Letter From Vivian on Mother's Day

Hi, just wanted to let you know how Mom is doing, and say Happy Mother's Day. Many of you have told me this would not be easy, and boy you are so right. I look at Mom with such sadness and pity, and wish I could do more for her to make her pain go away.

Think of Mom when you say you can’t find anything to wear. It is sad for someone who had enough clothes to wear for the next 10 years and never wear the same thing twice. Now she is not able to dress herself. She was putting them on backwards or inside out. I was wondering why she didn't want to get out of her PJs, but watched her one morning,. She didn't know what to do with the clothes she had in her hands.

She wants to wear the same thing over and over again, because it is less painful to pick out something else. Now I dress her and make her look pretty. The next time you dress yourself and find something to wear, just be glad you know what to do with it and where it goes.

Think of Mom, the next time you take a nice warm bath and are enjoying it. Appreciate the fact that you’re not afraid of the water, that it feels so good to get nice and clean, and that you can get out of the tub on your own in privacy. (And that you can bathe alone.) The only time I enjoyed taking a shower with someone was when it was in a passionate moment and cleanliness was not the only thing on my mind.

My girlfriend, Jeannie, has helped me gather a lot of her clothes to donate to the people in need and to a church. We have filled 30 trash bags, and she still has more. I cried the first time I did it, but it gets easier now knowing that someone can use them. I cried, too, because I can’t fit in any of her things. She is so tiny, and I am so big.

The next time you go into a room and forget why you went there, think of Mom. She does it all the time, now! The only problem is that when we retrace our steps, we usually remember why;she doesn't.

She had more shoes than Imelda Marcos and can't wear them anymore because she can't walk without losing her balance. She sometimes sneaks in her room and puts on a pair of heels and just stands there, afraid to move. She has fallen a couple of times, but luckily she has not hurt herself. I don't know anyone that has feet small enough to wear them. If you know of someone let me know. Think of Mom the next time you put on your favorite pair of shoes and really enjoy how good they make you feel.

She is going blind in one eye, and the doctor is constantly testing her to see if she will need surgery for glaucoma. She looks for a new pair of glasses, but the ones she has are brand new. I look at her eyes, and they are so sad. She tries to cry, but her tear ducts are dry, and so no tears will come. I cry for her and have enough for the both of us. But she never sees me cry.

Think of Mom the next time you're at a dance and see a senior lady sitting and waiting to be asked. She is probably remembering when she was young like you, and burned up the floor at a ballroom somewhere, listening to a great big band, entering in jitterbug contests, a marathon, in her best dress that she can no longer fit into or is in the back in her closet of memories. Ask her to dance and give her a thrill again. It only takes the length of a song to make her happy. Mom used to go the old Sweets Ballroom in Oakland, Calif., and that is where she met my dad.

Mom asks me everyday if she can help me do something. I wish she could. She wants to wash dishes, but doesn’t know what the soap is for. If you come to my house, and you happen to see a dirty dish or glass in the cupboard, just take it out quietly and put it in the dishwasher for me for I missed that one.

Think of Mom when you want to go for a walk and then put it off because of one excuse or another. She never drove a car and loved to walk. She used to walk all over Hayward instead of taking the bus. She never asked anyone for a ride. Now she can’t walk anywhere without the aid of a walker or holding on to a wall.

Think of Mom when you remember the good times you had with your friends and family and can still laugh at the funny things you did with them, and you can still remember who they are. Even the bad, can be blessing, if you can remember it.

Enjoy the next book or magazine you read, and can remember it a day or two from now how much you liked it and how it enriched your life. Mom loves the magazines that she gets and reads the same ones over and over again. She enjoys them every time she reads them because to her, they are new stories. She’ll pick up the book ten minutes from now, and will read the same thing again. It does save money. I just hide them, and then in a week change them again.

I quit telling her or talking about the people that have died in the family because she goes through the loss each time. She still wants to visit her sister who has passed. She wants to visit her friend that died many years ago in Pennsylvania, too.

Enjoy your home and be thankful that you don’t have a mean daughter taking care of you. She keeps asking to go home because she has visited us too long. And her dog must be missing her. Your heart is where your home is, and I have broken her heart.

I hug her a lot, especially when I lose my cool and get angry because I think she doesn't want to behave. It is sad how our roles are reversed. Funny, I always wanted a child, and now I have one — and a defiant one at that. I still can’t tell when she is Mom or when ALZ takes over.

Please don't feel sorry for Mom or me. This is a choice she made; not talking to me about what to do if and when this was going to happen or preparing for her care. What would make me happy is to tell you, not to put your children through this. If at all possible, prepare yourself for when the time comes, if you are fortunate enough and foolishly want to live forever but your mind and body doesn’t want to do the same.

Write memories down or tell your children stories about yourself or your family, before you get too old and don’t remember the stories correctly. Even if your children aren’t interested now, maybe your grandchildren will want to know. Everyone has a story and yours is unique. Mom talks to people now, and tells stories about herself, but gets confused about whom she is talking about.

Mom still knows who I am, but I know that soon she won’t recognize me. Some Moms make bad choices, but who hasn’t. We live with the choices that we make. Who is to say what a good Mom is? It is up to the individual. If you are lucky enough to be a Mom (or Dad), be the best you can be. Maybe you are, only your children know. If you still have the chance, and think you need to do better, do it before it is too late. You don’t get another life to make it right.

If you have a Mom and she is healthy, be thankful if she can take care of herself. If she is ill or in a rest or convalescent home, don’t pass up the opportunity to visit and laugh with her. There might come a time when you will no longer have the chance. Hug her real tight and tell her how much you love her.

If you lost your Mom too soon, I am sorry. I just hope you had a chance to enjoy her when she was here.

I hope you miss her as much as I miss mine.

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I Miss My Sister

By Virginia F.

My older (by one year) sister, Lucyann, now 60, was diagnosed when she was 58. She was a well-liked (by peers and students) professor, a great daughter and the best sister anyone could have. She cared for my dad during the last 10 years of his life, while she was still teaching and/or working at the university, until his death about four years ago.

During the last three years, we started to notice that she was angry a lot, particularly with my Mom, for whom she had absolutely no patience. She would not go to work and claimed headaches and/or migraines. She took a lot of naps and always went to bed early. She would spend a lot of time watching TV, the same happy-ending movies or tv shows, over and over. She was a great baker, but her cakes were definitely not the same. When she stopped paying her bills, we realized something was very wrong and we convinced her to see a psychologist. To make a long story short, the psychologist ordered a lot of tests and referred her to a neurologist, and there it was -- FTD. She retired from work and applied for Social Security Disability, which was granted about 9 months later. She cannot live with my mother, and my mother cannot live alone, so we had to separate them.

My Mom lives with my brother because she cannot live by herself anymore. Social Security is not enough to cover my Mom’s bills, so we are selling her house to pay for her care. Lucy has reached the stage in which she cannot be alone either, so she spends time in Puerto Rico, Tennessee and Massachusetts where some of my siblings and I care for her. We are still figuring her out. Her diet has changed -- sweets, soda, pizza and hot dogs have become her favorite foods – so she has gained weight and we had to upgrade her wardrobe. We never know when she will agree to exercise (mainly walk), but she will always agree to go shopping or to the movies. She has lost empathy and there are absolutely no filters, especially between brain and mouth. There is no secret she is able to keep.

I miss her phone calls, advice, hugs... I miss talking to her. I can’t figure out what she is thinking when she is staring into space, and I think that she is actually unable to tell me. I hope she is somewhat happy. I hope she feels safe and cared for. I hope she feels how much we love her.

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Tips for Caregivers – Communication Techniques

“It’s not always what you say but how you say it.”

• Speak slowly and clearly
• Be aware of body language
• Use visual cues
• Approach from front
• Address by name
• Meet at eye level
• Short questions, one at a time
• Break down tasks into one step at a time
• Repeat using same wording, if that doesn’t work, rephrase
• Avoid negative statements (don’t use “don’t”)
• Allow adequate time for response
• Utilize humor
• Keep talking even if nonverbal

Communication is hard because person cannot remember things, can’t find words, difficulty understanding what is said, difficulty paying attention, remembering steps, blocking out background noise, being sensitive to touch, or tone or loudness of voice.

To Help Make Communication Easier:

• Make eye contact
• Call the person by name
• Be aware of your tone and how loud your voice is
• How you look at the person
• Body language
• Encourage 2-way communication as long as possible
• Gentle touching
• Try distracting/redirecting if communication creates problems
• Be open and agreeable even if the person is difficult to understand
• Let them make some decisions and stay involved
• Speak at eye level
• Offer simple step-by-step instructions
• Repeat instructions and allow more time for response
• Don’t talk about the person as if he or she isn’t there
• Don’t use “baby talk” or a “baby voice”
• Ask yes or no questions
• If they make a mistake say, “let’s try it this way”
• Say “please do this” instead of “don’t”
• Limit choices – do you want chicken or beef?
• Instead of asking if they’re hungry say, “dinner is ready”
• Try not to say “don’t you remember?” or “remember when”
• Use visual cues

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