Noticing Small Progression

Katie Roo

     It's been about 4 weeks since DH was told he had VD.  Since then, I have seen some slight progression, nothing major, which has me understanding more of how I need to be more observant of what he does.  We had lunch at a local sub shop and I went to get drink refills.  Asked him to watch my purse and we would leave when I got the refills.  After I got them, I turned around and he was almost at the door - and my purse was still at the table.  When I mentioned it, he said oh yeah, I did just walk out.  Last night, when locking up for the night, he turned off the porch lights, and put the block in the doggy door - never closed to big door to deadbolt it.  It seems he is focused on one part of something and then doesn't do the next steps.  He has said he has times where he just goes "blank" and does not know why.  He is getting more forgetful - especially about conversations and things he has just read.  Is this how it begins?  

I have just joined the local YMCA to get my body stronger (and hopefully help keep me mentally).  We have met with our financial advisor, who has recommended an elder care attorney, who we will see in a month or so.

Is there anything else I need to do or watch for? 

Gig Harbor

Katie if you do not have full control of your finances you need to do that now. If your husband has any accounts with passwords that you don’t know figure them out now. Everything will fall to you and it is good to set up a schedule for all home maintained so you can keep on top of things. Set up a plan of who will help him should you end up in the hospital for a few days or longer. Parents who have developmentally challenged children do this and we need to do it too.

Iris L.

Katie Roo wrote:

        It seems he is focused on one part of something and then doesn't do the next steps.  He has said he has times where he just goes "blank" and does not know why.  He is getting more forgetful - especially about conversations and things he has just read.  Is this how it begins?  

Yes.  His memory is failing.  Don't rely on him to remember what you tell him or old household routines. 

Iris L.

Ed1937

Katie, you're learning that you can't rely (or expect) for him to do the simplest things like watch your purse. When you expect certain things, and he does not deliver, it just makes it harder than it has to be. You can no longer expect anything from him. It has now fallen on you to check the doors each night before bed. Even if he locks everything the way he should for a few days, your job is now to check it.

And when he doesn't do things you think he should be able to do, it's not because he doesn't want to. It's because his brain is diseased. It may seem that he is trying to make things hard for you, but it's not intentional. It's not his fault. That's the thing that is so hard to get used to when we're beginning this horrible journey. It's hard to accept what is happening, but the sooner we accept it, the easier it will become. 

M1

Yes Katie, this is exactly how it begins---as Ed said, you can no longer assume anything--at some point, even that he will know who you are.  It's so painful to see this and experience it with your spouse, with whom you've shared to much, and of course you DO have this set of expectations--and it is exquisitely painful to realize that you can no longer make any assumptions.  The not knowing you is probably a long way off-but brace yourself, it's awful.  I remember many others, and there are still new ones that come along---like recently, my partner didn't recognize photos of her favorite niece or of the house she built for herself in 1986.  I remember vividly the first time she didn't recognize me, and the first time she didn't know which drawer was the silverware drawer in the kitchen (when she built this house too).  It will take some getting used to, to train yourself and change your thinking, and despite that it will still catch you by surprise.

toolbeltexpert

Katie roo, I want to welcome you to the forum, yes everything all the others have said is true. Your in charge if only silently, building scaffold to support him. It's hard to get a grasp on how much change there is coming. Luckily your ahead of the game and it sounds like your on the right track. 

Keep posting and reading, watch some videos from Teepa Snow and careblazers. 

You are a part of this big family of folks who do know and care.

Stewart

Davegrant

Katie, Welcome to the forum. I am responsible for everything which is the opposite of the way things were done most of our 54 married years. My wife asks me everything even about the smallest task. Then she forgets and does things her way her way. So I have to check things constantly first for safety then for correctness. I started doing our laundry when my granddaughter reported that Grandma was not putting the correct cleaner in the machine. She dries the dishes but seldom puts them in the right place. Its an on/off situation so I have to stay alert. Her short term memory is zero. So, if I tell her something she will forget it almost instantly. She also likes to hide things so I spend a lot of time looking for her purse or money which she wraps in napkins or toilet tissue. These  behaviors usually amount to minor frustrations but they add up. So once I accepted the idea that everything is up to me it is easier. I make mistakes as well. The irony is that I am trying to maintain the standards that she set. Such is this disease.

Ernie123

Katie. I have a suggestion that may be useful to you as your DH condition progresses: keep a journal in which you can make a brief note of any changes you notice and the date. I found it very useful as a reference when talking with the doctor. It is hard to recall after a few weeks or months exactly what happened and when. It helps you be as specific as possible with the doctor and helps them determine if and when meds might be appropriate. It can show changing patterns of behavior. For example, when my DW started having delusions and paranoia many years ago, I could review the journal and see the behavior first appeared in February, occurred three times in March, five times in April. This was useful data for the geriatric psychiatrist instead of me just saying she seems to be having more episodes of paranoia lately. 

She is now in advanced stages of dementia living in LTC but I still make notes about her condition as it changes, more from habit than utility since the PSWS chart twice daily about each resident.

As a caregiver some people find it useful to record their own feelings and symptoms. Journaling is a tool that gives you sense of control, to be more self aware as you need to deal with the stress that is now part of your life.

Katie Roo

Hi, Gig.  I take care of all of the finances, and maintain a spreadsheet of his passwords.  He does have his own checking account, with minimal balance.  So, we should be good there.  Another thing I have to consider that most people don't is that he is an above knee amputee.  For the past 7 years, I have had to think ahead of him to make sure things are together so he is safe.  I do worry about when he gets to a place where he forgets he doesn't have a leg - which can easily result in his falling and getting hurt.  Thank goodness we are not there, yet.