Coping with dementia in loved one

[DesertBlossom]

We have been noticing some bizarre, paranoid behaviors in my dad for at least a year. A neurologist suspects Lewy Body disease. My dad was present when this was being discussed with the doctor but didn't have much to say about it. 

Going forward, how does one best talk through some of the behaviors? Or is it even worth talking through?  For example, he is insistent one sibling is stealing money from him and even when evidence is provided that shows otherwise, he always goes back to it. Always. He regularly wants to check his account balance now. Is it even remotely helpful to remind him that those paranoid feelings are a symptom of a disease? Is redirecting even possible? 

Understanding that his behaviors are a symptom of the disease and not just him does help one have patience with it. But it's still hard. And I know he is frustrated too.

[Scarlett]

It is hard for sure.  

Money was/is a big thing in my FIL's mind too that really keeps him agitated.  Always losing his wallet and then angrily accusing MIL of stealing it.  And worried that 'the kids' (all adults) will take the money away from MIL when he is gone. Sadly nothing much works and sometimes he just melts down over that or any number of other things.  Redirect when you can.  Repeat the facts often.  

I am sorry.

 

[DesertBlossom]

Thank you. It is hard. It's also hard when he accuses us of treating him like a child when we don't give him his way. But there are some things he insists on that we just can't do. And it's hard.

[prairiewindmomma]

IME, you can’t logic your way out of the paranoia. IME, the paranoia is driven by an emotional feeling that something is missing, and they feel insecure because of that feeling, and their mind tries to latch onto a reason why...

[prairiewindmomma]

You are in the hardest part, imo. As the dementia worsens things will get easier... They will not realize that they are not tethered to reality. This in between place is hard.

 

[Scarlett]

13 minutes ago, prairiewindmomma said:

You are in the hardest part, imo. As the dementia worsens things will get easier... They will not realize that they are not tethered to reality. This in between place is hard.

 

Yes I agree this is the hardest part.  

[athena1277]

My dad had Parkinson’s with Lewy Body.  My fil has Parkinson’s also, and I suspect Lewy Body, but the doctor hasn’t said so officially.

It is hard.  Hard on them and hard on the caretakers.  My dad passed away earlier this year.  During the last 1.5 years of his life, I had to make several trips to help my mom during transitions as he got worse.  She was working and needed help when he got worse, because sometimes it took a few days to get needed services in place, such as adult day care.

Obsessing over certain things is common.  It can be very frustrating for the caregiver because they keep harping on it incessantly.  It’s worse than 3yo’s constantly asking, “but why?”  
 

The hardest thing, in my opinion, with my dad’s care was that he forgot what his physical limitations were.  He fell a lot because he thought he could still get up and walk around normally, when he needed to use a walker or wheelchair.  Several times when visiting I would be trying to cook supper so it would be ready to eat when my mom got home from work, but I kept having to stop because he kept getting up.  I finally told my then 11yo son that he could play extra Minecraft if he would sit nearby and remind my dad not to get up or get me if he did.

OP, I am so sorry you are going through this.  Dementia in any form is horrible.

[gardenmom5]

mil developed paranoia.  she went from being very social, to being afraid she was being spied upon.  accusing a neighbor etc.  (the trees lost their leaves because it's fall, they're still there.)  one night she called the cops claiming someone stuck a gun through her door.  sil ended up putting her in a nursing home because she was starting to require too much care and supervision for her to give.  (she lived in an attached 'apartment' at sil's house.)  she had a lot of physical decline that paralleled the mental decline.

[DesertBlossom]

54 minutes ago, prairiewindmomma said:

You are in the hardest part, imo. As the dementia worsens things will get easier... They will not realize that they are not tethered to reality. This in between place is hard.

 

Even before an official diagnosis, I have felt this. Telling him he can't drive or can't live alone or can't call and harass the lady down the street (for reals) is hard when he is still mostly lucid. He gets frustrated because I don't drop everything I am doing to look for a pan he is certain somebody stole, when he's not doing any cooking anymore and I know no one stole it. He moved in with a sibling about 6 months and he still doesn't think he needs that. He was back at his house recently (he likes to go over there to make sure we aren't selling it out from under him) and he refused to go back to my sister's house. It took them a couple hours to convince him to leave. 

It feels harder because he is still mostly the dad that I remember, but not enough so to be making most of his own decisions.

[Scarlett]

8 minutes ago, Patty Joanna said:

Echoing Seasider.  And adding that our experience with a different kind of dementia was that the people had essentially entered an alternative universe.  The rules we know no longer apply.  

My great aunt was calm (not normal: calm) as long as the house she lived in was left exactly as it had been when she was a girl, when her father built it.  Put the dishes back where they belonged (in 1940) and she could function.  Get a new blender, and you might as well live inside it and push "puree".

My FIL was in and out of this decade.  He woke up one night to find an old woman in his bed and kicked her out.  It was his wife, my MIL, but HE was living in 1960, and THEN, he had a young bride and how dare this old woman get in his bed????  Not calm.  Also in his alternate universe the rules about polite language didn't exist.  So my FIL who never said a swear word in his life is suddenly swearing like a sailor.  Alternate universe. 

We kind of had to see ourselves as ambassadors between two planets, diplomats--not truth tellers or judges or legislators.  

Yes it is mind boggling.  Very hard to deal with, especially when you are family and emotionally involved....The last time I saw FIL he asked me if I was pregnant. 

[prairiewindmomma]

DesertBlossom, the paranoia behavior is in some regards easier to handle than when all of the inhibitions go. Heads up....language/sexuality/risk-taking may all be on the table.  This isn't widely discussed because we want to protect the privacy of our dear loved ones, but if someone hasn't mentioned it to you before, I want to make sure you knew. 

[Ottakee]

I am not familiar with this particular form, but I do know that in some cases VIt B shots can help as can some antipsychotic medications.  You need someone experienced in elder care though as meds can react differently in the elderly than they do in younger people.

Edited December 13, 2019 by Ottakee

[DesertBlossom]

21 minutes ago, Ottakee said:

I am not familiar with this particular form, but I do know that in some cases But B shots can help as can some antipsychotic medications.  You need someone experienced in elder care though as meds can react differently in the elderly than they do in younger people.

Do you mean Vit B? Interestingly when he was hospitalized a few months ago they said his Vit B levels were critically low. He isn't on shots but he is taking a supplement now. I can't say I have noticed it helps with anything though.

[DesertBlossom]

1 hour ago, prairiewindmomma said:

DesertBlossom, the paranoia behavior is in some regards easier to handle than when all of the inhibitions go. Heads up....language/sexuality/risk-taking may all be on the table.  This isn't widely discussed because we want to protect the privacy of our dear loved ones, but if someone hasn't mentioned it to you before, I want to make sure you knew. 

Dare I ask you to elaborate on this? 

We can joke about it among my siblings but one bizarre behavior has been my dad's obsession with a couple different women who made it clear they want nothing to do with him. Despite no contact with them in a couple years he regularly brings it up and wants their phone numbers. (I won't give them to him) We were all kind of aghast when he mentioned maybe getting married again and having more kids... thankfully (??) his physical limitations keep him from running out and finding a young bride. Physically, my dad can barely make it to the bathroom and back. But in his mind he is stilll the handsome young 20-something who won over my mother. 😄

[Tanaqui]

Oh. A friend of mine is going through this now with a relative. What she's described her relative going through sounds just awful for the ill person. I'm so sorry this is happening to your dad.

[DesertBlossom]

8 minutes ago, Patty Joanna said:

The misplacement of time is so odd!  We found that looking at old photo albums (MIL and FIL together) was quite calming, and something they could do together. 

It's also funny in that what people remember differs for the individual.  FIL had lost all sense of how to drive in his neighborhood, but he gave directions to my DH to travel a road he had traveled only once before, and that 20 years ago.  He was a pilot and loved maps.  My mom has normal old-age forgetfulness (and maybe a tad of dementia) and forgets to turn off the stove and that sort of thing, but she knows  exactly what interest she is earning in her investments, and to the penny how much she has in the bank.  She's always managed the books for her family...but she never really cared that much about cooking...  

It's so unpredictable.  

He doesn't actually think he's 20-something. But he did think he could get remarried and have more kids.... at 75 years old and barely able to take care of himself. It was kind of bizarre.

The conversation came up because he was trying (again) to get me to give him this women's number. I told him she had made it clear she wasn't interested. He said if he had given up that easily he never would have won over my mom. I tried to point out that the circumstances between then and now are just a smidge different and he was all aghast, like of course he is a fantastic catch and could win over any woman. I love my dad but he needs a caretaker, not a wife. 

[DesertBlossom]

I feel like his symptoms right now are more the paranoia and not being able to focus on things. But apparently he told the neurologist this week it was 1979, which surprised me.

[Annie G]

41 minutes ago, DesertBlossom said:

Dare I ask you to elaborate on this? 

We can joke about it among my siblings but one bizarre behavior has been my dad's obsession with a couple different women who made it clear they want nothing to do with him. Despite no contact with them in a couple years he regularly brings it up and wants their phone numbers. (I won't give them to him) We were all kind of aghast when he mentioned maybe getting married again and having more kids... thankfully (??) his physical limitations keep him from running out and finding a young bride. Physically, my dad can barely make it to the bathroom and back. But in his mind he is stilll the handsome young 20-something who won over my mother. 😄

My father is struggling w dementia and has recently experienced a pretty big issue w/behavior. One night he put on his robe while my sister fixed his dinner. He sat in his chair and opened the robe and was naked. My sister freaked out and told him to cover up and he did, but he was laughing and smirking. This came out of nowhere. He’s always been very prim and proper and introverted.  It’s not the only recent behavior issue, but it’s the only one like it. 

[Ottakee]

1 hour ago, DesertBlossom said:

Do you mean Vit B? Interestingly when he was hospitalized a few months ago they said his Vit B levels were critically low. He isn't on shots but he is taking a supplement now. I can't say I have noticed it helps with anything though.

YES....auto correct that I missed.  Maybe they can test his levels again.  It certainly won't cure everything but I have often found that each piece of the puzzle is important to getting the big picture right.

[DesertBlossom]

54 minutes ago, Annie G said:

My father is struggling w dementia and has recently experienced a pretty big issue w/behavior. One night he put on his robe while my sister fixed his dinner. He sat in his chair and opened the robe and was naked. My sister freaked out and told him to cover up and he did, but he was laughing and smirking. This came out of nowhere. He’s always been very prim and proper and introverted.  It’s not the only recent behavior issue, but it’s the only one like it. 

So starting not long after my mom died, my dad starting flirting with nurses in a way that was definitely cringe-worthy. He isn't crude, but he flirts in a "wrong time, wrong place and she's 3 decades too young for you" kind of way. Still definitely inappropriate. And gross. The behavior has been startling to say the least.  I have hoped it was related to old age or dementia and not my dad's true self coming out now that my mom was gone. 

[Annie G]

3 minutes ago, DesertBlossom said:

So starting not long after my mom died, my dad starting flirting with nurses in a way that was definitely cringe-worthy. He isn't crude, but he flirts in a "wrong time, wrong place and she's 3 decades too young for you" kind of way. Still definitely inappropriate. And gross. The behavior has been startling to say the least.  I have hoped it was related to old age or dementia and not my dad's true self coming out now that my mom was gone. 

It very likely is dementia/age related, not his normal personality coming to the surface. MIL had Lewy Body and when her disease advanced I know her personality/behavior were dementia related. It is embarrassing to be sure, and I’m so sorry you’re dealing with it, but clinging to the fact that it’s the disease making his brain unable to function normally can help you cope with it.  My sister is dad’s primary caretaker and has been since Mom passed 7 years ago and she still struggles with accepting his behavior as part of the disease. She continues to try to reason w him but his brain just...can’t. 

[Alicia64]

I love the advice to distract.

I'm so sorry you're all going through this.

Alley

[Annie G]

6 minutes ago, Alicia64 said:

I love the advice to distract.

I'm so sorry you're all going through this.

Alley

With MIL and my dad, acknowledge the issue then distract.  It’s really worked well for us.  This week Dad got a free paper tossed onto his driveway. He got all worked up, worrying that if he hadn’t seen it someone would think he was gone and might break in.  He wanted to call the paper and yell at them.  I acknowledged the problem- yeah, an unexpected paper can really be annoying.  I wish they wouldn’t do that. Then, since I know he subscribes digitally, I redirected by asking him how he enjoys the digital subscription. Told him I wanted to subscribe to our local paper but wasn’t sure whether I would enjoy the digital version. He told me the pros and cons of digital (I was careful not to mention paper, just asked about digital) and he ‘forgot’ he was mad about the paper.   It works in the moment, but you have to really be quick on your feet because this stuff happens multiple times a day. 

[DesertBlossom]

13 minutes ago, Seasider too said:

 

Please do not judge your dad’s character based on anything you see now. He is reverting to primal instincts, and behaviors will become driven by basic human needs - food, comfort, attention/companionship and yes, sex drive. It’s not his “real self,” not his hidden adult character.  What you described, exposing himself and thinking it funny, is something a lot of 4 year olds do. Your father will cognitively revert, but still live in an adult body. It’s weird and it’s normal, all at the same time. It’s important for you to keep in mind that he can not control this behavior. Just handle him with the same love and care you’d show a little kid. 

[eta it is amazing how a dementia patient can mask behaviors when tested, and a spouse often does a lot to cover for the one with dementia, so it is not uncommon for demented behavior to appear sudden once the non-dementia spouse passes]

Yes I know, much easier said than done. I hope you have a lot of help there and are able to take turns so no one burns out.

Business-wise, this is the time to make sure the right names are on his HIPAA forms with his doctors, and that there are appropriate PsOA in place. It would be good to also check with his insurance provider to determine what coverages are there in terms of in-home assistance as that becomes necessary. Also ask the doctor's office and insurance company about nurse navigators and/or social worker assistance as you might need counsel as things progress.

Please do get a copy of that book (36 Hour Day). I often hand out copies IRL, it’s that helpful. 

Thank you for this. I have a bunch of siblings and all of us are working together to make things work. He was hospitalized a few months ago and from there went to live with one sibling. We are taking turns having him live with us for several months at a time, but everyone is still helping all the time and we have kind of naturally divied up responsibilities. One takes him to appointments, one manages his finances, etc. But we work together well. We have also had an in-home nurse coming to help. For the most part we agree on his care and we all get along great, so I am grateful for that. 

[vmsurbat1]

4 hours ago, Seasider too said:

Please do get a copy of that book (36 Hour Day). I often hand out copies IRL, it’s that helpful. 

My MIL (now living with us) is definitely experiencing early symptoms of dementia--nothing horrific yet.  Is the 36-Hour Day helpful in that situation?  (I read some reviews that suggested it wasn't.....)  Also, there are several editions?  Does it matter which one?  TIA.  This is definitely a new phase of life for us, and I want to be prepared....

Edited December 13, 2019 by vmsurbat1

[KrissiK]

My dad has very slow progressing dementia. We are just learning to be very patient with him and humor him. He doesn’t do anything outrageous, but his filter is very low, his cognitive processing isn’t good and it takes him forever to accomplish the activities of daily living. But that’s fine because he doesn’t go anywhere or do anything.

[goldberry]

23 hours ago, Seasider too said:

Go get yourself a copy of The 36 Hour Day. You will find it exceedingly helpful. It will help equip you with strategies like deflection, redirecting, etc. Your goal should not be making him see the truth. It should be to deescalate the discomfort and anxiety your loved one is feeling (even if it disturbs your own sense of justice to do so). 

 

 

Thanks for that recommendation, I will check it out.

Desert Blossom, I share your pain.  We had to put my mom in a nursing home earlier this year (she was starting fires and uncooperative).  My dad had been taking care of her but he had to have serious back surgery.  My sister who lives close has back/health issues as well.  I live out of state.  Right now I'm going home about 1 week every 6 weeks or so, it's as much as I can manage.  My dad and my sister see mom in the nursing home almost every day, and get to bring her home for visit several days a week.  When I'm home I encourage my sister to take the time off, but it's hard for her to switch gears.  This last time though she finally took a trip out of town, which was so good for her.  My dad, of course, is horribly depressed about "not being able to take care of" mom, while at the same time recovering from his own health issues.

We definitely had to give up the arguing/reasoning some time ago, and now just nod and redirect.  It is SO HARD.  Heartbreaking.  But what can you do but get through it?

((hugs))

[May]

You’ve been given some wonderful advice. It’s painful to watch the decline of people we love.😢

[TravelingChris]

I have memory problems as a result of my autoimmune issues-  all cured with mega doses of steroids  but that has so many bad side effects.  My autoimmune issues all became much worse with ;late perimenopause and now menopause.  I first was thinking at times that someone else lost something or took something.  That didn't last long because I figured out that I just get so extremely tired that I am basically a walking zombie (without the eating of humans).  At those times, I just usually try to put something in a safe place but later can't access that memory.  When I find it, I do access that memory.  I figure that in dementia patients this kind of problem would be even worse since there's does not get better with enough rest or big doses of steroids.

Now the babying part is very hard for me and I sort of ignore it.  I do not cook on stove or in oven when I am not energetic enough or aware enough.  I usually stick to microwave only then though sometimes I can put things in a slow cooker in the morning when I have energy and it is ready for us when others are home.  But the real thing I refuse to give up is knowing about finances and double checking things.  My dh has taken over most of the finances but he is tired too (from volunteering too much, work, and then doing an exhausting sport).  In the last few months, I have caught that he overpaid my son's student loan because he didn't remember my email to him in September that the final payment would be in Nov and for him to call.  He forgot to renew a membership we have and he didn;t even open the utility bill so didn't pay it on time.  Fortunately, he has now realized that he needs my help when I am cognizant and today he was showing me a spreadsheet with he pay over the last few years, his 401K, his bonus, his employee stock, etc.  

But for people who are losing it and not gaining it back, changing subjects, engaging them in something else, and just realizing it is a process.  And I know, having had Lewy Body  ruled out a few years ago, that it has a different pattern of deterioration than Alzheimer.  The body is much more affected and the brain part has a different aspect too. 

[DesertBlossom]

7 hours ago, Patty Joanna said:

This is a beautiful family effort and I am so happy you are all working together on this.  I did want to mention that sometimes it happens that frequent changes make it more difficult for the person with dementia to find and keep a point of stability.  We saw inflection points (to the bad) with every move that happened...  If your dad is dealing with it, that's good. I just mention it so you can be aware of the potential concern.  

I think this diagnosis may make us rethink our plans. There are 4 of us who have room for him. Sibling #3 will have him starting this weekend. It is my turn after that, so in 2 or 3 months. When we remodeled our home we made the bathroom handicap accessible with the idea he might live with us someday. I am thinking his stay with me might end up permanent, for a variety of reasons.

[J-rap]

It is very tough...  My mother was suffering from some paranoia plus other confusing behavior ~ mostly not remembering timing of things ~ so she'd invite us over for dinner and then not take the meat out of the freezer until 8pm and we'd be eating at 11pm.  Well, after that happened more than once, we realized it wasn't a one-time brain-freeze.  Her paranoia was either thinking that a man was shining a flashlight into her bedroom window (and then she'd wander outside at night to try and find him in the bushes) or that there were babies crying in the house somewhere that needed tending to.  (There were no babies!)

That stage when we finally realized what was going on but still felt like she was her old self a lot of the time felt other-worldly.  We also found that distraction worked, plus just taking charge to re-direct the activity or control the circumstances.  (But trying to talk reason with her was pointless.)  It was super confusing for my dad, and he was convinced for the longest time that if he tried to explain things really, really clearly, she would get it.

That stage didn't last too long though because she had a stroke which then took away almost all cognition overnight.  

I miss my mother a lot.  She went from a really sharp, funny, 88-year-old to someone I barely knew in about a year.  But for sure it's hardest on my dad.  I think he thought they'd have another good 10 years of having fun together.  (But we all realize that being sharp and healthy until 88 is no small feat!)

 

[Scarlett]

We had an elderly neighbor that thought someone was shining a flashlight in her bedroom window.  She would call us and my xh would go down there to see the wild cats scatter from in front of her window.  So clearly no one had been there with a flashlight anytime recently.  She also thought her house was on fire and called firemen for help several times.  Shortly after her family took charge and put her in a nursing home.