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

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.

• Shawn 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. 

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. 

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.