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Spouse or Partner Caregiver Forum
He found me out
This disease is just so hard. DH doesn't want me talking about him to anyone. Ever. He'll share details, but I'm not allowed to. I'm not allowed to have a hard time, because it's not about me. I get that, I wouldn't want to be talked about behind my back.
So I bottle everything up. I go to work, then rush home because he thinks I don't want to be with him. He resents me working. It's a crap shoot on what kind of mood he'll be in when I get home.
I finally opened up with a few details to my mom. Very few. Through facebook messenger. I described an incident that happened, that she witness a little bit of. I explained why DH was confused. I was very respectful about DH's condition.
DH managed to find the message somehow on my kindle. Just when I thought he wasn't capable of managing electronics anymore... and he somehow managed to click on the messenger icon and open up the message. He was TICKED. Ready to leave. In his mind I was making fun of him. He's also now "remembering" things I said about him that I NEVER said. But it doesn't matter if I never said those things, he won't believe me. He hid my kindle - it's been missing for over a week. And in this last week he keep accusing me of more and more that I said. That in reality I never said.
This is just so hard. I have no one to talk to, can't afford to go to a therapist and even if I did I don't have the time to do it. I tried antidepressants, but they are either way too expensive or make me too sleepy. I can't afford to quit working, he's not ready for someone to be with him daily. And I don't know how I'll afford it when that day comes.
I'm just lonely and tired of always being the bad guy. Thought some of you could relate.
Deb, welcome to the forum. Your user name suggests that you need answers. You are in the right place for that!
For those of you who struggle with this, can't you set up a user password so your LO can't read what you are writing? It seems like we are all trying to keep something from the one we care for, and it's hard. But we all need someone to talk to, even if it's only on this forum. Gotta figure out a way to communicate. If you use a password, make sure you log out when you are done.
I knew I wouldn't be the only one doing this in secret. I'm glad there are others that understand. DH isn't really secretive about his disease. He will tell everyone he has a problem with his memory, and then look at me to ask what the name of it is. (For some silly reason I find it really funny that he can't remember the word Alzheimer's.) But he doesn't see it as a problem with anything other than being able to remember things. He feels he has no problem with making decisions or in any other aspect of daily life.
So giving examples about things he does is a big no-no. He has no idea I come to this site. I always log off here when I'm done, and close the window on my computer if he even comes near. The problem last week was with Facebook's messenger. It's an app icon on my Kindle, buried in with a lot of other icons. I have no idea what even interested him in clicking on that icon. Logging off every time isn't a realistic option for me on Messenger on my Kindle.
Deb - your outings sound like what I used to go through. We'd go out with our friends, or over to my parent's house (they live nearby and we often have dinner and play cards with them.) EVERY TIME we left, DH would be mad at me about something that he perceived me having done or said while we were with others. Usually it was something to do with me having talked over him while he was talking. I became hyper aware of this, and then became a crappy conversationalist when with others. But I could never do a good enough job - there was always something I did wrong that made him angry. Ugh. That stage passed, I don't miss it.
He is down to only one card game that he can still play, and even in that game I have to set up his cards after they're passed out, and help him figure out if he can put his cards down. Lots of reminding what to do during a turn. It's a pretty simple game, but he still enjoys playing. Luckily my parents still play cards with us, and DS has recently started enjoying that same game.
IMHO No one, not a spouse, a mother or an adult child is ENTITLED to a personal caretaker whom they get to control.
For your own mental and physical health you have to make this clear from the beginning.
It's not their disease it's your life
My DH could not stop me from talking with friends—he might not like it, he might say don’t do it, but I have to preserve some sanity. I just could not, would not, go along with that. That’s a limit. I give a big ditto to what crushed said.
That said, I would never write anything on FB, even if it’s a so-called private group, that I would not mind the world seeing. That’s not just AD, that goes for anything. FB is not nearly as private, or hard for others to access, as many think.
I might say he has AD, which he knows, but not any details. (Yes it’s a fine line). FB is too easily exposed even if you think it’s private. But I can never understand how anyone can keep it “secret”. Soon enough, it’s going to be obvious to everyone, but you will need help long before that.
Emails and forums can be more protected via accounts and passwords—and making sure to log out every time. People who need to know details—or when I just want to talk—I’ll call on phone or email. If he doesn’t know you have the account, and does not know your passwords, he won’t know to look for them.
As for how he just makes things up and has bad fantasies....that’s really hard. I finally just had to get a thick skin. He’s sick, his brain is not working, parts of his brain are gone...somehow you have to let those accusations flow past you. I wish I could tell you how.
Crushed and Rescue Mom, you are so right on this issue. RM, I wish you could tell me how to let it flow by. I guess that’s easier for some than others. I don’t know if it’s personality, life experiences, or upbringing but I definitely do feel like it is domestic abuse at times. I know it is the disease but I feel it personally. I do draw the line at some point and I am fairly certain I will not be able to care for my DH if he exhibits some of the common behaviors.
JW, yes, it’s the cognitive issues that DH is most sensitive about. He has no common sense and I struggle to redirect him. He is also very quick to jump to conclusions about anything and everything. Then his mind is made up and that’s where it stays. Sometimes I wish he would forget more.
Kay—everybody has to draw a line somewhere. My DH, formerly the ultimate southern gentleman, and still incredibly passive 99.8 percent of the time (so grateful, although it’s not great, but could much be worse), tried abusive behavior twice.
Not hurt, but I’ve told kids and fam. that physical violence means placement, and no one argues with that. (And yea, we checked for UTI, not there).
One thing that helped me (this is so individual, but it’s all I got) deal with his other fails was seeing his brain scans. Huge atrophy and loss, huge and obvious. The first moments were breathtaking, I was gobsmacked, no words. But it later became clear, to me at least, he really CANT do whatever, his brain is...gone. Seeing that in B&W actually helped me accept better.
Hearing “it’s the disease” was just annoying. Like using drunk as an excuse. But seeing actual scans was somehow different.
It’s tough. Yes, I’m POed a lot. Sometimes I wonder what I did in a previous life to deserve this. But we still get through.
Josey, thank you for sharing. You are not alone.
If I share something personal about my DH by phone, I always try to make sure he does not hear what I am sharing. Sometimes DH feels insecure lately. I have been driving at night when we go places and this last time he told me he was going to drive home because he thought my parents were laughing that I was doing the driving. I guess "giving in" is ok as long as he is safe. I guess it is the insecurity kicking in and not feeling like he is in charge.
I am glad I found this group because I have a long road ahead, and things are not that bad right now, but I know it will inevitably change within the next few years.
I appreciate every ones advise in this group and making new friends who understand!
When we traveled. DW had a card in her neck pouch with all absolute vital information about her including her diagnosis. I did too. That way they would not waste tie asking her questions if I keeled over. I had a much shorter version which I handed to the flight attendant or purser on any flight, and to the manager of any hotel. Her pouch had her expired drivers license and a photocopy of her passport and itinerary and a picture of me.
I kept all vital papers.
Let me repeat my opinion No one absolutely no one is entitled to a personal caretaker under their thumb.
Being a caretaker is a negotiated agreement where you have to protect yourself first.
JoseyWayles, I am so sorry you are going through this.
I completely understand.
Do set up a password for this site and never walk away without closing it down.
When my husband first showed signs of Alzheimer's, he would read everything on my computer, print out anything I said concerning him, and highlight the offending words to show me.
He threw my computer in the trash. I found it and hid it in the lawn shed.
If I could not talk to anyone but him, I felt like I was drowning.
He eavesdrops in on all of my phone calls., even yet.
Now he is early to mid stage 6 and mostly cannot find his way around on the computer.
I still am very guarded at what I say or do for I believe where there is a will there is a way.
Even on here I am very guarded. People can be so cruel and quite honestly in my life, I don't need more that. Mostly I do no post, but spend a lot of time reading for my support.
Hang in there.
jfkoc, our family and friends all know, so I only need to be careful with DH. I am sure this is not the case for others on here. I am open for all suggestions, as it is easy to become placid.
My DH thinks I go to the gym to work out when I am going to my Alzheimer's support group. He would only get upset and yell if he found out. I've not been for almost 8 months, as I am not comfortable leaving him for an hour plus.
Mostly I help him with his computer issues, but I still don't ever leave anything open on mine. We share a FB account, as he needs too much help with posting, etc.
As Rescuemom said, what did we do in another life to deserve this.
I laugh at myself because I always think that no one else has "this" problem only to be proven wrong on this site. Grateful for that.
My DW has been after my facebook account for two years and confronts me periodically about her access. After a year I set up an account on my computer for her and put facebook on it. That took care of the situation for a while. But that has run its course and she is no longer satisfied with that. She knows little about computers but just hits keys and actually does quite well for not having any experience with computers. Now she no longer want her account but wants me to close it down and "she can use mine".
I should say that she is in denial about any memory problem and says she is like her friends.
So, I keep her off my facebook account because that is where I have received my support as a caregiver. In addition to the memory issues her major behavior issue appears to be "suspicion" and she will blow up even the smallest point with a million questions about my connection to the person . I am concerned that her access to my facebook will end all "peace" in my life. She goes through all my possessions on a daily basis like my wallet, my papers to see what they are about. I really don't have a problem with that but have drawn the line on the computer. I am concerned that she will contact some female former co-workers where she has based many of her false accusations.
I understand that she is bored but she doesn't go with her friends when they ask her to as she cancels at the last moment feeling she needs to be near a bathroom. This is understandable. It seems to me that what she wants is her friends and activities to be imported to our house at a time when our ability to entertain is limited. I have been doing this periodically but I am not sure it is enough to meet her social needs.
Thanks for letting me vent on your point.
Yikes, Davegrant, you are also under the microscope. It is such a suffocating place to be. I also would like to divest myself from the joint FB account with my husband. Most of our friends are my family and friends, not his. I was put on it with him by our son, who set up the account, as DH needed a lot of help with everything.
Stay strong and do keep finding "your space." My husband became enraged when I said to him after he retired that I had "lost my space."
There were some weeks I talked to no one but my husband. The conversation typically is like this... Me: We need go to recycling this week. DH: uhuh
He has OCD so spends a lot of time "doing things." Later I go into the garage and find the car is full of recycling.
Me: DH, I didn't say we were going today. I need to get groceries first and there is no room to put anything.
DH: I'll go empty the car out.
So, I have learned not to say my thoughts to him, as he hears it as, "right now we are going."
On the plus side, so far he doesn't mind taking everything out of the car if I don't want to make the trip to recycling that day. I still remind myself not to say anything until I really am ready to do something.
At times I do feel isolated and am thankful for the computer, FB and this site.
OMG!! I am living this nightmare every day. As I write this letter, my husband is upgrading our security system. He totally forgot what he wanted initially. NO ONE wants his hordes of junk in the shop. I find myself so unhappy and stressed, I cannot stand it. He drives so bad, I physically shake when I get out the car. He refuses to let me drive. I have to set boundaries and call the doctor. When my FIL's caregiver thought I was coming to talk about my husband, instead of my FIL, I cried for three days. Fast forward two years and things could not be worse. Showers once a week; only changes his underwear twice in a week. Talks to everyone about everything, but me. My husband used to never talk to anyone about anything but me. My FIL passed away four months ago today. I thought I would have years before going through this with my DH.
I just don't know what to do.
Since this post came back to the top, I thought I'd update.
DH was so very upset for about 3 days. He kept bringing it up, saying how I betrayed his trust, etc.
And then he never mentioned it again.
I'm sure he has completely forgotten. But it stays with ME.
I shall now close this browser and hide the fact I've been here. I'll be back to visit soon.
CessnaDM, I am sorry you are going through so much. I know how horrible it can be.
First of all, can anyone intervene with getting him from behind the wheel of a car? You do need help with this. in 2013, my DH was in a bad car accident. But for the grace of God it was not his fault. A large pick up truck turned left in front of him. DH had a lisfranc injury to his foot, when he slammed on the break. I was not with him at the time, thankfully. That was the last time he ever drove. When the doctor released him to drive approximately six months later, our son said his dad could no longer drive. It was met with a lot of resistance, bargaining, and anger. Our son said NO. I hid his car keys and many times mine. After many months of being angry, he stopped talking about it. I can honestly say that over our married life, he was Mad Max behind the wheel of the car. I prayed a lot and looked out the side window when we went places. A new door opened for me when he no longer drove. I finally felt safe in the car.
There is another step, so I've heard where you can ask his neurologist to intervene and contact the department of motor vehicle. Not sure of the steps, but there are probably people on here who do know.
Hi all, I am sorry for all of us going through this. Lost my Mom to dementia in 2015. Now my DH was diagnosed 2 weeks ago, although I already had my suspicions. It irks me that the dr didn’t tell us, which I will pursue quietly. I am split down the middle between being honest with DH, or will it make things worse. He already knows he has problems
I am blessed that he’s also legally blind, so hacking into my stuff is very difficult, plus I’m very protective of it. It is discouraging as he’s losing interest in life very quickly. He hasn’t driven fora very long time either. We have a dog & cat that he loves dearly & are good company while I run errands. I know that this is only a temporary lull in what is to come. Right now he’s grateful I love him.
He has been diagnosed with Alzheimer’s late onset. I’m sure the diabetes doesn’t help either as that’s what’s stealing his eyesight. I can’t keep up with housework. Barely keeping up with running the household. I see by the rest of these posts many of your significant others are much further along than mine. I wish there was a place where I could help some of u with passwords & such. I am adding all of you to my prayer list. I wish there was more we could all do for one another.
I am split down the middle between being honest with DH, or will it make things worse.
Welcome to the forum. This is a good place to get support, have questions answered, and talk to people who truly understand. We recently had a thread on this subject. You can find it here https://www.alzconnected.org/discussion.aspx?g=posts&t=2147545910