Thanks Myrtle for the link. Of course we all here know that dementia caregiving is expensive, but I like they way the article compares it to the other 2 diseases where constant supervision s rarely required until the end and that Medicare pays for most of the costs associated with those illnesses because they are medical costs. Of course I forwarded it to others not living this life and who have no clue.
Thanks for sharing, Myrtle. I agree with LFL regarding the comparison to costs for heart disease and cancer. No one has a clue how expensive this disease is and how it defeats us all, both emotionally and financially.
Elaine, I'm glad you mentioned the emotional burden because I think that the financial insecurity created by dementia increases our emotional burden - at least that is true for me. Even though I was used to making financial decisions (both as a single person and as a wife), the monetary commitments involved were always on a smaller scale (with the purchase of a house and a mortgage loan being the largest). No matter what phase of life I was in, I had always adjusted my expenditures to my earnings. Dementia changed all that - it impaired my ability to make a living and caused me to commit to regular expenditures that we could not afford. (I'm glad my husband never knew about this - he was always very frugal.) The financial vulnerability we are living with is one more part of the stress.
Exactly, Myrtle. We always "lived within our means" meaning adjusting expenditures so we could afford them. I always called it belt tightening. We were fortunate that we were able to do that without becoming destitute. But as much as we planned for our retirement expenses, including illness, there was no way to know or understand what financial devastation was coming our way with a dementia diagnosis.
I had to quit work, pay psychiatric hospital bills that insurance chose not to cover because he "didn't need acute care" (even though he tried to kill me and harm others in the psych hospital).. so like you, it impaired my ability to make a living and shoulder expenses that we can barely afford and not for long. For me, the financial vulnerability both currently and after his death (assuming I survive him) is equally or more stressful than the caregiving. What happens to me after all the money is gone and he is dead? I get to live in subsidized housing with little or no assets and have no way of maintaining the style of living I worked and sacrificed for so many years to have inspite of my own disability If I sound angry, I am. I was one of the many working disabled who chose to thrive, contribute to society and be independent for 40 years. It was my husband's illness that cut my career short at 58; I would still be working today.
Water under the bridge...but each of our stories reveal the true cost of this disease. The article just skims the surface.
Reading that article made me a bit anxious. I still work and DH has disability and long term care insurance but I don't know if it will be enough. I have a daughter in college, a son who is a junior in high school (college still 2 yrs away), another daughter who just got engaged on Friday and the oldest gave birth to twins in August. I try not to stress about money, but I've got a caregiver in my home while I work to the tune of $2000/month and just not sure what is going to happen. I'm only 53 but the thought of working until I'm 70 because I don't have enough money makes me want to go insane. I'm using a financial planner, we have the will, POA, Advance Directive and everything I think I'm supposed to have but, like LFL, I want to have the standard of living I've worked and sacrificed along the way to achieve. The load feels awfully heavy tonight. My jaws are killing me right now because I have been clenching my teeth a lot lately due to stress. We're all in the same unpredictable, expensive boat.
The LTC insurance should help a lot on top of his disability. But I understand the concern and worry.
The first thing you need to do is to see an eldercare attorney and work on finances. You have 2 kids to worry about college and the Medicaid 5 year loopback does not consider paying for education of children to be an acceptable expense. I assume your son is collecting SSDI if your husband has SSDI. I saved my son's SSDI all for college, that has helped a lot.
As to older children, I think they need to know that due to future financial struggles (and I guess current ones too) that they cannot expect financial help for you. I would be concerned that a wedding would not be looked upon kindly by Medicaid in the 5 year loopback. On the other hand if you have LTC insurance you are probably over 5 years away from even having to think about Medicaid.
You need a plan and you need a professional to help you with it. When I saw my attorney I was told I was fortunately that I have a big mortgage because that will help me preserve my finances if my wife goes on Medicaid in 4 years.