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He can create a pre-need guardianship document. This names a person as desired guardian in order to avoid a court-appointed one. But he needs to find a person who is willing, able, local, etc.
Otherwise he most likely will end up the ward of a court-appointed guardian. If he is cognitively too impaired to create legal documents, then this will be the probable result.
I would speak with family. No, they would be VERY unlikely to take on hands-on care, but they may be willing to act as your hubby's trustee, managing a Trust after the initial Trustee (you, yourself) dies. That would mean they would place him, or would hire an attorney as Fiduciary to manage his care while there are funds.
An attorney can give you the best options.
Good luck.
Similar story here, similar ages. My husband has Parkinson’s as well. All arrangements made as there is family etc.
He does not have dementia so can decide for himself although reaching advanced Parkinson’s that could change.
I am more concerned with more likely event if I need hospitalization or I am in car crash. He would need immediate help. One arrangement is if I am hospitalized they would take him as well and do social admit or take him to facility. Another scenario if I am not hospitalized but need time alone or am sick he is pre approved for 28 days of respite stay which could be extended with additional pay.
He is a Vietnam War veteran but we are considered too affluent for VA assistance. To ensure his continued care in the case of my death, I have arranged for a corporate trustee to carry out the many duties involving selling our assets, managing money on his behalf going forward, etc. A backup trustee will take care of more personal, and non-financial matters.
This was recommended by our estate lawyer who put together our trust. He does not act as a corporate trustee although many law firms do perform this service.
If he is not already receiving health care through the VA, he needs to get signed up. He only has to have an annual checkup to be eligible to receive a lot of other benefits. We have good insurance and use private providers for the major part of my husband's care. Also there is now a Caregiver Support program that can help you understand just what benefits you might receive on his behalf. The best resource I have found is other caregivers. Many times someone would tell me what they were getting... briefs, ensure, wipes, etc. and I would ask his VA provider and they would say yes they could get that for us.
Depending on how your trust is set up, that may even help you qualify for Aid and Attendance if it has been three years. Keep asking questions.
https://www.va.gov/GERIATRICS/pages/Homemaker_and_Home_Health_Aide_Care.asp
https://www.caregiver.va.gov/
S/he will let be able to discuss care, fiduciary, and management care should you transition before your husband. As well, an estate planner. In essence, an attorney specializing in these areas will know how to handle all of these needs and prepare for the future. All these areas need to be legally covered now while you are actively managing everything, if they aren't already.
I recommend / encourage you to:
1) acquire caregivers on a regular, weekly basis;
2) Make arrangements for you to have extended respites (1-2 weeks) every few months or as you want;
* You cannot run on empty.
* You need to take care of yourself.
* While being grateful to be on good health, you need to do what will benefit you now and over the long run - stress reduction, meditation, exercise, 'FUN.'
* I hope you have good friends / social outlets. If not, start to find outlets for yourself to shift from being 'on' caregiver 24/7.
- What you are doing is hard and you are very young and DESERVE (and need) a full life, in addition to the responsibilities you take on (no matter how much you 'want to' ... you need time to renew and enjoy your own life). I would tend to believe your husband would want you to enjoy your life as much as possible now and in the future.
My heart goes out to you and it is heartfelt knowing how you care for your husband. I hope you care for yourself as you care for him.
Gena / Touch Matters
See an Elder Care attorney for the best advice in how to set it up