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Dementia Care When the Caregiver is Sick

  
  
  

iStock 000015547443XSmallLast 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.

Sound familiar?

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.

Sound familiar?

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 crises. 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 diagnosed 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 wreaks 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 cannot 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 solution 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 your loved one is currently in, now is the time to develop your back-up dementia caregiver plan.

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Comments

Thank you for your excellent solutions and comments. 
 
Some family members upon discovering that a loved one has been diagnozed with dementia or alzheimers make "promises" to help with no specific commitment of time and or place or financial responsibility for the long term care...leaving the burden to the one member that steps up... they are too busy or their time already committed to more important tasks. 
 
I found that when my mother was diagnozed with Alzheiners almost two years ago, my sisters and nieces, whom my mother cared for always and unrelentlessly, emotionally and financially, could not make a specific time commitment to spend time with Mami but certainly had lots of opinions and suggestions as to what should be done. They all care for Mami but they are too busy with their own lives, business and family commitments. 
 
Caring for sa loved one with Memory disorders is a thankless job of the heart. 
 
I had previosly cared Papi in my teens until he passed when I was 19, so I felt I should have been ready to care for Mami,I was very grateful to my Mom's amazing support of our family and sensitive to my Mom's need. 
 
You should now that my Mom was quite an accomplished business woman, a leader in a mans world in Peru, at a time when it was rare for women to be educated, independent and financially successful. 
 
She was and is a fantastically independent and proud person,as was my Dad, making her present condition a difficult one, she is not accustomed to being told what to do or taking anything from anyone. 
 
I find that it is difficult for givers to become takers. 
 
Mom retired in the 90's and moved to the States. Since then,I've always shared a large part of my time, work family and community work with Mom, therefor, it was a natural transition for me to become the primary care giver.  
 
The first difficult family decision we faced after  
 
alzheimers was to take Moms car away...she had gotten many tickets and when I followed her several times, I watched her drive too slow and not stop at the signs, even drive in the wrong lane. 
 
Mami recently was involved in bad accident on Biscayne Blvd across form Loehmans, the other driver was ticketed for wreckless driving, when Mami called me from the scene she sounded disoriented, could not tell me exactly where she was except for Biscayne leaving her complex going to my home...it took me a while to find her and when I arrived she was very upset, her brand new white Audi was destroyed, the air bags deployed and she could not really remember how it happened... I believe that my Mom was driving with tunnel vision and could no longer drive defensively to prevent an accident. 
 
Shortely after was diagnozed with AlzheimersHer doctor suggested giving her medications and testing her driving skills. 
 
She started the meds and failed the driving test. 
 
To take her car away to such an independent, strong woman was not an easy task but it was time, her safety as well as others was at stake. 
 
We had a family meeting and my older sister agreed to spend time with Mami Saturday and Sunday and I would Monday-Friday..one of my older married nieces is fabulous and takes Mami as much as she can when she does tha bazzars and shows with her merchadise, my other older niece is an orthodontists with two little kids and has no time, but is very affectionate with Abue at family gatherings...we do family shabbat dinner at differnet home each week. 
 
The story is long, the support is short, what can I say. 
 
Please send me a list of local interactive day programs you recommend. 
 
With appreciation from a commited New Notable 
 
 
 
 
 
 
 
Posted @ Wednesday, March 21, 2012 4:04 AM by Ana
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