Step In or Be Supportive Adult Child?

Courtek501

Hello. This is my first post. My father has been diagnosed with mild cognitive impairment and I think the doctor is linking it to Alzheimer's. My parents keep confusing me about his diagnosis, probably because they are confused. I went to his appointment and that is what I think I heard. My parents think there is a chance to stop the progression. I understand there is a possibility progression can be slowed with diet, exercise, and medication. I think the doc is saying it cannot be stopped. My father needs to retire anyway, but this diagnosis increases the pressure to retire. He will be 74 in November. They seem to both be in denial and they are not on the same page about the timing of selling my father's business. I feel helpless. How do you know when it's time to step in or if it is better to let them process and figure out their next steps? Thank you!

Rescue mom

MCI often progresses into dementia. Not every single time, but…often. Dementias cannot be stopped, but a couple of Rx drugs may slow the progression. Many say the drugs make no difference, and many of those who do, say they only help a couple of years. Healthy diet and exercise is good for everybody, and certainly better to do than not, but those don’t really fight dementia in the way we think of. But certainly good to do.

If it was me (my mother had Alzheimer’s, now my DH does) I would urge dad to retire and do everything they dreamed of, right now. Do not delay, he may soon not be able, or it’ll be too hard for your mom to handle his inabilities.

The other First Step is wills and financial planning. Dementia care is incredibly expensive; they may want to meet with a lawyer and/or elder financial care expert for planning, if they haven’t already.  Things like Medicaid can be hugely affected by advance preparations and plans. Medicare does not provide any help for dementia; if they have long-term care insurance, that’s great. If not, it’s too late now. The financial burden is enormous. Dementia patients usually need, at least, what’s called “custodial care,” help with meals,,dressing, bathroom duties, bathing, basic supervision (as with a child)—and virtually no agency or insurance covers that, except for specific long-term care insurance.

You can only do so much, or step in so far, but everything you can do to suggest/discuss/urge them to plan those things, I’d say do them. It’s hard, but it will absolutely not get easier. 

Barring some other health catastrophe, you will probably have to start stepping in more and more with support and help. Your mother will almost certainly need help as things progress. No single individual can care for a dementia patient 24/7, they’re just not physically able.

jfkoc

Please do encourage them to get all legal and financial matters taken care of. I would then encourage them to enjoy what ever they want to.

M1

Hi Courtek501, you may want to google the seven stages of dementia.  It seems like many times the docs say MCI when it's really more advanced, but they shy away from the bad news.  You can look at the characteristics of the different stages and see whether you think it's really MCI or if it's already more advanced.  That's for your own information--the advice you've already gotten about getting legal and financial affairs in order is completely spot on.  You want to do that now while he can still sign.

Welcome to the forum.  Lots of good support to be found here.

harshedbuzz

Courtek-

I am sorry you find yourself in this spot. 

This is such a life altering diagnosis that there is a need for time for all members of the family to process the information and what it means to them going forward. But you do have to be watchful for depression and denial in your mom who will likely be the primary decision maker from now on and for anasognosia in your dad. This condition can prevent PWD from being aware of the changes in their own cognition and abilities. 

Some random thoughts-

1. MCI is a real condition that sometimes does not progress. I have known a lot of people whose LO initially got a MCI diagnosis when they probably could have been diagnosed with Alzheimer's or VD. It's almost as if they were being "let down gently". This is especially true when the PWD was a long time patient being seen by their PCP or when the PWD was on the younger side of average. 

Either way, this is a hope for the best, prepare for the worst situation. 

2. The others were spot on that legal documents need to be drawn up now while dad is still competent to sign. Medicaid planning needs to be explained unless your parents are very well set financially. Ideally, you (or a sibling) should be mom's agent on the POA. As dementia is progressive you don't want someone with a cognitive shift/dementia making important financial or medical decisions on her behalf. Executive function skills are often significantly impaired before memory issues are noticeable to others, ideally someone else needs to take over their investments and financial matters; while my mom was in denial and fighting me on having dad diagnosed, he managed to lose $350K daytrading in the market. That's real money we could have used for his care and potentially for my mom's. 

3. The business. This is a tough one. The nature of the business and how much hands on you dad has day-to-day matters here. If he's a doctor, a structural engineer or the like, he should probably step away sooner unless there's a way for him to go to the office and putter around. Dad's presentation matters, too. My dad was socially unfiltered and could be quite insensitive  and even offensive. If his work is public facing, you need to watch that he doesn't sully his reputation and the value of the business because of this.  

4. You will probably do better advising if you engage mom only. Assuming dad's condition progresses, she will be calling the shots. This was really hard for my mother; she was the baby of 9 and "needs" someone to tell her what to do. It was difficult and felt disloyal when she had to make hard decisions that he wouldn't agree with like moving or not letting him drive. 

5. While I wouldn't dismiss "best practices"- exercise, Mediterranean diet and medication- as snake oil. the disease typically wins. One caveat is that this "prescription" can become burdensome for a spouse whose LO is not cooperative or doesn't tolerate the medication. The current medications can help a minority of people with symptoms but they do nothing to dely the progression of the disease even when they work. Many PWD have a strong preference for sweets and junky foods they can eat with their hands. Likewise, many PWD become apathetic and disinterested in the sorts of activities that once served as exercise. 

Good luck.

HB

Rescue mom

Just to clarify a couple things I said (which HB said better),:I said the drugs may slow progression in some people. But more correctly, as HB said, it MAY slow the progression *of symptoms* —and the drugs do not seem to have any effect on many, if not most, people who try them.

And yes, also in my experience and what I hear from support groups, many, if not most, DX of MCI could or should have been the dementia already. By the time a person shows enough symptoms to be tested, it seems they usually already have the dementia. PCPs are notorious for being reluctant to make that Dx, especially if they are a longtime friend/doctor. It’s like they don’t want to deliver news they have no real solution for. (Especially since you said the doc is already “linking it to Alzheimer’s”)  

It’s crucial for your mom to be able to manage and watch the finances ASAP.  So many patients have lost, given away, been scammed out of huge money before anyone else realized what was happening. 

If they did set up any financial plans earlier, make sure your dad is not named as the person to take over from your mom. If so, that must be changed (no big deal to have done, just some paperwork, at least in my case). Many couples who do early financial planning just put each other in charge, if something happens to one. But your dad is no longer capable of doing that for her. Someone else, probably you or a sib, will have to.

Jen M

Hi there!  I was in a very similar situation with my dad about 2 years ago.  The advice you've been given by others is excellent.  My dad had tremendous denial and resistance at first.  The denial improved some but my dad still wanted to control almost all aspects of his life.  Although he was devastated by his diagnosis, he was not interested in really doing anything. There is a great academic center near their house which offered loads of research opportunities, activities, support groups etc.  He (and my mom) was not interested.  COVID, of course, did not help matters.  I found that I was constantly striking a balance between honoring their wishes and being firm when necessary (e.g., driving).  There was so much talk, but hardly any action, so sometimes I had to push (which was hard).  When it came to tough decisions, it was very helpful when family members (other siblings, aunts, uncles) were on the same page, as mixed messages greatly added to confusion.  Luckily, my parents' paperwork and finances were in order!

JJAz

When you get a new diagnosis of AD or MCI the first advice is always, "get your affairs in order."  This is so important because you never know how long you will have.  If the business is dependent on your father's skills and doesn't have a strong 2nd-in-charge that can run the business on a day-to-day basis, start the process to sell NOW.  Your Dad is 74 years old and at this age he could have any type of serious disease pop up in addition to MCI.  It's time.  If Mom and Dad won't listen, maybe you can pull Mom aside and convince her.  Maybe you 3 will need another visit to the doctor to ask clarifying questions.  Tell the doc ahead of time the nature of the advice that's needed.

Rescue mom

Another thing about his business (I’d forgotten this but a former partner came by and it came up): my DH was a partner at his business. If there had been a problem with the work after he was diagnosed, they could have been sued, big and bad. Him working with any level of dementia or MCI would have made it far worse.

What kind of business it is may affect that. It might not be an issue in retail, for example, i just don't know. But it might be something to consider. 

Cynbar

Your title asks if you should step in or be the supportive adult child --- I just want to add that the two are not mutually exclusive. All of the advice above is excellent, but you don't have to come in like gangbusters which will just lead to more problems along the way. It's all about your tone. Talk a lot about how your parents have earned their retirement. Remind them that you want to be helpful, that they took good care of you in the past. Stress that you're all in this together, you all care about each other. Start calling or visiting more often. Sometimes it is easier to get legal affairs in order when you say everyone needs to do this and you are doing it too (this is good advice, actually.) Yes, I do absolutely think that you are going to have to take more control. But push gently and you'll have a lot more success.