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I have been reading many posts over the last couple of weeks and today is the first time I am posting my own question. I am the FT caregiver to my 86 year old mom who has vascular dementia. This was a new diagnosis just before everything went into lockdown from Covid. And, like many others, her condition has been on a downward spiral ever since. I'm trying my best to keep her safe from virus exposure but at the same time, being cooped up all the time has really taken it's toll on her. We take her for drives, outdoor plant shopping, basic things like haircuts etc. but with the senior centers being closed, she has lost out on the interacting and phone calls don't seem to help very much. Each day is a surprising challenge. She has major sundowning hallucination/delusion issues and has difficulty sleeping through the night. She is often up and about around 1am when "visitors" are always in her room bothering her. She might be agitated and angry with us one day because it is our fault these "people" keep coming to her room every night or hysterically crying because she feels so sad. Sometimes we get both in one day. Her doctor explained to her that our minds play tricks on us when our brains get overwhelmed and tired and she just gets "outraged" that anyone can say she has dementia and that that is the cause of any of this. She has also woven impressively intricate stories to make sense of the hallucinations and her detailed explanations are absolutely incredible! She also had high anxiety for most of her life and that has only intensified with the dementia, making everything that much more challenging. We are working on medications and dosages to get her to sleep, alleviate anxiety etc. but what works one day, does not the next. We have tried all the suggestions and nothing seems to work. Redirecting leads to "you didn't answer my question" or "why are you ignoring what I said." My husband and I have to switch off our schedules so that someone can be with her at all times. I work PT and can at least flex during off hours and on weekends when my husband is home. He works FT but they are very understanding of our situation so he can be home some mornings if I need to be out. We are trying to get a caregiver for a few hours a week so we can take care of necessities and our own doctor's appointments without one of us having to stay home from work. Of course this has proven extremely challenging during the pandemic, not to mention her fighting even needing a caregiver every step of the way - "I'm fine staying home by myself!" Respite? Yeah, right. I am open to all advice and suggestions. I'm trying to do the right thing as a daughter but every single day is a test of my own character, patience (short end when they doled that out) and sanity. My husband? I'm not sure how many men out there could do this for a MIL but there is no way I could do this without him!!!

Imho, I hear you on the hallucinogenic images and stories. At the end of my mother's life, she "saw" a body sleeping on the floor of her room. Also the person in the Nursing Home bed hopped out of his bed to "assist' her because that was his job and then went back to his hotel. C'mon - best seller novel. Praying for you.
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cgblues Jun 11, 2020
The stories they put together - you LITERALLY couldn't make this stuff up!!! I had read in one of the posts that you should try and turn things around and find a way to smile or chuckle about it. We've been working on it and I must say it does help. It's way better than feeling frustrated or irritated, especially if you get accused of doing/saying something that literally never happened. Thanks for your reply. It totally made me chuckle because it sounds like a story my mother would tell!
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CGBlues, it looks like you have really been dealing with a lot with your mother. It can really be challenging.

I encountered some of that behavior with my LO, who also has Vascular Dementia. (Later thought to be mixed with Alzheimers.) Based on what I have observed, the symptoms may fluctuate and sometimes, things seem not so bad, but, then they are again. What I learned was to let go of trying to be right or prove any point. I just tried to placate her on all things, within reason. So, there would be no reason to mention dementia. I avoided anything that would upset her. After her Primary and neurologists told her it was dementia, that was it. There was no reason to convince her that's what she had. Either it would have scared her more, angered her or she would have forgotten it. So, that was it. I only encouraged her, told he she was fine, no one has a perfect memory or bladder and that was it. STILL, she suffered worrying, crying, and obsessing over many things. Her doctor prescribed Cymbalta, which is daily med for anxiety, depression and pain. It was almost a miracle. It greatly reduced her mental distress. Later, she took a little Seroquel at night. Xanax didn't help her that much.

Most of my LO's care was at AL and then MC. Still, I saw a lot of behavior that, even with medication, is common in people with dementia. Many patients are insistent, resistant, and relentless in their accusations and protests. I think that's the nature of this illness and there may not be a remedy, besides time and patience. Eventually, those traits left, but, they are met with new things, like incontinence, immobility, sleep disorders etc. So, there always seems to be something that is a challenge. Now, my LO is nonverbal and bedbound.

I hope you can find some help. Getting a break will be crucial for your and your DH.
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cgblues Jun 10, 2020
Hi Sunnygirl. I'm sorry to hear about your LO. I know from the reading I've done and conversations I've had with the doctors that our future will most likely have a similar outcome.

I wish I had some of the calm and patience you seem to have. I know it's a waste of time and energy to try and rationalize with someone who has dementia. I'm actually okay when it comes to things she doesn't remember or can't figure out - every day she does something to her remote or phone that I wouldn't even be able to duplicate! It's the accusations that are the toughest for me to swallow. When she says I did this, or my husband did that. Often she has created incredible story lines starring one of us and NOT in a good way. Those are the things that get to me even though I know it's the illness. I feel like saying "we are the only two people in the world killing ourselves trying to take care of you and this is what you think?!?!" My mom used to be a super sharp woman, busy savvy and full of common sense so to see her like this is so shocking it is almost a surreal experience.

I'm so glad I found this forum. It's like a little therapy every time I log in and can get help and advice anytime I need it.

Thank you for your response and I wish you and your LO some peace...
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You’re not alone, dear. I swear that your posting sounds like what I’m going through, as well. My mom’s nightly visitors range from little kids to deceased family members. And the deceased family members tend to visit at midnight. It drives me crazy! Sometimes, I just yell and tell them that visiting hours are during the day only and everyone needs to go now! LOL. My mom’s sleeping patterns change nightly. Some nights, she’s fully awake until 4:00 am—even with lots of medication. I’ve tried every bit of advice from others. But each day/night is totally different. What worked last night may not work tonight. I’m a creature of routine and predictability so I like knowing that if you do x, then you’ll produce y. Dementia doesn’t always work that way though. Hire caregivers who can help shoulder some of the responsibility. Really good aides are out there, but also very lazy ones who may be more of a hindrance than a help. I pray for patience every chance I get, but some days I’m short on it from lack of rest and sleep. I’m trying to just take 1 day at a time. This is a season that I’m going through and one day, it will be over. For now, I just keep patiently praying. This forum is an excellent source for advise and just to vent. Big hug 🤗.
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cgblues Jun 10, 2020
Hi LoveLea - we are totally going through a parallel phase! "Our" two kids who visit (a boy and girl) suddenly had parents and now even extended family! Mom also often sees her mother and asks me almost daily if I saw grandma before she left. My grandmother passed away over 30 years ago. Sometimes even I get confused because the two kids have a grandmother as well so I'm never quite sure which one she is talking about at the time!

I used to love the end of my day - time to unwind and relax and now it's when I find myself the most anxious because I'm not sure what kind of night it will be.

Her delusions and hallucinations used to be exclusively at night and the next day she would talk about the visitors but now they are happening during the day as well. We are often roped into them. Either I or my husband was upstairs talking to one of them or she saw my husband luring the kids to the house with crackers and sending them to her room to bother her. Then she gives us the cold shoulder since it's our fault they are coming to her room and we won't do anything about it.

Does your mom tell anyone else about her visitors? Everyone who talks to my mom would never know she had dementia. Maybe some confusion or forgetfulness, typical of being elderly. It's like a part of her "knows" something is off and she's able to keep those thoughts to herself. With us, it is open season and we get to share ALL OF IT with her!

I'm with you. Patience is so hard to come by when you are rest and sleep deprived. There is just no real break, no moment to be able to sit and breathe. Like you, we take it one day at a time because there is not much more you can do when each day is so unpredictable. But it is what we are doing today and it won't be forever.

Thank you for sharing your story with me. It is comforting to know we are not alone in this.
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You’re so lucky & blessed to have an understanding husband. I’m primary caregiver to my 93 yo mother with dementia. I have private pay caregiver for 25 hrs a week. I worked P/T before plague. I live with mother, not married , no children..just a brother and 2 nephews. No help from anyone but my private pay caregiver. My mother at times is violent..she can’t walk or stand. She’s incontinent. We use stand assist lift. She stays on middle level. We have a stairlift. She now goes out once a week for an hour right outside house to get sunshine. Your mother doesn’t need entertainment committees...only to be safe, clean & fed food & water until the time she refuses. Also her meds ...You have to begin thinking of yourself first. Oh, and btw, my mother thinks she is fully independent & can do everything for herself. She does nothing for herself because she can’t. Hugs 🤗
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cgblues Jun 10, 2020
CaregiverL - amazing how they think they are fully independent! My mother says she would be fine at home by herself and doesn't need any help. Uh, really? I'm sorry to hear you are dealing with this alone but glad you at least have a caregiver to help you out. It is literally a 24/7 role and seriously, it almost takes THREE adults so that there are a constant set of eyes and ears open at all times and to be ready at a moment's notice. I often say I cannot believe it's possible to be this burned out then I think, wait, it IS possible! Sending hugs back your way. This is what our lives look like now but it won't always be this hard...
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My mother has and my MIL had ALZ dementia. But my FIL who died 3 weeks ago, had vascular dementia. That was really hard. He had impairment of executive functioning like problem solving, reasoning and judgment. He seemed fine to a lot of people. He could make conversation, enjoyed activities and was mostly pleasant. But he had not just hallucinations but delusions with very vivid interactions with people who weren’t there. They mostly took the form of people who wanted to hurt or attack him. He was in WWII as a submarine hunter so he thought that a submarine was under his bed trying to kill him. He was frightened and no amount of explaining worked. He loved all things military and loved old war movies but he could no longer watch them because he could not tell the difference between fantasy and reality. The news video would scare him. He was living in memory care. We had psych see him. He was already on Lexapro and they put him on an antipsychotic med, Abilify. It is not indicated for dementia so I was skeptical but it worked for the hallucinations and those vivid “dreams” mostly stopped. Vascular dementia progresses faster than ALZ so we saw changes much quicker in him. I am a retired nurse but I would not have wanted to care for him 24/7. I would have but they really did not want to live with us and my husband did not want that. In this time, it would be scary to think about placing someone in a facility. The inability to visit is very difficult. We did not see him for the past 2 months of his life. But you can look into facilities while you are waiting. I would look at memory care versus AL because they are better equipped to deal with the personality issues she is having now and which will get worse. This will be very much harder to manage than ALZ in my opinion. You and your husband sound like a great team.
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cgblues Jun 9, 2020
Hi dogparkmomma. Thank you for all the great information!

I'm very sorry to hear about your FIL, especially since you guys never got to see him for the past couple of months. I know Covid is making a huge impact around the world, but it has had a very painful impact on those with elderly family members. I wish you and your husband the best in caring for your mom.

It's interesting you mention the delusions your dad had related to being in WWII. Mom has some delusions we think are related to unresolved issues from her past. It really is quite amazing (and sometimes horrific) how the mind works and how quickly it can deteriorate. I had wondered if vascular dementia progresses faster but you can't quite get consistent information about it.

There has to be a part of mom that knows something is not right because she does not "show" this side to her when communicating with others. She talks about totally normal things. Then as soon as she is with us, she immediately starts talking about the "visitors" who are in her room daily (used to only be overnight but now they come during the day as well.) She has also concluded my husband and I must know them because she always hears us talking to them upstairs. And she gets very upset when she wants answers about them and we won't tell her because we're "trying to keep things from her." She has even gone so far as to include the neighbors into her delusions and says they are lying about their knowledge of them. Last evening, the two kids (frequent visitors) were in her room bothering her until their mom showed up and scolded them. And before they left, she saw their mom put something in her water when she smelled it, it was gasoline. She then got very mad at me and my husband because she doesn't understand why we don't just tell these people to stay out of our house. When she tries, they just won't listen! This morning, there was still residual anger towards us because we allow them to bother and harass her and we literally do nothing about it.

As for medications, she was on Respiridone which didn't seem to help so we switched her to Seroquel. It still doesn't seem to help with the delusions/hallucinations but the latest dosage does keep her in bed through the night. I know the anti-psychotics have the FDA black box warning for use with dementia patients but you do hear about some positive results of their use. We also give her a low dose of Ativan when she is very agitated. Finding the "right" medication and dosage has been quite frustrating.

While dealing with the dementia would be extremely stressful and exhausting on its own, the pandemic and closures have made it that much more unbearable because we don't have options without greatly exposing her risk of getting Covid. So we will continue to try and find a PT caregiver and take things from there. I'm hoping if/when things improve, we could try adult day care at a memory facility and have a chance to further expand our options.

Thanks again for your response!
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cg, it's so good that you and your husband are such a great team! My husband and I are doing the same with my mom, but she still lives in her own place. It's hard, and I can only imagine how it is for you two, but I salute you! I'm praying that you will both know just when to move her on to the next step, and that there will be no indecision or guilt.
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cgblues Jun 9, 2020
Thank you so much mally1. I wish you and your husband the same! It is so true what they say about parents eventually becoming the children. The role reversal can certainly be a challenge in itself!
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Respite care can be very helpful to your mental health, your marriage, etc. Of course your LO will not usually agree, but it's not for them, it's for YOU. If you need a break, arrange for it and do it, even though you know she will not be agreeable.

Getting help at home could be great for you as well. Since she thinks she can be alone, maybe hire someone to do things for YOU. Like cleaning and cooking, etc. Oh, and keep an eye on your mom (the caregivers actual first responsibility) while you step out to do something for yourself.

You are lucky to have a great husband who is willing to help, etc. My mother is no where near your mom's condition, yet, but she lives with us and my husband is soooo kind and helpful also. So lucky!
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cgblues Jun 8, 2020
Thank you! You are right about having to take a break even if your LO does not like the idea. I will tell you it took me a long time in caring for my mom over these years to get to a point where I don't feel guilty. It was a real challenge for me despite people telling me that I shouldn't feel guilty for wanting something so basic and normal - like being able to run errands without my phone blowing up with "when are you coming home? You said you would be home at 3:30" (it's 3:27 and I'm approaching the driveway). I have always called myself a work in progress but I think I've experienced enough challenges and the shift it's made in my perspective has been wonderfully refreshing for me.

We just have to work out finding the right caregiver during this pandemic!

You are fortunate to have a supportive husband too! Many times mine is the one who has to remind me it won't be this way forever and it will get better. BREATHE! And as worked up as we can both get, especially during horrible middle of the night episodes, we give each other a hug and say no matter what, we can't take it out on each other because we are in this together. I hope the same for you and your husband.
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Knowing your own personal “right thing as a daughter” is DEFINITELY NOT “a test of character”. Instead, it is determined from an HONEST AND OBJECTIVE ASSESSMENT of your own feelings, skills, triggers and previous experiences.

Some WONDERFUL human beings can take an objective look at themselves and realize that they are not cut out to provide a dependent LO with 24/7/365 care, and truthfully, I’ve known some pretty haphazard, seedy, disinterested folks who’ve come through to be very good caregivers indeed.

Don’t beat yourself up, especially since NOTHING right now is NORMAL or PREDICTABLE. Do some online research into local agencies and providers and see if there’s any respite service available. IF YOU CAN’T FIND SOMETHING RIGHT NOW, keep in mind that as the pandemic lifts a bit, you WILL at some point, have more options in this area of care.

FOR THE FUTURE, check out residential placements near you. You would certainly want to make visits to any you’d consider as a place for your mother, but just having the list will help you feel a bit more in control.

Give your husband and yourself the possibility of trying solutions with the assumption that your mother’s condition will be continually changing. As HER needs change, your solutions to dealing with them will need to change too.

Give yourselves “treats and breaks”. They’re good for you and your morale is important.

Visit here when you need to and ask questions. You’re not alone, even during a pandemic!
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cgblues Jun 8, 2020
Hi Ann,

Thank you very much for your response. My husband and I have had many discussions and go back and forth depending on what new "surprises" come up and the severity level of those surprises.

The caregiving company we are working with provides hourly care all the way up to 24hr live in care. We liked the idea of having that option with the same company rather than having to change companies as our needs become greater. The company is very responsible and only pairing one caregiver up per family to minimize any exposure to Covid, which I think is commendable. On the other hand, finding the right match for our situation is more challenging. As an alternate, we have looked into facilities in our area but that would be a last resort, especially as Covid cases continue to rise.

We try and stay as positive and hopeful as we can and find little things to make us laugh.

Thank you for your honest thoughts and support. They are greatly appreciated!
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How to handle constant behavior changes?! When you have a good answer to that ..you will never have to work another day in your life!

Go with the flow...
Answer questions, sometimes by posing your own question to hers (example..Why are those people in my room talking? your response might be..I don't know, why do you think they are there and what are they talking about. )
Try not to get upset or frustrated.
Don't raise your voice. As a matter of fact speak in a lower tone and more slowly and distinctly. Sometimes higher voice registers are difficult to hear.
Vascular Dementia can mean that she is having little clots that block another portion of the brain so a portion of the brain that was fine yesterday may not be tomorrow. So the only constant may be change.

Respite is important. For you as well as her.
Get a caregiver. But tell her it is someone to help YOU. The caregiver can come in and do some light housework for YOU and in the process quietly care for mom. The more she is there the more she can do for mom as mom gets used to having "the cleaning lady" there.

Prepare yourself...this can be a long journey. Are you prepared for this? Is the house set up that it will be safe for her? And for you to care for her?
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cgblues Jun 8, 2020
Funny you bring up "the cleaning lady" because she thinks that's what we have been interviewing...cleaning companies!!! She has even pitched an attitude saying if they don't do a good job, we're not paying!!!

I constantly read about not raising your voice, remaining calm and while I know this, and I mean really know this and hear myself saying it in my head all the time, frankly, it is so much easier said than done. Aside from the high anxiety, mom has a very strong and challenging personality. She's a handful even without the dementia. She was always non-stop and the dementia has only intensified her already difficult personality. So when I see this "side" to her personality in dementia format, I can't help but revert to the way it used to make me feel. I read in one post that someone said not to dwell on reacting poorly because it will do no good. Just accept it and move on...I am embracing that. And when she's just confused or can't remember things or hysterical and sad, I am calm. It's when the really high anxiety kicks in and she starts getting extremely agitated, irritated and starts damaging things that I find myself starting to come apart.

I find comfort that so many others experience the same thing but at the same time, horrified that so many of us are experiencing the same thing. And you are absolutely correct. The only constant is the change itself. It is certainly keeping us on our toes and has very quickly become our new norm.

We are prepared for this, perhaps faster that we every anticipated! The house is safe for her, we are implementing new camera sensors to alert us when she is up and about in the middle of the night as this is when her dementia really shines!

Thank you for taking the time to respond!
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Does Mom live with you or on her own? In either case, you are to be commended for your sacrifice. And your husband as well. Dementia is a horrific disease. There is no cure and each day brings more and more “behaviors” that are so difficult to deal with. Their brains are broken and deteriorating and there is no reasoning with them. As soon as you are done explaining something to them they forget what you said. You may need to make some difficult decisions. There is no predicting how long Mom will live. Living to 100 seems to be getting more and more common.

Most people on this forum agree that promising not to place a loved one in a facility is unreasonable. It requires great sacrifice of the people who made the promise. It can cause the caregiver to suffer serious health issues due to stress. It can cause divorce. To be frank, you and your husband need to sit down and discuss how long you can continue doing this. Look to the future and not the past. Are you willing to continue living this sort of life? It’s an extremely difficult decision to make, but kne you may need to make before you completely lose yourself and your marriage.
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cgblues Jun 8, 2020
Mom lives with us. She has for the past 5 1/2 years ever since my father passed away. We are taking things one day at a time. If we can get a caregiver in PT during the week, we are hoping that will give us a much needed break.

Her fast decline since the pandemic has forced my husband and I to face the reality of what is in front of us like a swift punch in the face. We are both very strong people and tend to have a very realistic view on life. We have discussed steps further down the path and have looked into FT care as well knowing that we will progress to that stage. We also aren't kidding ourselves about what we can and cannot handle. At this point, we are not ruling out any options and are constantly communicating. Luckily for us, we are on the same page about so many things and being in this together has strangely made us closer than ever even though we are more stressed out than we've probable ever been in our lives. I was the FT caregiver to my father when he was diagnosed with cancer and as heartbreaking as those two years were, they were nothing compared to what we are dealing with now.

Thank you for your truth!
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