My Turn to Give Respite

I had respite when my husband was alive as I shared on this blog. Often I had to ask for help--but not always. Once my sister-in-law took me on a cruise while my late husband went to stay with his son. Near the end of his life, my husband could not go to church and I had someone stay at the house so I could go to worship.

Caregiving is often a 24/7 job. I found this with my new friend in Huntsville, Sally. Several years ago Sally's mother Evelyn came to live with Sally and Bob, and gradually this 99 year old mother developed dementia (as we all may should we live that long).

Sally and her husband Bob need to be with her mother Evelyn constantly. Evelyn can't hear well and has glaucoma and macular degeneration.. She walks with a cane because of her hip and at her advanced age, a hip replacement is out of the question.  In addition, as can be expected, she has developed dementia, but doesn't know it.

Recently I went to Sally's house to meet her lovely mother Evelyn. Sally showed me the tub where her mother gets an aided bath with a home health care aid that Sally hires. I was impressed at how this bath routine worked and didn't know about the long shower chair. Evelyn uses Depends on her own, and is able to dress herself with the clothes that Sally puts out.

When Evelyn is in bed and needs help, she can press a button Bob Bob installed on her bed. The button rings a wireless doorbell out in the hall that can be heard through the whole house. Bob or Sally can then go and help her.


How do you test for dementia? The doctor can ask the care receiver as happened with my husband in 2008, or the caregiver can answer questions about their loved one.

But the test for Sally was not needed. She was stressed to the max. She needed respite. I contacted her pastor and others at her church about help for her. The wheels were put in motion. Sally also started brainstorming about people who could help including a young person she could hire. Aging Care has suggestions also HERE. 

Meanwhile I provided respite on Sunday, November 15. It was my time to help. I did not go to my Huntsville church but would have my church with Evelyn (hymns and prayer).  Sally and Bob could get out to their church together --Sunday School, worship and out to lunch.  This retired couple deserved this respite and a date together. Sally had it all arranged--the usual breakfast was set out for her mother and a delicious ham was warming in the oven. They left for church about 9 am.

Evelyn came out all dressed and chipper. I reminded her that I am her new friend Carol. She had buried one husband and I told her I had buried two husbands. She quipped:

You are pretty hard of husbands

aren't you!

She also said that her hip was bad, but she needed to keep it because it was attached to the rest of her body. Delightful lady! She said she couldn't hear well or see well.

After lunch of corn, ham, squash and a banana, she occupied herself with a large Word Search puzzle, taking great pride in what she was doing. We did not watch TV, but I enjoyed maintaining the fire which we both watched. 

About 2 pm Sally and Bob returned and Evelyn showed Bob her progress on the puzzle. 

But there is more to the story and Sally was brave enough to tell me that Sunday--something I hadn't noticed.  

I had had Sally over to my apartment last summer with some of her friends that had been praying for me in my caregiving journey. I didn't notice her hands. I didn't notice her hands at the Alzheimer's Association Conference recently which her husband insisted she attend while he watched his mother-in-law. That day, I had just noticed her tears and the stress she feels being an 24/7 caregiver at the time in her life when she and Bob should be enjoying their retirement. She had characteristically bent her elbows and folded her hands in front of her like a speaker would do. Remarkable woman and remarkable smile. 

In 2001 Bob and Sally had planned a trip to Maui, Hawaii in conjunction with a test connected with Bob’s work.  Bob was delayed at a test at White Sands so Sally went on ahead alone to wait.  She became sick and eventually went into septic shock.  She went to a "doc in the box" who treated her for nausea when she asked for antibiotics.  The next day he said he couldn’t help her and called an ambulance to take to the hospital emergency room as she could no longer drive.  Bob only found out when he was paged in the LA airport and told he needed to get to the hospital as soon as possible. The first three days they could not tell Bob whether she was going to survive or not.  The actual message was, “She is hanging over a cliff and we are reaching for her but we don’t have a hold yet.” She was in the hospital for five weeks with nineteen days in the ICU.  Septic shock causes the capillaries to shut down.  That affects the lungs and extremities the most.  She was put on 100% oxygen to keep her alive which is not a good thing for long periods of time because it turns the lungs to “leather” and will eventually kill you.   While she eventually began to improve, her fingers and toes turned black. She had to have all her fingers beyond the first knuckle surgically removed except for thumbs which she begged to keep. All but her little toes also had to be removed.  

Bob got a medical leave from work to stay with her, and her mother and sister also came out to stay with her.  However, the last week Bob had to leave to attend their son’s wedding so Sally’s secretary and her secretary’s daughter, Beth, came out to stay with her.  On September 10, 2001 they took Sally directly from the hospital to the plane to return to Huntsville.  They landed in LA the morning of 9/11 and all flights were grounded.  Beth, not being a shy person, pushed her way to the head of the long car rental line and said she needed a van for a medical emergency.  For the next three days they drove straight from LA to Huntsville.  At every stop Beth would drag out a suitcase to put on the ground beside the van for Sally to step down on.  That trip served as Sally’s in residence PT!

Sally returned to work as head of research and development for Huntsville City Schools.  However the stress of her job and the lasting effects of her septic shock were too much.  In 2005 she took an early retirement  from her administrative position and as a former Special Education teacher with Huntsville City Schools.

Sally deserves respite! 

Book Review: Caresharing

Marty Richards dedicates this book to her Aunt Toni, who died at 102 1/2 as I [Richards] was writing this book. She indeed has been, and continues to be, my teacher and "the wind beneath my wings." This book came highly recommended to me by a social media friend who is in the field of caring for seniors.

Richards encourages us to share the caregiving journey with others and considers it a spiritual journey where whatever your faith you ponder questions about life's meaning and purpose (p. xiii).

As in another book I reviewed on this blog she uses the term "carer", but she adds "care receiver" and "care partner" to the mix. She says this journey is a dance where there are three moves:

1. Offer help
2. Ask for help
3. Receive help

She explores many emotions and growth areas that I ponder in my Christian faith: sadness, anger, guilt, fear,  failure of others, failure of self, forgiveness (a whole chapter on this one), coping, grief, and hope. She explores family expectations and roles and writes: all generations are affected when someone in the family needs care (p. 69).  She is reaching across different faiths, and so does not use Scripture as I would have done (and will do on my seminary counseling dissertation). It's as if all the issues I have addressed on this blog or may need to address are in her book.

Richards helps me want to know my husband more and not just the disease that has him. I woke up this morning and interacted with him before we even got out of bed; finally he said to turn over--he wanted a few more winks of sleep! I want all the interaction I can have with him at this stage and it is important. I am not working outside the home today and I am a lovegiver today, not just a home economist. I want to validate his feelings and learn his stories. Relating to him is just as important as all my other "to dos", some of which others can do for us. And, recently I have seen what others can do with our neighbor Kenny and Wayne who stepped up to the plate to mow our large lawns; also I now enjoy texting support from others in my church--they pray for us and I pray for them. They are caresharing.

Build on what your care partner can still do, advises Richards. Affirm their value. Ask yourself what is going on with difficult behaviors. Connect soul to soul. Even though I feel so busy much of the time, I read Scripture with my husband most mornings now, as a result of this book. I have had a habit in recent years of going through the whole Bible every year, but didn't think hubby would be able to comprehend this discipline. Instead we read from the Psalms and Proverbs and he often prays. Kenny prayed yesterday before I left to substitute teach.

On page 207 she has a hope inventory for areas of your life--the world around us, our work life, our home life, our relationships, our physical health and our sense of self-expression. She asks us to check off if we feel hopeful or hopeless in each category. WHERE DO WE NEED A NEW PERSPECTIVE on HOPE? Write an ethical will in the Orthodox Jewish tradition is one suggestion. Write a spiritual autobiography (I did that with Getting Off the Niceness Treadmill). She offers other strategies for our senior years as well.

You can get Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability, new or used, on Amazon HERE. It is well worth reading and very economic when purchased used. My used book was withdrawn from the New York Public Library and I wonder why this hardly used book was withdrawn, but am grateful for this book and its insights. I will read this book again in my journey with my husband's dementia, and practice the dance she encourages.

My Amazon review was just published HERE.

At This Stage Status Report

I mention short-term memory and my husband quips Who are you?

Here are some other things he says:

I think I asked you this before.

Carol? (I say yes.) Just wondering if you are kicking and breathing. (I show him I can kick. I show him I can breathe and he laughs.)

I go walking in the neighborhood with a neighbor lady and when I return he says. I forgot where you went.

Today he both acknowledged memory loss and accused me of not telling him something I know I told him.

Other news:

DH and "Jake" went to breakfast with "Sally" and me today. Then we did it! We took our husbands to the Plant City Senior Center. We went in with them and left. Sally picked them both up at 2:30. I had errands to do and in the process found a $25 file that looks like a chest to put in the master bedroom, the current room I am processing as I follow The House That Cleans Itself. This two drawer file will mean that all these boxes, bins and baskets I "hid" in the master bedroom can go.


Dog Ziggy at the bottom of mess.

Why ever did I think those baskets would work?

Great Solution

Two neighbor men helped take this file into the master bedroom. It looks like it could be bedroom furniture, but is really a file inside.  The bookcase and file will be a great asset as I finish up my counseling studies.

Many things need to be finished in this master bedroom, but I can see the light at the end of the tunnel now. I may need to jump ahead to area #5 now, the living room, because Christmas is coming.

Our Separate Vacations

Even before the Alzheimer's invaded our marriage we never had separate vacations. Of course there were times when hubby was in the hospital, but one can hardly call that separation a vacation. Enter respite time, breaks for caregivers. See article  here  which points out that in a survey 80% of caregivers say respite time is the number one need of caregivers. Because of the generosity of family, I had the opportunity to have respite time apart from my Alzheimer's husband.

June 22. My husband flew by himself to another area to be met by his son for a visit through July 1^st. DH’s cell phone is off and I call that home. I realize that he had already thought I was on the cruise, but it would be one and a half days until I depart. He calls back, we talk, and I take a shower. I get three calls on my cell during that shower asking "How do you open this suitcase?" I could not get through to him after that shower. I presume that he walks up two flights of steps to get his son to help him with the code to open the suitcase.

.
June 23, the next morning, I am awakened by my husband's call at 5 AM. He misses me! Did he get any sleep at all? My sister-in-law comes to Plant City and we go to Ikea in Tampa. I get a $20 on sale backpack to use as my purse when we leave the ship. Backpacks are so handy for travel and this one is a favorite color--bright pink.

June 24 hubby and I talk in the morning. My sister-in-law and I leave for Port Canaveral for a week Caribbean cruise on the Freedom of the Sea, luxury ship owned by Royal Caribbean Cruise lines. Hubby and I later talk before the ship embarks.

THERE WILL BE NO MORE CONTACT UNTIL JULY 1ST. Will he remember to wear his ties to church both Sundays? Will he forget and wear the same clothes repeatedly. Will he remember to use the plastic bag I packed for his laundry and will that laundry bag return home in his suitcase? ABOVE ALL AND MOST IMPORTANTLY WILL HE TAKE HIS PILLS TWICE A DAY? I have to leave all those cares behind. I am not paying for Internet/cell phone access on the trip. He cannot contact me about things like his suitcase.

We set sail and travel all night and the next day. I celebrate my 68th birthday with my sister-in-law Monday night, a dress formal night. We meet our lovely 5:30 PM group in the dining room; these wonderful people we will see every night if they can make it. 

From Wikipedia

     • Tuesday we were in fabulous Labadee, Haiti
     • Wednesday we were in Jamaica and got stranded when the motor to our glass bottom boat breaks.   Shortly we were rescued by another ship. "No problem", just a situation, is the Jamaican attitude.
     • Thursday we visit Grand Cayman island.
     • Friday we debark at Cozumel, Mexico.
     • Saturday is another day at sea with so much fun before we arrive back one on July 1st.

I met people in countries and on the ship to pray for. With some of them I prayed right there on the spot. God is not limited by distance. My husband was in the LORD's hands that week; his son had legal and medical documents and authority. There are other concerns in our world than a husband who has Alzheimer's and Vascular Dementia and I was able to see poverty first hand, especially in Jamaica. I know that in Mexico and Haiti there are areas beyond the tourist sections we saw. I left a pile of clothes including my fancy dinner outfit ($15 at the Goodwill) for my cabin steward that she will bring back to Jamaica and prayed with her about her daughter. You know, though, many in these poor countries may be more spiritually atuned than we in the states are.

I brought too much with me, but left some on the ship.

July 1st we carted our luggage early to customs and maybe two hours later at about 9:30 we arrived at my Plant City home. My sister-in-law left for another vacation with her family and she got home about 9:15--actually 8:15 in her time zone Sunday night. I was in time for my church--maybe ten minutes late, and I enjoyed sweet worship. I was a little sad that my husband didn't sit by my side in his usual seat at church, but his plane was scheduled to land in Tampa Sunday night.

Back home from church, my digital camera has over 130 gorgeous photos to download. E-mail at home was way over 500, including Facebook's notice that I had family and friends postings to check up on. In our house there was no water and no home phone. "No problem", just a situation. The mail will be delivered Monday.

I left to pick up my husband at the airport, receiving a message from his son that he was indeed on the plane. Excitedly, I waited to see him. When he arrived as one of the last passengers to walk up a ramp, we hug and kiss. Hubby doesn't have his shaving kit and suit jacket. A flight attendant from US Airways brings his shaving kit out to us after I ask. No jacket she says--oh well--that was a $10 Salvation Army find that does show up later wrinkled in his luggage. We go to the Olive Garden for dinner. At dinner he kept asking how long it would take to get home. Half hour, Sweetheart. Plumber to come Monday. We will also pick up our dog from the kennel on Monday. I keep repeating this information, one thought at a time, and hubby is reassured there is no problem. We are both so happy to see each other. He loved being with his family, but couldn't remember all the details. A grandson thoughtfully posted pictures of his vacation on Facebook.

Today the plumber came and cleared a box of spider webs by the main well and so water was restored. How weird is that! Thursday the phone company will be here for our land line. Just two situations.

Reflections. I have a tan and didn't gain weight. I have been waiting on hubby almost hand and foot, but the ship waiter pulled out my chair and put my napkin in my lap. Waiters with various accents robustly sang "Happy Birthday" to me on my birthday. I got to go to a workshop on nutrition where the speaker said she takes one tablespoon of coconut oil each day. I went to two workshops on napkin folding. About three mornings I walked for 30 minutes. Every night I went to entertainment including ice skating. I am still reflecting on the cruise--wonderful for me. Things don't seem so burdensome at home now because I had been pampered all week. I just relaxed about no water on Sunday.

Special thanks to my husband's family and my family for making this trip possible.

Alzheimer's Husband Travels by Himself

Hubby wanted to know again and again if I would take him to the airport and if I would pick him up. Repeatedly he wanted to be assured of this and repeatedly he noted how he would miss me. Of course I would miss him as well, but my family had arranged a cruise for me as respite time and DH was to visit his son and family out of state and meet his two new great grandsons (ticket thoughtfully paid for by his son). That son would drive several hours to an airport so that his father wouldn't have to transfer planes.

Yesterday hubby wanted to go with me on errands. The Alzheimer's loved one always wants to be with us.

"But the lawn isn't mowed," I reminded him. Now hubby will always try to arrange it to be with me, and has a tendency to put off mowing the lawn.

"I don't have any gas for the riding lawn mower," he objects.

I show him where there are other gas cans full of gas and I leave on my errands. He calls me on my cell to again say there is no gas so he can't mow. I tell him again where the gas cans are. He calls me on my cell to say I don't have to come home, because he found out there is plenty of gas. Sure enough when I get home the front yard is mowed and half of the back yard as well. The job that he has conveniently put off is 2/3 finished.

It was his turn to pray last night when we went to bed and he holds my hand tight. Thank you, LORD,  for this wonderful opportunity of our vacations. I often remind him of things to pray about, although he amazes me when he prays--how grateful he is and what he does remember.

Ready to fly today. Ziggy, our dog, is ready for his vacation also, only he thinks in his canine mind that he will go with us as he did when we camped on Memorial Day weekend. He is dropped off at the kennel.

We get to the airport ahead of time to arrange my walking him to the door of the plane. See here. Hubby and I have lunch at TGIF (not at all sure of the Weight Watcher points in a Cobb salad). We proceed through the security check points, me with my prearranged pass printed today easily because I had made that trip to the airport. I got body searched because of the wire on my bra, but somehow they didn't notice the sharp knife in my purse that I had gotten for free at Sams last week.

When hubby is ready to board, I give him a kiss and later text him (he may not know how to retreive the text). His cell is turned off. There is a picture of our dog, Ziggy, on his cell, which I think he will look at and then maybe retrieve the text.

It felt like I was a parent sending a child off to college. I knew the trip would be great and he could be with his family and meet two great grandchildren he has yet to meet. But I needed to pray more.

I went to the airport chapel and commited this week apart to the LORD. I know that the break for me is much needed, even though my husband doesn't understand respite time and we have only called it our vacations arranged by thoughtful family. LORD, help me not gain 10 pounds on my cruise. It is so hard to lose when you are older.

Just before posting this his son called to say that DH has safely arrived, minus his shaving cream which was confiscated. Thank you, LORD. Now it is time for me to finish packing for my cruise with my sister-in-law.

Here are links on traveling and dementia patients:

Taking Trips

Traveling with Dementia

Monday Morning from Caregiver Linda

I will be reading the posts regularly to gather information and support. My mother and mother-in-law (who lives in my home) both suffer from worsening dementia. Even though they are in their nineties, it is hard to see them lose the ability to communicate etc. My husband and I recently returned from a wonderful time away in Mexico. Getting a care-giver was difficult, but in the end it worked out that a woman from our church came and stayed. She was wonderful with Granny. Somehow, though, we do have a nearly $500 water bill, so I"m wondering if she left something on. I must research that this morning.

Linda