Separated

My husband and I don’t live together.  

We’re not divorced.   We’re not mad at each other.  He is not traveling out of state.  My husband has Alzheimer’s Disease.  He is now living in a lock-down care facility at the Veterans Home.

Having him go into a care center was one of the most difficult decisions I’ve ever had to make.  The VA called saying they had an available bed.  Knowing how difficult it is to get into this facility, I had put my husband’s name on the list two years ago.  Still, I wasn’t prepared for the call.  

After discussing it with our children, his siblings, and my siblings, we were  all 100% on board of having him go.  I’m thankful for that.  If he was capable of making decisions, we all feel my husband would agree the Veterans Home is the best place for him to be, now.

But it’s still hard - very very hard - for us to be living apart.  When I ask the workers how he is doing, they say he is not sleeping at night.  Well imagine that.  I’m not either.  

Some well meaning friends and acquaintances tell me, “The Veterans home will give him better care than you were able to give him at home.”

My rebellious self thinks, it’s a great place, but better than ME? 

Do they know that I can tell exactly when he is hungry and when he needs to go to the bathroom?

Do they know I have it down to a science how to help him get dressed in the morning and (sometimes) undressed at night?

Do they know that the day before he went into the VA Home, we were in the mountains walking along a stream, holding hands, which we have been doing almost every day this summer?  

Do they know we snuggled on our couch practically every night watching clean mushy Hallmark movies?  

Hmmm.  But perhaps, on the other hand,  they know  that showers were becoming a disaster.   Maybe they know that I sometimes had to cut my husband out of his clothes, because that was the only way I could figure out how to get them off.

Perhaps they know, as well as I do, that things are getting tough, and would soon become more than I can handle.  

At night, I am lonely - very very lonely.  We’ve been married 50 years.  We celebrated our anniversary five days before he entered the VA home.  I grieve not having him next to me.

When I wake up, my first thought is Bob.

After I get my chores done, I take a 15 minute drive to visit him.  He’s shaved and dressed and sitting contently in the common room with the other guys.  

We go upstairs for little walks in the courtyard.  We watch the tortoise eat strawberries.   We sing, “Let Me Call You Sweetheart” and “Down by the Old Millstream”.  I ask him what his name is, and he usually doesn’t know.  When we go back inside, Lulu, the baby kangaroo is often there, jumping down the corridor in diapers. 

We take the elevator back down to the Alzheimer’s Unit.  On our way down, we hug and kiss. I tell him, “I love you.”  Before the elevator door opens, I wait for him to tell me he loves me, too.  On good days, he does.   

5 Secrets

5 Secrets

Here are 5 secrets that keep me going as a caregiver.   My husband has Alzheimer’s Disease and lives at home.

1.  Meds:  In the latter stages of Alzheimer’s disease, many Alzheimer’s patients become agitated and aggressive.  They also  experience changes in sleep patterns.  Thank you, Dr. P for prescribing Haloperidol in the morning, and 200 mg  of Seroquel  at night.  Otherwise we might be having punching fights by day (This didn’t happen, but it could have) and we would be knocking on doors in the dark at 4 A.M. (This did happen.)  I would not be able to handle my husband at home, if it were not for these two medications.

2.  Food, Exercise, Sleep:  It’s important for me to enjoy good health so I can take care of my husband.  Many caregivers end up dying before their loved one, due to stress and poor health caused by caregiving.  I try to eat healthy, thanks to the book Eat to Live by Joel Fuhrman.  It’s saving my life, I hope!  My husband and I  walk outside or at the mall daily.  It’s good for both of us.  We both sleep through the night now, thanks to the meds.  When my husband was waking up every hour at night, I was a zombie. 

3.  Support Groups:  I go to two.  It’s extremely therapeutic to share what I’m going through with those who understand.  In the groups, we can tell funny stories about our loved ones without people thinking we are making fun of them, or thinking that we are taking the disease too lightly.  We need to laugh, because it is such a horrific disease.  We also receive important information on all aspects of the disease.

4.  Outside Help:   Our daughter and my brother each take care of my husband one day every week.  Other family members, including his siblings, our children (including spouses), grandchildren,and my siblings, are also great to help out.  I haven’t been able to leave him home alone for the past four years.  I love having a break.  Everyone isn’t blessed to have a supportive family close by.    There are places, like Neighborhood House, where patients can spend the day doing activities, while caregivers have some time off.  The Alzheimer’s Association is a great resource for help. 

5.  Me Time:  To keep myself pulled together and sane during this challenging time, I try to do something fun every day.  For me, it’s quiet little things like reading, writing, quilting, knitting, crocheting, gazing at the stars in our hammock…  For others, it might be tennis, soccer, golf, drawing, painting…

Happy

 He Won't Even Know Me! 

I belong to three Alzheimer's Caregiver Support Groups.  One of them is an on-line group.  One of the entries this week was written by a daughter who is caring for her father.  She was ranting over  disappointment with her father's old friends, who never come to visit him.  Others chimed in with anger toward family members, pastors, and friends who are ignoring their dementia-suffering loved one.   

Wow, I thought.  These comments could have been directed at me, before my husband was diagnosed with Alzheimer's.  Was I good at visiting old friends, relatives, and neighbors who had Alzheimer's or   other illnesses?  Not really.  Why?

Here are a few reasons why perhaps we don't visit:

*  We are busy.  Yes, people are busy. We are busy with work, family, community, church and other important responsibilities.  

*  We want to remember the person as they were, and not as who they are now.  We can't bear to see  our loved-one doesn't remember the past and, most likely, doesn't remember who we are.  

*  We don't know if it's worth our time, since our loved one may not recognize us and won't even remember we visited five minutes after we leave.  

*  We are afraid.  We don't know what to say or how to act around a person with this disease.  We don't know if we will be recognized.  We don't know if our friend or loved one will say inappropriate or embarrassing things.  We don't know what to expect.

Now that I am on the other side, I realize it is my responsibility to help friends and loved ones feel comfortable visiting my husband.  

*  I need to tell them I know they are busy, but that they are welcome to drop by, even if is just for 5 minutes.

* I need to tell them that, even though my husband may not remember who they are, he will feel of their love and interest in him.  He probably won't remember they came after they leave, but he will experience great joy in the moments they are there visiting him. 

*  I need to tell them what to expect when they visit him.  Right now, where my husband is in the progression of this disease, it is important for family and friends to know that it is not a good idea to ask him questions.  He most likely won't know the answers.  He remembers very little about his past, which includes 5 minutes ago and 50 years ago.

So, if you can't ask him questions, what can you talk to him about?   You can tell him stories of things you did with him in the past.  You can tell him about your family or interesting things you are doing in your life.  You could tell him a funny story or a funny joke to make him laugh.  I love hearing him laugh.  My two main goals as a caregiver is to keep him safe and TO KEEP HIM HAPPY.  

*  I will try to keep family and friends updated, because there are constant changes they need to be aware of.  If I forget to give updates or instructions, I wouldn't mind at all if I were asked.

Thank you for your care and concern for us, and for reading my blog.

Sorry and Grateful

Sometimes I feel sorry for myself. 

I feel sorry for myself when:

I watch couples sharing in stimulating conversation.

I see twosomes off on an exciting adventure.

I very seldom have time alone.

I have to spend time searching for hidden things.

I have to get up in the middle of the night.

I think this is normal - feeling sorry. Sometimes it is difficult not to dwell on the negative aspects of having a loved one suffering with Alzheimer’s Disease. 

But what an extremely ungrateful person I would be if I thought about these negative feelings more than sometimes.  I still have so much to be thankful for.

I’m thankful:

Bob still asks me if I will marry him.

We have loving and caring family and friends who are always thinking, praying for and serving us.

Our past travels have taken us to magical places.

In days gone by, we have worked, played, laughed, cried, shared thoughts and feelings.

We can still hike, enjoy walks, hold hands, go to church, movies, plays, symphonies, family gatherings.  This won’t last forever, but when it ends, my memories will still be there.

He can walk, talk, pray, shave, feed himself, and shower.  When he no longer can, I hope I will still be thankful.

He still knows who I am.  When he can’t remember, I’ll still be thankful.  I’ll be thankful because I know he loves me, and he loves his family.  He has told us many times, verbally and in writing.    We will always love him.  No matter what this disease puts us through.

Burglars

“You haven’t blogged for awhile,” my sister said a couple of days ago.

“I know,” I replied.

  It is difficult for me to walk the fine line of showing respect and loyalty to the man I love so dearly, and sharing helpful information with others of what it is like living with a person with Alzheimer’s.

A few months ago I mentioned I would write about communication.   Here are a few thoughts, with others to be added in the future:

A typical behavior (confirmed by my support group) of one suffering with Alzheimer’s Disease is that they constantly feel like burglars are coming in and stealing their stuff.  Every day you could explain to them that they are forgetting where they put things, and that’s why they can’t find them.  Wrong choice!  This explanation makes no sense to them.  It even makes them angry that you would even consider this as a possibility. 

  

Instead, you jump, with two feet, into their world and to their way of thinking.   I first ask what is missing.  Sometimes my husband can tell me; sometimes he can’t.  When he can’t, I start naming the treasures he carries around in his pockets.  When we figure out the missing objects, I start looking for them.  It would be useless to ask  where he had them last or when he last saw them.  He can’t remember.    After we discover what is missing, I madly go through the house looking for them.

On a good day, it takes a minute or two because I’ve found them there before.  On an occastional bad day, it may take over an hour because they’re in a new hiding place.   So frustrating, but not his fault.    It’s the brain thief.  My husband is always happy when I find his things.   But the next day, we start all over.  The “goof balls” have come in and taken his stuff again.

On bad days, and even good days, we reward ourselves with healthy Banana- Chocolate Ice Cream.  Our son-in-law, a connoisseur of fine ice cream, doesn’t think it is proper calling this ice cream!  But we like it, and it satisfies our craving for sweets.

Banana Chocolate Ice Cream

(2 servings)

2 frozen bananas (Cut them in half before freezing)

2 heaping Tablespoons cocoa powder

½ cup vanilla almond milk

Place in blender until smooth and creamy.  (A heavy duty blender with a strong motor is best.)  You may need to stop the blender and stir things around a few times.

We always top it with a few sliced almonds, and chopped pecans or cashews.

Remember Who You Were

Remember Who You Were

“Remember who you are!”  I heard this hundreds of times throughout my adolescence as I left home for a date or hanging out with friends.  It was one of my dad’s favorite sayings.  He had such hope for keeping me always on the right track.

Today, I’d like to change it to: Remember who you (they) were.  I realized last week how important this is.

We moved to our condo almost a year and a half ago.  My husband and I felt a need to live closer to our daughter and some of my sisters.

Last week I finally got around to hanging some pictures.  I’m not sure if it was because I didn’t want to put nails in the beautifully painted walls, I felt insecure hanging pictures because my husband used to do it, I didn’t know which pictures I should hang, or if I am just plain lazy. 

I decided the study would be my first room to tackle.   A thought came thundering into my head as I contemplated which of our many pictures should be displayed in this room.  Why not have it a room dedicated to my husband?

 

I selected a few of the many plaques that have been piled on his desk for over a year to hang first.  My husband worked as an engineer for the federal government for thirty years.  The government loves plaques.  I also hung a framed flag that hung over the U.S. capitol on his birthday in 1997, given to him on the day of his retirement.

Also on the wall are an Al Rounds painting of the Salt Lake Temple where we were married, three paintings by our sons, as well as two Robert Duncan paintings which my husband picked out several years ago because they reminded him of his grandpa’s farm.  

On his desk I placed an illustration of my husband that our son drew for him on his 70^th birthday.  Circling his head are many of his favorite expressions.

It was an extremely therapeutic day for me as well as for my husband.  The plaques reminded me of how bright my husband was and how much he enjoyed his engineering career.   I need to remember that he once knew how to do complicated mathematical calculations, when now he sometimes has difficulty figuring out how to fix himself a bowl of cold cereal.  

My husband was surprised when I showed him the plaques illustrating some of his accomplishments.  As we looked at the painting of the temple, he was happy to hear we were married there forty-seven years ago.  Sometimes he forgets we are married.  He has proposed to me many times in the past year.    He loved seeing the pictures of his “grandpa’s" farm and the work of his artist sons.

Remember who you were.    Remember who they were.


I'd love you to comment on what you've done or what you are doing now to remember or help your loved one remember.

Thankful

Thankful...

I am grateful for family and friends who:

·      take my husband out to eat when I have other appointments.

·      call  or text asking how I am doing and then lovingly listen.

·      call and talk to my husband, not asking questions because they are too difficult to answer, but reminiscing old times.

·      do puzzles with him and kindly ignore when wrong pieces are put together.

·      bring dinner and visit with us.

·      come to family dinners and activities for socializing.

·      go to plays, ballet and concerts with us.

·      take my husband for a Slurpee or ice cream cone and help him buy flowers for me with a love note attached.

·      treat him with love and respect and don’t correct him when he says things that aren’t quite right.

·      think of us or pray for us.

I’m thankful for the many lovely years we’ve spent together.  I’m thankful for the many hours we spend together now walking or hiking, grocery shopping, cleaning the house, doing dishes, folding laundry, and watching TV, hand in hand.

I’m thankful that my husband is loving, gentle, appreciative, and kind to me.  I hope and pray this will continue because I know it doesn’t for everyone with Alzheimer’s.

The disease is progressing.  Life is getting a little more difficult.  But I know I can do hard things.  I know God is watching over and blessing us.