Getting Real About Caregiver Stress

My mom and I.

My heart is breaking this afternoon for a fellow Alzheimer's caregiver, for a stranger I overheard in the market today.

She was upset, telling her friend that her blood sugar was way too high, her blood pressure was through the roof, she couldn't sleep, her siblings were arguing with her. And her mother...her MOTHER was horrid, ungrateful, nasty...said the most vile things to her.  Alzheimer's was no excuse to treat her so miserably, to say those awful, hurtful things to her. And she still bathes her mom, feeds her, makes sure she is safe, taken care of.

Just let that sink in for a moment.

This woman, herself a senior citizen, is the perfect example of how much work we have to do - in educating caregivers, in supporting caregivers, in raising awareness about what this journey ACTUALLY entails and how best to cope.

This woman also told her friend that she is one of seven children and not one of them helps with their mother's physical care. It rests solely on her shoulders. Then they pick apart her caregiving, criticize her decisions.

Unfortunately this scenario is COMMON.  Her story is probably the sixth or eighth one like it I've heard in a couple of days. And it's so unbelievably awful that we treat each other this way.  This is so messed up in about a bazillion different ways, it's outrageous.

The thing I wanted to tell her the most, is to not take the abusiveness from her mom so personally. It's a brain wasting disease.  Her mother has no control over her behavior when she's this sick. Understanding that part of it alone can take so much pressure and anger off the situation, bring compassion to caregiving.  Education about the realities of this disease scraps away stigma and anger, making way for compassionate, productive caregiving and better caregiver health.

Then I just wanted to hug her, arrange respite care for her and her mom.

 I wish someone would take her out for a lovely dinner, tell her she's a good daughter even though she  might not feel like one.

Caregiver stress involves much more than the physical tasks of washing, feeding, dressing someone with Alzheimer's dementia.

 It starts before diagnosis when you know something is wrong, just a little bit off and you don't know what it is.  Is it depression? Aging? The family whispering begins.  Who's going to suggest a doctor's appointment? Should someone go with mom or dad? What happens when your parent questions WHY you want them to go to the doctor?

There's the stress of actual diagnosis and what do we do now?

Then sometimes there's the "sibling sprint" to see who can get out of caregiving the fastest by running the fastest/farthest. This includes siblings of the person with Alzheimer's as well as adult children. Yep, it happens; not always, but it does happen. It's also not necessarily a one time event, it can be ongoing and take different forms of denial and avoidance.

Caregivers stress over/worry about their loved ones:

 *Fiances: making sure they have enough, that all the bills get paid and paid properly, taxes,
   insurances, keeping other people out of it for their own benefit, making sure they don't
   overspend or buy inappropriate, unneeded items (that does happen).

*Legal Paperwork: Durable Power of Attorney, Living wills, DNRs, trusts, all kinds
  of banking, names on accounts, proper access.

*Health Care: doctor visits, BEING IN the doctor visits for memory purposes, prescriptions, making    
  sure they TAKE their prescriptions, eye health, dentist visits, ER visits, making sure each doc knows
  about the dementia diagnosis and proceeds appropriately, insurance forms, co-pays, UTIs, HIPPA
  Laws, patient advocate designation/paperwork.

*Housing Upkeep: furnace, hot water heater, roof, flooding, dishwashing, cleaning, gardening
  taking the trash out, gardening, lawn care, snow removal.

*Food: cooking (can they or is using the oven/stove dangerous?) spoiled food being eaten, grocery  
  shopping, food prep, nutrition, knife use, overeating ice cream (yes, that's a thing) drinking enough
  water, how to handle ordering at restaurants (vision/confusion).

*Laundry: is it going from washer to dryer or sitting/molding in the washer because they forgot?
  Are they wearing clean clothes? Are they wearing weather appropriate clothing?

*Hygiene: Toileting, Washing, grooming,  - are they, or has it gone by the wayside?

*Social Life: Are they getting enough social interaction? Too much? Are they happy? Do they
  remember people? To have them attend gatherings or not? Have them at their home or go to
  an event? How many people are too many people at one time for them to see? Do they behave
  appropriately when they leave the house for an outing? Will there be confusion, an outburst?
  Have their friends withdrawn, disappeared? Family too? What to say when they ask about them?
  What to do about the holidays?

Then there's how to handle delusions, accusations, hallucinations, wandering, aggression, toileting accidents, how to handle disease progression and living arrangements as they lose the ability to care for themselves further, how people perceive their caregiving, and does anyone REALLY give a damn about how they are doing.

Through it all is the sadness we feel as we lose our loved one without them actually dying yet. The disappearing of someone who means so much to us, yet they are right in front of you. You can hold them, but...they are gone. It defies all logic and reason. It breaks your heart.

And yet...

We take care of them.  We each have our reasons.

I did it out of love.
Because she took care of me and at my core, I simply could not turn my back on her.
Because I lived closest.
I'm her first born.
I didn't want her to face this alone.
Just because. It's what you do for family.

It can be a fulfilling, rewarding learning experience in which you find your core strength.

It can also be stressful, challenging, unhealthy, exhausting, lonely, debilitating.

Think about this for a minute too: caregivers have their own lives to attend to while caring for a loved one with Alzheimer's; lives that include children, grandchildren, other health issues, menopause, spouses, jobs. It's not easy living two lives at once.

Caregivers need support, understanding, accurate information about Alzheimer's/Dementia, compassion, a break, a listening ear, a shoulder to cry on, a great shrink and the occasional spa visit.

And sometimes just a damn good cry.