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Moving/Next Steps Advice Requested
Posted: Monday, December 28, 2020 8:45 AM
Joined: 11/1/2020
Posts: 13

Hi Everyone,

Thank you for your contributions to this board.  I would greatly appreciate your insight to help me make some important decisions. 

For background: I am 54 and my DH is 59 with EO. He was diagnosed this year, but I believe that his symptoms have been present for at least 7.  He was in denial and resistant to discovery.  We've been married 30 years. His condition is moderate at stage 3 on the scale of 7.  His executive functions are shot. He is very physically fit and able, when activities don't require thinking.  He tries to be helpful but his skills are limited.  We are arguing about his inability to drive.  The doctors say no driving, he feels he can.  I find myself having to do most everything except the dishes, which he enjoys.  I've been the primary breadwinner in our family for more than 28 years.  Currently, I am in transition with my career (unemployed), but consulting some and actively interviewing.  I have a lot on my plate right now.  

Due to my husband's condition, I've sold my dream home that we purchased 3 years ago. We move out in 4 weeks. I am overwhelmed on what to do next.  I don't know where we will live and have been holding off because of a variety of factors including job search, location, how much to spend, style of home, what our next steps should be, etc. Financially, we are ok, but I do need to get back to work since we have been depleting our savings this past year and need insurance. 

Location:  Family lives on the other side of the state. Stay where we are or move closer to them? This impacts my career and network.

Condo or house? We've lived in stand-alone homes since college.  I'm not sure I'm ready for a condo.  Lawn care and outside physical work is something that keeps DH active, which is important.  

Home price:  Do we scale way back to 25% of what we are used to or do an interim step back knowing that we will need to relocate again at some point.  

Progression:  How fast does this disease occur and what can I expect? 

Next steps: Should we just sell everything and go travel?

Honestly, I'm struggling with "losing" everything: Independence, connection, relationship, the luxury life we've enjoyed. This makes me feel selfish and sad. I'm not ready to be a caretaker and I don't want to be.  I enjoy working and would prefer to hire help when it's needed.

Many thanks in advance for sharing your thoughts and experience!

Posted: Monday, December 28, 2020 1:21 PM
Joined: 3/7/2018
Posts: 24

CEOofEverything - I'm in your boat as well and wish I had the perfect answers to your questions.  DH was diagnosed in 2018 at moderate stage at the age of 52, but looking back there are definite signs I can now see dating back as far as 2014.  I too am the sole financial provider for our family of 6 so it is necessary for me to work to support our family of 6. Up until March of this year DH was able to stay at home on his own while the kids went to school and I went to work.  COVID has me working from home which has been an eye opening experience, DH needs someone at home with him 24/7 and I was probably turning a blind eye to things that were happening at home; plus our poor kids were/are doing way too much to help him function with daily activities.  

Up until October of last year, DH was driving around town still on his own. I was fortunate that his car had maintenance issues and I was able to convince him it was not worth the money to fix.  He also had a birthday which required him to take the driving test which after practicing knew he would fail.  One of the easier battles we've had. 

While I know your independence and job are important, I would have to say that living close to family where you have support is vital.  I am blessed to have my sister who lives less than a block away from us.  For reasons unknown to anyone, the freedom DH has to be able to walk back and forth between the homes has been so important to his mental state, lessening the agitation that seems to happening more frequently.  It is also a welcome respite for the kids and me. 

I've been toying with the thought of downsizing our home and purging belongs.  DH has so much stuff that he feels could be stolen at any moment. The hallucinations and delusions bring on a level of anxiety that include hiding items and requiring quite a bit of my time dedicated to finding the same items on a daily basis just to avoid the nervous pacing and reptative questions.  He is not very nice during these outbursts which concerns me with the effects this will have on the kids still living at home.  

We had about two years of more normal life after his diagnosis.  Over the past year, his symptoms are increasing; the doctor seems to be upping the medications more frequently and those reprieve effects are lasting less and less. 

When speaking with his neurologist, he indicated we were about 50% through this battle and that the later stages seem to progress more quickly.  My resolve is waning so have started to look for in-home care a couple days a week to help bolster my strength for the tougher stages that are yet to come. 

It sounds like your LO is still in a good place, make the hard decisions now when you can still rationally communicate with him. We are too young to be dealing with this awful disease.  Hang in there!