Dealing with Demetia - Pre-Retirement Version

Good morning, @cmiddlet I sense from your post this is one of those many times when a caregiver feels very overwhelmed. I apologize if I read your post wrong, but I remember those times when all I seemed to have were questions as a caregiver and no answers.

Unfortunately, for many of your questions, the answers include the phrase "it depends". Not every state, insurance company, nor company are the same. My wife was 48 when diagnosed. She was self-employed so issues of coverage, etc. were on me. Just in my case I found my bosses, and hence HR, were not particularly understanding, but that was just my situation. I was fired from my last job after my young boss told me she didn't want anyone working for her that wasn't "100% focused only on work". Getting medical coverage via the ACA was a lifesaver and helped us avoid bankruptcy and having to sell our home for medical care costs.

As far as talking about my wife's condition, she and I decided honesty was the best policy for our children and immediate family. This way our immediate family all knew the same information and I was helped from the feeling of having to sugarcoat things. Again, just in our case, I found most of our long time friends really didn't care and adhered to the mantra of "out of sight, out of mind".

Maybe your husband's company has long-term disability insurance? SSDI didn't work for my wife as there were things she could still do that they felt would allow her to work, so I can't really talk to that support.

On the legal front, there are lots of different considerations for things like a power of attorney. There are ones for legal issues, medical issues, etc. There are also documents for end-of-life directives, etc. Plus real estate ownership is complex. I would suggest consulting an attorney to best understand and get these things in order for exactly how you want them to work. Again, rules can vary by state, etc. I suggest the same consultation, but with a tax expert, on your retirement assets questions. Talk about complex!

Caring for others when you are a caregiver is tough, too. While my wife was on her journey my father was fighting congestive heart failure and my mother-in-law had dementia. No caregiver can do it all. Remember Batman and Wonder Woman weren't caregivers and superheroes only exist in the comics -- not in real life.

I hope my observations have been of some help. Please feel free to ask any additional questions and I hope others will chime in with their ideas and thoughts.

Strength, Courage, & Peace

My husband was able to get a largerSocial Security Disability at the age of 63 and it was the full amount he would have gotten if he had retired at the age of 66 and 2 months. This was much more than he would have gotten if he had taken the amount that Soc Sec gives at age 63. I think it just depends on if you get the right person on the phone or at the SS office. I would keep trying. Also, our doctors' paperwork all showed the diagnosis of LBD - and I asked them to put that in the paperwork. One doctor on his own added the words - Unable to perform his job. I later found out these words are VERY IMPORTANT!
Don't give up! It will work out. God bless you!

Hi Scott- I have found that one of my relatives loves supplements and sending suggestions, articles, etc. I finally had to put my foot down after she made a promise that she would not continue but did. "outsiders" don't really understand this loss of a person, especially at the beginning. There is so much to take care of, and it seems it's all at once, right, cmiddlet ?

In my situation, while we wait for his neurological assessment I watch youtube videos by Teepa Snow. She is God's gift to those with Dementia. She helps pave the way to learning to talk and respond to someone with dementia.

Merry

Well, speaking with a person who went through this is living daily with this awful and unseen disease (no one who looks at you believe you have this disease if they didn’t see you regularly). First work with your doctors (yes dementia specialist) first, come up with a plan how to approach your HR, bring a letter from your doctor explaining why you need to retire. Once you meet with HR tell them you are doing this to keep your mental health stable to start making major changes in your life while you legally still can. Depending on your HR (I was a director and an equal to our HR director and she was a highly trained HR person and knew they had no choice other than to work with me) and follow your doctor’s plan. This plan will change as the disease progresses and you will be dealing with doctors the rest of your life (some doctors wouldn’t understand or don’t care and some doctors that are excellent and a expert in this field). Next get the power of attorney done by a firm that specializes in aging and long term health. Then work with social security, have all your doctors in-line and agree this is your best plan to treat your medical condition. This could take a year (you do get the back pay ( to your filing date) so that does help. Get someone who you can talk to and trust as it is very difficult it could be someone other than your spouse I have my daughter who helps the most.

Oh get use to people saying “ you don’t look sick”. This is very difficult to hear as the pain is inside so people can’t see it!

If only people who say that could spend a full 36-hour day with our loved one, right? I totally understand that - it is really frustrating.

Well I met with a financial advisor. If you are under 55 and withdraw from your 401k to pay for dementia related caregiving or care, you get an extra special 10% penalty plus the income tax on anything you withdraw. No one cares if you need it to pay for a driver or home caregiver or occupational therapy. Until you turn 55, then there is a little bitty bit of relief. Then at 62, it's much easier, if your loved one can make it that long.

Somehow it's not surprising. It's like the insurance not covering prosthetic arms or hearing aids - those who make these stupid rules at the top of the pyramid aren't making record profits since the things that affect more people make more money (cue the cute ads on TV for erectile dysfunction, psoriasis, botox, fillers, and the OTC hearing aids for people with "mild" hearing loss) - the law of economic supply and demand.

I guess me and the kids will just do the best we can with the situation. I guess it could be worse. But I really don't want to imagine what "worse" will be.

I have one of these relatives, too. Supplements and "your waking mindset" supposed to make everything all better. Even a religious dig that we aren't "praying correctly" or "it is meant to be this way for you guys" - it's exhausting. I am a chemist - ain't nothing going to "cure" my 51 year old husband's LBD. Taking the fam to Lourdes to dip in the fountain - yea, great show of faith, but come on.

At this point, it'd be great to focus on whether my kids have issues on chromosome 4 and make sure they can make the best of their lives.

So what should I do? Give the IRS all the penalty money to care for my 51 year old husband in his last days or to get genetic counseling for my kids to see if its worth the risk passing the early dementia gene on to their kids?

I'm not sure that people really believe everything that they read about all the junk (but some very good stuff too) or if they are at their wit's end not knowing where to turn. My sister knows how I feel about a lot of it but our mother loved the idea of modern science and all new medications that "instantly" cure things. I have recently asked her not to recommend anything like this. If she sees an article for me to read that is outstanding that's one thing but other than that please don't bring it up. Can you say this to your relative?

I told Linn that it just interferes with what his doctor recommends and confuses things in my mind because we have already set up a medication protocol. I feel that it is extremely important to set limits on people, no matter what their intentions are. Like you, my husband is my responsibility and I don't need anyone to insert their opinions. It's not their business. If it is a problem you might consider limiting contact.

My home that I have created with Dave is our sanctuary and I will do everything and anything to protect it including keeping people who create an unhealthy environment or goes against my wishes to do it more than once. It would be like someone smoking in my home. If a peaceful environment is necessary for my husband's well being and I do everything that I can to make sure that it is that way, than damn if anyone else is going to disrupt it, or make me tense and upset.

I think that it's necessary, and you have had more experience than I have had with this, to think of it as a family disease. We share it all, poop, pee, and whatever.

Thanks for such an easy question. lol. WOW. In your heart, I think that you have the answer. If you can continue to care for your husband the way you have been then helping your kids out would be what I would do.

I feel and so understand your frustration- everything we spouses anticipated our futures would be fades away quickly when dementia enters the picture. Suddenly, there is much to be done-
First- make sure you have wills, powers of attorney, and advanced directives in place. Check that the deed to the house (or rental lease) has both names, same with car registrations and titles. All needs to be done while he is competent to sign. Think about who to ask/name for guardian to the kids if something happens to you. The lawyer can explain how each piece works.
Next- think about the family financial situation- is there any consumer debt, credit card debt, auto loans or leases, high rate mortgage? I highly recommend Dave Ramsey’s book (can get on Amazon or any bookstore) to get organized and started on a “debt snowball” and/or pile up that emergency fund.
As you don’t know how long your husband will be able to work, how long Social Security will take to approve the claim (or disapprove or ask for more info), it really is best to attack debt now.
As far as dementia-related care costs- it will be hopefully be awhile that he can work, then be safe at home on his own while you work, then when he’s not safe on his own- you can look into day programs (alot of assistive livings do this, sometimes local senior centers will welcome people for the day. Later, when it looks like he will soon need a facility for a higher level of care, talk to an Elder Law Attorney who will advise you about preparing for an application to Medicaid, every state has their own rules, and laws that guard against “spousal impoverishment”. The idea is to apply before actively spending savings or retirement account money- the application is done and they tell you pretty quickly what your share is and what you need to “spend down” for his share before Medicaid will kick in. The Elder Law attorney will have a certified Medicaid Planner on staff that will help you arrange finances, as needed.
I find some comfort in that saying, “Why me?” ….”Why not me?”. You do your best and keep putting one foot in front of the other.