Thursday, February 7, 2013

What's in a Name?

Of course, the answer is everything.  What if your loved one forgets your name?  I  want the answer to be, celebrate because he still knows me.  Sorry, wrong answer.  My husband can't remember my name, at tomes.  It doesn't worry him, for which I am grateful.

The progression of the disease of Alzheimer's is cruel and ongoing.  I can choose to be bitter, or I can try to find a way to live with it.  Living with the disease and trying to help my husband be a productive member of the family, as long as he is able, has been my ongoing goal.  That has been the need he has expressed since the beginning of this journey.

My daughter, always says her name when she talks to him.  She says he hasn't known her name for a long time.  I have a hard time imagining me saying, "I'm Debbie" every time I talk to him,  Of course, I really couldn't imagine doing all this Alzheimer's Disease stuff either, so I will work on toughening up some and do what I need to do.

Please leave a commit or suggestions.  Stay well.  Thanks, Debbie

Wednesday, February 6, 2013


I was invited to speak about living with Alzheimer's Disease today.  I was honored that I had been invited to share our story.  I haven't added much here lately, but was as I said before, I am planning on faithfully making updates.

My husband's' condition is getting worse.  He sometimes forgets my name in the evening.  He seems to get more agitated.  He  does not want to go anywhere anymore.  I have slowed our schedule and my expectations some.  I haven't felt well lately, so it has been fairly okay with me to stay in. I'll try to get us to some short, fun outings soon. 
Stay well.  If you have suggestions, please share. Thanks, Debbie

Thursday, January 24, 2013

Long Time Past

I have been gone a while. After my husband got out of the hospital, I had a difficult time getting everything back to normal.  Okay, my life is a long way from normal, for sure, but who's is?  I'm hoping to spend time here again.
My husband is continuing to be more confused and having more problems with his memory.   He only wants to stay home, not go anywhere.  We had some of that before and I had to be creative to get him to go out again.  I seem to be okay with not having a social life right now.  I might need to get creative to get me out again.
So here we go.  Check back again for more updates on living life with Alzheimer's.

Monday, July 2, 2012

Strawberry Feta Salad

The lettuce in my garden is struggling because of the heat.  We planted the seeds last fall and they came up early this spring.  We had lettuce really early on, so we have enjoyed mixed lettuce salad for a while now.  Strawberries are a really good price right now.  I am price matching them at Walmart from the Aldi ads.    This isn't really a recipe, just a combination of ingredients.  We usually have this salad for Easter.  We use a poppy seed salad dressing.  We made a garlic dressing for this salad.  This is a favorite in our family.

Strawberry Feta Salad
Mixture of lettuce leaves - Spring mix - washed, patted dry and torn into small pieces
Mixture of fresh basil, parsley, and chives - washed and torn into small pieces
Strawberries, hulled and sliced
Feta Cheese sprinkled on top.

We probably won't have many salads left from this year's lettuce patch, but oh this was a great way to end the season.  This would make a great salad for the 4th of July BBQ.  

Saturday, June 30, 2012

Rosemary Onion Bread

I have a wonderful little garden outside my backdoor, my kitchen garden.  I have basil, thyme, rosemary, chives, lemongrass, parsley, lavender, dill, and sage.  I love stepping outside my door and snipping the herbs I am going to use in that days cooking.

Like most things in my life, it is a little haphazard and not planned out very well.  I like the randomness of it.  I like how it doesn't really need me to survive.  When I do dishes, I throw the rinse water out the backdoor.  When I water the other area of the garden, the water generally sweeps across, but otherwise I don't water it on purpose.  I weed when I go out to snip and see a stray weed.

I like to use herbs in my cooking, but especially my bread making.  I have several bread recipes using rosemary.  Here is one.  I love the smell and taste of the onion and the rosemary together.  I hope this becomes a favorite of yours too.  Please let me know if you enjoy it.

Bread Machine Rosemary and Onion Bread

1 cup plus 2 Tablespoons water
1 Tablespoons sugar
2 Tablespoons nonfat dry milk
1 1/2 Tablespoons olive oil
2 2/3 cups unbleached flour
1/3 cup stone ground whole wheat flour 
1 1/2 teaspoons salt
2 Tablespoons fresh chopped rosemary
1 small onion, chopped fine
2 teaspoons active dry yeast

Add ingredients according to bread machine instructions.
I use the dough setting on my machine.  Then I take the dough out and add a little flour if too sticky.
Shape into 1 oval shape loaf.  Place loaf on oiled baking sheet or stone.  Cover with plastic wrap and let rise until double in size about 40 minutes.  While loaf is rising, preheat oven to 400 degrees.  
I sprinkle flour on the loaf for a rustic finish.
Use a serrated knife to slash 2 or 3 times on the top of the loaf.
Bake bread until golden brown and loaves sound hollow when thumped, 25 to 35 minutes.  Makes a 1 1/2 pound loaf. 

Thursday, June 28, 2012

In a blink of an eye

Five years ago, even though we had a few mystery symptoms that were going on with my husband (we blamed it on stress and depression) my life was pretty easy going, until that moment, that "blink of an eye moment".   We were visiting friends, having an ordinary life, my husband grabbed his head and slid down the wall.  After he started talking nonsense and walked, dragging his leg, we rushed him into the hospital.  Within the next few months he was given a diagnosis of dementia.

It has taken trial and error, grieving, soul searching, friends, family, professionals and God's strength to guide me along our journey.  I learned that God has prepared me for the tasks ahead.  My professional training,  I am a special education teacher who works with students with emotionally disturbed students, works well when applied at home.  My students have a difficult time communicating wants and needs and sometimes use aggression to get what they need. It took me a while to understand that what I was trained for at work could help me at home.

All has changed from that moment and continues to change as his Alzheimer's takes away his functioning piece by piece.  I love this man, whom I have shared my life.  This disease does not change that.  I want him to be able to live out his life in dignity.

We recently had another blink of an eye moment.  We almost lost him to an infection.  He had a kidney infection, pneumonia, and now congestive heart failure.  He fought hard to survive and our family and friends battled along with him.  They arranged for meals at the hospital for me, took care of our pets, mowed our yard, washed my clothes, prayed, and helped get the house ready for his return.   

I wasn't ready to let him go and I don't think he was ready yet either.  While in the ICU, I played his favorite music, brought sunflowers from his garden and declared his room a "no cry zone".  Everyone was only allowed to celebrate his life with joy and laughter.

This last "blink of an eye" moment has again changed everything and I am again learning to adjust.  We had found our new normal and were comfortable in that.   This moment in time has moved me closer to the realities that are coming. 

He has lost a lot of his abilities due to his infection.  He may get some of them back, that does happen with dementia.  Now things are different again.      

I am determined that when the time comes, that "blink of an eye moment", I will do it bravely, do it without tears and again fight for his dignity.  In a disease that takes all, we are determined to give our all.  

Monday, June 25, 2012

Hospital 101

Before my husband began the Alzheimer's journey he was really healthy.  He rarely needed to see doctors.  Now, we are regulars.  Since I make the medical decisions, I worry a lot about my responsibility.  Should we have this procedure, should we wait?  Is it necessary?

I have found that if I have a standard way to deal with his health issues, I don't have to worry as much about what to do when something new develops.  Is it Alzheimer's, is it something else?  I don't assume the new development is due to the Alzheimer's .  We check out the symptoms and make sure there is not another cause.

Last week we started noticing more and more confusion and sleeping much of the day. He also had a fall that ended in stitches.  I asked the doctor to run several tests.  Often confusion is caused by urinary infections.  Nothing showed up and I was afraid that the disease was progressing.  Then he started running a temperature.  Again we could not find the cause when I took him to the emergency room.  They sent us home.  The next day the temperature was even higher.  This time he had symptoms that pointed to a kidney infection and pneumonia.  His blood pressure was really low and his kidney out-put was really low.

He was admitted to ICU.  I like to stay with him when he is admitted since he gets so confused.  We find that if someone stays with him they can help him make sense of what is going on, even if he doesn't totally make sense of things.  Also, he can be comforted by our familiarity.  He has been really sick and I feel really sad when I see him this way.  

We have a pretty strong support system, but since he is in ICU, only immediate family is allowed in.  My daughter has been coming in to sit with him while I go home and take care of my puppy and his cat and take showers and get cleaned up.

I know what the ending is for Alzheimer's Disease, but my goal is and always has been to keep him comfortable, productive and as safe as he can be.  So we are trying our best to get him through this.  Even though unpleasant and definitly not table conversation, I have spoken to my family about his wishes and what our plan will be if something major happens, so things will go smoothly at the end.

I hate the waiting and I dread the results.  Will they find something?  What if they can't take are of his new ailments or he doesn't respond to the treatments.

Due to the fever, medications, and change of routine,  he is terribly confused and agitated.  He looked at me the other night and said he thought Debbie was here.  I told him Debbie was here.  He seemed to be okay with that answer.

Here is some lessons I have learned from our numerous emergencies, procedures and hospital stays.  These work for me.  Of course, I am continuing to learn.

1.  Keep a current medication list in my purse.  Update as needed.
2.  Keep a cheat sheet of medical history in my purse as well as current symptoms or current notes.  I can add questions that were asked that I did not have answers to.  That way I can try to find the answers and add them to my cheat sheet.
3.  Keep a small note book in my purse to take notes of anything I want to ask the doctor or what he/she says.
4.  Grab the phone charger and stick in purse as I am getting ready to go to the hospital.  I try then, to continue to carry it in my purse so I should have it when needed.
5.  Have a Plan A and B in my head of what I would need to do about my dog and cat's care.
6.  Constant updates on the phone to friends and family makes my ear hurt.  I am grateful we have so many caring folk, but in the middle of crisis a plan to follow is helpful.  I ask one of my children to start the phone tree.  Facebook has been an asset.  I can just put his status up each day.  There are, of course web sites that you can post to so each friend or family member gets the same updates.  I envisioned I would use this as his disease progressed.

Having clean underwear has been a problem on the last 2 medical stays.  Somehow when things begin to get out of wack at home, I get behind on laundry.  This time I just stopped by the store and bought new ones when I went home to get our overnight stuff.  My daughter stays with him when I need to go home.  She also brings me meals.  This time because of the length of stay, my church helped set-up complimentary meals for me since I stay with him and help with his care.

None of this is easy, but it is part of the Alzheimer's journey.  I am a firm believer in making a plan and knowing as much as I can about the disease so I can make good decisions.  I also have a local support group that I learn a lot about how to prepare for what the future will bring.  In the middle of crisis, I have friends and family that I brainstorm with.    Of course, I pray and ask God to help guide my decisions and to give me as much wisdom as I need to get through this.

Currently my husband is on day 10 of a hospital stay.  He had a kidney infection and pneumonia.  He was in ICU 4 days.  Normally, any illness will affect the dementia.  Sometimes they get back some of that functioning.  He is doing pretty well.  Of course, we are hoping for a full recovery, but we will shall see.

Please share how you get through the hospital stays.  Thanks, Debbie