Guilt

Posted on May 24, 2014 by - Uncategorized

Guilt. If you are taking care of someone with dementia, you know this feeling well. It’s like a really annoying neighbor who keeps knocking on your door at inopportune times. When your mind is actually calm, and when you are resting.

KNOCK KNOCK KNOCK. “Hey! Shouldn’t you be with your Mom right now? Why didn’t you stay longer that last visit? Why did you snap at her…you know she can’t help repeating things!”
And that damn neighbor won’t move out. Even after your loved one dies.

My Mom lived with Lewy Body Dementia for four years. She started losing herself at the young age of 61. I was a good daughter, everyone said, for leaving my job in San Diego, and moving back East to care for her. I was selfless, they said. No, she was selfless her entire life, I was just doing what she did for years. She was my best friend and I didn’t want her to be alone on this journey.

She moved into an Assisted Living home, (personal family decision many of us face) because her doctor said she could no longer live in a two story home and could no longer drive. I was there every day. Until I could no longer go every day. Guilt. It was really painful. I was emotionally drained. I needed to breathe. So I skipped a day here and there to re-charge. I learned later that caregivers need to do this to survive. If you don’t take care of yourself, you won’t be a good caregiver for your loved one.

I also needed to make money again, to live. When I started freelancing, I didn’t visit Mom as often. She wasn’t alone, her sisters, her father and her friends visited almost every day. I called every day. When I was there I tried to make it a good visit, by taking her out to lunch or shopping. Sometimes we would just sit and talk in the garden of the home.

One day, after being there for four hours, I said I had to go. She walked me to the door, was visibly sad and said “I wish you could stay longer.” Guilt. Some then, but more now that she’s gone. Why didn’t I stay? Why didn’t I sleep over? On blankets, on the floor? Because I was already so sad about what was happening to her, I didn’t think I could handle it. I am sorry I didn’t stay that night. What I wouldn’t give for a slumber party with my Mom, even if she woke up in the middle of the night and didn’t remember who I was.

Later, when she was in a nursing home (again, a personal family decision), because she could no longer feed herself, and was in a wheelchair, I visited every day. In part, to make sure she was being taken care of properly, and to let her know by my presence, that she wasn’t alone in this latter part of the journey. That was, until I could no longer go every day.

“I see you were here a few days ago Kristen,” a nurse said to me. “How did you know?” I asked. “Your mascara stain was on her pillow.” There was a lot of crying. There was a lot of guilt. How I wish I could have done something to prevent this from happening to her. But of course, I could not. Dementia makes the choice. You do not.

Mom has been gone for a year and a half now. I was with her when she passed. But that neighbor did not move out. I feel guilty for not doing more, for not being by her side every minute, for not getting there in time for her morning wash up every day, even though I knew she was more comfortable when I cleaned her. I feel guilty that I didn’t think to buy her a new pillow when I saw hers was flat. I feel guilty about leaving because I really wanted to go to dinner with a friend and not be sad.

When does the guilt go away? I asked a friend who lost his Dad to Alzheimer’s a few years before Mom passed. His answer, “Never. You always think you could have done more.”

But the truth is, we do all we can as caregivers. We give love, we work very hard to make sure they are taken care of, and not lonely, and not scared as this disease literally takes their mind away. We have to try to remember that our parents, especially, always wanted the best for us. Even though that thought may not have been able to form in their confused brain and make it to their lips so they could tell us. They wanted us to be ok, too. We have to forgive ourselves.

Once in a while, you get a message, a sign that you did a good job. Mine came today. Right before I opened my eyes this morning, my Mom said to me in a dream, clear as day, “I’ll always be your best friend. I’ll never go away…”

That annoying neighbor Guilt? I’m about to go over there and help him pack up his stuff.

Dear Mom,

Posted on May 11, 2014 by - Uncategorized

Momma and her kids - Thanksgiving 2009

Momma and her kids – Thanksgiving 2009

Dear Mom,

Happy Mother’s Day! Your birthday is also in mid-May and sometimes fell on the same day as Mother’s Day. Double presents. Or one bigger one. But I didn’t realize that until I got older.

When I was younger, maybe 8 or 9, I sent you on a scavenger hunt around the house, do you remember? I wrote notes with clues and sent you to find one present after another. One was a new comb that I hid under a loose piece of concrete on the back stoop. I got it at Seymour’s downtown and it was pink. I’m pretty sure I hid candy, probably chocolate covered cherries because they were your favorite, under the lilac tree in the backyard, because lilacs were your favorite.

I think I wrapped up a book you had already read and put it in a really good hiding place inside, somewhere you had hidden an Easter egg once, and Mike and I had a hard time finding it. You acted like it was such a great gift and you couldn’t wait to read it again!

That was who you were Mom, our biggest cheerleader, our biggest supporter, always on our side and believing in whatever we wanted to do. And when we failed, you were there with a hug, and an “I love you honey”.

This is the second Mother’s Day without you. Dementia took you away. You are not sitting on the back stoop. You are not resting under the lilac tree. You are not hiding where the Easter egg was. And that is hard for me to take.

But I know this…you are in the scent of jasmine that hits me right when I need to stop frowning and smell something sweet. You are in those rays of light that come through the clouds when the sun is on it’s way to setting. You are in the butterfly that almost flies into me when I am walking.

And Mom, I know you are in my heart. You are my best friend and I love you so much. I miss you, but I know you are right here.

I love you,

Your daughter,
Kristen

Home

Posted on May 4, 2014 by - Uncategorized

Home. A strong word that brings strong emotions. The Northern California/Northern Nevada chapter of the Alzheimer’s Association tweeted this “How to respond to (your loved one with dementia saying) ‘I want to go home’ ”  http://www.alzheimersblog.org/2012/10/04/respond-i-home/ and it hit…home.

Some may say home is where the heart is, home is where I grew up, home is where my loved ones are. All of these statements are true. To the dementia patient, home is where they feel safe. Safety is so incredibly important. In their mind, which is confused, and only sometimes works right (depending upon how far along they are in their journey), they are lost. So, they will often say or indicate they want to go home. I contend home is where they feel whole, safe and comforted. If you can get them there, you will reduce agitation, and reduce their feelings of being lost…in themselves. And it will be better for both of you. So reassure them that it’s ok. Their feelings of despair are ok, tell them you understand it’s scary not to be home, that this is where they will sleep tonight–even if it is in their own home. Try to bring them to a place where something becomes familiar to them…talk about a place, a vacation, a feeling of soft love and comfort.

When my Mom (who passed away at age 65, after a four year battle with Lewy Body dementia) was getting towards the end, when she had very little speech, she was sitting in bed looking maybe out the window, maybe just looking, gazing, and she said clear as day, “I want to see my Mother.” I got it. She wanted comfort and safety. My Grandmother had passed 20 away years earlier, and yet Mom in the latter part of her disease, wanted to be with her Mom. There is nothing like the feeling of being home.

I suggest to those of you caring for someone with dementia, to validate what they are searching for, and to provide as much comfort and safety as you can. It’s not easy. But you can do it. So that they no longer feel lost, they feel found. They feel at home.

Chicken Soup for the Soul Living with Alzheimer’s and other Dementias

Posted on April 30, 2014 by - Uncategorized

Almost every day I run into people dealing with dementia in their families. This book, a type of “portable support group”, will help so many. There are tips, strategies, stories that will make you feel empowered and not so alone in this journey.

Below are some links to make your purchase easier. Or…if you are in San Diego, you can come to my talk and book signing at the Grossmont Barnes and Noble on June 6th at 6:30pm! Bring your friends! We will share stories, have Q & A and learn from each other.

buy from Barnes and Noble

buy from Amazon

 

ABC’s of Alzheimer’s and Dementia for Caregivers

Posted on April 28, 2014 by - Uncategorized

The Alzheimer’s Association has partnered with the publishers of Chicken Soup for the Soul to produce a new book – Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. It includes stories – many from Alzheimer’s Association volunteers, donors and staff – that represent a wide range of experiences in living with and caring for someone with Alzheimer’s. All royalties from the book, on sale April 22, will benefit the Alzheimer’s Association.

Approach with a positive attitude, from the front with a smile. Address them by name.

Breathe. Take a deep breath before the visit/encounter. They can read your essence and body language before they can comprehend what you are saying.

Cue them. Instead of “Do you want to put on your sweater?” Put yours on, and offer help with hers.

Dementia is the umbrella term. Alzheimer’s, Lewy Body, Vascular, & Frontaltemporal are types of dementia. Alzheimer’s is the most common type, diagnosed 70% of the time.

Every day is a new day. A bad day yesterday does not mean a bad day today. Take it one day at a time.

Follow their lead. If they want to tell the same story or wash the same dish, over and over again. Let them.

Give them purpose. Ask their advice, give them a task. Even if they do it wrong, they’ll feel worthy because they accomplished something.

Honor who they are and what they were. They are a person who had a good, productive life even though they may not be able to feed or dress themselves anymore.

Living with Alzheimer's & Other Dementias front (2)Investigate. If they are agitated, they may not be able to tell you why. Are they hungry or thirsty? Tired? Do they have to go to the bathroom?

Joy. Revel in the joyful moments with your person with dementia. Let those moments fill you up.

Keep eye contact. It establishes trust and helps you make a connection.

Love. Give a lot of love to your person. It makes them feel safe and cared for.

Mistakes. You will make them. You will say and do the wrong things. Forgive yourself, caregiving is a very hard job.

Never argue with the person with dementia. It agitates them and you and makes everything harder.

Oxygen. Take your oxygen first. Like on an airplane. Care for yourself. If you are not a strong, healthy caregiver, you cannot be strong for your loved one.

Practice patience. It could take someone 20 seconds to understand your question and come up with an answer.

Quiet. TV, radio, several conversations at once make it hard for the person to concentrate. Take them to a quiet place to visit or connect.

Redirect. If they are frustrated or upset, change the topic or environment, or suggest an activity they like to do, or offer some tea or ice cream.

Simple. Keep sentences simple. Their brain processes differently and too many details will overwhelm them.

Talk about the old days, things from their past. As their short term memories go away, the long term memories remain.

Use fiblets. “I have to pick up my daughter from school!” says the 80 year old. “Your daughter called, she is staying late to play soccer. Let’s go in here and listen to some music…” Tell a little story and then redirect.

Validate their feelings and thoughts. “Yes, it is Tuesday (even if it’s Friday) but today we are going to do a Friday activity.” Goes along with *not* telling them they are wrong.

Walk in their shoes. Just as you do not want them to be sick, they don’t want this disease. Realize they are frustrated too, because they can’t do things or remember things like they used to.

eXercise. Go for a walk with your person with dementia. Or do chair exercises. Getting the blood flowing is good for everyone.

You are not alone. The Alzheimer’s Association has many resources for you. Our 24 hour helpline 1-800-272-3900, support groups, caregiving courses. Reach out.

Zzzz’s. Let them rest. This disease is exhausting. For both of you. You rest too.