Locating Assisted Living and Caregiver Help

Rosa businessman Bud Black had a problem. Before he knew it, his mother lost her house and most of her money. Bud's mom Audrey had senile dement Santa ia caused by early-stage Alzheimer's, and the early stages of the disease can be difficult to detect. With a thriving beauty shop co-owned by his wife Tanya, a real estate practice and the maintenance of their Victorian apartment house, Audrey's dementia slid by for several years before Bud realized disaster had struck. Although he is close to his mother and sees her often, children can be slow to realize their parents are losing their grip on life. This is the hardest blow of all...those who nurtured us, who taught us how to live and cope with life, now cannot do so themselves.

Bud and Tanya discussed the possibility of having Audrey living with them, of one of them giving up their career to care for her. This proved to be impossible financially; with the myriad interests they have and the way their money is invested in Wisteria Manor, they wouldn't have been able to support themselves and her as well.

When Bud started searching for a new home for Audrey, he encountered many frustrations along the way, beginning his search with the public agencies that are funded to help the elderly.

"I went to every public agency I could find, and each one referred me to more agencies. They were all virtually useless. They only help if you own almost nothing or are poor. There are endless programs for that type of client, and they're certainly necessary in this country. But for the people who have some sort of income, it's a nightmare getting any competent help. You're totally on your own out there, doing something you've probably never encountered before."

The one agency that helped Bud in his search was The Ombudsmen. Every sizable town has one of these; Bud explains the process of obtaining their assistance. "First you pay a $50 donation, then they discuss your parent's individual needs; walker, wheelchair, incontinent, stroke, Alzheimer's, dementia, ability to feed themselves, etc. It was heartwrenching...I began to cry, and found it extremely difficult emotionally.

By the time Bud and his wife Tanya were down to four facilities, it was getting depressing and a little desperate. After all the television programs about elder-home abuses, Bud wasn't willing to leave Audrey to the care of people who lacked compassion or caring. And after seeing those four places...the desperation grew.

"It was unbelievable. People drooling, sitting corners mumbling, minimum conditions. Mostly they were treated like a piece of meat. Little thought was ever given to them as a human being...nowhere did we see any form of loving care. We checked all of them out, and we decided to both work 1/2 time and hire somebody to help out ; to have her with us. We wouldn't leave a dog at most of those places."Bud and Tanya had reached the crossroads of desperation. Would they now have to curtail their careers and hire live-in help, a step which would entail a fresh round of searching? At the lowest point, Bud got a call from one of facilities that had no space, recommending "Shangri-La". Just the name scared him...what fresh hell would this be?

"Reluctantly, we checked it out. It was scary -- we didn't trust this situation because it looked too good! Flora, the owner, was unbelievably sweet, and appeared very loving. The place was clean, and mom could have her own room...this was very rare. Further, she allowed mom to bring her own furniture, to help her adjust. We brought mom to meet Flora, and she invited mom to join in the next meal that day. Mom was delighted, and she ended up staying that night. Several years later I thank God for Flora, her love and sincere kindness and care of my mom. I know why it's called Shangri La."

Bud and Tanya's lives were changed by their search for Audrey's sanctuary. Her care costs $1900 a month, less than most facilities, and far less than Alzheimer's Facilities. But Shangri-La is small, and rarely has openings. They saw a lot that sickened them, and urge baby boomers to take better care of their parents. Our generation is slack in its' care of our elders...this doesn't bode well for us when we need help. Bud's advice...

"Check out the place you've chosen; pop in at odd times once you've placed your parent. Most people place their parents and don't even visit them. This was shocking to me! People can't deal with it, it's so hard for them to watch the demise. Well, it is for me, too, however I have become a much better human being by looking for little things I can do for mom. Little places I can take her. Having lunch with her once a week. Calling her. It broke my heart one Christmas when Flora called an elderly man's son who lived in town and said, "It's Christmas...come and see your dad". How sad that we do not honor our elderly parents in America like in other countries...too many people just drop them off so it doesn't impact their lives. I am proud to say that I am that exception...I have grown from this experience, and know that I will someday be in those shoes myself. Love your parent as they did you."

For many facing the dilemmas and choices that Bud and Tanya toughed out alone, support groups are a lifeline. The American Self-Help Clearinghouse in Denville, New Jersey, helps people around the country find and organize support groups. Edward Madara, the Director of the Clearinghouse, says,

"Doctors, social workers and psychologists can't be all things to all people all the time. When you sit down with others who have shared your experience -- no matter whether it's Alzheimer's caregiving, multiple sclerosis, an unfaithful spouse, or a recent cancer diagnosis -- you fell a sense of closeness and connection no professional relationship can match."The ALZHEIMER List (http:www.biostat.wustl.edu/alzheimer/), available from Washington University at St. Louis, is an email discussion group in which more than 1,000 people participate. If you subscribe, expect a lot of e-mails. The alternative is to subscribe to the list's Alzheimer digest, which sends one message every other day containing all ALZHEIMER postings from the previous two days.

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SIDEBAR: ARE YOU CAREGIVER MATERIAL?

Considering becoming a caregiver to an Alzheimer's sufferer? Consider these facts...(compiled by the staff of the Family Caregiver Alliance)

Women account for 70 - 80% of primary caregivers

The typical caregiver is 50 - 60 years of age

About one-third of caregivers provide care entirely unassisted

About half of caregivers under age 65 work

Caregivers spend an average of about 70 hours a week caregiving.

Caregivers who work typically spend about 40 hours a week

Nonworking caregivers often spend as many as 100 hours a week

Half of caregivers live with the person with Alzheimer's disease

Two-thirds of caregivers have provided care for more than two years

About two-thirds of caregivers say that their loved one cannot bathe, dress, or go to the toilet with assistance. Seven caregivers out of ten are reluctant to leave their loved one alone even for brief periods

Ninety-six percent call caregiving a 'labor of love'

Most care for a parent or spouse. The other 20% care for grandparents, aunts, uncles or friends.

You are shown a book of photographs with different facilities. You point out which facilities would interest you, and you're told whether they take people in your parents' condition. By the time you find a few -- in our case it was 8 out of 40 -- the next step is to call each place. The prices and care differ greatly in each place; there seems to be no correlation between care and price. Paying more does not insure better care!

After a short telephone interview, an in-person interview is scheduled, if the facility is interested. Usually they ask how much she has coming in per month. I made sure not to give this information...Ombudsmen told me to watch out for that. The price is quoted in a sort of range, and only confirmed once you have been interviewed and evaluated by them. Usually they just show you the main room, or living room...the 'show place'. I quickly dug into actual rooms used -- bathrooms, kitchens, etc.

"It is important to ask a lot of questions...they don't volunteer much information unless you dig into the subject. Several of the homes didn't have openings, or didn't want mom. By this time I felt like I had a wrecked car and I'm trying to dump it off on somebody. This is your parent, you love them, and I didn't like what I saw."