Monday, September 24, 2007

The Heartbreak of Alzheimer's: For the AAQI



After my deeply meaningful, but exhausting, month in Alaska helping my 82 year old mom and 90 year old dad with household chores and my mother's increasing challenges with Alzheimer's Disease, I am back home in Salem, OR and have just finished my second 'quiltlet' or Art Fabric postcard for Ami Simm's Priority: Alzheimer's Quilts

Again, I am using the my fabric inches, showcased in How To Make An Inchie, and using two little blocks 'inchies', both showcasing hearts. I created this second little postcard sized quilt which is meant to symbolize the myriad of heart breaking emotions that families go through as they live with, help with, accept or deny the presences of, and then finally, deal with Alzheimer's disease in a loved one.

When a loved one is diagnosed with Alzheimer's disease, the effects on the family can be overwhelming. The reality that someone you love has such a devastating illness can trigger a range of emotions — including fear, sadness, confusion and anger. Conflicts are common as family members struggle to deal with the situation.

What I found in my time at home with my own mother, was while ideally, family should share responsibilities....it becomes obvious, almost immediately..... who the primary care givers will be. Some cannot cope with the every changing aspects of emotional connection or disconnection. Some cannot cope with the physical requirements of dressing, bathing, clean-up or giving of medications or injections. And others simply cannot cope with any of it, and' flight' becomes their instant emotion not 'fight' as behaviorists refer to our 'fight or flight' response to stress.

I have the misfortune of living 1,000 miles away. After my father, who takes full primary care for my mother, I am the logical 'next' caregiver. I am the only daughter, and even with 4 brothers and 3 sister-in-laws, I am the natural intuitive and the natural care giver and I have spent my life time helping others. However, living so far away, even with daily phone calls and bi- or even tri-annual visits, I am a far cry from being able to provide the quality or quantity of daily care that is needed, even at this early to mid-stage of Alzheimer's. That falls on my father, who at 90 years old is an amazing and loving man, but one who is already by facing so very much, as it is.

I did my best to set up their house for increased safety issues and to clean and organize it for an easier state of living for the two of them. I spend countless hours filling our home and them with my love and a positive belief in love and healing. I tried my best to motivate and integrate additional help from other family members.

But most of us work either in, or outside of our own homes, already. Few of us are able or willing to bring aging parents in to live with us. And even if a special few of us are, the reality of that gets checked almost immediately. Many of us still have children at home or in college. We have our own 'stresses', 'stressors' and 'stressees' to cope with.

With health care costs spiraling upwards of $4,500 per month per person in Alaska, nursing homes are a final option, not a beginning one. In home nursing care, goes against most of our own needs and desires for independence and privacy, and sadly enough in this modern world, problems with poor care and even theft by outside care givers.

In-home 'maintenance only care' becomes the first most reliable, more caring option and only affordable option...at least as long as families can cope with the ever increasing demands of care giving. But it is one that is sadly lacking in providing all that is truly needed in our busy lives and this even busier, world.

Working through these conflicts and the emotions they create, allows you to move on to more important things--caring for our loved one and enjoying our time together as much as possible. These emotions, aside from the disease itself, are of themselves, heart breaking. They can tear apart families, as well as primary care givers.

I am deeply grateful for the time I just had with my family in Alaska. I am grateful, now for the daily phone calls and for the moments of clarity...in both my mother, and in myself. I know then that the love is there beneath the heartbreak..... and that love can, indeed, mend the pain of those broken places..... even if it cannot always mend the break, itself.

shown above:
fabric art card or quiltlet which I have titled "The Heartbreak of Alzheimer's". It is meant to symbolize not only the love that is always there, but the heartbreak that cracks that love open. Here, it has not broken the halves apart, they stay connected, just cracked and forever changed by the devastating effects of the disease

Check out my related posts:
How To Make A Fabric Postcard
How To Make An Inchie
Contributions: Ami Simm's "Priority: Alzheimer's Quilts"

5 comments:

  1. Thank you for sharing your thoughts -- so well put-- on such a challenging and sensitive issue. Sending quilty hugs and prayers to surround you with. :)

    ReplyDelete
  2. I appreciate your words on this subject - glad to have you back in Oregon-beautiful art postcard/quiltlet...

    ReplyDelete
  3. Well said.
    We are increasingly an aging population, and at some point we must come up with answers for these problems. What those answers might be, I have no idea. I'm in the same boat with my mother living with cancer, 1500 miles away from me, and the helpless feeling can get to be overwhelming at times.
    (((hugs)))

    ReplyDelete
  4. Hugs to you -- some added strength for someone who is already strong. Watching those we love hurt is hard -- knowing there is little we can do harder. You are doing it well and with grace.

    ReplyDelete
  5. This certainly is a challenging issue. You would like to think that the care could possibly be divided amongst everyone, but I doubt it ever is. This is a lovely postcard. Thank you for sharing it. I had forgotten how you had used inchies on your postcard.

    ReplyDelete

Michele Bilyeu blogs "With Heart and Hands" as she journeys between Douglas, Alaska and Salem, Oregon.