Too much togetherness

freelancer

I'm new here. My DH developed dementia symptoms since October due to two subdural hematomas on each side of the front of his brain. He had surgery to drain them, successfully, but the dementia symptoms worsened after that. His neurologist now says his symptoms are consistent with vascular dementia but has not made a formal diagnosis.

We're having a hard time adjusting to this situation. The hardest thing right now is that he can't leave me alone. He doesn't remember when I say I need to work for 30 minutes, and comes to find me after 5. I try to tell him where I'm going whenever I leave him in a room, but he calls me back when I'm 10 feet down the hall.

I'm an introvert and need time by myself. I also work at home and need to be able to concentrate. Before this happened, we could spend 3 or 4 hours apart during the day, while I worked upstairs and he watched TV in the basement or ran errands. I've hired home health aides for 6 hours a week of "companionship" but we've only had 6 sessions and he's not used to them yet. He had delusions about one of the aides so I had to ask the agency not to send that individual again.

I've tried writing a note to say that I'm working until a specific time, but that hasn't worked. Does anyone have any ideas? We talk about this all day and it doesn't help.

M1

Welcome freelancer, you've come to a good place, and I'm so sorry this is happening to you. The behavior you're describing is called shadowing--my partner does it too--you can read about it, generally thought to derive from the person with dementia being dependent on you for all their cues.  It is definitely an issue with working from home.  I work in the kitchen because that's where our satellite wifi signal is strongest, and my partner is constantly interrupting me, asking questions, wanting to meddle, "clean the kitchen" while I work.  She is stage 5 (see Tam Cummings stages of dementia if you're not familiar) and has generally forgotten that I work at all or what it is that I do.  So far, I can stop some of it by telling her "I'm working and I have to concentrate now," but it doesn't stop the repeated behavior.  Sounds like you may be beyond that, and you may end up needing a companion for him for however many hours you've got to work.  

Good luck, I'm sure others will chime in too.

Ed1937

Freelancer, welcome aboard. Sorry you need to be here. If you have to work, is it possible to have a caregiver come for the times you have to work? 

Since you're fairly new to this, here are a couple of links that might help.

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/  

Lorita

Hi Freelander,

 What MI said is right.  My husband had vascular dementia - being on a plateau for a while, then decline, then plateau again.  You're the one constant in his life - you're his security blanket and when he's away from you, he's scared and unsure of himself. 

 We ran cattle and were both retired from public work so we were together all the time.  He went with me and helped me feed so it didn't really bother me.  The one thing he did that was frustrating was going through drawers or cabinets and moving things.  I know there are some things I've never found that he would put in a safe place. 

 Try to be patient and, hopefully, the companion will turn out to be a great help once he becomes more familiar with him or her.  Maybe, somehow, you could get him interested in old TV programs.  Charles became interested in sitcoms (never liked them before) but there's lots of old westerns on TV that your husband might like to watch. 

 Good luck - come back and let us know how things are.

harshedbuzz

Freelancer-

Yep, that's shadowing. It's one of those behaviors that sounds benign until you are living it.

The problem with asking for time to yourself to complete tasks is that 1) he doesn't have the short-term memory to recall the request and 2) his orientation to time is likely impaired as well. 

One option might be a day program he could attend while you work. If he continues to seek you when his companion is there, it might make sense for you to work elsewhere or for the companion to take him out of the house for a walk, lunch or trip to the grocery store for you.

HB

Buggsroo

I can relate to this post. I work from home on a part time basis doing newspaper layout. This means using a huge computer hooked up to a VPN network. The odd time my helpful husband will unplug the cables and turn off the plug bar. Poof my network disappears and I have to set up the feed again. He also likes to chat and I have to concentrate or he wants all kinds of things to eat. Sigh.

At night he will come and look for me, he is worried people will break in and attack me. He also has to know where I am in the house. It is sweet but wearying at the same time. I need my alone time to recharge. 

Welcome to the forum, you will get loads of great advice and support here.

freelancer

Thanks for all your responses. It helps to know I'm not alone. I hope he'll get used to the companion aides and we might be able to get our 19-year-old grandson to come sometimes as well. The only day program here is part of a PACE program (a Medicare replacement to keep people home instead of in nursing homes). We don't qualify for Medicaid so would have to pay $3000 or $4000 a month for all his health care, medications, home health care, and the day program. It doesn't seem worth it right now.

He has had no attention span for TV watching unless I'm sitting there with him, but ironically, this afternoon he exercised while watching some Olympics trials on TV, got interested in them, and is now watching football. So I've had some time to read and catch up on things today, thankfully. Maybe having the Olympics on TV will be really helpful.

JudyMorrowMaloney

I sympathize. Mine has been doing the same thing. I too am an introvert and need my space but he just won't get out of my hair. He talks my ear off constantly and it's driving me nuts! Hopefully this is just passes.

Ed1937

Freelancer, we also have the PACE program here. If you are not familiar with everything they offer, please take the time to become acquainted with it. Our program is excellent!