Is this my problem or his?

JoseyWales

I know I've posted about this before, but DH just won't sit still. I don't care if he's busy doing something, but it almost always requires my help. Example: salt shaker isn't in the exact spot it should be. So he brings it to me and asks what he should do with it. I say put it next to the pepper shaker. He asks where that is. I say on the kitchen counter. But of course he no longer knows where the kitchen counter is, and is compelled to have the salt shaker put away NOW. I have to get up, smile, take the salt shaker and put it where it should be. And then he's off to the next thing. Which of course requires my help. He can't be put off, I've tried. He's on a new medication, and while it's helped a tiny bit because he doesn't seem so anxious about these things, it's still constant. 

My question - is this now "my problem"? He doesn't stop and wants immediate help. Would medication help ME? I work full time, so I do get breaks from all this while I'm at work. I can't afford to hire someone while I'm home, though. 

Just while I've been typing this he's had me help him change his shirt, brought me a rock, brought me a piece of firewood and asked where he can get water. And now he's back asking me to turn the channel on the tv. Which he isn't watching.

banpaeng

It is not you and I was going to start a thread about loved one wanting to help.  I did not want to hijack the thread about the loved one getting violent or loud.

My wife is always asking to help.  It does no use to tell her yes or no.  She just gets up and goes and this happens all day long.  It never stops.  She sweeps the floor at least 25 times a day.  Of course everything she sweeps up never gets to the can.  She takes out the garbage usually once or twice a day.  It is usually just dumped in the back yard and I have to clean it up  She takes the liner out of the cat trash can and then dumps it also in the back yard.  She then cleans the cat litter and puts in in the can with no liner.  I now have to wash the can.  This is two or three times a week.  She washes dishes but does not use soap.  Have to rewash.  If I say anything her reply is, "you think I am dirty".

This is just the tip of the iceberg.  I am tired and wore out but it never ends.

KatieKat1

JoseyWales...I have felt as if I was the only one experiencing this non-stop activity behavior that my DH exhibits. He never sits, moves furniture around, takes items from the house to the outdoors and visa versa, always moving items in the kitchen that does get in my nerves because I can't cook or clean up with him at my feet and into everything.  He no longer wants to fold cloths...as this was suggested as a way to keep him busy, and no matter what I ask him to do he does not understand.  He gets into mischief if I don't keep an eye on him.

I don't find the Seroquel is working for him any longer and increasing it has caused him to stagger and then not walk.  Celexa has helped his agitation but he needs something for his hyperactivity.  

Sad to say he does many childish things and I know this is part of the disease. It saddens me.

It's not easy working and caring for someone in this condition.  I don't work..retired..but it is an all day adventure keeping up with my husband.

You can believe bedtime is the best part of the day for me....when and if he sleeps.

abc123

Dear Josey, banpaen & KatieKat,

My heart breaks for all of you. I have no advice to offer. But I want you all to know that I’m praying for you and I’m extremely sad for you. I can only imagine how worn out you all are. I’m so sorry. 

Dutiful One

Josey,

I typed out a nice response but when I hit "Post," I got an error message and discovered I'd been signed off the site.  

In brief, I feel the same way. My husband is not as advanced as some here, but has lost most of the ability to "read" people,  has little empathy, and cannot understand any side of things except his own.  He constantly interrupts what I am doing to solve or fix something or to provide support while he does it himself.  He can take care of himself, but he has no motivation to do things that need to be done for me or for our home.  Now he wants me to fix and arrange things for his mother, which I have been refusing to do.  I can only handle so much and she has other children, including one who is POA, to do things for her. He spent the weekend agitated and angry at me, while at the same time dependent on me for a variety of little things.  One of his behavior changes is that if he is agitated, he thinks he's perfectly pleasant and I'm the one who is angry and disagreeable.  If I voice an opinion or lose my head and try to explain something, his response is that I don't understand what he's trying to say.  At one point he got so angry he threatened to leave, and his usual flat affect expression went into one of wild-eyed anger. It was evidence of what one doctor we saw, who accurately described it as having either no reaction or an over-reaction.  He perseverates and obsesses over things to the point where it's easier on me if I go along to get along.  

Because he had the 2nd Covid vaccine on Saturday, I thought perhaps the extreme behaviors were a response to that, either due to a side effect or because of worry (he had a bad headache after the first shot, and I had deep reactions to both mine. He had a lot of nervous anticipation about getting this dose).  I texted my daughter, who is at the end of her nursing program and works in a care facility, asking if she had ever heard of or seen his symptoms as a side effect from the Covid vaccine. Her response was shockingly unlike her; a normally compassionate person, she was cold in her reply, accusing me of trying to involve her in a marital problem and that we all know how dad is, I should get counseling or leave. In the message, and in fact never, have I discussed my marriage with my children.  I guess she was faced with taking off her daughter hat and couldn't do it.  So, I will be crossing "talk to children about their dad" off my list. 

It feels like there is nowhere to turn; are we expected to be pleasant and in a good mood all the time?  Are we allowed to have bad days without being accused of some sort of drama? I went online and made an appointment with my doctor to discuss the possibility of medication.  I work 50 hours a week at a job that has been affected by the pandemic, and with all the stress there, I actually look forward to Mondays just to escape the weekends. Will medication help with that? Who knows.  I have tried that route before and had adverse reactions so maybe I need a different dose or a different type.  

AlyJo

I have similar problems with my husband.  Bringing things to me and asking what to do with it.  I tell him to put it back where he got it but he doesn't always know where that is.  I may never find the item again.  Putting dished in dishwasher into cupboards when the dishwasher had not been run or stopping the cycle and putting part way washed dishes in cupboard.  Also does many of the previous things mentioned by others.  

It was confirmed this week end that my adults kids are just done with dealing with Dad.  Drives them crazy and can't deal with the repetitive conversations and continually fixing the TV when he changes the setting and so on.  I am at a loss and tell them it wont change, I can't fix it.  They just aren't around much anymore and when they are they are short tempered.  Don't yell at me or dad but just seem angry and short tempered.  They will be around me without dad but that is not always possible.  I feel like I am choosing who to be with.  With the frustration of caring for PWD I would choose my kids and grandchildren.  That's not not really a choice.  My choices are being made for me and I am losing my family and friends.  I know there is no answer to this.  Just go forward and what happens happens.

JJAz

Josey,

What you describe is why we have to bring in caregivers to help us, even when we're home.  This is especially true if you're working and can't be interrupted. 

 My life became easier  when I accepted that my FULL TIME JOB was to assist him in whatever way necessary.  When I was able to steal a few minutes (or a few seconds) for myself, I was grateful, instead of EXPECTING that I should have personal time and being upset when it was interrupted.  It takes a different frame of mind and a different level of acceptance.  But when you get there, it's a much easier place to live.

Just something to think about.

JoseyWales

So I thought about if I had accepted that this is my full time job or not. 

I have come to realize that yes, I understand that. 

I slept 5 hours a night each night this week, so that I could do what I needed to get done.

I've jumped up every time he needs help. I've hired caregivers for every minute I'm not here. They take him places, make sure he exercises a ton (lots and lots of walking). I come home, and he demands even more. 

I can't live like this. I don't want to live like this. I'm a slave to his demands, and it seems like some of you here feel that's how it SHOULD be.

Now, I'm tired. I've slept about 20 hours total this week. I'm sure I'll feel better tomorrow after I get some sleep, so don't send back messages about acceptance and other feel-good crap. Just take this as a vent, and let it go.

French

Josey, i perfectly understand you. My partner is certainly less advanced and less agitated than your husband, I sleep 6 to 7 hours per day, also work full time, have children at home... and I am at the end of my rope.

Yet, he spend two small days (10 am- 4:30 pm) at the daycare, I have 8 hours aid per week... and I have just been a caregiver for 3 years now. it is just that this hyper-alertness his really tiring and also that I feel so trapped in this life.

I let him in a memory care for 2 week because I need a break. But I feel so guilty. He is too young to be there. He is aware of what’s happening and very sad, surrounded by sad people. Here we offer him a family life, but at what price for us ?

David J

Josey, no feel-good crap from me!  DW has been pacing constantly every waking minute this week. Two nights ago I woke at 3:00 am to find her pacing, opening and closing the bathroom door and the fed room door. Over and over and over. When I’d get her back in bed, it wouldn’t last. I slept on half hour increments. As soon as I slipped into slumber she would wake me. 

I didn’t get any sleep and I didn’t get my morning me time. She stayed up until 10:00 pm pacing then I got her into bed. It started all over again this morning, but at least I got 8 hours last night. 

Keep the faith!

Dave

banpaeng

Ms Joseywales, I agree with you, you do not need this crap and and you are being robbed.  This is how I feel to.  I worked hard all my life and now I am tied down.  I am a mental and physical wreck.  I would love a respite.  However if mentioned, wife goes into the you don't want me and just throw me away.  Then just put me in a home.  2 minutes she does not even remember this happened.  What I feel like doing is just say OK lets go to the home so I can do something other than take care of her.  I started in 2013, so been doing this awhile.  For the first few years, it was a bother but ok.  Now it is not ok.  

Believe it or not, when I read your post, that was the support I needed.  I don't need a diagnosis or then namby pamby feel good phrases.  Reading the truth is what I want.  Again if someone wants to throw darts, please make sure they hit.  That would feel good compared to this torture.

JoseyWales

I guess it's true - misery loves company. For some reason I feel better knowing that others are having some of the same real struggles that I am. I wish I was a positive person who handled all the craziness with perfect calmness. I don't share most of what goes on with anyone, because, who would believe me?  But for some reason it's nice to know that the same kinds of things go on with all of you. And I have to say, some of you have it worse. 

He's on the move, headed outside. I'm off to check where he went.

TiredSoTired

My first post, please ignore any mistakes.

Like the others, my husband is not advanced enough to be put anywhere so, it’s really just me who provides support and care. This is both of our second marriage (12 yrs) and we have adult children, none together. My children now avoid visiting. His only child (son) has literally moved out of the country PERMANENTLY and doesn’t answer calls or texts for two or three days at a time.

My husband has locked himself out of our car and/or disabled our smart keys for the sixth time in two weeks. It becomes my issue to somehow solve even though I’m at home and he’s miles away because he no longer knows how to google or remember that we have roadside assistance. He’s a quite capable driver if he can actually get inside of the car. He is frequently demanding and has started to become irrationally angry. I am a remote worker for 10 years in an extremely demanding field. I work nights, he either rises at the crack of dawn or cannot rouse himself from the bed at all, but when he is woke he must know if I want the picture frame in the living room to lean to the left or should he straighten it.

What do I plan to do about the two day expired milk. Can I help him text someone, his phone doesn’t work. He can’t get the tv on/channel changed/volume adjusted/turned off/use the remote. But some rare days he does some or all of that stuff without a problem. If I’m trying to sleep it’s “sorry to wake you up but should that bread be left on the counter” or in the bedroom searching for this one picture from high school and opening/closing drawers and closets. He does not do any of his normal household tasks except take the trash out which he starts planning for exactly 36 hours before and reminds me every couple of hours that Monday is trash day.

And the wiggles! What is it??? It’s non stop and sleeping with him is impossible, so now I work nights. He even jiggles his feet in his sleep! He doesn’t wash his clothes anymore unless I scream and make threats but I don’t wash them like he thinks they should be done. I suspect his personal hygiene is following that of his wardrobe. This man was SO meticulous about his appearance and clothing up until the last year, dementia dx 2018.

I try to gray rock him but he becomes petulant and starts waving his arms and hollering. I don’t know who this man is, he’s not my husband, but he’s my husband!

Is this what we are dooming ourselves to? Do we not matter anymore at all? I feel like I’m losing my mind and there is no end in sight. I still love him but I hate “this” him. I’m so sorry for him, for me, for all of you all and your loved ones. This is worst than I ever even could have imagined. If I had future sight I would have hightailed it in the opposite direction from him.

Doityourselfer

Taking care of a PWD and their non-stop activity is extremely difficult, in my experience.  Although my husband no longer paces or moves things around, he can still curse and call me names non-stop when he's in his agitated state.   It's very disturbing and I look forward to the days when this full time job of being his caregiver is over!

banpaeng

Thanks to all who contributed to this thread.  This is the therapy I can use just to prove to myself that I am at least a small sane.

Not sure about others, this is not a rant it, it is every day.

Again THANKS to all who contributed.  I hope more will.

Iris L.

TiredSoTired wrote:

I try to gray rock him 

---

Welcome Tired. What is this?  

Iris L.

Buggsroo

Hey Josey, 

No chicken soup for the soul here or any other feel good crap. 

My husband calls me a *$%& idiot all the time, tells me I am stupid etc. I find myself hating him at times, other times, I understand it is the disease. I guess what it is, we’re supposed to forget the insults, keep cooking, doing laundry, soothing etc. I find I am having trouble with that. I know it is not his fault, but find it hard to forgive the insults. He just forgets it all and is pleasant, but I am still reeling.

His hygiene is questionable and he stinks. I miss the old days, when he showered daily and used his after shave, which smelled so nice. Sometimes, I smell it and get really sad.

He obsesses about tidying up, putting things away. It drives me crazy but I realize it is best to let him just do it. 

It is great to have this forum, I confess I love to watch films about Morocco, where I spent so many happy times travelling. Thanks for listening.

TiredSoTired

Iris L. wrote:

TiredSoTired wrote:

Hi Iris! It’s when you become non reactive and quiet. No emotional reaction, no verbal reaction to whatever they’re doing at the moment. Kinda like a mouse playing dead when it’s under attack. The hope is they’ll get bored with the unresponsive behavior and stop what they’re doing or get bored and go away.

I try to gray rock him 

---

Welcome Tired. What is this?  

Iris L.

Hi Iris!

aod326

OMG Tired - your DH sounds so much like my DH a year or so ago. The constant needing an immediate answer to something really important, like how old is the dog, was a real patience-tester. Especially as I work full-time. Most of the time he was very polite, apologized for interrupting me, but wouldn't actually stop interrupting me! A couple of times he also woke me up with a "Sorry to wake you, but..."

It was when he started getting lost driving and not remembering he had GPS, let alone how to use it, that I started to see the red flags. Our car has a keyless ignition and there were several times where he drove off with the key on top of the car. Twice I found it, once a very kind stranger managed to track us down after finding the key on the road, and once it got lost altogether. As you know, they are really expensive to replace!

I have a pragmatic "task-oriented" personality, (according to the hospice social worker!) so most of the time I just did what had to be done. Earlier today though I was remembering a call I made to my best friend one night a couple of years ago; I didn't even say hello, I just said "My life sucks and it's never going to get any better." Because that's how it feels sometimes.

Pat6177

Thank you all for being so honest. My DH was diagnosed in 2020 and I would estimate that he’s in stage 4. So these are early days and I’m not having some of the issues that you folks are having - yet. But I have often felt “What about me?”. And thought I was being the most self centered person. Thanks for a different perspective.

jmlarue

My take-away on this thread is that NO ONE except another caregiver for a person with dementia can understand the fatigue, the high drama, and the Alice in Wonderland craziness of it all. One would think that the doctors might understand, but I've yet to receive any real practical advice on any of this that doesn't leave me feeling trapped and hamstrung by advice like: don't discuss, don't try to reason, don't complain, don't react, put your own feelings aside, and never, ever raise your own voice in defense. Hells bells! What makes anyone think that caregivers stop being human and are required to put on the shroud of the long-suffering, silent martyr? To be perfectly frank, I think it's a bloody cop out on the part of the so-called professionals. They don't know how to prevent this, effectively treat it, or fix it. They know that it's a daily crap show for the caregivers, but lay the guilt on pretty thick that we should be prepared to put our needs, our feelings, our health and well-being on hold "'til death do us part." God bless those who can do that. I'm tempted to say I can't, but the truth is, I won't. I'm 70 years old. Worked full-time from the age of 15 to retirement at 65. Raised two children. I simply cannot, will not allow dementia to take his life and mine, too. Sorry, not sorry.

banpaeng

What a FANTASTIC takeaway.  That was so well written and spot on.

Thanks

Gig Harbor

I totally agree with your takeaway!!! I plan to come out of this part of our life stronger and everyday I think of things I want to do when I will have the time. Self are is important and no one should ever tell us to put our spouse first 100% of the time.

CStrope

I just had a conversation with a close friend about all of this earlier this evening.  She keeps telling me I have to practice "self care".  I always chuckle, because even before my DH was diagnosed I was completely unable to do that.  So now, with the diagnosis, I can't even fathom anything even remotely close to self-care.

She asked me why I don't do anything for myself.  It took me a while to answer her, but then I decided to be completely honest, and said because I don't deserve it.  My duty is to take care of my DH, not do things for myself.

Wow.....just saying that out loud to her was a huge wake-up call.

karwiy

My heart breaks that you're going through this yet I must tell you that we could be twins - I'm going through the same. No sooner do I exit a room having reassured, affirmed or solved and I get re-summoned by my DH with "dear"..... And back I go and it's something else.  It's a running loop. Knowing that you're out there somehow gives me strength. I hope you receive same in kind. Thank you for your candor - it's helped a ton today.

JoseyWales

I'm re-reading everyone's addition to this thread, and I can't tell you how much it helps to hear about how others are having the same struggles as me. I don't feel so alone.

Most days I manage to keep it together and keep on. Today is a decent day - he's doing no less than usual and I have to struggle to keep up, but my attitude about it is better. At the moment. 

I have a bracelet that says "today". That's my motto. Just get through the day. 

Tucsonbirder

OMG, all of these responses mirror my feelings so completely!  Yes, it is a huge comfort to read these and know that I am not the awful, monstrous selfish person who simply knows she can't be a caregiver that I sometimes feel I am.  It is true that I can't do it, at home.  My DH is 84, and I m 70 in good health and youthful. We're married 31 years.   He was diagnosed with AD 6 yrs ago and is in the moderate stage.  He is still pretty high functioning in ADL's, but short term memory, executive function, and initiative are awful/gone.  My life was becoming narrow and restricted and I just didn't want to do it any more.  I knew I was resentful and bitter and that wasn't good for anyone.  He and I had long discussed when I got to this point, I should find a good care home for him.  I did that and placed him on April 1.  It is a huge adjustment for him, but he is trying.  He gets very sad and anxious at time, but other times, he seems content and likes it there.  It isn't a straight line.  But I know that he is getting excellent care.  He gets a smile from everyone there, instead of my tense face and avoidance.  He is in a place where as he declines, he will know his surrounding and the people there.  My life is very much easier, though not easy.  I can plan my days and evenings, I can do the things that nourish my soul, and I can see a future for myself.  It would not have been possible if I kept him at home.  I just had to, and have to, accept myself as I am, not as the selfless caregiver that some incredible people manage to be.  That isn't me.  I made the right decision for me, and I believe for him.   Please don't anyone feel guilty for not allowing this awful disease to take you as well as your beloved.  You must take care of yourself or can't be any kind of advocate or support for them.  There are options.  Don't do what you think others' think you "should".  Do what only you will know is the right and necessary decision for you.

Buggsroo

My husband is taking aricept and it seems to have helped him. He is less aggressive and quite sweet. He does things that drive me to distraction, but I just keep telling myself it is the disease. Luckily he goes to bed earlier and that helps me a lot, I get down time.

As for doctors and other people understanding our dilemma, not going to happen. I explain what life is like to my doctor and she laughs. I guess what it comes down to, that no one will understand what this is like until they live it. I had fixed ideas about it until this happened in my corner. 

So being saintly, all giving etc. Um no. I take care of myself, it has been hard to stand up for myself but it is imperative that we take care of ourselves. 

Buggsroo

Banpaeng just had to reply to your post about your wife.

My husband always rinses the dishes and puts them away. I now tell him that I will take care of the dishes because I freak when he doesn’t use washing up liquid to clean them. I find bowls that are still dirty that he has eaten out of, and they have dried bits of food on them.

He cleans the kitty litter and flushes the poop down the toilet, a no no here. 

Sadly, he thinks he is helping but it is taxing to deal with this, I continuously thank him, but I just want to scream sometimes.