I am at the end of my rope as a caregiver

Welcome Sylvia. You are treating your DH as if he were a fully functioning person, when by your own observation, he is not. Since you tried to get him into an Alzheimer's trial, does he have an Alzheimer's Disease diagnosis? There is a lot of information for newcomers. In the meantime, you have to learn a new way of communicating with him. He should no longer be working or driving or having access to the checking account or credit cards. The members will teach you what to do. If you mean by other issues, that he has a problem with substance abuse or a mental health diagnosis, both are understood here.

Iris

@Sylvia320

Hi and welcome. I am so sorry for your reason to be here but pleased you reached out.

The dementias are about so much more than memory loss. They impact personality and will rob a person of any empathy fairly early on. Apathy sets in which makes them less fun to be around and potentially dependent on others for entertainment. Moods can change; often anxiety and depression that can look like irritability especially in men. Gone also are executive function and reasoning skills.

Sadly, I fear you are in a hair-on-fire situation and will need to act quickly and decisively to keep yourself and your household safe. Given that your DH seems to be in the middle stages and likely has some anosognosia (which would prevent him from being able to recognize his own impairment) this is not going to be easy nor pleasant for either of you. Your DH sounds a bit like my dad in this phase down to the squandering money and sulking off to a hotel.

If you do not have a dPOA to act on his behalf, then that is your first order of business. If you are unable to get this done because of non-cooperation, you may need to obtain guardianship/conservatorship depending on your state. And elder law attorney is the best option for this kind of work.

Having your own non-profit puts you at special risks. It would be very easy for a PWD to violate regulations associate with something like a 501c3, so I would retire him from any role in the organization and remove him from any board or accounts asap. You not only need to protect funds but also your reputations.

I would also shut down his access to the personal accounts or leave him with a debit that has a daily limit you can budget for. You also need to lock down your credit with the 3 major credit bureaus so that he (or a scammer) can't get a loan or open a new line of credit. Mom neglected to do this, and dad financed a new Taurus (his old one was a year old) while she was having her knee replaced. He not only got hosed on the trade-in, he paid full MSRP for the car.

You should probably limit his access to the internet and potentially his phone since he's already demonstrated that he lacks the wherewithal to recognize a scam. You could change the WiFi password when you can't supervise him directly. The internet is no place for a PWD. Dad managed to day-trade away $360K of their investments before he finally forgot his passwords. You don't get a do-over on that kind of loss and you will need money for caregivers and potentially a facility down the line.

If he's the sort of personality who is used to being at the helm, these necessary moves are likely to agitate him. In many respects, this phase of dad's dementia when we were restricting access to his accounts and driving and making decisions about moving without his input was the roughest part.

He was miserable and made it his business to make those around him "as miserable as I am"— his words. Personality seems to persist well into the disease progression. Dad was already on an SSRI, but we found a geripsych who prescribed a cocktail of a low-dose antipsychotic and added an NDRI which helped a great deal. I don't think mom would have been able to keep him at home until a few weeks before his death without medication. Meds and a therapist for her helped as well.

HB

Do you expect him to come back when he has calmed down? Do you have a diagnosis? If not I would tell him the doctor needs to see him for insurance purposes or whatever you can think of that he will agree to. The pcp will probably not diagnose him but can do some blood tests. Pcp will refer him to a neurologist. This appointment may be months out. I would contact the doctor before the appointment to tell him/her your observations and concerns. Do the same thing before the neurologist appointment. Educate yourself on dementia, there is a group here for new caregivers. I strongly recommend the Tam Cummings staging tool, and the article understanding the dementia experience. You will need to change how you interact with him. It won’t be easy. If you try to reason with a person with dementia you will only get frustrated and upset. Unfortunately that often means using fiblits. I would suggest you do whatever you can to stop him from accessing money. Maybe he could “loose” his credit card. People here can tell you horror stories of a lo loosening their life savings. I would recommend seeing a certified elder law attorney. You are probably going to need a DPOA and dementia care can be expensive. I would not make this visit about your concerns for him. Tell him your getting older and want to make sure everything is in order. Maybe talk with the lawyer alone first. Is he still driving, should he be? The pcp may be able to refer him to a place that will do a virtual road test. You have found a great resource in this forum. I’m sure you will get a lot of great advice.

I have found this helpful. It is so difficult to change the way you interact with your lo. I would imagine it being even more difficult with a spouse. Not having that partner there to share in decisions must be difficult.

My husband was diagnosed with Alzheimer’s by a Neuropsychologist recommended by his neurologist, after MCI(mild cognitive impairment). Tonight he said, “you’re making it harder and harder to live with you…why are we still married?,” he said to me after I covered the food he put in the microwave so it wouldn’t splash. I’m in another room and feel better already knowing you are all our here for me, and for you, Sylvia. He absolutely never has understood his diagnosis, why he can’t drive, why he can’t login to our bank account. I’ve tried smiling, calm language, changing the subject, etc., but am at the point where he cannot be left home alone.
Somehow through all of this I am comforted by this discussion as I think of solutions to this situation. It will get harder.
Thank all of you for being there with me.