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Dealing with Demetia - Pre-Retirement Version
Caregivers: Dementia | Last Active: Mar 15, 2023 | Replies (11)Comment receiving replies
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.
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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.