Alzheimers "What to do" question again.

[prairiewindmomma]

IME--it can be a few things:

 

1. It could be a temporary thing: UTI, vascular issue (blockages in the carotid arteries) or something where you will see an improvement back to the previously impaired state and things will progress normally along that some rough arch

 

2. It could come and go, but things continue deteriorating in a variety of areas.

 

3. It could be gone.

 

Losing awareness of recent experiences is a late stage Alzheimers thing. http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp  My relative currently recognizes me most of the time, but occasionally does not.  She usually re-orients, even if I just leave the room and come back in later.

 

Honestly, I would not leave this weekend until things are sorted out. Call the brother, get everybody on the same page with what is going on (as to previous incidents, current state of affairs), and come up with a plan of action. It will be too easy for FIL to put off seeing a doctor, put off making the phone calls.  In our experiences, there was a heavy, heavy, heavy amount of denial and refusal to change by the care taking spouse.   I would call the doctor's office now, if there are weekend hours, and see if you can pick up a hat to put in her potty to get a urinalysis done, and go from there.

[creekland]

I have FIL in this room now talking with hubby.  This has calmed MIL.  I don't know if it will last if they leave or not.  Time will tell.

 

Tomorrow BIL is coming so we'll all be together and the guys (all three of them) can talk.  

 

I e-mailed hubby the Alzheimer's link.  He can look at it later this evening when he gets computer time and perhaps find some local (to FIL) connections to have on hand.

 

Thanks.

[Seasider]

Sundowning is common - the later in the day, the greater the confusion.

 

Honestly, creekland, her symptoms seem to indicate that she is beyond the realm of FIL's care, despite his wishes. If he refuses to allow for some medical intervention or other serious accommodations to have her needs met, it would truly be a case of elder abuse (with him as the "abuser," though it seems very harsh to state it that way). She has the ability to refuse medical care, it is is her right as long as she has capable cognitive abilities, but that is clearly not the case. Is there a family attorney you can contact, or at least your FIL's physician, to get a little advice? Bummer that it's a holiday weekend.

 

I believe prairiewindmomma is right when she recommends calling in the siblings to circle the wagons and make a plan.

[Seasider]

Wrote the above before your last message, great that brother is involved.

 

Dehydration is also a possibility.

[Reefgazer]

I agree with these points, but I think it's crucial to get the sane parent to willingly cooperate in order for it to work. Creekland, your FIL probably will be willing to accept help with a little gentle pushing, because he can surely see this getting out if control, just as my mom saw it. The united front will crack with a bit of pushing, I'll bet.

 

1. Meds can be crushed and served in something like chocolate pudding. Most elderly people love sweets.

2. FIL may be in good health now, but that can change in a second. We were in a very similar situation with my grandparents, and then my grandfather had a stroke and things had to change. The amount of chaos from that situation added way more stress for everyone than would have otherwise happened.

3. I think it's time to gently put your foot down as a united front between all of their children--the current situation is too much of a burden for FIL to be asked to handle on his own, and you are concerned (rightfully) for MIL's safety.....not because of a failure on FIL's part, but because MIL has become too complicated for anyone to handle. It's got to be uncomfortable for her to be frightened all of the time, and her anxiety (& likely anger) need to be addressed.

Edited September 3, 2016 by reefgazer

[mschickie]

I can say with my Aunt either a UTI or dehydration can cause her to be more confused.  Luckily she still recognizes us but I am not always sure she knows my name versus my sister.  The other thing is it could be progressing rapidly too.   My Aunt's dementia first really started showing symptoms only in July of 2015.  Up to that time she drove (slowly) and would travel to visit friends.  We did not even really know about it but friends started to notice then she was having a hard time finding words sometimes.  By the time she moved up here in Jan.  she really had no sense of time and did extremely poor on a memory test at the doctor.  It was May/June when she needed the nursing home.  Mind you she is better than a lot of the folks on her floor but you really would not want her by herself at this point.  She is happy for the most part especially since they have ice cream for a dessert choice every day  :laugh:

 

You really want to work on getting a POA and a health care proxy done as soon as possible for both her and fil.

 

I was going to mention looking into daycare programs that she could go to so he can have some time off but after reading your last couple of posts I would say it is probably too late for that.  I would research Memory Care facilities.  Many of those are place they could move into together but she could get the care she needs.  When you all sit down together have a list of some options you could look at, either for them as a couple or her alone.

 

oops edited that to July 2015.  It really has been only a year for her with it but I notice  that her decline is in spurts.

Edited September 5, 2016 by mschickie

[Reefgazer]

Once we got dad into a new home, he had to be hospitalized for dementia-related reasons, and the speed with which he went down hill was so very fast. Acceleration of the symptoms is a sign of later stage dementia; the later the stage, the faster it goes. From there, there will be days when she appears to rally, which gives false hope, and then it's downhill again, faster and faster.

 

My dad had dementia that caused his body to fail, but his mind was still very sharp, with subtle personality changes that no one recognized as dementia. It took our entire family weeks after hospitalization of my dad to believe he had dementia, because his mind was sharp; his symptoms were physical, and that killed him before his mind went. It wasn't until the very end we believed the dementia diagnosis, after we read up on it and all the physical symptoms were there (the mental symptoms were either not present or barely noticeable). I think you probably have things rougher than I did because of the mental symptoms.

Ugh. We might have an even more serious problem soon. FIL and hubby just went out for the mail. MIL asked a few times where they were, but was satisfied with my answer. However, when they came back they walked around in the yard we're looking out over checking for storm damage. MIL didn't recognize either one... and didn't believe me when I told her who they were - more than once. She was only satisfied when she heard FIL's voice talking.

 

She's not recognized hubby before - or thought he was FIL (he looks like him from an earlier era), but this is a first (that I know of) for FIL.

 

How long before this becomes "the new normal?" She's NOT stressed at the moment. On the contrary, she'd been excitedly (and "secretly") telling me the results of her trip to the bathroom until moving on to this.

 

Things seem to really be moving downhill more quickly than before - or is it a phase?

[creekland]

I agree with these points, but I think it's crucial to get the sane parent to willingly cooperate in order for it to work. Creekland, your FIL probably will be willing to accept help with a little gentle pushing, because he can surely see this getting out if control, just as my mom saw it. The united front will crack with a bit of pushing, I'll bet.

 

 

I'm pretty sure FIL is open to things now - not moving, esp not both of them moving - but if given specific numbers to call with plausible options, I think he sees the need for something.  I think he just doesn't really know what to do, so I'm trying to get some plausible ideas.

 

MIL continues to surprise me.  This past hour she's been singing my praises "thank you for being here and helping me" (leading me to believe she'll accept a decent helper once she gets adapted to it), and then she's been showing me all the clothes she's wearing and asking if "it's ok" and "should I wear this to bed" with a few "what's that noise" questions thrown in.  The darkness will lead us inside soon.  The noises are scaring her (waves and wind).  She also doesn't know what to wear to bed.

 

NONE of this has been common as per our last visit.

 

I'll have to get off the computer when we head inside, so additional thoughts I'll look at tomorrow morning.  I'll try to fill hubby in later tonight - and he has the link from above - then I'll see if I can share more tomorrow before BIL comes (lunchtime).

 

Then I'll pray...

 

She never liked me in her "old days" (and vice versa), but I definitely feel for her (and FIL, hubby, and BIL) now.  This is one horrid disease.

[StephanieZ]

Oh, Creekland, I'm so sorry.

 

I hate it that I recognize everything you are saying. BTDT on all counts with my own mom.

 

A couple months before she passed away, my dh of 22 years, who she always liked better than me (he's more likable, lol), got an overdue hair cut. When he sat down at our shared dinner table (she lived with us by then), she had no idea who he was. She never did *believe* me that he was him . . . She really believed I'd got rid of him and replaced him with a new hottie. But, oddly, she would just sort of accept what I told her (that he was my dh, same guy . . .) through force of will because *I* told her so, and she had decided to trust anything I said. From the periodic questions she'd ask about him after that, it was clear that she never really recognized him again, but she just sort of said "whatever" and accepted it . . .

 

Personally, I would NOT advise moving her to another environment unless you have no choice (financially or for your FIL's wellbeing). Moving during ALZ is very disruptive and upsetting, and very often results in rapid and irreversible decline. I would encourage getting in home help ASAP, more for your FIL's wellbeing than anything else, so he can have some respite. 

 

You are experiencing the sweetness that ALZ can bring. It brought it in my mom. It is tender and soft like a little child. She was always a loving great woman, but the dependency of ALZ brings something very different. Not many people talk about that. They talk about the ugliness and the aggression, but I never experienced that with Mom. I personally feel like an ideal environment can go a LONG way toward minimizing those potential bad things and maximizing the positives in life. 

 

If finances allow it, I'd hire help ASAP. Just getting a sweet, caring, gentle woman in there a few hours most days will be a respite for your FIL, a help with housekeeping/dressing/fixing her hair/bathing/etc. And if you can find the right person, your MIL can feel safe and cared for and it can be very good. Personally, I had great success with word-of-mouth private pay people, and much less success with agencies. Agency aides came and went like crazy. I paid $20/hr but the aides only got 9-10/hr, so it was just a shitty job and they moved on rapidly and/or were never great from the beginning. In contrast, the private pay people I found were awesome, and I could pay them very well (for our area) and still be paying less than I'd pay the agency. So, they loved the job and worked hard for us. 

 

Be watchful for UTIs, for SURE. I personally *just* discovered this year the supplement D-Mannose to prevent (and even treat) UTIs. I *so* wish I'd found it while Mom was alive. It's made a WORLD of difference in my health, and it would have been awesome for mom. She had a long HX of frequent UTIs. Look for it on Amazon. Get the powder (I use the NOW brand) and you just mix a 1/2 tsp with water or juice and it tastes mildly sweet. I'd dose 2x/day. It's super safe, even for diabetics. WORLD of difference. MANY elderly people, especially women, get bad UTIs, especially as dementia begins. A friend's dad with ALZ died 2 weeks ago from a UTI! He'd been in quite good shape (better than your mom), got the UTI, went in hospital, septic, died within days! 

 

 

[Xahm]

This is not first hand experience, but I remember that for some elderly relatives with dementia, a whiteboard with certain info was really helpful. Like one of my inlaws got fixated on "what day is it?" So her family made sure she could look at the board and know it was Wednesday, for example. Another person would worry about dinner, so that info was posted. Maybe your FIL could leave her a note in a prominent spot whenever he leaves the room? Or if he leaves her with a caregiver write "I'm at the store and will be back soon. Susan will make you lunch while I'm gone." Maybe then it will be easier for "susan" or whoever to be accepted as legit. (All this hinges upon having good enough eyesight to read, and I also heard this doesn't work at all for some folks.)

Good luck and I hope and pray your husband, BIL and FIL figure out some good steps to take.

[creekland]

Oh, Creekland, I'm so sorry.

 

I hate it that I recognize everything you are saying. BTDT on all counts with my own mom.

 

...

 

Personally, I would NOT advise moving her to another environment unless you have no choice (financially or for your FIL's wellbeing). Moving during ALZ is very disruptive and upsetting, and very often results in rapid and irreversible decline. I would encourage getting in home help ASAP, more for your FIL's wellbeing than anything else, so he can have some respite. 

 

...

 

Be watchful for UTIs, for SURE. I personally *just* discovered this year the supplement D-Mannose to prevent (and even treat) UTIs. I *so* wish I'd found it while Mom was alive. It's made a WORLD of difference in my health, and it would have been awesome for mom. She had a long HX of frequent UTIs. Look for it on Amazon. Get the powder (I use the NOW brand) and you just mix a 1/2 tsp with water or juice and it tastes mildly sweet. I'd dose 2x/day. It's super safe, even for diabetics. WORLD of difference. MANY elderly people, especially women, get bad UTIs, especially as dementia begins. A friend's dad with ALZ died 2 weeks ago from a UTI! He'd been in quite good shape (better than your mom), got the UTI, went in hospital, septic, died within days! 

 

Sorry about your mom.  I've definitely developed the BTDT compassion for everyone who deals with this in a loved one.  And thank you for sharing your BTDT thoughts.

 

The part I underlined might be the key to what is going on now.  During the summers, my in-laws spend a bit of time going between their regular house and their vacation cottage on a river.  They've done this since hubby was a kid (same cottage).  But this time, MIL has been confused about which place she's in - often mistaking the cottage (where we're at) for her house.  I suspect the fact that she travels with FIL so much now, that the whole moving thing has become overwhelming.  The entire first day they were here she wanted to know when they were leaving and kept repeating, "well I've had a good time down here."  The second day that had slipped back to once in a while.  I don't know what today will bring yet.

 

I don't know that we can convince FIL to give her anything at the moment.  However, hubby talked with him quite a bit last night and he seems totally open to contacting the local Alzheimer's chapter locally (as provided in that link earlier) and getting someone in his house to watch her.

 

The link was also super good for hubby to spend time on.  He was able to read off all the signs/symptoms of the levels of severity and see them (or how they progressed) in his mom.  He's armed with all of that for his talk with BIL later today.  I suspect part of the reason I could see them first is because I've been spending our visiting time together (for a few years now) while they (the guys) get together and do things - respite for his dad.  They saw her some at meals and things, but not full time.  It never looked that bad to them... until recently.

 

Hubby said FIL mentioned he didn't realize until very recently just how bad things have gotten, but that's because he's with her daily, so adjusts to how she is.  Her wandering off (often) and not sleeping normally has "clicked" with him, esp when hubby was also able to relay other symptoms to him from the Alz site.

 

I'm hopeful things will work out when the three of them get together, and I'm super hopeful they can find a gem of a person.

 

One main thing that worries me is her racism... and FIL shares most of it, he's just not as verbal about it as she is.  Maybe I'm concerned because that's the main thing that drives me bonkers, but how does one go about finding in home care and bring up that subject?  I like to think few share their views in this day and age, but someone is going to have to tolerate listening to it (and Fox News, though when I'm with her alone I now switch to the Weather Channel and that works - FIL likes Fox News when he's here).

 

This is not first hand experience, but I remember that for some elderly relatives with dementia, a whiteboard with certain info was really helpful. Like one of my inlaws got fixated on "what day is it?" So her family made sure she could look at the board and know it was Wednesday, for example. Another person would worry about dinner, so that info was posted. Maybe your FIL could leave her a note in a prominent spot whenever he leaves the room? Or if he leaves her with a caregiver write "I'm at the store and will be back soon. Susan will make you lunch while I'm gone." Maybe then it will be easier for "susan" or whoever to be accepted as legit. (All this hinges upon having good enough eyesight to read, and I also heard this doesn't work at all for some folks.)

Good luck and I hope and pray your husband, BIL and FIL figure out some good steps to take.

 

That's an awesome idea as she's always asking "what day is today?"  But I'm really not sure she can read any longer.  She barely wants to look at pictures either.  I've chalked it up to her mind not remembering anything in pics and knowing it should, so being reluctant.  It could be worth a try though.

[Reefgazer]

Regarding the racism: don't worry about it when finding long term care. They will assume it's dementia related and give it a pass. They have seen a lot of bad behavior in dementia patients and look past it. My dad took up swearing in his dementia days, which mortified my mother, because the f word would come out of his mouth when he wasn't happy at something the nursing staff asked him to do. This from a guy that wouldn't say shit if he had a mouthful in his healthy days. But they didn't know that; much bad behavior is written off to the dementia. So just apologize on her behalf and forget about it.

Sorry about your mom. I've definitely developed the BTDT compassion for everyone who deals with this in a loved one. And thank you for sharing your BTDT thoughts.

 

The part I underlined might be the key to what is going on now. During the summers, my in-laws spend a bit of time going between their regular house and their vacation cottage on a river. They've done this since hubby was a kid (same cottage). But this time, MIL has been confused about which place she's in - often mistaking the cottage (where we're at) for her house. I suspect the fact that she travels with FIL so much now, that the whole moving thing has become overwhelming. The entire first day they were here she wanted to know when they were leaving and kept repeating, "well I've had a good time down here." The second day that had slipped back to once in a while. I don't know what today will bring yet.

 

I don't know that we can convince FIL to give her anything at the moment. However, hubby talked with him quite a bit last night and he seems totally open to contacting the local Alzheimer's chapter locally (as provided in that link earlier) and getting someone in his house to watch her.

 

The link was also super good for hubby to spend time on. He was able to read off all the signs/symptoms of the levels of severity and see them (or how they progressed) in his mom. He's armed with all of that for his talk with BIL later today. I suspect part of the reason I could see them first is because I've been spending our visiting time together (for a few years now) while they (the guys) get together and do things - respite for his dad. They saw her some at meals and things, but not full time. It never looked that bad to them... until recently.

 

Hubby said FIL mentioned he didn't realize until very recently just how bad things have gotten, but that's because he's with her daily, so adjusts to how she is. Her wandering off (often) and not sleeping normally has "clicked" with him, esp when hubby was also able to relay other symptoms to him from the Alz site.

 

I'm hopeful things will work out when the three of them get together, and I'm super hopeful they can find a gem of a person.

 

One main thing that worries me is her racism... and FIL shares most of it, he's just not as verbal about it as she is. Maybe I'm concerned because that's the main thing that drives me bonkers, but how does one go about finding in home care and bring up that subject? I like to think few share their views in this day and age, but someone is going to have to tolerate listening to it (and Fox News, though when I'm with her alone I now switch to the Weather Channel and that works - FIL likes Fox News when he's here).

 

 

That's an awesome idea as she's always asking "what day is today?" But I'm really not sure she can read any longer. She barely wants to look at pictures either. I've chalked it up to her mind not remembering anything in pics and knowing it should, so being reluctant. It could be worth a try though.

[StephanieZ]

With my mom, I did find it VERY helpful to have a white board with what was going on for the day. I actually got (two) week-at-a-time white board calendars. I'd mark on the day what was going on that day, and then I'd X the day out when it passed. This was VERY helpful. One of the best things I did, actually. She could always see what was happening today and on the next few days. 

 

Also very helpful were a couple "dementia clocks" . One was like an iPad and just displayed "It is Wednesday morning" and the other was a big digital clock that said, "Wednesday, March 3, 2015" or something like that. Sound ridiculous, but VERY helpful! Another thing that was helpful was just to print out a list of what we're/she's doing today and leave it by her bed for when she wakes and/or accessible all day. Simple list with times. 

 

Also, folks with dementia can often process the written word much better than spoken words. SO, having things written down really is helpful. 

 

[creekland]

So far this morning she's far more quiet than the last two days.  She's also very forgetful of who's who in the family and super concerned that we won't leave without her, but still wants to know when we're all going to leave.

 

When hubby joins us she's more talkative and seems to remember more (this is relative, of course), but for me she seems "lost."  Once he leaves she forgets he's here.  She also doesn't know who's in the other room and can't remember her other son when I mention he's coming (in response to her asking "who all is coming down today?").

 

Still, I think she'll do ok for someone "strange" staying with her because she won't know they're strange (I think).  I suspect she's at the stage where she wants to bond with "someone" rather than being alone.  Alone frightens her.

[creekland]

With my mom, I did find it VERY helpful to have a white board with what was going on for the day. I actually got (two) week-at-a-time white board calendars. I'd mark on the day what was going on that day, and then I'd X the day out when it passed. This was VERY helpful. One of the best things I did, actually. She could always see what was happening today and on the next few days. 

 

Also very helpful were a couple "dementia clocks" . One was like an iPad and just displayed "It is Wednesday morning" and the other was a big digital clock that said, "Wednesday, March 3, 2015" or something like that. Sound ridiculous, but VERY helpful! Another thing that was helpful was just to print out a list of what we're/she's doing today and leave it by her bed for when she wakes and/or accessible all day. Simple list with times. 

 

Also, folks with dementia can often process the written word much better than spoken words. SO, having things written down really is helpful. 

 

Search for these on Amazon?  I could see her appreciating one by her chair at each place.

 

Ahh, found them with a simple google search - thanks for the idea!

Edited September 4, 2016 by creekland

[Joules]

With my mom, I did find it VERY helpful to have a white board with what was going on for the day. I actually got (two) week-at-a-time white board calendars. I'd mark on the day what was going on that day, and then I'd X the day out when it passed. This was VERY helpful. One of the best things I did, actually. She could always see what was happening today and on the next few days. 

 

 

This is excellent for good things, but I'd caution against putting everything on the calendar.  If there was something coming up that could cause my dad the least bit of stress (dentist, doctor, long drive, etc), he would fixate on it as soon as it appeared coming up.  It turned out to be better to have the last minute drama of "We are going to the dentist today" rather than the week-long dreading of and fretting about the upcoming event. YMMV

[zoobie]

Re: the racism, it seems to be a pretty common issue. My grandmother wasn't before (or at least did a pretty good job pretending because she supported the civil rights movement in Atlanta in the 1960s though didn't march or participate) but when she was more chatty and coherent, she would let the n-word fly frequently. My stepmother explained it to the agency and asked that they send people who were experienced with this. She was very conflicted about even bringing it up because it sounds like she didn't want black people coming to her house. She didn't want someone coming who would be subject to abuse and would take it personally. The agency was really understanding about this and assured her it was very, very common.

 

If you decide not to use an agency, look into nanny tax services. An elder law attorney can explain it more thoroughly, but if she or he ever needs Medicaid, you have to show that you paid down your assets legally. (You may be able to "pay" family members for caretaking also. My mother and I paid ourselves and then used the money for my grandmother, but she had very few assets. Certain family members are exempt from payroll rules.) There's a limit to what you can pay a caretaker before it triggers the need to pay payroll taxes for them. You'll also want to see that the service covers liability (personal and workers' compensation) insurance. That's why many people opt for the inclusive agencies because it's less to think about when you're already stressed to the max. 

[Denisemomof4]

Ok still reading.

 

First of all, it is illegal to lock her in her house. The likelihood of her turning on thenstove or starting a fire and her not being able to escape is reason enough not to ever consider this, but again, it is illegal.

 

Secondly, Fox News (BLECH!) is not the cause of her paranoia. It is a stage of the disease. At this stage my father had to have my mother admitted to a geriatric psyche ward for medication changes and adjustments. As sad as it was, it was the best thing for everyone including her. Once she was properly medicated, the paranoia went away. My mom was calling the police, banging on neighbor's doors at all hours, etc. I had to go sit with her just so my dad could take a shower.

 

Visiting Angels and Hospice also have personal care providers and LNA's they can send to the house.

 

You might want to call a social worker to see what services your mil qualifies for. If they have plenty of money, they may have to pay out of pocket, at least for some of it. Your FIL needs to understand that he can never leave his wife alone again.

[Denisemomof4]

BTW, if you hire through an agency, you will pay more money BUT they all have been back ground checked and have clean driving records.

[Denisemomof4]

The last time FIL tried to take her to the doctor (over an injury), she supposedly tried to get out of the car (while moving) once she figured it out. They never made it there. If they could somehow overcome that, how would one get her to take meds? She won't even take Tylenol now. Can they be put in food without affecting taste?

 

She's always had an aversion to doctors. That's not new and she has kept it in her memory. She used to take Tylenol fairly frequently, but won't now (or recently).

Check into an Angel Guard. She likely couldn't escape one of these. I used them on an autistic client I used to work with.

[Denisemomof4]

As far as meds, IF they can be crushed (not all can be) the food route would ve the way to go.

[Joules]

Ok still reading.

 

First of all, it is illegal to lock her in her house. The likelihood of her turning on thenstove or starting a fire and her not being able to escape is reason enough not to ever consider this, but again, it is illegal.

 

Secondly, Fox News (BLECH!) is not the cause of her paranoia. It is a stage of the disease. At this stage my father had to have my mother admitted to a geriatric psyche ward for medication changes and adjustments. As sad as it was, it was the best thing for everyone including her. Once she was properly medicated, the paranoia went away. My mom was calling the police, banging on neighbor's doors at all hours, etc. I had to go sit with her just so my dad could take a shower.

 

Visiting Angels and Hospice also have personal care providers and LNA's they can send to the house.

 

You might want to call a social worker to see what services your mil qualifies for. If they have plenty of money, they may have to pay out of pocket, at least for some of it. Your FIL needs to understand that he can never leave his wife alone again.

Denise, Do you happen to know what medication worked? We've tried so much and nothing is helping.

[Denisemomof4]

Also, there are adult day programs she can go to. I considered one at Easter Seals but never sent her. After my dad died, I moved her i to my home and cared for her until she died... in my home.

 

If you notice a sudden increase in symptoms or that she is sleeping all the timenand you can't wake her, it is likely a UTI. People qith this horrific disease are prone to them.

 

 

Joules, my mom lived with me many years ago. I don't remember which meds she was on but I know she was on anti anxiety meds and others. Proper treatment is imperative. It can slow the disease and help better control the symptoms.

[Denisemomof4]

Oh..... I remember she was on ativan and seroquel among others. She had Lewy Body Dementia. Horrible, horrible disease.

[Joules]

Oh..... I remember she was on ativan and seroquel among others. She had Lewy Body Dementia. Horrible, horrible disease.

 

Thanks, they've tried those, I was just hoping there was something I hadn't heard of.  The first only works in high enough doses to make him completely inactive, and the second...just not enough.  They are experimenting with combinations of other things now.

[Denisemomof4]

It can be tricky finding the right concoction. My mother's meds for the Parkinson symptoms made her dementia worse, and the dementia meds made the Parkinson's symptoms worse. It was horrific.

 

She even hallucinated. 😢

[Denisemomof4]

Joules, research coconut oil and alzheimers. I saw a very interesting documentary on it.

[Reefgazer]

I have to say be very careful of certain medications. The Seroquel has a black box warning against using it for elderly dementia patients, and it sent my father into convulsions and his quality-of-life was never quite the same after the convulsions (although it's hard to tell if it was the convulsions or the natural progression of the disease which decreased his quality-of-life so quickly after the Seroquel). The, Ativan, however, did seem to calm him when it was necessary. Family needs to be aware that a lot of these medications knock the patient out and make them sleep, and that's the reason that they are much calmer. But when they are sleeping, they can't really participate in family life anymore once on these. We actually rejected all psychiatric and narcotic meds for my dad after the Seroquel disaster because the hospital seemed more likely to use it for their convenience than for dad's benefit. We got a lot of pushback from the hospital for rejecting the meds, but dad wasn't uncomfortable or agitated, those meds were just SOP for elderly dementia patients where dad was. They pushed so hard for these meds that we hired him around the clock aides so that he couldn't be over medicated when we were not present.

 

 

 

quote name="Denisemomof4" post="7184840" timestamp="1473007926"]

Oh..... I remember she was on ativan and seroquel among others. She had Lewy Body Dementia. Horrible, horrible disease.

Edited September 4, 2016 by reefgazer

[creekland]

Her fixation right now is her clothes.  She's upset at all the lint balls on them and is picking them off and eating them.  None of us have been able to stop her.  We got her to take her favorite shirt off in favor of another where they don't show up, but that has caused her to move on to her pants.  NO distractions work.  She's upset that we won't help her pull the hundreds of these off.  Her other pants have them too since she has nothing newer here.

 

Any suggestions for that?

 

Oh, and with locking her in the house, it isn't alone.  It's when FIL (or someone else) is also in the house and has the key.  It would stop her from looking for him outside when he's merely in another room in the house.

 

But right now, her eating the lint... ugh!  (sigh)  She won't even throw them in the trash can right next to her instead.

 

And of course, it's something new.  She's worn these same clothes before for days/weeks/years and it hasn't bugged her.  I've now been abandoned by everyone else (BIL and SIL are also here now).  If I leave, she'll just follow me - and keep with it.  We're back out on the porch because I hoped seeing the great outdoors would provide a distraction.  It hasn't.  Nor has any other attempt at conversation, etc.  (sigh)

 

How do regular caretakers handle these fixations?

[Joules]

 

How do regular caretakers handle these fixations?

 

Some rambling thoughts:

If they aren't harmful, sometimes they just let them go.  It's one of those things that is SO much easier for a professional than a family member.  With family, it hurts so much to see a loved one in that situation.  You are actually grieving the loss of the person they were when they sit right there.  A professional is there for 4 or 8 hours and can have some detachment.  It doesn't necessarily break their heart.  In your case, it seems like this is worsening so fast, it's hard for your family to emotionally keep up.

 

(Also regular caretakers have different talents than others of us.  Some people can teach beginning violin all day long and not have a nervous breakdown.  Others aren't as bothered by the quirks of dementia patients.)

[prairiewindmomma]

The picking behavior is normal. We give fidget toys to her or give her a stack of wash cloths to fold.

 

There are button alarms you can buy at Stuffmart to put into door frames that will chime if a door is opened. Also, depending on whatever plan you come up with, you may consider a tracking device in her shoes, particularly if she always wears the same pair.

[prairiewindmomma]

Can you find a coloring book or some little craft to do with her? That might help to pass the time.

[Laurie4b]

Her fixation right now is her clothes.  She's upset at all the lint balls on them and is picking them off and eating them.  None of us have been able to stop her.  We got her to take her favorite shirt off in favor of another where they don't show up, but that has caused her to move on to her pants.  NO distractions work.  She's upset that we won't help her pull the hundreds of these off.  Her other pants have them too since she has nothing newer here.

 

Any suggestions for that?

 

Oh, and with locking her in the house, it isn't alone.  It's when FIL (or someone else) is also in the house and has the key.  It would stop her from looking for him outside when he's merely in another room in the house.

 

But right now, her eating the lint... ugh!  (sigh)  She won't even throw them in the trash can right next to her instead.

 

And of course, it's something new.  She's worn these same clothes before for days/weeks/years and it hasn't bugged her.  I've now been abandoned by everyone else (BIL and SIL are also here now).  If I leave, she'll just follow me - and keep with it.  We're back out on the porch because I hoped seeing the great outdoors would provide a distraction.  It hasn't.  Nor has any other attempt at conversation, etc.  (sigh)

 

How do regular caretakers handle these fixations?

 

You might try music. Sing or play a popular song from when she was in her teens or twenties, or if she is a Christian, try an old hymn. That part of the brain often stays keyed in for a long time. A lot of times they will join in.

[creekland]

Can you find a coloring book or some little craft to do with her? That might help to pass the time.

 

She has no interest in these (coloring/crafts).  What sort of fidget toys do you use?

 

Right now it's off her mind since we just went out for a short walk.  She can only walk about 30 feet when not "crazed," but it broke up her train of thought - for now.  We went through a time of her socks not matching (?) too.  I'm still not sure what was wrong with them.

[creekland]

You might try music. Sing or play a popular song from when she was in her teens or twenties, or if she is a Christian, try an old hymn. That part of the brain often stays keyed in for a long time. A lot of times they will join in.

 

Ooh, I bet this will work.  She likes to sing or hum along with familiar commercials.  Thanks!

[zoobie]

You might try music. Sing or play a popular song from when she was in her teens or twenties, or if she is a Christian, try an old hymn. That part of the brain often stays keyed in for a long time. A lot of times they will join in.

My stepmother plays DVDs of Gaither Brothers (?) gospel concerts and musicals like South Pacific and Sound of Music that her mom liked.

[creekland]

You might try music. Sing or play a popular song from when she was in her teens or twenties, or if she is a Christian, try an old hymn. That part of the brain often stays keyed in for a long time. A lot of times they will join in.

 

FWIW, this worked WELL!  Except we don't have Wifi here (sigh) and my cellular internet connection is having difficulties playing whole songs.

 

Still, she loved "Buttons and Bows," and 40's Hits are what I'll be looking for to bring along on our next visit.  She was born in 1930, so 40's seems to be spot on.

 

Thanks again!

[Laurel-in-CA]

It can be tricky finding the right concoction. My mother's meds for the Parkinson symptoms made her dementia worse, and the dementia meds made the Parkinson's symptoms worse. It was horrific.

 

She even hallucinated. 😢

 

BTDT with my mom. At first she knew she was hallucinating and would tell me about the "people who weren't real." It was always much much worse if she had a UTI. And near the end just swallowing was difficult for her, so she would get dehydrated & didn't want to drink and that also made it worse.

 

For us, she went from assisted living to a family care setting, where she lived in a family's home and had 24x7 care. Those people were angels! They were with her, along with my sister, when she died and were so gracious and kind to my mom with all her medical issues. God bless them.

[StephanieZ]

Her fixation right now is her clothes.  She's upset at all the lint balls on them and is picking them off and eating them.  None of us have been able to stop her.  We got her to take her favorite shirt off in favor of another where they don't show up, but that has caused her to move on to her pants.  NO distractions work.  She's upset that we won't help her pull the hundreds of these off.  Her other pants have them too since she has nothing newer here.

 

Any suggestions for that?

 

Oh, and with locking her in the house, it isn't alone.  It's when FIL (or someone else) is also in the house and has the key.  It would stop her from looking for him outside when he's merely in another room in the house.

 

But right now, her eating the lint... ugh!  (sigh)  She won't even throw them in the trash can right next to her instead.

 

And of course, it's something new.  She's worn these same clothes before for days/weeks/years and it hasn't bugged her.  I've now been abandoned by everyone else (BIL and SIL are also here now).  If I leave, she'll just follow me - and keep with it.  We're back out on the porch because I hoped seeing the great outdoors would provide a distraction.  It hasn't.  Nor has any other attempt at conversation, etc.  (sigh)

 

How do regular caretakers handle these fixations?

 

Distraction usually works. 

 

Oftentimes, it is much better to enter "Alzheimer's World" and just agree with her. In this case, you could agree that the lint balls are annoying, and suggest washing them and putting on a "better" pair. Offer her two choices of "better" pants, and see if she goes for it. 

 

And, yes, if the fixation is harmless, then it's usually best to ignore it (when distraction, etc, doesn't work). 

 

If it's any comfort, usually the fixation disappears completely and doesn't recur. She will completely forget about it once an effective distraction has worked. Just don't bring it up again when the "bad" pants come out of the wash! 

 

She might benefit from having something to keep her hands busy. If she can knit or crochet, she might very well remember how if she did it for many years, and a simple project like a scarf might keep her hands busy. With advanced cases, when she can't do much useful with her hands, then folding towels can be helpful. Sometimes folks will give the patient a basket of kitchen towels or cloth napkins to fold. And each day, you can bring back the same basket of (now unfolded) towels if you don't generate enough clean wash to keep her busy. Of course, if she's able to fold clothes, etc, that could actually be helpful. It is really nice to find ways for her to be actually contributing to the family. Asking her for help with a task is often very effective. My mom could help me peel potatoes or similar simple kitchen tasks until her final stroke (that left her bed bound for a few days until she passed away). I think it was really good for her to feel like she was helping and still LIVING. Dusting could be a similar task. Just be sure to give her safe tools/etc. (A microfiber rag, not a can of aerosol spray cleaner!)

 

If she will watch TV/etc, I found "Family" type movies -- those sorts of simple story lines on the LifeTime channel or similar -- like romance novel type stories -- or the romances on some Christian cable channel, had simple enough story lines and not lots of chaos/confusion -- that Mom could enjoy watching them. My mom loved horse and dog movies, so I would choose those sorts of PG/G rated (not scary, not violent) "family" movies that Mom could enjoy, and we'd watch them together (and I could be multi-tasking or leave the room periodically). And, FWIW, I did block FOX News (Mom was a devoted liberal Democrat, so that was not a big loss, lol, but she had lost the ability to identify that it was not "her kind" of news channel, lol. News channels and the weather channel really did ramp up her anxiety. Horse movies, sweet simple romance movies, etc, were MUCH better. There is a big unmet market for dementia friendly media, IMHO. Anyway, if you can find a show she'd engage in, that can be a good distraction.

 

Mom liked puzzles, and she'd do puzzles with me (or a care giver). We bought the "large piece" ones. I started with 300 piece ones and ultimately gradually had to go down to 100 piece puzzles. (Sad.) Unfortunately, she was with it enough to realize that she'd "already done that one" so I had to buy a LOT of puzzles (especially when some stupid caregiver would "help her" with the puzzle by completing it in an hour when it could have kept her entertained for many hours . . .) I think I spent probably 300-500 bucks on those (many) puzzles over the few months when they were working well for us, lol. Of course, I'd be doing the puzzle "with her" but the way to do it was to simply help collect the right pieces and put them in a spot for her to "do" . . . If a "with it" person just plows through the puzzle, then she didn't get much fun out of it and even got discouraged. Grrr. Anyway, you could try that. Look on Amazon at "Ravensburger large piece puzzle"s. They're really nice quality and good size pieces that are easy to handle. They have dozens, all sorts of patterns. I'd start with 100-200 piece puzzles right now, and adjust up or down depending . . . It's fun because it's something Mom had always done at holidays, etc, so it was a familiar activity that felt "normal". 

[creekland]

Distraction usually works. 

 

Oftentimes, it is much better to enter "Alzheimer's World" and just agree with her. In this case, you could agree that the lint balls are annoying, and suggest washing them and putting on a "better" pair. Offer her two choices of "better" pants, and see if she goes for it. 

 

And, yes, if the fixation is harmless, then it's usually best to ignore it (when distraction, etc, doesn't work). 

 

If it's any comfort, usually the fixation disappears completely and doesn't recur. She will completely forget about it once an effective distraction has worked. Just don't bring it up again when the "bad" pants come out of the wash! 

 

She might benefit from having something to keep her hands busy. If she can knit or crochet, she might very well remember how if she did it for many years, and a simple project like a scarf might keep her hands busy. With advanced cases, when she can't do much useful with her hands, then folding towels can be helpful. Sometimes folks will give the patient a basket of kitchen towels or cloth napkins to fold. And each day, you can bring back the same basket of (now unfolded) towels if you don't generate enough clean wash to keep her busy. Of course, if she's able to fold clothes, etc, that could actually be helpful. It is really nice to find ways for her to be actually contributing to the family. Asking her for help with a task is often very effective. My mom could help me peel potatoes or similar simple kitchen tasks until her final stroke (that left her bed bound for a few days until she passed away). I think it was really good for her to feel like she was helping and still LIVING. Dusting could be a similar task. Just be sure to give her safe tools/etc. (A microfiber rag, not a can of aerosol spray cleaner!)

 

If she will watch TV/etc, I found "Family" type movies -- those sorts of simple story lines on the LifeTime channel or similar -- like romance novel type stories -- or the romances on some Christian cable channel, had simple enough story lines and not lots of chaos/confusion -- that Mom could enjoy watching them. My mom loved horse and dog movies, so I would choose those sorts of PG/G rated (not scary, not violent) "family" movies that Mom could enjoy, and we'd watch them together (and I could be multi-tasking or leave the room periodically). And, FWIW, I did block FOX News (Mom was a devoted liberal Democrat, so that was not a big loss, lol, but she had lost the ability to identify that it was not "her kind" of news channel, lol. News channels and the weather channel really did ramp up her anxiety. Horse movies, sweet simple romance movies, etc, were MUCH better. There is a big unmet market for dementia friendly media, IMHO. Anyway, if you can find a show she'd engage in, that can be a good distraction.

 

Mom liked puzzles, and she'd do puzzles with me (or a care giver). We bought the "large piece" ones. I started with 300 piece ones and ultimately gradually had to go down to 100 piece puzzles. (Sad.) Unfortunately, she was with it enough to realize that she'd "already done that one" so I had to buy a LOT of puzzles (especially when some stupid caregiver would "help her" with the puzzle by completing it in an hour when it could have kept her entertained for many hours . . .) I think I spent probably 300-500 bucks on those (many) puzzles over the few months when they were working well for us, lol. Of course, I'd be doing the puzzle "with her" but the way to do it was to simply help collect the right pieces and put them in a spot for her to "do" . . . If a "with it" person just plows through the puzzle, then she didn't get much fun out of it and even got discouraged. Grrr. Anyway, you could try that. Look on Amazon at "Ravensburger large piece puzzle"s. They're really nice quality and good size pieces that are easy to handle. They have dozens, all sorts of patterns. I'd start with 100-200 piece puzzles right now, and adjust up or down depending . . . It's fun because it's something Mom had always done at holidays, etc, so it was a familiar activity that felt "normal". 

 

These are all decent ideas, but unfortunately, she's way past being able to do them (except she can still put napkins around half of the table).  Her balance is terrible, so walking is a chore.  (This is probably why she fell on her one longer escapade - perhaps 2/10ths of a mile.)  She can't stand for long either.  She falls way too often (if walking on her own) for my preferences and it is difficult for her to get up from sitting.

 

TV with any sort of plot doesn't work.  The only exception I've found is she liked Benji, but only because a cute little dog (or two) shows up.  He's new every time, of course. Not every movie, every scene.  Unfortunately, FIL has no desire to learn how to use the DVD player.  I used to be able to get by with the older shows - Andy Griffith, Gilligan's Island, etc - but now it bothers her that she doesn't remember the people in it - every scene bothers her because she forgot when I just told her a name.  Now that she's forgetting family regularly (many times today), I doubt she'll ever remember actors.

 

She's not a puzzle person and gets easily exasperated when she can't do something or something looks "wrong."  I can't count the number of times I've had to straighten throw rugs because they get a little bit "off" whenever anyone steps on them.  (I'm not complaining - it's really the only exercise I get when visiting.   :lol: )  She was a perfectionist in her younger days and part of that sure seems to have stayed with her.  

 

Even the music from earlier wore off (but it's still a nice "go to" for a short period of time - it worked a little as a distraction and she remembered some words and tunes).

 

I'm curious now as to what hubby, BIL, and FIL decided.  They were out all afternoon "picking up wood from the storm," but I haven't been in a position to hear what was said.  I'm not really convinced BIL is as concerned as I am and he's just as much an influence on FIL as hubby is.  Time will tell.

[eternalsummer]

You can find decent people working for agencies and decent people freelancing; there is always someone willing to be paid to take care of your relatives, and in general their labor is pretty cheap (both because half the population does it for free and because it doesn't require a ton of education).  An agency will only pay the worker half of what you pay the agency, so that sucks, because you are essentially asking someone to take care of your relatives in their neediest (and often most difficult) hours for a non-living wage.

 

My in-laws, however, spent *years* finding the right person to take care of DH's grandmother.  Along the way they found some crazies and some decent people.  Their best success, however, was with nursing students from the local university.  

[Harriet Vane]

What about nature documentaries?

 

Just thinking back to when I was hospitalized for a major illness. I didn't have the energy or attention span for much, and I spent the first few days in the ICU watching the hands of the clock go round. When I figured out that the hospital had a cheezy nature channel that was just animals and music, it was such a relief! Sooo pleasant to watch and the music covered the icky hospital sounds. 

 

If you cannot get just nature with music, you might try a documentary with the sound muted.

 

Another option might be a panorama travel show. Some are made from a camera mounted on a drone. 

[zoobie]

If her balance is poor, will she use a walker? Impress on FIL the risks of **him** falling trying to help her. A broken hip or back would be awful for either of course, but hampering his mobility would mean full time care for both of them.

[Joules]

What about America's Funniest Videos?  They are super short segments and never the same people, so no one to remember.  When my son was tiny, he loved these, and my dad watched with him.

 

 

[creekland]

Unfortunately, as I predicted, BIL doesn't see the need for them/us to do any more.  FIL needs to make the decision if he wants help or not and he has the numbers to call if he does.  

 

Personally, I think FIL does want help.  I think it's just too difficult for him to find someone.  I could be wrong.  I might be projecting my own thoughts onto him.  I guess we'll see if he calls any of the numbers - or not.

 

Hubby did get to talk with him (just the two of them) pretty extensively about Alzheimers and what to expect (all from that Alz link).  FIL can see it and could link more things in the "severe" stage to MIL than hubby could, so the "knowledge" is there.  Time will tell about anything else.  FIL has a cardiac appt (for himself) Wed.  I asked what MIL was going to do during that time and hubby doesn't know (sigh).  We can't stay.  Hubby actually does work for a living and we have to go home tomorrow morning.  BIL and SIL also work.

 

It's all pretty frustrating to me TBH.  I'm also batting 0% lately with two other major situations (not at all related to this) over the past three months - all three are situations where something is wrong, there is a better way/option, plenty of others can see the reasoning and agree with it, but the powers making the decision don't really give a hoot and won't budge.  I'm wondering if the days of making common sense/reasoned decision-making are over or if I'm really the one out in left field with my thoughts!

 

But such is life.  When one isn't the decision maker, they aren't and that's the Real World vs the Ideal World.  Tomorrow I'll go back to playing with my ponies and enjoying life with my cat.  They still agree with me... ;)  In another month we'll be back to give FIL a respite.  I'll be bringing a dementia clock and 40's Top Hits (or something like that).  Time will tell what happens in between.

 

I appreciate everyone's help with this situation as the degree of having shifted into "severe" was new to me and at least now I feel "armed" for my job when I'm here.  I'll still admit to being frustrated and wishing I could fix the situation though (sigh).

[Joules]

Unfortunately, as I predicted, BIL doesn't see the need for them/us to do any more.  FIL needs to make the decision if he wants help or not and he has the numbers to call if he does.  

 

Personally, I think FIL does want help.  I think it's just too difficult for him to find someone.  I could be wrong.  I might be projecting my own thoughts onto him.  I guess we'll see if he calls any of the numbers - or not.

 

 

 

It's so hard to ask for help.  It's embarrassing to admit you can no longer do what needs to be done.  Your hubby might mention next time he talks to BIL that as long as BIL keeps insisting that FIL doesn't need help, FIL will keep trying to live up to that.  *I* fell into that trap myself, and I imagine it is even worse for a proud father.

 

It sounds like you and your hubby have done all you can to help this visit.  It may take your FIL a month to digest all the information and be ready to act when you go back.

 

:grouphug:

[Harriet Vane]

Read your update. Ugh. I have walked this road more than once, and I feel your pain. To some extent, still walking it with my beloved inlaws. 

 

It's horrible seeing clearly but trying to convince others who would rather live in denial. And there's no joy in watching your predictions come true.

 

:grouphug:

[StephanieZ]

I'm so sorry your MIL is in such bad shape. Ugh.

 

Don't forget that a sudden decline is VERY often related to an undiagnosed UTI. Don't discount that. I found them several times in just the 18 months Mom lived with us. 

[creekland]

For anyone who is still reading and potentially gleaning useful info, I've chanced upon something that works.

 

When FIL is not around and she gets asking where he is, I've been able to keep her here with me by telling her he's out doing something I know she doesn't want to do.  Hubby and FIL have been out enjoying time together fishing, but each time MIL asks, I tell her they're out cleaning up branches after the storm.  Then I ask if she wants to go "help."  She declines.  ;)  It's worked multiple times per hour now.

 

I chanced upon it because it was the truth yesterday and not once did she want to go join them.  If I say anything else, then she wants to "go look" or "go join them" and will get up expecting me to follow.

 

She's also ok watching the Golden Girls at the moment.  There are enough laugh lines (with a laugh track) in the show that she's mostly happy - as long as "I" don't try to follow the show since she loses interest every few minutes and wonders where FIL is.

 

 

[StephanieZ]

Sounds like you have discovered the core truth of dementia care . . . Keep trying different things . . . and keep doing the things that work! 

 

It's really a lot like parenting! 

 

Hang in there. Your in-laws are so fortunate to have you in the family.