Dad recently diagnosed

Hi ltbub0418 - welcome to 'here', but sorry for the reason.

Good you are getting paperwork in order. DPOA and HIPAA accesses very important first steps.

The MRI may or may not help a whole lot. However… if they can find which type of dementia it is, it can help to know what type of meds to give. Different dementias utilize different meds a little better.

You are correct - no two people are alike. If you've met one PWD, you've met one PWD. However, the trajectory is going to be the same.

Here is a 'DBAT' sheet - what most of us here go by - 7 stages: (A lot of doctors use 'less' stage model, but I don't think it is really as accurate nor explanatory.)

https://us.v-cdn.net/6037576/uploads/B0XGDF5TALMA/dbat-287-29-281-29.pdf

Current 'stage' is the one our LO steps foot into, even if for a day or two. Example - MIL is 'stepping' into middle stage 6. mom is about late stage 5.

and yeah - any of us could tell you that we HATE 'this' disease!!

Rule #1: Never argue with a PWD. Rule #1: Must take care of yourself. Rule #2: See rule #1-both of them.

So yes - do make sure you get respite - especially as 'this' moves along.

Welcome. Sorry you need to be here. My guess is that the mri will help the doctor determine the type of dementia and how far along he is. Even still I wouldn’t expect a specific stage (doctors tend to use the 3 stage model). I doubt it will change much. There really is not much the doctor can do. Once they are confident in the diagnosis there is really no reason to put him through any more testing. Don’t expect too much from lifestyle changes. You may eventually find he becomes annoyed by them and refuses. While mom accepted her diagnosis at the time after just one year she was telling me the doctor made a mistake. Anosognosia is very common with dementia and can make things very difficult and dangerous. Anxiety and depression are common with dementia. You will want to have a doctor that is comfortable prescribing this type of medication. It’s great that he was advised to see a lawyer. A DPOA is so important. When my mom was diagnosed (at stage 4) she was told she should not be driving and was not safe to live alone. You might want to ask his doctor about these. They sometimes take this news better coming from the doctor. A patient portal is a great way to communicate with the doctor if you bringing up these topics would anger him. It also makes the doctor the bad guy vs you. Unfortunately some doctors push this decision off on the family. If there is a diagnosis and he is still driving you may want to look at his insurance. Coverage may be void with a dementia diagnosis. A plan B is very important. If you are thinking about assisted living you should know there may be a long waiting list to get in. Finances are another early problem area for a person with dementia. I would advise you keep a very close eye on things. To be honest at stage 4 he should probably not have access to any of his finances. He is incredibly vulnerable to scammers. Some people even have to resort to locking down their loved ones credit. My daughters fil tried to buy a new car when he was probably not even safe to drive. I was surprised to learn early on that a lack of good judgment is a common dementia symptom. I will attach a few resources just in case you haven’t run across them yet. I hope something here was helpful.

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

https://iona.org/therapeutic-fibs-ok/

https://www.creditkarma.com/credit/i/how-to-freeze-credit

https://www.consumerfinance.gov/consumer-tools/managing-someone-elses-money/

You have been given great advice already and your plan sounds great but some practical things to think about are that at some point, assistance with showering and toileting will most likely be necessary and as a daughter caring for a father, you’ll want to think about how both of you feel about that and possibly have that conversation while you still can. I currently have a private caregiver for my dad and they are $32/hr. So just things to think about for down the road.

I attend an in-person group and have heard several stories of PWD causing near financial ruin so you can never so be too careful with financial access.

This is a great forum, you’ll get lots of wonderful advice and support here.

Yes no need to overwhelm him of course, just wanted to throw it out there as something for the future. Unfortunately this disease can move quickly and things you hoped were future needs become present ones. You’ll know when the time is right.

You might want to consider that assisted living also offers social interaction. When my mom lived with my brother (he worked) there were some days she didn’t even get dressed in the morning. She sat all day and watched tv. Al allowed her to make friends, have someone her age to talk to and activities to go to. She did not think she belonged there and let me know regularly, but I think she was happier than being alone all day at my brothers (safer also). In home aid may be able to offer companionship, but it might be hard to find the right one. A facility would also allow you to be his loving daughter vs the bad guy that’s trying to convince him to eat or take a shower. But everyone is different and you know your dad best. This are just things to consider. I’m so glad that he is being cooperative. I hope that continues. My mil was very agreeable and went along with whatever family wanted. My mom is grumpy and angry! I think it just depends on the part of the brain that’s effected. When we put mom on a waiting list (I think there was a refundable deposit required) if we weren’t ready when there was an opening, we just passed til the next opening.

@ltbub0418

You've ticked off many of the boxes around preparing for the future which is great.

I would still have a couple concerns. When you say dad planned financially for end-of-life, does that mean he saved money? Pre-paid funerals? Or has a robust LTC policy that will fund in-home care as long as needed? If there is any possibility that he could outlive his assets and require institutional Medicaid, be careful around things like joint ownership as they could have implications in the 5-Year Lookback to qualify for aid.

HHAs are $30+/hour; if funds are limited it might be a better use of his funds to place him in a nicer MCF once he starts needing care for more than a couple hours daily. One common practice I haven't seen mentioned here yet is the expectation at nicer MCFs that accept Medicaid is that residents will be self-pay for 2-3 years before converting to Medicaid. Direct entry on Medicaid can be difficult as the current self-pay folks get dibs on the limited beds first; this is especially true for "male beds" as the majority of residents in MC are women (in dad's MCF 2 of 11 residents on his hall were men and it was similar at my aunt's place) and the rooms are shared meaning he'd likely need to wait longer than most.

The dad you are having these rational discussions with will become a very different individual as the disease progresses. If anosognosia sets in as it typically does, he may not recognize the need for supervision and refuse HHAs saying he "doesn't need a babysitter". You may need to introduce this person as a cleaner or perhaps a nursing student who needs clinical hours.

H1235 made an excellent point about considering a CCRC with AL that would allow a transition to MC when needed. My aunt had been a widow living alone when she went into MC; she positively blossomed with the activities and social engagement offered there.

My dad was "the money guy", too. He lost $360K day trading when he was in about your dad's stage. You don't get a do-over in such circumstances. I'd cautioned mom to pay attention, but she was in denial and didn't want to "take away his independence".

HB