RSS Feed Print
Zero Sum Emotions
Posted: Sunday, April 28, 2019 10:51 PM
Joined: 8/19/2016
Posts: 422

‘Tis the season of school awards and graduations. I’ve been to a couple ceremonies in the past week. Take-aways:

I’m proud of and happy for my daughter. She has worked hard and deserves to go off to college, even as her mom sinks farther into dementia.

I tear up with patriotic pride for the kids going to West Point and other military academies or services.  May they be safe and never see war!

I’m so happy for the scholarship recipients and the “first in family to go to college” kids. 

... and I see the news that faithful people are gunned down in houses of worship. An innocent child is tortured and killed by his drug addicted parents. A reckless truck driver causes the tragic deaths of innocents. A crane collapses in Seattle. A local middle school girl commits suicide. And on the plus side, three 20 something men befriend a widow in a bbq restaurant (I hope you saw that story).

So what’s my point? I’m trying to figure that out myself. I’ve never believed in zero sum situations.  I’m a make a bigger pie kind of guy.  Yet I feel more hopeless than ever due to DW’s AD.  I’ve lost some capacity to care about others, and because of my care taking duties have lost the opportunity to “do good works” through career (I taught elementary students) or volunteering.  I don’t want to be retired, but that’s my cover story for being home to take care of DW. I know that I’m making a difference for her, but I’m still young enough and talented enough to make a difference for others. My heart hurts. 


Posted: Monday, April 29, 2019 12:07 AM
Joined: 8/22/2017
Posts: 531

John -- I hear you -- the news is terrible and at no earlier time in history did people live with this 24 hours news cycle, bringing all the bad news from every corner of the globe every day (and of course omitting a lot).

I have been able to keep working, with our son working a graveyard shift and coming home to cover for my husband while I am at school.  I would be out of my gourd by now (only five years) if I were home all the time.

You are doing everything you can for the one person in your life who needs it most, so you have to let all the other needs of all the other people in the universe slide.  It is good that your daughter is able to escape, and I hope that at sometime you will have a second life.


Posted: Monday, April 29, 2019 12:17 AM
Joined: 5/11/2017
Posts: 124

II hear you and can relate. I am retired,but was doing volunteer in 2nd grade.I loved it but decided I shouldnt continue this year because not safe to leaveDH alone. I have found an Adult Day program for dementia persons that may now free me up . I know the feelings of being discouraged some days. This is not what I expected and as DH dementia progresses I can wonder what it will be like , how much will I be able to physically do for him. So A DAY AT A TIME for today. Trying  to help him and myself the best I can!
Posted: Monday, April 29, 2019 8:38 AM
Joined: 4/2/2018
Posts: 4289

It's tough to feel like we can't do anything positive about the negative news stories. It would be nice if Shangri-La was not fictional, and we could all live in it, but that's not the case. We have to live in the real world, and that's not always pleasant. Know that we are EVERYTHING to our LOs, and we have to realize just how much we are doing for them, even though we may often want out. Kudos to all of you.

Posted: Monday, April 29, 2019 11:50 AM
Joined: 12/31/2018
Posts: 531

I'm in a similar situation. I was an elementary special education teacher who retired early to be home with DH. It was about 5 years before I planned to retire. However, I volunteer at my former school twice per week and feel like I'm making a difference to the 19 kiddos in the class I volunteer in. DH started going to an adult day program at a local MC facility in Jan as I was becoming less comfortable leaving him home alone while I was at school. I added a 3rd half-day so I have some time totally for me. I don't think it's good to give everything up if there's a way not to. I want to retain that capacity to care about others, not just DH, although he is my first priority of course.

As far as news, I don't watch as much as I used to. Too depressing.  And if I'm honest, I probably don't care as much as I used to. I mean, I care, I just don't have the mental energy to process it or do anything about all the terrible things out there. At most we watch the evening news and the local news. Total of 1 hour. No more cable news...I don't think it's good for me or DH.


Keep It 100
Posted: Monday, April 29, 2019 1:21 PM
Joined: 2/26/2017
Posts: 583

John1965 wrote:

 My heart hurts. 


I understand. Before my husband was diagnosed at age 55 just over 3 years ago, I was at the pinnacle of my career, always the most helpful, generous, bend-over-backwards to fix everything type, and then in light of this horror, found it harder to genuinely feel like others' really small and petty problems were worthy of the same degree of anguish I was feeling. I had to stop working for a while, for it was my capacity for great empathy that made me so good at what I did, and without that I felt I could not continue at the same level. 


I, too, have one in college and one just out and starting her life after college, and I hope that they, and the rest of their generation, can fix this world, for it feels we are on a very destructive path. Like another poster here, I no longer watch cable news, and only a bit of local, and since I have gone back to work while away I just usually play his favorite music on the Sonos, or let him watch Ken Burns documentaries when he does have the tv on. I am lucky that I only have a 1 minute commute from office to home and pop in and out throughout the day, have cameras to monitor, and I get to send him off daily for a few hours to play tennis (he can't do anything, can't even get dressed on his own, but he still rocks a great tennis game! The brain is amazing...) with an amazing tribe of community friends and acquaintances who help get him around. 

I do hope you are finding the time, if only a couple hours a week, to get out and do something for or lunch with a friend... it helps to keep you grounded in a happier space in your soul, and will help you move forward with the knowledge that there really will still be a life for you again (you have to nourish yourself so that you can be here for both your spouse now and yourself later!)

Take care, May

Posted: Monday, April 29, 2019 7:02 PM
Joined: 4/12/2019
Posts: 328

Dear nowadays,

Your post helped me to understand why my DH kept working so hard for the past three years on the yard and every year it looked worse!

Last year he put over $1000 worth of sod in part of the front lawn (who puts sod in only one part, sod of a different kind of grass?), and this year it was all 'gone' (how can that be?) and tall weeds were growing there.

Even for the past years I have known that he was 'treating the lawn' with the wrong things at the wrong time because he refused to find out what to actually do and because he forgot what he's already done!.  And that was because he couldn't really grasp the entire thing.  He was slowly losing his executive function....his ability to plan and carry out projects.

I'm sorry you are going through this.  I find the hardest part is that he insists on 'decorating' the rooms we live in (we've moved) and leaving piles of things on every surface.  What he is doing affects me, my living space, beyond just being unreasonable and angry and petulant.

He also 'goes to the store' and buys things he already has!  Drawers and drawers full of energy bars.  I can't stand it.

And more beer, wine and liquor.  I know he's drinking too much but I just cannot deal with it.

Is there ANYTHING that can be done about this?




Dreamer Lost
Posted: Monday, April 29, 2019 7:41 PM
Joined: 3/7/2019
Posts: 579

John, I can so relate to your post. I too am becoming more hardened with this disease. No longer able to care so much about others or to even feel.  My empathy is dwindling. The news is 99% horrible so try not to watch it, but I believe I caught all of the headlines you mentioned. Can't help it, the media just keeps repeating over and over all of the terrible stuff   My heart also hurts. (((hugs)))
Posted: Monday, April 29, 2019 10:06 PM
Joined: 8/22/2017
Posts: 531

ElaineD wrote:

He also 'goes to the store' and buys things he already has!  Drawers and drawers full of energy bars.  I can't stand it. And more beer, wine and liquor.  I know he's drinking too much but I just cannot deal with it.Is there ANYTHING that can be done about this?


You could try to take away his credit card, which would probably not go well.  

My type 2 diabetic ALZ  husband buys pastries, candy and toothbrushes -- it's as if  on some level he buys the toothbrushes to compensate for the sugar -- I donate the toothbrushes -- he buys at least two a week --  although of course he has an electric toothbrush at home.

I think you need a geriatric psychiatrist -- there are anti-alcohol medications (naltrexone, I believe) and  anti-anxiety drugs as well.  You might want to get him to a doctor before your trip to France, but you've said he would probably reject any medical input.  Do you have someone travelling with the two of you? 


Mrs. O
Posted: Tuesday, April 30, 2019 12:33 AM
Joined: 8/1/2017
Posts: 310

I find that the news is usually disturbing to my DH (b/c of the constant stream of tragedies, and Trump’s face on the news every day. DH hates Trump).  So I try to just flip it on when I know the weather report will be on. The other problem with watching the news is that DH reads the captions out load, and I cannot hear what the newscaster is reporting. Then he’ll ask me what the story is... I don’t know... I couldn’t hear it!  

Overbuying.... we have ridiculous numbers of eye drops and chapsticks. They’re all over the house, and in the pockets of every piece of clothing that he has. 

BTW.... Welcome back McCott!   Missed you!  

Posted: Tuesday, April 30, 2019 7:43 AM
Joined: 4/12/2019
Posts: 328

Yes, McCott, we are not traveling alone, we are going with our son, his wife, and two of their children.

We are only making this trip at the request of our sons (the one in France and the one going with us on our trip).  Our sons want 'one last time together as a family' since my health, and now clearly DH's decline will prevent any future trips.

Your idea of taking away the credit card is very good.  But we are far from being able to approach him on any restrictions in his activities.

It's interesting that you mentioned Naltexone!  There is a new therapy for pain which is Low Dose Naltrexone.  My Duke Pain Specialist prescribed it for me, and I think it helps.  The dose for alcohol and drug addiction is at least 50 mg/day.  And I take only 9 mg/day.  BUT one side effect is that I no longer want even one glass of wine, AND if I have it, I get no 'buzz' at all.

So there seems no point in adding the calories when wine doesn't even relax me.

My guess is that even tho' my dose of Naltrexone is very low, it affects my response to alcohol!

So it would be a very good idea if he were prescribed Naltrexone.  But he has always rejected the idea of 'seeing a  psychiatrist' and 'taking medications for mood'.

He is far too smart and well educated (and only in ES) to allow anyone else to manage appointments and medications.

I do wonder if he is taking his own medications properly.  He fills his own prescriptions, picks them up and allocates his prescriptions weekly into those medication boxes.

And of course, he goes to the store and buys his own alcohol.

All of your suggestions are marvelous, and we will use them 'down the road' when the time comes.

He is 6'4"  and weighs 220 lb., and he's very imposing.  I think that's partly why I cannot  argue with him or manage him.  He's no longer able to carry on a conversation with any real 'exchange of ideas'.  Just short conversations, and he usually responds negatively to anything I say.

He will always be a 'handful' for sure.

His imposing size is part of why I know I will be unable to carry out physical care.  Since I am so completely disabled, I cannot stand or walk unsupported, and I walk with braces and a walker.  I've depended on him for my transportation and for shopping and cooking, up to this point.  Now that we are in Independent Living, I am much less dependent on him for my own needs.

But I will not be able to help him to the toilet, or manage his showers or dressing.  I almost need help with dressing myself, since shoulder problems make it hard for me to put on my bra.

We are certainly a pair!