What differently would you have done if you knew then what you know now.

Izziecat

My 69 year old DH has not yet gotten the dx except for MCI and Executive issues. 

We are maybe months or a year away. He just lost a job as a result but is starting a new one. He refuses to believe there is a problem. I’ve cried every day for the past two months. We have a 13 year old son who is angry with me because his dad tells him everybody around him believes he is perfectly capable except for me. His new job will not last long. My DH can’t remember one conversation from the next. Sad sad sad...

My question to you is what would have done differently? I just got DH signed up for Medicare B and Advantage Plan. Is that a good plan? Should I have gone with C plus or medigap instead?  What would you have wished you would have known regarding finances during this? My husband sees nothing wrong and sees no need to downsize our house and conserve our finances. Any advice would be appreciated. I’m glad to have found this group. 

CaringMate

Izziecat...I don't think there is a caregiver on this website that doesn't have regrets about their ability to provide care when each day the condition of the loved one changes.  None of us can see into the future and most of us want to try to keep things as normal as possible in the face of total abnormality.  There isn't a day in my decade long journey with my partner that I don't look back and think I could have done better.  I could have exercised greater patience, I could have accepted that his behavior was disease related and not intentional...I could have done everything better in my mind.  Others called me a saint for giving everything I had and everything I knew to do for a man who had no ability to understand what was happening to him and believed that I was the one with the problem, not him.  The person closest is the one they usually strike out at and being a target for their anger is all too normal.  Sad and not fair, but also unfortunately the way it goes.  You can't fix what you don't know is broken so don't be too hard on yourself.  This disease is a marathon and as it manifests it changes behaviors constantly.  Embrace the good days because they will become all too few over the course of your daily lives.  There were days in my journey that the heartache was all too much and I wished for it to be over.  Now that it is, I wish I could have him back.  There are no easy answers and you can only do the best you can on any given day.  I will pray for you as I do for everyone on this site.

King Boo

I don't love Medicare Advantage plans unless you have an incredibly competent, willing to recognize their limits primary care physician.  It is not fun to have to fight for referrals to a geriatric psychiatrist or specialist in time of need.   But, there can be situation specific circumstances where they are advantageous. Don't rely from 'specialists' that represent the plan for advice.  You would would do well to find an independent advisor.

Your 13 year old needs support most of all.  He needs to be able to come to understand what is going on and a therapist can be a reliable ally for him throughout this journey.  I would alert guidance at his school about your situation as well.  

You most certainly need to consult with a Certified Elder Law Attorney (CELA) to best plan for this - always needed for a PWD, for those with children, even more imperative.  Your responsibility is first to your child, second to the disease.

www.nelf.org will yield a list of CELA's.

Getting DPOA is a critical tool.

I would suggest you put a credit freeze on both your credit scores so hubby cannot open a credit card, loan or mortgage.  Easily done online.    Don't tell him about it.

Make sure your homeowners and umbrella liablity insurance is paid and up to date.

A Neuropsychologist (PhD) is a very useful professional who tests function and cognitive skills - very useful when needed, i.e. competency, driving, etc.  

Do what you can to isolate finances from his access - most especially those in your name.  One click of a mouse, and they could be gone forever.  You have to provide for yourself and your child and husband's long term care needs.

star26

In hindsight, I would have taken control of the finances much sooner and put safeguards in place to ensure he could not access funds or valuables without me. I also would have stopped listening to his opinions and judgements about money a lot sooner and trusted only my own decision making regardless of who it pissed off. A PWD can make irreversible bad decisions in mere minutes and those decisions can have a lifelong impact. I also would have trusted my gut sooner and not downplay the problems and risks I was seeing.

Iris L.

You need to learn about anosognosia, even though he doesn't have a dementia diagnois yet.  PWDs (persons with dementia) become unaware of their limitations, due to the pathology of the brain damage.  Many family members are frustrated and angry because they believe their LO is in denial and deliberately making things more difficult.  They wait for the PWD to finally realize what's happening, and to begin to make changes.  This likely won't happen.  The members will give good suggestions.  

Iris L.

JJ401

Echoing the Elder Care lawyer. You don't have to tell your husband you are going. Go alone the first time and find out exactly what you need to do for where you live. (There are differences by state or province.) 

Redo your will and documents. You have a child. You may want to remove your husband as beneficiary on pensions/ life insurance/ etc and replace him with your child. Take a look at the guardian that is named in your will. Your husband is not going to be capable of raising your child if anything happens to you. Is the named guardian still one you want or is there someone better? Your child is young, do you need a trust? Talk to the lawyer about all of this.

A parent with dementia is hard on any child. Add in being a teen and it's much harder. Call your local Alzheimer's group and see if there is a teen support group or ask if they can recommend a counselor. Also ask about a local support group for yourself. Another place to look for counseling may be the school. Some schools have on staff counselors who can check in with students.

My youngest was this age when my first husband was sick (cancer). It was hard balancing my husband's needs and those of a young teen. You have to rely on the village to help you. My child loved sports. He played on local leagues and I could not have done the transportation without parents of team members. Most often people are more than willing to help, if you ask. 

The road ahead is not easy, but being prepared (ask lawyer advice) can take out a few bumps.

jfkoc

I would have brought in outside help earlier.

Regarding the Advantage Plan. We signed up the very first year and selected "F". Never regretted it. We wanted to chose our own Drs.

Cynbar

I would have stopped my DH from driving sooner.

This is a theme I see often on these boards ---- a PWD is still driving, has deficits in other areas of their cognition, but the family hesitates to take away the car.  From these boards, I have learned that anyone with a dementia diagnosis (and Mild Cognitive Impairment is an early dementia diagnosis) is at serious legal and financial jeopardy in the event of an accident. I was one of those relatives saying he didn't drive much, only near home. I did notice he cut down on his driving, and I drove when we were together.Luckily, he never had an accident. But one day he had to drive me home after a medical procedure, and I was shocked. He had great difficulty finding his way (short drive he had done many times), was all over the road, slammed on the brakes and almost caused an accident. I had no idea how bad it had gotten. Yes, it is hard to take away driving, but it has to be done. Recently an elderly man with dementia died after driving to the library, as he often did, and then wandered into a pond instead. Some families wait too long.

Quilting brings calm

Regarding Medicare Advantage, the one available thru my retiree status at my former employment allows us to see any doctor that takes Medicare without a gate keeper.   It allows provides prescription coverage Does this ease concerns about getting an Advantage plan rather than a supplement? We are not eligible for a few years so I have time to look around,

abc123

I'm very sorry your son is angry with you. This journey will be incredibly hard for him. Does he understand what is happening to his Dad? Is there a professional who could talk to him and explain it? I'm so sorry for you both.