Tuesday, August 26, 2014

Caregiving the Final Year

I had discussed the options of nursing home care and in-home Hospice care with a counselor at the Alzheimer's Association. I decided on Hospice. My husband could stay at home and since I could resign from my jobs substituting in public schools it was THE solution, rather than a nursing home. It was most comforting to have hubby at our home, as his decline was very rapid as chronicled on this blog.

NOT WALKING. A year ago hubby woke up not being able to walk. He hadn't fallen and I thought it was that arthritis and not a broken leg. A knee brace had been used for a time.  However, in hindsight, his not walking was all about dementia and the plaques and tangles taking over another part of the brain. Our chiropractor gave him increased mobility, but in the end that part of his brain that enabled walking didn't work.

I realize that not everyone is able to keep the loved one at home, but someone has to live with them.  Some dementia patients are difficult to handle because they are angry and their filters for normal social behavior are missing.  Or some wander away from home.  Some turn the stove on and forget they did that and risk burning the house down. My husband didn't cook in the past few years and didn't wander. My husband relished being "normal" and I treated him normally as my loving husband, learning to talk simply to him and always saying "I love you" at least once a day. It worked for us. He had a good disposition and just loved watching TV and enjoying his DVD collection. We both loved our home. I would keep busy, but not really concentrate on the TV he was watching.

Hubby in hospital bed at left;
dog Ziggy on my twin bed. 
HOSPICE decision. We took out the king-sized bed in the master bedroom, the Hospice hospital bed was moved in and I slept by hubby in a twin bed pictured. Our dog Ziggy moved between our beds. I learned from Hospice that hospital gowns at home are made by cutting the back of a T-shirt up the middle but not through the top ribbing so they would stay on; this made it easy to change their top. By this time my husband was bedridden and using adult diapers.

Handy dining room cart moved to bedroom

TV, bomb box and cart for supplies
Hospice needs a station to do their work. I used a cart from the dining area and moved it to our bedroom. The "Depends" type products were stored on a chest nearby. Near the end of Hospice, a Home Health Care Aid came every day and I actually learned to change my husband's diapers and he never got a rash. The nurse who came when he died noted that he had been well cared for. He was loved and made to feel normal.

My dear husband knew he was dying and told Kenny he was ready to stay in bed -- he had had enough of moving from the Geri chair to the bed. He would tell Kenny things that he didn't tell me, because he needed to feel normal around me I think. Kenny was his buddy--not a volunteer caregiver in my husband's mind.

I believe that Hospice in the home is a great way to take care of our loved ones. They are most comfortable at home. Look at this wheel with all the services Hospice provides.

Support groups and other help. An Alzheimer's Association support group is most helpful. We caregivers need support. We HAVE to get respite. People were always with my husband when Hospice was called in. I went to the grocery store when the Home Health Care Aid came, and went to church when someone was here. For months I had been contracted to teach three classes and someone was with my hubby for many hours those three days. I had to ask for that help from friends.

When hubby went downhill I started taking 10 MG of the antidepressant Paxil that I will get weaned off of hopefully when I see my doctor in September. I tried to stop because it is non-habit forming, but that was a mistake and I needed them to maintain my hormone levels and an acceptable mood. Then l read where you need to get off Paxil slowly. I have had two counseling sessions--one with the Alzheimer's Association and one with Hospice. Neither of these appointments cost me a dime. Both counselors also advised me to taper off of Paxil slowly.

TAKING CARE OF ME.  Many caregivers pass away before their loved one dies because of the stress perhaps--maybe 60% I have read somewhere. The grief added to years of caregiving can take a heavy toll. I am finally taking care of me. I went to the dentist this week and before my hubby died I had someone at the house so I could keep my mammogram appointment that had been scheduled for a long time. I am going to Weight Watchers again--glad that I didn't gain all the weight back that I lost in 2012. I think some of my gaining back weight was that ice cream that hubby and I enjoyed together--one of the last things he would eat. I have not had ice cream since he died--it would cause a grief burst to have ice cream.

I am both relieved and grieving and need more sleep--even dog Ziggy needs more sleep.  I am trying to get out and about and do things that bring joy to my life. I am discovering what works for me, glad that I can still do things.

I am going to a grief support group. Hospice has them, but I am going to a thirteen-week grief group with my friend Sally at her church. We are using Grief Share: Your Journey From Mourning to Joy, published by Church Initiative, P. O. Box 1739, Wake Forest, NC 27588. It has a manual with homework and also a video that the facilitators play in class. Tonight is my second session.

Today I go vote and I am less prepared to vote than I have been in the past. I started to watch the Emmy's last night and realized that I did not know these TV programs up for nomination.

THIS BLOG WILL CONTINUE.  Stay tuned. I am writing a seminary counseling dissertation on dementia caregiving and then finding a publisher for the popular version of that manuscript.

You have turned my mourning into joyful dancing.
You have taken away my clothes of mourning 
and clothed me with joy,
that I might sing praises to you 
and not be silent.
O LORD my God,
I will give you thanks forever. 
Psalm 30:11-12 New Living Translation

Tuesday, August 19, 2014

Book Review: The Sun Still Rises by Shawn Doyle

I had seen Shawn at a gathering in December of 2012 and he gave me a piece of jewelry that had been his wife's--very special simple act. His wife Cindy had passed away unexpectedly seven months earlier.  His book, The Sun Still Rises: Surviving and Thriving After Grief and Loss, is a splendid guide for the necessary journey for my widowhood.

Shawn Doyle is an author and motivational speaker who thoughtfully sent me his book when it came out last week.  Spread the word, he said, and I am glad to do that because it has so much food for thought and insight and is so timely for me.

Doyle covers the myths about bereavement that society puts on us and critiques those expectations. I thought about one of those when publicly I was seen rapping in a street fair that I wrote about recently on this blog. I wondered what would people think. Yet I knew in my heart that my husband would want me to go on and bring smiles to people when I rap. As dementia ravaged my husband's brain he tried to act normal and he would want me to go on when he was gone.

Other myths Doyle dispels include that there is a time frame for grief and that all family members will be helpful. He points out that the death after a sudden illness is not the same as a prolonged illness. Certainly this is the case with my two late husbands. I experienced shock the first time after the heart attack and acceptance the second time because I saw my husband go downhill and know now that his soul is with our LORD waiting for the bodily resurrection when Christ returns.

One morning, June 23, 2014, to be exact, the sun rose when the every four hours alarm rang at 6:30 am. I awoke in my twin bed by my husband's hospital bed and I soon discovered that husband was dead as I recounted in PRECIOUS LAST DAYS on this blog, a post that has had over 300 views. I am angry at dementia, but not at the LORD's timing in taking my husband to be with Him when He did. I finally became comfortable with caregiving as I have written on this blog, but I now need to begin a whole new chapter--grieving. I am not so comfortable being single and grieving as of yet.  Shawn's insights are helping me.

But it is not just GRIEVING, where I could get stuck, but I could get stuck NOT forging of a new life. "You will eventually be OK" writes Doyle assuredly (p. 48) and you CAN reinvent your life. Hmm, my life now includes getting back to my counseling dissertation on caregiving and continuing to write this blog. Will my grieving continue because of writing this dissertation and writing this blog? I ask myself as I read this carefully crafted book.

Here are some gems from the book.
  • Sawn advises to not have toxic people in your life. 
  • I choose how I think and I choose my attitude (p. 59) he writes. 
  • Life is so short and precious that I'm not going to waste my life sitting around being miserable, mean, and sad. . . I choose to heal, honor the past, but embrace the present (pp.60-61). 
  • Grief is not only emotionally draining, but also takes physical tolls on the body. We have to take care of ourselves. Shawn went to Weight Watchers and I now have the time to go back to Weight Watchers and have been there for several weeks slowly losing almost five pounds.
  • Get involved with others and give back to others. 
  • Decisions are more difficult when you are grieving. Listen to your heart, but also have advisers.
  • The feelings of grief can include numbness, anger, distraction, nightmares, impulsiveness, special day blues, jealousy, lack of direction, lack of optimism, depression, personality changes. My first special day, July 4th, saw two people backing out on being with me and it was hard. I haven't had nightmares or jealousy. I admit to a bit of impulsive spending, numbness, anger and distraction. 
In chapter seven Doyle lists 12 rules of others and how to break those rules. He writes:
My advice to you on this rule is simply be yourself and don't worry about how you are supposed to or not supposed to act. If people want to misinterpret your actions as being inappropriate then that is their problem. (p. 118)
Shawn concludes: Every day the sun still rises. You can either turn and face it, or hide in the dark. The sun is better for you, trust me. (p. 170)

I want to add to this review that the SON rose from the dead so that I may have new life on this earth because I believe in Him and eternal life in Heaven. Christ said in the beatitudes God blesses those who mourn,  for they will be comforted (Matthew 5:4 NLT). While Shawn is well read with many helpful quotes and excellent advice, his book is mainly for his secular readers as he is a popular motivational speaker. However he does touch on spirituality briefly.

But if you are in grief, don't miss this book.  It is a HUGE help 
with freeing suggestions 
and well-crafted, clear insight. 
Thanks, Shawn, for this gift. 

Tuesday, August 12, 2014

Celebrating Being Old

The six weeks of Hospice care for my husband before his death on June 23rd saw my husband aging each day--looking older than his 76 years. 

A birthday was coming up for me also, and my husband died two days before I turned seventy. I just seem to never celebrate those decades appropriately and this year my husband had died and couldn't celebrate with me. 

When I was a widow the first time and turned 50, the gentleman I was dating didn't get it right. Then I thought that when I turned 60 I should celebrate at a Plant City tea room because my husband was so busy working. This was before dementia and I didn't know our friends Sally and Jake. The tea room event never was pulled off even though I hinted to friends.  

However, Sally got this decade birthday right as she planned a 70th b.d. luncheon at her home. It was so lovely. What a thoughtful friend Sally is! The guests that came brought two cards, as it turned out--a birthday card and a sympathy card. 

I am at the head of the table. 

That day Jake was at the Senior Center, and although he had been going there with my husband, he became accustomed to going there by himself as we all saw hubby going downhill. Six weeks later  Jake asked, "So did your husband actually die?" They were such good buddies. Life goes on even if memories fade. Part of my grief is that Jake doesn't have his buddy. 

I started a Pinterest board on aging.* Here are some pins you might enjoy.

We should take the best of every age.  Hey, folks, I rap. I plan to write more raps and get YouTube figured out.  I am working on an Ed.D. in counseling. 

Have a reason to laugh.

Laugh at our memory.

Laugh at our eyesight.

Laugh at our teeth. 

But above all, be spontaneous, creative and have fun.

* Click on the bottom of this blog (after the July 16 post) for Follow Me on Pinterest

Tuesday, August 5, 2014

Guess What Happened!!!!!!

Last Friday night, in downtown Lakeland, I volunteered to be at our Toastmasters booth, the first time I could do this.  I talked with passersby's on the closed-off street about Toastmasters International and the local clubs. I told some that I have confidence to speak as a result of Toastmasters and, in fact, at age 70, I even rap!

Across the way from us was a musical group, the John Rhey Band.

I had the nerve to tell John Rhey himself that I am MC AC The Rap Lady. Could the band accompany me while I spit a rap, I wanted to know. It happened. A crowd gathered and I just kept on rapping, not afraid.

In the next twenty-four hours the word spread about this widow on a reprieve from her bereavement. Pictures went on Facebook and John Rhey and myself befriended each other on Facebook.  I promised to pray for the band's career and his upcoming CD.  He promised to pray for this crazy widow.

Now I am hoping to get ten raps up on my YouTube channel in the fall. Go there to subscribe and when a rap is produced for YouTube it will come to your email. There are three videos up now.

How did I get into rapping? When I wrote my book, Getting Off the Niceness Treadmill, I put a poem about social media in that book. I started saying this poem in middle school and high school and the students told me it was a rap. It caught on with the students who even ask for my autograph now. My rapping makes life easier and I even put smiles on people's faces when I rap for them apart from school.

A student made this for me. 

MC AC The Rap Lady
 on YouTube
who is looking forward to substituting 
again in a few weeks. 

Tuesday, July 29, 2014

Grief Is Complicated

Prolific author Anne Lamott muses about life, its meaning and people-pleasing. She gets it. She has forged a life as a writer. I am still trying to forge a life as a recent widow for the second time.

Here are my musings about my husband's  death from mixed dementia that has jarred me into a new reality.

We feel entitled
It’s all so simple
We spend to have
We collect people
To not feel lonely
We plan and expect
We think we have life all figured out.

Then life throws us a curve ball
Dementia strikes
Demands multiply
The loved one dies
But does not die alone
We are so glad to have
Those precious last moments,
They leave us with
That ever-present
Complicated grief.

It is we who are now alone
Our grief is complicated
No longer are we entitled
To our loved one’s presence
To that special companionship
Things have little meaning
Grief is all the meaning.

But we are entitled
To forge a new life
Rearrange the furniture
Get out of the lonely house
To be with others
But it’s not so simple
In time maybe
It won’t be so complicated.

Sunday, July 20, 2014

A Dog Grieves Too

Ziggy is getting more spoiled.

Ziggy wants to be by my side. He used to always be by my husband's side. He objects if I put curlers in my hair because he thinks this means I will be leaving the house. He has studied me and doesn't like those curlers. Come to think of it, my late husband didn't like me in curlers either.

Ziggy sleeps with me in a twin bed whereas he used to sleep with hubby and I in a king-sized bed before the hospital bed came into the bedroom.

Ziggy needs a little variety in his doggy life, I thought. He has been outside in the fenced backyard for years while I took care of my husband. He has yet to go on a walk with me. He doesn't own a harness and a leash to walk me with. It seems to me that dogs walk their owners.

So I needed to get out of the house. We went to Pet Smart and for the first time Ziggy got to go in a store. He peed there by a shelf and I pointed this out to an employee.

His vocabulary includes the C A T word. and we went to look at the kitties and cats at Pet Smart. No match. As a matter of fact if you say "cat", Ziggy will want to go out to the backyard and chase that cat.

From an excellent selection at Plant City's Pet Smart,  I bought us two items--the harness and the leash.

He took very well to the harness and the leash and we walked around a small retention pond on the concrete path. There was another dog there walking its owner and Ziggy realized this is just what happens. We passed some ducks and he left them alone. He trudged on until we found my car.

Widows have to forge a new life also to deal with the reality of no longer being a couple. Meanwhile Ziggy is snoring on the floor by me. So glad I have Ziggy and I guess that is why I am spoiling him now. Ziggy is part of my therapy.

Wednesday, July 16, 2014

Marianne About Her Life and Her Early Onset Alzheimer's

She has had Early Onset Alzheimer’s for several years, but still drives to familiar places. I met Marianne in a writing class and we decided to have lunch at Saxby’s by her home She consented to let me interview her at her home because there was too much noise at the restaurant she said. After the lunch, we drove our two cars to her charming home. She shares this home with her working younger second husband. In the garden a dozen or so trolls from Holland add color. Decorations hang from her fragrant camphor tree in the middle of the front yard.

Inside the home I met her four-pound poodle appropriately named “Peanut”. Marianne collects seashells, and giraffe figurines. Her abstract paintings done in an Alzheimer’s painting class adorn the walls. After this tour of her lovely home and gardens, we sat down for the interview and I was quickly impressed with her life and her total acceptance of her dementia and all the ramifications.

Carol:  Tell me about your charming accent.
Marianne: I actually speak four languages-- English, Dutch, Spanish and French. I can understand German as my first husband worked on computers in Germany.
Carol:  Where exactly were you born?
Marianne: Aruba, but my family background is Dutch. Aruba is officially one constituent of the Kingdom of the Netherlands, which appoints a governor for six years.
Carol: How did you get to Aruba then from Holland or the Netherlands? And to America?
Marianne: After WW II my parents moved to the island of Aruba—one at a time—my dad first for three years until he could send for my mom and marry her there in Aruba. Letters sailed from Holland to Aruba over the ocean while they courted. After three years dad sent for mom who boarded a ship to marry in this Dutch West Indies country. I am the oldest of their children. At the age of nineteen I married an American and we moved to America where I now have a green card. My parents and three siblings moved back to Holland when my dad retired where my youngest sister finished her high school education. I am able to visit them from time to time.
Carol: In brief what has your life been like in America?
Marianne: I miscarried twins my first marriage and eventually after nineteen years we grew apart; I became strong and initiated the divorce. My career has been as a LPN nurse. Then I met my second husband, six years younger than I am, and he had a two-year-old daughter that I raised as my own. Today she is the daughter I never had and she lives in Colorado Springs.
Carol: Did anyone in your family have dementia?
Marianne: My grandma on my father’s side may have had Alzheimer’s, but no one knows for sure.
Carol: Did your husband discover the memory issues?
Marianne: Actually no. When we lived in Pennsylvania,  I did insurance physicals. My employer here in Florida actually discovered my Alzheimer’s. I was working in a Florida nursing home where they do have an Alzheimer’s wing, and very aware of the problems of those senior citizens. Somehow I had difficulty distributing the medicine with a cart for thirty patients. I didn’t remember who had what medicine. My supervisors noticed my problems. So it was that the facility doctor gave me a prescription that said I shouldn’t work. I did try home health care for a while after that. I did not work at all in 2012 and last year in 2013 I qualified for disability.

One of Marianne's Favorite Plaques
Carol: Tell me about driving.
Marianne: I drive to familiar places and use a GPS in case I need to punch go home. I still cook, clean and buy groceries, but I have to have a grocery list. I remember being at a clubhouse meeting two years ago and not being able to find my seat with my husband until he came to get me. I had that "lost look". If I am home I am okay. I like home. I found this plaque and it reminded me of Pennsylvania when we were just 45 minutes away from that plane that went down in September of 2011.

Carol: You are so knowledgeable about your Early Onset Alzheimer’s. I understand you have a girlfriend who also has it and you discuss it together.
Marianne: Yes—she is my dear friend and we talk Alzheimer’s together—I study it a lot. We want to be in the same room in a nursing home if we need to go there. Her mom also had Early Onset Alzheimer’s.
Carol: You are writing many things from the past while you have that memory in the class we are taking. How does your short-term memory hinder you now?
Marianne: At this point sometimes I just don’t remember that I repeat myself.

Carol: What message do you want people to know?
Marianne: Communicate, people, while you can! I am done with lack of communication. I want my loved ones to call. I want my sister to call me. My brother from Holland does call. I enjoy my daughter calling. People can and do talk with me about Early Onset Alzheimer’s.

Carol: Yes, I learned with my husband that loving emotions do last. They want people contact. I have to say, Marianne, that you are an awesome spokesperson and an inspiration to others. Did it upset you to find out about your diagnosis?

Marianne: I had two 45-minute crying spells about a year apart, and that was it. Now I am living my life.

Carol: What activities do you enjoy now?
Marianne: I paint.  [She showed me the bedroom where she does this—her studio.] Many Saturdays my husband and I go to the beach. On Fridays I volunteer at Compassionate House distributing food and clothing. My husband and I are taking a one-week missions trip to Guatemala with our church group in August. I will be working with the babies there. In February we went to Aruba for two weeks. We visited Holland. We still camp and we enjoy our church. I agree with this sign I had to buy. It grabbed me when I saw it.

Around home is where your journey begins the sign reads:

Carol: Have you and your husband been realistic about the course of this disease?

Marianne: Well, I got a bracelet that identifies me in case I wander. I have charms on it and my husband made it so I cannot remove it. He has one as well identifying him as a caregiver.  And, we have all of our legal paper work done and we are not afraid to talk about this disease.

This interview inspired our whole writers’ group. Marianne plans to be around, folks, and continue living her life. We all love you, Marianne.