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My dad lived to be age 92 and my mom is going strong at 95. I was involved with my father’s care as he struggled with dementia, and I continue to assist my mother, who still lives independently.
Helping an elderly family member? Here are 16 important lessons that I’ve learned.
1. Don’t be blind. My dad started developing dementia five years before his cognitive ability totally fell off a cliff. No one in the family wanted to recognize his deterioration, though my mother—who was his principal caregiver—kept bringing it up. The sad fact is, most people hate to admit there’s a serious health problem because it means they’ll have to deal with it. But it’s almost guaranteed to get worse if you do nothing.
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2. Get the paperwork done. My parents had wills and living wills. A will helps determine who inherits your property. A living will details your health preferences for your doctors and loved ones, should you later be unable to express your wishes. I was already an executor and trustee of some family trusts.
Dementia was making my dad increasingly confused, angry and paranoid. Dad and Mom had a pretty substantial amount of money.
I asked Dad to make out a power of attorney (POA), but I said I didn’t want him to name me. Meanwhile, my mother didn’t have the desire, ability or necessary knowledge to make financial decisions, so she wasn’t an option. Instead, I suggested Dad should grant power of attorney to two of my brothers, who could then act on his behalf if he became incapacitated. This helped to keep him from getting paranoid—because I wasn’t asking for this authority for myself.
3. A power of attorney often isn’t the only piece of paperwork required. Some financial institutions don’t recognize generic powers of attorney, and instead demand additional paperwork. These are generally known as limited or full authorization POAs and have language specific to the account in question. Some need to be notarized.
4. Don’t be a hero. Sometimes, one person will take on the bulk of the work or responsibility of caring for an elderly parent. The rest of the bunch will pat you on the shoulder and thank you for what you do. Just remember that what looks like a temporary situation could stretch into years and even decades.
Everybody involved should have some responsibility from the beginning, taking on some aspect of the family member’s care. Be aware of what you can and can’t do over the long haul. Sometimes, the caregiver will die from the stress of the situation, predeceasing the person being given care. Coming by once a month with a box of chocolates and visiting for an hour is not providing care. Saying “call me if you need help” is not providing care.
5. Earlier is better. If you have the means, it’s better to get a person into a facility that provides assisted living before he or she needs a nursing home. A lot of healthcare institutions save their nursing home slots for the folks who are already in assisted living. The worse your parents’ health, the fewer options you’ll have.
6. Getting into assisted care or a nursing home isn’t a slam dunk. Most of these facilities will want to interview potential residents before they’re allowed into their facility. This is to gauge what level of care the person will need. Most nursing homes will also want to see a net worth statement and list of assets for potential residents to ensure they can afford the cost over the long term.
Fortunately, Mom and Dad had amassed enough savings so they could afford a nursing home. What if they didn’t have the money? After depleting their assets, they could have applied for Medicaid coverage. But that would have involved a whole additional layer of complexity and limited where they could get care.
7. Assisted living and nursing home facilities don’t have to keep residents. One admissions officer told me that people will frequently understate the problems the potential resident has and overstate his or her assets. Result? The institution finds out later that it can’t deal with the resident. Sometimes, after just a couple of months, the institution is told by the family that the resident is out of money.
It isn’t the institution’s problem at that point. It’s your problem and the staff can ask you to take the resident back home with you. One family had a parent who would throw so many fits that he’d been kicked out of six homes in roughly six months. The family would put him in another home and immediately start applying elsewhere, knowing he wouldn’t be there long.
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8. Watch out if one elderly parent is providing care for another. In the process, the caregiver could get injured, and then you might have two parents needing nursing home care at the same time. At that point, you’ll really have problems—and you may not be able to place both in the same facility.
9. Keeping them at home might not be an option. I looked into getting 24/7 care at home for my father. This was 2019, and the price was around $160,000 a year. I asked the agency how good were the caregivers. The administrator hesitated. She admitted that you could get some bad ones. She warned me not to leave any valuables out and that the caregivers may need watching.
Instead, after Dad’s dementia deteriorated drastically, we went with his sons and daughters staying at the house around the clock. That lasted about a month. We initially had nine siblings. One brother died before Dad. Another brother was very ill and died a year after Dad. Both were in their 60s.
The rest of us siblings were in our late 50s to late 60s. Five lived about 60 miles away. Some were still working, all had their own medical problems, all had children, and five had grandchildren.
10. Caregivers should try to make decisions together. I knew we had to put Dad into a nursing home. I called all the siblings together and told them we needed to find a place for Dad. It was agreed. We told Mom of our plans and reasons for it.
11. Someone has to make a decision. Ultimately, the agent under the POA and, if applicable, the surviving spouse have to reach a decision. I asked Dad’s doctor to declare him mentally incompetent. She completed the paperwork. Everybody looked at different facilities, but nobody seemed to agree, plus most facilities were at least an hour from where Mom lived.
So, I made a decision. I talked with Mom and told her that we had one facility that was in our little town. Dad could afford better, but it wasn’t a bad place and it was only 2 miles away. I told Mom that we would take her up to the nursing home every day if she liked, so she could spend time with him. This won her over.
12. Beware of outsiders giving advice to your parents. A family doctor gave my mother false hope. She first told Mom that she knew someone who would move into the house and take care of Dad. This lady supposedly had done it before by herself. Mom got excited. But this turned out to be incorrect. I contacted the person, and she said she had no intention of moving into the house and that she’d never taken care of someone full time like that. She did it with a team of three people.
The other advice the doctor gave: Mom should keep Dad at home and take care of him, no matter what. She gave this advice even though she thought Dad had Lewy body dementia and would be a total vegetable in less than six months. Her advice was ignored, but it made Mom feel guilty.
13. The nursing home stay can be decades—or days. We took Dad to the nursing home for what we said was rehab. We told Dad he could come back home when the doctor said he was well. It didn’t matter much because, by that time, he didn’t know who we were except for brief moments. His mobility was failing and he had lost control of his bowels. Dad had already collapsed mentally before he arrived at the nursing home and he collapsed physically within less than a week.
Two days after he got to the facility, he was in a wheelchair. I got phone calls almost every day from the nursing staff keeping me updated and asking for permission for whatever they needed to do. I also had three face-to-face meetings with the staff. The nursing staff tried everything during that period. The head nurse said she’d never seen anyone deteriorate so quickly. Dad died after 18 days. It was a blessing.
14. Don’t be a hero (part II). Our mother is now 95. By her choice, she lives by herself in her own home, though she does wear a life-alert necklace. I, as the agent under her POA, wanted to move her to an assisted living facility. She didn’t want to go, and the rest of the family didn’t want to force her.
I reluctantly agreed, but with one stipulation: Someone other than me would be responsible for her healthcare. I already had responsibility under the POA, was trustee of two trusts and an executor for a complicated estate. I also had to arrange for home care for Dad and later putting him in a nursing home. I didn’t want to go through that again.
Two sisters agreed to share the responsibility. I warned them that Mom might one day not be able to get up and would need care from that time on. You never know what’s going to happen day by day. I then had a medical POA drawn up for my mother, with my sisters named as her agents. I continued to hold the POA for finances, as well as being executor and trustee.
15. Keep paperwork updated. One of the brothers that was listed on the POA for Mom and Dad died before Dad died. I tried to get another sibling to take over, but to no avail. So, I agreed to act under the POA. Then, after my dad died, a second brother died. He was the other person named in the POA. I added another sibling to the list with me.
16. Plan ahead. Luckily, my mom doesn’t have dementia. She’s an easygoing, independent individual who works hard to maintain her health. My dad was a great and kind man, but dementia is a horrible disease and he had left this earth long before his body died. Mom has a good mind, with seven surviving children, 25 grandchildren and soon-to-be 39 great grandchildren who check in with her regularly. She has a full life and a great will to live. I strongly believe she’ll live past 100.
My sisters have already put her on the waiting list for different nursing homes, just in case she needs it one of these days. What happens when her name reaches the top of the waiting list and she isn’t ready? The nursing home just moves her name back down to the bottom of the list.
This column first appeared on Humble Dollar. It was republished with permission.
Ken Begley has worked for the IRS and as an accountant, a college director of student financial aid and a newspaper columnist, and he also spent 42 years on active and reserve service with the U.S. Navy and Army.
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