Never underestimate the power, one person can have while caring for an elderly person at home. Daughter, husband, wife, son…no matter which role, one person can make it possible to keep an elderly relative or friend in his or her own home. That one person has to become a team leader, a parade marshal – a general factotum. You will definitely need help – no one can or should do this job alone – but you alone can truly handle all that comes with caring for an elderly parent at home if you create a new role for yourself as the person who runs your elderly parent’s household.
Be very clear – your job description may not involve a lot of physical care giving. Ideally you will have professional caregivers, trained at the appropriate level – and found either through CCAC or through private person care agencies.
The gift of keeping your parent’s final years at home comes directly from you and your ability to both find help and to problem solve. Some days it will seem like a new problem arises daily. For example, I was forced to spend several hours last Sunday investigating the merit of various incontinence “briefs”, as adult diapers are called, because the “ultra absorbent” one I originally bought for Mom’s night time use didn’t do the job and Mom wet the bed a few times, poor thing. The local drug store didn’t have the product I needed; all it sold were the less absorbent briefs. Instead, I had to go to a store that only sold medical aids in order to find the ultra-absorbent briefs Mom needed. And here’s the point: without caregivers at home with Mom, I couldn’t have spent the necessary time doing this crucial research.
I organized Mom’s home in a way that allowed me to act as the leader of the household. She had caregivers – at the companion level – from 9 am until her bedtime at 9 pm and later round the clock. Mom needed constant supervision because her dementia caused her significant confusion. My job was to visit Mom’s home – in my case, a condo on the next level from my own – several times a day to provide social visits and to keep an eye on things. The caregivers reported to me (a good thing because Mom’s standard comeback when she was refused more wine was to “fire” the caregiver).
I personally made all of Mom’s appointments. Mom appointed me as her Power of Attorney for both Property and Personal Care so that I could take over her banking, bill paying and health care. I prepared a budget for Mom and I ensured her bank balance was healthy enough to cover her expenses. I supervised Mom’s meals, ensuring they were tasty and portion appropriate. I set the hours of Mom’s housekeeping Angel. And when problems arose, as they did on an almost daily basis, I worked with the caregivers to find solutions.
Often the problem was Mom’s behaviour. Her dementia had given rise to a “visitor” I called Mom’s “evil twin”. When this evil twin took Mom over, she was angry, vindictive, downright mean and spiteful. Putting Mom onto a low but regular dose of Risperdone, an anti-psychotic medication – helped curtail the “evil twin”. Still, it made an appearance weekly, usually when the caregivers informed Mom that she had reached the limit of her wine intake. Limiting Mom’s alcohol intake was essential, because without the limit, Mom would drink herself into a stupor several times a week. Sometimes, the evil twin arrived without any obvious provocation. Mom would demand that the caregiver “edit her book” or “do her account books” or perform other fictitious tasks. Worse, Mom would demand that the caregiver clean the condo, a job that was definitely not in the caregiver’s job description, any more than editing an imaginary book was. When the caregivers refused, Mom hit the roof. She expected absolute compliance and assumed she had absolute authority over her staff. The caregivers knew that I was the one who had hired them, just as they understood what their job entailed, so when Mom made her unreasonable demands, they simply walked away from her. I suggested they go sit in the den for a while in the hopes that the evil twin would depart as Mom sat quietly.
Other behaviours that have required my problem solving skills included Mom’s resistance to showering. This is a very common symptom of dementia. Mom would pretend to shower. She would turn the shower on, wait a bit, then turn it off without ever applying soap and water to her body. What gave her away was her dry towel, which hung as usual on the towel rack (when she actually showered, Mom left her towel on the bench for someone else to hang up) I talked to Mom about this pretence, and she informed me that she could no longer hold the hand-held shower nozzle in her badly arthritic hands. I called in the plumber to install a fixed shower head. Problem solved? Nope. Mom became fairly regular about showering, but for a long time refused to wash her hair. I became the chief Nag about her hair washing. Finally, I opted out of my nagging role and I hired a professional in-home hair stylist to wash and set Mom’s hair once a week. I wish I had thought of this sooner!
It seemed that problems like these arose weekly – sometimes even daily. I installed a plastic mattress cover to protect Mom’s mattress when she wets the bed. I ensured Mom’s meat was cut into small pieces to protect her from choking. Choking was an ever present hazard because Mom’s throat was so narrow. Once, when Mom bit off a big piece of toast, her caregiver had to perform 15 Heimlich manoeuvre before the toast was dislodged. Mom’s legs showed large blood clots, the result of a blocked artery further up her leg. I asked the caregivers to begin to massage both lower legs every night and the clotting problem improved.
I could go on and on, listing the problems I faced. If nothing more, these problems revealed how important it was to have someone in the role of “supervisor” or “team leader” while caring for an elderly parent at home. It was not my job to provide the hands on care Mom needed daily. Those tasks fell to Mom’s caregivers.
Someone has to run the household. Someone has to be in charge. And let me tell you: that someone is NOT the elderly parent. Giving this authority to the parent won’t work. Unbeknownst to her, Mom was actually declared incompetent to run her affairs last November. How could she run her household when she sometimes didn’t even know which house she was in? No, the authority had to rest with an outsider, someone able to look at the whole cloth, rather than having a narrow focus. And this is the “Power of One” I am talking about.
In a nutshell, a family member can certainly care for an elderly parent at home. S/he will need help, and a great deal of it. But it’s essential to have just one person in charge. This person had to problem solve, and to carry the necessary authority to oversee a team of caregivers. Ideally, this person should also have a Power of Attorney in order to oversee the parent’s financial affairs. In turn, the family member in charge would have to drive the parent to various appointments. In my case, I took Mom on social outings, or to her manicures and pedicures and to medical appointments. Moreover, I made those appointments myself now. I oversaw the grocery shopping, meal preparation, the clothes Mom wears, and even the flowers Mom had planted every Spring. We had a wonderful housekeeping- Angel who needed no supervision as she performed all the housekeeping tasks. But I made sure this Angel was paid regularly, that the caregivers were paid, and that Mom’s credit card was paid off monthly… The list went on. I recently organized all Mom’s receipts so her accountant could prepare her tax return. I did all Mom’s filing too. And yes, I edited Mom’s books, but that was in another life, even though Mom sometimes thought she still needed an editor!
As the Team Leader, you will need to remember to take care of yourself along the way. In my case, it was difficult to take a day off, because Mom lived just one floor above me in our condo building. I visited her several times a day, and then noticed that a month or so had gone by without my taking any time off. Caregivers: go for coffee with a friend – the caregiver would be there to supervise your parent. Go to church. Join an interest group. Take a vacation. In short, have a life for yourself outside your caregiving. And for heaven’s sake take regular days off! You are no good to your parent if you are a burned out shell of your former self.
The most priceless gift I could give to my mother was the gift of myself. My visits were the highlight of her day. Mom refused most other social intercourse, making my visits doubly important. Mom couldn’t follow a conversation on the telephone very well any more, something her regular callers failed to understand. Her arthritic hands had trouble holding a pen, so mail correspondence was out (although I occasionally dictated a letter for Mom. I bought her an iPad so she could follow her email, but she has yet to do this by herself). Outside of the monthly visits by her other daughters, I was it.
This is the Power of One. Take heart in this power. Exercise it wisely, without becoming overbearing or tyrannical. But know that you CAN take care of your elderly parent at home. You are NOT alone. You will have good days and bad days as you run your elderly parent’s household. Know – and know this deeply – that you are giving a priceless gift to your parent by fulfilling his or her wish to remain at home. You are the Power of One.