Most people, when asked, say they want to “age in place” at home for as long as possible. When an elder is in failing health, staying at home means getting help. For those with the means to do so, it takes a comprehensive effort to care for an aging loved one with the best quality caregivers and healthcare providers. No one tells us in advance what it is actually going to cost.
First Steps
In a real-life example, EB, a successful elder businessman was accustomed to the finest of things. He and his wife had an enjoyable time spending his seven-figure annual income without any concerns about running out of assets. They gave generously to charitable causes and were involved in them. Then EB began to develop Parkinson’s disease and dementia in his early 70s. His caring wife, CW, started to realize that she was going to have to take over managing the money in EB’s place. He had appointed her to do this. She had never had this role and was very uncomfortable with it. As he declined physically, she had to hire someone to help him with daily activities. Hiring a home care worker was the first task. She had some experience with that, based on her own family history. She had promised EB that she would take care of him there, not in an institution. The worker came several times a week and he got along well with EB.
The Progressive Decline
A year passed. EB also developed two other life-threatening health conditions, complicating the picture. The need for more assistance got clearer. Eventually, he needed caregiving 24/7. CW expanded the staff, eventually paying for five rotating workers, so that two of them (all men) would be with EB at all times. In strategizing how to make this most efficient, CW decided to move her husband to their country estate where there was room to house the rotating staff and keep CW attended to on the first floor. That meant maintaining two households, their primary elegant residence and the country home and grounds as well. EB received excellent, highest-quality care every day. The cost of keeping it up reached about $900,000 by the second year of this, above and beyond normal living expenses. CW was shocked when she added it up. She had not realized the expense of feeding all the workers, utilities, laundry, supplies, pay raises, and maintenance with all those people.
The Draw On Assets
The couple’s investment portfolio was doing reasonably well, but not well enough to derive sufficient income to avoid cutting into the principal in their trust. EB surprised everyone when he seemed to thrive with the loving care and attention. Instead of continuing his decline to meet his end, things seemed to level off in his health status and even reverse slightly. Two years into the home-based care of her husband, who was supposedly on his way out of this life, he was astoundingly stable. He could not feed himself, nor walk, toilet, bathe or dress without two helpers, but his appetite was good. He seemed to be aware at times of what was going on, but mostly, he dozed. He could say a few words now and again but otherwise mumbled incomprehensibly. He clearly recognized CW when he saw her. His face lighted up and he smiled.
How Long Could This Continue?
Caregiving continued apace, and the costs continued to rise. CW decided that she could manage EB at home for another year. That would be total of three years of caregiving, with the expense steadily going up while simultaneously diminishing their wealth. After that, if EB still lived on, she would have to place him in a care facility. Even the highest end options for care in a private nursing home with an added private helper would be far less expensive that what she was doing in their own home over those years. She had a massive burden on her shoulders caring for EB. She had to manage the workers, get constant updates on his status, drive back and forth from the country to their primary residence, make every decision about maintenance and repairs on both properties, and track all the legal, financial and medical issues she encountered. She was under constant stress No wonder her own health suffered.
The Conclusions
CW has no regrets about the way she has attended to the husband she loves. She struggles mightily with the uncomfortable financial decisions she must make. The money management is baffling and she relies on attorneys, a financial manager and other assistants to keep it all together as best she can. The funds in their trust came from her husband and she gives him the finest attention possible in spending it for his ultimate comfort.
Takeaways
1. High end care for a loved one in declining health at home is frighteningly expensive in the long run. Be prepared if you face this with an aging loved one.
2. No one can predict long a loved one will need care. Physicians’ estimates are no assurance of longevity nor of the rate of decline.
3. A backup plan is essential in case the situation goes on for more than a year and spending exceeds income. High end care at home may not last for life.
4. Excellent financial management by trustworthy persons will help the responsible spouse or family member get through the difficult time and hard decisions. This must be done on an individual basis, not by any pre-conceived formula.
This is an example of an actual case at AgingParents.com, where we strategize with and support the efforts of family with aging loved ones. We offer this as an example of the real costs of providing what every financially capable person wants: the very best of care. As you can see, the cost of doing this requires significant financial planning.