When my mother & I decided to move our Aunt with dementia into our home, we had no idea what we were getting into. Only what we read about dementia during our research. I didn't spend much time with my great aunt as a kid, but when I did I always remember her being kind. Never had any issues with her. I'm 30, my mother is 54, and my great aunt is 82. Three generations under one roof (pretty cool).
When my aunt first got here a few months ago it was a little overwhelming, but manageable. However the more comfortable she has gotten, the more she has started to show a lot of negative behaviors. Some of them may be related to dementia, but many of them are behaviors she's had for 40+ years & aren't caused by her dementia (maybe made worse by the dementia).
She has a terrible, CONSTANT, habit of skin picking. This is one of the habits she's had her entire life. But now a days she just picks herself to death. She's got scars all over her body from a lifetime of picking. From the time she wakes up, til the time she goes to bed, and THEN MORE while she's falling asleep. It NEVER ends. We've tried to lotion technique, she still picks. Beyond putting mittens on her hands so she can't pick, idk what to do. I'm concerned she will get an infection. Not to mention having piles of her blood and skin flakes that I have to clean & vacuum off the floor and furniture daily. It's annoying & disgusting at this point.
Another habit she has is constantly blowing her nose. I mean, every 10 minutes. No exaggeration. Doesn't matter if we're all sitting down to eat a meal, she just does these long, drawn out, wet slimy nose blows & it makes me nauseated. I've had to resort to eating my meals in my room so I don't have my appetite ruined daily. Which makes me feel guilty because I don't want her to have to eat meals alone. But I can't miss another meal due to being grossed out the entire time I'm trying to eat.
Another habit she has is, constantly leaning forward when she's reading a paper or doing a crossword, which makes her nose run even more, & causes her to slurp. Big long wet slurps every couple minutes. She doesn't have a drooling problem. She is in very early stages of dementia & is essentially normal most of the time. So these habits are her own & not caused by her illness. Again, possibly made worse by the illness, but the illness isn't causing it. If you try to suggest she sit up so she doesn't hurt her neck, she just gets mad or cries. I say things so gently, very soft & kind because I don't want to upset her. But it doesn't matter, you can't say anything to her.
She has many other habits, but the last major one ill mention is talking to herself. Again, she has always done this. This is not new. When she first got here a few months ago she would mumble to herself here & there. Make jokes about how she talks to herself. No big deal. But as time went on she started doing it more and more, & it went from a mumble to just speaking loudly. ALL DAY. I never said anything to her about it because I don't want to judge her. But it's gotten to the point where I'm listening to her voice 24 hours a day. I can't even watch TV without her sitting there talking loudly to herself. Which she is aware of because she jokes about it frequently. I finally paused the TV the other day & said "Aunt Rosie, can you please quiet down while I'm watching TV?". She acted like she didn't know what I was talking about. So I told her, again, she was talking to herself & I was having trouble hearing the TV. So she slams her food down on her plate says "I just won't do anything then!" And started mumbling about how I was mean. Then sat there & cried for two hours. All because I politely asked her to quiet down so we could watch TV. I think she's got pre existing mental illness, it runs in my family. I don't want to live like this. I don't want to walk on eggshells. I don't want to be driven mad & then made to feel guilty when I make a simple request.
Either she needs to move or you, that is just that simple.
Has there been any discussion of her moving into a senior development, possibly section 8, if she has limited funds.
IMO 3 women living under one roof is a recipe for disaster, but that is just my opinion as I would never ever consider it.
Good Luck!
I have lived in very humid climates for years, and now live in the desert for last 20+ years. All climates have weeds and grasses I am allergic to, and if I don't take medication for allergies to grasses and weeds, I will constantly sniffle. Yes, it does get gruesome, my husband said so. But he still loved me!!! Have her tested for allergies, i.e., DUST, weeds, grasses, trees, bushes, flowers, all can cause her symptoms. powdered soaps (like laundry soaps), too. Otherwise, learn to live with it, endure, too. What are the alternatives?? When she's gone, you'll wish you were more tolerant!!
If your aunt has nonallergic rhinitis, the treatment is Atrovent (ipratropium bromide), a simple nasal spray that works like a charm. If your aunt has allergic rhinitis, Flonase is a godsend. It's another simple nasal spray. It is not unusual for a person to have both kinds of runny nose at the same time.
Your aunt should not fear the spray at all--it's a gentle mist, not a stream of water. She can spray the mist, and then give it a good strong inhale.
Good luck with this.
She Can’t.
Recognize that she doesn’t have much control over her behaviors. And you can not reason with a broken brain.
Some things you mention, like not eating with her because it is nauseating. But you feel badly that she is eating alone. You can eat separately. Then, go sit with her while she eats, so she is not alone.
If you can’t watch tv because she is making too much noise, go watch tv in another room. I do this a lot.
And when you feel your anxiety or irritation level rising, leave the room for a while.
Go outside, take a walk, find another room where you can find some peace for yourself.
This is what I do. My husband grunts, growls, groans, and yells out repeatedly – for hours at a time. And he fights me while I’m providing personal cares. Like CaringinVA mentioned. If I can’t keep my patience, I simply leave the room. He can stay undiapered for a while. He can stay sitting up in his wheelchair, waiting for me to help him in to his recliner or bed, or push to another room, until I am ready to deal with him again.
When I am beyond frustrated, I find it helpful to read articles by professionals regarding dementia behaviors, and how best to deal with them. It always helps my perspective, so I am less quick to anger.
Trade off with your mother, giving each other a break when needed. I wish you and your mother well. It is not easy. And there may be a point when it is time for the aunt to go into a care facility which is better equipped to manage her issues.
This is part of dementia.
I would advise you to discuss these behaviors with your aunt's MD.
Find out what kind of dementia she has; and if the MD will / has officially diagnosed her with dementia - this w/c/ould help with placement or managing legal needs - now and moving forward.
* She might do 'better' with some medication although meds have side effects.
Ask MD about.
* Expect these behaviors to continue and adjust yourself accordingly, i.e., observe and then let it go. If it becomes an issue for you / your family, you may need to consider placement.
* Investigate / research placement options now - for whenever this need may occur. Check costs and check her medicaid / medi-care (all govt medical benefits) that she might be entitled to.
- As needed hire a medical social worker or someone knowledgable in these areas to help you navigate. It is a whirlwind of a process and very time consuming.
* Do NOT wait until she needs more / other care before taking steps to consider her APPROACHING (or current) placement needs. As is said "you'll be up SH-T Creek without a paddle" if you are not proactive now.
* Hire caregivers as needed to give yourself respites.
This is a very difficult situation you are in and it will continue / progress.
99% of people / family that take on these (heartfelt) family-elder care responsibilities likely DO NOT know what they are getting into until they are in it.
Learn / realize that you can be BOTH CONCURRENTLY compassionate and take actions that will benefit you/r family as well as your aunt. When you realize 'its time' for a change (living situation), you are not being 'mean,' you are showing compassionate care and concern.
These decisions are not easy.
You have done good to this point and commend yourself on that.
You have a good heart. No one wants to see this decline and the ramifications on the family - it is hard and heartbreaking. Still, do what you need to do for your immediately family, and certainly including yourself, for your well-being.
You cannot do it all at a certain point. You may be at that point. As well, she may be at that point, too, needed 24/7 care in a facility.
Gena / Touch Matters
Too much togetherness can be smothering and we start to notice habits even more. Take breaks to avoid the monotony.
Does your aunt have allergies? The skin picking sounds awful. Has she tried getting relief from meds?
You could wear earbuds and listen to music as a distraction. Buy headphones to use for your tv if needed.
Sorry that you have this problem. Sadly, many people are going through the same issues that you are.
Take care. Wishing you all the best.
Which was kind of funny, when I got the store of him and his girlfriend kissing, and he blew in her mouth.
He is now much better, unmedicated as long as he can keep his stress down.
But I feel your pain, it's hard to hear it all the time, and you hurt for them.
When his friends would bug him to go to the movies, and stuff like that
As far as the (bedridden) elder LO that I am caring for, her habit is more of a behavior that gets under my skin if I let it. she is a very pleasant person, mostly easy to care for. However, when she gets defiant with us or a caregiver when we are trying to get her changed and cleaned up, I feel the frustration rise in me quickly. I have to leave the room for a moment or defer to my hubby or BIL to deal with her. We are already tired at the end of the day (when it is most likely to happen) and I just want her to get cleaned up and ready for bed. She has threatened to call the police for elder abuse (really?) AS we are wiping her behind and giving her the best care in OUR home that we can. Mercy! I just tell her that we are doing this to keep her healthy, clean and comfortable. She settles down when one of her sons redirects her, so it doesn't last long. But I can feel my blood pressure rise when it does!
Nobody can possibly understand what it's like to care for an elder suffering from dementia until they live the experience. It sounds like Aunt Rosie is much further along with her dementia than you realize, based on her behaviors. Untreated mental illness disorders also seem to turn into dementia, I've noticed, as it did with my mother, and intensify lifelong annoying behaviors significantly.
Awhile ago, I wrote a post here about a drug free way to stop skin picking disorders on the spot. Here is the link to that post:
https://www.agingcare.com/discussions/skin-picking-with-dementiaalzheimers-how-to-stop-it-without-drugs-479144.htm?orderby=recent
I had my mother placed in Memory Care Assisted Living for about 3 years until she passed at 95 in 2022. There was no way I was capable or willing to care for her at home, it would not have worked out because it'd have ruined MY life. My mother was extremely difficult on a good day, and the Dementia behaviors had her treating me in a nasty way. Your aunt crying for hours over being asked to stop talking while watching tv underlines the difficulty of trying to deal with her. At the very least, call her doctor and discuss an antidepressant and anti anxiety meds. If she wants to enjoy the privilege of living with you, SHE will have to make some compromises herself such as meds and the nail polish discussed in the post I linked you to, or this arrangement is not going to fly.
Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with your aunt in an effective manner.
Wishing you the best of luck with a difficult situation.
Is anyone her PoA? If so, this person now needs to read the document to see what activates the authority. Usually it is 1 or 2 medical diagnoses of cognitive impairment. This person (assuming they have MPoA) should take your Great Aunt to get a cognitive test. At that point her MPoA can discuss with her doctor what to do about the skin picking (and maybe the nose-blowing).
Her talking to herself can be a dementia behavior and I don't think there's a solution for it, but others may have suggestions.
Since dementia is a progressive disease for which there is no real treatment or cure, you may want to consider researching facilities for your Great Aunt. If no one is her PoA then this at some point may become a problem if she doesn't voluntarily choose to go into AL. She may require guardianship by family or the county and then there'd be a legal way to get her transitioned, even if she resists.
Please consider watching some Teepa Snow videos on YouTube. She has many videos discussing caregiver strategies to deal with LOs who have dementia so they can have as peaceful and productive interactions as possible. Dementia is a terrible disease that impacts not only the person who has it but those who are struggling to provide care for them. The more you know, the better. I wish you all the best as you figure out your roles in helping her.