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An anonymous sister writes:

Both my parents are in their mid eighties. Both are showing signs of fuzzy thinking. Mom was severely abused as a child and young woman. No counseling or any other help. Her husband (of more than 40 years) had a tough time growing up, too. I have two brothers, no sisters and am the only one living close to them. I'm having a really tough time wondering if I'll know when to insist them make other living arrangements.

I would like them to live with me (and my husband); my husband isn't so sure. I'm at their home almost every day, doing what I can. They are becoming more childish and helpless all the time. Sometimes I return home wondering if I'm sane.

I read somewhere that responsibility is the dark side of love. It seems that is so. Any advice?

Jeannie says:

The challenge of caring for aging parents is relatively new. In the 20th century alone, we have added more than 25 years to life expectancy. According to Mercedes Bern-Klug from the Center on Aging at University of Kansas, a child born in 1900 would survive 49.2 years. In 1992, average was 75.8 for males and 79.8 for females. The projection for 2050 as set forth by Administration of Aging (AoA) will be 86 for males and 92 for females. It is painfully obvious that this challenge will, at some point, have to be addressed by aged parents and caring children.

Most of us shudder at the thought of turning the care of Mom and Dad over to someone else. The horror stories of insufficient and poorly trained staff working in less than hygienic facilities are enough to turn the strongest of stomachs. These do exist, no doubt about it. However, in my research, I found them to be the obscure exception and definitely not the rule. It also follows that as awareness is raised, these exceptions will be eliminated or upgraded to meet more stringent standards.

Judging from your description, it appears that your parents are moving toward geriatric dementia or Alzheimer's. You have expressed some real frustration. Having dealt with a similar situation let me tell you, it doesn't get any easier. Incontinence, disorientation, and childish or even aggressive behavior become the norm.

My observation is that your husband's feeling may be correct.

There are several options you may want to prayerfully consider. One of the most desirable is, of course, an assisted living center. For a couple, the cost would range somewhere between $2,500–4,000 (and up) a month. There are many variations on this theme. Some offer custodial care that will increase to meet your parents' needs. Many have live-in medical staff and round-the-clock care. They also have a variety of programs to facilitate patient socialization.

Other, more viable choices, depending on your parents' financial assets could include:

Nursing Home – after financial and medical assessment by a Medicaid representative, one or both could be eligible for 24-hour care. Should just one parent require admittance, assets such as house or car would be protected from seizure by the 1989 Spousal Impoverishment Act. No chance of Mom or Dad becoming homeless because of inability to pay.

Aged Waiver was new to me. The Medicaid representative explained that through medical and financial assessment, in-home custodial care could become an option. As I understand it, this is the preferred choice for those not needing (mentally or physically) full custodial care. It seems very humane, in that a person would be able to stay in familiar surroundings and not be forced to fully surrender his or her independence.

As you weigh your options, you may want to speak to a Medicaid representative in your area. Look under Human Services in the phone book. They have a free guidance policy (lawyers cost upwards of $100 an hour) and will help you tailor a program to fit your situation. With this information, you can make an educated and compassionate decision regarding your parents.

Caring for the aged is one of the most difficult things there is. Your devotion to their continued well-being is so impressive. I am however, also concerned about your well-being and that of your husband. I'm sure you will care for them until the demands become so great that a decision has to be made. One sister used this rule of thumb: When they start to endanger themselves or others (leaving the stove burner on, forgetting to turn the water off, wandering in the neighborhood, etc.), it is time to take action. At that time, I hope you can prayerfully find a suitable solution, acknowledging that you have done everything possible to honor them in this life.

Let us know what you decide.

Alison says:

During our ten-year tenure in South Florida, my mother's health went from pretty darn good for a 66-year-old who had endured numerous health problems, to pretty darn devastating for a 76-year-old who had endured numerous additional health problems. Over the years she has suffered from a series of transient ischemic attacks (TIAs), sometimes called “mini-strokes.” These occur when the blood supply to the brain is briefly interrupted. In my mother's case these have resulted in multi-infarct dementia.

My mother is still living at home with my father who cares for her. Now that I am finally living closer to my parents again, I can see, on a day-to-day basis, the difficulty involved. Physically, of course, there are multiple issues, but the emotional issues are every bit as charged.

About seven years ago, it seems, I called my mother to relay some news. Within a few days, the same issue came up again and she asked why I hadn't told her. “I did, Mom.” But she could not recall hearing anything about it. This same kind of thing continued to happen upon occasion and my mother would say with a laugh, “Oh, I'm getting dotty in my old age!”

Eventually the forgetfulness became enough of a concern that her doctor ran some tests for Alzheimer's Disease. The result was negative and she came home and reported: “The doctor said that Alzheimer's isn't when you forget where you put your keys, it's when you forget what they are for.”

While we were all relieved at the results, the short-term memory deterioration continued a bit at a time. My first reaction was frustration. The doctor had said she didn't have Alzheimer's, and since I wanted with all my heart to believe everything was fine, the problem had to be something non-medical. Maybe Mom was just preoccupied. Or could it be that she just wasn't listening? Although my mother seemed perfectly normal, she was no longer as dependable as she had always been. She would forget appointments, special events, or even parts of conversations. It felt as if each phone call began with a review session just to make sure we were both on the same page.

Eventually, though, I stopped pretending that my mother was just being inattentive and realized that I was losing her, a little bit at a time. Perhaps living clear across the country made the progression of the disease more evident. When I would talk to her or see her, the difference was sometimes startling.

One day I called her on the phone and we began talking. I was pregnant and very ill and when I mentioned that I did not feel well she asked what was wrong. When I told her that it was just the morning sickness she seemed confused. Suddenly I realized that she didn't even remember that I was pregnant! I was carrying her own grandchild and she had no idea what I was talking about!

In many ways, I began to mourn the loss of my mother that day. I adore my mother and owe her so much, but I realized that, at least for the time being, we could not continue to build on our relationship. We have a past together, and something of a present, but we are not able to build more memories because the events that occur get lost somewhere in transmission.

Today my mother has no short-term memory and very little long-term memory. Otherwise she is relatively healthy considering the diabetes, arthritis, and other physical ailments she has long dealt with. The doctor's biggest concern is that she has lost weight, as she doesn't have much of an appetite.

Even though her body, as she would say, “just keeps plugging along,” and it is nice to be able to see her and touch her, I miss her companionship so much. My mother was so bright and funny and a serious gospel scholar. As on old high school friend said the other day, “Your mother read the scriptures every day even before we were supposed to!” She was so talented. Why didn't I get her to teach me to cook (or sew or anything?) when she could still remember how? Why didn't I ask her how she possibly held her tongue when I told her, at the omniscient age of 13, that I was “too smart to stay at home with a bunch of kids to do menial labor”? Why didn't I ask her how she continued to influence me so, even when I became such a rebellious, obnoxious teenager?

My mother was the only person on earth who reveled as much as I did in every tiny accomplishment of my children. Who else could I tell that my daughter had blown her nose in a tissue or that another child had gone “in the potty”? Did anyone else in the world get excited when one of my children did something completely insignificant? How I wish that she could remember who they are! How I wish that my children knew my mother the way she really is.

I have tried to explain to my children what has happened, as few of them remember the real Grandma Moore. I say that Grandma is still in there, but it's as if she's locked behind a door in her mind and she can't find the key to let herself out. I don't want them to think of her as someone who only makes nonsensical comments and who, on occasion and totally out of character, lashes out at them for no good reason.

My nine-year-old daughter, Alana, is probably the most sensitive about the situation. She is just young enough that she doesn't remember the real Grandma, and just old enough that the new facade is painfully lacking to her. She misses the grandma she wishes she had and she takes negative interactions very personally. Last week, when this came up again, I thought to look through a file folder of old pictures. Most of our photo supplies are still packed away awaiting the move into our some-day-to-be-completed home, but I was fortunate to find one blessed picture.

The picture I pulled from the file was of Alana at about 18 months of age. My mother, whose memory problems were relatively minor, was visiting us in Florida. Alana was on her grandma's lap, drinking a bottle. My mother was smiling from ear-to-ear and giving her newest granddaughter a bear hug. Alana has no memories of this kind of interaction with her grandmother. When I found the photo, I picked it up and said, “Alana, this is your real grandma.”

Tears filled her eyes. “Really, Mom?”

“Really, honey,” I replied.

I am fortunate to see my mother many times a week. It is an odd blessing that her memory is now so bad that she doesn't have the pain of being so aware of her condition. I am so blessed to have such a loving father who is so good to her and who cares for her each day.

This is not how my parents envisioned their retirements. They were going to travel, serve a mission, maybe even golf. There are dreams that are lost, or at least put on long-term hold.

But I am truly grateful for the gospel of Christ that tells me that my mother is not locked behind that blasted door forever. One day the key will be found and the door will be opened. And on that day my children will meet the wonderful woman that I know and love and they will, undoubtedly, love her, too. What a reunion that will be!

Perhaps she can even teach me how to make her pie crust.

Kathy says:

Alison, you have added a delicious depth of meaning to the phrase “pie in the sky.” The anticipation of a tasty pastry whipped up by you and your dynamite momma will motivate me to try to live a life worthy of exaltation. Thanks for helping us understand the nature of this loss by allowing us to bear some of the burden as your sisters who love you.

Meanwhile, dear, dear anonymous sister, thanks from the bottom of our hearts for reading and writing. Your question is likely to impact every Latter-day Saint who is blessed to have parents with staying power. It has certainly caused me to review pleasant memories of the care my Uncle Bill lavished on his mom, my adored Nana Virginia after whom both my mom and my daughter are named. He moved her into a cute little home he owned directly across the street from his family, and he and my Aunt Bessie popped in and out all day to make sure she was having fun and wanted for nothing. I thought again of the beautiful little home our Uncle Dave built on his Farmington property for his wife's parents, Grandma Veda and Grandpa Luman. It is not unusual for LDS families to have a separate apartment in their homes or on their property for exactly this purpose, and I think it is an especially sweet and important part of our heritage to welcome this responsibility.

I also remember two prominent LDS friends, whose names we probably would all recognize, saying their elderly dads completely lost control and sometimes indulged in strange tantrums complete with awful language that was totally out of character for them. They said even during those times they felt blessed to have the spirit of their beloved patriarch in their homes, knowing this was a temporary trial on both sides, and their dads were still the same eternal beings as always; just undergoing another difficult bout of “growing pains” for everyone in the family to manage with faith and patience.

This is the ideal.

The reality is, you will be tested and exhausted beyond any other trial, in many cases. It will be like caring for an infant, except your parents are much heavier, and they will get less and less capable, rather than more so. All parties are aware that the goal is a dignified death versus a happy life. We dread this reality, yet it needs to be addressed.

I think this is the blessing of elder care. It brings a perspective that no other experience can offer, and presents a challenge that can prove us and humble us beyond any other. It makes concrete the ultimate paradox that the most bitter, dreaded, toilsome, and distasteful service is the very experience that bears the sweetest and most desirable fruit.

No wonder you question your sanity! This is a daunting task that strikes at the core of our mortality. Are we equal to it? Let's all pray for those who undergo this voluntary crucible, for those who have no more choices left them, and for the wisdom to make the right decisions when our turn comes.

We're going to keep you in our prayers, anonymous sis and Alison. And let's remember our moms and dads too. They don't enjoy these growing pains any more than we do.

Alison Moore Smith is a 61-year-old entrepreneur who graduated from BYU in 1987. She has been (very happily) married to Samuel M. Smith for 40 years. They are parents of six incredible children and grandparents to two astounding grandsons. She is the author of The 7 Success Habits of Homeschoolers.