Anne LeGare

Bob contacted me through this blog, after reading a post about my mom. Please see his page  here.  Here’s what I learned over the past couple of years:

First, I’m so sorry that you’ve received this diagnosis. I know it’s a blow, and you are probably still reeling from the information. Have you found the yahoo discussion board about this? http://health.groups.yahoo.com/group/cbgd_support/

Here’s a website with some case histories: http://www.tornadodesign.com/cbgd/

Before I go to the practical things, I’d have to say the first thing I would get in order for you and your loved ones is your spiritual life. I know that’s preachy, but while your mind is sound, repent (if needed) and put your trust in Jesus Christ. Then your eternal destiny is sealed and you can face this with peace and hope. I’m mentioning this first, because in my reality, this is the most important decision you will ever make. If you want to know more about this as time goes on, feel free to ask me.

Here’s the rest:

I asked my mom your question tonight to see if she had any insights. She said she wished she had followed her physical therapy routine and not blown it off. She also wished she’d been diagnosed right away like you, instead of being treated for Parkinson’s for 2 years without any effect.

I wish she had been more physically fit, and skinnier. When you can’t move, you don’t want to weigh so much that it takes two people to help you. My mother was heavy to begin with, so her immobility has packed on about another 40 pounds. It’s made me want to stay skinny for my loved ones so they can lift me, if needed. Also, most health aides are women, and have difficulty with overweight folks. I noticed on your blog that you are fit, so that’s a great thing.

I would also say if you need to repair relationships, do it now.

Perhaps you can voice record your thoughts to your loved ones or make a video while you can still speak clearly. Perhaps make a video for each person. Let them know the real you before your words come out strangely. For instance, when my mom wants to say “yes,” she says “no.” One time she said she had to go to the “garage,” instead of the bathroom. Sometimes it’s comical, but it’s extremely frustrating to her. Maybe take kids to places you valued in your childhood, so they can really know you.

The administrative things I did with my mom are:

A living will with a DNR order (learn about the DNR and see what you desire). My mom doesn’t want feeding tubes or heroic measures to bring her back to life. But then again, she’s lived her life and is 84. You are young, so you may approach it differently.

Give someone a General Power of Attorney to act on your behalf in all things (make it as broad as possible if you have someone you trust).

Give someone a Medical Power of Attorney to make all your decisions (you may have to specify what those things are after a certain point).

Do these while you can still move and sign things. My mother could not do this 2 years after diagnosis (4-5 years into the disease). We had to wheel her into the notary public offices several times — very difficult — she had to sign with an “X”.

If you have money in mutual funds or such, assign an agent as a Transfer on Death person on each account. Make sure that person is a joint authority on your checking account too, and has access to all internet accounts. This also allows your heirs to avoid probate. But hiring a good lawyer for an hour or so to go through this stuff might not be a bad idea.

I did it all on the internet through Legal Zoom for a will, the living will, and through Google search found state-specific powers of attorney.

Don’t fight your caretakers when they say it’s time for you to get help. For instance, if needed, just wear the Depends. No one will know, and you will help yourselves and your helpers. You may suffer from diarrhea for a time, and then terrible constipation. Find out now what laxatives work for you. My mom takes Miralax (lots of it).

My mother fought me tooth and nail about getting someone to bathe her (it humiliated her). But she was falling so much, she was dangerous in the bathroom, and her bad arms couldn’t reach to clean the unmentionables. After she finally gave in, she said “I wish I’d done this a long time ago.” Health aides are wonderful at what they do.

My mom still fights about wearing the clothes that help her helpers. She wants to maintain her former life, which is difficult for those of us taking care of her. We found plates, cups, and utensils that are good for the unrelenting grip. The plates have curved sides so she doesn’t push food off the plate. She won’t use the curved utensils, but again, it would help her helpers if she did. I found this to be a helpful website: http://www.wrightstuff.biz/index.html

Have your loved ones look into local Hospice providers ahead of time. I know that sounds dire, but I had no idea how much Hospice could do. When your doctor thinks you are in the last year of life, he/she can sign the hospice order. This has allowed my mom to get everything we need within 24 hours of request. All this wonderful equipment came in — stuff Medicare wouldn’t pay for before. My mom went into a funk when she heard “Hospice,” but then realized the word had no power over her destination or how fast/slow she gets there.

Don’t be afraid to take an antidepressant for depression or anxiety. This is very common, and these drugs can help immensely.

Check out message boards and medical journals about every quarter. They are learning more and more, and some drugs are available now that weren’t before. The yahoo group has been invaluable to me.

This is a lot to take in — and I hope I haven’t overwhelmed you. It will happen slowly. My mom has enjoyed these years, even through the pain sometimes. She is very independent, and understands what is going on. She is able to interact and joke; play games and watch TV. If she knew how to use a computer, she would have. She can still feed herself and brush her teeth. Quality of life is in the eye of the beholder, and we can’t judge for another what “quality” means.

I know all this is years off for you, but these are the things I’ve been doing. I hope it doesn’t scare you, but informs you. I had a big neurological problem two years ago, and am slowly recovering; but I found myself overwhelmed and scared to the point of panic sometimes. You are not alone. Others can and will walk this road with you. God will never leave you or forsake you if you put your trust in Him. I will subscribe to your blog and communicate with you along the way if that’s okay. I’ll also pray for you daily.

I’ve never been very close to my mom. I suspect there are multiple reasons for this, some of which were visited upon her by the sins of her mother and her mother’s mother. Consequently, we’ve never been buds. Now I’m working hard to be a good mom.

I’ve never really corresponded with my mom. Her idea of a letter was to clip an “Ann Landers” column and send it to me with a one-line note. My idea of correspondence was to shove a Christmas card into a box of packages waiting to be mailed. Now I send my adult kids one-line emails. That needs to improve.

I’ve never liked the things my mom likes. She’s crazy about jewelry; for me it’s one more thing to think about when getting dressed. But when my dad divorced her, she sent me her West Point miniature engagement ring, and her wedding band. Now that’s something I liked to receive.

I’ll never fully understood my mom. I’m a singleton and she’s an identical twin. It seems identical twins can’t “leave and cleave,” since they’ve been “married” since the womb. My dad once said “never marry and identical twin – you can’t compete.” Now I’m raising identical twin girls. I hope I raise girls who don’t visit this sin upon future husbands.

I’ve never lived close to my mom since leaving for college at 18. And I’ve never returned to the nest, except for occasional visits for Christmas. After we had five kids, my mom came to us, about once a year, or once a birth, whichever came first. She was a big help, especially with the twins. Now she’s lives 20 miles away at assisted care. That’s close.

I’ve never talked on the phone much with my mom. She would call once every two months whether I needed it or not. I would call in the intervening time, mostly out of guilt. When we talked, I controlled the conversation by my rude behavior, telling her I’d heard her stories before. Now I’m very aware of how my daughters and I communicate.

I’ve never been as brave as my mom. She’s dying an agonizing death in which she knows what’s happening to her, symptom by symptom. Her “death by brain loss,” is like being fully aware that you have Alzheimer’s Disease, and are trapped in the body it produces without the resulting memory loss. Now I think about the treasure of good health and a sound mind.

I’ve never been fully sympathetic to my mom’s plight, even though I’ve been fully aware of her disease progression. Now she has every horrible effect the disease produces. I’ve been told she’ll die in less than a year. I’ve just enrolled her in hospice. This is CBGD:

Cortico-Basal Degeneration by Dr. Basil Ridha, Dementia Research Group
This is a rare progressive neurological disease that causes disturbance of mental processes and motor skills. The disease is named after the areas of the brain that are principally affected. Cortico refers to the cortex, which is the outer layer of the brain, and basal refers to the basal ganglia, which are deep structures in the brain that control motor skills. In these brain regions, there is more significant loss of brain cells than in normal aging. Corticobasal degeneration can present in many ways. It can affect mental processes such a memory, vision perception, speech, organizational skills, personality and behavior. It can also affect motor skills causing rigidity, tremor, clumsiness, limitation of eye movements, involuntary movements, odd posturing of limbs and difficulty walking. A specific symptom that may be present in corticobasal degeneration patients is the ‘alien limb’, where a limb seems to move without control in a mind of its own. In all these movement abnormalities, one side of the body is affected more than the other.

National Institute of Neurological Disorders and Stroke:
There is no treatment available to slow the course of corticobasal degeneration, and the symptoms of the disease are generally resistant to therapy.

I’ve been whining about my mom lately. She’s frustrated and confused. She’s irritable and depressed. She’s yelling at her caretakers and cussing at them. She’s belligerent. When she laughs she chokes. When she cries she chokes. She’s incontinent. She’s very large and hard to manage. Her money is paying for caretakers. Now I eat with her twice a week and play dominoes. My role is small.

I’ve also had an incurable disease. My mom’s known it all along.

I’ve been a baby – my mom’s baby. I was large and incontinent. I didn’t walk until I was 18 months old and weighed 36 pounds. My mother carried me, changed me, and loved me. Now others are doing that for her.

I’ve been a druggie. Just like CBGD, that can affect mental processes such a memory, vision perception, speech, organizational skills, personality and behavior. It can also affect motor skills causing clumsiness, involuntary movements, odd posturing, and difficulty walking. I was frustrated and confused. I was irritable and depressed. My mom never stopped caring for me, cooking for me, or loving me. Since I straightened out 35 years ago, she’s never reminded me of my past. Now she tells me she’s proud of me and that I’m the daughter she always wanted.

I’ve been belligerent. In the days of my horrible disease, I yelled at my mom and cussed at her. There were no paid helpers during that sickly time of my life, just my mom. I was incapable of fixing myself, and there was no cure. My mom provided my assisted care. Her role was large. Now I’m grateful.

I’ve been cured. My disease had a shorter name than CBGD. It was S-I-N, and I nursed it for 30 years, until I met the great physician, healer, comforter, counselor, and friend. This doctor, Jesus Christ, not only healed me, but He forgave me, and gave me a new life. I introduced my mom to Him several months ago. Now it’s time for me to be close to my mom, the one who gave me life, before it’s too late.