recent fall, dementia diagnosis, close quarters

pookabera · August 2023

Hi everyone! I think this is going to be a spilling-my-guts sort of post and hoping to get some insight.

Some brief context: we have suspected my dad (83) has had some cognitive decline for years, but he stopped going to the doctor in 2019 and has refused since (to the point of blow-up arguments when we pushed). He lives with my Mom and my nephew.

At the end of June this year, he fell and broke his hip. He has been unsteady on his feet for a while now and it felt like we were playing a waiting game because he has been so adverse to any sort of assistance (refused a walker, refused a shower seat, refused hearing aids, etc.).

He was clearly exhibiting delirium in the ER, pre-op, post-op, etc. and while in the ER a doctor stated that they were diagnosing him with dementia. I believe this was solely based on a verbal cognitive assessment and (frustratingly) there has been no specific diagnosis yet. He is also VERY hard-of-hearing and hears best on his right side - this has been a consistent contention in which I am constantly reminding and informing medical staff that yes, he's been diagnosed with dementia, but he's not responding because he can't hear you, not as a symptom of his dementia.

He was in a subacute rehab facility for about a month and was not consistently participating in PT and OT and my mom and I felt that his mental health and cognition were declining (high patient to staff number, high aide turnover, his general disposition of being crotchety, we were only able to visit once a day, etc etc). He vacillated between wanting to live "wherever my mom's property is" (his house, which he couldn't remember at the time) or wanting to leave the state and never see us again. We eventually made the decision to bring him home and try homecare services.

The things my mom and I were worried about (him being in a different room in the house than he was before, being in a "hospital" bed, him trying to get out of bed) have all been non-issues so far. He recognized the road when I pulled onto it the day I brought him home and said he was happy to be home. He has been eating better for us than he was at the SAR, his mood swings seem to be shorter than they were before, and my mom and I are able to spend more time with him when we're off work (I live about 10 minutes away from their house and my boss has been flexible in letting me work from home).

I believe he's at the middle stage of dementia, however his baseline has improved slightly since returning home (while in rehab he couldn't remember what city the house is in, couldn't remember that he and my mom live together, or that I live in his parents' house now, for example).

I bought about ten books about dementia, Alzheimers, home caregiving, etc (I'm a little neurotic haha) to educate myself and help my mom (and dad) in any way possible. I feel like we have a pretty good grasp on the way to approach things (gently, calmly, giving him space as needed, showing affection), but there are some things about his behavior that are really challenging us.

I think I'm going to list them below (for posterity and in case anyone has advice or experience with something similar)

1. His pre-dementia/aging hobbies were things he's not capable of doing now. He used to go for drives, but he stopped driving in 2019. He used to take care of the lawn, but he stopped mowing the lawn around 2020 and is generally somewhat adverse to being outside. Before he retired in 2000, he worked all the time. So it's difficult for us to keep him occupied.

He also enjoys watching movies, but it's a challenge to figure out what movie he might possibly want to watch at any given moment. And if it's not that movie, he'll get upset and be (what I refer to as) "out-of-sorts".

2. He is currently unable to walk. We are going to try PT and OT at home to hopefully help him become more mobile. He's able to transfer to his wheelchair and to the bedside commode we bought, but that's it as of right now. At this stage, he's at least aware that he can't walk but we worry that as the dementia progresses he'll be more likely to try to get up and fall.

3. Because of this concern and wanting to be able to attend to his needs and hear him if he needs something, we moved him into the bedroom across from my mom's. Previously, they didn't sleep in the same room or end of the house (he preferred sleeping in the recliner). We leave the door to his bedroom open and have the bed facing the doorway so he can see us and we can see him. When he's Good, this is good. When he's Bad, this is truly awful.

4. This is the biggest behavioral challenge we're having right now, and I might make a separate discussion post for it. He talks and narrates CONSTANTLY when he's "sleeping"/"resting". He's always been the type of person to murmur to themselves, but this has reached a new height. It is audible in my mom's room, the living room, and the kitchen. It was helpful when he first got home because we'd hear if he commented on the temperature of the room, or if he was going to use his urinal, or if he needed a snack.

However, it has become X-rated. And it's constant. Starting from about 10:30PM-whenever he finally falls completely asleep and then from about 9AM (or earlier)-4PM, if he's awake he's talking constantly. It's derogatory and abusive language (and the severity of how bad it is gets worse at night). And neither my mom nor I are shrinking violets, it is honestly and truly bad.

If he sees me walk through the living room or if I go to check on him when he's in one of those moods, he'll make comments about not wanting me in the house as soon as I'm out of sight (which is fine, I'm still going to be here to help my mom).

We understand that it could be boredom, depression, loneliness, something that brings him comfort, etc (the whole look at the emotion not the behavior thing). But he's not interested in anything else. We'll offer to turn the TV back on or open the curtains and he'll say that he's sleeping.

If he says something and one of us goes in to check on him (and reference what he's said) he'll say that he's sleeping or about to fall asleep or just relaxing.

But when he "wakes up" it's like he's a completely different person. He'll be friendly and chatty and want to ask me about my day, my house, my husband, how the weather is, tell us stories, and on and on for a few hours until he feels it's time for bed and wants the TV off. And then it all starts up again.

5. How does one coordinate a care team? The social worker at SAR was, unfortunately, not reliable (or at least, I felt I could not rely on her). We're interested in private duty nursing or respite care, but the homecare agency we've hired only has one PDN that's available in the area.

Is there option where it's staff we can call and say, "Hey, we are EXHAUSTED, do you have someone who can come out and sit with him overnight?"

Should I be working to coordinate this with the homecare agency's social worker? Do they coordinate care teams?

I just feel like we have so, so much up in the air still that we're trying to get settled while also trying to settle into our new routine and overall Life Situation.

Who do we lean on? My mom and I are very independent and tend to be the Coordinators and Matriarch type of people.

If you made it this far: thank you for reading all of this. It's been building for almost 3 months now and I figured it was time to start reaching out to those who are also Going Through It.

M1 · August 2023

Welcome to the forum. Sounds like it's been a tough three months. Two thoughts: if he's not walking three months after a broken hip, the chances of his walking again are very small. The dementia and the hearing loss are both going to make it very hard if not impossible for him to participate in or benefit from any therapy. Not to say you can't try, but I wouldn't get your hopes up. So: I would either: ask for a Hospice evaluation; you have nothing to lose by doing so, and if he qualifies they will provide a lot of help, including medications that should help the agitation at night (nothing short of medication is going to help that). If not hospice, find a palliative care practice that makes house calls, and they can potentially prescribe for him too.

MN Chickadee · August 2023

I would second getting a hospice evaluation and looking at meds to help the disturbing behaviors. Though some of the chatter you may have to tune out. Perhaps you could have a nanny cam in his room and be able to turn on some white noise for yourself or put on some headphones to tune it out to get a break from it? Hospice does not provide day to day care like sitting with him for hours but the nurse will check in with you as often as is needed, they will send an aide to help bathe him twice a week, and they have other services/employees and provide all medical equipment. They can manage his meds, are availab le 24/7 and can help guide you to what you need and make his days as comfortable as possible.

In terms of things to occupy him it sounds like it will have to be simple things to do with his hands. My mom with Alz loved things to fidget with. They make a ton of fidget toys now, the kids love them and so did my mom. Target or Amazon has many options. Toys for adults with dementia also exist like boxes with latches and compartments. I also bought her a couple fidget blankets off Etsy. She was into repetitive motions. She liked sorting things. I would give her a big tin of buttons to sort by color. Perhaps a box of screws and bolts to sort if he is into that? She would fold washcloths and I would dump them when she wasn't looking and she would start over. She loved her robotic cat (Joy for All brand) and if that was in her lap she would sit still and pet it. Also simple childrens books since she didn't really read, just look at pictures. You could probably find some that may align with his interests (cars, trains, animals etc.) She also liked paging through old photos. I made copies of family photos from her childhood through current time and she would spend time messing with a box of those for hours. They will get destroyed and tattered so copies are best.

As for getting some help in the home you could look at Care.com and find an individual that way for respite or scheduled hours. Most agencies have minimum hours and rules and can be a bit inflexible. You might also try job boards and any colleges near you that have social work or nursing programs; a student might want some experience in the field and be willing to sit with him a few hours a day.

And my last bit of advice is to remember this won't last forever. The challenging times can feel like it will never end and you can't take another day, but soon his condition will change. Dementia will progress and it sounds like he is later stage. Sure you might be met with new challenges but the ones you are dealing with today will end before you know it. Good luck and keep us posted.

ButterflyWings · August 2023

Excellent feedback.

Here are all the links for caregivers, on this site's AlzConnected Resources "Solutions Center" page.

Resources for Caregivers

pookabera · August 2023

Hi y'all, thought I would put a quick update here. First, thank you for the advice and recommendations, it has truly helped ease my nerves and help me do some brainstorming and problem-solving.

The fixation is still the same, currently working-from-home in my parents' kitchen on Dad Duty so my Mom can also get her work done.

We're hoping to hear from the visiting physician soon, I'm hoping we can try some sort of sleep/other medication to help him rest at night. I think that when he doesn't sleep and is doing the chatter all night that he stays in that state for longer throughout the day. Also not sure he's getting much good sleep in any case.

Beyond meds, I did buy him a muscle car book to flip through, it came in the mail today but he's currently not interested in anything other than his body.

In the evening after work, my Mom and I go into his room to watch movies with him and one of us will sit in his bed with him. When he's amicable to it, we'll get him into his wheelchair for lunch and/or dinner. But the chair isn't comfortable for him, so I'm still researching lift recliners for him.

An interesting update: the physical therapist was here last week for the initial eval and my dad got up with the walker and walked... probably 20+ steps from the bed into the living room and back again. I did not expect him to even be able to stand let alone motor around the house for a little bit.

I also chatted with a nonmedical homecare group last week and got some helpful information. Still keeping that on hold -- if he can get help with sleeping at night that will help immensely.

Hoping that things will be settled a bit more when it's time for me to start heading back into the office.

recent fall, dementia diagnosis, close quarters

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