A Book from Ruth
OH HOW WE WOULD HAVE LOVED BETTY’S!
Although our family’s nearly 9 year Alzheimer’s journey ended in November of 2006, I still struggle with what I could have done differently. What if we had kept her at home? Wouldn’t that have given her more familiar and comfortable surroundings?
What if I had quit my job and cared for her full time? Would I have been able to stimulate her mind with daily therapy which would have enabled her to stay healthier longer? What if I had found a more loving and suiting facility for her to live in? What if there had been a place like Betty’s?
These are the questions that every family having to experience Alzheimer’s of a loved one is faced with during and after their journey. The answers are pretty much the same.
What if I had kept her at home in more familiar and comfortable surroundings? Well, her home and familiar surroundings were not in Indiana, but in Florida. Short of giving up our jobs, our home and uprooting our then college student and teenage son, that wasn’t going to happen.
What if I had stayed home and cared for her full time? That college student and teenage boy, their lives would have been greatly affected something Grandma Marion wouldn’t have stood for. Even if I had cared for her full time, would I have been able to care for her the way she needed. Probably not.
Could I have found a more loving and suitable facility? No, because it didn’t exist.
So you settle. You settle for what you think is the best you can provide with the means you have. You spend years visiting as much as you can while still squeezing in a bit of your own life and your family’s life.
For a while, you’re able to bring them home for holiday dinners, only to find that they are frustrated and frightened because they no longer recognize their grandchildren, yet they cry on the way back to somewhere you know they’re not really happy in. After a while, family holiday gatherings take place for a few hours in their own room.
You hunt for their clothes even though you take them home and launder them yourself. You hunt for those precious family photos that you’ve so lovingly prepared to make their space familiar. You complain about the quality of the food that you cannot even bear
to taste. You argue with agency nursing assistants when they continually ask patients, “Don’t you remember what I already told you?”
You cringe when you walk into the activity room where no activities are taking place and the attendant is asleep. You leave with great sadness because again, someone ‘on duty’ didn’t know who you were talking about when you inquired as to their whereabouts.
You drive home thinking:
Why can’t they spend more time stimulating their minds or making them laugh (not just during Tuesday afternoon Bingo)?
Why can’t someone over there learn how to cook?
Is it more expensive to cook tasty food?
Why can’t her possessions stay in her room?
Why do they continually tell them, “I already told you?”
Why is she always sitting alone when I arrive?
The answer is simple. They just don’t get it. They are a nursing home. Their training is just that: Nursing care. They take their vital signs, give them a bath twice a week, bring them their medications, change the sheets, etc. They’ve designated a locked wing on the second floor for the ‘dementia’ patients. They’ve convinced a reluctant RN to take charge of that wing. She schedules the staff, she juggles the budget, she lasts an average of 8 months running ‘that unit.’
You keep dreaming of a better life for them. You make suggestions to the administration. They assure you that they are making changes in the “dementia wing.”
Then one day, that call comes. You rush out there, only to be told they have to be moved out of what has been their home for 7 years because the oxygen they will need to keep them comfortable is a danger to the other residences in the wing.
You reluctantly agree and move her and you wait and you relive the last 9 years in a matter of 14 hours, wondering why all your efforts to make their life better, never worked. You tell them how much you love them and you hold them while they leave you.
Until you have lived this disease, until you have watched a dynamic individual lose the memory of their entire life before their eyes and yours, you can’t fully understand the devastation.
What we need to understand is that WE CAN DO BETTER!
WE NEED BETTY’S!
We can begin to embrace and empower families who’s loved one has been given a diagnosis of Alzheimer’s.
We can help them manage their care at home if they choose.
We can transform how these beautiful individuals are cared for.
We can establish a home that is specifically for these individuals suffering from this horrific disease that ultimately robs them of their memory.
We can bring them joy and laughter and care for them with love and compassion.
—Donna, Loving Daughter-in-Law of Marion, 2008. Reprinted with permission.
Note from Betty’s Love: If you are a daughter- or son-in-law Caring-with-Love for a parent-in-law, please make time to read the Old Testament’s Book of Ruth. What you are doing has nothing to do with ‘law’ and everything to do with Love … and YOU do it perfectly! Amen.
Please share your story! Please submit 500-1,000 Words (or whatever it takes to tell it!) and a photograph of you and your Blessed Warrior, and send Your Story – and a brief permission statement – to families@bettyslove.org. Thank you! Then, please join us for Betty’s University programs we can tailor to your Family.
And thank you for supporting Betty’s Vision of JOY. With your support, our grassroots movement will keep changing brains, lives, and the world … one family like yours at a time.