Does anyone else have these issues??

Cosmic

Does anyone else have this issue?

Wife of 58 years was “officially” diagnosed with AD in 2014. I say officially because the symptoms were there many years before. Memory loss, loss of words, forgetting details, birthdays, etc.

The past two years I have had to remove all types of junk mail, advertising fliers, news paper sections. Anything that advertises anything from beds to windows to basement repair. If she sees any advertising she says we “have to get that” “We have to do that” TV commercials are absolute killers. Seems like businesses take aim at the elderly. Taking a drive results in going somewhere to buy something.

Grocery shopping is a joke. Make a list and might as well be in piglatin. Buy food that gets moldy and rots. Logic is a meaningless word. “We have that already and you don't eat it”....buy it anyway.

I have learned the triggers and try to change the subject quickly but she get upset when I ignore the statements or walk away to calm my emotional response. Books and counseling say to just walk away, count to ten and if these “experts” had any experience at all other than a paper diploma hanging on a wall to impress someone they would know that you need to completely walk out of a room...which angers the other, you would have to count to at least 2000.

The saying that there is a reason God created garages and basements. Problem is when she walks into the garage or basement she complains that they need new paint, it's cold, it's hot, everything is dirty and on and on.

I am not a patient person and these criticisms and accusations build up after time and boil over. Shouting, yelling, screaming all go into play. Her agitated aggressive behavior gets to the point of her shoving, hitting, scratching and there is nothing I can do but walk further away, lock myself in another room until things calm down. A few hours later she acts as if nothing has happened.

Frustration, confusion, there are not enough words to describe the emotional roller coaster that we go through.

There are no answers that anyone can give. Comforting words are worth nothing, sad, sorry. The persons who say these words will walk away and go home, post some condolence while we as caregivers are left right where it all began. To say anything else except you are not alone is assuring but still does not help. Seven stages? Ha, just progressively worse. There are no ”stages” No one here can define when a new stage begins and an old one ends just steady downward spiral.

After 10 years of this the only real question is when will it end?

Neverends

My.mother is well past the ten year mark and still going strong. I on the other hand am a basket case, just trying to hold my tongue every lousy minute of every day so I don't upset the boat and have a man over board. I shut my mouth day in and day out. I stopped reading  the stages of dementia  because they mean nothing to me now. They need staging for caregivers who are barely hanging on. Sorry for the rant.  I hear what your saying loud and clear. It's a bad day in PA.

Cosmic

Yes, thanks for the reply. I was beginning to think I was the only one who is stretching the rubber band to almost  breaking point. Winter makes things worse than ever. Summer she can go outside and putter on the lawn or garden. Winter she constantly complains about being in a prison, doesn't go anywhere but refuses to go out to eat because of covid. Before if we went out to eat with friends she could not choose off a menu. Unable to make a decision. When she did get something it would sit and get cold almost as if she forgets to eat.

Neverends

Yes, winter months are the worst. Nice  weather brings on new challenges for me  like mother wandering down the road. I'm glad you were able to get out some with your LO but still upsetting  for you Im sure.. Warmer weather  is on its way, hang in there. I share your frustration, thru and thru. This whole disease is traumatizing on every level.

Stuck in the middle

Oh yes.  And the bigger con it is, the more she wants it.  Mail order hearing aids to replace the real hearing aids she got from the audiologist, bags of silver coins, etc.  She was actually a fairly astute businesswoman once.

Neverends

Maybe this is just a bad dream and we will wake up from it soon????

M1

Cosmic I have to intercept the mail and remove all solicitations etc., not so much for the cons but for the animal charities. Fortunately our driveway is a quarter mile long so I have plenty of time/space to toss things in a nearby barn before they ever make it to the house,  she will try to write thousands dollars in donations if I don't intervene. I've turned off the ringers on our phones too. I thought she'd see through that but she hasnt.

You say you're not patient, this disease tries all of us. These boards have helped me enormously in learning coping strategies and what not to argue with. Here it's not human food that's the issue, its pet food, over feeding the animals,, jacking up the thermostat, obsessive cleaning, repetitive speech: if it's not a safety issue, I don't argue or try to correct. Reason has no place most days. Your life will be easier (and you can make hers somewhat better) if you heed the lessons these experienced and kind folks can teach.

Good luck, you've come to a good place.

Cosmic

Oh yes. the constant "cleaning" Bending over to pick up little specs of whatever she sees, wiping down counters, These are not bad things but so nerve wracking I just smile and let it go. No harm, no foul. The turning up heat. Our energy company has to love this. Used to be an old joke about walking into grandmas house and almost falling over because of the heat, now karma has taken effect.  Thermal shock when you are outside shoveling snow in 20 degree weather and then walk into a house that is 75 deg or higher.

A typical day if there is such a thing could be another topic of discussion. Others that do not live this would never believe what a caregiver needs to and must do to be around their high school sweetheart and slowly watch them fail.

SusanB-dil

Hi Cosmic - and welcome to 'here'...

ok,  'you are not alone' does help some...  do you have DPOA and HIPAA access?  Even if you don't have the HIPAA, you can still talk to her doctor, they just can't discuss her case with you. Does she have a neurologist?  Please let the doctor, or at least PrimaryCare, know how agitated she is.

Yes - we get it.  Sometimes it is not so easy to 'remember that our LO is illogical'. but we need to try to remember that.  It IS hard!! and frustrating!!!!!!

M1 and Cosmic - don't know how this would go over with your LO, but MIL did finally get used to the cover we placed over the thermostat.  The type you see in schools, business, that need a key. She pitched a fit at first, but now she doesn't remember it not being there. When she first noticed it (the next day) we used fiblet - safety issue for insurance, via fire department said so...  (maybe even have another party install it, just to make it look more feasible)

I wish we could turn off the phone-ringer, but her sister does call, and we don't want to take that away from her.  She will talk to telemarketers. ugh.  but our dayperson said that she really doesn't understand what they want, and one got frustrated with her and hung up on her. ok, so that was rather amusing. 

The stages do overlap.  and sometimes a person will go back and forth between stages. 'just words' may not 'help', but perhaps a plan of action might.  There are some very wise folks here, and please do check out the 'solutions' tab above.  

I know you are frustrated and need some respite.  Copying from another: The Alzheimer's Association has a 24 Hour Helpline that can be reached at, (800) 272-3900.  If you call, ask to speak to a Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They have much information, are wonderfully supportive and can often assist with problem solving.

toolbeltexpert

Cosmic your not alone, I have found the same things out.Now I do an online food order and pick it up "my excuse is covid" we hardly go in stores any more. Like M1 I get the mail only personal cards for dw make it home.  Home phone is now forwarded to my cell. No calls period. And I am almost ready to give up on stages, like you said it only gets worse. Tv is online no commercials, if she sees a bank commercials that starts the questions about the accounts. It's so hard keeping a pwd isolated from triggers and still try to have a life. And anger and harm are the worst, walking away deep breaths, I am so light headed from deep breaths. But it does help me the person who can still think and remember and keep my dw from that preditors, I can still throw out the moldy food, our frig looks very bare after a clean out. But this is my lot and like you venting here is a part of my care for me.  Thanks for your vent and only God know when this will end.

DrinaJGB

Approaching 12 years and counting.

  Recently had to remove the drawers in DH's bathroom due to his habit of opening/closing ad infinitum--broke one drawer and had to get repaired. So I have placed all of his things on the counter in a basket so he can see them.

Constantly unclogging toilet---he goes a couple days without a BM, so we have elephant-sized ones that clog toilet. I have become a pro at that one.

It never ends. Not until one of us dies I suppose. What a sad concept.

This disease is going to show us all just what we are made of.

carry on---dj

M1

SusanB, turning off the phone ringers was a stroke of genius from these boards.  there are very few people who call us regularly, and I've told all of them--so they know to leave messages and/or let me know by text to my cell phone before they call.  It's worked fine for coming up on six months.  Maybe you could have her sister call at a certain time each day or (if she's capable of it) let you know ahead of time.  It really has helped a ton.  We have landlines for safety reasons; my partner can't use a cell phone any more and when she did it was just a flip phone, never did use a smartphone.

SusanB-dil

Thanks, M1.  Her sister does call on either Saturday or Sunday afternoon, so is already a sort-of regular time.  We could have her call, maybe Sunday afternoon, have ringer on then, and could even answer the phone first.   maybe two other people call her once in a great while, easy enough to let them know to call my cell first.

same here with the cellphone.  hers is long de-activated.

we have totally opposite problem with the mail.  she will ditch the flyers, along with some very important mail that is needed.  Utilities and TV are on auto-pay for her, so why would we need anything else, like from IRS, or insurance co...

Margueritejudy

My sister is only at stage 3-4. I thought I had everything covered by doing auto pay and auto deposit for all her bills/income. However, for “memberships” for example, AAA or American Horticultural Society, they send reminders to send in annual membership fees. Twice now, my sister has received second reminder notices a full month after she sent in the fees and has paid the fees again and has written checks paying a second time. I would think she would have checked her check register, but she didn’t. Also, if it’s a check that might have been written in her prior check register, she doesn’t remember where we keep it. Just a reminder that when you think you’ve got everything covered, something else always comes up.

mommyandme (m&m)

YES! My LO is not my spouse but yes, I have these issues.  

When will it end, please tell me.  

So sorry for this pain and suffering. 

Cosmic

She has completely forgotten how to use a computer. Wants to email friends and I have step by step instructions labeled 1-2-3 etc. She just can't get herself motivated, says she's too busy and has things to do.

Bills are all paid on-line now thank goodness. Check registers are a thing of the past. Quicken makes everything so much easier. 

She does know how to write checks so if we go shopping she will write a check but the stores all do electronic transfers anyway but she doesn't understand how it works. Debit cards are the route to go.

If she wants to see the register I just print out the past months activities but it goes nowhere. She gets lost when she sees it.

Gmom28

My DH was diagnosed with Early-Onset Alzheimer's with the PCA variant in 2017. It's a tough road and we are supposed to be enjoying our lives. Children grown, grandchildren in our lives. But it wasn't God's plan for us. Somedays are very hard others being good. I have found my DH loves listening to music. Every morning I put YouTube on with Country music, 70-80's, to Classic Rock. This calms him down and he even gets up, uses his cane for support and dances along with the music. May be worth a try. God Bless You

LevisHouse

Hi Cosmic - 

You could have been writing about my situation! My LO makes no sense - she just can't reason any longer - and yet she wants to be involved in everything and has an opinion about everything and can't understand when I don't do what she wants (because it doesn't make sense!). And all of the junk mail? She wants to "review" all of it many times and then calls the numbers to "understand why they sent it." And while she can't remember that she just finished eating, she does remember some of the ads and will obsess about them for a couple days until another one takes its place. And the agitation and anger! Oof. That is hard to take. Fortunately, my LO is very small so I'm not too worried about my safety, but I can imagine this is a concern for others. (My LO tried to bite me when I wouldn't let her have the car keys.)

I recently started my LO on medication, which has made a difference. While it hasn't helped with the repetition or lack of reasoning, it has greatly reduced the agitation and belligerence. 

Like you, I wonder when this is going to be over. It is painful to watch my LO decline and it is taking a serious toll on me and my family...

Cosmic

You nailed it dead on. Music helps. I call the days either good ones or not so good ones.

At times it's like a normal day and then sundowning sets in and Hanna bar the door. Never angry at anyone else.

You're right, work, save all the years for a happy retirement together doing things together and then get kicked in the head.

Had to do estate planning a few years back in anticipation of these days.

ImMaggieMae

Another vote here for music as well as singing along with the music. I’m always amazed at how many words to different songs that my DH remembers. Singing along with him can sometimes completely change the mood when he’s feeling agitated and repeating questions.

RunningWorried76

Oh, how I wish my mom was on that end of things that she would obsessively clean. She is the complete opposite. Throws trash on floor wherever she is. Spits food out on the floor or onto the dinner table. Spills drinks. Wipe her dirty hands on her clothes. It's so unsettling.

Cosmic wrote:

Oh yes. the constant "cleaning" Bending over to pick up little specs of whatever she sees, wiping down counters, These are not bad things but so nerve wracking I just smile and let it go. No harm, no foul. ...

Dussing

My dear Mother just turned 94 years last week.  She has advanced dementia (she lives with me, plus several home caregivers who help her with daily tasks - we are all a team).

Suddenly just after her birthday, she lost the plot, her marbles, and forgot just about everything.  She is normally a really nice compliant person, but she was so agitated and belligerent the other night her cg and I were at a loss.  One can't reason with a dementia patient at 1:00am demanding we leave her room so she can "get out".

Fast forward, her Dr suggested a UTI, so she is on an antibiotic now, and I have started melatonin at bedtime to see if she can stay asleep.  She naps almost daily, but the random evenings of being awake for extended periods seems to be increasing.

I haven't called hospice yet, but how do you know when to do this?  Her vitals are all normal, her brain is whacked, when she gets tired she turns into dead weight which is tough to handle as a single person (her daughter).  I have help during the day, but afternoons, and evening until 11pm I'm with her alone.  

This event kind of freaked me out, I hope the antibiotic will help her UTI (provided that is the culprit), but basic functions are decreasing, so I am crushing her pills, hand feeding her, and using her wheelchair with increased frequency. I use her walker in tandom with the wheelchair when I'm alone with her as I am trying to prevent her falling.

What to do?  Thanks, this is all new to me but I am SO GLAD I have my Mum with me and not having her in a facility.  We are fortunate to be able to do this together.....