva 🙂
The way you know someone does not have ADHD is because the medication does not work on them. The meds are a stimulant and on those who have ADHD it works the opposite by calming them down. A person who does not have ADHD gets high.

Everything you have written is how a Dementia works. Its part of the desease. Her brain is being effected and she may no longer have ADHD.
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Reply to JoAnn29
Anxietynacy Apr 11, 2024
Could also be anxiety and maybe OCD?
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