Spouse with cognitive problems and finances

J -- Do you think he's a safe driver?
Thinking of you and the general public.

/LarryG

He did pass a recent driver’s test at the DMV, however, he has had a few close calls, driving too fast and not focusing on his driving. I have to tell him to slow down or pay attention to his driving. Yet, recently he did drive from North Carolina to Illinois, thru mountains and a lot of traffic. I have reported his driving to our doctor and she said one more time. when I tell her, she will report him to the DMV.

My husband has been diagnosed with “vascular dementia with Alzheimer’s features”, first diagnosed with “minimal cognitive impairment” 8 years ago, following neuropsych testing. My journey is your journey, except we are further down the path.
Please consider this suggestion- find the registration for your car and make sure it is jointly owned. If not, you take it to AAA or somewhere else, get the form to change it to jointly owned, and sign his name yourself. Here in PA, my husband wasn’t required to be there in person to add me.
Then when it’s time to stop driving, you alone can quickly take the car back to the dealer you bought it from, sell it to them (they’ll let you sign his name) and buy another one (unless you already have your own car). He will be mad, but blame it on the doctor. If you keep “his” car, but with you driving it now, this will make him really mad every time it’s time to go somewhere. He will say the doctor is wrong, you are wrong, etc, etc. If you change to a “new” car, he will not feel “ownership” that you are interfering with by being ridiculous.
Next step- go online to your state’s Department of Motor Vehicles or Dept of Transportation and print out the form for surrendering your drivers license due to age or medical reasons (I printed it out at the Library- he wants to see what I’m doing online). Fill it out and mail it in with the license (get that quietly out of his wallet) and they will mail you back an ID card that looks like the drivers license and uses the last photo he had on his. It’s free in PA. This completely avoids the “hand it over” symbolic nightmare. If he notices it’s gone before the ID comes, just say, “I don’t know, but I’ll order you another one”. The PA ID looks very similar to the DL. Then it can be, “Oh, they sent this one instead, the doctor must have told them no more driving for now.” I often use “for now”- my husband accepts that much more easily than “you can’t”. This was his PCP’s idea.
This may sound to you or others as “under-handed”, but the focus HAS to be on what will work, what will keep you and others safe, what will avoid the tornado of fury from someone whose brain is unable to operate and process information as before.
Finally, please consider consulting an “Elder Law” attorney- Google for “near me”, go quietly yourself. They have an extra certification and know the ins and outs of your state’s laws and can guide you to protecting both of you, for the future. It is really, really worth it.
Daily life is a challenge, but I focus on what works now that dementia has moved into our house 🤣 It is hard to let go of the way things used to be.

For what it's worth, when my husband was not able to draw the time on a clock - 10 to 11, the neurologist said that was the indicator that he should not be driving anymore. He had gone through a STOP sign that same day so I didn't argue. Ian gave up driving willingly, which was a relief since I didn't have to watch him so closely anymore. Now he sits beside me, enjoys the scenery, and compliments me on my driving, with occasional instructions.. Our state is self-reporting - so when his driver's license expired he got a state ID instead.

Bill had been content to let me or daughter Robin drive since Dec of 2019 when we moved back to Phoenix from KY. We lived outside Springfield, a very small town with little traffic wherever we went - and those drivers were extremely courteous. He terrified himself (and me) driving from KY to AZ and then Phoenix traffic. However about 8 months ago he decided he was going to start driving again - by himself (he was always giving me wrong directions and couldn't remember his address by this time) it became time to give up our driver's licenses (me as well as I was running over curbs and missing things I should have been seeing - freeways were also terrifying and I stayed off of them using surface streets). He pitched a fit. Had to take him to the DVM but since we moved used the new address as a ruse. The woman at the DVM had gone through this a lot of times and handled it beautifully, never mentioning he was getting an ID card rather than driver's license. I sold our car. Again, after saying if I could get $300 for it he would be happy, he threw another fit until it registered I got $7000 for it. As soon as the car was gone and only Robin's car there he seemed to forget about driving. Thank heavens.
Lately he has almost fallen and fallen (last one into the bathtub in the middle of the night on a potty run - requiring a 911 call). He ended up in the hospital for 4 days and nursing home for 3 weeks for severely low blood pressure. On home health now. Yesterday he pitched a fit with Karen, the physical therapist. She was trying to show him the easiest way to get up from a fall and some balance exercises. Required a major apology from him. Her Mom had dementia so she was used to the 'joking' and anger to cover what they can't remember or do.
Last night he couldn't remember our niece, who he has always been very close to. And for last few days can't remember Dobby's (one of the kitties that is always on his lap) name. Also hasn't been able to remember favorite great grandson's name. Before it was more mechanical things he was having problems with.
Up and down days.

I thank you for all the information you sent to me.
It is taking me awhile to take in all of it because we have been busy this week.
I like the idea about the ID card instead of a driver’s license. And selling our car
is a great idea, for one reason it is so expensive and then another reason is the next car I buy will be mine.
Finding an Elder Law attorney is something I will pursue soon because it seems to be a protection we will need going forward. I also think a social worker would be helpful. Do you have one available for you?

I think the Elder Law attorney practices all .do the same thing- there is “ala cart “ where you pick what you want done or a “package”. I went with the “package”- it includes everything- the paperwork (updated wills, advanced directives, powers of attorney), social workers who call monthly to check in with you, nurses to help with any health questions you have and help manage care if you want them to (they contact your PCPs, the pharmacy, manage all that). My husband had to go into the hospital and then a SNF for 10 weeks- if I wanted, they would work with the discharge planners, attend the Plan of Care meetings, arrange transportation. Right now I just want the monthly social worker calls, it’s really nice to talk to someone who really understands what you’re going through and always gives me encouragement and some good suggestions.
BUT a HUGE important part of the Elder Law help is that they have a Certified Medicaid Planner who will sit with you and go over everything financial (with complete confidentiality) to make a plan to protect your assets according to the laws of your state. Unfortunately, with dementia, he will most probably require admission to assistive living or a nursing facility for his safety in the future. Once facility admission is necessary, Medicaid will be in the future and your assets before admission need to be carefully looked at, so your legally allowable share is protected for you. It would be very easy to just private pay until your savings as a couple are depleted, but that’s NOT required by your state. You MUST protect yourself. The Elder Law practice Certified Medicaid Planner will really put your mind at ease.
The tipping point in our house was when my husband began to leave the house at night unbeknownst to me, neighbors brought him home. He had become very verbally abusive, shouting, refusing to allow me to help with meds, leaving water faucets on full-blast, etc. One water bill was over $1000, the water authority lady asked if we had a swimming pool :), I put in the faucets that turn off after 2 minutes running, I had signs taped around the house. I really tried which I know you are too. But this well-traveled road has very well-known and inevitable sign posts along the way, so when I feel discouraged, I tell myself it’s time to put your big girl pants on and get moving 😂😂

I need to put on my big girl pants and find an Elder Law Attorney! I am waiting to hear from our lawyer to refer us to someone he knows. I believe recently he did gave us the number of a lawyer who deals with Elder Law but I didn’t understand exactly why I needed this lawyer. From your advice. I now understand why I should be finding one.
Thank you for sharing your information with me and hopefully others in this group will be helped by you as well.

My husband, who has given up driving, taking care of our finances and anything involving home maintenance, has a sweet and gentle disposition, but he has a hard time with physical therapists. He gets angry with them and tells them off. Yet, at home, he'll do the exercises they prescribe when I ask him to. I just have to remind him why he needs to do them. I think he has so little power that when he fires a physical therapist, he feels that he's in control, however briefly. He tests his memory a lot, looks at photographs of family members, asks me who they are, etc. He seems to take this all in stride and doesn't express frustration about not being able to remember.

Still waiting for my lawyer to refer me to an Elder Law attorney. I did some research and found under Medicaid in Illinois that these lawyers are very expensive and we could not afford one. Then I found this:
Someone advised me to hire an Elder Law attorney to help with financial planning and Medicaid. After research, I found this:
Elder Law attorneys are very expensive, anywhere from $3K to $10K. Instead, I am getting in touch with Ombudsman:

Long Term Care Ombudsmen

The LTC Ombudsmen program is a federally funded initiative aimed at helping to resolve the complaints of individuals that reside in nursing homes, board and care homes, and assisted living residences.
While their primary goal is to resolve care issues, they also can provide some counsel on financial matters. They do not charge consumers for their assistance. However, as they are public employees, they will not advise families who exceed Medicaid’s limits on how best to qualify. Instead, they offer factual guidance on the eligibility and application process. They also tend to work mostly with individuals who already reside in nursing homes as opposed to those who are moving into one.

Therefore, LTC Ombudsmen are most relevant to families who have been privately paying for nursing home care and hope to transition to a Medicaid-funded payment for care.

This last paragraph would be us. Has anyone gone with Ombudsman to help them get Medicaid for long care nursing help?