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What would YOU want?
Posted: Sunday, May 19, 2019 8:53 AM
Joined: 4/6/2019
Posts: 30

I wanted to reach out to those of you who are living with ALZ and get your opinion, or try to understand. I'll try to put this in a nutshell.

My husband hasn't been officially diagnosed and we're working on that. We cannot afford our mortgage or any bills since my husband gets fired from every job he gets. I've tried to talk to him hundreds of times about moving in with my folks or moving somewhere much cheaper. He always gets up and just walks away, or says, "I will die in this house. I'm never moving out." (It will be foreclosed on by early fall). 

We've started the separation/ divorce process because the financial/ emotional stress is unbearable and I need to move myself and my children in with my folks for financial/ emotional support. We'll be moving out of state, and as I say, he refuses to come with us, and at this point, I don't even want him to anymore. 

Despite how awful and mean he's been to me the last several years, I still care about my husband's well being. I know it's the disease. I cannot live under the same roof with him, but I want to help from afar. He has no friends or family. I worry about him being homeless. He's asked family members from afar if he could live with them and everyone has ignored his emails. 

What can I do for him if he won't budge? How can I help or show kindness? Do any of you live alone in some sort of tiny home or camper, etc? What would your wishes be? Right now he's had a new job for 2 weeks and he can still drive, shower, make food, etc. Have any of you been in similar situations? How can I still be a supportive friend? I wrestle with guilt every moment of the day. What's been helpful to you on this path? 


Mimi S.
Posted: Sunday, May 19, 2019 12:13 PM
Joined: 11/29/2011
Posts: 7027

Welcome to our world. I'm so glad you found us.

Why no diagnosis? There are other conditions that can mimic dementia. Some are easily fixable. A good diagnosis will check for this.  Do look for a University or Medical School with a dementia dept. in your area and make an appointment. A wait of 3 months is common.

I'd advise against you both moving in with anyone.  Do contact your local Alz. Assoc. office to see what local help may be available. National help line 1-800-272-3900 can give yu the local #. Do call during normal business hours and make sure you are speaking with the local. National will pick up after a certain # of rings.

There is a book you can ask for at your library. Any book by Naomi Feil with the word Validation in the title. It's not an easy read but what you can read on-line is not adequate to teach you her method. However, time spent will be beneficial to both of you.

I hope you are able to use a Certified Elder Law Attorney to get his financial and medical paper work in order.

And take care of yourself!!

Michael Ellenbogen
Posted: Tuesday, May 28, 2019 7:45 AM
Joined: 11/30/2011
Posts: 4463

I would reach out to the Marine Corp and let them know what you are dealing with from a health perspective and you need help in a quick diagnosis as it seems as he may not recognize he is having issues. I would also reach out to a lawyer for his employment issues to get help to file for SSDI but you will definitely need a diagnosis. He may also qualify for money from the Marine Corp if he is considered disabled.


Jo C.
Posted: Tuesday, May 28, 2019 9:53 AM
Joined: 12/9/2011
Posts: 13608

This seems to be a situation without one simple answer.  So; one throws several things at the wall and hopes something sticks.

 It may be worth a call to the Adult Protective Services office in your county and speak to an APS Case Worker to discuss what is happening and what can be done when he is alone and cannot care for himself.  They may not be able to take any action themselves, but they have seen just about everything and may be able to provide some helpful information.

As for not having a diagnosis; this is an important question. What does it mean when you .say you are, "working on it."  Is he refusing to see the doctors?  He would benefit from an urgent Neurology appointment.  If you are using the Veteran's Hospital assistance because he is a former Marine, that can take an awful lot of time to work through the system.  If he can be seen outside the Vets system, you may get faster resolution to a diagnosis; but if you do not have insurance or adequate insurance that would be a financial issue.
 If you are going through the Vets system; then you need an advocate within the system that can get this on an urgent fast track, and these advocates do exist. Each facilility is mandated to have such a person or persons.   You can contact the Vets Social Services department or some of the Veteran's Support Groups outside the hospital system in your nearest area to find out how to access this.

There has been much push to develop living quarters for homeless vets across the nation; you can also find out about such local entities if one exists near you from the same groups mentioned above.

From your writing, it sounds as though he is fairly young since he is still in the working years of his life and you mention children.  He could have Young Onset Alzheimer's or FrontoTemporal Dementia or other young onset condition.  From your writing, it does sound as though he has been experiencing, "delusions," which are rigid false beliefs.  No one can argue a person out of their delusions or reason with them; that is their reality and it is difficult to deal with.  That is why a diagnosis by a dementia specialist is so important; sometimes there is medication that can assist, but all must be based on the medical diagnosis.

NOTE:  Diagnosis is so necessary not only for physical needs and ability to plan, BUT ALSO for rapid application for Disability Income.   The government now has a compassionate fast track system for approving applications for benefits when a person is diagnosed with dementia under the age of 65.  This would be another huge reason why the diagnosis is needed asap.  Applications under this category are processed swiftly.

I so hope you may be able to get answers to your questions and also get a diagnosis; it will be the answer to finding solutions for what is happening.

ALSO:  If you can see an Elder Law Attorney; that would be great.  They are the experts in this sort of situation and all legal matters tied up with dementia, etc.  This specialty has the expertise. Some Elder Law Attorneys will do a first appointment free of charge, but one has to ask about this up front to avoid costly fees.  At such an appointment, one can also get information about Guardianship over a person in your state.  It may come to that.  Some Guardianships are done by family members; others are done by court appointed public guardians.  It is best to have as much knowledge as you can.

In the meantime, as Mimi noted, the Alzheimer's Assn. Helpline can be reached at (800) 272-3900.  If you call, please ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.   They are very supportive, often have helpful information and can also often assist us with our problem solving.

Let us know how you are doing, and I send best wishes your way for the best outcome that can be under the circumstances.


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