Overlanding with Early Onset ALZ | OVERLAND BOUND COMMUNITY

Overlanding with Early Onset ALZ

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OverlandRS

Rank IV
Member
Adventure

Member III

1,116
Portland, OR, USA
First Name
TJ
Last Name
LoMac
Member #

25937

Edited: I got on a late night rant so edited for clarity.

I have debating posting this to public forums for about 18 months now but since this consumes all aspects of my life I think it is now time. A synopsis of the situation; Back around late 2008 I was planning and preparing for a 3+ year full time Overlanding adventure. My parent started forgetting conversations, becoming agitated, and her personality started to change. I demanded her family doctor do testing for ALZ and told the doctors this was not right I was sure it was ALZ without any result or help. In 2015 I demanded her doctor test her for EO ALZ and refused to leave his office till we got a referral. All the tests confirmed she had ALZ, the doctor said she would not live more than 1 year! Her family went about their lives while I was left to put my plans and life on hold to take care of her. Fast Forward to Dec 2020 and I am still the ONLY full time 24/7 caregiver for her. She hasn't recognized me since my last girlfriend who helped with night duty moved out in Nov 2016 due to behavioral issues. She has no grasp on reality at all, cannot take care of herself in anyway. She knows when she has to use the restroom but needs assistance and is now in Depends. She is often agitated, rude, violent, doesn't sleep, wanders, and refuses to take medicine, or use the bathroom.

I am trying to figure out how to have a life, if I leave the situation and she goes into a facility we loose the house, I leave with zero income, substantial debt from taking care of her and her property, and no savings. I have already lost two paid for fully tuned performance cars, an adventure based based business, and have been selling off toys, major shop tools, gear, and equipment to stay in the home. Suggestions if you have any experience with similar, please?
 
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Ubiety

NorthWest Region Member Rep Seattle WA
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Educator I

5,048
Sammamish, Washington, USA
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Greg
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E
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Re: toilet. Take a look at the cleanwaste system, very civilized with privacy. Link to their web site; can be purchased in bits and pieces or as a complete kit. Recommend a larger privacy tent if you are going to need to assist.
 
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ThundahBeagle

Rank III

Enthusiast III

792
Massachusetts
First Name
Andrew
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Beagle
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0

God love you, you're doing His work. Try to be patient. You wont get to do this over, and her confusion is not her fault.

In terms of the finances - and you may have looked at everything already - but often a Homestead and an Irrevocable Trust of some kind can help. In Boston there's the Cushing & Dolan law firm that specializes in elder care and facility cost issues. You must have a similar set of attorneys out there. If not, call them and maybe they can refer you to someone local.

For your respite, maybe see if your mother qualifies for daycare, or to have a visiting nurse come regularly.

Regarding Overlanding...studies show that regular physical exercise has a positive effect on the brain, whether it be traumatic brain injury or Alzheimers. But it has to be gentle, safe exercise. I also know it's hard to make an ALZ patient do things they dont want to do, and that wandering off and getting lost is a very real occurrence and behavior issues abound.

I personally would stick to day trips a couple times a week with low expectations and a lot of patience and understanding.

Stepping back and realizing that the right thing for her may not be the most fun for you, or may not be fun for you at all, is very sobering. You are something special for stepping up but dont get burned out or her care could suffer.

Call an elder attorney. Call the state, and hospitals, her doctor, and find out every single program or care giving assistance for which she is eligible and take advantage of what is provided. It will help to keep you sane and her safe.
 

OverlandRS

Rank IV
Member
Adventure

Member III

1,116
Portland, OR, USA
First Name
TJ
Last Name
LoMac
Member #

25937

God love you, you're doing His work. Try to be patient. You wont get to do this over, and her confusion is not her fault.

In terms of the finances - and you may have looked at everything already - but often a Homestead and an Irrevocable Trust of some kind can help. In Boston there's the Cushing & Dolan law firm that specializes in elder care and facility cost issues. You must have a similar set of attorneys out there. If not, call them and maybe they can refer you to someone local.

For your respite, maybe see if your mother qualifies for daycare, or to have a visiting nurse come regularly.

Regarding Overlanding...studies show that regular physical exercise has a positive effect on the brain, whether it be traumatic brain injury or Alzheimers. But it has to be gentle, safe exercise. I also know it's hard to make an ALZ patient do things they dont want to do, and that wandering off and getting lost is a very real occurrence and behavior issues abound.

I personally would stick to day trips a couple times a week with low expectations and a lot of patience and understanding.

Stepping back and realizing that the right thing for her may not be the most fun for you, or may not be fun for you at all, is very sobering. You are something special for stepping up but dont get burned out or her care could suffer.

Call an elder attorney. Call the state, and hospitals, her doctor, and find out every single program or care giving assistance for which she is eligible and take advantage of what is provided. It will help to keep you sane and her safe.
Cheers, none of the resources are taking new patients due to Covid-19 according to her Hospice nurse. they only comes out to check vitals once every couple weeks or so. The finances are more complicated and all I can do is honor her wish to stay in the home for the remainder.
 

ThundahBeagle

Rank III

Enthusiast III

792
Massachusetts
First Name
Andrew
Last Name
Beagle
Member #

0

Cheers, none of the resources are taking new patients due to Covid-19 according to her Hospice nurse. they only comes out to check vitals once every couple weeks or so. The finances are more complicated and all I can do is honor her wish to stay in the home for the remainder.
COVID, of course. Lord almighty that's a lot of heavy lifting you are doing. I wish you all the power to do it