The Alzheimer's Journey, Still

 It has been over 15 years since Bob and I began our journey of living with Alzheimer’s Disease.  Bob is now in the advanced stage of it.  He can no longer walk, talk, dress or feed himself.

I am writing this entry with the hope of aiding others in their journey through this devastating disease.  Bob was always one to jump in to help others in need.  Hopefully, I am continuing this legacy.

Most people who suffer with some sort of dementia were bright and contributing members of society.  Bob held  a master’s degree in civil engineering.  He was director of environmental management at Hill Air Force Base, with over 17,000 employees under his direction.   Before Alzheimer’s, he was always engaged in productive activity.  He was also a loving husband, caring dad, and playful grandpa.  Slowly, his intelligence, memory, talents and engaging personality were taken away from him.  Life became extremely difficult for him and for our family.

Here are four things that helped Bob and me along this care-taking journey:

1. Learn as much as you can about this disease through: 

        Reading Materials - In the beginning I read many books about Alzheimer’s written by doctors, caregivers, and even people who were experiencing this disease.  I also obtained information on line from the Alzheimer’s Association and other sites.  

Documentaries - Charlie Rose and Maria Shriver are two I found helpful, as well as many others I found on the internet, by way of YouTube.

Support Groups - Contact local Alzheimer’s Association for times and locations.  My support groups helped me immensely.  When Bob ran away in the middle of the night, they gave me an excellent solution, so it wouldn’t happen again.  They suggested installing a door knob backwards, so I could lock us in our bedroom at night.  ( Obviously, I hid the key!)  It worked wonderfully in keeping Bob safe.

2.  As the disease progresses, ask/accept support from family and friends.    I couldn’t have kept Bob home for as long as I did without the support of our children, grandchildren and our siblings and their spouses.   They gave me weekly mornings off from caring for Bob, brought meals, helped us move, helped me with behavioral emergencies (caused by the disease), listened to me when I needed to talk, and were my best cheerleaders.

3.  Medications saved us.  Further along the Alzheimer’s journey, anxiety, anger and impulsive behavior become a big problem.  When Bob started jumping out of our moving car, I knew I needed something to calm him down.  Our primary care doctor gave us a prescription that greatly helped.

4.  Support Beyond Family - Six years ago, Bob’s care became more than I and my family could handle.  It was becoming impossible to shower him.  He was experiencing incontinence, and not wanting help with it.  Thankfully, an opening at the Salt Lake William E. Christofferson Veterans Home became available, at exactly the right time.  I can’t say enough about the excellent and loving care he is receiving there.  

I have friends who have hired full-time care in their homes for their loved ones.  Both of these solutions are good, but also expensive.  You may have enough family and/or friends who can help full time on a rotating basis.  Keep in mind that down the road, your loved one will likely be confined to a wheel chair, which applies to Bob now.  Many homes, mine included, are not wheel chair friendly.  

When Bob became a resident at the VA,  I can’t express in words how important it was for him to have frequent family visits.  In the first three years, Bob was able to interact with us.  I loved hearing him tell me he loved me.  

Now, when I visit him, he usually doesn’t acknowledge my presence at all.  When I come, he is sitting at a table in his wheelchair with his head down and eyes closed.  I usually come at meal time, so that I can feed him his pureed meals.  After he eats, I hold his hands, give him a back rub, and stroke his cheeks. When I leave, I always kiss his forehead and tell him I love him.  I want him to feel nurtured and loved by me, at least for a few minutes.  

 I feel sad that some of the men in the memory care unit, with Bob, hardly ever get visitors.  When I go, I love chatting with residents who are still able to communicate.  

Some Alzheimer’s journeys are short.  Others, like Bobs, are lengthy.  Either way, the journey is difficult.  I can’t end without saying how much my faith and hope in God has given me peace  that everything  is and will be all right.  

Love Love Love

Bob with his sister, Kathleen

I don’t visit Bob at the Veterans Home because he recognizes me and is happy to see me.  I have no idea if he recognizes me.  He hasn’t said my name for at least two years and hasn’t known we are married for five.  He can’t carry on any sort of conversation, so I don’t visit for stimulating verbal communication. 

Sometimes he gives me a little smile when i greet him face to face.   Other times he doesn’t seem to care that I’m there.  When I say, “I love you, Bob,” often he doesn’t react at all.  Occasionally  he answers, “Good.”  A couple of weeks ago he answered, “I know.” A month ago he surprised me by haltingly saying, “I love you, too.” Adding the “too” seemed quite significant for his failing brain.  In the past two weeks when I’ve told him I love him, he has repeated it back only once in slurred, almost unrecognizable speech.

I don’t stay away from visiting Bob because he doesn’t remember who I am and the significant and wonderful role he has had in my life.  The reason I visit  Bob often - every day or every other day - is because he is still a part of me.  We’ve been married for almost 53 years.  I love when we hug in the elevator and he tries to lift me off my feet.  I love bringing him home at least once a week.  We sit close on the couch, hold hands and I watch a movie.  He hasn’t looked at our large TV screen for years.  He also doesn’t seem to listen to the movie either.  He doesn’t react at all to what is happening on the screen.  But we are together, alone, holding hands, connecting, and he seems content.  

Another important reason I visit Bob at the VA often is because I want him to feel nurtured and loved, if only for just a few minutes.  The nurses and CNAs at the Veterans Home are wonderful.  But they don’t have time to give individual “nurturing” attention to each of the 22 men living in the Memory Care Unit.  That is why I think it is important for family and loved ones to visit Alzheimer’s patients at care centers, even if they don’t remember who they are.

Bob can’t express to me in words what makes him feel loved and nurtured.  But, hopefully I have figured out his needs correctly.  I know he loves holding hands when we walk down the hall or sit on a sofa.   He also responds positively to hugs  as well as back, arm and neck rubs.  When I tuck him in at night, after helping the CNAs  ready him for bed, I gently rub his face.  Then I gently kiss across his forehead, both cheeks and chin.  He is completely freaked out if I kiss him on the lips, so I don’t do that.  Before I leave, I pray with him.  I love how peaceful he looks when I leave.

Bob isn’t going to remember one minute afterwards that I rubbed his back, rubbed his face, gave him hugs and kisses and held his hand.  But for a few minutes, in the moment, I want him to feel cherished

It is important to figure out how to nurture a loved one.   A spouse of one of the men living at the VA with Bob told me her husband doesn’t want her to touch him.  It isn’t that he didn’t or doesn’t love her.  It’s just that some Alzheimer’s patients don’t want to be touched.  So, she talks to him a lot, and he seems to like that.

I am grateful that members of our family visit Bob in person or by phone to give him an abundance of love.  Our two daughters and Bob’s two sisters, who live close by, visit him with their families.  They hold his hand, talk to him about old times, read him stories, and play their musical instruments for him.  His twin brother calls him once a week from Washington, so he is blessed by the sound of his voice..  Whenever our out-of-town children come into town, they spend as much time as they can showing their affection for him.

I love that they have a Namaste Room at the VA.  At least once a week, Bob takes his turn for Namaste, which means in Hindu, "I bow to the divine in you.”  Brook takes Bob into the  cozily decorated Namaste  room.  With her beautiful lilting voice, she  coaxes him to sit down in a cushy recliner.  She turns on music.  She places a lollipop in his mouth.  We softly rub his hands with luscious smelling lavender lotion.  She tells me sometimes he falls asleep and she lets him stay until he wakes up.  When I am fortunate to be there for the Namaste, we  leave  45 minutes later with John Denver’s song, You Fill Up My Senses, swirling in my head.  Every single one of his senses is gently nourished there.

When I am with Bob, we don’t live in the past.  We don’t plan or speak of the future.  We live for the moment, and the moment  can be very very sweet.

What's Troubling You?

My husband has Alzheimer’s Disease.  He has been cursed with this terrible disease for many years.  I started noticing changes in him almost 11 years ago, but I’m certain he hid it from me much longer than that.   

He has lived in the Veteran’s Home Memory Unit for a year now.  I cared for him at home for as long as I could.  Then, sadly,  it became too much for me.  

The first several months I visited him every single day.  Lately it’s been every other day, at which I sometimes feel guilty.  I want to cherish our time together, but family and friends are important, too.

Bob no longer understands my questions: 

“What is your name?”

 “What is my name?” 

He can no longer feed himself.  Every now and then he uses his fork to take a couple of bites.  But usually, he just stares at his food until the CNAs or I feed him.

He can’t dress himself.  He can’t finish a sentence.  He can’t brush his teeth, comb his hair, or shave.  

He can still walk without falling.  He can give hugs - really big hugs… and he can smile for a picture.  He also can sing along to Happy Birthday, which our children and grandchildren cherish.

When I am with him I say over and over, “I love you, Bob.  I love you, Sweetheart.  I love you, Darling.”   For the past couple of weeks, he doesn’t repeat these words.  This is difficult, very very difficult for me.

I know I’m not the only one in the world with difficulties.  

What is troubling you today, this week, this month, this year?

This week:

I delighted in watching grandchildren play, the fragrance of late summer roses and lavender, and gazing at the stars in my patio hammock.  I delighted in my date with Bob - holding hands on a Millcreek Canyon boardwalk next to a stream.  I delighted in interacting with other residents in the VA, especially the ones who don't get visitors.

I feasted on peaches, raspberries, almonds, pecans, cucumbers, beans and, of course, two daily pieces of dark chocolate.

I worked on my granddaughter’s very pink birthday quilt.  I stayed up until 1 A.M almost every night reading My Bondage and My Freedom by Frederick Douglass, The Longevity Plan by Dr. John Day, scriptures, and 6 other books.  I realized I was reading or listening to 9 different books at a time, which is ridiculous 

I texted, talked with, and hung out with family and friends.   I spent time alone.  I'm an introvert.  

I spent time on my knees.  

What is making you happy today?

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.