The Alzheimer’s Storm II: Caregiver Stress

An inconvenience is an adventure wrongly considered.    ~  G. K. Chesterton

Mom folding laundry with one of her caregivers, and her housemates at the table in the background. There are 5 rotating caregivers for 9 people.

Parenting is one of the hardest jobs there is, and I’m pretty sure the fierce animal love we have for our children is what makes it possible to parent day after day without drowning ourselves in the bath water.

So it’s sort of a surprise to discover the feelings are pretty much the same when caring for an aging parent.  We’d do anything for them, many people do — and they pay for it with high stress, poor health, loss of income, and blinding exhaustion.

The Alzheimer’s Association says there are more than 15 million Americans providing unpaid care for persons with Alzheimer’s and other dementias.  That’s about the population of Virginia and Washington combined, which is a lot of bath water.

I’m a long distance caregiver for my mom.   While this brings it’s own set of challenges and a fair amount of guilt,  I am not in the trenches like so many are, and so I really have no right to talk about caregiver stress.  I get it.  But if my mom lived with me, here’s what I would do to try and avoid excess stress.  You can call this a “dream case scenario.”

  1. Join my mom in Alzheimer’s World
  2. Have a schedule
  3. Do what she loves
  4. Laugh & Find the funny
  5. Pick my battles
  6. Give positive energy
  7. Move her body
  8. Encourage & Compliment
  9. Get outside
  10. Give her “jobs”
  11. Take her to adult day care

For me personally?  I would try to:

  1. Eat healthy
  2. Exercise
  3. “Sleep when the baby sleeps”
  4. Pray, Meditate, Pray
  5. Ask for help
  6. Accept help
  7. Laugh
  8. Hug
  9. Love
  10. Scream when I’m alone in the car

Sometimes I imagine that my mother is living with me as I go about my day.  What would she be doing while I make dinner, take a shower, or right now — while I’m on the computer?  Having mom here would probably be like having a two-year-old again — she would be at my side, doing whatever I’m doing, but instead of asking curious sweet questions and me being an eager teacher, mom would be saying the same things over and over and over again and I would be counting my breaths.  I mean no disrespect

There is so much time in between those pie in the sky items listed above.   So.   Much.   Time.

Everything would shift.  Mom would move to the top.  Things wouldn’t get done.  Movies wouldn’t be watched.  Legs wouldn’t get shaved.  Vacations wouldn’t be had.  Stress would be hard to avoid.

I’m positive it would be the hardest thing I could ever do.  But I’d like to believe I’d be grateful for the time with my mom with an understanding that it won’t last forever.

I’d like to find out if I’m right.

Are YOU a caregiver?  What are thoughts on this?

 

Find “In The Alzheimer’s Storm” Part I HERE, and look for “The Alzheimer’s Storm:  Family Conflict” in a later post.

~  Joanne

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Comments

  1. Jeanne says:

    Hey girl,
    I love reading your blog. It warms my heart but at the same time breaks my heart. I cant imagine how your dad lived prior to the decision to ask for help. I cant imagine what it is like to be in your shoes. I live it as her niece, we all saw it with Grandma, it was heart wrenching then as it is now. I keep you in my thoughts, my prayers, and my laughter. We will get together soon, I promise! Love you Cuz!!!

    • Joanne Leonardis says:

      Hi Jeanne, So nice to hear from you! Thank you for reaching out and for keeping me in your laughter . . . I like that. Yes, would love to see you soon. Love you too.

  2. Joan Tallman says:

    I just came from my mother’s health care facility. She is in the alzheimer’s wing as of August 2012. She told me to go home as I was upsetting her. She keeps asking to go home. My mother never got upset or complained before. My sister and I lived with her 24/7 for two years. Three days on, Three days off. After 2 years it was wearing both of us down living actually 2 lives. Our husbands were tolerating the living arrangements, but it was hard on all of us. A private room opened up at the facility so we moved her there. She is not a happy camper. Still remembers her home, somewhat. ” Why can’t my children stay with me?” Now the guilt starts…I really appreciate what you are going through. This is a terrible disease. I left my mother today sad but also somewhat angry. I don’t even know what I’m angry at. She certainly can’t help the way she is and I know this. Caregivers are very special people and I so appreciate their patience and kindness. Take care and keep in touch. Its nice to read your stories and thoughts. Joan

    • Joanne Leonardis says:

      Hi Joan, I’m so glad to hear from you. You know, it’s interesting that you said you were somewhat angry, and you don’t even know what you’re angry at. I get that. It’s so easy to feel that way, and it’s probably pretty common. Intellectually we know it’s not their fault, but still so easy to get frustrated, impatient, sad, and angry. You’re fortunate to be near your mom and that you and your sister were able to live with her for awhile. About how long has your mom had the disease — I realize that’s a tricky question, but when did she start showing signs? My mom started showing signs around 2005, so it’s been about 8 years, and she was moved into a home last year. Stay strong Joan, and stay healthy for the people behind you. Stay in touch. : )

  3. Heidi says:

    I helped find a home for my California grandmother a couple of years ago. It was just 2 weeks but the nearly daily visits alone were challenging. I was her companion when she was transferred from her longstanding home in LA to San Diego where she entered a long-term care facility. She was weak so they kept her in the wheelchair during transport. I sat in the seat in front of her. I spent 4 1/2 hrs, body twisted so I could somewhat face her, and spent the entire time conversing with her and reassuring her. There was a major cramp in my neck but I managed to keep her calm despite taking her where she “absolutely never wanted to end up”…San Diego wasn’t home for her but it was close to her daughter (my aunt)…her only family in Cali. It was such a relief to find a home that would accept her…a place that wasn’t a cold lockdown ward, a place that didn’t smell stale, old, or sick…AND then most importantly, a place that had experienced truly-caring caregivers…caregivers who encouraged her out of her room and weren’t set on keeping her heavily medicated. I personally cant imagine taking on that responsibility and was so thankful that we found a place where she was treated with dignity despite her declining mind. What a tough job they have.

    • Joanne Leonardis says:

      What a beautiful testament to the importance of the caregiver — including YOU, even for just a short time. You also highlighted how important it is to find the right place for your loved one. Many people cannot care for their family member and we need to remind ourselves, me included, that is OKAY. I think a facility or home that puts it’s residents first by treating them with care, dignity, and respect is quite often the best place to be. Thank you Heidi. : )

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