Dementia Care When the Caregiver's Sick
Last week I received a crisis text message from a client in Texas informing me that her mother was hospitalized.
Long story short, nine months ago her mom moved in to care for her mother who has dementia in Miami Beach, Florida.
Abuela is an 89-year-old fearless, feisty, independent woman who firmly believes she can take care of herself.
Back in 1984, this twice divorced and retired professional bought a one bedroom condo with a great view of the ocean where she has happily lived alone for the past 28 years.
Abuela was doing fine up until last year when her granddaughter flew in for a weekend visit.
Two days turned into two weeks.
I received an S.O.S phone call toward the end of her unexpected and extended stay. After doing a home assessment and spending time with both of them I made several recommendations that were quickly and successfully put in place... except for the in-home aide.
We got the aides to come, but Abeula sent them away when they came to the door.
Once mom moved in we slowly introduced an aide to help with bathing and grooming.
Introducing an aide is not something that's done quickly, especially when the person with dementia believes that they do not "need" the help.
Lets face it, Abuela might not have needed the help, but her daughter sure did!
A few months and several phone calls and e-mails later, I was called in to do another visit. Abuela's stages of dementia had changed, and so had her caregiver. As a result, mom was now under stress and anxious from the constant demands of Abuela. With no time for herself, and sharing a bedroom, there was no privacy. Additional aides weren't an option because mom couldn't handle Abuela's anger at having "unneeded" people in her home. And Abuela refused to go to a day center.
As I say in my dementia book, "the stress of caregiving without help is detrimental to the caregiver." The types of dementia care needed will change as the stages of dementia progress.
Now fast-forward to the crisis text message. The message I received is was that mom is sick and hospitalized. She had just been newly diagnosed with leukemia, and can no longer be a caregiver.
Now we have two separate crisises. The first is getting immediate help for Abuela, who should not be left alone, and the second is to manage mom's medical condition from afar.
There was no back-up plan in place. The family believed mom, now diagosed with leukemia, would always be the caregiver for Abuela. Are you making any similar assumptions in your situation?
I know first-hand what it's like to be sick while providing dementia care. The flu or any other illness (or broken bones or surgeries) didn't care that I was the caregiver. Traveling through the different stages of dementia, the person I was caring for was oblivious to my needs.
As a caregiver, getting sick isn't something we plan for, and getting better while providing dementia care isn't easy! But, it happens to all of us. At some point while caring for a person with dementia or Alzheimer's disease, you the caregiver will need some tender loving care.
Caregiving is exhausting and stressful to say the least. The constant physical and emotional toll that we caregivers go through on a daily basis wrecks havoc with our sleep cycles and makes us more prone to physical injuries and stress.
In my dementia book I cover this type of situation. You can not care alone!
But for now, here's your Plan B, Plan C, and Plan D:
Plan B is now in place: the family has hired in-home care from an agency that will come in for two hours in the morning and three hours in the afternoon. Abuela isn't happy about this (quite the understatement) and the aide is having a difficult time doing her job, because according to Abuela, "she's not needed or wanted." This is normal.
Plan C is to rent a two-bedroom apartment in Miami and have them both share space and an aide.
Plan D, which is our goal, is to have both of them move to Texas as soon as possible. From there, they can both find an apartment that's near the medical center. Mom will receive her treatment, and they will both share an aide.
These plans may seem simple, but it took hours to come up with a soloution that worked best for this family. After factoring cost-of-care, current and future needs, finances and location, these were the most logical and cost-effective solutions.
As a therapist and certified geriatric care manager who has worked with thousands of families I've learned to expect the unexpected.
There's an old expression that says, "Man makes plans and God laughs."
No matter which of the stages of dementia you're currently in, now is the time to develop your back-up dementia caregiver plan.