Dealing with my 'shadow'

SATX

My DW is driving me crazy following and finding me. If I retreat to my office - she not only comes in but stays and wants to know what I'm doing.  Same if I go to the garage to work on a project, go to the closet to change clothes, try to watch a TV show, and worst of all when I'm in the kitchen cooking for us (she can no longer do it or help).  Oops... here she is now.

She has the attention span of a gnat.  My only respite come when I leave in our only car - for a meeting, to run errands, etc.

Ideas?

Lorita

Hi  SATX,

 Nothing that will help.  Your wife is aware that things are getting to be different and I think it scares them.  You are her security blanket - the one stable thing in her life and she needs to be near you to feel safe.   Most, if not all, of us have dealt with this.  Be patient with her - try to understand how she is feeling.  I know it's hard but take a deep breath and enjoy the time you have with her now.  You'll be happy you did.

loveskitties

Hi SATX,

My dad is the same way with my mother.  The only time he isn't is if he is occupied with something else, usually some activity occurring outside that he can watch from inside.

Line of sight is very important to the LO.  Think of a child who has only known a single person in their life.  They want to know that person is still there or they become fearful.

The other thing is that sometimes helps is to announce that you are going to be in another room for just a little bit.  Sometimes this works with dad and sometimes not.

Crushed

DW was glued to me.  She went to every session of my last class.  When I gave consulting reports to the feds she was there.  When I lectured in Europe she was there .She sat in the room while I worked on something.  She went to  the  store wit me  She went to the Irish bar to watch rugby at 7 am .  Sex anytime was fine . We traveled a lot together .  It  lasted about 4 years. 

Davegrant

My DW holds on to me like a drowning victim would hold on to the lifeguard. Here's what I do:

1. Have an adult grandchild come in one afternoon (4 hours) a week. (I pay her)
2. Take DW with me as much as possible
3.  I have given up all of my trips for pleasure so I leave only for essential errands.
4. One of DW's girlfriends has offered her house for a few hours as a drop off point. I use it sparingly. 
5.  My DW sleeps until 10:30 am so I am able to get some stuff done early in the day.
6. If I leave the house I leave a note even though we previously discuss it. 
7. I fear that I will not always be able to follow this plan but I continually assess the safety issues. 

DrinaJGB

Sometimes I just get in my car and take a ride with the music up very loud and scream. Feels better. Then I come back home again.

ChrisBme

She's lost...She's scared... this is how she's telling you!  Love and hold her as much as you can! I would give anything to have my wife shadowing me again! She passed Dec. 16, 2020.

Lorita

Chris is so right - must be a terrible feeling.  Wish I'd have someone to shadow when I get a bit older - and wish I had Charles to shadow me right now.  You just don't know what you have until it's gone.

Paris20

My husband needs to see me at all times. When I go to the bathroom I must lock the door, yet my husband waits nearby, often asking me when I’m coming out. When I’m sitting on the couch, he often grabs my arms or my legs and squeezes me tight. I know it’s a sign of affection but it’s also a way he can hold on for dear life. I am his anchor, I know, but it can be so stifling.

DrinaJGB

Although it is sad for those who have lost their LO, and they now are in the throws of grief  that they alone have to ride ,longing to have them back again---as I did with my father for years, and still miss him terribly; it is harder for those of us who are still in the trenches caring for those we love and have lost already to dementia of some kind. We live with a type of tunnel vision.We are hyper-vigilant, like a watchdog who never really rests. That cortisol keeps coursing through our veins--wrecking havoc on our major organs from the constant state of stress we are in. We are always waiting for the other shoe to drop. And we are just so darn exhausted--longing for respite and relief. I am certain when our LO passes we, too, will miss them terribly. But until then we must carry on the best way we possibly can--keeping our own sanity in check at all times. And seeking support from any port in this never-ending storm.

ChrisBme

I too lived through the "trenches" of dementia.  Maybe not as long or maybe longer than others but I experienced the the pain and anguish! My statements were for support of others and whether or not to accept or reject it is solely up to them. That being said, I am sorry to offend anybody so, I now say goodby to all!

DrinaJGB

ChrisBme--I apologize for offending you. It was never my intention. I merely was offering a different perspective. This is a difficult time for all involved and I am so sorry for your loss and what you are going through. I know the pain of losing someone and never intended to minimize that. Our grief is our own personal experience and we must try to find a way to ride the wave ourselves and make it through the darkness. I have never lost a spouse, but during these years of my DH's long and painful journey with dementia have lost both my brother and only sibling and my father who had helped me cope. I meant no harm and profoundly sorry.

Davegrant

I wrote that last August, and now dw gets up with me when I do so I lost my four hours alone on the computer and thus the support network. It is not only that she shadows me, but she does nothing but complain and/tell me what we have to do about whatever she is seeing.  DW suspicion is part of this whole process. I know that part of the problem is that she has nothing to do. But I am at a loss because she doesn't do anything except wander in the house and take inventory. She often re-arranges stuff. Now she is in another part of the house so I jumped on the computer with the purpose of venting in the event it will help me get rid of some of the annoyance. 

KathyF1

Boy I can relate. DH goes to bed when I do, gets up when I do, follows me everywhere and goes with me on every errand. We are literally joined at the hip. I understand the reason for it but it still causes me to be short tempered at times. If I call a friend he turns the volume off on the tv so he can hear every word I say. The only break I get is if someone drops by to hang out with him. He loves to talk and on occasion a friend will stop by to spend time with him. This  forum helps me, I realize I’m not alone.

extex

I can relate SATX.  This is a phase they get into from time to time.  It happened to my wife early on and continues to this day periodically.  My only advice is to “ suck it up”.  It will probably go away.  However, it may come and go.  Drives you nuts. BTW, ole long time SATX resident here.  AF AD retiree plus AF civilian retiree. Hang in there.. You can do this.

Davegrant

Getting on the computer wasn't enough as DW found me. I finally called my daughter and told her that I needed help. It was hard for me to do as I try not to ask for help, but my daughter said she was planning on coming to town anyway. So, she came over for two hours and told me to run an errand which I did, and it made all the difference in the world for the remainder of the day. I am learning, I hope.

Rescue mom

SATx, and Dave, yes, at least know you’re not alone and vent away. There’s so little else that may help, and there’s plenty of people here who understand. My DH did this for a long time, and “stifling” is a good word. Sometimes did what Drina said, just get in the car and go for a few minutes. Or go for a walk (what I might find when I got back notwithstanding).

There used to be so many jokes about spouses driving each other crazy after one retired from work and was always home. This is worse, and of course no jokes to be found. It’s not as bad now as it used to be, but it still happens. At least now I know it’s probably not going to last as long as before.

I thought maybe he was bored, but almost no activity held his interest for long.

I had to kind of smile when Kathy mentioned her DH turning the TV off to listen to her phone conversations. My DH did the same—and wow, the things he could come up with or imagine from hearing one side. I was amazed at how his mind worked on that, yet he had no interest in talking (or listening) to anyone directly or in person. People could try, and he’d just wander away to another room.

nancyj194

Satx, many of us are in the same boat.  It's just how it is for now. 

Like KathyF and Rescuemom, my DH follows me around and yes, even turns the TV off to listen to every word I am saying during a phone conversation, yet he makes no effort to join in a conversation when our adult children stop by for a visit or we are with friends.  His latest thing to do when we are around people is to sit and say uhuh constantly,  or repeat the last few words I say. He also repeats the last few words while watching TV the entire evening, unless he dozes off to sleep. 

The last few months, he mostly sits with his eyes closed while "watching" TV, still saying uhuh, or while every so slowly eating a meal. 

When we watch TV in the evening, when I leave the room for a minute or so come back, I'll  ask what happened on the show we were watching, he has no idea. 

It is a stressful life we live in.

Rescue mom

This phone thing! Exactly. Gotta laugh to keep from crying. And Nancy, my DH got by for years just nodding and saying “uh huh.” It’s amazing how many people are fine with just that. Again…

FTDCaregiver

Same situation here, my DW shadows all day, attention span is nil and she talks constantly.  Weird, but I've gotten use to it and sometimes can block it out with music playing, online activities like this, play the TV.  She has stuffed animal for comfort, so that helps. Fortunately I have care workers who come in a couple of times a week so I can get out for a change of pace.

Jo C.

Specialists say that in-depth structure and routine are key to the comfort level when a LO is feeling insecure.   That being said, sometimes easier said then done.  Here is a link that says what most links have to say about the dynamic and helpful tips:

https://www.agingcare.com/articles/shadowing-behavior-in-dementia-470434.htm

Sometimes the only thing to be done is to have someone come in to give a break to the caregiver or to have a few hours or days in the week the person goes to Adult Daycare. Eventually the dynamic will drift away, but that is something that strongly varies.

J.

DJnAZ

Everything said here applies to my wife. Zero attention, talks a lot but rarely do I have a clue what she is saying and can't sit still for any length of time. She follows me everywhere, interrupts when I'm on the phone or using the computer but can not answer a simple yes or no question.

I hope to have in-home care starting later this week for a few hours to give me a break. How she accepts a stranger in the house without me around remains to be seen. And when she isn't shadowing me she needs to be watched. I noticed tonight she has been eating Melatonin gummies like candy.

ButterflyWings

I've been thinking about "shadowing" and we haven't had that here, exactly, unless you count me shadowing DH! He is still 100% exit-seeking though not moving as quickly as in the past thank goodness. But the first (and last!) words out of his mouth EVERY day for the last 3.5 years-- can start as early as 4 or 5am -- are some version of "gotta go; time to get ready; gotta get out of here". It is crazy, infuriating, exhausting, and just so sad. 

Because of this and other reasons (drinking or eating anything including mouthwash; clogging the toilet; confiscating electronics/my phone/chargers, etc.), he is truly line of sight. 24/7. And I have been hiding his shoes and outer wear for a long time just to slow him down. Otherwise, the second I step out of the room or am not sitting at his side, he is off to elope (literally out the door in a matter of minutes) or get into something in the next room that is not helpful, or even dangerous. 

This is how the toilet got clogged YET AGAIN, this week; the apples and bananas disappear with shocking speed (he forgets that he ate, and eats again. Can be raw, old, or not even food); and so forth. I literally can't leave him alone in a room for even a minute or something disappears (might find it weeks later like the dried up apple core I found wrapped in a napkin in the dresser drawer recently; might not find it at all) - or he tries to pack a few things and hit the road, Jack. To who knows where.  Usually "to work", or lately to get his dad (long deceased).

Cooking -- he won't sit in the same room with me while I cook, or even help stir anything, so I have to run back and forth from the next room...keeping him line of sight at all times. Seriously. Every day. A couple of times a day. I am the master of the quick trip to grab a drink, meds, pee, etc. My favorite bubble baths? Gone by the wayside with many other things I used to do before AD hijacked our golden years. Which for me hadn't really even started. 

But shadowing him and providing line of sight supervision is what I do, otherwise, the second I move he is not following me...he's off in the opposite direction to get into something that I will have to undo, or somehow figure out what happened from whatever's missing or the disaster that's left behind, or he's into the bathroom for toileting which he can't navigate by himself anymore...it is just a crazy life. 

So, I guess we each have to make the best of whatever version of dementia has landed in our laps! Shadowing sounds nerve-wracking and irritating, but the opposite - going the opposite way to get into mischief or "elope" - is also a challenge. Believe me. Hang in there, caregivers. SATX: maybe it is a good time to get a companion or home health aide introduced - even if only 1 or 2 hrs a week. This will be a need eventually, if you keep your DW at home, and many PWD's resist it at the point of need. Sounds like she wants company (yours), but maybe would accept someone else part time too? If so, you'd be way ahead of the game to get this started and it may even help fill the companionship and engagement need she seems to be expressing.

freelancer

My DH has vascular dementia and I don't know if this will apply to other types. In January I posted here with the same issue (didn't know the term "shadowing" so I didn't find your August post.) In February, he got too aggressive and went to a geriatric psych ward where the psychiatrist started him on depakote (divalproex sodium). It has helped with anger and aggression but had two other effects: he talks about his delusions less, though he still has them; and his attention span while watching TV is longer and he can use the TV remotes more easily. As a result, I'm able to work sometimes for an hour or longer without him interrupting me.

These effects started to wane after about 6 weeks so his primary care provider ordered labs to check the valproic acid level in his blood. It was low, so she increased the depakote dosage and the same effects are back, fortunately for me.

Edited to add: If a medication had been offered to us just for the shadowing, I'm not sure I would have thought it was necessary; I want to be careful about overmedicating DH. But as a side effect of a med to manage his moods and aggression, I'm thankful for it.