Wednesday, September 21, 2011

Alzheimer's Action Day - Our Family's Journey to Remembering

[Editor’s note: Almost four years ago, on October 16, 2007, I posted about my family’s journey down a road all too familiar to many other families: the road called Alzheimer’s Disease. In honor of Alzheimer's Action Day - September 21st - is an excerpt from that post.]

Some of you know that my mother, Jacqueline Austin MacEntee, was diagnosed with dementia, one of the early indicators of Alzheimer's disease in 2000 at the age of 58. I can relate to you what I and my family had to endure just to get Mom diagnosed.

The diagnosis currently starts with a visit to a doctor for basic tests (blood, liver, cholesterol, heart, etc.) and then being sent to a specialist for neurological testing such as an MRI. Once everything is cleared as to possible causes, comes a visit to a gerontologist and a test consisting of about 30 questions. Questions are basic (the current day or year, the current president, etc.) and some are more complex (reading a small story and then relating what the story was about or who the main character was). This is usually when the diagnosis is positive as to Alzheimer's Disease.

And so it begins. You know it eventually has to end, and how it ends, but it just seems like it never ends.

You notice a marked change in behavior and instances where Mom just isn't herself. Many times you call and ask her what she did over the weekend or what movie she saw and she can't remember. Then it becomes the lack of remembering simple things like how to drive from point A to point B in a small town where Mom has lived for over 40 years.

The disease progresses to affect employment and the means of earning a living and surviving financially. You deal with the chief at the village police office where she works as a dispatcher and clerk when he tells her that she has "psychological problems." She loses the second job at a local restaurant because she can no longer handle the bookkeeping responsibilities. You step in to get Mom out on early retirement via Social Security and still you need to fight, hire an attorney, and attend hearings, meetings, etc. But you feel good that you are able to get Mom out on retirement early so that she can enjoy the few good years she has left going to movies, shopping, etc.

And the denial, the denial, the denial -- from both Mom and the rest of the family -- that this is really happening. Much of the denial is the realization that by watching Mom and the deterioration of her condition, you could be looking in a mirror held up to your face so that you know your own mortality. Even worse, you come to the realization that this could be you. "There but for the grace of God . ."

You drag your spouse or partner into the mess, the person you want to spend the rest of your life with, the person who may very well be doing all this for you one day. But you know that he or she would gladly make the sacrifices just as you would for him or her or for his or her parents.

Then there are the financial scammers that come out of the woodwork. Her "financial advisor" at New York Life who talked her into an annuity that only made money for the advisor. And then the same advisor selling Mom expensive health books and vitamins as a treatment for the disease. I know - I cleaned out the house, saw the books, and have the receipts.

And as the months progress into years, the gerontologist's test is given at least yearly and the number of correct answers dwindles from 22 to 20 to 17.

You decide to take the car away after several instances of U-turns through the grassy median of a 4-lane highway. You notice unexplained dents and dings to the car or even to the house or garage. You have to fight and get a letter from the doctor to give to DMV in order to take the car away.

If you are smart or lucky or both, you find a good elder law attorney and you do this early when Mom can adequately communicate her wishes. Wishes such as "do not resuscitate," funeral and burial, will, assets, care, etc. The power of attorney kicks in and you have so much more responsibility than just making sure Mom is comfortable. But you know you and your family are lucky, and smart, because you did this early. You didn't wait to find out that investments were sucked dry by scammers who sell home improvements or driveway repaving or annuities. Boy, were you lucky.

While you sort through the tangled financial web of the past five years, you try to arrange for in-home care for Mom, knowing that having the familiar around her is the best thing. You arrange for adult day care at the local hospital where on a given day she is probably the youngest one there but most definitely the most ambulatory. You bring in local women who specialize in elder care to stay with her the other 16 hours of the day and also to transport her to day care and doctors' appointments. You want to keep her in the home she bought 25 years ago, as a divorced parent with two boys and little credit. You know she deserves this and you and the rest of the family make sacrifices so this will happen.

You decide that while you've enjoyed living in California for the past 20 years, you can't handle all the tasks and responsibilities from so far away. The telephone, e-mail and the internet only work up to a point. You move to Chicago so you are at least a short two hour flight away, with three flights to New York each hour from O'Hare.

You get so caught up in the politics of family, and the squabbling and the pettiness that at one point you decide to walk away altogether. You decide it isn't that you aren't up to the responsibility but that you don't know why family has to make it all so complicated - especially those who are selfish and want this to be about them and not about Mom. A simple Thanksgiving day phone call turns into a yelling match with your aunt who doesn't know how to handle Mom or why she has been accused of stealing a book or moving furniture. You decide you need a break so you don't call for close to six months and you drop out. And you feel guilty, as you should. And every time you are willing to put it behind you and focus on what Mom needs now because you are back in the mix, someone is there to remind you of how you walked away.

And besides bleeding tears, you bleed money. Your mother's money. The money she worked so hard for at the phone company before she went out on retirement due to a bad back. The money she earned working for the state at the police station. The SSI money. You run credit reports and find out there are over 100 credit cards in her name, many from stores like Macy's (where she had 6 accounts!) with clerks who say, "would you like to save 15% today by opening a Macy's account?" knowing that Mom already had other Macy's accounts but the $5 commission was all that mattered. You close all the accounts, cash out IRAs and that damned annuity at a loss. You end up paying federal and state income tax as if Mom earned over $100,000 that year all because you had to cash in the investments for her care. But you also know that this is the best thing to do in this moment because it means months of in-home care, and safety and security. That's why we save for rainy days and right now it is pouring.

And the number of correct answers, at least on that test, becomes 15, then 12, then 10. For the rest of the process there are no correct answers, there are no touchstones because you've never been this way before. Oh how you don't want to be here right now but oh how you do because it's all about Mom.

Besides untangling finances, you have to untangle agreements and understandings that Mom entered into with other family members but had not the mental capacity nor the right to enter into. You deal with the house in Florida and you deal with Mom's home. You deal with the Grahamsville property that Mom inherited from her great-grandmother (Therese McGinnes Austin) for all her years of sacrifice and care. You realize that Mom entered into a purchase agreement with a family member who has since rented the property out but that person can't prove their payments to Mom or for taxes. You know that property meant so much to Mom as a kid but you also know the best thing is to let it go and realize that she was taken advantage of and to just deal with it. You deal, you deal, you deal. Until you think all the cards are dealt.

You fight with other family members who either think they know how to care for an Alzheimer's patient or want to keep denying that their sister has the disease. Because there's a small chance, given that the oldest sister already died from Alzheimer's, that they are next on the list to get it. But you also find other supportive family members who are glad to pitch in and actually make so many sacrifices for your mother when you know they already have their hands full.

Then comes the time to talk to Mom about finding a "facility" for her long-term care when either the finances or patience runs out, or both. You dread the discussion you have to have on Mother's Day, of all days, but you find she takes it well. Then you wonder if she really understands that a facility means a nursing home. You wonder if she is clear enough to figure it out over the next few weeks and retreat back into the denial stage. You have visions of that scene in the Exorcist when the priest puts his mother in an inner city nursing home yelling "Demi, why you do this to me? I'm afraid Demi." But you realize that when you see her a month later that she's lost over 20 lbs of excess weight, she's eating better, she has lots of activities. She is safe, she is happy, she is living in the moment.

Next you have to clean out the house you grew up in and you don't know where to start. You make six trips in one year, buying boxes when you step off the plane to Newark. Working long hours sorting through every scrap of paper, every wadded up tissue in a sweater or pants pocket because it might contain something of value, every book some of which would have a gold bracelet as a bookmark. You remember that Mom took care of your great-grandmother and your great-aunt (Ethel McCrickert Hannan) in that same house and realize that their possessions are still there. You get angry when you find all the crap and junk she's been sold, be it greeting cards (why are there 100 of the same Thanksgiving card from a Hallmark store? I know I won't ever live to see 100 Thanksgivings), or the wrapping paper that people sell for their kid's school, or the needless health books, vitamins, and other quackery and the expensive overpriced dolls from China which are probably decorated with lead paint. And you hope that however crappy or tacky or useless, these things brought her joy and made her happy, even if for a moment.

You sort, you throw away. You become cold, efficient, without feeling as you decide not to pause and look at a photo album - you just toss it in The Box. You donate clothing to thrift stores, you sell antique items that no one wants and that you can't send home to Chicago. Your aunt has a great idea to donate most of the 100+ dolls to a shelter for battered women and children. And when you are back home, you enjoy The Box and all its photos, diaries, etc. later in the year - it is the beginning of this project and other genealogy projects. You feel lucky to have photos from your ancestors and to begin to know who you are.

You have lots of help from family members that you can never thank enough. You didn't do it alone although you feel lonely and have a deep sense of loss most of the time. You thank your Uncle Jerry for all the help from the beginning - for attending hearings, meetings, taking care of finances, arranging in-home care and the nursing home. All of this was not possible without him and without Nan's support. You thank your Uncle Lem and Aunt Judy for helping clean out the house. You thank your Aunt Joan for providing a year of room and board to Mom despite the aggravation and the problems. You thank Beth for making the trip from Delhi and visiting. You thank all your other relatives who make visits at the nursing home, visits Mom won't remember five minutes later, but visits that you know make her happy despite the visitor being saddened by what they see or wanting to cry. And you thank all her friends, even the ones who no longer keep in touch because it is just too uncomfortable.

You keep in touch with family and friends who call and want an update on Mom. Or you get updates from them when they go for a visit at the nursing home. While you notice the deterioration in her condition on each visit, you hear from relatives that she has an ankle brace due to a fall, or this problem or that problem. And still you know you've done the best thing for Mom.

The time you get to spend with Mom becomes shorter and shorter - not because you don't want to visit, but because her attention span doesn't enable her to focus on any one thing for more than 30 seconds. You call the nurses’ station to talk to her and after a short conversation, you realize she put the phone on the counter and walked away. Not because there was something more interesting, but because she can't focus.

And the list of correct answers to that test are now in the single digits. You know what the future holds and you dread it. You don't want to go through the first time Mom doesn't know who you are, but you know it will happen. You already see the difficulty she has in eating, getting on and off an elevator, or getting in and out of a car. You know what the next steps are because just like this article, you've read them in some blog or book or news article or website. You know Mom will suddenly stop talking, stop walking, stop eating, stop breathing.

But you will always know that you are your mother's son. And that she knew that too.

I've decided that I can either be bitter or I can be better. And bitter won't change my mother's condition - just mine. I choose better and the way I can do that is to:

  • talk about my mother's experience with people like writing this article;
  • mention the bad times as well as the good times, the negative as well as the positive but focus more on the positive - the negative is there as a reminder but not something to regret for it can't be changed;
  • not regret the journey of Alzheimer's for me, for Mom and for the others involved - for a journey has lessons;
  • understand that I did and do the most that is possible for my mother's care given the circumstances, finances and that I was lucky to have other family members involved; and
  • honor my mother and the way she raised me by not forgetting her sacrifices and her love, her challenges and her gifts, her mistakes and her accomplishments.

And I intend to live life and every day as if it were important and my last. I wouldn't make someone else go through that dark twisting tunnel of care unguided and with those feelings of helplessness. Knowledge is power and power, be it the power of health, finances or love, can help you conquer all adversities.

© 2011, copyright Thomas MacEntee


Donna Hague Wendt said...

Your beautifully written story really touches my heart. And tears flow. Thank you for using your experiences to help others who may be faced with the same circumstances.

Dave Crockett said...

This is a very moving article Thomas and very well written. I had no idea what you and your mother were going through. I wish that part of the family stayed in touch. I would have been there to help you.

Randy Seaver said...

Thank you for sharing this again.

You are a good son.

Brenda Leyndyke said...

Your mother raised a wonderful son. This poignant post touches me as I recently visited a favorite aunt with alzheimer's. I hope you find comfort in your memories of what sounds like a very lovely woman.

Cynthia Shenette said...

Your beautifully written story brought tears to my eyes as well. So much of what you write is familiar. The tough times are past for me and for my mom. One of the reasons I started my blog was to remember the good times. After a long journey, sometimes the good times get lost along the way...

Thank you for sharing this. Bless you both.

Lynn Palermo said...

Thank you for sharing this Thomas, it too moved me to tears, clearly your Mother was a wonderful woman, how do I know? Because in everything you write and represent you do with the utmost of integrity. I'm sure we have your Mother to thank for that, thanks again for sharing.

Nancy said...

It takes a great deal of courage to be this transparent about something so personal and painful.
Thank you for writing this. It will be invaluable to others on the same road.

Denise Spurlock said...

Thank you for sharing your experience. To go for "better" instead of "bitter" can be a difficult path. Your post may help someone else who is in the same situation.

Joan said...

Thank you for sharing this. As I read your post, I felt like you'd been eavesdropping on my life. My mother, too, had Alzheimer's or another dementia. She had to go into a nursing home when she couldn't take care of herself properly. I will never forget how hard I had to fight with the insurance company that issued her long-term care insurance policy to get them to pay what she was owed. I fought with the nursing home to make sure they knew what was normal or abnormal about her behavior. But I slept better knowing that she was safe. It was frustrating. It was sad. And it was heart-breaking when she couldn't remember my name on my birthday.

But in some ways I had it easier than you. I didn't have to fight with family, too. If I had to fight those battles like you did, I don't know if I could have followed through. Being stubborn sure helped, though. And knowing that someday I might need someone to do the same for me helped me keep going. I wish you luck and strength to keep doing the right things for your mom. You are a good son, and your mother is better for what you've done and continue to do for her.

Kathryn Smith Lockhard said...

Thank you for this touching story about your mother and the difficulties and heartbreak a family faces when confronted with alzheimer's. I have known two people in my lifetime with Alzheimer's and watched their decline. My dad had dementia, it never progressed and he always knew who we were. Your story gives courage to others.

Andrea Kelleher said...

Wow. I was so incredibly moved by your words. Everything you saw, felt, heard, and lived through was just like my husband's journey. Both of his parents had Alzheimer's. This is your truth and thank you so much for sharing it with us. It reminds me we are never alone in our struggles. You are a good son!

Anonymous said...

This is a very touching tribute to your mom, and the very sad journey which is Alzheimer's disease.

I'm so glad you chose better over bitter.

Joan Miller (Luxegen) said...

Thomas, thank you for sharing this. You are who you are because of your Mom. She raised a good son.

Kay Strickland said...

My mother is difficult, not suffering dementia, but I felt like you were talking to me and my brothers,too. Your sharing nudges me to be better - not bitter. Thank you.

Judy Webster said...

A brave and beautiful piece of writing. I am going to share it with a friend of mine who lived in a remote area and felt terribly alone as she cared for an Alzheimer's sufferer.

Kim said...

I want to thank you for having the courage to share such a personal and private life changing experience with us. I needed to hear this today. I am desperately trying to convince family members that my father needs testing so that he can get the medical assistance he needs before its too late, and reading about the realistic side to this is what I needed as tears filled my eyes for you. Thank you again.