Just found this site. Crying. Seeing things differently. Posted the medical details already.
Decided that whatever is wrong, I should be keeping him from wasting more of his 'little gray cells' by upsetting him. Humor the lunatic when necessary. Nothing is more important than him staying functional mentally. Resolved to do whatever he wants (within reason). Find my support from more permanent things: the trees, garden, books, dog....
Trouble is ... "within reason". He had asked for wake up calls so he wouldn't sleep past noon.
Me: "But if you can't sleep during the night, will you email me to cancel the wakeup call?"
Him: "Yes."
He asked again last night, Friday, for a wakeup call this morning (Saturday). He was feeling good yesterday, wanted to do some projects today (Saturday).
This morning no email from him, so I made the wakeup call. Because I had resolved to do everything he told me, without argument.
Him: "I'm asleep... I got no sleep last night...."
Me: "Sorry!"
So I'm crying and posting this, instead of apologizing to him in person and breaking down crying in front of him, which would stress him more.
Please understand that treating him appropriately will make his life easier, and yours too, but none of us knows what is appropriate in all situations and we all make mistakes. This does NOT cause the loss of more little gray cells. The disease progresses on its own timetable. You just don't have that much control over it. Do your best. But don't think that you have to tiptoe around him so that you don't make him worse.
In the wonderful book, "Loving Someone Who Has Dementia," therapist Pauline Boss explains that as we view the losses our loved ones experience, we go through a kind of mourning. It is OK to cry. It is OK to feel sad.
So as these physical conditions are showing some improvement, in theory there is hope that the mental condition and general functioning can show some improvement also. But that's theory and possibility.
So maybe I should adjust to the way it works now, learn 'the wisdom to tell the difference'.... Instead of hoping his old self is in there somewhere and will wake up if I just argue with him in the right way. I AM sure his old self is in there, but is too busy with his meds and such to listen to any arguments from me....
I have a lot of sympathy on the crabby father/husband front. When are they going to invent a pill for patience, or one that will keep me from opening my big mouth and saying something that makes it worse?
Well, when he can't sleep, what he DOES is go to his recliner and get on the computer, emailing to social email lists, doing puzzles, etc. But I was dumb thinking he would REMEMBER to email me too. (I guess I could start reading his social sites and check what times he had posted during the night! But then if I disagreed with his posts I'd be tempted to reply!)
It's an 'on the cusp' thing. On some insomnia nights he would remember, on some he would not. Probably -- at least till further notice -- I'd better default to not expecting him to remember stuff, always expect the worst. Never depend on him acting normal. Even when he is normal for a while, it's like very thin ice; he's always falling through, at the least change in blood sugar, or the least stress or friction.
A couple of nights ago while we were at a grocery, he phoned to say he was through with his shopping and was getting hungry. I should have gone on alert at 'hungry' and dropped the rest of my shopping and taken him to dinner immediately, instead of 15 minutes later. Instead, what went through my mind was that if he was hungry enough, he could walk across the street to the restaurant, start his meal, and I'd join him soon. That would have been a normal reaction, something he often does -- but now I can't depend on him reacting normally, it seems.
Good heavens, why didn't I think of that! Yes, it's obvious. He certainly can set his own alarm, and change it in the night if necessary. Why am I so wrapped up in him that it seemed reasonable for him to ask me and for me to not question it!
Something must be wrong with my own thinking. Thank God I found this group!
" When are they going to invent a pill for patience, or one that will keep me from opening my big mouth and saying something that makes it worse?"
Last week he informed me that I had worse mental problems than he did and he wasn't going to ever speak to me again till I sought medical advice. To calm him down, I took one of his discontinued Bupropions. It did help. ;-)
i shall never forget my mom telling hospice that she knew she was crazy but i was crazier and they needed to get me to my va shrink. i guess it makes sense , if their perception is so skewed, everyone around them must seem nonsensical.
I don't know if you have mental problems or not and if you do whether they are worse than his or not.
What I do know is what has helped me.
When things went bad I cried inconsolably not good when you have kids at home and are trying to run a business. My eggshells were ten feet high.
My PCP knew me well and believed my story and suggested Zoloft. What a difference. It did not make me feel wonderful but it did make me functional. I can still feel the emotions but it is very calming, kind of smooths out the highs and lows and allows me to think calmly. For example recently I have been listening to rants about Marshall law and FEMA camps and how we should move out of the country. I don't get sucked in but actually encourage the paranoia by finding even more outrageous suggestions on U tube etc until it is obvious that the whole thing is ridiculous and I am told just that as a new concept. Of course we move on to other things. There are things I can do to prepare for an emergency like keeping a well stocked pantry and I think everyone should be prepared for disasters like storms and job losses, but I can't change the political situation so why waste my emotions on grown men behaving like little kids.
It might be helpful for you to get some medication of your own. I have been happy with Zoloft but Prozac is probably just as good, for some reason I did not want to take it. Both are now generics so are cheap. I pay $9 for a 3 month supply of 100mg tabs at Walmart. I also have a low dose valium which I can take three times daily but I only take one very occasionally when I need to diffuse my emotions quickly. Many of these medications are not recommended for those over 70 because they can have a cumulative effect and make you really loopy. If you do have something like Zoloft prescribed for you remember it takes up to two weeks to become effective and should not be stopped suddenly.
Go to a psychologist/psychiatrist if you find it helps you to have someone to talk to. I did not find it helpful personally so did not waste the money. Mental illness. and I am not trained in this area, seems to be a very personal thing and each person seems to follow their own path. just as PTSD has different triggers for each person. I don't have PTSD but air raid sirens still make me shudder and WW2 has been over 60 years.
I know it is hard Flora but in many ways youhave managed to detach with love but still be there to help.
One question I have been meaning to ask is was he stable before he went to Vietnam?
On the tactical point of wake up calls, just in case this helps....there is an app for that, actually a few. They place calls to cell and landlines......maybe one less thing you have to personally do. Google free wake up call.
others may want to look at it too. Walking on eggshells is a recognized condition part of borderline personality disorder
I told Veronica this already: I can be patient/condescending when he is ranting and being verbally abusive to me. It's when he gets over it and acts like nothing happened and hugs me -- I feel like crying because I'm still sore from the abuse. But I don't want to stress him by rejecting the affection he is offering at that moment. Veronica had a good solution for that!
Now it's a few days after, we're going to see his new shrink today (2 hr drive both ways). If he is acting all carefree I'll have a hard time not 'harshing his mellow'. So I'll take one of his old 75mg Bupropion now! That has been helping me feel cushioned from the jagged impacts -- like going down river rapids in an inflated boat instead of naked. ;-)
Will be gone all day, won't see any replies till late tonight or tomorrow.
Signing off ... hugs to all!
No contact yet today. Taking a pre-emptive Bupropion 75mg myself now. ;-)
Again briefly. Things went well yesterday, haven't seen him yet today.
I had a check up for memory problems and mental health (including scans etc) around 2009, and the doctor said it was stress from a stressful "living situation" -- meaning this same sort of conflict with my husband (we're still in a sort of 'homestead' where I have to do most of the work about the well, utilities, etc). Then we went to a couples counselor for a year or two, and she thought I was fine, though said she would recommend more support if I wanted it. So I may do that again. I have appointments coming up with that same doctor and our new 'family doctor' that my husband and I often see together. Haven't decided what to say to him.
Last week I started taking my husband's 75mg immediate release Bupropion once a day, near noon. This helped me stay calm through the ups and downs. Last night an unusual thing happened. I woke in the middle of the night feeling very negative, worried, scared. I wonder if this could be sort of a back-swing from the Bupropion? All week I would feel calm during the day, then get sort of negative around midnight.
I still want to avoid conflict with my husband but in case he starts accusing me of crazy things again, I think I should be building a support system for myself, and for my credibility, with our new doctor. Perhaps asking for some counseling for myself with a new counselor. (The old one quit her practice and left town! I think we were her last clients, LOL!)
There's also a 'caregiver support group' I can attend, though it is in a different town.
Back on the old Bupropion dose, he's over being angry, though stressed and weak. I'm out from the pressure of his anger and upsets, and trying a new attitude for myself. During caregiving, instead of worrying and grieving, I'm pretending I'm Cherry Ames, the heroine of a series of YA books about a private duty nurse. She would live with a patient for months, always in some colorful mansion or farmhouse, and have adventures.
Calm, kind, not impatient or anxious to get back to 'my own' stuff -- and pretending I'm getting paid for it! ;-)
So grateful for all the support here! Particularly Carol's tip about the meds.
Love to all!
Whether that's true or false, obviously I need some local support! Luckily there's a group meeting tomorrow, if they'll let me in (phone screening required). We use the same Primary Care doctor, usually visit together, so I want to build some credibility with the Primary, a fast-talking man who seems more in tune with my husband than with me. I usually have good credibility with support groups and with women counselors I see alone, so I've been planning to do this in steps: first the group, then with their guidance a counselor, then with her opinion, talk to the doctor.
I'm upset right now. Obviously the first thing is to call for the screening and hope to get into tomorrow's group. But I keep jumping ahead to think about strategy for the Primary doctor. Insist on going alone, so I can soft-pedal the subject? Let husband go with me so he'll be satisfied?
I want to ask the doctor for some overall checkup stuff: the big blood test that shows if you're low on any vitamins etc; maybe a brain scan or two? See if any obvious physical problems do turn up, before going deeply into possible emotional symptoms. Obviously I'm very shook up about his condition, all the responsibilities I'm having to handle, some estate planning not done, etc.
Since we live an hour's drive from town, there's also some drama about whether he goes to town with me, or (if accepted to the group) I sneak away in my truck before he wakes up.
For that, I'd better go on to bed now!
To be continued....
You are doing a fantastic job
You are no more crazy than the sun comes up each day. So put that out of your mind for good.
The stress you are going through is unimaginable, but it is not going to change, only the way you handle it and you are already working towards that.
You have clearly decided that leaving is not an option.
So calmly and quietly sit down and make a list of the things you would like him to do. Everything like lawn mowing banking, buying groceries, laundry. Don't start making excuses just do it. Then go through the list and check what he currently does not do but you think he should and is capable of doing. Make three containers and label them Flora, Hubby and Bills. on the floor is a can labeled Trash. He can sort the mail and open his own. He never opens yours.
Stop sneaking around. Tell him where you are going, when and why and what time you will be back. What is he going to do shoot your tires out?. If that is a possibility or you are afraid then contact the VA or whatever is appropriate. It's not safe to remain. Develop an escape plan If capable he can take care of his own household. If he wants to live in chaos that's up to him. Having the same Dr may not be a good idea although either or the other can invite participation. He is not there to make hubby do what you want.
I think your denial is fading little by little and know you will eventually get there. It is always sad when some one changes so drastically specially mentally but facts are facts and I am sure your support groups will help.
Stay with us there are others in the same group.
It's wierd. When he's ranting, he's obviously a lunatic to be humored. When he's run out of energy and needy and apologetic, he's to be comforted.
But when he's feeling good, more or less back to normal, being his usual extroverted 'come on let's go!' self -- and I'm wrung out and apprehensive and trying to sort out the new problems he's dumped on me in his ranting -- it's real hard to deep from wanting to cry or disagree with him about the NEW energy spending project. (I've posted about this on the 'spouse' thread.)
When he acts back to normal, I want to treat him as normal. As I normally used to do. Which right now would be either crying and telling him how all this has affected me, or being mad and having a vigorous argument about what to do next, etc.
More later. Thank you SO much for putting up with my posts.
Okay, honesty happened. He called and said he had just got an appointment and invited me to lunch. So I said "Fine, that fits with an appointment I've got."
He drives us and always programs the GPS with an address before we set out. So at the car I gave him a printout I'd made of the address, and the page said "Memory Loss Caregiver Support Group" at the top.
On the way home he said, "So, how was the support group?"
Me: "Somewhat informative. I got some leads to doctors in Town X. But I've already made an appointment with Olddoctor in Town Y. A few years ago I went to him for my own memory problems and stuff and got a lot of scans and tests, and he refrred me to Oldcounselor who checked me out and couldn't find anything wrong except stress."
Him: silence or non-committal
Me: "What are you going to do if they say I'm okay and the problem is in your imagination?"
Him: "For months I've been letting your attacks slide off."
Me: "That's not healthy. Perceiving an attack and letting it slide. What if the problem is perceiving it as an attack in the first place? My voice gets stressed, particularly when you're having trouble hearing so I have to talk loud and slow."
Him: changed subject
Actually I have also been snapping a lot but I didn't want to go any further at this point.
Tomorrow I see the Primary doctor we share. I've told H I don't want to put Shareddoctor in the middle between us so will not get into it with him, just talk about my eye and foot and stuff. Might lightly ask him for some Bupropion and see if he will go for it.
Get well soon! Don't worry about me. Shareddoctor gave me the Bupropion with no mention of H. (If anyone is curious, details are at https://www.agingcare.com/questions/asking-primary-care-doctor-for-welbutrin-for-me-162495.htm?cpage=0&cm=284975&utm_source=Notification&utm_medium=Email&utm_campaign=Answer+Own#284975 )
I think you and the doctors are right that H probably doesn't have dementia. Just when his other problems are happening at once, he walks like dementia and quacks like dementia! So I have to watch what I step in just the same. ;-)
Really I felt like the bad times were a bad dream, all was back to normal. Now tonight he cannot sleep, so he will probably have a bad day tomorrow. I get reality-whiplash with things going back and forth like this.
Going to anohter support group tomorrow.
I hope you can find something that helps bring you joy.
When my mom got insulting in the end, I told her that I knew she was just afraid... but none the less she hurt my feelings. I know we all try our best and sometimes we are hurting, no matter how hard we try not to feel bad, we do. Even if we can tell ourselves intellectually we should not be upset... it is still upsetting.
I hope you can find something to do for you that is lovely and kind, because you give so much kindness to others.